Roo's Clues

Is There a Connection Between Sleep Problems and Myalgic Pain?

2012-01-28T23:51:00.000-08:00

I just came across this study- Sleep Problems and Risk of Fibromyalgia: Longitudinal Data on an Adult Female Population in Norway- that reminded me of another possible piece of the puzzle regarding my own illness. First, a little about this study and what it found. The study was an attempt to determine whether the poor sleep that many people with Fibromyalgia report is a result of the illness or a contributing factor in developing it. What they found was that "These prospective data indicate a strong dose-dependent association between sleep problems and risk of FM." In other words, not only did having sleep problems earlier in life seem to predispose women to develop Fibromyalgia later, the degree of the sleep issues was relevant. Wow.

Now, for why this is relevant for me. I have had significant sleep problems for as long as I can remember. I mean that- as far back in childhood as I can remember, I had a very hard time waking up in the morning, I did not feel rested in the morning, and I only had bad dreams. Around the age of 8 or 9 I also developed very significant insomnia, often requiring hours to fall asleep each night and often not falling asleep until 3 or 4 AM regardless of when I went to bed or how tired I was. This problem has gotten worse as I've gotten older. It affected my ability to take classes or work in the morning and I often found creative ways of getting around this limitation.

By early adulthood it was such a limitation that I finally persevered in getting a referral to a sleep clinic to determine if I had a sleep disorder. Two overnight sleep studies were performed as well as one daytime nap study. It was clear that my sleep was seriously disordered. The two pieces of information that I was given were that I had tested as having narcolepsy, but they did not give me the diagnosis because they said it meant that I would not be allowed to drive (I am already not able to drive as I am visually impaired). The other thing, that was much more interesting, is that I had what they called "alpha intrusions" meaning that my delta sleep phase was interrupted by bursts of alpha waves.

The delta phase of sleep is the phase of deep sleep in which muscle and tissues are repaired, and at the time that I was researching this I found information suggesting that alpha intrusions (also called alpha-delta sleep) may actually be the cause of the pain in Fibromyalgia. Alpha waves normally occur during wakefulness, and when they occur during the delta sleep phase they disrupt it and keep the repair from happening. This was before my onset of ME/CFS, but I already did have chronic pain and this got me wondering. It seems even more relevant now as the "myalgia" in Fibromyalgia is the same as the "myalgia" in Myalgic Encephalomyelitis. I'm honestly not convinced that they're two distinct illnesses- they seem to be me to be variations on the same theme and this is supported by the evidence that they share underlying causality (this list of the symptoms of FM seems to be essentially the same to me as the symptoms of ME). Here are some links that discuss this connection further:

This article from Health.com discusses the theory that alpha-delta sleep is related to FM. Here is a quote:

"In 1975, pioneering researcher Harvey Moldofsky and his colleagues showed that healthy volunteers who had their sleep repeatedly disturbed developed fibromyalgia-like symptoms, including musculoskeletal aching in specific points around the body.

When asleep, healthy people pass through a cycle of progressively deeper stages of sleep, represented by fast alpha brain waves during the initial stages (indicating a half-awake state), and slow delta waves which are hallmarks of the later stages of deep sleep. But many fibromyalgia sufferers either don't reach deep sleep, or they don't stay there for long. Instead, alpha waves return, indicating to scientists that perhaps part of the brain is improperly active at that time. This phenomenon is known as alpha-delta sleep.

It is now known that crucial things happen to our bodies during deep sleep, including the release of most of the growth hormone that regenerates muscles, repairing all the tiny tears that we accumulate from daily activity.

Many researchers suggest that this lack of restorative sleep could be what's behind aching muscles, as well as the feeling of being totally worn out. (Growth hormone production declines with age, and this is accelerated in the majority of fibromyalgia cases.)"

Effects of Slow Wave Sleep Disruption on Musculoskeletal pain and Fatigue in Middle Aged Women.

This article from The Cleveland Clinic called Brain Basics: Understanding Sleep has some good information about sleep and sleep disorders, including the role of various neurotransmitters

Oxalate Levels of Grains and Starches

2012-01-20T21:28:00.000-08:00

I didn't include most grains or starches in my original post about oxalate levels of foods, as I don't tend to eat them (I follow essentially a low oxalate paleo type diet). However, a number of other people have asked about this so I thought I'd pass along the numbers. This information is taken from the main spreadsheet in the files section of the Trying_Low_Oxalates yahoo group. I highly recommend that anyone who really wants to know about oxalates and to reduce their load in the diet should join the group and get access to this document. It is based on the most up-to-date information available. Be aware that almost all the information that you find online is outdated and often very, very wrong. This list only includes GF grains and no soy products.

This is the total oxalate per serving info in mg per 1/2 cup unless otherwise noted. Some of the info may seem confusing (such as the two entries for cooked quinoa) but that is how it was in the original document, so I included it. Oxalate content will vary sometimes depending on where it was grown, and many other factors, so this is always a bit of an approximation anyway.

Cooked Grains

Sweet Corn,. fresh                                                         0.7
White Rice                                                                    range from 0.9 to 3.2
Arboria Rice                                                                  3.1
Millet Grain (soaked overnight, drained and rinsed, boiled 30 min)         4.7
Millet Grain (boiled 30 min)                                         6.1
Brown Rice    6.4
Brown Jasmine Rice                                                      8.8
Brown Basmati Rice                                                     11.2
Lundberg Quick Wild Rice (boiled for 20 min)           14.2
Wild Rice Blend                                                            15.3
Corn Grits                                                                     17.3
Quinoa Grain (boiled 30 min)                                       40
Quinoa (cooked)    54.9
Teff Whole Grain                                                           63.2
Buckwheat                                                                    113
Amaranth Grain                                                             146

Flours and Baking

Guar gum                                                 1.15mg per T
Rice Starch                                                                     2.7 per 50 grams
Green Bean Starch Flour                                               2.8
Potato Starch (Bob's Red Mill)                                     2.8
Fermented Corn Flour                                                   2.9
Water Chestnut Flour      3.6
Black-eyed Pea Flour                                                    3.8
Coconut Flour                                                               4.4
Potato Starch (un-named brand)                                   5.4
Pumpkin Seed Flour                                                      5.5
Flaxseed Meal                                                               6.6
Cornstarch                                                                     8.3
Green Pea Flour                                                            8.3
Garbanzo Bean Flour (Chickpea)                                 8.6
Wild Rice Flour                                                            10.3
Sweet Rice Flour (Mochi)    10.4
Lupin Flour                                                                  12.2
Pumpkin Flour (Barry Farm)                                       13.6
GarFava Flour (Bob's Red Mill)                                  15.2
Fava Bean Flour                                                           16.6
Yellow Pea Flour (American Spice Co.)                      16.8
Tapioca Flour (Bob's Red Mill) 19
Millet Flour                                                                  20.2
Sorghum Flour                                                             20.3
Mung Bean Flour                                                         20.7
Chestnut Flour                                                              21.5
Corn Meal Flour                                                           21.6 to 26.6 depending on brand
White Rice Flour                                                          22.5
Brown Rice Flour                                                         23
Tapioca Starch (Let's Do Organic)         24.1
Corn Meal                                                                     28.9
Pecan Meal                                                                   30.3
Arrowroot Flour                                                           34.7
Quinoa Flour                                                                140mg per 100 grams
Amaranth Flour                                                            76-147 depending on brand
Potato Flour                                                                  88.6
Rice Bran                                                                      101
Ivory Teff Flour    131
White Bean Flour                                                         141
Brown Teff Flour    151
Buckwheat Flour    168
Almond Meal (Trader Joe's)                                         394

Packaged Foods (Bread, Cereal and Noodle Products)

Cellophane Noodles (boiled 5 min)    0.7
Ivory Teff Wrap (LaTortilla Factory)    41.5 mg per wrap
Tapioca Rice hamburger bun (Kinnikinnick)                8.3 mg (no info on serving size)
Udi's White Sandwich Bread                                        14.3mg for 2 slices
Gorilla Munch (EnviroKids)                                         5.7mg per cup
Nutty Rice Cereal                                                         13.8mg per 3/4 cup
Gluten-Free oats                                                           20.8
Millet Cereal (Arrowhead Mills)                                  44.7mg per 1/2 cup
Corn tortilla                                                                  2.5 per 1 medium tortilla
Canned White Hominy                                                 6.1mg per 1/2 cup
Tinkyada Brown Rice Elbow Mac (cooked 17 min)     4.7
Kuzu and Sweet Potato Pasta (Eden Foods, cooked for 20 min)              4.8
Quinoa Elbows Pasta (Ancient harvest)                       12.8
Quinoa Spaghetti (Ancient Harvest)                             4.6
Rice Mac and Cheese (Annie's Homegrown)               4.7 per 2.5 oz
Tapioca Shreds (Pasta, boiled 5 min)                            4.6

Healing Skin Problems by Healing the Gut

2012-01-01T23:10:00.000-08:00

These are my notes from the blog radio podcast on Revolution Health Radio with Chris Kresser, L. Ac., in which he discusses natural approaches to healing from skin issues, as well as gut health and mental health issues, which are related to each other because they share the link with the gut.

He tends to approach healing skin disorders (such as acne, rosacea, dermatitis, chronic urticaria) in a similar way, with the exception of psoriasis and eczema, which are often considered to be auto-immune conditions. Some of the underlying conditions that these skin issues share are low stomach acid, SIBO (small intestine bacterial overgrowth), and leaky gut, and gut dysbiosis. Psoriasis and eczema also share this but have the added dimension of immune dysregulation so may require additional help to heal.

Knowledge of the Gut-Brain-Skin axis has been around for a long time. Over 100 years ago, Stokes and Pillsbury published work on this connection. They connected mental health issues like anxiety and depression with altered gut function, they knew that changes in the gut flora resulted in local and general inflammation that could be expressed as skin problems. Quoting from this work "There's an important linkage of emotion with cutaneous outbreaks of erythmia, urticaria, and dermatitis by way of physiology and bacteriology of the gastrointestinal tract". In discussing their work, Kresser gives us this amazing quote:

"There's a difference between being skeptical and conservative, and just being uninformed." "It's interesting to me how, when people encounter something that they don't understand, or that seems strange or foreign to them they dismiss it as being irrelevant or quackery. But in the medical literature, which is supposed to guide clinical practice, it's right there and it's been there for over a hundred years."

One of the mechanisms of this connection is low levels of stomach acid, which allows bacteria to migrate from the colon where they belong to the small intestine, where they don't. When this happens it's called SIBO (small intestine bacterial overgrowth). They also knew that stress can induce permeability in the gut.

Here are the remedies they discussed- probiotics and cod liver oil.

Kesser's theory of why low stomach acid causes acid reflux and GERD is because too little stomach acid allows bacteria and yeast to grow in the stomach, which produces gas that pushes up against the top of the stomach and the sphincter forcing it open, and allowing the acid to splash up and into the esophagus. 50% of patients on medications that reduce stomach acid (PPIs) have SIBO. SIBO is also associated with Fibromyalgia and CFS, suggesting an inflammatory connection (which is supported by a lot of other evidence). When you heal SIBO, the permeability of the gut heals.

Recent studies show that emotional stress can cause constipation, SIBO, and gut permeability. Also, that SIBO is associated with both depression and anxiety. Healing SIBO leads to improved mental health.

Studies that support a link between leaky gut and acne. Several found that people with acne were likely to be reacting to bacterial byproducts that should have been in the gut, but that had leaked out into the bloodstream. These people are then having an immune reaction to the bacterial toxins, which results in inflammation, and thus the acne. What they were reacting to is called LPS (lipopolysaccharide) endotoxin, a powerful toxin produced by certain bacteria that causes the body to mount an immune response, which can be against anything and cause auto-immunity.

There are also studies showing a link between acne and constipation. Other studies have already showed that people with constipation have altered gut flora (he often uses high doses of magnesium glycinate as a short-term way to address constipation). 70-80% of the dry weight of stool is bacteria, so which bacteria you have in your gut is a big part of your ability to form a normal stool. Chronic constipation leads to gut permeability because the toxins from the dysbiosis (which are already more plentiful) have more time to sit in the gut and cause damage to the gut wall.

The connection between stress and gut health is very important, as he says the gut is basically one big nerve plexus (in another post I link to a TED talk about how the gut is essentially a second brain). Long-term activation of the sympathetic nervous system (fight, flight or freeze) will break down the gut lining and causes a shift towards pathogenic bacteria in the gut. He also says that the parasympathetic nervous system (rest, repair, and digest) must be activated for stomach acid to be produced, and he has already discussed above how important adequate stomach acid is for gut health. Most of us, in the modern world, are in this state of chronic low level sympathetic nervous system activation because our bodies don't differentiate between actual threats to our survival and other types of stressors.

The last third of the podcast covers clinical experiences that Dr Kresser has had with specific patients. His dietary suggestions generally begin with a modified paleo approach (like auto-immune paleo), which eliminates dairy (except ghee), nightshades, sometimes eggs, FODMAPS (foods with excess fructose or fructans, sugar alcohols such as xylitol), di- and polysaccharides, and limit insoluble fiber because it can irritate an inflamed gut. Bone broth and glycine-rich foods provide the necessary ingredients to rebuild the gut wall. He also mentions that he has another diet to address migraines, that is a low tyramine, histamine, and arginine diet, and that this diet can also help clear up skin issues. This is not surprising as many people with rosacea and chronic urticaria have already ntoiced a connection with these, especially the high histamine foods.

Feeding Your Mitochondria to Heal Neurological Disease

2011-12-29T03:10:00.000-08:00

As I dug more and more deeply into the roots of both my illness and Roo's, I kept coming back to the mitochondria. Those tiny organelles that produce so much of our cellular energy are simply so important, that when they are injured, severe consequences can follow. Mercury and other poisons target them and alter their DNA more easily than that of our cells because their DNA is not as well protected. Toxins from bacterial and viral infections can also compromise their function, as well as excessive oxalate levels in the body. Injury to the mitochondria undermines our ability to detoxify, to heal ourselves, our heart, liver and brain function, and can lead to cancer. All in all they are worth protecting and healing, but how?

I came across a book in my studies called Minding My Mitochondria by Dr Terry Wahls, MD that has turned out to be a real gem. Dr Wahls is mostly recovered from very advanced Progressive Secondary MS, mostly through eating a diet to heal her mitochondria. The following video is a TED talk she gave which describes that eating plan in more detail. Below are some of the most notable quotes from the talk as well as my notes.

She was diagnosed in 2000 with MS and received the best, most advanced care that conventional medicine had to offer, but her condition deteriorated until she needed a motorized wheelchair to get around. She began doing her own research and found that the mitochondria were the common link in diseases in which brains shrank, such as MS. She first tried supplementation with fish oil, creatine, and CoQ10. She learned that in order to make healthy myelin (the protective coating around brain cells that is damaged in MS), the brain needs vitamin B1, B9 (folate), B12, omega-3 fatty acids (fish oil) and iodine. She also read that our bodies need sulfur and B6 to make neurotransmitters.

"...it is the tiny mitochondria in each of our cells that will manage the energy supply for that cell. Without your mitochondria, you would be no larger than bacteria."

Discussing the standard amercian diet she says "we, you, are all starving your cells" in regards to how few nutrients most people get from what they eat. She goes on to say "we are alive because of complex chemical reactions. If you're not providing the building blocks, that is the vitamins, minerals, essential fats, those reactions cannot happen properly, leading to the wrong structures being made, or structures simply not being made at all. You set the stage for chronic disease." She relates this to the rapid increase in chronic disease, learning disorders, and behavioral problems that we are seeing now.

So, what diet does she advocate? "For two-and-a-half million years, humans ate what we could gather and hunt...that paleo diet consists of leaves, roots, berries, meat, and fish." She points out that while what hunter-gatherers eat around the world varies a lot, their diets exceed the RDA by 2 to 10 times. "These ancient peoples know more about eating for optimal health and vitality than we physicians and we scientists."

This is her diet, based on paleo but tailored to support brain cells and mitochondria- 3 cups of green leaves, 3 cups of sulfur -rich veggies, 3 cups of bright color, grass-fed meat every day, and organ meat and seaweed once each week. "Yes, it will cost more to eat these beautiful vegetables and berries. But I assure you, you are going to pay the price. You'll pay the price now for food that restores your health and vitality, or you can pay the price for doctor's visits, for prescription drugs, surgeries, missed time from work, early retirement, and nursing home care. The choice is yours."

"I am the canary in the coalmine, here as a warning to all of you. We have a choice. We can continue to eat that delicious, convenient, tasty, processed food and watch ourselves and our children grow steadily more overweight, depressed, and diabetic. We can continue to watch health care costs balloon out of control, bankrupting us individually, and collectively as a country. Or, we can eat for our mitochondria, eating vegetables and berries, grass-fed meat...organ meat...and seaweed, and have more vitality. We all have a choice."

The Brain in the Gut (and the importance of cooking our food)

2011-12-10T21:43:00.000-08:00

In this TED talk, Heribert Watzke makes the argument that cooking our food was central in modern humans becoming who we are. He also shows how the neurological system around the gut is a second brain. Below the video are my notes.

He says that our teeth "show" that we are made to eat cooked food. Food that is mushy and soft, not very fibrous. He says that cooking food changed who we are- we not just "omnivores", we are the animals who eat cooked food. The technology of cooking allowed us to develop our huge brains, because our brains use a tremendous amount of energy, more than raw food can provide for us. When we began cooking, our brains grew and our guts shrank. Our gut shrank to 60% of a primate gut of the same body mass. This is because cooked food is easier to digest.

He breaks down our 5 tastes into 3 that sustain us- sweet for energy, salty because we need salt to maintain electrolytes, and umami (the taste of protein, this is the taste that MSG and other dietary free glutamate activates). Our other two senses, bitter and sour, protect us against poisonous and rotten materials. He says that our guts play a role in providing feedback when we have digestive discomfort (gas, bloating, stomach aches) tell us that something went wrong.

Our gut is connected to our limbic system (emotional part of the brain) and the two communicate to make decisions. The gut is the largest part of our immune systems, defending our bodies. Our gut brain has about the same number of neurons as a cat brain. It has the same diversity of neurons that are found in our "big brain". It has autonomous microcircuits- it thinks for itself. Our gut brain controls motor movements and reflexes such as gagging and vomiting, and controls the secretion of enzymes and hormones to aid digestion. (My thought- what this means is that digestive disturbances are a manifestation of neurological dysfunction, just as neurological disturbances in the brain are. Gut injury is "brain injury".)

He says that how we cook is a way to communicate with the gut- maybe we can learn how to cook so as to send the signals that we want to send. (My thought- maybe this also means that the dramatic changes in how we prepare our foods that have occurred very recently are having more of an effect on us than we realize. This seems to me to be an argument for returning to traditional cooking practices until we know more about what effect changing these practices will have.)

Signs of Zinc Deficiency

2011-12-06T19:26:00.000-08:00

There are many reasons for zinc deficiency to occur, such as gut problems and mercury poisoning, but this information is especially relevant for people with Pyroluria (the symptoms of Pyroluria are essentially the symptoms of the zinc and B6 deficiency that it causes). Severe stress (both physical and emotional) can aggravate and worsen zinc deficiency, as can severe burns, diarrhea, low levels of vitamin D, and a vegetarian or vegan diet (vegetarian diets are both low in bioavailable sources of zinc and contain higher levels of anti-nutrients that block zinc absorption such as phytic acid and oxalic acid). Interestingly many people who are chronically zinc deficient find themselves drawn to eating a vegetarian diet as the zinc deficiency can led to an aversion to meat.

Zinc deficiency can cause-

-increased oxidative stress.
-detrimental effects on mitochondrial functioning (including disruption in programmed cell death (apoptosis) which is necessary to keep cancers from forming).
-digestive problems including poor absorption of nutrients, as zinc is an important cofactor for many digestive enzymes to function.
-inadequate stomach acid, which can contribute to poor nutrient absorption and gut dysbiosis.
-low appetite and avoidance of foods, especially proteins. Severe zinc deficiency is one cause of eating disorders, in particular anorexia.
-slowed or stalled growth, both physical and developmental. 'Failure to thrive" is often associated with significant zinc deficiency. Very severe zinc deficiency can cause dwarfism.
-motor problems (possibly due to the role of zinc in nerve cell signal transmission?).

-cognitive effects (it's said that "zinc rhymes with think for a reason")
-poor immune function or response, which can lead to frequent and/or chronic illnesses.
-slow wound healing.
-elevated copper levels which can be a factor in high histamine levels.
-neurological and mental health effects such as anxiety and depression.
-disrupted ability to regulate hormone levels, possibly delaying onset of puberty.
-delayed or abnormal development and maturation of genitalia.
-infertility
-rashes and other skin problems.
-thin, weak fingernails and toenails with ridges and/or white spots.
-pale skin or skin paler than relatives (zinc is part of melanin synthesis. Melanin is neuro-protective against mercury so this may increase an individual's likelihood of becoming mercury poisoned).
-premature greying of hair or greying of hair after stressful events, for same reason as above.
-altered or dysfunctional sensory perception, including taste, smell, hearing, and vision (in particular night blindness).

-disruption in the regulation of gene expression.
-limitation of the body's ability to make glucose from amino acids and to release glucose from glycogen.

