Mold-Induced Illness

(work in progress)

Significant exposure to mold and related organisms, usually prolonged, can cause a wide range of symptoms and conditions.  This is a common cause or exacerbating factor for MCAS.  Common symptoms of mold illness include fatigue, headaches, digestive problems, respiratory problems (including asthma and shortness-of-breath), cough, sore throat, allergies and reactions that look like allergies (such as sneezing, hives, rashes), excessive thirst, muscle cramps, joint pain, stiffness in the morning, sleep problems, night sweats, brain fog and related cognitive issues (such as problems with memory and executive function), light sensitivity, blurred vision,  numbness, tingling, and tremors.

Mold illness can be diagnosed as many things, including- ME/CFS, Fibromyalgia, MS, Somatization disorders, anxiety, depression, PTSD, ADHD, dementia, Irritable Bowel Syndrome, and more.  That is to say that you may meet criteria for one or more of these diagnoses, but mold exposure is the reason that you have the symptoms in the first place.  For some people, treating and healing from the mold illness allows them to heal and lose the diagnosis.  Whether or not they "actually had" the illness then becomes a semantic issue rather than a scientific one.

The Basics of Mold Illness and Toxicity
Mold Toxicity - Depression, Anxiety, Fatigue, Brain Fog & Inattention 
Mold "can contribute to Pyrrole Disorder due the stress it puts on the body.  It can lead to elevated copper by overwhelming one of the antioxidants in the body that regulates copper.  Because it interferes with the immune system, it can lead to a susceptibility to candida/yeast, Lyme and its co-infections.  It also frequently worsens mast cell activation."

Mold can thrive in water damaged buildings or anywhere indoors where there is retained moisture, including AC units and ductwork.  The mold thrives because it has the ideal conditions for growth and because it doesn't have the competition that keeps it in check outdoors.  Additionally, mold spores and toxins build up inside without the natural ventilation that exists outside.  Mold can poison us with toxins and it can also colonize our bodies, such as our sinuses and GI tract.  Some people also have mold allergy.

"Seemingly 25% of people are unable to make antibodies to mold toxins. Add to that the 50% of buildings that have water damage, and you have a lot of people who are unknowingly becoming toxic while spending time in affected homes, schools, workplaces, cars, dorms, and nurseries."

"Mold toxins basically go from the body, to the liver and gallbladder where they are bound to bile and sent out into the gastrointestinal tract. The bile, however, is recycled (as a means of conservation), and thus take toxins back into the body."  

Some of the symptoms that she lists that I don't see listed often include: electric shock sensations, ice-pick pains, Atypical Parkinson's Disease, Atypical ALS, Psychogenic seizures or pseudo-seizures​​, Tics, spasms and seizure like events; Sensitivity to light touch, Suspected or Diagnosed PANS/Pediatric Acute-Onset Neuropsychiatric Syndrome, Rapid weight gain, Body temperature dysregulation, and diagnosis of fibromyalgia, or chronic fatigue.  
Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome
"Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection."

Most doctors who specialize in mold illness use urinary mycotoxin testing to figure out which mycotoxins a patient is dealing with, as treatment consists largely of the use of binders and different ones bind different toxins  

Comprehensive Guide to Mycotoxin Binders

MCAS & Mold: Fungal Colonization of the Sinuses (video)

Mold often co-occurs with other organisms, such as bacteria, in water-damaged buildings.
Aerobic Actinomycetes of Clinical Significance

CIRS (Chronic Inflammatory Response Syndrome)
There is another condition called CIRS (Chronic Inflammatory Response Syndrome) which seems to me to be essentially another name for MCAS, but was recognized and described without as thorough an understanding of the underlying immunological mechanisms.  CIRS-WDB refers specifically to the condition when developed after prolonged exposure to the inside of water-damaged buildings.  According to this 2024 study, CIRS is "an acquired medical condition characterized by innate immune dysregulation following respiratory exposure to water-damaged buildings (WDB).", and states that ME/CFS is "a common misdiagnosis of CIRS".  MedicineNet gives a more detailed description of CIRS "a multisystem and multi-symptom illness that occurs when a person gets exposed to toxins such as mold spores or biotoxins found in tick or spider bites. These toxins get attached to the immune system to trigger an inflammatory response and induce hormonal changes. The immune system produces an excess of cytokines that can lead to the immune system attacking its tissues, causing inflammation and other associated symptoms."  This source further defines biotoxins as "fat-soluble molecules that travel from cell to cell without entering the bloodstream" and further states that "measuring biotoxins in the blood is difficult, but doctors usually identify them by the damage inflicted on various organs."

