The voices that people with schizophrenia are hearing are probably their own inner thoughts

This is kind of breaking news — new news: A research scientist, with the aid of a powerful microphone, was able to record a patient with schizophrenia speaking to themselves in a sub-vocal voice. The patient was not aware that they were speaking at the time.

The research is very early, a first in its field perhaps, but the theory seems to suggest that the patient’s with schizophrenia symptoms may have some disconnect with the normal ability to identify internal thoughts and sub-vocal speech as being self generated and instead are interpreting the internal thoughts as coming from some external source of whatever type the person might think.

(Example of my interpretation of sub-vocal speech: the almost silent muttering under your breath that you don’t notice yourself doing, until suddenly you do notice that you’re talking to yourself, and then you stop because you don’t want anyone to notice. The brain of a someone with schizophrenia may no longer recognize the voices of self-talk, or those of voices in memories or in imagined conversations, as being internally self-generated and instead probably tend to make up some explanation for  whatever or whoever might be doing the talking that is being heard — hearing voices. Our internal chatter can get busy and sometimes pretty mean, it would be scary to not realize that it is just yourself. )

Read more, of the actual article:  [http://www.slate.com/articles/health_and_science/medical_examiner/2016/03/schizophrenia_and_subvocal_speech_why_schizophrenics_hear_the_voices_of.html]

This seems like very important news — patients with schizophrenia may be able to be gently reminded that those voices are just brain mumbles, and to try to ignore them.

People with schizophrenia are generally not associated with violence unless there is also a history of violent behavior, alcohol or drug abuse, or more persecutory fantasies. [citation missing, I don’t remember where I read that recently, but I posted it in a comment somewhere.]

Mental health symptoms sometimes may be due to underlying issues that could be easily fixed, rather than considering the patient as being ‘mentally ill’ for the rest of their life and likely being placed on medications that tend to have severe side effects. Effective health care would seek for any underlying causes that can be returned to a state of normal function with the simplest solutions possible, “Let food be thy medicine,” the first part of the quote by Hippocrates may be the most important part.

There are several different nutrient deficiencies that can cause symptoms similar to schizophrenia or may be involved in an underlying cause for the condition, this information was from an older post of mine but it was not grouped together:

Summary update written for something else, (clearly this post could use editing): The balance of cannabinoids is a problem in Schizophrenia. (2-AG ~ noneuphoric CBD is decreased in ratio to anandamide ~ euphoric THC compared to normal health, (66)) Use of CBD as a treatment has showed promise for schizophrenia, particularly during early stages of the condition. (67) The genetic difference that might make someone more susceptible to developing schizophrenia may involve a deficiency in Cannabinoid Receptor type 2. (68) (*Additional Note for anyone interested – several nutrient deficiencies can also cause symptoms similar to schizophrenia – and would need to be treated with diet or supplements – and all or some of them might be involved and need to be treated with diet or supplement changes in order for the underlying symptom causing deficiencies to be resolved.

The nutrient deficiencies may include zinc or an excess of copper in ratio to zinc level; the methyl donor B vitamins folate and vitamin B12 – so if a genetic problem existed in methylation than standard supplements of folic acid and unmethylated B12 might make it worse instead of better as the non-bioactive forms would be competing with whatever bioactive dietary folate and methylated B12 were being consumed (wrong puzzle piece blocking a spot for the right puzzle piece); hypothyroidism and elevated bromide is associated with schizophrenia so iodine may be low and goitrogens in excess; Vitamin D and/or an underlying infection with Toxoplasma gondii may be present, and a genetic difference in the Vitamin D Receptor or vitamin D metabolism may increase risk for infection with T gondii (catbox litter of a young cat is a risk factor for T gondii infection).

Soapbox moment for patient advocacy – the prognosis/quality of life for patients with schizophrenia was better a hundred years ago then it is now. Prescription medications are never going to be able to resolve one or several nutrient deficiencies or metabolic differences.

