This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Sunday, June 26, 2022

Pharma Meds for Allergy, Asthma, and Mast Cell DIsease

Anticholinergic
Dementia 'linked' to common over-the-counter drugs
All medicines can have side-effects and anticholinergic-type drugs that block a neurotransmitter called acetylcholine are no exception. 

Antihistamines:
There are 4 types of histamine receptors on cells, named H1 through H4, each one is involved in different types of reactions and autoimmune conditions.   

OTC antihistamines are H1 blockers, meaning that they block the Histamine 1
Allegra (fexofenadine)

Benadryl (Diphenhydramine)
How I almost killed my mom with a simple anti-itch pill

Brompheniramine- serotonergic (led to discovery of SSRIs)
 
Chlorphenamine- serotonergic
A large study on people 65 years old or older, linked the development of Alzheimer's disease and other forms of dementia to the use of chlorphenamine and other first-generation antihistamines, due to their anticholinergic properties.

Chlortrimaton

Cimetidine (H2)

Claritin
Cyproheptadine (Periactin) is an antihistamine that can be used to treat serotonin toxicity and is used to increase appetite in some people.

Doxepin

Epinephrine (Adrenaline)

Xyzal (levocetirizine)

Zantac (Famotadine)

Zyrtec
 
"In January of 1997, the FDA recommended that the terfenadine-containing drugs be removed from the market and that physicians consider alternative medications for their patients. The reason for concern is the existence of potentially severe drug interactions with SELDANE. The interactions result in abnormalities of the electrical impulse that stimulates the heart to contract and pump blood, and the interactions could be life threatening." 


ASTHMA meds

Asthmanefrin (epinephrine for nebulizing which is available OTC)

Albuterol/ventolin

Xopenex (levalbuterol hydrochloride)
 
 
Monoclonal Antibodies ( -mab drugs)

Fasenra (Benralizumab)

Xolair (Omalizumab)

MAST CELL STABILIZERS

Cromolyn Sodium (Gastrocrom)

Ketotifen

Dupixent is an interleukin-4 receptor alpha antagonist and interleukins are another type of mediator released from mast cells

Dipulimab interleukin 4 inhibitor


EOSINOPHILIC MEDS

Dexpramipexole (steroid-sparing med for HES)
Dexpramipexole As a Steroid-Sparing Agent in Hypereosinophilic Syndromes (HES): An Open-Label Proof-of-Concept Study

Singulair (Monteleukast)


ANTI-IL5 biologics

Nucala (Mepolizumab)  Prescribing Information


Benralizumab (Fasenra) for Severe Eosinophilic Asthma

TKIs and other Chemo:

Gleevec (Imatinib)



Periactin (cyproheptadine) is both antihistamine and antiserotonergic.  As an allergy med it is used to treat runny nose, watery eyes, and a few other symptoms.  It is also used as an appetite stimulant.  It can also be used to treat symptoms caused by serotonin toxicity.   It is more associated with liver injury than other antihistamines, but this is still considered rare and not life-threatening.


Older antihistamines, such as Periactin (cyproheptadine), have actually been used for the purpose of increasing appetite and weight gain in underweight children and cancer patients undergoing chemotherapy.

MISC

FDA approves Xermelo for carcinoid syndrome diarrhea

Leucovorin is a form of folinic acid used off-label to treat Cerebral Folate Deficiency.
The basis for folinic acid treatment in neuro-psychiatric disorders.

Prednisone and other corticosteroids
 
Rydapt (Midostaurin)

Other Medical Supplies:

Aplicare Povidone Iodine Scrub Saturated Swabsticks, 500/c

Aplicare Povidone Iodine Liquid Solution, Pouch, 1 oz, 200/cs



 Gray, Shelly L.; Anderson, Melissa L.; Dublin, Sascha; Hanlon, Joseph T.; Hubbard, Rebecca; Walker, Rod; Yu, Onchee; Crane, Paul K.; Larson, Eric B. (26 January 2015). "Cumulative Use of Strong Anticholinergics and Incident Dementia: A Prospective Cohort Study"JAMA Intern. Med175 (3): 401–7. doi:10.1001/jamainternmed.2014.7663PMC 4358759PMID 25621434.