According to Dr Shoemaker, there are some HLA-DR/DQ haplotypes (combinations of genes that are inherited together) that make a person less able to clear biotoxins, such as mold toxins, from their bodies, making them more likely to develop CIRS when exposed to mold, which then cause the innate immune system to overreact and lead to chronic inflammation.  These include:
HLA-DR4-3-53
HLA-DR7-2/3-53
HLA-DR11-3-52B
HLA-DR13-6-52A/B/C
HLA-DR17-2-52B
HLA-DR18-4-52A

Diagnostic Process for Chronic Inflammatory Response Syndrome (CIRS): A Consensus Statement
Report of the Consensus Committee of Surviving Mold
"Clinical management of patients with a complex, multisystem, multi-symptom illness identified as a chronic inflammatory response syndrome (CIRS) has expanded. Often associated with illness due to exposure to low molecular weight biotoxins and inflammagens found (i) inside water-damaged buildings (WDB); (ii) following exposure to blooms of cyanobacteria; (iii) following consumption of ciguatoxic fish; and (iv) following confirmed acute Lyme disease, persistent despite reasonable use of antibiotics, CIRS is increasingly recognized. A need for a formal case definition and case management protocol has arisen. Patients with CIRS will have abnormalities in innate responses, reduced levels of
regulatory neuropeptides MSH and VIP, elevated inflammatory markers of C4a, MMP9 and TGF beta-1.  Systemic illness, based on abnormal gene activation and suppression, as shown by RNA Seq and transcriptomics, requires a multi-factorial, rigorous diagnostic assessment to assist in both differential diagnosis and monitoring response to therapy. A consensus statement is herein provided to assist practitioners in case identification and management."

Chronic inflammatory response syndrome: a review of the evidence of clinical efficacy of treatment

Dr. Scott McMahon, a board-certified pediatrician and CIRS specialist (Podcast)

Treatment for Mold Illness
The Shoemaker Protocol is widely recognized as the best treatment for mold-induced illness, whether or not you call it CIRS.  

Doctors who specialize in treating people with mold-induced illness tend to use urinary mycotoxin testing to identify which mycotoxins a person is dealing with, and prescribe substances that bind and remove those specific toxins as part of the treatment protocol.  Examples of binders include bentonite clay, activated charcoal, chlorella, cholestyramine, and colesevelam HCI. 

Finding and Remediating Mold in Your Environment
Consensus Statement for Microbial Remediation 2020
(Indoor Environmental Professional Panel of Surviving Mold)

Dr Jill Carnahan is considered by many to be an authority on cleaning mold and mold remediation.  This page from her website has the basics:
How to Get Rid of Mold – Definitive Mold Removal Guide

"Michael Rubino provides valuable resources and professional guidance on safely addressing mold issues in your home. His website offers detailed information on proper mold cleaning techniques, prevention, and the importance of air quality in maintaining a healthy living environment."

This is information given to me by someone with specialized knowledge of building materials:
"MDF is Medium-Density Fiberboard. There is also OSB, or Oriented Strand Board, and there are number of other building products like particle board made with the tailings or trash from milling lumber, held together by resins. The wood millings are damp from cutting, lay around in damp piles, and develop mold. The mold in this wood is fed by the resins used to make it into building materials. The paper backing on drywall has the same issue. I understand that there is now third-party certified mold-free OSB and MDF made differently."

ImmunoLytics swab tests

Resources Regarding Mold and Mold Illness:
Dr Ritchie Shoemaker's "Surviving Mold" website

International Society For Environmentally Acquired Illnesses / ISEAI website

American Academy for Environmental Medicine 
(database of practitioners who treat environmentally acquired illnesses including mold)

Dr Neil Nathan, MD is an expert in mold illness.  This book from him is highly regarded:
Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness

Dr Jill Crista, ND is a highly respected mold doctor.  "Dr. Jill focuses on conditions that cause injury to the brain and nervous system, including mold, PANS/PANDAS, Lyme disease, and concussion."
Dr Jill Crista online courses about mold 