Here are resources for more information about the significance of zinc in the body:

The Linus Pauling Institute's Micro-Nutrient Database
(this also has more specific information about the role of zinc in certain diseases such as pnemonia, malaria, HIV/AIDS, and diabetes that may be useful for people with other immune challenges as well.)

Wikipedia entry for zinc deficiency

Basic overview of research involving zinc from the Natural Partners site.

Vaccine Information and Resources

2011-11-27T23:54:00.000-08:00

(This post is a work in progress and will be periodically added to.)

On a regular basis I'm asked if I have any info about vaccines for someone who is looking into how they want to approach this issue with their own child(ren). The problem is that I do- I have a ton in my unsorted bookmarks, I have some on my desktop in various folders, and I have a collection of books and articles in "real life". The problem is where to start? I keep thinking that I will put these resources together into various posts on specific topics, so that they are well organized and easy to access. Hopefully that day will come, but in the meantime I am going to list things here (as organized as possible) so that they are available until that day comes. Readers, I know I will leave out many great links, so please feel free to add ones in the comment section. I also have some posts already with vaccine info so check the link for that category on the right-hand side of the blog.

For a discussion about perceived bias in the vaccine debate, see this post.

General Sources:

National Vaccine Information Center

SafeMINDS (Sensible Action for Ending Mercury-Induced Neurological Disorders)

Vaccine Safety First

Fourteen Studies
(this site takes a critical look at the science that supposedly proves that there is no vaccine-autism link, including the conflicts of interest in those studies)

Are Vaccines Necessary and Effective?

Study Challenges Notion of Pandemic Flu
MIT researcher finds that "pandemic" flu not more deadly than regular flu

Lack of Efficacy of Haemophilus b (HiB) Polysaccharide Vaccine in Minnesota
(JAMA 1988;260:1423-1428)
"Our results indicate that vaccination withHaemophilus b polysaccharide vaccine had no effect in preventing H influenzaetype b disease in Minnesota children."

Vaccination Against Whooping Cough- Efficacy vs Risks
(this is an older study, published in The Lancet in 1977, which showed little if any benefit from Pertussis vaccine and significant risks "The claim by official bodies that the risks of whooping-cough exceed those of vaccination is questionable")

Is There a Link Between Vaccines and Autism?

The "Open Question" on Vaccines and Autism
(this is a video of an interview with former head of the NIH, Dr Bernadine Healy on CBS)

Evidence of Harm (book by David Kirby)
more info here, including a link to the introduction of the book

Ancestry of Pink Disease (Infantile Acrodynia) Identified as a Risk Factor for Autism Spectrum Disorder Journal of Toxicology and Environmental Health, Part A, vol 74:18 pp 1185-1194
"The results showed the prevalence rate of ASD among the grandchildren of pink disease survivors (1 in 25) to be significantly higher than the comparable general population prevalence rate (1 in 160). The results support the hypothesis that Hg sensitivity may be a heritable/genetic risk factor for ASD."

Hepatitis B Vaccination of Male Neonates and Autism Diagnosis, NHIS 1997-2002
Journal of Toxicology and Environmental Health, Part A, 73:1665–1677, 2010

Acetaminophen Use, Measles-Mumps-Rubella Vaccination, and Autistic Disorder
"This preliminary study found that acetaminophen use after measles-mumps-rubella vaccination was associated with autistic disorder."

Theoretical Aspects of Autism- A Review
Journal of Immunotoxicology January-March 2011, Vol. 8, No. 1 , Pages 68-79

"Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination."

Tobacco Science and the Thimerosal Scandal by Robert F. Kennedy Jr

What About a Link Between Vaccines and Other Health Conditions?

"ASIA" Autoimmune/Inflammatory Syndrome Induced by Adjuvants
J Autoimmun. 2011 Feb;36(1):4-8. Epub 2010 Aug 13.
(adjuvants are vaccine ingredients meant to provoke an immune response)

Mechanisms of Aluminum Adjuvant Toxicity And Autoimmunity in Pediatric Populations
Published in the journal Lupus February 2012 vol. 21 no. 2 223-230
(Autoimmunity is a major underlying issue in autism as well.)

Aluminum Vaccine Adjuvants- Are They Safe?
Current Medicinal Chemistry, vol.18: 17 pp 2630-2637
"Experimental research, however, clearly shows that aluminum adjuvants have a potential to induce serious immunological disorders in humans. In particular, aluminum in adjuvant form carries a risk for autoimmunity, long-term brain inflammation and associated neurological complications and may thus have profound and widespread adverse health consequences. In our opinion, the possibility that vaccine benefits may have been overrated and the risk of potential adverse effects underestimated, has not been rigorously evaluated in the medical and scientific community."

Panel Confirms H1N1 Vaccine Link with Narcolepsy
"The national narcolepsy panel's interim report suggests that the Pandemrix vaccination increases the risk of narcolepsy nearly tenfold"

Comparison of Vaccinated and Unvaccinated Children

An excerpt from the book Investigate Before You Vaccinate provides data for several vax/unvax studies conducted in New Zealand.

Olmstead, The Amish, and Autism
This article discusses evidence of the extremely low occurrence of autism among the Amish, who rarely vaccinate.

Ethical Issues and Conflict of Interest

The book Vaccine Epidemic discusses the human rights and legal issues around mandatory vaccination.

The following articles address vegetarian and vegan concerns around vaccines, which contain animal (and human) components:

Are Vaccines Vegan?

Where to Begin Learning About Vaccines (Guest Post)

2011-11-27T23:29:00.000-08:00

The following is a post written be a dear friend of mine, Miriam Mason, who is a bright shining star of inspiration and wisdom on this autism journey. She wrote this in response to the question "what information can I give a friend who is beginning to research vaccines for her own child?". Thank you so much Miriam for allowing me to pass along your words of wisdom here.

Okay, first off, I'd share information about how pharmaceutical "science" isn't really science based at all, but based on biased information looking for a specific outcome. I would caution her that keeping it "balanced" as a perspective will automatically allow bad science into the equation, and that should not be happening:

http://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medical-science/8269/

I'd inform her that last year, pharmas made over $22 *B*illion dollars in profits ALONE on vaccines ALONE, and also let her know that there are literally hundreds of new vaccines coming down the pipeline, so the bottom line is what is at play here, NOT the wellbeing of vaccine recipients. Just some basic facts. I would then show her these charts, using the CDCs (as well as UK and Australian) actual official data, this shows how vaccines are not factually responsible for health improvements over the last 200 years: http://childhealthsafety.wordpress.com/graphs/

I would also show her material like this, if she's into peaceful parenting at all: http://www.drmomma.org/2009/09/hep-b-vaccine-triples-autism-risk-in.html

I would also let her know that nearly all vaccines (even the ones they say they removed mercury from) *still* contain trace amounts, enough to damage a baby who might be predisposed due to previous exposure. Even the childhood vaccines still contain trace amounts. Mercury is a known neurotoxin, period.

I would ask her to sit down and listen to Dr. Boyd Haley, chairman of the Chemistry Dept at Univ of Kentucky. Ask her to listen to all 4 parts: http://www.youtube.com/watch?v=GQYISvsgq6s He has no conflict of interest and nothing to gain from what he says. Those who want him to be quiet do, tho.

After which she can see an actual study from the University of Calgary showing what kind of damage mercury does to brain tissue: http://www.youtube.com/watch?v=XU8nSn5Ezd8

This is all just science here. Nothing "biased" in the way that she will hear from the medical/pharma drug pusher industry. Presumably, she'll start to put 2 and 2 together, one would hope.

Oddly enough, I'm not 100% against vaccines. I'd like to see them safe. But at present, they are absolutely unequivocally dangerous for a certain % of the population.

I don't know if this helps. I have many more links, but these are as basic as I can get them without making it look like I'm running around singing Jenny McCarthy's vaccine song.

A Note on Perceived Bias in the Vaccine Safety Debate

2011-11-27T20:31:00.000-08:00

When people ask me for information about vaccine safety, they almost always emphasize that they are looking for "unbiased" information, and that they feel that much of what is out there regarding vaccines is biased. I'm not going to argue with this, I am not overjoyed with the general quality of vaccine information easily available, but this is not different than the quality of information available on any other health topic. However, people tend to hold very strong opinions on this subject as compared to many other heath issues, and I do think that "strongly held opinion" is often misinterpreted as "bias". Whether or not an opinion is "strongly held" is a separate question from whether it is informed and evidence-based. I strongly believe that it is wrong to beat children. This isn't just a bias, it is an opinion based on the evidence of how harmful this is.

A bias is when someone comes to a conclusion first, and then only considers the evidence or information that upholds their idea, dismissing the rest. If someone begins with an open question such as "what is the truth about vaccine safety?", looks at the evidence, and THEN comes to a conclusion, that is not biased, even if the conclusion is very firmly held. That merits repeating- a conclusion or opinion is not necessarily a bias. I think part of the source of this confusion is that in the US, and probably in many other western countries, there is this idea that "the truth is in the middle", that all ideas and opinions are equally worthy of being considered regardless of how informed they are. This is absurd- if someone is accused of murder, either they did it or they didn't, the truth isn't always somewhere in the middle. Just like in a criminal court case, we can look at the available evidence and consider the incentives and motivations of those involved. We may never know the exact truth for sure, but we can make an educated and informed guess. That is not the same thing as speculation and bias.

I find it ironic that it is commonplace in the mainstream media for the motivations of parents to be questioned and doubted, while the motivations of researchers, doctors, and pharmaceutical companies who stand to gain billions of dollars are assumed to be lily-white and above reproach. What do these parents have to gain? "Someone to blame" the media would say. Let me tell you, I know many many parents who do believe that vaccination played a part in their child's regression, and none take comfort in this. Instead many parents feel terrible guilt at having gone into such a major health decision without having done more research or with so much trust. Many parents have said that they wished that it was something else, something that they hadn't participated in, held their child down for, something completely beyond their control. The only two things that I see parents trying to "gain" (if you can call it that) is recognition and accountability for what happened to their children, and to save future families from this fate. Is that more questionable of a motivation than people who stand to make billions of dollars in profits?

Fascinating Biochemical Resource

2011-11-11T00:38:00.000-08:00

I just came across this web page in on online group called KEGG Pathway Maps. It has maps of an incredible number of biochemical pathways in the body, everything from metabolism of different substances (carbohydrates, amino acids, fatty acids, various vitamins, etc) to hemoglobin synthesis, to replication and repair of DNA. The maps include information about precursors, enzymes, and steps in the processes. This will prove to be an invaluable resource I'm sure.

Dr Russel Blaylock on Glutamate and Other Excitotoxins

2011-10-15T21:26:00.000-07:00

This is a topic that I've been meaning to post about for some time, as I think it is very significant for people with autism and ME/CFS (as well as others). I just came across a transcript of an interview with Dr Russel Blaylock, who has done a tremendous amount of research on this topic. He has a book out called "Excitotoxins: The Taste That Kills". He is talking about MSG and aspartame for the most part, but this is relevant for the intake of dietary glutamate as well. MSG is essentially the "crack" form of glutamate so dietary glutamate intake can lead to the same problems. Here are some quotes from the interview:

He has a great deal to say on their role in cancer, which people with ME/CFS are at high risk of developing. Interestingly a lot of the cancer associated with excitotoxin intake is leukemia and lymphoma which are common cancers seen in ME/CFS. To learn more about this, I highly recommend reading the whole interview, but here are a few quotes to give you an idea:

"Excitotoxins have been found to dramatically promote cancer growth and metastasis. In fact, one excitotoxin researcher noticed that, when cancer cells were exposed to glutamate, they became more mobile, and you see the same effect with MSG. It also causes a cancer cell to become more mobile, and that enhances metastasis, or spread. These MSG-exposed cancer cells developed all of these pseudopodia and started moving through tissues, which is one of the earlier observations from cancer."

"What the Italian study found is that if you take these same animals and expose them to formaldehyde
in the same doses, they developed the same leukemias and lymphomas. If you look back at the Trocho
Study conducted in Spain a couple of years ago, what they found was when they radiolabeled the
aspartame, they could actually see formaldehyde binding to the DNA, and it produced both single and
double strand DNA breakage.

We know that when formaldehyde binds to DNA, it's very difficult to remove it. It will stay there for
long periods of time. What that means is if you just drink a single diet cola today, or sweeten something with NutraSweet, you're accumulating damage every day. Eventually, you're going to produce this necessary pattern of DNA damage to initiate the cancer, and once you develop the cancer, the aspartic acid component of aspartame will make the cancer grow very rapidly. You've got a double effect; it's causing the cancer, and it's making the cancer multiply very rapidly."

On the effects of glutamate on organs of the body:

"So, when you're consuming MSG, the level of glutamate in the blood can rise as high as 20-fold. You get very high glutamate levels in the blood after eating a meal containing MSG. You're stimulating all of the glutamate receptors. That's why some people get explosive diarrhea and dyspepsia, because it stimulates the receptors in the esophagus and small bowel. Others may develop irritable bowel, or if they have irritable bowel, it makes it a lot worse. If they have reflux, it makes that a lot worse. The thing about the cardiac conduction system glutamate receptors is this may explain the rise in sudden cardiac death."

He says that low magnesium levels make glutamate receptors extra sensitive. This probably explains why magnesium is so effective at calming a racing heart and regulating arrhythmias. People in the west are usually deficient in magnesium (due to our low-nutrient diet), a condition which worsens with age, which leads to the question of how many adults who take meds for their heart just have a magnesium deficiency? This may also suggest a connection between oxalate sensitivity and glutamate sensitivity, as a high oxalate body burden will deplete magnesium stores.

He also says that while actual MSG was removed from baby formula in the 70s, it was replaced with forms of dietary glutamate such as caseinate and hydrolyzed soy. He says "We're destroying the nervous systems of these babies." He also points out that in studies, glutamate caused extreme weight gain in animals, so this could be a contribution to growing rates of obesity in the US. One last quote about glutamate and obesity- "what we find in MSG-exposed animals is that they prefer carbohydrates and sugars over protein-rich foods."

His comments on soy:

"The worst of the things they're doing are the soy extracts. Soybeans, naturally, have one
of the highest glutamate levels of any of the plant products. When you hydrolyze it, you release the
glutamate, such as with the soy protein isolates. The glutamate levels are higher than a lot of what you'll find in other MSG-contaning products, yet the vegetarians are just eating it like it's the healthiest thing in the world. There was a 25-year study done, which looked at people who consumed the most soy products, and they followed them for 25 years and did serial CT scans of their brain. They found out that the people who consumed the most soybean products had the greatest incidence of dementia and brain atrophy."

On the blood-brain barrier:

"What researchers have shown is that there are glutamate receptors on both sides of the blood brain barrier and that when you expose these receptors to glutamate, it opens up the blood brain barrier. So, the glutamate itself can open the barrier, and I list all the conditions under which the barrier is broken. For instance, as you get older, your barrier becomes less competent. Almost all Alzheimer's patients have incompetent barriers. Heat stroke, seizures, autoimmune disorders and multiple sclerosis are all associated with an incompetent blood brain barrier."

On seizures:

"I don't know how many seizure patients I've gotten off their medicines by just getting them off MSG and giving them magnesium. They quit having seizures. They were on maximum dosages of medications and still having seizures. Most neurologists and neurosurgeons that treat seizures are not aware of this."

And lastly, he has this to say about all the neurological disorders that are becoming so common, including autism:

"You look at one person's research and they'll say, "Alzheimer's is related to mercury exposure," and then another one says, "No, it's related to pesticides," and yet another one says it something else, but they're all operating through the same mechanism. All of these things operate by increasing brain immune activity, and that activates excitotoxicity. So that's why all of them seem to be related, because they're all doing the same thing to the brain."

Why I Never Mourned for Roo

2011-09-09T20:22:00.000-07:00

I recently saw a discussion of a book written by the father of a boy with autism in the New York Times. The author has been asked whether he mourned for his son when he found out that he has autism, as many parents do. It seems to me that this is generally considered to be a healthy (if not necessary) response by parents in order to adjust and accept their child. This is such a common question and topic for autism parents, but for some reason I had never thought before about whether or not I had done this. I haven't. I tried to explain my reasons in my response, which I have copied below:

I love the focus this author has put on connection with his son. Connection has been my primary goal all along with my son who is mostly recovered from autism. Mourning isn't the right word for how I felt when my baby's shining and outgoing personality faded away after his first birthday when he regressed into autism. I was terrified that we may never see that incredible personality again, that personality that we had fallen in love with. I felt angry that the negligence of others led to my child being injured in such a way that he lost the ability to communicate and spent his days screaming from physical and emotional agony. I place no value on "normal" and never mourned the loss of it, but I did shed many tears over my child's unnecessary suffering.

He wasn't gone and I knew that if we could figure out what had happened to him, what had caused his autism, he would shine again. I've always known that the autism was not "who he was" but "something he had". With research and medical help we discovered what was at the root of his autism (mitochondrial dysfunction and immune suppression that led to neuro-inflammation and viral encephalitis among other things). As we healed his body he has always been free to be however he chooses. He chooses to be socially outgoing, playful, and engaged in the world around him. All of those amazing abilities of his? He has them even more- they were never part of the autism, they are his.

We encourage him to define for himself what his autism has meant for him. Still, as his body has healed and his abilities have come back, he has embraced them. His autism symptoms were never something he chose. Recovery has never been about changing who he is, it's been about removing barriers to him becoming who he wants to become. Now the world is his oyster and I can't wait to see what he makes of it.

Identifying Potential Biomarkers for Chronic Fatigue Syndrome

2011-09-09T20:02:00.000-07:00

This video is of a presentation that was given in 2008 at a conference about the viruses HHV6 and HHV7. The presentation outlines some objective findings of abnormal test results in people with CFS (Chronic Fatigue Syndrome) as defined by the CDC as potential biomarkers. The abnormal findings include abnormal SPECT scans, EEGs, MRIs, and substances found in spinal fluid. Spike waves were found more often on EEGs of those with CFS than healthy controls, which is interesting to me as I was found to have what are called "alpha intrusions" on EEGs that were done as part of a sleep study. I'm wondering if those would count as spike waves.

Here is the second part of the presentation:

The second part of the presentation discusses signs of infection in CFS patients. Findings include:
- As many as 70-85% of patients report that their CFS began with an acute flu-like illness
- Elevated circulating immune complexes compared to healthy controls
- Poor function in Natural Killer cells
- Elevated levels of CD8 T-cells bearing activation antigens
- Upregulation of pro-inflammatory cytokines
- Increased TGF-beta
- Upregulation of gene expression for genes involved in immune activation, energy metabolism, and neurohormones involved in the stress response

Evidence for HHV6 in CFS includes antibody identification, the presence of large refractile giant cells which are known to result from HHV6 infection, and many studies have found active HHV6 infection in CFS patients. I found the closing paragraph of the presentation especially interesting:

"The possible association of HHV6 with temporal lobe seizures and MS, and the shared clinical features of CFS with temporal lobe seizures and MS are provocative, but of uncertain significance at this time".

New Criteria for Myalgic Encephalomyelitis

2011-08-20T01:01:00.000-07:00

In the summer of 2011 a team of people with an impressive background in studying and treating ME/CFS came together to present a new diagnostic criteria for Myalgic Encephalomyelitis (ME). This new International Consensus Criteria represents a huge step forward from the term Chronic Fatigue Syndrome, which was so broadly and vaguely defined as to lead to more confusion than anything else. The reasons for the new criteria are explained in this quote:

"Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners, and benefit both the physician and patient in the clinical setting as well as clinical researchers."

It was possible for patients to meet the criteria for CFS without any physical symptoms. This resulted in a group of patients sharing a diagnosis with tremendously different etiologies, daily experiences, degrees of debilitation, and prognosis. Some recent research has supported certain interventions (such as Graded Exercise Therapy) that are known to be dangerous for patients with the pathophysiology of ME. By defining ME more specifically and clearly, hopefully this disease will be considered more valid and more appropriate therapies will be used. I think this criteria brings us much closer to recognizing what I believe to be the central role of mitochondrial dysfunction in the etiology of ME. This post from the blog Living with Chronic Fatigue Syndrome gives a good perspective about the new criteria and why they are such a step forward.

Early Reading- A Great Idea?

2011-08-14T00:01:00.000-07:00

The form of autism that Roo has is called Hyperlexia. He taught himself to read before he could talk. Hyperlexia is not exactly as it is often described online, by "experts" who do not live with our kids. It is more than just a splinter skill that is nothing more than decoding with no comprehension at all. I will describe it more fully in another post, but for now what is relevant is that it often leads to very, very early and advanced reading ability. For kids with Hyperlexia, reading comes naturally while oral language is a struggle to learn, in reverse of the usual experience in which children learn to talk as part of their natural development but most work to learn to read. Roo could read before he began to speak again at the age of 3.5 years. We know he was reading because he could play a memory game that involved matching pictures to the word for the picture. There were other signs as well, but that was the most irrefutable one. Hyperlexia is also on the autism spectrum and as such involves a significant social delay as well.