Thursday, June 23, 2022

NAC and Glutathione

NAC, which stands for N-Acetyl-L-Cysteine, is an amino acid that is used by our cells to make glutathione.  Glutathione is one of our bodies' primary antioxidants and an important part of our bodies' detoxification system.  All of our cells make it but it is in the highest concentration in the liver.  It also helps regulate the life cycle of a cell by triggering apoptosis (cell death) if 15% or more of the glutathione inside of the cell is oxidized.  Because it balances neurotransmitters it can be helpful in treating OCD, addictions, depression, anxiety, bipolar disorder, and even schizophrenia.  It is also used to treat COPD, asthma, brain fog, improve vision, treat acne, and break down mucus.  Glutathione is made from sulfur so eating sulfur-rich foods, including eggs, onions, and cruciferous vegetables, provides the raw materials our cells need to make it.

It does this by combining the NAC with two other amino acids, glutamine and glycine.  NAC is the least prevalent of these three amino acids so the cell can only make as much glutathione as it has NAC to make it with, which is why it's what's called the "rate-limiting step".  For this reason supplementing NAC can increase the amount of glutathione that is made by your cells. Glutathione is one of the primary antioxidants that our bodies make to protect itself from many harmful things, including oxidative stress, toxic substances such as alcohol, and some medications (most notably acetaminophen aka Tylenol).  

The reason to use N-Acetyl-Cysteine instead of just regular cysteine is because the N-Acetyl group protects the cysteine from stomach acid and allows it to be absorbed.  Mold exposure reduces our ability to make enough glutathione.  Arsenic exposure slows an enzyme needed to make glutathione (unhealthy levels of arsenic have been found in some foods including rice and apples).  If NAC becomes unavailable, which it might because the FDA is considering restricting it, glutathione can be taken directly as a supplement, which is best absorbed if it is liposomal (contained within tiny sacs that protect it from stomach acid.  Selenium, molybdenum, and riboflavin are important for our bodies to make adequate glutathione. 

NAC N-Acetylcysteine (DrBeen medical lectures)

No more NAC ?? Here’s how to replace it with another natural supplement - Dr Jake Podcast Ep 02

What Happens If I Can't Get N-Acetyl Cysteine (NAC)?

Applications of N-Acetylcysteine (NAC) - From Addiction to Autism By Prof Berk

 

Thursday, June 16, 2022

Neuroinflammation

Neuroinflammation is inflammation of the brain, and is a basic finding in autism, ME/CFS, mast cell disease, and many other neurological disorders (or disorders with neurological symptoms).  Neuroinflammation can be difficult to recognize, test for, and treat.  Inflammation in general is a response of the immune system to try to protect and heal the body from threats (or perceived threats) such as infection or injury.  In the short term, inflammation is important as part of the healing process.  However, problems occur when the inflammation doesn't get turned off for some reason and becomes chronic.  Chronic inflammation is very hard on the body and is at the root of many diseases.  This article from the New Yorker called Inflamed provides a good place to start in learning more about inflammation in general.

What is neuroinflammation?  This is a short video by Dr Younger who is the director of The Pain and Fatigue Laboratory at UAB.  He says that neuroinflammation is essentially the same as inflammation elsewhere in the body, but because the immune system is different in the brain inflammation is expressed differently there.  Inflammation occurs when an injury or illness damages our tissues in some way- it is our body's way of alerting itself to an injury, illness, or threat and then coordinating the immune response to protect and heal itself.  Similarly, inflammation in the brain (from an illness or head injury for example) is also meant to heal the damaged tissues in the brain.  While inflamed tissues in the body tend to hurt, turn red, feel hot to the touch, and be visibly swollen, none of this is directly evident when the brain gets inflamed.  