Dr. Efrat Lamandre focuses on integrative and functional medicine, offering solutions for mold toxicity, chronic illnesses, and environmental health issues. Her practice emphasizes a holistic approach to diagnosing and treating mold-related conditions. Her website provides information and support for those navigating mold toxicity and other environmental health concerns.
Toxic Overload and Chronic Illness: How Mold, Plastics and Pesticides Make You Sick

#moldfinders: RADIO (Podcast)
Mold expert Brian Karr shares his secrets on how to find and remove mold and mycotoxins from your home,

The Virginia Center for Health and Wellness (has video series from Dr Andrew Heyman 

National Institute of Environmental Health Sciences Mold Information

CDC Information About Mold 

EPA Information About Mold

RealTime Laboratories, Inc. (RTL)
"RealTime Laboratories, Inc. (RTL) is a CAP and CLIA accredited clinical and environmental diagnostic laboratory that specializes in testing for and identifying hazardous mold, toxins, and infectious diseases."  They have a free e-book called:
Mycotoxins 101: An Introduction to Crucial Facts

MyMycoLab provides mycotoxin testing

Mold prevention strategies and possible health effects in the aftermath of hurricanes and major floods

The Hidden Connection: COVID, Mold Exposure, and Viral Reactivation 

A comprehensive review of mold research literature from 2011 - 2018

Legal Resources
Well.Law is a legal practice that understands the complexities of mold-related and environmental illness cases. They support clients navigating housing issues, disability rights, and toxic exposure with compassion and legal expertise. She started the personal injury firm she couldn't find.

How to get the most insurance money for mold remediation
"Learn the secrets insurance companies don’t want you to know that will maximize your insurance coverage amount."

Mold Insurance Playbook with Corey Levy (Podcast)
"It can be really expensive... But what if you didn’t have to pay full price for remediation? That’d be awesome! Today we share our entire playbook on how to maximize your coverage! Here is the quick overview... and we go in depth on each one of these in the episode: 1) DON’T CALL YOUR INSURANCE COMPANY! 2) STOP the water 3) Mold Inspection 4) Get Remediation Bids 5) Hire a public adjuster 6) Now you can contact your insurance company... If you go out of order you can literally cost yourselves tens of 1,000s of dollars!"

Migraines

Migraine headaches are a neurological condition with significant vascular involvement.  They occur as a series of phases, usually four, which are the Premonitory Phase, the Aura Phase, the headache itself, and the Postdrome Phase.

The premonitory phase includes symptoms such as light sensitivity, sound sensitivity, fatigue, irritability, depression, muscle stiffness, and can begin as much as 3 days before the actual headache starts.  It is believed that the hypothalamus is involved in causing migraines, it is a part of the brain that is responsible for regulating the autonomic nervous system, which is the part of the nervous system that controls body functions involved in survival which are not under conscious awareness or control.  These include things like blood pressure, hormone regulation, temperature control, thirst and hunger, and respiration.  There seem to be many potential environmental triggers which can bring on a migraine, which vary from person to person, including hormonal changes, weather changes (particularly changes in barometric pressure, so can be triggered by impending rain storms), emotional stress, changes in sleep patterns (although these may also be symptoms of the migraine itself), neck pain, not eating, and things that are common mast cell triggers such as certain smells, foods, alcohol, smoke, exercise, bright lights, and sometimes sex. 

About a third of people who get migraines have an aural phase next.  There are four different kinds of auras associated with migraines- visual, sensory, language, and motor.  Visual auras include things like seeing spots, wavy lines, or a ring around lights.  Sensory aura can include neuralgia, which is tingling and/or numbness.  Language aura refers to problems speaking and finding the right words, and motor aura refers to weakness.  Many of these symptoms such as tingling/numbness and weakness often occur on only one side of the body.  It is believed that the aura phase is caused by something called Cortical Spreading Depression, which means that the neurons on the outside of the cerebrum (the main part of the brain) begin to fire less frequently in a pattern that spreads through the cortex the same way that ripples spread on the surface of water.  People who do not experience aura symptoms may be experiencing this spreading in areas of the brain that they are not consciously aware of. 