On the surface, Hyperlexia hardly sounds like a disability given the emphasis our society places on early academic achievement. Our society is preoccupied with the early childhood years- even the first year- as preparation to "get ahead" in academics later on. Letters and numbers decorate so many baby and child items (you don't realize how many until you have a child who is obsessed with them), and parents are forever pointing to the letters and making their sounds. Most people don't bat an eye or even notice this but I could not help but see it. Why? Because I am the mother of a child who read very very early, and is very advanced in reading ability. By the time he was 5 or 6 Roo could read anything you put in front of him. He struggled to interact with other kids in even a basic way or to express his basic needs. Reading ability is not the ticket to a happy and fulfilling life- not in the way that interpersonal skills are. When I see mothers of babies hold up block after block repeating the name of the letter pictured while the baby tried to make eye contact and giggle, all I can think of is what I would have given for Roo to have done that. I want to shake those mothers and tell them that games of peek-a-boo, and giggles, and bonding ARE the "work" of babies, not reading. Reading comes in time once the more important basics of social interaction are learned. The early reading is no prize when it comes at the cost of social connection.

For a long time I've struggled to put into words how I feel when I see people place academic interaction above social interaction with young kids, but I recently came across an article in Psychology Today that said exactly what I had wanted to say. Here is a quote from the author, speaking about her counseling clients, that says what I have wanted to say myself:

"It's the "other stuff" of life that eludes them -- loving and being loved, balancing their lives, managing their emotions, living a life of meaning and depth. Almost without exception, their early experiences of connection with their parents -- their attachment -- looms large in how they got here.

What does this have to do with babies and reading, and those horrendous advertisements for teaching your baby to read?

First and foremost: The fundamental task of early childhood isn't learning to read, or to "get ahead" for school, or to impress the neighbors, or to give the folks something to brag about. Encouraging children to surge ahead beyond their real developmental needs leaves them with some really sludgy clean-up to grapple with later on.

The most important task of early childhood is experiencing a healthy, secure attachment in which the child's caregivers are attuned to the child's inner state and respond in a contingent manner.Let me say that again. What kids need from the get-go is a parent who "gets" them, who pays attention to what's going on inside them, and who responds to them in a way that's actually related to what the kid is feeling.
Healthy, secure, attuned attachment gives kids some much deeper "advantages" in life than whether they learn to read early."

The quote above is talking about pushing babies and children beyond their natural developmental paths and timeframes. Some children, like Roo, are developmentally ready to read very young. When this happens it is not something that was taught or demanded of the child, it happened because the child was ready. I am not discouraging that at all, and we were quite grateful for Roo's reading as it was our bridge of communication for a long time. I'm just saying that it is not so wonderful that the natural work of babies- to connect and form the basis of a healthy emotional and social existence- should be sacrificed to achieve it.

Meet Julia

2011-08-13T20:23:00.000-07:00

The most recent case in which a child with autism has been compensated by the Federal Vaccine Injury Compensation Program (at least that I'm aware of, the news doesn't cover these stories) is that of Julia. You can read some about her story here. Julia's case was conceded by the government, which means that when they (DHHS) took a look at her case they "settled out of court" and gave her a settlement. DHHS (The Department of Health and Human Services) is the "defendant" in vaccine court and can choose to settle rather than have the case heard in vaccine court. These cases are then sealed (even when the families want the cases to be public record). To read more about Julia's story, and her mom's experience of filing in VICP, you can see her mom's blog here.

Rupert Murdoch and the GMC Hearing of Dr Wakefield

2011-07-17T20:15:00.000-07:00

As new information is coming to light about criminal activity on the part of Rupert Murdoch's media empire, many are wanting to revisit the accusations that were made against Dr Wakefield and the subsequent hearing by the GMC. Every one of those accusations was brought by one person, Brian Deer, who worked for Murdoch's Sunday Times of London. In an odd turn of events, Brian Deer brought the charges against Dr Wakefield and then covered the hearing that followed as if he were an impartial observer. This article, published in a local news source, lays out the doubts raised about the role of both Brian Deer and Murdoch himself in this episode quite well. The BBC has run several stories with more information on the scope of the scandal and here and here. The second article mentions how allegations in this scandal have spread to include The Sunday Times of London.

To those who have followed this case it is no surprise that foul pay may have been involved on the part of the Sunday Times. This story resurfaced earlier this year, when the journal that had published Dr Wakefield's 1998 paper in which he presented his findings about the new digestive disease found in children with autism called Lymphoid Nodular Hyperplasia and suggested that more research be done to investigate a possible link with the MMR vaccination, was retracted. The retraction was based on claims from Brian Deer that the medical records of the children from the 1998 paper had been altered. He claimed to have these records in his possession at his apartment. However, he never had legal access to those records, and no one ever corroborated his claims as no one else had access either. Dr Wakefield and the parents of the children (who do have access legally) were able to explain the supposed anomalies. There was a bit of an outcry in England as to how he had gotten ahold of those records illegally, and why questions about that were deleted from the BMJ website. There seemed to be no awareness of this controversy in media reports that appeared here in the US.

To find out more about Brian Deer, who he is, and how he conducted the "research" that led to his accusations against Dr Wakefield, I highly suggest watching the film Selective Hearing. This film was made by the parents of The Lancet 12 (the 12 children whose cases were presented in the 1998 Lancet paper). Here is that film:

The GAPS Diet, Our Biggest Miracle

2011-06-02T00:35:00.000-07:00

I have been wanting to write this post for a very, very long time. We began the GAPS Diet (GAPS stands for Gut and Psychology Syndrome) almost 2.5 years ago and the difference that it has made has been unbelievable. So unbelievable in fact, that writing this post has felt daunting, so I will keep this one simple and add more bits and pieces later. The diet was developed by Dr Natasha Campbell-McBride, who has done advanced work in both neurology and nutrition, and those are two great things that really go great together. The diet itself is based on the principles of the SCD (Specific Carbohydrate Diet, I'll do a post about that one too), but it brings in a lot of other pieces and is actually more of a protocol than just a "diet".

The basic premise of the SCD is that diseases of the GI tract, such as Crohn's Disease and Ulcerative Colitis, are due to an overgrowth of pathogens in the gut, and the solution is to starve them out by avoiding polysaccharides (starches and sugars aside from some honey, which is a monosaccharide). The SCD has been widely used to address autism because of the importance of gut health for neurological health. The GAPS diet takes that principle further, most notably by focusing on the importance of probiotics and fermented foods to restore gut health. The GAPS diet also has a much longer and more elaborate "intro" period that, while optional, significantly boosts the diet's effectiveness.

While both the SCD and GAPS can seem overwhelming to start, many families have been able to make them work and have seen tremendous progress not only in their children with ASD but in other family members as well. It is common to hear that a brother's ADHD was healed, or a sister's asthma, or a mother's depression while they followed the GAPS diet along with their autistic family member.

Roo had been GF/CF for 3 years before we begun GAPS, and during that time we had incorporated many other principles into his diet as well, including avoidance of IgG allergens, low sugar, organic when possible, avoidance of the very highest oxalate foods, and low histamine. Even though he had done well on those diets he still made immediate and dramatic progress on GAPS. Within several months he had gone from showing very little interest in other children to being socially outgoing. His language jumped forward. He was much more "present". It was as if a curtain had been lifted and he was more able to interact directly with the world around him. Most importantly he was so much happier- he literally developed a spring in his step. He would literally skip down the sidewalk, waving to and greeting people as he went. It was as if he "woke up".

After about 9 months on the diet, Roo surprised us all by losing his extreme dairy sensitivity. I lost my IgE allergy to dairy- that I've had since childhood. We are no longer acutely sensitive to high histamine foods and ate them freely this spring despite it being a record year for pollen (we did have some minor histamine effects, but not worth altering diet for). Perhaps the most surprising of all is that Roo began to tolerate accidental trace exposures to gluten. In the past, even a trace would send him into a tailspin for 6 weeks. We were shocked when several weeks ago he actually ate a sizable amount of gluten and had absolutely no reaction to it. I have been blown away by the healing power of this diet. Personally, it has helped me reduce my ME/CFS symptoms, and made my OCD and major anxiety mostly disappear. My head is a completely different- and much more pleasant- place to live!

Here are some basic GAPS resources for you:

Dr Campbell-McBride's GAPS site

The GAPS Diet: Natural Digestive Healing

GAPS Help Yahoo group

GAPS Guide: Discussing a Program to Heal Bowels, Body and Brain

Grain-Free Foodies (GAPS recipes by a friend and I)

The Internal Bliss Cookbook (featuring recipes by me!)

The Canary Party- Political Action to Address Our Failing Health

2011-05-30T23:48:00.000-07:00

For the many years that I have been involved with autism and now ME/CFS as well, I have seen a rising tide of frustration with the lack of acknowledgement and concern from those in a position of authority about the significant worsening of the health of American children (and adults!). This generation of children is the sickest ever on record. 1 in 6 US children now has a developmental disability, and between 43 and 54% have a chronic health problem depending on how that is defined. During my adulthood, we have watched helplessly as autism has gone from being so rare that people had no reference point aside from the movie Rain Man to something so common that nearly everyone has a relative or friend affected.

It's not just children- the elderly are increasingly developing Alzheimer's Disease, and are being prescribed more and more medications. Adults are increasingly struggling with so many diseases, including diabetes, Lyme Disease, and Fibromyalgia to name just a few. And in children it's not just autism either. Adult-onset diabetes was renamed Type II Diabetes because it now tends to strike children. Asthma, rheumatoid arthritis, even cancer has become much more common in children. When I look around it's amazing how many sick people I see. What's even more amazing is how much no one in a position to figure out why- including the medical establishment and the government- seems to feel any urgency to do exactly that. I recently read an excellent blog post describing how sick is the new normal.

More and more families are going broke under the weight of extreme medical costs as well as the adjustments in family structure that often accompany these medical problems, such as one parent being unable to work due to either his or her own disability or due to the needs of a child with a health condition. We have finally hit a sort of critical mass in numbers of families affected and in the collective frustration level with public apathy and this has resulted in a new political movement called the Canary Party. If you share the concern over the declining health of our children, please consider getting involved. You can read more about the Canary Party on their site, but here is an exerpt from the site for you :

In 2010, a group of parents of children who were suffering from neurological and autoimmune disorders, and who had been active for years in their efforts to get mainstream medicine to address the causes of, and find treatments for, their children's poor health, faced the realization that while they had been earnest in their engagement of both the private medical industry and government public health officials, the medical establishment was not working in good faith with them. They decided that if anything was to be done about the epidemic levels of childhood chronic illness in the US, it would have to be a result of real political pressure to clean up the corruption in the medical establishment that was allowing bad pharmaceuticals, bad medical practices and bad public health policy to assault human health on such a wide scale.

They began talking with those injured by medicine in other ways, those concerned with parental rights, with lack of choices in health care options, with environmental pollution, with nutrition, and with the encroachment of the medical industrial complex on the basic rights of the individual to practice informed consent in medical care.

In the spring of 2011, it became clear that waiting to do something was no longer an option. It was time to launch The Canary Party, because the medical establishment is not paying attention to the sick canaries in our society that are telling us that there are serious problems that need to be addressed, and that if they are not, we must expect that society will begin to suffer greater and greater collapse as more and more people succumb to the diseases and disorders rampant today.

It was time to stop asking the medical establishment to pay attention to the epidemic of illness, and demand that they do, or replace them with better men who would.

The Importance of the Gallbladder and Bile

2011-05-23T01:05:00.000-07:00

I developed acute gallbladder disease when I was pregnant with Roo's older brother. My gallbladder was removed in emergency surgery just 6 weeks after his birth. Looking back, I probably had problems with my gallbladder going much farther back, at least into my teens. I have always felt that this was probably a factor in the health issues of both children, and I have especially wondered if the fact that I had no gallbladder at all while pregnant with Roo is part of what happened to him.

When I had my acute onset of ME/CFS about 2.5 years ago, which involved cardiac problems, my doctor mentioned that it seemed common that women who had had their gallbladders removed but who did not take bile salt supplements developed heart problems. She didn't now why, but this sparked an interest in me to find out more. I think that the simplest explanation is that the body absorbs Coenzyme Q10 based on how much bile it comes into contact with, and CoQ10 is essential for healthy heart function. It is also central to healthy mitochondrial function so I have wondered if the fact that I did not have a gallbladder, and therefore had inadequate bile flow during my pregnancy with Roo, led to his mitochondrial dysfunction.

Recently my attention has turned back to this question as I keep realizing that so many of my health issues come back to the liver, including detoxification, regulation of energy and weight, balancing hormones, hemoglobin synthesis (the process involved in Pyrroluria), and a process that leads to endogenous oxalate production. Even my vision problems may tie back to liver health. To read more about the function of the liver read this post. When the gallbladder is not there to store bile, the bile produced by the liver backs up and can congest the liver, thus compromising its function. Additionally, if the underlying problem that led to the formation of gallstones has not been corrected, stones can continue to form in the liver and cause further problems. Several months ago I begrudgingly took a round of Azythromycin and suffered a severe adverse reaction to it that the package insert said was a sign that the drug had caused liver damage (more on this in a future post). I began researching healing the liver again and came across this site that is very intriguing to me. I have tried doing the apple juice cleanse to clear out stagnant bile, and although I did not follow the protocol as long as directed, I had an immediate benefit from doing it. I plan to look into this program further. It looks as if it may contain herbs that could help flush oxalate from the body as well.

I also have come across the following series of videos about the gallbladder, liver, and the functions of bile in the body. Although these videos are an ad for a product they do seem to contain generally good info that I think is presented in a very accessible way. These three videos are an excellent introduction to the significance of a healthy bile flow in the body and the many things that can go wrong when that flow is interrupted.

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Basically, the video is saying that our bodies need the amino acids glycine and taurine, as well as phosphotidyl choline to keep the bile liquid. If those are in short supply in the body the bile becomes thickened and can't be squeezed out into the intestines properly. Taurine and glycine are used for detoxification, and when we are exposed to ongoing toxic exposure there is simply not enough left in the body to keep the bile healthy. Chlorine requires these two amino acids to be detoxified and most of us in the developed world are exposed to it every day. Phosphotidylcholine is used to process adrenaline and noradrenaline which are released when we are stressed. If we experience chronic stress, we will become deficient in this and again not have enough to keep the bile flow healthy. When the bile becomes thick it can form into stones, causing further blockages of bile.

If the bile becomes thickened and cannot be released as needed, three sets of problems occur (according to the video); the first set of problems stem from not getting enough bile into the intestines, the second set of problems occur when toxins that would normally be excreted via the bile build up in the liver, and the third set of problems occurs when the backed up bile gets into the pancreas. In the intestines, bile is needed to neutralize the acidity of food from the stomach (bile is highly alkaline). Bile also kills parasites and yeast and keeps them from overgrowing. If the acidic contents of the stomach are not neutralized properly, this acidic mixture can burn the insides of our intestines. Bile is necessary for us to absorb fats, oils, and fat soluble vitamins properly. Bile also stimulates peristalsis, which is the movement of the intestines that keeps the food moving as it is being digested, and it regulates the intestinal immune system.

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This video gives more detailed information about the immune system in the gut. Bile helps keep auto-immune disorders from developing by regulating the gut's immune system. The video also goes on to discuss what happens when toxins back up into the liver. The only way that cholesterol can leave the body is via the bile, so if the bile is backing up cholesterol can rise. If bile backs up into the blood, it inhibits the actions of white blood cells immuno-suppressant effect. If bile backs up into the pancreas and liver it can cause irritation and burns. This irritation can cause diabetes and cancer.

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Even after surgical removal of the gallbladder, stones can and do form from the bile in the liver and in the ducts. This video makes the point that the gallbladder regulates the excretion of bile into the intestines the way a faucet regulates the flow of water out of pipes. It is important that bile is held in the gallbladder when not needed and released in a large enough quantity when it is needed rather than dripping out of the liver the way water would drip from an open pipe. I wonder if this dripping action causes caustic burns in the duodenum since bile is dripping in at times when the acidic contents of the stomach are not being released. This segment of the video introduces the product that they are selling, which contains the herb Chanca Piedra in addition to taurine, glycine, and phosphotidylcholine. I have already read about this herb's supposed ability to dissolve kidney stones and the video claims that scientific studies have shown that it can both dissolve oxalate stones and keep oxalate crystals from forming in the first place. You can bet I'm very curious about this- I will try to look up this research.

A Change of Paradigm

2011-05-08T00:59:00.000-07:00

I was first introduced to autism about 16 years ago when I took a job as an ABA therapist. It seemed like an interesting enough thing to do- I had no idea that the experience that I gained over the 5 years that I worked with kids with autism would end up being so personally relevant, and so painfully ironic. It's not the specific skills that I learned that have been helpful- my perspective about ABA has changed over time and I have chosen not to use it with Roo. What I have found helpful is what I learned on a more philosophical level. I learned that kids can and do recover. I learned that even a seemingly small improvement in abilities can have a profound change in the quality of life of a person with autism. I developed an intimate familiarity with autism that allowed me to see past the strikingly different behaviors that lead so many people to view people with autism as so fundamentally alien to see them instead as truly whole people who are more like the rest of us than not.

However, there is one very fundamental way that my perspective of autism has changed dramatically. Central to the ABA approach is the idea that autism is a deficit of skills that need to be taught. As I learned more about the biological side of autism, I saw this in terms of injury that limited the person's ability to learn "naturally" from his or her environment the way that neurotypical children do. I saw the biological underlying causes of autism as resulting in skill deficit. However, there have been times that Roo has demonstrated new abilities so quickly after introducing a new intervention, such as anti-viral therapy, that the old model just didn't make sense. How could he have learned so much language so suddenly? I have now come to see the biological aspects of autism not as causing deficits in learning or abilities, but rather as suppressing abilities that are there. This is the only explanation that fits my observations.

The speed with which Roo began exhibiting such advanced social abilities after beginning the GAPS diet was simply unbelievable. Once I made this paradigm shift, it suddenly became obvious that his anxiety had been so intense that it had suppressed abilities that he had already had. Once the anxiety was lessened he was free to let his social side shine. I felt so sad wondering how long these abilities had sat latent in him. It's almost overwhelming to think of the potential that is hidden inside so many of our kids, what they would be capable of if we removed the barriers that keep these abilities hidden. I have been struggling to find a way to articulate this paradigm shift, thinking that I am alone in this idea, when I just came across the synopsis for Martha Herbert's presentation at the upcoming AutismOne conference later this month. Here is a quote from it:

"Physiological research and observations are increasingly contradicting the conventional view that autism is a purely genetic and hardwired set of deficits. Systemic and brain metabolic and immune changes, regression, transient and persistent improvement, and remarkable brilliance even in some who can't talk, all suggest that "autism" may arise from an interacting web of physiological problems that create obstruction of function or obstruction of expression rather than deficient capability. "

I want to repeat that last part, because it says what I've wanted to say so perfectly- "suggest that "autism" may arise from an interacting web of physiological problems that create obstruction of function or obstruction of expression rather than deficient capability. " Thank you Martha. It is so much harder to write off our kids when you see them that way.

Mitochondria: Up Close and Personal

2011-05-08T00:18:00.000-07:00

The concepts of biology and biochemistry that come up in biomedical intervention can seem very abstract, so I tink it's helpful sometimes to take a (virtual) look at what we are talking about. Here are several videos that bring mitochondrial functioning to life. This first one is a general one from the BioVisions project at Harvard:

The next video was made by the group Mito Action about mitochondrial disease, but is also relevant to mitochondrial dysfunction. Mito disease is much more rare, and more likely to be genetic, but is much more common in people with autism than the non-autistic population. Mito dysfunction is usually acquired from exposure to toxins in the environment and free radical damage in the body. This video has more detail and includes explanations of what you are seeing:

Weighing the Risks and Benefits of Medical Intervention

2011-04-17T15:30:00.000-07:00

A study was published this month in the journal Archives of Internal Medicine that has pretty profound implications for the doctor-patient relationship. This study found that doctors weigh the potential adverse reactions to a medical intervention differently for themselves than they do when making recommendations to their patients. The conclusion of the study is that "The act of making a recommendation changesthe ways that physicians think regarding medical choices. Betterunderstanding of this thought process will help determine whenor whether recommendations improve decision making."

The interpretation that I come to from this is that patients are best served by asking doctors for information rather than for recommendations. The study was done by giving doctors a hypothetical situation and asking them to choose between two alternative treatments with different risk patterns. It seems to me that the patient is best served by asking the doctor for information about the treatment options and their risks and then making their own decision about which risks they are most willing to take. The implications of this study for vaccination are unavoidable- when making vaccination decisions, it is your family and your child who is taking on the risks- shouldn't it be your family that ultimately makes this decision?

This is an article that gives a little more background about how the study was done and the specific questions that were asked. Doctors were asked about hypothetical treatments for either colon cancer or an outbreak of avian flu. In the case of the hypothetical avian flu outbreak:

"The avian influenza scenario survey was returned by 698 doctors and a whopping 62.9 percent of them said they'd personally refuse the immunoglobulin treatment when imagining they had been infected, in order to avoid its adverse effects. But what decision did the docs make when imagining that a patient had been infected with the avian flu? The vast majority stated they'd recommend the immunoglobulin shots."

Redefining the Role of the Patient

2011-04-17T14:27:00.000-07:00

One of the themes that is shared between my family's experience of ME/CFS and our experience of autism is a need to change the way that we have related to the medical system in the past in order to find and receive meaningful help. When I was much younger, I used medical care the way that most people still do today- I saw the doctor as the expert and I would go to them when I thought I had a problem to see if I actually did and to find out what to do about it. They had special training and charged a very significant amount of money on the basis that their input was very valuable and could not be found elsewhere. This made sense to me, so I would dutifully follow whatever advice I was given. I didn't think to question it or do my own research because how could I, someone with no medical training, ever understand what they were talking about? Later I would discover the discipline of Medical Anthropology (and even later, that of Medical Sociology) and come to see my earlier beliefs in an entirely different light.