Regarding trends seen around the world in rate of schizophrenia, it has been dropping in South Korea and increasing in Japan. North Korea has the highest rate for the region: http://global-disease-burden.healthgrove.com/l/58241/Schizophrenia-in-South-Korea

Malnutrition in North Korea is more likely involved in the increased rate for the nation than cat ownership due to the many years of sanctions against the country. B12, folate, zinc and vitamin D deficiencies and excess copper may be involved in risk of developing schizophrenia like symptoms. Folate and calcium are considered to be potentially deficient for the typical Korean diet. Fortified milk products aren’t typically consumed so extra vitamin D from that source wouldn’t be available. Iodine is also a nutrient that may be deficient in the diet. http://adoptionnutrition.org/nutrition-by-country/korea/

And low iodine levels can increase risk for hypothyroidism which has been found to be more common as a comorbid condition with patients with schizophrenia. https://www.ncbi.nlm.nih.gov/pubmed/30350120

Bromine excess can compete with iodine and may increase risk of hypothyroid or schizophrenia symptoms. http://www.kumc.edu/school-of-medicine/integrative-medicine/health-topics/iodine-supplementation.html

Low thyroid levels have been associated with schizophrenia in early treatment of the disease and has been used in more recent care of patients by an alternative physician. The following link includes excerpts from many older research articles and one mentions kryptopyrroles being elevated in some patients so a genetic cause may be involved for some patients that would cause low zinc and low B6 levels (pyroluria). http://www.orthomolecular.org/library/jom/2001/articles/2001-v16n04-p205.shtml

Schizophrenia treatment and other psychiatric care in Russia does not seem to be an ideal to follow anywhere else – or there: http://www.sras.org/snezhnevsky_schizophrenia_soviet_psychiatry However Russians on average do own a lot of cats, especially in comparison to residents of South Korea: https://www.statista.com/chart/10267/which-countries-have-the-most-cat-owners/?utm_content=buffer35f5b&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer 

/Disclosure: This information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes./

Autism may be able to be prevented prenatally with individualized perinatal education and nutrition therapy

This got long and complicated and I need to buy a couple of the articles and work on this more but in the meantime, I’m sorry for suggesting the food supply might have something to do with the increased rate of autism or that the health insurance companies don’t want a clear diagnostic procedure etc. but without a lab test that says someone is sick they can save money on paying claims — however costs in the long run may end up being a lot more than they might have been with an earlier diagnosis and preventative treatment. I’m sure the health insurance companies and government and FDA love us all and that autism must be a complete mystery – but leaving something a complete mystery still leaves it a worry for expectant parents and grandparents throughout the pregnancy and even into the early childhood years. The symptoms aren’t usually diagnosed until age two or older. But earlier diagnosis might help prevent more severe loss of function. The condition can cause a sudden or more gradual loss of social skills and development progress.  

Autism can leave a child unable to take care of themselves independently for the rest of their lives. At a rate of 1 child in 45, [Nov. 2015, CDC, http://health.usnews.com/health-news/articles/2015/11/13/cdc-child-autism-rate-now-1-in-45-after-survey-method-changes], there were 3,932,181 births in the USA in 2013, so roughly that would suggest that 87,381 of those children will go on to develop some symptoms of autism or pre-primary developmental delay — and that possibly 87,381 parents will no longer be able to work at their normal jobs because they will be needed as full time caregivers for their child with autism, possibly for the rest of their lives. So if that rate held steady for the decade then in ten years there could be 1,747,620 children with autism and parents who may not be able to work at a normal job. When will it be enough children and parents to do something about?

I closed with the following paragraph but I’m going to paste it here at the beginning too, as the best of the good news: a lab test has been developed that consistently predicted which infants would later go on to develop autism. This helps clear up the mystery of whether autism is a condition that a toddler can suddenly “get” like an infection or have suddenly develop as an acute reaction to something or whether it develops prentally — it develops prenatally and can get worse — which suggests that it might not also have to get worse if appropriate interventions can be provided. Autoimmune disease frequently can flair up, go into remission, flair up again, and go back into remission. Autism appears to be related to autoimmune conditions of the brain so dietary and lifestyle changes might be able to help keep the overactive white blood cells more in ‘remission’ and less busy doing brain damaging things — that would be my hope at least.

A method has been developed using samples of umbilical cord blood to identify which infants are likely to develop autism later in childhood. The method checks fifteen “biomarkers,’ — (various lab values or other physical signs, I haven’t read the full article yet, need to buy it) — infants whose values were more elevated or reduced compared to normal in a certain pattern were found to be predictive of which infants went on to develop autism. [6 ] This is early research but it would help identify which infants were at risk for autistic changes in a year or two, but at birth instead of having to wait — and worry — for a year or two.