The headache phase involves pain (usually, but occasionally not) but also tends to involve additional symptoms such as nausea and vomiting, light and sound sensitivity, balance problems, visual disturbances, sensitivity to certain smells, and a pain symptom called Cutaneous Allodynia which is when even light touch on areas of the skin causes intense pain.  It is currently thought that the Cortical Spreading Depression that occurs earlier in the process activates the Trigeminal Vascular System, which includes activation of the trigeminal nerve.  All sensations on the skin of the face are transferred to the brain via the Trigeminal Nerve.  The Trigeminal Nerve also carries pain signals into the brain from the Dura Mater, which is a thick membrane of connective tissue surrounding the brain and inside the skull.  While the pain signals may be coming from the Dura Mater the pain may be perceived on the face due to referred pain.  Referred pain is when pain signals from different areas of the body activate areas in the brain that are close together and the brain confuses which area is the origin of the signal.
The Postdrome Phase is the final phase in which some of the symptoms, especially the pain, lingers.  This can feel as if your brain is bruised or has been through some sort of accident. 

What Are Migraines?

Menstrual migraines
 

Food Substitutions for Allergies and Special DIets

The following is a list of products and recipes for substitute foods to replace foods that need to be avoided due to allergies, intolerances, etc.  There has been a significant increase in the availability of such substitutes as allergies, food intolerances, and special diets have become much more common in the US in recent years, but many of these products don't taste good or don't work well for a variety of reasons.  So although there are a lot more options now it is still very helpful to have suggestions for which products are best.  The products and recipes listed below are ones that I have either tried myself and liked or have been liked and recommended by people I know.  Of course tastes are very individual so this is no guarantee that others will like them.  They are listed according to the food or ingredient that needs to be avoided.

NOTE- many of these foods contain ingredients that are problematic for many people, so it should go without saying to read the labels very carefully.  Inclusion on this list is not an endorsement of the food or ingredient, it is included so that people can decide for themselves what they want to avoid or not.

How to Make Cooking Substitutions (from New York Times)

ALTERNATIVE SWEETENERS
D'Vash Date Nectar
Organic Coconut Nectar
Organic Cassava Syrup (fructose-free sweetener)
Mesquite Bean Jelly (very similar to honey)

MULTIPLE ALLERGENS
Enjoy Life Products (mostly snacks and some baking ingredients including chocolate chips)
Bob's Red Mill (many varieties of flour, grains, and other baking ingredients)
Coconut Secret (organic snacks, flour, sweetener, sauces, etc.)
Go Raw (Raw, organic, non-GMO, vegan, GF, dairy-free, soy free snacks)
Amanda's Own Confections (mostly chocolate and other candy, all top 8 allergen free)
Pascha Chocolate (Organic and no cross contamination)
Heavenly Organics (chocolate patties, organic cane sugar, honey)
Eating Evolved (Organic, vegan, GF, dairy free chocolate products)
Unreal candies (Organic, non-GMO, GF, dairy-free, some are peanut free)
Sun Cups (Sunflower butter cups that are nut-free and gluten-free, some flavors are free of other allergens as well)
Star Anise Foods (Vietnamese foods that are free of GMOs, gluten, soy, dairy, MSG, and more)
Yai's Thai (Thai sauces and condiments that are non-GMO, no MSG, GF, dairy-free, and many are nut free)

DAIRY and MILK
So Delicious dairy-free alternatives (Dairy-free milks, ice cream, yogurt, cheese, and more.  Many products are organic, non-GMO, gluten-free, soy-free, and free of other allergens)
Laird Superfoods (dairy-free creamer, coffee, and coconut water hydrating drinks)
Teese vegan cheese 
Daiya Foods (dairy substitutes including cheese, cream cheese, yogurt, sauces, dressings, and frozen pizza and cheesecake)
Rebel Kitchen (organic coffee and tea drinks made with coconut milk)
Cocomels (organic and non-GMO caramels made from coconut milk)
Ollois homeopathic medicine (made without lactose)
Make your own vegan "butter" (aka margarine)  Ingredients that you need to avoid can be replaced.
Avocado can be used in place of some soft cheeses (such as cream cheese).
 Whipped coffee foam is a good substitute for whipped cream with no dairy or egg.