When we took Roo in to begin the evaluation process when he was 3 it became clear to me very quickly that these people did not have the information that we needed. They were engaged in an elaborate semantic exercise regarding exactly what to call "what he has" without focusing on the realities of those symptoms. I saw right through the diagnosis dance that all the show was a smoke screen for the fact that they really had no idea what had actually happened to my child and what exactly needed to be done to help him. They ended up recommending Occupational Therapy and Speech Therapy, which is what they would have done pretty much regardless of the diagnosis. Seeing as he had intense sensory processing difficulties and no language at all at this time this hardly seemed like rocket science.

Once the facade of expertise was cracked it fell away pretty quickly. They couldn't tel me *why* my child had such disordered sensory processing capabilities or *why* he had no language. He did not have these issues in his first year before he regressed, so why did he have them now? WHAT HAPPENED TO HIM? Before we even had him evaluated, our family doctor had suggested that he may have food allergies. She had no suggestion of what they might be and we did not want to subject Roo to painful testing if not necessary. We put him on the gluten-free, casein-free diet honestly as a wild guess and within one week he had said 30 words and his regression had halted. Once we began the speech and OT these therapies had an almost imperceptible benefit if they had any at all. So, from the very beginning, it was clear that if we were going to find things that were going to really help Roo we would need to take an active role in seeking those things out ourselves. The experts did not have the answers.

This experience has been mirrored in my own health. While the experts debate whether or not CFS (Chronic Fatigue Syndrome) is real, or simply the delusional claims of mentally ill patients, I've done my own research into what my symptoms may mean and what I can do to address them. What I've found in both this context and in the case of autism is that other affected people are generally the best source of information because we are the most motivated to move beyond the stifling political overtones of these disorders and get to the point where real, open-minded research can lead to real results. Affected people and their families *know* that these disorders are real and get no benefit from the endless repetition of tired dogma. What is especially ironic about this is that all it takes is asking the question "what could these symptoms mean if we view the body as a biological entity?". It has taken me a long time to realize that in the context of conventional medicine this is actually a revolutionary concept.

I was excited when I found this TED talk about just this subject- redefining the role of patients in their own treatment. The speaker says that patients are the most under-utilized resource in health care today and ends with the mantra "let patients help!". I would go one step further and say it's not patients who should be allowed to help doctors, but rather doctors who should help patients.

A Day in the Life 4/13/11

2011-04-17T00:08:00.000-07:00

One of the reasons that I started this blog was to increase real awareness of the breadth and scope of Autism Spectrum Disorder. Roo is atypical in his ASD and this was a major stumbling block for us in figuring out what he needed, and so we lost valuable time and he suffered more than he needed to. In some ways he is milder than most kids with autism, which is why his doctor and I agree that PDD (Pervasive Developmental Disorder) is a more apt diagnosis for him based on DSM criteria, but he does not simply have "mild autism". Autism varies in more ways than just one so it is misleading to put it all on a one-dimensional line and call it a "spectrum". It is more of an n-dimensional plane (yes I'm a math geek). He has "atypical autism". This term is of course ludicrous as pretty much everything about autism is atypical, but there you have it.

Sharing what our daily life looks like was one of my original goals, but in the 2 years that I've been writing this blog, I have almost entirely focused on the science behind how we approach and treat Roo's ASD and my ME/CFS. This is all important but I have realized that this is partly because it is hard to present the personal side. It is deeply painful to acknowledge how all of this has affected us personally. It's much easier to keep to the abstract and impersonal, but focus on the personal I must if I am to meet my original goals of raising awareness, processing and healing from what happened to us, and being able to see the chaos of our lives in in a way that makes any sense. A very common theme among parents of kids with autism is a need to go back and figure out what happened to our children. This post is the beginning of a series of "a day in the life" posts that will hopefully put a more personal face on our journey through, and out of, ASD.

It is spring, and the weather today has been a strange mixture of sunshine and hail. I swear some days I feel that my life must be a movie as the metaphors are so obvious. If nothing else, autism is an unpredictable ride from one extreme to another. I woke up this morning stewing about how much I want to attend the AutismOne conference this year, which I can do except for the fact that Roo has extreme separation anxiety. He is nearly 8 years old and still it is so hard for him to be away from me for even a few hours with another trusted adult- how can I leave him for 5 days? Sometimes the resentment and frustration over the limits that his ASD places on us is almost unbearable. I still may go, but if there is hell to pay when I get back, I am the one who will be paying it. And of course Roo. He didn't choose this for himself and it is not *him* that I am frustrated with, but rather his ASD. Nothing about having ASD is fair to him more than it is unfair to the rest of us.

In addition to that frustration, there are other reminders of how far we still have left to go. He ate his breakfast with his hands, as usual. He refuses to wash them with soap. I dread breakfast every morning as it seems to be when he is pickiest. I am grateful that he ate, and that he took the concoction of supplements that I prepare at every meal for him like some mad scientist. And then, out of the blue, we are at another extreme and my jaw is left hanging open- we are making snakes out of paper and I have gotten the protractor out to show him how to use it to measure angles (we homeschool). I give him a few examples, then show him that a straight line is 180 degrees. He looks up at me and says "or zero degrees". Which is true. I humbly put the protractor down and wonder if I will ever know how he knew that. Sometimes I get dizzy from the speed at which I can go from despair to awe.

I also realize that I have almost come to take it for granted that we can have back-and-forth conversations and that he will actually look at me when he is talking much of the time. Almost, but not quite. One of the silver linings for me of the storm cloud that is ASD is that I have come to see the magic in the mundane. I spent years wondering what his voice would sound like when (if?) he ever spoke. Now, even when he is yelling at me I am in love with the beautiful sound of his voice. Even what seem like such small steps, such as the fact that today he cut with scissors by himself for the first time, are monumental accomplishments in my eyes.

You see, with typically-developing children, these are called milestones that they pass at one time or another and the question is "when". When your kid has ASD there is no guarantee they will ever do these things. In fact, the longer you stare down these milestones the more it seems a miracle that ANY human can do these things. You realize what a miracle every single step is along the path of development and it instills a feeling of pure amazement and awe. It's a bit like flying in an airplane- the more you think about the mechanics of flight, the more implausible the whole thing becomes. I personally get to the point where I wonder when the plane will give up this crazy illusion and plummet to the ground.

Thinking of airplanes reminds me that I am not yet over the fact that on a recent trip to California to visit family and friends, Roo had a panic attack on the plane. I mean a full-out panic attack. Once I got him talked down from it he was still yelling and near panic for 45 minutes. Once we got there I was faced with the question of how to get us home. Like a cold shower, this dilemma brought me back to the reality that although Roo is close to recovered, our lives are still very far away from "normal". Sometimes I can't see straight for jealousy of moms who have never had to contemplate drugging their children just to get them home, only to find out that prescriptions can't be filled from out-of-state. We actually considered having my husband fly to California and rent a car to drive us back home to Oregon. This life can be so absurd. Anyone who wants to tell me what a gift autism is is welcome to pay for the train tickets I ended up shelling out for to replace our non-refundable airline tickets home.

And so the day goes, back and forth. Roo yelling at me over simple misunderstandings caused by his still-delayed language. Roo playing well with friends for several hours without more intervention or assistance than I would expect to give any child. He willingly took part in an arts and crafts activity and enjoyed it for the first time today. While sometimes the smallest of things can trip us up and send the day into a nosedive, it's also the smallest of accomplishments that can stop me in my tracks in amazement. There are times when it feels so isolating knowing how many things come to neurotypical families with what looks to those of on the other side of the looking glass here in autism-land like such ease, but there are also times that I feel almost sorry for those neurotypical parents for not knowing the incredible joy that you get when you see your kid with autism do something that you never knew if they would do at all, even something as simple as enjoying arts and crafts.

The Autism Family

2011-04-16T22:40:00.000-07:00

It's April and therefore Autism Awareness Month once again. This year, there have been some uncharacteristically good pieces done about autism. This one, by Robert MacNeil of the MacNeil Newshour deserves a special note. Many of us have believed that autism will begin to be fairly and accurately represented in the media only once members of the media themselves find their families affected, and this piece about Mr MacNeil's grandson Nick demonstrates that. Nick's mom Alison is a Warrior Mom and she is given room to speak her mind. The piece talks about Nick's regression from being a healthy baby into a very sick child, with mitochondrial dysfunction and severe gut injuries after receiving vaccinations around the age of 15 months. I was also struck both by how much this little boy reminds me of Roo when he was 6, as well as what his sister has to say about being a sibling of a child with autism. That part breaks my heart as I know that Roo's older brother has lived under the shadow of autism and I know how true this sister's perspective is about life as the sibling.

Watch the full episode. See more PBS NewsHour.

SPEAK supplement from NourishLife

2011-04-02T20:36:00.000-07:00

Thus far I haven't been blogging about specific supplements or specific brands, in part because we have used so many different ones over the years. We began giving Roo omega-3 fatty acids early on and he did very well with them right away. At the time we gave him one called Coromega mostly because it was easy to give (it comes in a small packet as an orange-flavored pudding that has no "fishy" taste). Coromega was easy to give, convenient, and we were able to mix other supplements into it. However as our dietary intervention evolved it no longer became feasible to give (I'm not sure but I tink it contained sugar). EFAs in this form were so effective that I would joke that there was a word in every packet.

We continued Roo on standard fish oil, but in the summer of 2009 I decided to begin a new combination supplement called SPEAK. It has high levels of omega-3s, vitamin E, vitamin K2, and borage oil (an omega-6) among other things. We saw a clear and nearly immediate jump forward when we began SPEAK and each time we increased the dose. When I first upped Roo's dose from one to two capsules, he ran a high fever for at least 4 days. He had barely had any fever since his regression which we have taken as a sign of a weak immune response. Every time he has spiked a fever he has had remarkable progress which is common for "viral kids" which we know Roo is. After this prolonged fever he emerged changed- something had definitely been killed off that was holding him back. For this reason I believe that SPEAK has immunologic activity.

I eventually did decide to take Roo off of SPEAK and try to recreate the blend myself as it is costly. He did alright with this although I'm not sure I saved any money and he did not lap forward as he had with SPEAK. In December of 2010 I put him back on SPEAK and once again he responded immediately. We saw a big jump in asking questions, especially abstract ones and "wh" questions. Within one month his articulation had improved dramatically and he was able to talk in his classes on topic and intelligibly. He is now, as of the spring of 2011, taking 3 capsules per day and he is talking non-stop. His toys are having intelligible conversations during play, and his imaginative play has improved dramatically. He built a lego "space station" about 4 weeks ago and has kept up an ongoing game with it since then.

Each two capsules of SPEAk contains:
725 mg of EPA
275 mg of DHA
60 mg of GLA
500 I.U. of alpha d-tocopherol (a form of vitamin E)
200 mg of gamma tocopherol (another form of vitamin E)
2 mg of vitamin K1
300 mcg of vitamin K2

To learn more about SPEAK go here. They have an introductory offer where you can get two boxes for the price of one.

I think that the vitamin K2 may be one of the most important components for Roo. K2 is produced by good flora in the gut and therefor is probably low in anyone with gut damage and dysbiosis. K2 can be found in pasture butter (butter made from the milk of cows that were eating growing green grass) and fermented foods. K2 seems to do many things in the body, but many of them seem to relate to how calcium is used and absorbed in the body. K2 seems to help the calcium be put in the right places and not in the wrong places. I have wondered if K2 helps to address high histamine because calcium draws histamine out of tissues and into the bloodstream where it can be neutralized or excreted. Perhaps low K2 keeps calcium from being available for this function? There is also evidence that K2 helps reduce oxalate problems, most likely by shutting down endogenous production of oxalate in the liver as a byproduct of metabolism. I plan to research this theory further and do a post about it.

Vitamin E has also been known to be an effective treatment for oral dyspraxia for quite a while. Roo has not been diagnosed with dyspraxia, but speech has been one of the hardest things for him to develop so I do think it is relevant to him at some level. Research published in 2009 found that vitamin E supplementation was an effective treatment for a subset of children with verbal dyspraxia. The researchers note that vitamin E deficiency is known to create a constellation of symptoms matching those common in kids with oral dyspraxia including speech difficulties, sensory processing challenges, and abnormal pain sensations. To read more about this research, which includes a discussion of doses and safety, go here.

The Linus Pauling Institute has more information on vitamin E here. It seems that the primary role of vitamin E is to protect the fats in cell membranes from damage by oxidation, which leads to inflammation. Oxidative stress and inflammation are central biological features of people with autism (and other neurological issues) so it makes intuitive sense that it would help. Additionally, vitamin E helps LDL to transport cholesterol from the liver to tissues in the body were it is needed. Cholesterol is necessary for hormone production and repair of tissues (among other things) which may be another way in which it helps with speech. Vitamin E has also been found to increase vasodilation which may lead to better blood flow to the brain (a common issue in autism) as well as aiding in the function of certain immune and inflammatory cells.

New Class Beginning for the GAPS or SCD Healing Diet

2011-03-17T14:11:00.000-07:00

I haven't written up our experiences healing with the GAPS diet yet, but what GAPS did for us was truly amazing. In short it gave Roo a huge leap forward, especially socially. Within the first few months it was as if he "woke up" to the social world around him. He suddenly wanted to join in and suddenly possessed social skills that we had never thought he had. I feel that before this, it wasn't a lack of skills that held him back as is commonly thought of with autism, but rather there was something present (gut dysbiosis) that was suppressing those abilities in him. Once the suppressing factor was removed it was like a spring being released and he just shot forward faster than he could have learned new things. This same phenomenon has been seen in other people with autism, for example Sue Rubin describes how when she learned to point and spell to communicate she was suddenly able to "speak" in such a s short period of time that she couldn't have been learning from scratch, she must have had some knowledge of language within her that she was suddenly able to tap into (to learn more about her amazing story see the movie Autism is a World).

In addition to Roo's significant social gains, he made gains in many other areas as well including language and play. He became so much happier and began to literally walk with a spring in his step. His anxiety decreases significantly. GAPS also healed our histamine sensitivity slowly, and by one year into the GAPS diet we could begin eating many high histamine foods again. The GAPS diet also helped me recover partially from my ME/CFS symptoms. I believe that many of my symptoms are caused by the presence of opportunistic infections that have run wild in me due to my suppressed immune system. I do not know if I will ever be able to heal my immune suppression, but I do know that I can do a lot to keep those opportunistic infections at bay. The gut is the biggest immune organ in the body and healing it has helped me so much.

I will do a post soon with more information and resources for anyone interested in learning more about the GAPS diet, but in the meantime I wanted to post a link to a new class that is going to start online that can help a person new to this dietary approach navigate it. This diet can be daunting and confusing and having others to do it along with you can make all of the difference. For anyone interested, I also have another blog that I share with a friend that has our recipes for the GAPS diet: http://grainfreefoodie.blogspot.com/

Addressing ADHD With Dietary Changes

2011-03-14T18:53:00.000-07:00

A study was recently published in the medical journal The Lancet that found that special diet was an effective treatment for ADHD in 64% of cases. To read more about the study, including the methodology and specifics about the results, click here. While the results of the study are interesting and support what many of us already know- that many behavioral or emotional symptoms are the result of underlying physiology- the perspective of the lead author Lidy Pelsser is what really caught my attention:

"ADHD- it's just a couple of symptoms, it's not a disease. We should look for the cause of it. Like in eczema, the skin is affected, but a lot of people get eczema because of a latex allergy or because they are eating pineapple or strawberries. And I think there is a paradigm shift needed, if a child is diagnosed ADHD we should say okay, we have got those symptoms, now let's start looking for the cause."

According to her research, 64% of children improved from the dietary intervention used in the study. She concludes that this means that the reactions to food are the cause of the ADHD, I would argue that the reactions are the result of underlying biochemical issues that lead to the food sensitivities. The reason this matters is that if you conclude that the food is the cause, then the solution is to remove the foods indefinitely. If you view the reactions as a result of another cause, you can try to identify and heal the cause so that the child can then eat the foods again.

The other comment that I have regarding this study is that it is not entirely clear what the effective special diet that they used was based on. There are many different ways that various foods, and categories of foods, can lead to symptoms of ADHD. If one dietary approach doesn't work, or leads to only limited improvement, there are many other possibilities to explore. There is no "one diet" for ADHD, just as there is no "one diet" for autism. The optimal diet for each person is highly individualized and you cannot conclude that "diet doesn't work" for someone- just that "what has been tried so far has not been the right thing".

Making Sense of Probiotics

2011-03-10T20:57:00.000-08:00

The website for Klaire Labs has a link to an excellent and very informative article about probiotics. To download it in PDF format, go to this page (which has some good basic information on it)- on the bottom to the far right side you will see a link for "Making Sense of Probiotics". It gives extensive information for the different species of probiotic microflora and what they do, including discussions of which strains can help with specific health conditions.

Here is one quote that I found especially enlightening about the role probiotic play in immunity:

"The intestines are the primary immune organ in the body. The bowel-associated immune system contains the largest mass of lymphoid tissue in the human body, a vitally important component of total host immunolgic capacity. Bowel mucosa and lymphoid tissue are closely linked immunologically with gastrointestinal microflora. Substantial evidence associates probiotic bacteria with modulation of host-mediated immune responses. Probiotic bacteria boost both innate and acquired immune responses. These include increases in circulating lymphocytes, stimulation of phagocytosis and antigen-specific antibody secretion, and increased production of interferon-gamma and other cytokines."

Donna Gates on Healing the Liver

2011-03-10T19:40:00.000-08:00

Donna Gates is the woman behind the Body Ecology Diet (BED), which is a healing diet that has many similarities to the GAPS diet. It is a diet that is intended to heal many health issues, including neurological symptoms and autism, by healing the gut and balancing the gut flora. While I personally chose the GAPS diet over the BED and do not agree with every aspect of the BED, Donna Gates is a very knowledgeable woman and an excellent resource for healing. Her book, also called The Body Ecology Diet, is a good reference book with a lot of great information.

Now that I've had so much healing from the GAPS diet I feel that it's time to look at a few of the specific organs and systems in my body that may need additional support to function at their potential. I have been suspecting that my liver in particular needs special attention as I feel that liver problems are at the root of many of my problems. I still have some chemical sensitivities, weight management issues, energy regulation problems, hormone imbalances, and immune challenges. I turned to Donna's book for more information about the liver and how to heal it and this is what she has to say:

What the liver does- "The liver is not just a large filter, but also a biliary organ and an endocrine gland. It plays a key role in digestion, in the formation of blood, and in defending our bodies against infection". (note- Pyroluria seems to have it's roots in blood formation, as according to some sources kryptopyrrole is produced as a side product of hemoglobin formation, so could Pyroluria ultimately be about liver health as well?)

On the importance of bile- "During digestion, your liver secretes bile into your small intestine lubricating your intestinal walls. Bile regulates the level of your friendly bacteria, destroys unwanted and dangerous organisms as they invade your body, stimulates the peristaltic activity that forces your fecal material to move through adn out of your body". (note- it would seem then that having had my gallbladder removed, which is part of this process, may predispose me to poor regulation of gut flora? This may also be an important factor in people with constipation- inadequate bile flow.)

A significant cause of leaky gut is what she calls "toxic bile" that is excreted when the liver is overworked, weak, or otherwise injured. (note-since bile is an essential part of breaking down our food into usable nutrients, toxic bile could result in both more food for pathogens and fewer available nutrients for us).

The liver stores excess carbohydrate as fat. It also "portions out cholesterol according to need and neutralizes its excess".

What else does it do? It regulates body temperature, breaks down old red blood cells and produces new ones, supplies the amino acids necessary to make white blood cells, and regulates the "fluidity" of the blood and how much it coagulates. (note- difficulty regulating body temperature and thick blood are both common traits of people with ME/CFS. Thick blood may be connected with a lowered ability of blood to carry oxygen and also seems to be common n people with autism. Thicker blood also apparently allows pathogens to grow more in it because of the lowered oxygen content.)

Signs of poo liver function include- poor tolerance of cold in winter and possibly poor tolerance of heat in summer, small red flecks that come and go on the body, puffiness between the eyes, anemia, hemorrhoids, inability to maintain average weight, diabetes, jaundice, hormonal imbalances (including problems with menstruation and fertility), headaches and dizziness, alternating constipation and diarrhea, dark or insufficient urine. Also, skin disorders such as eczema, acne, rashes, and hives. Eye problems can occur "loss of elasticity of lens and atrophy of cells within eye lead to sensitivity to light, conjunctivitis, far-sightedness, myopia, cataracts, astigmatism, moving spots, double vision." (note- this is especially important to me as I have most of those vision problems. I am significantly visually impaired.)

If the liver isn't healthy it can't process toxins adequately, which then go on to affect the brain and central nervous system. Symptoms can include depression, spaciness, difficulty concentrating and focusing, and mental health can be affected. I would personally add anxiety and panic to that list.

Some additional signs of liver distress include more frequent urination, difficulty sleeping although being tired during the day, and digestive discomfort at night.

The liver processes everything we take in, and is hurt by the preservatives in our food, the vaccines and other medicines we take, including birth control pills. She says that if a mother has a congested liver during pregnancy that her baby will be born with a congested liver. (note- that may be one of the reasons why kids with autism tend to be born to mothers with health issues already).