I have some good news and some bad news. It looks plausible that autism could be caused prenatally by a combination of low vitamin D (or possibly a vitamin D system that is blocked by pathogens), and low folate availability (possibly due to a genetic methylation defect, [4], defects that may make the supplemental form, folic acid, not as helpful prenatally and possibly even harmful because the folic acid may inhibit the activity of whatever folate is available, [29] ), and increased formaldehyde either from dietary sources like Nutrasweet or from smoking or living in small enclosed rooms with poor ventilation. Other toxins might also be involved that add to an increased risk for there to be production of autoimmune antibodies in the vitamin D deficient mother and fetus. Malfunction in the vitamin D receptor immune functions could lead to malfunctions in the dendritic cell’s ability to inhibit autoimmune overactivity in the immune system. Autoimmune antibodies might cause problems during fetal brain development or later in the child’s life.

Low vitamin D in infants has been associated with autism – but not for all siblings with low vitamin D — so other factors must be involved. And not taking a prenatal vitamin during the three months prior to pregnancy and the first month of pregnancy has been associated with more risk for having a child with autism and certain genetic defects in the methylation cycle that helps make the B vitamin folate more bioactive have been associated with autism risk [4] – but not every mother who doesn’t take prenatal vitamins during the months prior to becoming pregnant has a child with autism — so other factors must be involved.

Not much information is available about Nutrasweet but during digestion the methanol portion of the larger molecule is released which then is broken down into formaldehyde – which is a known cause of birth defects and a known neurotoxin.

Formaldehyde is produced when something is burned so it could be a concern for any people who are around cigarette smoke or inhale other types of smoke regularly. Formaldehyde can also collect in the air in small enclosed spaces, and increased warmth may also increase volatility of the gas so warmer areas or overheated apartments may allow for more accumulation of the gas in poorly ventilated rooms.

Formaldehyde is also found in prepackaged juice products, particularly in older packages, as formaldehyde is produced as the fruit or vegetable juice ages. Formaldehyde is also produced during digestion from the methanol portion of the alternative sweetener Nutrasweet. Studies on the potential risk of the formaldehyde content that might be available to adults from dietary Nutrasweet found that it was a less significant risk than the amount an adult might receive as a cigarette smoker or from environmental exposures. However an adult has a fully mature liver while a fetus does not. Babies and children also have less mature livers and may be more at risk of having chemicals accumulate to toxic levels because they are not being broken down and excreted quickly enough. (Folate, a B vitamin, is necessary to break down formaldehyde, more on that later.)

Formaldehyde can cross the placenta to the fetus where it accumulates to a larger concentration than within the mother’s bloodstream. The fetal liver tissue is less able to detoxify formaldehyde than the mother’s.

Industrial exposure to formaldehyde is associated with an increased risk of the presence of cancer causing human alpha fetoprotein antigens. Occupational exposure to formaldehyde has also been associated with increased levels of alpha fetoprotein in adult male and female subjects. The study subjects with occupational exposure to formaldehyde were also found to have significantly reduced levels of Total Protein, Albumin, and White blood cell count. Subjects with workplace exposure to formaldehyde reported allergic type symptoms including: “sneezing/airways-related symptoms, itching and watery eyes.” [3] Formaldehyde exposure may also be a cause of systemic allergic contact dermatitis, [15, 16] possibly even on the eyelids. [13] A diet designed to avoid formaldehyde intake may be helpful for alleviating the eczema like rash. [14]

Levels of alpha fetoprotein are normally only elevated in pregnant women and the expected infant.

Levels of maternal serum alpha fetoprotein are already being checked regularly as a prenatal screening test because low levels are associated with having a baby with the genetic condition Down’s Syndrome. Levels of maternal serum alpha fetoprotein have been found to be more elevated for the mothers of children with autism than in mothers whose child did not have autism. [1] Alpha fetoprotein (AFP) has immunomodulatory effects and a recombinant human alpha fetoprotein (rhAFP) version has been found to help alleviate autoimmune symptoms in clinical trials that used mice with “experimental autoimmune encephalomyelitis (EAE), the animal model used for the study of MS.” [2] Alpha fetoprotein is normally produced by the fetus and it does cross into the fetal brain where it seems to be involved with controlling estrogen and helping baby girls to be more feminine and less masculine.