CORN
Siete Foods (tortillas and tortilla chips)
The Real Coconut (tortillas and tortilla chips made from coconut flour)
Luke's Organic Brown Rice Chips
Forager (Organic, non-GMO, GF, dairy-free, corn-free, vegan vegetable chips)
Thrive Market organic coconut flakes cereal
Dr. Bronner's soaps (The Baby Unscented Pure Castile Soap is the mildest.  This company uses citric acid from beets rather than corn)
Pamela's baking powder

PEANUTS and/or TREE NUTS
Dastony nut and seed butters (organic, many options of seed butters and unusual nut butters)
NuttZo Peanut-free nut butter
Sunbutter
Free2b suncups
Pumpkin seed butter
Almond cashew coconut butter recipe
Free2b (top 12 allergen-free chocolate and snacks, including peanut-free sunflower butter cups)

SOY
Coconut Secret (Organic, non-GMO, gluten-free, soy-free replacements for soy sauce and teriyaki sauce.  They also make baking and cooking ingredients such as flour, vinegar, sugar, and candy)
Sir Kensington's condiments (Non-GMO, GF, soy-free mayo in several varieties, one is also egg-free)
South River Miso Company (soy-free miso)
Garbanzo tofu recipe
Make your own miso from chickpea

SPINACH
Spinach can be replaced with arugula in many recipes (especially for raw spinach).

WHEAT and GLUTEN
Tinkyada rice pasta
Ancient Harvest and POW! (Organic, non-GMO, GF pasta and hot cereal)
Chebe mixes (bread, breadsticks, focaccia, pizza crust, cinnamon rolls) Chebe recipe page
Watusee Foods (GF chickpea substitute for bread crumbs)
Yehuda Gluten-Free Matzo-Style Squares (and onion flavor)
I Heart Keenwah (snacks and hot cereal made from quinoa)
Otto's Cassava Flour (excellent gluten-free flour)
Authentic Foods Bette’s Gourmet Featherlight Rice Flour Blend

Vitamin B6 and B6 Deficiency

The active coenzyme form of vitamin B6 is called P5P (or sometimes PLP), and is involved in many functions in the body, including protein metabolism, the release of glucose from storage in glycogen, hemoglobin synthesis, fatty acid metabolism, the synthesis of neurotransmitters (in particular serotonin and dopamine), in hormone function and immune function.

Systemic inflammation may impair the function of Vitamin B6.  There are also several kinds of medications, including NSAIDs and oral contraceptives, that interfere with vitamin B6 metabolism.  Pregnancy and nursing increase B6 needs and low B6 can cause severe morning sickness.

"Vitamin B6, also called pyridoxine, is one of 8 B vitamins. All B vitamins help the body convert food (carbohydrates) into fuel (glucose), which is used to produce energy. These B vitamins, often referred to as B complex vitamins, also help the body metabolize fats and protein. B complex vitamins are needed for healthy skin, hair, eyes, and liver. They also help the nervous system function properly.  All B vitamins are water-soluble, meaning that the body does not store them."

"Dietary deficiency, though rare, can develop because extensive processing can deplete foods of vitamin B6.  Secondary deficiency most often results from protein-energy undernutrition,  malabsorption,  alcoholism, use of pyridoxine-inactivating drugs (eg, anticonvulsants, isoniazid, cycloserine, hydralazine, corticosteroids, penicillamine), and Excessive loss. Rarely, secondary deficiency results from increased metabolic demand (eg, in hyperthyroidism)."

"A new study shows a strong association between chronic inflammation and the essential vitamin found in foods such as lean meats, legumes, and vegetables. Researchers found that people with the lowest levels of vitamin B6 in their blood had the highest levels of chronic inflammation, based on a wide variety of indicators. Those with the most vitamin B6 circulating in the bloodstream were also the least likely to have indicators of inflammation."

Signs of B6 deficiency can include:

"Symptoms can include peripheral neuropathy, a pellagra-like syndrome, anemia, and seizures, which, particularly in infants, may not resolve when treated with anticonvulsants. Impaired metabolism (dependency) is rare; it causes various symptoms, including seizures, intellectual disability, and anemia. Diagnosis is usually clinical; no laboratory test readily assesses vitamin B6 status. Treatment consists of giving oral vitamin B6 and, when possible, treating the cause."

"Deficiency causes peripheral neuropathy and a pellagra-like syndrome, with seborrheic dermatitis, glossitis, and cheilosis, and, in adults, can cause depression, confusion, EEG abnormalities, and seizures. Rarely, deficiency or dependency causes seizures in infants. Seizures, particularly in infants, may be refractory to treatment with anticonvulsants. Normocytic, microcytic, or sideroblastic anemia can also develop."