To heal the liver, she suggests changing the way we eat, exercising more (her suggestions are gentle though like yoga and walking), taking probiotics, acupuncture, and processing anger. She says that in eastern medical practice, the liver is associated with anger and that holding in anger can damage it. She also says that while healing the liver, anger may appear suddenly. She also suggests cleansing the colon.

She points out that the liver has trouble handling ammonia when it is not well. She advises eating a vegan diet because she assumes that eating animal foods will always overproduce ammonia. This is one are that I disagree with her about. The more I research this claim, the less it makes sense. Also, people who do the GAPS diet, which includes many animal proteins and fats, see great improvement in liver function. Saturated fats seem to be essential for a healthy liver. This will be a future blog post.

Lastly, she emphasized how important it is to have regular bowel movements in order to cleanse the liver. The liver dumps toxins into the colon, and if a person is constipated, those toxins are re-absorbed and sent right back to the liver. I think this may be a major source of overwork for the liver.

The Underlying Biological Causes of Sensory Processing Issues

2011-03-08T22:38:00.000-08:00

There are quite a few possible underlying causes to sensory issues, and since they are interconnected it's hard to know where to begin. One common cause is elevated histamine levels in the blood (which can happen for a variety of different reasons, not necessarily about "allergies"). Among the many things that histamine
does is to regulate the "volume" of sensory input in the brain (ever had sensory auras from a migraine? that's histamine at work). A common source of histamine is an imbalance of gut flora- yeast and many bacteria produce histamine, as well as other toxins that directly alter sensory processing (such as acetyl-aldehyde given off by yeast- acetyl-aldehyde is what causes the feeling of a hangover). In this case healing the gut and restoring healthy gut flora can eliminate the sensory problems. Excessive ammonia in the system is another example.

Inflammation in the brain is also a major issue- the location of the inflammation is what determines what is affected (auditory processing, balance, etc). Histamine is a big part of the inflammatory response so there is a connection there. Neurological inflammation can also be caused by viruses in the brain (especially herpes viruses), or by auto-immune reactions to other pathogens. When the auto-immunity is caused by strep it is called PANDAS and can involved OCD and tics. If a person has a leaky blood brain barrier (BBB), then there are many chemicals (some produced by the body, some from outside) that can get into the brain and trigger inflammation. Mercury is a big one, as is aluminum. Both of those can also cause the BBB to become leaky and allow other toxins or pathogens in.

The chemicals that can be let in can be from foods that we eat (they may also be toxins produced by the imbalanced gut flora, which are often heightened after we eat food that feeds those bad bugs). Some foods contain histamine in them, and the histamine from those foods can aggravate the situation. There are several other categories of foods that can do this including phenols (think Feingold diet and red dyes), salicylates, glutamate (like MSG but there are many natural sources too), and oxalates. Oxalates are a major source for Roo and I. Allergies cause inflamation so it can be simple as an allergic reaction. People sometimes refer to sensory and other neurological issues as "brain allergies".

How you address these causes depends on the person's unique situation biologically as well a what can be made to work realistically. I also want to point out that healing from sensory processing issues does not mean that you lose your perceptiveness. Many people feel that they have a very powerful antenna that brings in more input than they can often handle and they get overwhelmed. Treating the underlying causes doesn't take away your antenna, it just puts you in control of the volume controls. Many people find that when they no longer get overwhelmed, they actually become "more" perceptive in many ways because they aren't needing to avoid or block out stimuli.

Finding XMRV in a CFS cluster

2011-03-05T21:11:00.000-08:00

Many people don't realize that CFS (Chronic Fatigue Syndrome), and the other names by which this disease is known such as Atypical Poliomyelitis and Myalgic Encephalomyelitis, is a cluster illness, meaning that there are outbreaks of many cases close together in a geographical area. This aspect of this illness (or variations of an illness) has been downplayed, perhaps because it strongly implies a contagious etiology.

The Wall Street Journal recently did a piece about Lyndonville, a town in upstate New York that was epicenter to an outbreak of CFS back in the 1980s (a decade that saw many outbreaks). This outbreak has been studied because it was a very large relative to the small population of the town, it struck many young people, and the same small town doctor has been seeing these people for 25 years. It was found recently that 70% of the people in that outbreak tested positive for XMRV. Here is the WSJ piece:

The following video (although overly melodramatic) lists many of the outbreaks of the 20th century that are believed to be ME/CFS. While undoubtedly some of these clusters were other illnesses, and in many cases so much time has passed that there is no way to go back and verify that it is indeed ME/CFS that occurred, I think it is still interesting to see the dates and locations of these outbreaks. The ones that interest me the most are the one in Sacramento, CA in 1975, San Francisco Ca in 1984, and the series of outbreaks around Lake Tahoe and central California beginning in 1984 as it is plausible that I was infected in one of these outbreaks. The sources for the epidemiological data are listed at the end of the video.

Treating Illness or Over-riding Healing?

2011-02-21T23:13:00.000-08:00

I recently watched a video by Dr Chestnut, a chiropractor, that covers the concurrent rise in medical treatment and costs with the decline of overall health in the US and other developed nations. In the US, prescription drug use he says is up 55 times since the 1960s while the population continues to become more and more sick rather than more and more well. He says he has to ask the question whether drugs and surgery are the answer, but we just haven't found the right ones yet, or is the paradigm from which they come flawed? His conclusion is that drugs are generally used to override the body's attempts to heal itself and restore balance, and that this comes from a paradigm of thinking that illness stems from genetic errors and represents a failure of the body that needs to be "corrected" from the outside via drugs or surgery. The subtitle of this video is "Drugs override the body's innate ability to self-heal and self-regulate."

This dovetails perfectly with what I heard in an interview with Dr Thomas Cowan M.D., author of The Fourfold Path To Healing, about healing and medicine. Dr Cowan is an MD who has studied a number of alternative forms of medicine including homeopathy, anthroposophic medicine, and herbal medicine. So many things were covered in the hour-long interview that were paradigm-shifting for me including a whole new way to look at both heart-disease and cancer. Many of the resources and practitioners that I come across have pieces of the puzzle to add- a new perspective on a symptom or illness, a new way of looking at something, a connection that others have failed to see. Dr Cowan has done all of those things but more than anything he can see the "big picture" of health, wellness, and healing, and can convey succinctly his paradigm-altering insights. To listen to the interview click here.

He will be the inspiration for many blog posts, but for now I will focus on one of those "big picture" questions that he posed- "are we treating the disease or the therapy?". What he means is that many of the symptoms that we see are reactions by the body to an insult or injury and are an attempt by the body to compensate or heal these underlying problems. To illustrate his point about which is the disease and which is the therapy, he used the simple example of a splinter. If you get a splinter in your finger and don't remove it, your body will produce pus around it. The splinter is the disease and the pus is the body's "therapy" or attempt to correct the problem. Removing the splinter is treating the disease, draining the pus is treating the therapy instead. The body's therapy or compensation strategies are what we call symptoms, and while not the disease itself, tend to be mistaken by allopathic doctors as the disease process and thus the target of allopathic treatments (drugs or surgery). Other examples would be giving fever-reducing medication rather than supporting the body in fighting off an infection, giving laxatives for constipation rather than addressing the disordered digestive process, and using medications to lower cholesterol rather than figuring out why cholesterol is either being over-produced or under-utilized.

This is the same principle that we in the autism world are referring to when we talk about the difference between treating the underlying cause versus managing symptoms. Don't get me wrong, there is a lot to be said for managing symptom either when the cause has not been found or treating the cause is a lengthy process, but it is not the same thing. Occupational Therapy can help a person work with and work around sensory symptoms that result from physiological illness but won't correct the underlying illness process. This is analogous to a Physical Therapist helping someone to overcome physical limitations from a physical illness or injury. If someone were to step on a tack, a physical therapist could help them learn to walk differently or to find other ways of moving around to avoid pain. A medical doctor could prescribe pain medication to ease their discomfort. But wouldn't the prudent treatment be to remove the tack itself? This is like giving anti-psychotic medication, sleep medication, laxatives, or alerting medication such as Ritalin to children with autism. Why not endeavor to remove the tack itself?

Additionally, addressing the symptoms rather than the cause allows the disease process to continue unchecked and will lead to more and more symptoms as the body continues to try to bring itself back into balance. The first time I remember coming across this concept was in an article in Mothering Magazine when Roo was a baby. The article was an introduction to anthroposophic medicine and was the first time I'd heard of it. I'm sure there were many fascinating things in that article had I been in a place to hear them, but the one thing that really stuck with me was that the minor illnesses of childhood such as fevers were attempts by the body to restore balance. Whether they said this or not I don't remember, but I understood that they arose from homeostatic mechanisms. I have come to realize that the ability of the body to take steps, such as spike a fever to restore itself to balance, is what health is. For years Roo would get sick but never had a fever. I realized that this was not a sign of health but rather a sign of diminished health. He began having fevers again while he was under the care of a homeopathic doctor who was overjoyed to hear of this. Once he began to have fevers we realized that during a fever he would be talkative and lucid, and that he would have major leaps forward developmentally after a fever. This experience drove home to me the truth of my theory that the robustness of homeostatic mechanisms is a measure of health in a person. I have come to see our healing of Roo as being about removing the barriers that keep his body from restoring itself to health rather than "causing" health from the outside.

Microwarriors- A New Film About Probiotics

2011-02-15T13:02:00.000-08:00

There is a new film out about probiotics that looks very promising. Here is the trailer for the film:

This website has more info about the film including a list of books for further information that looks really promising. The film as already available as a DVD and can be ordered here for $9.99. If I get it I'll post a review on here. According to the trailer and site, the film addresses such questions as:

-How the bacterial cells in our body (which comprise 90% of the cells in our body) work together as an additional organ.
-How probiotics offer a treatment alternative to pharmacological agents.
-How probiotics benefit the immune system.
-The potential for probiotics to replace vaccines as a means for inferring resistance to disease.
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A Response to the BMJ's Claim of Fraud in Wakefield's Work

2011-02-13T22:55:00.000-08:00

Professor of Neuroscience at the University of British Columbia, Christopher Shaw, has written an eloquent and scathing response to the recent editorial published in the BMJ (British Medical Journal) alleging fraud in the work that led to the 1998 publication of Dr Andrew Wakefield's paper in the Lancet. The allegations of fraud, by the way, were made entirely by Brian Deer, based on medical records for the children in the study that he claims to have in his possession. These claims of fraud have not and cannot be verified by any one else because no one, including Mr Deer himself, has legal access to those records. Professor Shaw's letter is short, and I highly suggest reading it here, but here are a few highlights:

"There are many possible factors that may have increased leading to rising ASD levels. One of these is the significantly increased vaccine schedule for children. Any a priori exclusion of possible factors based on belief rather than evidence is not scientific, but rather reflects a disturbing trend to view anything associated with vaccines and vaccine policy as sacred and beyond scientific scrutiny."

"Assertions that those who do so in respect to any aspect of vaccine safety must therefore be "anti vaccine" and hence not to be taken seriously belies a belief system that is profoundly unscientific. As most readers will know, an ad hominem attack on an opponent's character or credibility is a tacit admission that the logical argument is lost."

Notes for The Vaccine Detectives, Part 2

2011-02-13T22:30:00.000-08:00

These notes are for the second part of an audio broadcast entitled The Vaccine Detectives done by BBC 4 and aired in January, 2011 (to listen, click on "show all programs" and scroll down towards the bottom of the page). To find out more of the background behind these broadcasts, click here. To read my notes for Part 1 of the broadcast, click here. The simple overview is that Peter Aaby, an anthropologist from Denmark, has been working with a medical team in the West African nation of Guinea Bissau trying to lower the incredibly high child mortality rate (children in Guinea Bissau are 20 times more likely to diet before their fifth birthday then children in Europe are). In this endeavor he and his team have compiled evidence that vaccinations- while generally having positive effects- can have long term effects on the immune system of a child that can be devastating in the long run. Up until now, he is essentially the only researcher to look at the long-term effects of vaccines on the individual and the community. His research (and that of others working in his footsteps) has shown that the effects of vaccines on a child's immune system vary greatly between boys and girls, which is potentially relevant to autism.

The health researchers in Guinea Bissau have conducted clinical trials to determine if giving polio vaccine at earlier ages has an effect on mortality. This interests me because we are told here in the US that the reason that it is not possible to do a vaccinated vs unvaccinated study to see if there are any differences in the autism rate in these two populations is that it is entirely unethical to do any study in which some of the children do not receive the full vaccination schedule as it is recommended by the AAP (despite the fact that enough children already do not receive the recommended schedule to make such a study feasible). To support this point, it is claimed that the recommended schedule represents the most evidence-based approach. But like in Guinea Bissau, the schedule is determined first based on assumptions and tested after the fact. These tests do not always support the original assumptions upon which the recommended schedule is based.

A related example is that the WHO has recommended that babies receive a high dose of vitamin A at 6 months of age because it is believed that this will improve overall immunity. Peter Aaby's team was involved in research that found that giving the dose at birth not only didn't result in the expected 30% reduction in mortality, it actually led to a small increase in mortality. Our assumptions about how babies will respond to substances is not always accurate (I also have to wonder about the vitamin A that was given- it was probably synthetic, which is not used by the body the same way as natural vitamin A). Interestingly, what they also found was that this slight 7% increase in mortality was the result of gender difference. While boys seemed to benefit somewhat from the vitamin A dose at birth, it resulted in a 41% increase in mortality in girls. This was totally unexpected and put a halt to WHO plans to introduce vitamin A at birth to all babies in Southeast Asia. Perhaps more study into this effect will add to our understanding of differences in immune function in boys and girls as infants.

Peter Aaby's team has argued that their findings indicate that DTP lowers the ability of the immune system of girls to fend off other infections, and Christine Ben believes that the reason that vitamin A had such a catastrophic effect on girls when given at birth is because it amplified this effect. Her research was published in the International Journal of Epidemiology, but like other researchers who have found potential issues with vaccination or other preventative health measures, she found journals hesitant to publish her works for fear that the public would hear of it and question what they are told- that all vaccines are safe all of the time, for all children, and that the current vaccination products and programs are founded on entirely evidence-based science. When asked why the WHO is so resistant to follow up on his findings that DTP is harming girls, Peter Aaby responds that they are afraid that if it is found that DTP has a negative effect that it would be devastating on the global vaccination program. I personally think this is an artifact. If the current vaccine program was presented the public with transparency, as being the best we are able to do right now but that we are always searching for ways to make it better and safer, I still think there would be widespread support for the program. Because the program is based on trust, I think the thing that threatens it most is any behavior on the part of those who determine and administer it that they are hiding something or limiting research that could lead to greater safety.

Peter Aaby's work has opened up the question of gender in vaccine response. Vaccine studies have normally been done on men only because women are at risk of getting pregnant. Additionally, women's hormonal cycles are known to play a role in immune response and they didn't want this interfering with the findings. Animal studies also use just one gender. Kim Mullhulland, an Australian vaccine expert, says that the politics of vaccine programs and the need for public acceptance have made it hard to have a scientific discussion about aspects such as the non-specific effects that Peter Aaby's team is finding. He blames what he calls "anti-vaccine movements" for necessitating propaganda on the part of government health organizations in order to counter what he calls the propaganda of these organizations. Yes, there are some who do call for an end to vaccination entirely, but this is not a large and powerful group and it is laughable to think that they are determining public health approaches. The larger voices are not anti-vaccine, they are pro vaccine safety. They are groups that do not believe that vaccine safety is as simple as we are told by health authorities and the media. They are groups who want to see vaccination programs be as safe as possible for all children. It is absurd for Mr Mullhulland to suggest that we can't have a public discussion about making vaccines as safe as possible because there are groups who want to see vaccines be as safe as possible. The narrator also points out that this is a dilemma for the pharmaceutical companies (who make billions of dollars on vaccines per year) and large funders of vaccine programs, such as the Bill and Melinda Gates Foundation.

The question arises, that if vaccines and micronutrients such as vitamin A can interact with each other in ways we don't understand, how do we test all of the possible combinations for safety? Paul Fine, a professor at the London School of Hygiene and Tropical Diseases, is one of Peter Aaby's strongest critics and responds to this question that focusing too much attention on these "nonspecific" effects of vaccines could keep children from getting vaccines that they need to keep them alive. If it's true that giving vitamin A at birth led to a 41% increase in mortality in girls, and that the DTP is causing a significant increase in the mortality rate of girls possibly due to it's interaction with other vaccines, then it hardly seems that ignoring these findings is denying children the best outcome.

Additionally, he says "we're talking very soon about, even in developing countries, them receiving ten vaccines, but I would say here, one does need judgment, because it's too easy to say "oh we must first work out all the possible effects of all the possible combinations", but I think that would just lead to paralysis in terms of moving ahead. We can always increase the level of vigilance- no one is saying we want LESS vigilance". While vaccine programs in the developing world are not the same as those in developed countries, this attitude of set up the schedule first and then research (or not) later does seem to be something they share. He says we need vigilance, I am guessing as far as monitoring adverse events goes? I heartily agree with that. I think he does have a point that in developing countries, it may be prudent to balance fast action with research such that help arrives before it is too late. The WHO's reluctance to look further into Peter Aaby's findings does suggest to me that the level of vigilance here is wanting. This is another parallel with developed countries, in which monitoring programs are seriously lacking in vigilance and as such not picking up on potential problems.

Peter Smith, of the WHO's Advisory Committee on Vaccine Safety, says "you have to ask yourself the question, if this was your child, and it was participating in a trial that had been randomized to vaccine or placebo, and it had been very clear that this vaccine is protective against the condition that it was designed to be protective against, would you want your child to have that vaccine or would you want to maintain that child to be unvaccinated against the possibility of a non-specific effect which may be greater than the effect of the vaccine itself? I think those are very difficult public health questions in which it's not straightforward to answer".

The researcher Christine Ben raises an alternate version of the question- once research has shown an intervention to be harmful, does further study into it needlessly place the lives of thousands of children at risk? After her study was published showing such an astoundingly high rate of mortality for girls following a neonatal dose of vitamin A (and another retrospective study confirmed the findings), the WHO has commissioned three large studies to re-test the same hypothesis. While scientifically it is valid to replicate findings, when those findings involved such a high rate of death, is not unethical to attempt to replicate it? She estimates that about 30 girls died as the result of receiving the experimental early does who wouldn't have otherwise. Since the new studies are 15 times larger, does that mean that the lives of 450 girls are at risk in order to confirm or refute the findings? It's hard to see how this is considered ethical when a study in the developed world, of children who are already unvaccinated vs those who are fully vaccinated is considered so unethical as to be unthinkable? It sure looks as though the lives of children in developing nations are given less value.

There is one last similarity between the vaccination programs of the WHO in developing countries and the trials done in around that program, and the vaccination programs of developed countries, which is that of informed consent of parents. It turns out that parents of the children in the new studies are not being told about the outcome in Guinea Bissau that led to these trials. It is not considered relevant to them to now about the potential risk that participating in this trial is conferring on their daughters. Dr Ball of the WHO said "as far as the informed consent process is concerned, the families are given information in a way that they can understand- that is all the information that is relevant to be given to families...is being given to the families". He goes onto say that it is not possible to give the participants in the new trials information about previous trials.

Recently, 36 leading scientists from 12 countries collaborated to put together a research agenda to look deeper into the non-specific effects of vaccines. This agenda includes trials to review the safety of DTP as well as further study into why boys and girls seem to react differently.

Notes for The Vaccine Detectives, Part 1

2011-02-11T22:00:00.000-08:00

To listen to these shows, which aired on BBC 4 radio in January of 2011, go to this page, click on "show all episodes" and scroll down- they (parts 1 and 2) are towards the bottom of the page. Here are my notes of some things that caught my attention from Part 1:

Peter Aaby is a Danish anthropologist who has been working in Guinea Bissau, a nation with some of the worst health statistics in the world, for at least 30 years. He has been researching vaccines and their effectiveness during this time, trying to figure out what works and what doesn't. He has been looking at the long-term effects of vaccination and noticed that micronutrients and vaccines may have far-reaching and unforeseen effects, that can determine a child's survival. The question is raised about how the many vaccines given may be interacting with each other an causing unforeseen effects. It is important to note that he is NOT anti-vaccine- he began his scientific career in Guineas Bissau by demonstrating that the extremely high child mortality rate was from disease, not from malnutrition, and set out believing that vaccines were the solution.

One person interviewed in the story says of Peter Aaby's work "If it all gets accepted in the end, and proven, it will be a paradigm shift in the way we think about vaccinating children...and paradigm shifts in the scientific community are very frightening". Another person in the podcast says that the question of whether vaccination could be done differently, could be done better, is really threatening the whole system of vaccination.

One thing that he has noticed is that the order of vaccines can make a difference, and which one was last administered before an illness sets in. For example, if a girl comes into the hospital with pneumonia, she is more likely to survive if her last vaccine was for measles rather than DPT. The chances of fatality depend on the vaccination stages. The narrator of the show says that a recent editorial in the BMJ compared Peter Aaby to Galileo , which is profoundly ironic because this show aired the week that the BMJ ran papers by Brian Deer claiming that Dr Wakefield's work was fraud. The report goes on to say that while some scientists see him as a risk to the global vaccination system, the lives of tens of millions of children are at stake.