/Speculation: So if alpha fetoprotein antigens are involved in causing autism maybe boys are more at risk for the condition because the estrogen connection somehow is protecting baby girls from developing the antigens. However if the basic problem is a malfunctioning dendritic cell system which is making it more difficult for the mother’s body and fetus’ body to accept the presence of each other’s foreign DNA then other proteins might also have antigen/autoimmune antibodies develop. Male infants may simply be more susceptible to autism because their Y chromosome is more foreign to the mother’s body than a female infant’s X chromosomes. / — Someone already figured this part out and explains it better than me, in a Medical Hypotheses journal – if you have the money for the journal article ($31.50, now added to my shopping list). An excerpt from the Abstract: “Prenatal/maternal factors linked to increased autism risk include valproic acid, thalidomide, alcohol, rubella, cytomegalovirus, depression, schizophrenia, obsessive-compulsive disorder, autoimmune disease, stress, allergic reaction, and hypothyroidism. It will be shown how each of these risk factors may initiate expression of genes which are sensitive to retinoic acid and/or estradiol – whether by direct promotion or by reducing production of alpha-fetoprotein. It is thus hypothesized here that autism is not a genetic disorder, but is rather an epigenetic disruption in brain development caused by gestational exposure to chemicals and/or conditions which either inhibit alpha-fetoprotein production or directly promote retinoic acid-sensitive or estradiol-sensitive gene expression. This causation model leads to potential chemical explanations for autistic brain morphology, the distinct symptomology of Asperger’s syndrome, and the differences between high-functioning and low-functioning autism with regard to mental retardation, physical malformation, and sex ratio.” – CR King [29]

So speculatively,

  • if formaldehyde can make it more likely for someone to make alpha fetoprotein antigens,
  • and maternal serum alpha fetoprotein levels are more elevated in the mother’s of children with autism,
  • and low vitamin D is more common in babies who have autism,
  • and vitamin D helps the dendritic cells of the mother and infant accept each other’s foreign DNA instead of making autoimmune antibodies against each other’s foreign proteins,
  • then low vitamin D might leave the dendritic cells unable to prevent autoimmune antibodies from developing
  • which then may cause changes in the developing fetal brain and may leave the child with autoimmune antibodies that may continue to cause changes in the child’s developing brain later in life.
  • The formaldehyde could be from Nutrasweet and bottled juice products and/or from cigarette smoke or other environmental sources or the combined total of all of the sources. The timing of the introduction of aspartame/Nutrasweet to the U.S. food supply in 1981 and the increase in rate of children with autism is very closely correlated. [5] Nutrasweet and Neotame were both inventions of the Monsanto Company and limited research about them is available. Neotame was invented as the patent for Nutrasweet was expiring and Monsanto was able to get FDA approval for it by 2002. The patent for Neotame was sold to a private equity firm, the J.W. Childs Equity Partners II. L.P.. [https://theredpillguide.wordpress.com/2012/02/23/the-red-pill-guide-neotame/]

So in summary the good news is autism may be preventable – but the bad news is that it will be difficult to prove and preventative education and treatment will likely need to be individualized as so many factors are involved.

A summary of the factors that may interact during the prenatal and/or perinatal  (three months prior to conception) time period in a way that may lead to the development of autism within the fetal brain.

Possible Vitamin D Issues – it might not just be a lack of vitamin D or sunshine:

  • Simple vitamin D deficiency
  • An underlying genetic defect in the Vitamin D Binding Protein causes a tendency to become vitamin D deficient more easily than normal. [10, 11, 12] (Might a simple protein deficiency then also add a risk to a simple deficiency of all important proteins?)
  • An underlying infection is present with a pathogen that is suppressing the vitamin D receptor system.

Possible Folate Issues:

  • Simple folate/folic acid deficiency/lack of prenatal vitamin during the perinatal time period. [4]
  • Genetic defect in mother affecting the methylation cycle makes her more susceptible for folate deficiency. [4]
  • Genetic defect in the fetus affecting the methylation cycle makes it more at risk for autism. [4]
  • A methylated form of the vitamin may be more effective for reducing risk of developing autism. The natural food form, folate, is more bioactive than the supplemental form, folic acid, that is used in prenatal vitamins. [29]

Formaldehyde might be accumulating from several sources [3, 5]:

  • Aseptically packaged juices
  • Nutrasweet
  • Neotame
  • Smoking
  • Badly ventilated air.
  • Workplace exposure

Other, other factors that may be involved in development of autism may include a variety of chemicals known to be toxic for brain development and which may be common in our modern environment.  From the Abstract of a review article by Dr. Philippe Grandjean, MD and Philip J. Landrigan, MD, Neurobehavioural effects of developmental toxicity., (The Lancet Neurology, 2014):  “In 2006, we did a systematic review and identified five industrial chemicals as developmental neurotoxicants: lead, methylmercury, polychlorinated biphenyls, arsenic, and toluene. Since 2006, epidemiological studies have documented six additional developmental neurotoxicants—manganese, fluoride, chlorpyrifos, dichlorodiphenyltrichloroethane, tetrachloroethylene, and the polybrominated diphenyl ethers. We postulate that even more neurotoxicants remain undiscovered. To control the pandemic of developmental neurotoxicity, we propose a global prevention strategy.” [30]