"Other neurologic symptoms observed in severe vitamin B6 deficiency include irritability, depression, and confusion; additional symptoms include inflammation of the tongue, sores or ulcers of the mouth, and ulcers of the skin at the corners of the mouth."

"The American and Canadian Colleges of Obstetrics and Gynecology have recommended the use of vitamin B6 (pyridoxine hydrochloride, 10 mg) and doxylamine succinate (10 mg) as first-line therapy for NVP (nausea and vomiting in pregnancy)."

"One large study found that women who took 500 mg of vitamin B6 daily along with 1,000 mcg of cyanocobalamin (vitamin B12) and 2,500 mcg of folic acid reduced their risk of developing AMD (age-related macular degeneration), an eye disease that can cause loss of vision."

Possible toxicity of B6:

"Although vitamin B6 is a water-soluble vitamin and is excreted in the urine, long-term supplementation with very high doses of pyridoxine may result in painful neurological symptoms known as sensory neuropathy. Symptoms include pain and numbness of the extremities and in severe cases, difficulty walking. Sensory neuropathy typically develops at doses of pyridoxine in excess of 1,000 mg per day. However, there have been a few case reports of individuals who developed sensory neuropathies at doses of less than 500 mg daily over a period of months. Yet, none of the studies in which an objective neurological examination was performed reported evidence of sensory nerve damage at intakes below 200 mg pyridoxine daily. To prevent sensory neuropathy in virtually all individuals, the Food and Nutrition Board of the Institute of Medicine set the tolerable upper intake level (UL) for pyridoxine at 100 mg/day for adults."

Sources:
The Linus Pauling Institute at Oregon State University
http://lpi.oregonstate.edu/infocenter/vitamins/vitaminB6/

University of Maryland Medical Center
http://umm.edu/health/medical/altmed/supplement/vitamin-b6-pyridoxine

The Merck Manual
http://www.merckmanuals.com/professional/nutritional_disorders/vitamin_deficiency_dependency_and_toxicity/vitamin_b6.html

WebMD
http://www.webmd.com/heart/news/20120619/low-vitamin-b6-linked-to-inflammation

More Information:

Intake of vitamins B6 and C and the risk of kidney stones in women.
"Urinary oxalate is an important determinant of calcium oxalate kidney stone formation. High doses of vitamin B6 may decrease oxalate production.. A high intake of vitamin B6 was inversely associated with risk of stone formation."

B6-responsive disorders: a model of vitamin dependency.

"Pyridoxal phosphate is the cofactor for over 100 enzyme-catalysed reactions in the body, including many involved in the synthesis or catabolism of neurotransmitters. Inadequate levels of pyridoxal phosphate in the brain cause neurological dysfunction, particularly epilepsy. There are several different mechanisms that lead to an increased requirement for pyridoxine and/or pyridoxal phosphate. These include: (i) inborn errors affecting the pathways of B(6) vitamer metabolism; (ii) inborn errors that lead to accumulation of small molecules that react with pyridoxal phosphate and inactivate it; (iii) drugs that react with pyridoxal phosphate; (iv) coeliac disease, which is thought to lead to malabsorption of B(6) vitamers; (v) renal dialysis, which leads to increased losses of B(6) vitamers from the circulation; (vi) drugs that affect the metabolism of B(6) vitamers; and (vii) inborn errors affecting specific pyridoxal phosphate-dependent enzymes. The last show a very variable degree of pyridoxine responsiveness, from 90% in X-linked sideroblastic anaemia (delta-aminolevulinate synthase deficiency) through 50% in homocystinuria (cystathionine beta-synthase deficiency) to 5% in ornithinaemia with gyrate atrophy (ornithine delta-aminotransferase deficiency). The possible role of pyridoxal phosphate as a chaperone during folding of nascent enzymes is discussed. High-dose pyridoxine or pyridoxal phosphate may have deleterious side-effects (particularly peripheral neuropathy with pyridoxine) and this must be considered in treatment regimes. None the less, in some patients, particularly infants with intractable epilepsy, treatment with pyridoxine or pyridoxal phosphate can be life-saving, and in other infants with inborn errors of metabolism B(6) treatment can be extremely beneficial."