The report discusses Peter Aaby's involvement with a WHO trial for a new measles vaccine. The original results looked good- the vaccine seemed to work- but he decided to leave the study open to see what the long-term effects of the vaccine were on the community, to see whether t actually reduced mortality, a thing that few if any vaccine researcher had ever done before. What he found is that girls who had received the vaccine were dying at much higher rates, not from measles, but from other infections. The vaccine seemed to have a detrimental effect on the immune system of girls. The WHO withdrew the new vaccine, which they say may have saved tens of thousands of lives. After studying why this had happened, he discovered that it was the result not of the new measles vaccine itself, but of its interaction with the DPT vaccine (this is one of the most widely given vaccines in the developing world). He believes that the DPT is weakening the immune system of girls and increasing the rate of death 50% above what it would otherwise be.

The WHO sent a team to review Peter Aaby's findings, led by Kim Mullhulland, who found nothing wrong with the research. Kim Mullhulland is now a professor at the world-renowned London School of Hygiene and Tropical Medicine. He says that when he returned to WHO headquarters, officials there were dissapointed that he had not found problems with the data or research. He says he was never asked to present his findings and there was not much interest shown to what he had found, which surprised him. He says that he realized that "our findings were not well received". While Kim Mullhulland's team concluded that the results of Peter Aaby's studies were reliable, and could not be explained by error, the WHO took an official position that the findings could neither be confirmed nor denied, and that no further action was necessary. Kim Mullhulland says he is deeply troubled by the lack of action on the part of the global community to further research or act on what could be causing an alarming rate of mortality around the world.

When asked, Peter Smith, who is the chair of the WHO's Global Advisory Committee on Vaccine Safety, said of the potential risk of DPT "I think the evidence for the deleterious effects of DPT, in those settings (high mortality settings) is not totally convincing". When asked if it is fairly convincing, he responds "it's sufficient to justify further study". He then tries to clarify that the evidence is not convincing, but that he is not saying that the effect does not exist. He also says, and this deserves a drum roll..."I mean, one has to keep a reasonable open mind with respect to any adverse effects of vaccines".

The narrator says that "all of the scientists I spoke to said that they were also nervous about speaking publicly in case it set off a fresh vaccine scare". Kim Mullhulland says that immunization as a package has been immensely beneficial to the world;s children, "whether we could be doing it better, whether we could be using vaccines more efficiently or in a different way..or in a safer way...those are the questions that we're dealing with here". The narrator also points out that possibly re-ordering the vaccine schedule could mitigate unintended negative consequences. He also says that the "wider issue is the way that all vaccines and vitamin supplements may affect the immune system in unpredictable ways".

Peter Smith of the WHO Vaccine Advisory Committee points out that because no one else has done this kind of research, or looked at long term effects of vaccines, nearly all of the data has been amassed by Peter Aaby and his team, which causes some to be suspicious of it- calling it an "Aaby effect". This problem may be resolving itself, as "36 leading scientists have formed a group calling for a much closer look at the non-specific effects of vaccines" including Katie Flannagan (who is an immunologist for the British Research Council and a lecturer at the Imperial College of London), who says "in fact, surprisingly we know very little about how many of the commonly used vaccines actually work. Also, the developing immune system in a baby has for many years been very difficult to study, because it's very difficult to get blood samples from these children." She is looking for biological evidence of Peter Aaby's findings. Her findings are that "we are seeing clear differences in the actual inflammatory profile if you give the vaccines together, the DTP and the measles, compared to giving measles alone, and the effects are completely different in boys and girls". She goes on to say that she is seeing clear immunological patterns supporting Peter Aaby's findings.

Peter Aaby and Long-Term Vaccination Effects

2011-02-11T20:19:00.000-08:00

In January, BBC 4 radio aired a program entitled "The Vaccine Detectives: Part 1 and 2" which is discussed in the article "The Vaccine Casebook" (note- to listen to the podcasts, click on "show all episodes" and scroll way down). It is a report about a researcher in the African nation of Guinea Bissau, named Peter Aaby, who has been studying the long-term effects of vaccination and has found (as the article puts it) "evidence that could change public health care forever. They have discovered that vaccines and vitamin supplements have unexpected effects - good and bad - on the immune systems of children." As an aside, I find it fascinating that this report was aired the same week that Dr Wakefield was once again being raked over the coals and we the public were once again being assured that all vaccine are safe all the time. Here is a larger quote from a brief article about the radio program:

"Their health detective work has generated more than 600 scholarly articles in the world's leading medical journals, and been responsible for the withdrawal of a potentially deadly measles vaccine by the World Health Organisation.

But the WHO has not acted on the most explosive findings yet coming from Guinea Bissau. They show that the world's most commonly used vaccines can strengthen - or weaken - a child's immune system in the long term, and affect their ability to fight off disease. The results directly challenge the WHO's global health advice, followed by most countries in the developing world, and could mean that thousands of young lives, in Africa and beyond, are needlessly at risk.

We'll hear from some of world's most respected public health scientists who back Aaby's findings. The documentary also asks why the WHO has not yet acted on the evidence generated so far. And whether safety tests for new vaccines and vitamin supplements, heavily promoted by donor agencies and pharmaceutical companies alike, are sufficiently far-reaching."

To read my notes of Part 1 of the broadcast, click here. For my notes on Part 2, click here. One thing that was discussed in the program was that the health project that Dr Aaby directs was selected in the past as a test site for a new measles vaccine that the WHO wanted to test out. The trial for the new vaccine ran for a short period of time, and at the end it looked as though the vaccine was a success. However, Dr Aaby decided to keep his part of the study open to see if there were any longer term effects. What he discovered was that while the vaccine seemed effective in the short run, in the long run children who received it were dying at a much higher rate. When the WHO heard about this they pulled the vaccine from use, saying that it may have saved thousands of lives by going back to the previously used measles vaccine. This raises the question for many people whether vaccine studies are done for a long enough time to pick up on the potential health risks.

The program also discusses another finding that Dr Aaby has made- that the DTP vaccine used in Africa may actually be doing a lot of harm (he mentions that it is a vaccine for Diphtheria, Tetanus, and Pertussis, but I don't know which formulation it is). He has found that children who have received either this vaccine or the polio vaccine have a higher mortality rate then children who haven't received it. The abstract for the study, which was published in the British Medical Journal, can be read here. Below the abstract are comments which are interesting. One comment, entitled Vaccination and Immune Balance, suggests this possible mechanism to explain Aaby's findings:

"Dear Sir - The findings of Kristensen et al’s study(1) fall into place if there is a preexisting Th1 weakness / Th2 predominance of immune response in the community.

That there is such a pre-existing condition in many parts of Africa is supported by the remarkable susceptibility to tuberculosis, measles, and HIV infection, all of which depend on a good Th1 response for successful resistance. BCG and measles vaccine, by stimulating a swing toward Th1 response, may in fact be returning the immune system to a relatively normal balance; diphtheria, pertussis, tetanus and polio vaccination stimulate a Th2 response, and may swing the immune system further away from the ideal balance, and inhibit a good Th1 response."

I find this hypothesis fascinating as it seems that babies born to Th2 shifted mothers in developed countries are more at risk for developing autism, and that the DTaP is one of the vaccines that parents most often site as precipitating regression. Could this be why? Interestingly, the same commenter also had this to say:

"Dietary reasons why this preconditioning may exist have been put forward. In an otherwise deficient diet, heavy dependence on maize geographically parallels high incidence of diseases which should be resisted by the cellular immune response. A maize dependent diet is weighted so strongly with n-6 fatty acids that an excessive output of Prostaglandin E2 will occur unless there is also an adequate intake of other fats. Prostaglandin E2 is a suppressor of Th1 function (2). Children with kwashiorkor, an extreme example of what is usually a maize- diet malnutrition, have been described as having a "nutritional thymectomy"(3), and may have no demonstrable cellular immune response to tuberculin during the acute phase of their illness."

This is also fascinating as some people have postulated that the widespread use of corn in the American diet in recent years may be a predisposing factor causing some children to be more at risk of having an adverse vaccine reaction. If high amounts of corn in an otherwise nutritionally inadequate diet (which many US babies and children have) is capable of suppressing Th1 function that is very significant. I found this cooment, from another commenter, interesting as well:

"The death of 4% of a nations children due to the use of a vaccine to save life is nothing short of a major catastrophe.

The only other case which immediately comes to mind is the 2% deformity rate due to the use of thalidomide back in circa 1961.

An immediate connection then comes to mind. In the thalidomide case and in respect of tetanus, (also diphtheria) a toxic compound is at the heart of the problem.

The solution here is easier, however - we need to look at the purity of the vaccine, the age of infant, the amount used, the strength, be more careful about possible adverse reactions, where it is administered (can it enter the bloodstream rather than beneath the skin and with what result) and so on.

The use of the DTP vaccine could also by analogy easily explain the daily death rate put down to cot death in the UK?

The amount of tetanus toxin to cause death is microscopically small compared to the 0.5 gram injection commonly used. The time to cause death is never immediate and may be 5 hours or as long as three or four days. the link is therefore denied. Because we assume or accept Cot Death or put mothers in jail for murder are we missing a similar response to UK DTP vaccination?

The same vaccine used on teenage children in the UK caused over 90% adverse reactions with systemic symptoms including difficulty in getting breath, when administered in the 1990s.

This research again answers the simple question: are toxic chemicals toxic to life.

The answer is clear:

Toxic chemicals are indeed clearly toxic.

When will we realise this and take appropriate care and control?"

Journal of Infectious Diseases Reports on the Status of XMRV Research

2011-01-30T20:43:00.000-08:00

As those of you who follow developments in the progress of research into the recently discovered retrovirus XMRV and human disease are aware, lately there has been a great deal of confusion about what the correlation is if any. The original Lombardi et al paper that came out of the Whittemore Peterson Institute, and was published in the journal Science, made a strong case that XMRV is associated with human disease. Several follow up studies did not corroborate this finding, but have numerous methodological errors and serious conflicts of interest. Much of the confusion in the mainstream media seems to have arisen because they received PR announcements when these studies were published (after a delay), but did not do research to understand what has transpired during the delay nor to establish the context of these studies, and they are unaware of the Harvard/NIH study that supports the original WPI findings. As a result, there has been widespread dismissal of the original research as being nothing more than contamination from mouse genes.

Ongoing research will hopefully clarify the (probably complex) relationship between XMRV and other murine retrovirsus with their potential to cause disease in humans. In the meantime, the Journal of Infectious Diseases has written up a summary of the research so far and what the implications may be. Although this summary is conservative, it is a fairly helpful guide. This summary gives more background of the research involving prostate cancer, which may be more relevant to ME/CFS then it seems at first glance since ME/CFS leads to an elevated risk of cancer (often lymphomas or brain tumors), so the possible cancer connection is interesting to me. The research so far on XMRV's role in prostate cancer seems to indicate that the mechanism by which XMRV acts to promote cancer is complex rather than the simple triggering of an oncogene, or insertion of a DNA strand to trigger the cancer, that some retroviruses are known to do.

This report sheds some light on why the findings of XMRV ( and other MLVs) in the human population may vary so much. "Several factors may contribute to the varied detection of XMRV in different populations, including geographic distribution, patient selection, analyte choice (DNA, RNA, antigen), and detection methodology." Additionally, they add "viremia may be chronically low (as it is in HTLV), transient, or episodic, complicating detection." The Journal then proceeds to list out measures that would help in the future to resolve the issues caused by the variability of detection so far including standardized assays, independently confirming results by sharing and retesting the same samples, doing prospective studies to asses which populations should be studied, and figuring out how the various Murine endogenous retroviruses are related to each other. They also point out that when it comes to the challenge of finding and confirming specific disease causation, this is much more challenging to do with retroviruses than it is with other pathogens that have a more basic mechanism for causing disease.

This blog post entitled "The XMRV Hunt and Me" explores some of the possible reasons why a very sick patient may test negative but still have disease caused by this retrovirus. Mary Schweitzer (a particularly knowledgeable patient and advocate) has pointed out on her blog that HIV was first detected in lymph tissue rather than blood, and as chronically swollen lymph nodes is a classic sign of ME/CFS, it might make sense to look there. She also points out that evidence from France indicates that the virus may pool in the lungs. The NICEGUIDELINES blog points out that because XMRV is slow-replicating it is important to locate reservoirs and the virus may need to be brought out of latency.

Here are some other interesting tidbits from the report:

"Analyses of XMRV sequences from different sources have revealed limited genetic diversity among patients. Because retrovirus diversity is dependent on cycles of error prone viral replication, the absence of XMRV genetic variability suggests that multiple cycles of infection are not taking place in humans."

"these data suggest that XMRV had zoonotic origins in mice but has replicated to only to a limited degree in humans."

"With respect to therapeutics, XMRV is sensitive to some antiretrovirals in vitro [11, 20, 29], and there are calls for use of antiretroviral agents for therapy, even though early observations suggest XMRV replication may be minimal in humans." This statement is followed by an admonition NOT to use these drugs on patients outside of carefully controlled clinical trials. This idea has been hotly argued within the ME/CFS patient population for many reasons.

Brain Food

2011-01-26T19:43:00.000-08:00

I did an earlier post about the healing power of foods, a topic of endless fascination for me, but in particular the effects of our diet on our brain and mental/cognitive function is of particular interest to me right now. This interest is what brought me to the GAPS (Gut and Psychology Syndrome) Diet two years ago and the healing that I witnessed in my whole family has reinforced the significance of diet for the health of the "mind". I will do a full post about GAPS soon, but for now I will say that there were three parts to it's healing power for the brain. First, we removed things that we were eating that were disrupting mental function, such as sugar and various elements of processed foods. We also removed foods that were feeding the bad flora, which would use that food to churn out neurotoxins, and third we included foods that have components that nourish the Central Nervous System such as saturated fats and amino acids.

Recently, a new post on one of my favorite blogs- Nourished Kitchen- caught my eye. The post is about the blogger's husband's recovery from Bipolar Disorder thanks partly to the power of eating foods that nourish the body and brain and support healing. There aren't many details of specific foods that were included, but I wanted to include this post here because I feel that it is important to hear real stories of real people regaining their health. It is great to read the science, but sometimes it is also important to put a human face on top of all of the abstractions. The blogger says that she is telling this story, despite how hard it is to bare one's private life so publicly, because she feels these stories need to be told. That same sentiment is what drives my writing of this blog- to spread the word that healing (whether in part or in whole) is possible.

A study published in the journal Nature Reviews Neuroscience looked at more than 160 studies of the effects of food on the brain. Here is the abstract of the study:

It has long been suspected that the relative abundance of specific nutrients can affect cognitive processes and emotions. Newly described influences of dietary factors on neuronal function and synaptic plasticity have revealed some of the vital mechanisms that are responsible for the action of diet on brain health and mental function. Several gut hormones that can enter the brain, or that are produced in the brain itself, influence cognitive ability. In addition, well-established regulators of synaptic plasticity, such as brain-derived neurotrophic factor, can function as metabolic modulators, responding to peripheral signals such as food intake. Understanding the molecular basis of the effects of food on cognition will help us to determine how best to manipulate diet in order to increase the resistance of neurons to insults and promote mental fitness.

Recently an article appeared in the UCLA Newsroom newsletter about this study and its author, Fernando Gomez-Pinilla, who had this to say "Food is like a pharmaceutical compound that affects the brain...(d)iet, exercise and sleep have the potential to alter our brain health and mental function. This raises the exciting possibility that changes in diet are a viable strategy for enhancing cognitive abilities, protecting the brain from damage and counteracting the effects of aging." This article focuses mostly on findings relating to omega-3 fatty acids, but also includes some other interesting findings as well. Here are some highlights from the article:

"Omega-3 fatty acids support synaptic plasticity and seem to positively affect the expression of several molecules related to learning and memory that are found on synapses...(o)mega-3 fatty acids are essential for normal brain function."

"Dietary deficiency of omega-3 fatty acids in humans has been associated with increased risk of several mental disorders, including attention-deficit disorder, dyslexia, dementia, depression, bipolar disorder and schizophrenia,"

"Scientists are learning which omega-3 fatty acids seem to be especially important. One is docosahexaenoic acid, or DHA, which is abundant in salmon. DHA, which reduces oxidative stress and enhances synaptic plasticity and learning and memory, is the most abundant omega-3 fatty acid in cell membranes in the brain."

"Recent research also supports the hypothesis that health can be passed down through generations, and a number of innovative studies point to the possibility that the effects of diet on mental health can be transmitted across generations"

"Evidence indicates that what you eat can affect your grandchildren's brain molecules and synapses...(w)e are trying to find the molecular basis to explain this."

"Controlled meal-skipping or intermittent caloric restriction might provide health benefits. Excess calories can reduce the flexibility of synapses and increase the vulnerability of cells to damage by causing the formation of free radicals. Moderate caloric restriction could protect the brain by reducing oxidative damage to cellular proteins, lipids and nucleic acids" (note that this is referring to something intermittent, NOT calorie restriction on a daily basis).

"Adequate levels of folic acid are essential for brain function, and folate deficiency can lead to neurological disorders such as depression and cognitive impairment. Folate supplementation, either by itself or in conjunction with other B vitamins, has been shown to be effective in preventing cognitive decline and dementia during aging and enhancing the effects of antidepressants. The results of a recent randomized clinical trial indicate that a three-year folic acid supplementation can help reduce the age-related decline in cognitive function."

Books on ME/CFS

2011-01-21T23:17:00.000-08:00

While I haven't read either one, these are two books that look promising about ME/CFS. The first is just released, called "Lost Voices". Here is the site with more info about the book and a link for ordering:
http://www.investinme.org/LostVoicesBook/IiME%20Lost%20Voices%20home.htm
The book contains stories and photographs by and about people suffering with severe ME/CFS, who are either house-bound or bed-bound, and their caregivers and families. The idea behind the book is to give these people the chance to speak about their situation in the hopes of increasing awareness of what this disease really is for for both the general population and the medical community.

The other book is called Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, by Hillary Johnson. This book is apparently more focused on the history of events of this epidemic and the politics that have plagued it. She goes into great detail about the way this new disease was handled (or not) by the CDC and the NIH and the ways that research into it's cause has been derailed.

New Developments in XMRV 1/19/11

2011-01-19T23:17:00.000-08:00

This piece by Paula Carnes, called "Testing Negative, Staying Positive" gives a lot of new information about being tested for XMRV. She elaborates on why some people are testing negative, how the disease seems to be working in the body, and some promising leads for treating it. Here are a few highlights:

"-XMRV leaves the blood and hides out elsewhere in the body until you are stimulated with another infection. [This could explain that the early outbreaks at Incline Village, NV, Lyndonville, NY and Raleigh, NC were caused by a secondary contagious infection superimposed on an existing XMRV infection.] Replication of XMRV is stimulated by inflammation and hormones.

-The retrovirus(s) has a high level of sequence diversity or different strains. The NIH (Alter and Lo) found a P (polytropic) MRV strain. This means that if you are infected with the PMRV strain you will currently test negative at The Whittemore Peterson Institute (WPI). Mikovits is working to develop more accurate testing for both strains. She hopes to have a test for PMRV by June 1, 2011.

-Possible infections that enable XMRV to multiply would include EBV, HHV6, borrelia, babesia, bartonella, other?

-In chimp studies the virus very quickly left the blood and went into reservoirs, lymph node, spleen, liver – maybe thyroid, sex organs, adrenal glands, salivary glands, brain.

-Stress elevates cortisol levels which would in turn activate XMRV.

-Some patients have a positive culture test but no antibodies. If they are treated and begin to get better antibodies for XMRV will show up.

That article mentions another blog post in which a study is discussed showing evidence that XMRV may be a tick borne disease, here's a quote:

"Recently, a small study has revealed that ticks might be one way XMRV is passed on. The study is being done by Dr. Eva Sapi and Dr. Joe Brewer. The connection was discovered with a sample of chronic lyme disease patients showing 90% infectivity rates with XMRV and MLV's. It is coincidental that the symptoms of Chronic Lyme, and Chronic fatigue syndrome are almost impossible to differentiate. It also explains why despite antibiotic treatments, these patients fail to show improvements. Ticks are already known to carry a form of viral encephalitis."

An Autism One Interveiw with Dr Wakefield and Others

2011-01-17T01:02:00.000-08:00

the following program entitled "What in the World is happening to Andy Wakefield?" played on AutismOne radio on January 11th, 2011. The host, Teri Arranga, interviews 4 people including Dr Andrew Wakefield, Dr Vicky Debold of the National Vaccine Information Center, Wendy Fournier of the National Autism Association, and JB Handley of Generation Rescue, on various topics around the controversy of vaccine safety and more specifically the role that vaccines may play in autism. I transcribed some parts of the show verbatim, because I felt that what was being said was that important, but in most places I simply paraphrased. The show can be listened to or downloaded from this site:
http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=51243

The program begins with an interview with Dr Wakefield, in which he is given the chance to discuss his 1998 paper that was published in the Lancet in which he describes a new form of bowel disease (Lymphoid Nodular Hyperplasia) found in children with autism. This paper has been the eye of a tremendous storm of controversy, including the retraction of the paper by The Lancet as well as a hearing by the General Medical Counsel in Britain which Dr Wakefield was stripped of his medical license. At about 7 minutes into the interview, Teri asks Dr Wakefield to explain what the paper did and did not say. Here is his response:

“what it did was to take the clinical history, and findings in 12 children, whose parents came to us for clinical care- NOT for the purposes of litigation, but because their children were sick- they were symptomatic, in particular they had autistic regression and gastrointestinal symptoms that had not been investigated properly. When they were investigated properly, they were found to have a novel inflammatory bowel disease. A subtle, but nonetheless definite inflammatory bowel disease that responded to treatment. That was reported in the case series. This was not a hypothesis-testing study, it merely was a description of the clinical condition. It wasn’t even in that respect a scientific study. It was just a clinical case report.