And other factors associated with autism that were mentioned in the other hypothesis about autism and folic acid included: “valproic acid, thalidomide, alcohol, rubella, cytomegalovirus, depression, schizophrenia, obsessive-compulsive disorder, autoimmune disease, stress, allergic reaction, and hypothyroidism.”  – CR King [29]

  1. valproic acid, a medication commonly used to prevent seizures in epilepsy, may also be prescribed for bipolar disorder or to prevent migraine headaches. (Valporate (VPA), sodium valproate, and divalproex sodium, Depakote). It has been known to cause serious abnormalities in babies when used by pregnant women and is no longer typically prescribed to women of childbearing years. [Wikipedia]
  2. thalidomide,a medication that was prescribed to pregnant women for preventing nausea in the 1960s but it was discovered to cause serious birth defects. It is still used for the treatment of leprosy and still has been known to cause birth defects in the babies of women with leprosy who become pregnant. [http://toxsci.oxfordjournals.org/content/122/1/1.full]
  3. alcohol, – alcohol use by the mother during pregnancy or by the father during the days prior to conception can be a cause of Fetal Alcohol Syndrome in the infant. A zinc deficiency in the pregnant woman may increase the risk of the expected infant developing FAS. [search term alcohol FAS zinc deficiency]
  4. rubella, – also known as German measles, it is the R part of the MMR vaccine. It is rare in the U.S. now with less than ten cases per year but can cause defects in an expected infant if a pregnant woman gets sick with the infection prior to 20 weeks gestation. [http://www.whattoexpect.com/pregnancy/pregnancy-health/complications/rubella.aspx]
  5. cytomegalovirus, a viral disease that may affect vitamin D levels: “However, when outliers were removed, the association was not apparent. The effect of outliers could not be assessed when vitamin D was dichotomized because no patients with CMV antibodies had sufficient vitamin D levels after outliers were dropped.” [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134182/]
  6. depression, – can be a symptom of hypothyroidism and has been associated with vitamin D deficiency [webmd.com/depression/news/20120627/vitamin-d-deficiency-linked-to-depression] and with folate deficiency. And the methylated form was given as a supplemental treatment, L-Methylfolate, rather than the unmethylated form, folic acid, which is the form used in prenatal vitamins.   [psychologytoday.com/blog/the-integrationist/201310/depression-wont-go-away-folate-could-be-the-answer] Depressive disorders have been associated with impaired methylation: [http://www.ncbi.nlm.nih.gov/pubmed/16194269] And with zinc deficiency: [https://www.psychologytoday.com/blog/evolutionary-psychiatry/201309/zinc-antidepressant]
  7. schizophrenia, vitamin D deficiency is more common in people diagnosed with schizophrenia. [http://psychcentral.com/news/2014/07/23/vitamin-d-deficiency-common-in-schizophrenia/72813.html] And folate and B12 have both been found to help treat schizophrenia symptoms (or help treat those patient’s whose symptoms are actually due to an underlying deficiency of folate or B12 which may cause symptoms that resemble schizophrenia and providing the nutrients simply is helping the brain to function normally again.) [http://www.naturalnews.com/039453_vitamin_B12_folate_schizophrenia.html] And a zinc deficiency/copper excess is more common in schizophrenia: [http://www.academia.edu/1096257/The_Role_of_Zinc_Supplementation_in_the_Treatment_of_Schizophrenia] And a zinc deficiency prenatally may be involved in the causing schizophrenia later in life: [http://www.ncbi.nlm.nih.gov/pubmed/1491625] [http://www.bmj.com/rapid-response/2011/10/30/does-zinc-deficiency-early-foetal-life-cause-schizophrenia]
  8. obsessive-compulsive disorder, – can be early symptoms of a B12 deficiency. [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3271502/] Has been associated with folate deficiency, elevated homocysteine levels and impaired methylation function: [http://www.ncbi.nlm.nih.gov/pubmed/16194269]
  9. autoimmune disease, – associated with vitamin D deficiency and malfunction of the dendritic cells ability to promote self tolerance of the immune system. The dry cleaning chemical and degreaser tetrachloroethylene has been shown to cause autoimmune disease in lab animal studies on toxicity: [http://www.atsdr.cdc.gov/sites/lejeune/tce_pce.html]
  10. stress, – increases cortisol and inflammatory stress chemicals, a lack of antioxidant nutrients may make it more difficult for the body to recover from the stress response. [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1876613/] And may use up stores of folate and cause elevated levels of homocysteine. [http://www.nejm.org/doi/full/10.1056/NEJMc066569] Elevated levels of cortisol during pregnancy has been shown to cause reduced growth rate in the babies in animal studies. [https://en.wikipedia.org/wiki/Cortisol]
  11. allergic reaction, and the vitamin D receptor and the Dendritic cells are what control the immune system’s allergic reaction. Excerpt: “1α,25-dihydroxyvitamin D(3) (calcitriol), the biologically active form of vitamin D, is an immunomodulatory hormone, e.g. it inhibits IgE synthesis in B cells. As its clinical application is limited by hypercalcemia, synthetic vitamin D receptor (VDR) agonists that mediate immunomodulatory activities without adverse hypercalcemic effects are of great interest.“- [http://www.ncbi.nlm.nih.gov/pubmed/21121929]
  12. hypothyroidism. – may be associated with iodine deficiency which prenatally can cause mental retardation and thyroid defects in the expected infant. Hypothyroidism in female workers has been associated with the flame retardant, polybrominated diphenyl ethers,  [http://www.ncbi.nlm.nih.gov/pubmed/26606679], and the insecticide chlorpyrifos,  [http://www.iss.it/binary/inte/cont/CPF_ENG.pdf], and the pesticide known as DDT dichlorodiphenyltrichloroethane also  [https://preventdisease.com/news/10/022510_pesticide_exposure_underactive_thyroid.shtml], [http://www.ncbi.nlm.nih.gov/pubmed/24064777], and polychlorinated biphenyls [https://www.researchgate.net/publication/26873383_Hypothyroidism_Induced_by_Polychlorinated_Biphenyls_and_Up-Regulation_of_Transthyretinand fluoride are also associated with risk of hypothyroidism.