We are not able to feel directly if our brains are inflamed, because there aren't the kind of pain receptors in the brain that we have elsewhere.  However, inflammation interferes with the functioning of the inflamed body part so there will be neurological symptoms from the neuroinflammation.  When we are very sick, with a bad flu for example, the way that we struggle to think clearly and function cognitively is one example of what neuroinflammation can look and feel like.

Neuroinflammation appears to be one of the central features in many neurological disorders, such as:

Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
" Neuroinflammation is present in widespread brain areas in CFS/ME patients and was associated with the severity of neuropsychologic symptoms. Evaluation of neuroinflammation in CFS/ME patients may be essential for understanding the core pathophysiology and for developing objective diagnostic criteria and effective medical treatments."

Brain Inflammation A Hallmark Of Autism, Large-Scale Analysis Shows
"Previous studies had identified autism-associated abnormalities in cells that support neurons in the brain and spinal cord. In this study, Arking says, the research team was able to narrow in on a specific type of support cell known as a microglial cell, which polices the brain for pathogens and other threats. In the autism brains, the microglia appeared to be perpetually activated, with their genes for inflammation responses turned on. “This type of inflammation is not well understood, but it highlights the lack of current understanding about how innate immunity controls neural circuits,” says Andrew West, Ph.D., an associate professor of neurology at the University of Alabama at Birmingham who was involved in the study."

Neuroinflammation in Fibromyalgia and ME/CFS


Histamine regulation of microglia: Gene-environment interaction in the regulation of central nervous system inflammation.

Neuroinflammation, microglia and mast cells in the pathophysiology of neurocognitive disorders: a review
"Cells of the immune system and the central nervous system are capable of interacting with each other. The former cell populations respond to infection, tissue injury and trauma by releasing substances capable of provoking an inflammatory reaction. Inflammation is now recognized as a key feature in nervous system pathologies such as chronic pain, neurodegenerative diseases, stroke, spinal cord injury, and neuropsychiatric disorders such as anxiety/depression and schizophrenia. Neuroinflammation may also raise the brain's sensitivity to stress, thereby effecting stress-related neuropsychiatric disorders like anxiety or depression. The cytokine network plays a large part in how immune system cells influence the central nervous system. Further, inflammation resulting from activation of innate immune system cells in the periphery can impact on central nervous system behaviors, such as depression and cognitive performance. In this review, we will present the reader with the current state of knowledge which implicates both microglia and mast cells, two of the principle innate immune cell populations, in neuroinflammation. Further, we shall make the case that dysregulation of microglia and mast cells may impact cognitive performance and, even more importantly, how their cell-cell interactions can work to not only promote but also amplify neuroinflammation. Finally, we will use this information to provide a starting point to propose therapeutic approaches based upon naturally-occurring lipid signaling molecules. "

Microglia and mast cells: two tracks on the road to neuroinflammation
"One of the more important recent advances in neuroscience research is the understanding that there is extensive communication between the immune system and the central nervous system (CNS). Proinflammatory cytokines play a key role in this communication. The emerging realization is that glia and microglia, in particular, (which are the brain's resident macrophages), constitute an important source of inflammatory mediators and may have fundamental roles in CNS disorders from neuropathic pain and epilepsy to neurodegenerative diseases. Microglia respond also to proinflammatory signals released from other non-neuronal cells, principally those of immune origin. Mast cells are of particular relevance in this context. These immunity-related cells, while resident in the CNS, are capable of migrating across the blood-spinal cord and blood-brain barriers in situations where the barrier is compromised as a result of CNS pathology. Emerging evidence suggests the possibility of mast cell-glia communications and opens exciting new perspectives for designing therapies to target neuroinflammation by differentially modulating the activation of non-neuronal cells normally controlling neuronal sensitization, both peripherally and centrally. This review aims to provide an overview of recent progress relating to the pathobiology of neuroinflammation, the role of microglia, neuroimmune interactions involving mast cells, in particular, and the possibility that mast cell-microglia crosstalk may contribute to the exacerbation of acute symptoms of chronic neurodegenerative disease and accelerate disease progression, as well as promote pain transmission pathways. We conclude by considering the therapeutic potential of treating systemic inflammation or blockade of signaling pathways from the periphery to the brain in such settings."