The other thing it did was to faithfully reproduce the story given to us by the parents about what they believed precipitated their child’s problem. Now, had their child’s problem been precipitated by, um, natural chicken pox for example, had the child regressed into autism within a short space of time after chicken pox, then we wouldn’t be having this conversation Teri. But because it was a vaccine, it was absolutely unacceptable. Now we were asked at the time whether it was wise to put in the vaccine story. If we hadn’t have done, that would have been dishonest. That would have been a misrepresentation because we would be censoring the parents’ story for some political expedient and we weren’t about to do that. So, that was what was said, what was not said was that MMR vaccine causes autism. In fact, what we said was that this study does not prove an association- let alone a casual association- between the vaccine and the disorder, but it did call for further research. It was “that” that ignited the spark.”

Later in the program, he is given the chance to respond to the allegations made against him by Brian Deer in a recent article in the British Medical Journal. This is a detailed section, so I was not able to transcribe it, instead I'll provide a few highlights. One allegation is that the clinical histories in the children’s records, as recorded by their GPs, don’t match those in the study so therefore Dr Wakefield must have falsified the records in the study. Deer says that in child #1, there are signs of autism in the child’s records BEFORE he received the MMR. What he is referring to is that there are notes that the child had a hearing problem. What Deer fails to mention is that the notes also say that the child had discharge coming out of his ear at the time, so this was likely an ear infection. (As an aside here, this wasn't mentioned in the interview, but Deer never had legal access to the medical records of these children). Another allegation made against him by Deer is that Dr Wakefield himself had a vaccine patent on a competing form of MMR, so this was all an elaborate trick to ruin his competition. What he actually has a patent on is not a vaccine at all, but Transfer Factor, an OTC nutritional supplement, that in no way competes with the MMR vaccine.

The second person interviewed is Dr Vicki Debold, who has worked in the health care field for more than 30 years, as a nurse, administrator and health policy analyst, primarily focusing on pediatrics and patient safety. Currently she is a research scientist and affiliate faculty member at George Mason University in the Health Administration and Policy Department where she teaches health services research methods. Since 2008, Dr Debold has served as the consumer voting member of the FDA’s Vaccine and Related Biological Products Advisory Committee. Additionally, she has worked for the Vaccine Safety Working Group, Epidemiology and Implementation Subcommittee of the National Vaccine Advisory Committee. She also serves as the consumer representative to the Independent H1N1 Vaccine Safety Risk Assessment Working Group, and has been a consultant to the CDC Board of Scientific Counselors.

Teri focuses with her on the bigger picture of vaccine safety, and asks “is neurodevelopmental injury associated with vaccine components isolated?” (meaning is it an issue for vaccines other than the MMR). Dr Debold answers that no, neurodevelopmental and immune adverse reactions are not new and not limited to just one vaccine. Encephalitic outcomes (which can vary from temporary to deadly) have been seen in studies even early on, especially those involving Pertussis. Regression- loss of social, emotional, physical skills following vaccination has been documented for decades. These concerns have been around for a long time before there was any concern about a possible link between MMR and regression.

In 1999, the IOM (Institute of Medicine) published a report that said that there was a relationship between DPT and encephalopathy. If you look at the Vaccine Injury Compensation Program’s Table of Compensable Injuries it lists encephalopathy is a compensable injury for both pertussis- containing vaccines and MMR. There have been questions relating to other neurological problems that the IOM has tried to review over the past 15 or so years, but there simply wasn’t enough scientific evidence to determine whether or not a relationship exists. It sounds like she is saying that this has been true for half of the questions that the IOM has reviewed in regards to concerns about vaccine safety. She says “There is, you know, a very large gap in science about what we know and what we don’t know as it relates to adverse events following vaccination”.

When asked if there have be times in the past when physicians or researchers have been ridiculed and discredited for having unpopular and unorthodox views of medicine, Dr Debold answers that this has been a longstanding pattern in the history of medicine. As an example she points to Ingot Semmelweis, who was berated and fired for believing that incidence of childbed fever could be reduced if maternity doctors would wash their hands between examining patients and after doing autopsies. Examples of practices that were once believed to be safe, but later shown to be unsafe, include the use of various drugs during pregnancy such as thalidomide, radiation of tonsils that led to thyroid cancer, etc. What’s happening with Dr W now is nothing new- whoever first raised concerns about the safety of common health treatments, even when it turned out to be true, was vilified the same way.

This is followed by an interesting discussion about why this issue is coming up now. The public is more informed about medicine and that some medical interventions cause harm and death, they are taking more responsibility for their own health, they have increased access to medical research and information, and are asking more questions. There are biases in health research that the public is more aware of, including the fact that a lot of research is funded by pharmaceutical companies, those companies have influence over what gets published so that studies that support their products are more likely to be published, and negative studies can be “spun” to alter the conclusions.

Dr Debold goes on to discuss problems related to vaccine science and infrastructure. Pre-licensure studies for vaccines tend to be very small, they use only healthy children, and they are increasingly using an “active placebo” which means that the experimental group is not compared to a control group that receives an inert placebo, rather the control group receives either other vaccines or the other ingredients in vaccine, such as the adjuvant, without the actual antigen. These studies test for vaccine effectiveness- whether the test group develops the antibodies- but not for safety.

Post-licensure there are two systems to look at safety, VAERS (which is passive) and an active system that’s called VSD, which is closed to outside researchers. The VSD is too small to pick up unusual events and still doesn’t have unvaxed control groups. The VSD system is studied by researchers on contract with the CDC and since it is closed, findings cannot be independently replicated. The public is becoming increasingly aware that there are problems here and is less trusting of the system. She says that polls show that 90% of parents are saying that vaccine and medicine safety is there #1 concern, but doesn’t say number one concern amongst which options?

The next person interviewed is J.B.Handley of Generation Rescue. Amongst other things, he discusses the validity of the 14 studies that are used by the CDC to claim that vaccines are safe. The highlights of his section are the mention of Poul Thorsen, one of the lead researchers on the4 Danish studies, who embezzled millions of dollars. This has not been covered by the mainstream media, which is ironic as they have made such a big deal of the alleged ethical concerns regarding Dr Wakefield. Additionally, Mr Handly points out that the organization in Denmark that controls the vaccination data is also the organization that produces all of their vaccines so there is a conflict of interest. He also points out that it’s absurd to suggest that Dr W’s paper is the source of worldwide panic as the media has been doing. The media seems to be saying that all of the worry over vaccines was caused by him, and he’s a fraud, so none of the worry is true. There is no evidence to support this view.

Lastly, we hear from Wendy Fournier, of the National Autism Association, who points out that not only have the original findings of the 1998 Lancet paper not been challenged (the existence of Lymphoid Nodular Hyperplasia), but they have been independently replicated a number of times. The original study was reporting on a link between bowel disease and autism. This association has been shown to exist over and over again. Even the AAP has put out a consensus report noting this association. Additionally, Ms. Fournier is asked to talk about the evidence of a causal link between vaccines and autism based on the settlements in Vaccine Court. She says, of the 1322 cases of neurological injury that were settled outside of vaccine court and are therefore “off the record”, that according to a source at the United States Health Resources and Services Administration “we have compensated cases in which children have exhibited an encephalopathy or general brain disease, encephalopathy may be accompanied by medical progression of an array of symptoms including autistic behavior, autism, or seizures.”

Fermented Foods

2011-01-16T01:00:00.000-08:00

When we first began the GAPS diet we were still needing to eat low histamine, so we were not able to eat the fermented foods that it suggested. However, as we healed, we not only lost our sensitivity to ferments but they became an important part of our further healing. We began to focus on increasing the amount of fermented foods in our diet, both as a source of probiotics and as a source of vitamins that the healthy gut flora would normally make for us inside our bodies. We have found that they have helped us tremendously and that we really enjoy them. They are generally easy to make and much less expensive than buying probiotics, although we do still do that as well.

Here are some resources:

This post from the blog Girl in an Apron gives some information about making milk kefir, including a list of the microflora it contains, which is great to know. When I make kefir I personally skip the part where she warms the milk in a water bath.

This page from Organic and Thrifty gives some great ideas for introducing fermented foods to kids who may not be excited about eating them. Here are some more ideas for using kefir.

Dom's kefir site has pretty much all of the information you may want about kefir, including its history and how to make all sorts of cheeses with it.

The Nourished Kitchen blog has a nice post about the variety of cultured dairy options out there. Some of these I had not heard of before and am eager to try. The site Cultures for Health has resources to help with making a many of these options (including how to make non-dairy yogurt).

If you're avoiding dairy, you can make water kefir, which is essentially a natural soda. That link has videos to help you get started. Another delicious fermented drink is Kombucha, which is a fermented tea drink. Beet Kvaas is another option for a non-dairy fermented drink. The flavor is very strong though, and is more of an acquired taste. Unfortunately I had to give up both kombucha and beet kvaas because both are very high in oxalate.

This site has instructions for converting milk kefir grains to water kefir grains.

Lacto-fermented (pickled) vegetables are delicious too, often easy to make, and can be made in a tremendous variety depending on taste. This article from the Weston A. Price Foundation gives some background information and general ideas about using lacto-fermentation with vegetables and fruits. Here are instructions for making lacto-fermented turnips and beets. There are many, many recipes for fermented vegetables. i will add more as I find them. In the meantime, these two books are great resources:

Nourishing Traditions by Sally Falon

Wild Fermentation by Sandor Katz

Could Autism be related to an Autoimune reaction to Mitochondria?

2010-12-30T20:13:00.000-08:00

Various researchers have been reporting findings of autoimmune activity in people with autism for some time (the details of that will be another post). Today I came across the newest study to report such findings and was so intrigued that I had to post about it right away. The study is called "Mitochondrial DNA and Anti-mitochondrial Antibodies in Serum of Autistic Children" and was published in the Journal of Neuroinflammation. (It's significant to note that none of the test subjected showed any sign of mitochondrial dysfunction.)

This quote from the abstract sums up the findings of the study:

We recently showed that the peptide neurotensin (NT) is increased in autistic children. We now show that NT induces release of extracellular mitochondrial DNA (mtDNA) that could act as "autoimmune" trigger. We further show that serum from young autistic patients contains mtDNA (n = 20; cytochrome B, p = 0.0002 and 7S, p = 0.006), and anti-mitochondrial antibody Type 2 (n = 14; p = 0.001) as compared to normally developing, unrelated controls (n = 12). Extracellular blood mtDNA and other components may characterize an autistic endophenotype and may contribute to its pathogenesis by activating autoimmune responses.

Here are two more quotes that discuss the possible implications of these findings:

The presence of extacellular mtDNA in children with autism suggests that it may be one source of "autoimmune" triggers, and may potentially explain some aspects of immune dysregulation reported in autistic patients. For instance, mtDNA (or other extracellular mitochondrial components not measured in this study) could activate TLRs on immune or glial cells to release pro-inflammatory cytokines, such as IL-6, IL-8 or TNF, high gene expression of which was reported in brains of autistic children.

And..

One possibility is that mt (mitochondrial) components are secreted from immune cells, as was recently reported for activated neutrophils.^[22] Another possibility could be activated tissue mast cells in the gut, where NT [23]is abundant and may induce mucosal permeability.^[24] Our current findings showing that NT can trigger mtDNA release from human mast cells is supported by our previous report that NT, found both in the brain and the gut was elevated in autistic children.

This last quote hints at several interesting possible connections. The authors of the study have already reported that they found elevated levels of a peptide called neurotensin (NT) in children with autism, and here they are saying that NT is found in higher elevations in the gut and brain and may cause gut permeability which is known to be common in autism and itself leads to a cascade of problems as substances are able to leak from the gut into the bloodstream which aren't supposed to be there. Also, it has been noted that when there is gut permeability there is more likely to be permeability of the blood brain barrier. If elevated NT levels also cause permeability of the blood brain barrier that would also lead to a cascade of events that we see in autism such as mercury and pathogens in the brain.

Oxalate Levels of Foods

2010-12-29T22:02:00.000-08:00

I discovered about 3 years ago that Roo was reacting badly to the very highest oxalate foods, such as almonds, and took those out at that time. I revisited the issue about 6 months ago because Roo was having problems with urine leaking at night, and was stunned to discover that not only did he need to be on a low oxalate diet but that I also need it very much. This may be my primary food sensitivity. Oxalates can cause the pain and exhaustion of ME/CFS (or at least contribute to them significantly), at least in part because oxalates injure and kill the mitochondria. They also keep good bacteria from being able to colonize the gut if the level of oxalate in the gut is too high. Oxalates can also cause the release of histamine and so can cause all of the same symptoms that histamine can. Vitamin B6 inhibits the formation in the body of oxalate so a deficiency of this vitamin may predispose a person to have an oxalate problem, so there may be a correlation between Pyrroluria and having high oxalate levels.

For the past 6 months I have been struggling to follow the low oxalate diet using a variety of lists available online as guides, but the lists often don't agree with each other and this has been very frustrating for me. I finally created the list below by compiling information from the lists that are in the files section of the Trying_Low_Oxalates yahoo list, which has the most up-to-date lists. One reason why lists don't agree is that newer testing is using more reliable methods, so I gave preference to newer data when I had to make a choice. I can't guarantee that this information is correct, it's just the best I could come up with. I will update it as I get more information.

The foods with the very highest levels, that need to come out immediately when an oxalate problem is suspected (and should never be consumed by a person with a known oxalate processing problem), are:

almonds, amaranth, black beans, brazil nuts, beets (root and greens), buckwheat, cashew nuts, cannellini beans, chocolate, corn meal, cooked tomatoes, great northern beans, marshmallow root, milk thistle, navy beans, oil of oregano, peanuts, pecans, pine nuts, pink beans, pinto beans, potato chips, potato flour, rice bran, rhubarb, sesame seeds and tahini, slippery elm bark, all soy, spinach, star fruit, sweet potatoes, teff (flour and whole grain), quinoa (whole grain), white bean flour, and yucca powder.

All meat and animal products are low (eggs, milk, butter)

Vegetables-

LOW- alfalfa sprouts, avocado, arugula, asparagus (boiled), banana pepper, fresh basil, bok choy, broccoli (boiled), broccoli raab, cabbage (all kinds), cauliflower, chives, cucumber, daikon radish, garlic, kale (1/2 cup, boiled at least 6 min), kohlrabi, all lettuce, mung bean sprouts, mushrooms, mustard greens (boiled), onions, green peas (boiled), raw tomato, snow peas, sweet bell peppers (red, orange, yellow but NOT green), radishes, shallots, yellow summer squash, all winter squash (acorn, butternut, pumpkin, etc), turnip (steamed or boiled), wakame, water chestnut, watercress, zucchini, rutabaga (1/2 cup, boiled 1 hour)

MEDIUM- artichoke (boiled), asparagus (steamed), Belgian endive, broccoli (steamed), Brussels sprouts, carrots (1/2 cup boiled), celeriac, collard greens (boiled), eggplant (high histamine!), fennel, grape leaves (one), green onion, jicama (peeled), kale (steamed 6 min), nori, olives, (5), red onion, green beans (vary- roma and runner are med cut and boiled, string are high?), snow peas

HIGH- Anaheim peppers, green bell pepper, brocollini (steamed), carrots (raw or steamed), celery, chard, chicory, hearts of palm, parsnip, potatoes (red without skins and boiled are lowest), tomatillo (one is medium), many green beans (pole, French fillet), leeks, nopali cactus, okra, parsley, sugar snap peas, purslane, radicchio, sorrel, sweet potato, green tomatoes, canned tomatoes, yams (in US yams are sweet potatoes)

Fruit-

LOW- apples, apricot (one), billberry (can get as jam), cantaloupe, sweet cherries, cranberries, dates, fresh fig, green grapes, huckleberries, lemon, lychee, mango, melon, oranges, passion fruit, peaches, yellow plum (most plums are low, some are medium), golden raisins, strawberry (less than 10), watermellon

MEDIUM- banana (half is low), Bosc pear, grapefruit (white), lime, papaya (1/4 cup), pears, pineapple (is high histamine), pomegranate, blueberries (1/2 cup), dried cranberries, dried cherries (1/3 cup), Italian prunes, tangerines, mandarins, nectarines, persimmon

HIGH- Anjou pears, dried apricots, blackberries, clementines, elderberries, grapefruit (pink), Hachiya persimmons, pomegranate, raspberries, gooseberries, goji berries, kiwi, citrus zest, currants, concord grapes, dried figs, guava

LOW FRUIT (and other) JUICES- apple, apricot, blackcurrant, cranberry, cherry, white grape, grapefruit, lemon , lime, noni, orange, pineapple, red currant juice, aloe vera juice (great for soothing, healing GI tract)

MEDIUM JUICE- carrot, coconut water, red grape, plum, pomegranate

HIGH- Kern’s apricot nectar

Seeds, Nuts Beans, and Grains

LOW- chestnuts (canned or roasted), coconut (milk is medium), flax seed, pumpkin seed (1/4 cup), 1 T pumpkin or sunflower seed butter, macadamia nuts (5 or fewer), red lentils (boiled 30 min), white rice, wild rice, black-eyed peas, split peas (both green and yellow), cellophane noodles (GF), Ancient Harvest quinoa spaghetti (1/2 cup)

MEDIUM- coconut milk, sunflower seed (1/4 cup), macadamia nuts (up to 25 nuts), pistachio (up to 25 nuts), pumpkin seeds (1/2 cup), walnuts (1/4 cup), popcorn (Orville Redenbocker’s is high), psyllium husks (1/2 cup), red kidney beans (1/2 cup), Tinkyada brown rice pasta, brown rice (1/2 cup), brown jasmine rice (1/2 cup), garbanzo beans (1/2 cup), lima beans, rice spring roll skins, millet (1/2 cup, boiled 30 min)

HIGH- Arrowhead Mills brown basmati rice, adzuki beans, black beluga lentils, fava beans, hazelnuts, hemp milk, green lentils, navy beans, poppy seeds, quinoa, red beans, rice milk, white beans, GF oats

Flours and Baking-

LOW- agave nectar, almond extract (pretty much all flavoring extracts), white chocolate, carob, coconut flour, guar gum, tapioca starch, baking soda, cornstarch, unflavored gelatin, rice starch, xylitol, stevia liquid (powder is high)

MEDIUM- flax seed meal, potato starch (1/2 cup), sweet rice (mochi) flour (1/2 cup), green pea flour, chick pea (garbanzo) flour, pumpkin seed flour (1/2 cup), wild rice flour (1/2 cup)

HIGH- arrowroot, brown rice flour, chestnut flour, Chatfield’s carob powder, carob chips, fava bean flour, millet flour, sorghum flour, stevia powder, white rice flour (especially Bob’s Red Mill stone ground)

Flavors, Spices, Other

LOW- vanilla, coconut oil (be careful- it kills bacteria, fungi, viruses and can cause die-off), olive oil, sesame oil (including toasted, great flavor), mace, maple syrup, mayonnaise, mustard, vinegar (high histamine), capers, chives, cilantro, ginger root, bay leaves, prepared horseradish, saffron, green herbs (dill, basil, oregano, rosemary, sage, thyme, tarragon, etc), white pepper (black pepper is high), nutmeg (up to 3 tsp), sweet paprika, parsley (dried, 1 tsp), Torani chocolate syrup, peanut oil, tabasco sauce (up to 2 T)

MEDIUM- cardamom (1 tsp), cayenne (1 tsp), cinnamon (1/2 tsp), chili powder (1 tsp)

HIGH- allspice, anise, black pepper, celery seed, clove (ground), coriander seed, cumin, curry powder, fennel seed, turmeric

Tea, Beverages-

LOW- chamomile, fennel, hibiscus (?), licorice, mint/peppermint, Kukicha twig tea, nettle, Ojibwa tea, pau d’arco tea, roibos (?), rose hip tea, senna tea, yerba mate (medium), wine (high histamine), coffee

There is a lot of disagreement about black tea and green tea. It appears that if either is brewed very briefly, they may be medium oxalate, but if they are brewed longer they are high. This seems to vary quite a bit by brand of tea as well so I chose not to include either kind of tea here.

The Parents of Elias Tembenis Win Their Case in Federal Vaccine Court

2010-12-22T18:12:00.000-08:00

Harry and Gina Tembenis originally filed in Federal Vaccine Court for compensation for their son Elias' autism and seizure disorder, which was caused by his DTaP vaccine, as part of the Omnibus Autism Proceedings. When Elias died from a seizure they withdrew the case from the Omnibus proceedings and changed the claim. It was just announced that they won this claim- that the DTaP was responsible for his death. I hope this gives them some closure, and it does provide some validation, but it is hard to see something resulting from a child's death as a victory. Let's just hope that this ruling brings us a little closer to a time when vaccine injury is taken seriously and steps are taken to keep this from happening again.