To help prevent autism from occurring prenatally we may need to work together to show that a combination of nutritional deficiencies or metabolic defects and environmental toxins may be causing autism to develop in infants prenatally. And we may need to work together as a group of concerned individuals rather than waiting for the government or a medical corporation to look further into a problem that might leave them at some risk of legal repercussions. Historically there have been several examples of government and corporate interests blocking the lawsuits of factory workers or townspeople whose health was damaged by industrial chemicals. The lawyers were able to show expert testimony demonstrating that the supposedly ‘harmful’ toxin really had some beneficial use and was really a safe and helpful ‘treatment.’ If we could make this about helping the babies stay healthier and more on track developmentally then insurance companies and governments would probably save a lot of money in the long run actually.

Pretending things are a mystery makes it harder to work on solving the underlying problems and preventing more cases from developing into future years or future decades. Thalidomide was a mystery that got solved. Only a few pregnant women with leprosy have to worry about whether their baby might be born with thalidomide birth defects. Before the cause was known every pregnant woman of that generation probably was scared. Now we do have a variety of information about autism and putting together the puzzle is a little complicated but the good news is that it is not a complete mystery and may be preventable with individualized health guidance that begins at least one to three months prior to conception – the prenatal vitamin research suggests that the pre-conception diet is important.

Fetal Alcohol Syndrome has been shown to be related to the father’s alcohol intake around the time of conception as well as the mother’s alcohol intake during the pregnancy so the father’s diet on the days before conception may also be involved in autism development — zinc is very important for male fertility. A longevity type study could include information about both the mother and the father’s health prior to conception and then follow the pregnancy and infancy and hopefully the preventative diet and lifestyle changes would have prevented autism from occurring. 

Part of the bad news that didn’t make it into the earlier discussion of the digestion of menthol and formaldehyde is that humans have a genetic defect that makes menthol extremely more toxic to us than to all other animals — so lab research would demonstrate that menthol isn’t really that bad after all –(to lab animals, that is, but let’s keep that part a secret between corporate research scientist’s and their consciences). So in a global corporate NAFTA/TPP type world where a corporation can sue nations over lost profits, feasibly corporate research scientists and lawyers could force nations to either accept the products made with aspartame and Neotame whether it is a risk to their citizen’s health or not, or else pay the corporation for their estimated lost profits.

Aspartame and Neotame are so much sweeter than sugar that they are simply cheaper to use in food products than sugar, and since its introduction in 2002 Neotame has never even had to be listed with the ingredients, so sweet, delicious, calorie free and guilt free, no alternative sweetener was used in that product according to the label. Aspartame is the number one food additive for consumer complaints to the FDA about adverse side effects. With Neotame not ever being listed on the food label consumers have no idea if they consumed it or not even if they do have an adverse effect and we have no idea if the FDA would have received consumer complaints about the food additive because it was never required to be added to the ingredient label. People who avoid aspartame due to it causing migraines can’t look for Neotame on the ingredient list.