Mast cells and microglia and neuroinflammation

 



Skills and Tools for Coping with Mental Illness

 
When there is a voice in your head that tells you how bad you are- that you are a disappointment, or a failure, or that you deserve bad treatment, think of them as sitting at the head of the table of your "board of directors" and then think about who else can occupy that chair and tell you positive and loving things about yourself.

A Creative Technique to Help Clients Face Fear
If there is a fear, or other strong emotion that is strong enough that you miss out on things that are important to you because you are avoiding the fear or emotion, you can give that feeling a name (and an appearance if you want) and talk to it.  Tell it that you are in charge.  You can invite it to come along or to participate but that it will be on your terms.

How to Deal With Intrusive Thoughts
The idea here is that your brain gives you more of things that bring you a sense of joy or accomplishment, so if you respond to intrusive thoughts by focusing on them to resolve them.

A few tools from Peter Levine
Place your right hand under your left arm, in the armpit along the side of the heart, and place your left hand on your right shoulder.  This can help us feel that our strong, triggered feelings are safely contained, which can make them feel less overwhelming.  Another tool to try is to place one hand on the forehead, and the other on the chest.  Try to feel what is going on in the body between the hands, what sensations can you feel?  Once you feel some sort of change or shift, take the hand from the forehead and place it on the belly.  Again, feel inside between the hands and feel for sort of shift.  This can help a person fall asleep more easily and have more productive dreams.  Another idea is tapping or patting the skin all over to feel where your boundary is.

Monday, June 13, 2022

Mito Dysfunction in autism

Evidence of Mitochondrial Dysfunction in Autism and Implications for Treatment
Daniel A. Rossignol, J. Jeffrey Bradstreet, International Child Development Resource Center,

"Classical mitochondrial diseases occur in a subset of individuals with autism and are usually caused by genetic anomalies or mitochondrial respiratory pathway deficits. However, in many cases of autism, there is evidence of mitochondrial dysfunction (MtD) without the classic features associated with mitochondrial disease. MtD appears to be more common in autism and presents with less severe signs and symptoms. It is not associated with discernible mitochondrial pathology in muscle biopsy specimens despite objective evidence of lowered mitochondrial functioning. Exposure to environmental toxins is the likely etiology for MtD in autism. This dysfunction then contributes to a number of diagnostic symptoms and comorbidities observed in autism including: cognitive impairment, language deficits, abnormal energy metabolism, chronic gastrointestinal problems, abnormalities in fatty acid oxidation, and increased oxidative stress. MtD and oxidative stress may also explain the high male to female ratio found in autism due to increased male vulnerability to these dysfunctions.
Biomarkers for mitochondrial dysfunction have been identified, but seem widely under-utilized despite available therapeutic interventions. Nutritional supplementation to decrease oxidative stress along with factors to improve reduced glutathione, as well as hyperbaric oxygen therapy (HBOT) represent supported and rationale approaches. The underlying pathophysiology and autistic symptoms of affected individuals would be expected to either improve or cease worsening once effective treatment for MtD is implemented."

Epidemiology of autism spectrum disorder in Portugal: prevalence, clinical characterization, and medical conditions

"The objective of this study was to estimate the prevalence of autistic spectrum disorder (ASD) and identify its clinical characterization, and medical conditions in a paediatric population in Portugal. A school survey was conducted in elementary schools, targeting 332,808 school-aged children in the mainland and 10,910 in the Azores islands. Referred children were directly assessed using the Diagnostic and Statistical Manual of Mental Disorders (4th ed.), the Autism Diagnostic Interview–Revised, and the Childhood Autism Rating Scale. Clinical history and a laboratory investigation was performed. In parallel, a systematic multi-source search of children known to have autism was carried out in a restricted region. The global prevalence of ASD per 10,000 was 9.2 in mainland, and 15.6 in the Azores, with intriguing regional differences. A diversity of associated medical conditions was documented in 20%, with an unexpectedly high rate of mitochondrial respiratory chain disorders."