It is ironic that the Federal Vaccine Injury Compensation Program was originally created by congress because the DPT vaccine caused so many deaths and serious injuries back in the 1980s. The program was established to address the financial implications of such a high degree of vaccine injury, but it seems clear that the way it was set up- which protects vaccine manufacturers from liability- has effectively removed the incentive to create the most safe product.

Sheryl Attkisson of CBS, who has consistently provided some of the best journalism about both autism and vaccines in the mainstream media, wrote a nice little piece about the implications of this case here.

To read the full claim, go here.

To read more about the Tembenis family and Elias' story, go here.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS

2010-12-19T20:21:00.000-08:00

ME/CFS is a neuroimmune disease that I have. It seems to be fairly common in moms of kids on the spectrum, so I am including information on this blog about it because I feel that my illness is intricately interconnected with Roo's disorder, and that what has been working to heal him is what offers me the most hope for recovering. Not many people have heard of M.E. (which stands for Myalgic Encephalomyelitis), and many of us with this illness hate to use the name CFS (Chronic Fatigue Syndrome) because we feel that that name trivializes an illness that can be devastating and even fatal. Because of this, people are always asking me what ME/CFS is, so here I will try to answer that.

This video was put together by a woman named Laurel who is currently bedridden with ME/CFS. She writes a blog called Dreams At Stake: A Journey of Hope Through Severe ME/CFS, which is very informative about this illness. If you click on the tab "my story" you will read about the onset of her illness and how it affects her. Along the right side of her blog is a long list of good ME/CFS blogs.

This disease has gone by many names. Someone prominent in the field has pointed out that the less well understood an illness is, the more names it will tend to have, so this is fitting. The CDC and mainstream medicine have shown essentially no interest in figuring out what this disease is and what can be done about it, choosing instead to stigmatize and minimalize it. It has been considered by the CDC up until now to be a psychiatric disorder caused by "inappropriate illness beliefs". Other names that this illness is known by here in the US include: Post Viral Syndrome, Chronic Mononucleosis, Post Viral Fatigue Syndrome, Yuppie Flu, Atypical Poliomyelitis, Encephalomyelitis, Epidemic Neuromyasthenia, Chronic Fatigue Syndrome, Chronic Fatigue Immune Deficiency Syndrome, Iceland Disease, and even HIV-negative AIDS. Taken as a whole, this collection of names is telling- it suggests a viral connection (interestingly similar to polio), we see that the illness has often been associated with cluster outbreaks (and many of these clusters have been given their own name, such as Iceland Disease and Royal Free Disease), and that significant symptoms involve fatigue, pain, immune dysfunction and neurological symptoms. The most recently proposed name is XAND which stands for X-Associated Neuroimmune Disease to reflect the new findings that ME/CFS may ultimately be caused by a retrovirus.

The primary reason that the name matters (aside from influencing how the disease is perceived by others) is because several of them are associated with slightly different diagnostic criteria. Diagnosis of Chronic Fatigue Syndrome tends to center around the primary criterion of severe exhaustion that persists for at least 6 months and that is not relieved by rest or sleep. It is recognized that other symptoms tend to be present as well, such as pain and the other symptoms listed for M.E, but they seem to receive less emphasis and so this diagnosis is often perceived as trivializing the illness.

The common symptoms of ME/CFS include (in varying combinations and degrees in each person):
-low blood pressure
-chronic sore throat and/or swollen and tender lymph nodes
-lightheadedness or dizzyness when standing up. (When this is severe it is called Orthostatic Intolerance and has to do with an inability to appropriately control blood pressure.)
-cardiac symptoms, such as racing heartbeat, irregular heartbeat, strange sensations or pain in the chest.
-weepiness, depression, anxiety.
-difficulty with word retrieval and/or difficulty in processing what others say. This can come and go. Sometimes the auditory processing part is experienced as it taking a lot of energy to pay attention to someone who is talking.
-memory disturbances, especially short-term (like wondering why you walked into a room, or losing your train of thought).
-Irritable Bowel Syndrome is very common in people with ME/CFS.
-Post Exertional Malaise- this is a "make or break" symptom for diagnosis, and means that the person "crashes" after exercise or other exertion. The "crash" can be up to 72 hours later, and the person may feel pretty good at first before the crash.

Crashing usually means serious worsening of exhaustion and pain, but can also include other things like heartbeat changes and flare-ups of digestive problems. Exertion can mean things like leaving the house for an outing, even having a conversation- not just a "workout". People with ME/CFS often can't do more than one thing in a day, or can't plan things for two days in a row. They tend to feel that they need "recovery time" after doing things like going to the store, socializing, even standing for a period of time. It varies a lot from person to person and in some people it seems to come and go while in others it is very consistent. Some people are completely debilitated while others are able to maintain a higher level of functioning.

To read more about the diagnostic criteria of ME/CFS, go here.

To read more about the stigma of CFS and why many of us are hesitant to use that name for our illness, go here.

A basic description of the fundamentals of ME/CFS.

FAQ about ME/CFS from the Whittemore Peterson Institute for Neuro-Immune Diseases

Introduction to the Biomedical Approach to Healing

2010-12-18T22:54:00.001-08:00

Taking a biomedical approach to understanding health challenges and healing those challenges has worked for many people. Undertaking this approach takes making some paradigm shifts and really rethinking how we view the body, health, disease, food and nutrition on a very basic level. In conventional western medicine the body is seen as a machine made of separate and isolated parts, and those parts are viewed as belonging to one or more major system such as cardiovascular, respiratory, digestive, etc. The aspects of the body that we can see, such as organs and these larger systems, are emphasized while aspects that are too small to see- such as cellular mechanisms- are de-emphasized. The parts of the systems are seen as "fine" until they "break", at which point they need to be "fixed" or replaced. The parts of each system are viewed as passively fulfilling their role, as the parts of a machine would, rather than being active. While the analogy of the body as machine can be very instructive and helpful we must remember that it is only an analogy and that the body itself is an organic entity that operates very differently than a machine.

So, how does the biomedical approach differ? Essentially the body is understood as a complex organic system that functions primarily in the realm of biological and biochemical interactions rather than mechanistic ones. The body is seen as an exceedingly complex conglomerate of cells which interact and communicate with each other regardless of their physical proximity. The cells and the various structures in which they work together are active and involved in localized responses. These biological systems are highly inter-related rather than isolated from each other. The function of these systems is influenced by many factors and can be compromised to varying degrees, so they exist in relative states of health rather than absolute ones. What this means in terms of autism, or any other disease or disorder, is that the observable symptoms are not the problem in itself but rather are signs that something is going on inside the body on a biological level- they are clues. Rather than trying to eliminate them, we can try to use them to understand what has gone wrong inside the body and what can be done to restore the involved systems to a better level of functioning. These clues can also be used to manage symptoms (in cases where either the underlying cause has not been identified or will take a long time to address) in ways that support the body in it's functioning.

Here are some resources to help illustrate how this approach to addressing autism (and related issues) works:

This page from the Autism Research Institute lists symptoms that indicate that your child is likely to respond to biomedical treatment. Another page on the same site called Clinician Perspective: Treating Medical Symptoms explains some of the ways in which autism, traditionally considered a psychiatric illness, actually has a medical component. Other helpful pages from ARI:

Summary of Biomedical Treatments
Parent Ratings of Behavioral Effects of Biomedical Interventions for Autism
Parent Ratings of Behavioral Effects of Biomedical Interventions for Asperger's Syndrome
Selecting a Clinician Using a Biomedical Approach

An interview with Dr Kenneth Bock, MD, author of "Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders" in which he discusses the basics of what biomed is and what it has to offer families affected by autism.

This article entitled "The Treatment of Autism" gives a brief overview of some of the basic steps in the biomedical approach, including removing allergens and other problematic substances in food, supporting detoxification systems, treating chronic infections and immune deficits that allow them to flourish, and healing from the toxic effects of mercury and other metals. This article makes the point that the underlying issues that need to be treated in autism are the same ones that underlay so many illnesses that are common today

The site Published Scientific Data Concerning Autism has a wealth of information regarding most of the considerations involved in treating autism biomedically. There is a very good graphic on the home page that shows how these various considerations are related with each other, including immunological problems, mitochondrial damage, the use of special diets, and therapies such as hyperbaric oxygen treatment). This site gives introductory explanations of each of these considerations as well as in depth information and lists of published research.

This is a listing of pages on the site Dana's View that contain all sorts of biomedical information.

This page from the TACA website (Talk About Curing Autism) called Autism- The Biomedical Basics gives an overview of many of the specific biomedical interventions involved in addressing the various factors involved in autism. The group TACA is a wonderful support group for families addressing autism with the biomedical approach. If you do not live in an area where there are in-person meetings, the website has a lot of really good info.

Financial Help for Therapy

2010-12-18T22:54:00.000-08:00

Lend4Health coordinatess interest-free micro loans from individuals in the community. Loan terms are worked out on a case-by-case basis. Families seeking loans write a brief explanation of how much money theya re seeking and what it will be used for.

Talk About Curing Autism (TACA) has a Family Scholarship program for members. Membership is free.

Generation Rescue has a grant program called The Rescue Family Grant Program, which is available to families who are new to biomedical intervention (previous experience with GF/CF diet is okay). It includes doctors visits, dietary intervention training, and money for supplements to get a family started.

ACT Today- Autism Care and Treatment
provides grants to families in need to cover treatment for ASDs. They are currently trying to raise funds to hep military families in particular who have limited access to services.

The National Autism Association has a program called Helping Hand which provides financial assistance in the form of grants to families in desperate need of funds to pay for autism treatment (includes things such as therapy, supplements, and biomedical treatments).

Aid for Autistic Children Foundation provides debt relief and financial planning services for families so that they can focus on the needs of a family member with autism.

Insurance Help

Insurance Reference for Military Families (from the ARI website)

Insurance Help for Autism (for California residents)

(for Oregon residents)

Help with getting insurance coverage from the TACA site

Current State of Insurance Legislation in Various States

The Somali Autism Mystery

2010-12-08T18:13:00.000-08:00

People in the autism community have been aware for some time now that the prevalence of autism in the population of Somali immigrants in Minnesota is extremely high. At first this was purely anecdotal, but as attention has been drawn to this situation and the numbers have been looked at the rate appears to be 1 in 28 children. This translates to about 360 children per 10,000 which is about 5 times the national average, and at least twice as high as the average rate in Minnesota, a state with an already extremely high rate of autism (about 1 in 56).

In many contexts a discrepancy this large would be considered A CLUE...but in the political world of autism the response by authorities has been to try to dismiss or minimize the importance of this. Why? Of course there are many reasons for this- anything indicating that autism has a biological, environmental component is being treated similarly. The details of this situation indicate that vaccination, vitamin D level, and mitochondrial function may be major factors at play. This is also not just a single anomaly- similarly high rates have bee found in other East African immigrant communities in northern lands, including Sweden, Montreal, and Ireland.

Why is is this so interesting and important? For one thing, these families needs help and support. This has significance on a larger scale though, as David Kirby put it so well in a piece he wrote on the subject:

"If it can be demonstrated that US-born children of Somali refugees are more prone to autism than the other kids of Minneapolis - or Somalia - then it shouldn't take too long to discover what it is about them (their genes) that clashed so terribly with the way they were conceived and raised (their environment).
It won't explain every case of autism, of course, but it might open new doors of understanding and knowledge that can be applied to combating autism worldwide."

This is a quote from one of the fathers (from the above article), regarding whether autism exists in Somalia but just "wasn't noticed"-

"And these symptoms? I had never seen anything like it before. We have names for mental retardation or Down syndrome. But the mannerisms, the loss of speech, the tantrums and violence and running out of the house that comes with autism - I think we would have noticed those things. But we've never seen them before in Somalia or Kenya."

Here are several other interesting quotes from the article:

"Some doctors and researchers in Minneapolis that I spoke with were extraordinarily sympathetic toward the Somalis. "Vaccines have to be playing a role," said one very prominent pediatrician and researcher, who is working quietly behind the scenes to change attitudes at the University of Minnesota and elsewhere, and did not want to be named. "Maybe if we start talking about the individual toxins in vaccines, and not the vaccine program as a whole, others in the medical profession will find it easier to come around," the doctor said."

This is another quote, quite long, which elaborates what is probably another major piece in this puzzle- vitamin D levels:

"Dr. Gregory A. Plotnikoff, medical director for the Institute for Health and Healing at Abbott Northwestern Hospital, said a colleague had noticed an "exceedingly high" rate of morning sickness among pregnant Somali women in Minneapolis, often requiring hospitalizations.

The doctor began checking Vitamin D levels and found that, on average, they were far below what is considered to be normal and healthy.

Somalis, he said, may start out with naturally low abilities to produce vitamin D from sunlight, (as is the case with many people with Middle Eastern blood in them). That is compounded by the fact that dark-skinned people require far more sunlight to produce vitamin D than light-skinned people and, when Somalis move to areas of higher latitude, with far less sunlight - their vitamin D stores may be virtually depleted, at least for part of the year.

"Vitamin D is crucial for normal brain development, because there are receptors for it throughout the brain," Plotnikoff said. "Vitamin D also plays a role as an anti-inflammatory agent and, besides cutting down on inflammation, it increases concentrations of glutathione, which better supports the brain's capacity to handle heavy metals and oxidative stress."

As an aside, that is very interesting to me as I had severe morning sickness during both my pregnancy with Roo and with his older brother. My vitamin D levels have been tested several times and are not only very low but are not rising much even with high oral supplementation. I have also heard that severe morning sickness can be a sign of significant vitamin B6 deficiency, something which both kids and myself are deficient in, and respond well to supplementation of. Another interesting connection for my family? We have responded very well to mitochondrial support, and one of the doctors interviewed for the piece by David Kirby had this to say about vitamin D and mitochondrial functioning:

"Finally, vitamin D deficiency in pregnant animals can lead to "dramatic" defects in mitochondrial function in offspring, according to at least one study. The role of mitochondrial dysfunction and autistic regression is only now beginning to be explored. But some researchers believe that poor mitochondrial health (perhaps exacerbated by vitamin D deficiency?) is a precursor to autistic regression in at least one subgroup of children."

Some Random Musical Pieces

2010-12-08T16:47:00.000-08:00

Roo loves music. It's common for people on the spectrum to have musical talent, but this seems to be especially true for people with Hyperlexia, and Roo is no exception. What is extraordinary for Roo is that when he was younger his sound sensitivity was so extreme that music was painful for him so for years we had no music in our house. His sensitivity even extended to people singing, which is part of the reason why he didn't attend any sort of classroom or preschool environment when younger. The fact that his sound sensitivity is mostly healed and that he can now enjoy music is one thing we are very thankful for and has been one of the wonderful things about Roo's healing. It's also further evidence that his ASD traits aren't "who he is"- they aren't by choice- they are limits that have bee imposed upon him, and when they are removed he can spread his wings and enjoy the freedom.

So, here are several musical pieces that have caught Roo's and my attention for various reasons. This first video is of a young man with autism named Martin who has a wonderful talent for sining, but is otherwise essentially non-verbal.

This next video is a performance of "Sunday, Bloody Sunday" by a recovered child at the 2009 AutismOne conference. While Roo loves to watch other people who have autism (or did have autism), I also find the lyrics to be particularly appropriate for a conference about autism recovery. I have found that the lyrics of so many songs have taken on new meaning to me and I know I'm not alone in this.

This last piece is the song "Giant Steps" by John Coltrane. Roo has a picture book that presents this song in a graphic way to illustrate some of the musical ideas of Jazz. We decided to look for the song on YouTube so that he could hear it (he loves looking things up on YouTube and because of his Hyperlexia has been able to do this independently for a while). He was enchanted with this version where the music appears to be written as the music is played. I'm not entirely sure that written music has the same appeal to him as the written word, although I have always wondered if it would, but he was so entranced by this video that I had to include it here.

Voices from the Spectrum

2010-10-02T00:41:00.000-07:00

There are so many reasons to want to hear about the experience of being on the autism spectrum form those who live it. There are some people in the Neurodiversity movement who claim to speak for everyone on the spectrum, but what I've found is that in reality there are as many ways of thinking about being on the spectrum as there are people who can express them. There is also arguing about which person best represents the spectrum, or how one person should be able to include a variety of viewpoints in what they say. I think the solution is to get as many voices out there as we can, to let each person speak for him or herself and learn from the variety. So, to that end, here is a gathering of the voices that I have found:

Meet Taylor Morris
This is a blog by a girl in high school who has Asperger's about herself, how her mind works, what helps her, and generally her thoughts about autism. She has video blog posts, writing, and her and her mother share a lot about her story and what has helped her.

Autism's Gadfly
This is a blog done by an older man with high functioning autism. He shares his take on autism and how it has affected him, as well as his thoughts on current goings-on in the autism world.

This website by and about Donna Williams gives a lot of insight into how she thinks and experiences the world. The page lists the books that she's published, including her autobiography, which gives more detail about her extremely unusual life.

This is a letter written by Sondra Williams, a woman who has autism herself and is also the mother of 4 children on the autism spectrum, to the autism blog Age of Autism regarding the case of Sky Walker. (For background reference, Sky Walker is a boy with low functioning autism who killed his mother during a rage. His story is such a tragedy and highlights so many things wrong with the world of autism services).

There are two people who I've come across who were both considered very low functioning until they learned to spell/write their thoughts, both in the preteen or early teen years. Before this time they were essentially unable to communicate and no one knew that they understood what was being said to them and going on around them. Sue Rubin wrote and created a movie about herself and her life called "Autism is a World". When Sue was a child she was considered to be profoundly mentally retarded with an assessed IQ in the mid 30s. Later, after she was able to communicate, her IQ jumped about 100 points into the 130s. At the time of the film she is attending college studying history.

The other person is Carly Fleischmann who began to spell around age 11. Unlike Sue, who was taught, Carly surprised everyone with her ability as no one had thought to teach this to her. Carly has a blog called Carly's Voice, Changing the World of Autism that features her writings, news pieces about her, answers to questions that people have sent her and a way to contact her if you have a question for her. Both of these women are just beyond inspiring, and remind us to be humble about what we think we know about autism, and especially to be wary of the label of "low functioning". You just can't make assumptions about what is going on inside another person's head, especially when they struggle to communicate or can't communicate at all. There's a saying you hear around the autism world that goes like this "presume intelligence".

Autism and ME/CFS- Twins Separated at Birth?

2010-09-29T21:08:00.000-07:00

This post is going to be scattered, just like my brain today. We've had a mild bug for several days now, and any illness for me, no matter how mild, seems to cause the neurological aspects of my chronic illness to flare up. This post about "brain fog" from the site ButYouDon'tLookSick really sums up my day, sort of like a demented game of pinball where I wander from thing to thing while accomplishing nothing, because I can't remember why I wandered in that direction in the first place. This post, which discusses a recently published study regarding the fatigue in Fibromyalgia (the same fatigue that I have), has a great description of this debilitating symptom which the author describes so well:

"I've described the fatigue of FM as feeling like someone has pulled my plug. It's as if my source of power and energy has been cut off. Another analogy might be made to power steering in a car. Have you ever tried to steer a car when the power steering wasn't working? It takes every bit of strength you can muster just to turn the steering wheel a couple of inches. When I am having a flare and the fatigue is at its worst, it takes every bit of energy I can muster just to do the simplest task, like take a shower or make a sandwich."

Not sure if it's coincidence or the fact that I've been sitting in front of the computer more thee last few days as I am too scattered to do much else, but at the same time that I am experiencing a disconcerting increase in my symptoms, I've been reading much more about the illness that I have- ME/CFIDS. For those who don't know, that stands for Myalgic Encephalomyelitis/Chronic Fatigue Immune Deficiency Syndrome. People with the illness tend to hate the term "Chronic Fatigue Syndrome" for many reasons, but mostly because (as one site says) "the tiredness we have is to fatigue what a nuclear bomb is to a match".

Ironically for me, ME/CFIDS is about as political as autism is. The CDC has been nothing but a roadblock in getting the illness researched or taken seriously. It has seemed to me from the beginning that these two groups- the CFS world and the autism world- have so much in common, they are like twins separated at birth that have grown up now knowing of each other, yet who have led parallel lives. I came across this fantastic post on Osler's Web today in which the two worlds have collided, and it seems that the "warrior" mentality of many autism parents may be inspiring a new activism among the CFS world. This post is also a wonderful dressing-down of "quackery exposing" journalism focused on that nemesis of truth in the autism world, Trine Tsouderos of the Chicago Baboon.. I mean.. Tribune.

Why exactly does this matter? Well, for starters, lots and lots of people have been very very sick for a long long time. Many have died. Some of us are less sick, but this still has a major impact on how we can live our lives day in and day out. With the poor quality of journalism mentioned above, and the CDC digging in it's heals and impeding progress, it can be hard to get information necessary to know what to think of this illness or how to get better. Several days ago, I came across a list on one of the big CFS sites of how people diagnosed with ME/CFS have died. This is in direct response to a claim from the CDC that no one dies of CFS. It was sobering. Not only that so many people have died of complications of the disease (usually lymphoma, heart problems, or brain tumors), but also that so many have committed suicide to escape the disease. Mainstream journalists love to say that the "anti-vaccine" movement (read "safe vaccine movement") has blood on it's hands from any person who dies of a supposedly vaccine-preventable disease, yet they themselves have spread misinformation and obstructed progress in understanding this illness and bringing hope to so many people who suffer, and yes die, of this illness.

I'm sick of the double standard-literally.