Vitamin B6 supplementation lowers inflammation in rheumatoid arthritis patients

"The September, 2010 issue of the European Journal of Clinical Nutrition reported a trial conducted by researchers in Taiwan which found an anti-inflammatory benefit for pyridoxine (vitamin B6) supplementation in rheumatoid arthritis patients."

The Basics of Pyroluria

Pyroluria (also called Pyrroluria, Pyrole Disorder, Mauve Factor) is generally considered to be a genetic condition that causes the overproduction of a substance (usually called kryptopyrrole or pyrole) during the synthesis of hemoglobin that binds to circulating zinc and vitamin B6, causing  a chronic deficiency in those nutrients.  It also disrupts fatty acid metabolism and can lead to a deficiency of arachidonic acid.  The many symptoms of Pyroluria are due to these deficiencies.  Pyroluria seems to strongly run in families so it is important to consider the health history of a person's birth family when considering the possibility of Pyroluria.  The list of symptoms and health problems common in Pyroluria is long and varied and individuals with Pyroluria often present very differently from each other.  Additionally, some people have very few symptoms and may have symptoms that seem contradictory.  This is because each of us is so biologically complex and there are so many factors that can change how our bodies function.

Symptoms of Pyroluria are often worsened by stress (physical and emotional), and may begin after a stressful event.  In many cases the stresses around adolescence bring out Pyroluria and the person experiences an onset or dramatic worsening of symptoms in their teens or early adulthood.  Other people experience some symptoms throughout their lives, but the symptoms may change over time and still tend to worsen with stress.  Common symptoms include:

physical symptoms- pale skin (relative to family members), anemia, thin or ridged fingernails or white spots on finger nails, poor morning appetite, tendency to become vegetarian, may gain weight on hips and butt, fatigue, sensitivity to sunlight, burns easily in sun or does not tan, hypoglycemia, joint pain, problems with cartilage (especially in the knees), prone to side stitches and unexplained nausea, motion sickness, digestive problems,

emotional symptoms- anxiety and depression are most common or at the root of many of the psychological impacts of Pyroluria.  Other emotional symptoms include mood swings, rages, panic attacks, feelings of dissociation, poor dream recall (or occasionally tendency to have bad dreams), memory problems, tendency for addictive behavior, sensitivity to some stimuli such as bright light or loud noises, may have altered or strong sense of taste and/or smell, tendency to be a "night owl" (feel more alert in evening/night), suicidal thoughts,

Health conditions that are often associated with Pyroluria include: autism, ADHD, addiction/substance abuse, Bipolar Disorder, Schizophrenia, sensory processing problems, Obsessive Compulsive Disorder,

Pyroluria is tested for by a urine test to measure the level of pyrroles in the urine.  It is most accurate if no zinc or B6 supplements are taken with a week of the test, although there is increasing evidence that the test may not be very accurate anyway.  There are quite a few people who look like they have Pyroluria based on their symptoms, have low levels of pyrroles in their urine when tested, and yet respond very well to treatment as though they did have Pyroluria.  Some people suspect that pyrroles can degrade quickly in the urine sample.  It is also possible that there are other substances that can cause this presentation. 

Pyroluria is treated with supplementation of high doses of zinc and B6 (must be in it's P5P form) in accordance with the severity of the person's Pyroluria (some people produce more pyrroles than others).  I've heard that sometimes people with Pyroluria, especially if they have been untreated for a long time, may not absorb the nutrients well from oral supplements and may need injections at the beginning of treatment.  Many people also supplement arachidonic acid (an omega-6, found in Evening Primrose Oil and Borage Oil) and manganese.  In my opinion it is also important to reduce the sources of stress in a person's life as well as learning techniques for handling stress.  It is usually believed that Pyroluria is a life-long condition requiring life-long treatment.  People tend to experience significant improvement within 1-2 weeks of beginning supplementation, and it is often reported that people begin to relapse within several weeks if they stop taking the supplements.  Some people seem to need higher doses in the beginning (could be from reduced absorption at this point or due to "filling in a hole") but then may need to reduce the dose once progress reaches a plateau. 

Additional resources:

Integrative Psychiatry on Pyroluria

Nora Gedgaudas, of Primal Body Primal Mind, discussing Pyroluria

Pyroluria:  A Hidden Disorder (this article goes into much more depth)

Naturopathy Online has a nice little article about it here.

Dr Kaslow also has a good synopsis here.

Oxalate Levels of Grains and Starches

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