Sunday, June 12, 2022

Unconventional Cancer Treatments

Using sound waves to destroy cancer | Christine Gibbons | TEDxDetroit
A new treatment for cancer is presented here, called Histotripsy, which uses sound energy delivered by ultrasound to destroy cancerous tumors.  Using sound to create heat to kill tumors has been tried, but this is a new approach that actually uses the sound to create mechanical forces.  These mechanical forces are more precise than heat and lead to less pain and faster recovery.  This concept is illustrated at 3:38 

The Rife Machine
In 1938, Dr Royal Raymond Rife invented a machine that can produce the resonant frequency of a cancer or pathogen, meaning it can find the frequency of that entity and then magnify the sound waves until it tears apart the entity.  He cured 16 terminally ill cancer patients.  Other researchers were able to significantly reduce the number of malignant cells in leukemia.  This is the same force that explains why wine glasses will shatter if someone sings a certain note very loudly near them.  Anthony Holland, a musician, began studying Rife's work, calling it Novobiotronics.  In October 2013, he published a scientific paper showing significant improvements in cancer and antibiotic resistant bacteria.  Additional research, done in 2011 by Peter Jurdiaf, used sound and light frequencies to modify and reprogram DNA.  His research successfully changed frog embryos to salamander embryos.  It is currently believed by many that around 97% of the DNA in human cells is useless and is referred to as "junk DNA". 

Wednesday, May 25, 2022

Neuropathic Injuries From SARS CoV 2 Vaccination

First Ever NIH/NIND Study on Vaccine Caused Neurological Injuries (Preprint)

NIH/NIND Vaccine Injury Study Participant Interview (Dr. Danice Hertz)

Neuropathic symptoms with SARS-CoV-2 vaccination

"This observational study suggests that a variety of neuropathic symptoms may manifest after SARS-CoV-2 vaccinations and in some patients might be an immune-mediated process." 
'100% reported sensory symptoms comprising severe face and/or limb paresthesias, and 61% had orthostasis, heat intolerance and palpitations. Autonomic testing in 12 identified seven with reduced distal sweat production and six with positional orthostatic tachycardia syndrome. Among 16 with lower-leg skin biopsies, 31% had diagnostic/subthreshold epidermal neurite densities (≤5%), 13% were borderline (5.01-10%) and 19% showed abnormal axonal swelling. Biopsies from randomly selected five patients that were evaluated for immune complexes showed deposition of complement C4d in endothelial cells. Electrodiagnostic test results were normal in 94% (16/17). Together, 52% (12/23) of patients had objective evidence of small-fiber peripheral neuropathy."
In the study it is claimed that some of the patients received IVIG treatments and that all symptoms resolved with two weeks (with minor residual symptoms in one), which is know to be untrue for at least one participant, whose symptoms returned in full force when the IVIG wore off after about 3 weeks.  It is well known that IVIG only cleans out the circulating antibodies and antigens temporarily and that these often begin to return after about 3 weeks. 

Why Was Michelle Zimmerman Running Into The Walls?
Dr Mobeen inteerviews Michelle Zimmerman regarding her serious neuropathic consequences following COVID vaccination (she received a single shot of (Johnson and Johnson).  It's been well documented that she never had COVID.  Within 5 minutes of receiving her vaccine, her injection arm went completely numb.  Her wrist dropped and she was unable to move it, she had shooting pain that went up her arm into her ear, her tongue and throat became swollen, and that evening she became unresponsive with a fever of 104.8 and her heart rate became very high.  The medical advice was that she was tired and to let her sleep it off.  When she woke up in the hospital she was completely paralyzed, unable to even open her eyes.  In the time immediately after this she had extreme sensitivity to light and sound and felt intense pain in her abdomen and back.  She was too weak to stand on her own in the shower.  She makes the point that she got the vaccine to show her support of science, she assumed that there were ethical safeguards in place for safety, and was disturbed when she found out later how little was known and how much pressure there was to stay quiet about her injuries to keep from bringing any doubt onto the vaccine program.  She is an accomplished scientist herself and says "good science asks questions, they don't disregard questions.  They find answers to do things better next round. 

She did extensive research herself that she discusses here.  SPECT scans, which image the brain with the aid of a radioactive tracer, showed reduced functioning in several areas of her brain including the Prefrontal Cortex (responsible for working memory and focus) and the Temporal Lobes (speech and language).  MRIs failed to pick up on these injuries.  She presented with what she was told was a stroke-like episode, but not a stroke itself, in which she had left-sided weakness and was unable to respond or speak.  She had vestibular hypofunction.  For over a year she had been tipping to the right which is something the brain is doing to try to accommodate the altered input from one side.  This means that things weren't where she saw them to be so when she would reach, she would reach in the wrong direction. 

Her situation involves vision anomalies caused by some sort of concussive or traumatic brain injury.  In doing research in trying to get help she found that this is a known condition that has been studied in soldiers returning from abroad.  She has 20/20 vision, and there is nothing wrong with her eyeballs themselves, but there has been damage that affects the signal from her eyes into her brain.  One aspect of her condition is called a Visual Midline Shift.  Additional visual symptoms included shaking of her eyes, white lights breaking down into a rainbow as her eyes moved, and sometimes it appeared as though she was looking through a foggy window. 

Once she realized that her problems were visual she began to research them and found that people with Long COVID, post COVID vaccination injuries, people who had been in car crashes or had head injuries from sports, seemed to share similar symptoms.  Symptoms can be made worse by sitting in a moving car (car sickness), being on an escalator, or other types of movement.  Also trying to stand up straight.  A scopolamine patch made it worse, showing that this was not a neurotransmitter issue like it is in motion sickness.  These things brought on nausea, dizziness,   Areas of her visual field were sometimes blocked out with a blurry patch which is a symptom shared by some people with ocular migraines.  She could not be diagnosed with either TBI or concussion because both require that there had been impact to the head.  Her PCP told her that her MRI did look like a concussion patient, and was willing to diagnose "encephalopathy".

She worked with Dr Cap and Katie Chapman.  Dr Cap recognized what was happening.  Her diagnosis stated that she had "deficiencies of saccadic eye movement", that she had "significantly reduced visual skills required for efficient and effective reading and computer work", and that she was "presenting very similar to TBI patient.  Noticing difficulty with light sensitivity, tracking, visual motion hypersensitivity, memory, and fatigue."  She said that reading was very painful and it seemed that her eyes were bouncing around.  She had speech difficulties that her vestibular therapist described as like those that an older person or person with dementia has, as if her brain is trying to do too many taxing things at one time.  Her vestibular therapist is named Dr Sarah Maddingly.  The therapist figured out that her speech problems occurred because her visual processing problems were so taxing to her brain that they caused her brain to "drop" some other taxing abilities when it became too tired.

One therapeutic approach to treating this visual problem is called Binasal Occlusion, in which a pair of glasses frames (sometimes without lenses) has opaque pieces added on to block visual input from some directions.  The idea is that this helps to reset how her brain and eyes process information.  She has also had benefit from some medications, HBOT dives, methylated B vitamins had helped with headaches (but not standard B vitamins), she is taking fish oil because it is known to treat vascular damage and inflammation, and Astaxanthin because it is a powerful antioxidant. 

She has a lot of insights about the COVID vaccination problem and medical science, even just science in general.  One of these is the idea that when designing something, such as a response to a pandemic, it is important to think in terms of multiple iterations...of finding out what worked, what didn't work, and how to make changes to the next version rather than simply saying that the first attempt was perfect and needs no adjustment.