Avoiding all processed foods and all restaurant meals seems like a lot to ask of pregnant women but that might be necessary in order to avoid Neotame. And with Neotame as a possible source of formaldehyde for the developing fetus then as a prenatal nutrition counselor that would be the most cautious advice given the research that is already known about menthol and formaldehyde’s risks to fetal development. Avoiding all toxins and reducing stress and risk of infection would be the ideal goal for all pregnant women.

Working towards removing aspartame/Nutrasweet and Neotame from the food supply may be an impossible goal given the deep pockets of corporations but trying to get Neotame added to the ingredient list seems like a necessary compromise or first step if we are really going to be able to help prenatal and perinatal women avoid all sources of formaldehyde in the hopes of helping prevent autism from developing in the child later in life.

*This got long and complicated and there’s more: The other, other factors would include undiagnosed cases of hypothyroidism and undiagnosed iodine deficiency and BPA/pthalate exposure. Each individual mother/child with autism probably have a slightly different combination of genetic and nutritional susceptibilities and negative load of various environmental toxins and maybe even a sensitivity to the supplemental folic acid (supposedly helping prevent spina bifida but may be adding to autism risk for the babies of moms who have certain genetic defects in the methylation cycle).

So this is a preliminary draft of a preventative health education strategy for trying to prevent autism. A longevity study that started with women at least three months prior to conception and followed them and their children for years would be able to try a multi-factored prevention plan and wait and see if fewer of the children developed autism than compared to the rate of children developing autism in the average population. [rate at 1 in 45 births, Nov. 2015, CDC, http://health.usnews.com/health-news/articles/2015/11/13/cdc-child-autism-rate-now-1-in-45-after-survey-method-changes] Imprecise diagnostic criteria makes it easier for insurance companies to deny coverage.

A method has been developed using samples of umbilical cord blood to identify which infants are likely to develop autism later in childhood. The method checks fifteen “biomarkers,’ — various lab values — infants whose values were more elevated or reduced compared to normal in a certain pattern were found to be predictive of which infants went on to develop autism. [6 ] This is early research but it would help identify which infants were at risk for autistic changes in a year or two, but at birth instead of having to wait — and worry — for a year or two.

/Disclosure: This information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes./

Bibliography:

  1. Abdallah, Morsi W.; Grove, Jakob; Hougaard, David M.; Nørgaard-Pedersen, Bent; Ibrahimov, Fuad; Mortensen, Erik L. Autism Spectrum Disorders and Maternal Serum Alpha-Fetoprotein Levels during Pregnancy, Can J Psychiatry. 2011;56(12):727-734.[https://www.questia.com/library/journal/1P3-2562877671/autism-spectrum-disorders-and-maternal-serum-alpha-fetoprotein]
  2. Irony-Tur-Sinai M1, Grigoriadis N, Lourbopoulos A, Pinto-Maaravi F, Abramsky O, Brenner T. Amelioration of autoimmune neuroinflammation by recombinant human alpha-fetoprotein., Exp Neurol. 2006 Mar;198(1):136-44.[http://www.ncbi.nlm.nih.gov/pubmed/16423348]
  3. Euphoria C. Akwiwu, Chinyere A.O. Usoro, Josephine O. Akpotuzor, Maisie H. Etukudo, Occupational Health and the Impact of Long-Term Formaldehyde Exposure on Health Professionals in Calabar, Nigeria., Journal of Natural Sciences Research,  Vol 5, No 22 (2015), [http://iiste.org/Journals/index.php/JNSR/article/view/27141]
  4. Schmidt RJ1, Hansen RL, Hartiala J, Allayee H, Schmidt LC, Tancredi DJ, Tassone F, Hertz-Picciotto I., Prenatal vitamins, one-carbon metabolism gene variants, and risk for autism., Epidemiology. 2011 Jul;22(4):476-85, [http://www.ncbi.nlm.nih.gov/pubmed/21610500]
  5. Ralph G. Walton, Woodrow C. Monte, Dietary methanol and autism., Medical Hypotheses, Vol 85, Issue 4, Oct 2015, pp 441–446, [http://www.sciencedirect.com/science/article/pii/S0306987715002443]
  6. Newborn screening for autism: in search of candidate biomarkers. [http://www.ncbi.nlm.nih.gov/pubmed/23547820 ]
  7. Direct and indirect cellular effects of aspartame on the brain. [http://www.ncbi.nlm.nih.gov/pubmed/17684524 ]
  8. In utero exposure to toxic air pollutants and risk of childhood autism. /formaldehyde, lead, others/ [http://www.ncbi.nlm.nih.gov/pubmed/25051312 ]
  9. Aspartame: a safety evaluation based on current use levels, regulations, & toxicological & epidemiological studies. [http://www.ncbi.nlm.nih.gov/pubmed/17828671 ]
  10. Intracellular Vitamin D Binding Proteins: Novel Facilitators of Vitamin D-Directed Transactivation: MolEnd: 14, 9 [ https://shar.es/1GqZkH ]
  11. Vit DBP Influ Total Circ Levels of 1,25-D3 but Does Not Directly Modulate Bioactive Levels of the Hormone in Vivo [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2453093/ … ]
  12. Gene for Vitamin D Binding Protein (DBP) is similar to those for human albumin (hALB) and alpha feto protein (hAFP) [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC424397/ …]
  13. Systemic contact dermatitis of the eyelids caused by formaldehyde derived from aspartame?  [http://www.ncbi.nlm.nih.gov/pubmed/14996049 ]
  14. Systemic contact dermatitis in children: how an avoidance diet can make a difference.  [http://www.ncbi.nlm.nih.gov/pubmed/20807367 ]
  15. Systemic allergic dermatitis presumably caused by formaldehyde derived from aspartame. /no abstract avail./ [http://www.ncbi.nlm.nih.gov/pubmed/23039008]
  16. Systemic Allergic Contact Dermatitis After Formaldehyde-Containing Influenza Vaccination.  [http://www.ncbi.nlm.nih.gov/pubmed/25876644 ]
  17. Formaldehyde adduct to human serum albumin with reference to aspartame intake. [http://www.ncbi.nlm.nih.gov/pubmed/21783841 ]
  18. Methanol: a chemical Trojan horse as the root of the inscrutable U.[http://www.ncbi.nlm.nih.gov/pubmed/19896282 ]
  19. A receptor for formaldehyde-treated serum albumin on human placental brush-border membrane. [http://www.ncbi.nlm.nih.gov/pubmed/2847791 ]
  20. Distribution of radioactivity from 14C-formaldehyde in pregnant mice and their fetuses. [http://www.ncbi.nlm.nih.gov/pubmed/8435351 ]
  21. Histomorphological & ultrastructural changes of placenta in mice exposed to formaldehyde. /small baby, big placenta/ [http://www.ncbi.nlm.nih.gov/pubmed/22778113 ]
  22. Formaldehyde Crosses the Human Placenta and Affects Human Trophoblast Differentiation and Hormonal Functions. /Nac/ [http://www.ncbi.nlm.nih.gov/pubmed/26186596 ]
  23. Embryo toxicity and teratogenicity of formaldehyde. [http://www.ncbi.nlm.nih.gov/pubmed/11572272 ]
  24. Effects of heavy metals on alpha-fetoprotein in maternal sera and amniotic fluid of pregnant mice. [ http://www.ncbi.nlm.nih.gov/pubmed/1699299]
  25. The alpha-fetoprotein third domain receptor binding fragment: …scavenger & assoc receptor targets. [ http://www.ncbi.nlm.nih.gov/pubmed/25766080 ]
  26. Route of antigen delivery impacts immunostim activity of dendritic cell-based vaccines for hepatocellular carcinoma. [ http://www.ncbi.nlm.nih.gov/pubmed/26199728 ]
  27. Nonsecreted cytoplasmic alpha-fetoprotein: a newly discovered role in intracellular signaling & regulation. /cancer [ http://www.ncbi.nlm.nih.gov/pubmed/26162540 ]
  28. Carcinoembryonic antigen, alpha-fetoprotein, & prostate-specific antigen…exposed to phenol, formaldehyde, urea,… [ http://www.ncbi.nlm.nih.gov/pubmed/16966304 ]
  29. King CR, A novel embryological theory of autism causation involving endogenous biochemicals capable of initiating cellular gene transcription: a possible link between twelve autism risk factors and the autism ‘epidemic’.,  Med Hypotheses. 2011 May;76(5):653-60 [http://www.ncbi.nlm.nih.gov/pubmed/21388746]
  30. Dr. Philippe Grandjean, MD and Philip J. Landrigan, MD, Neurobehavioural effects of developmental toxicity., The Lancet Neurology, Volume 13, No. 3, p330–338, March 2014,   [http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(13)70278-3/abstract]
  31. Physiology of alpha-fetoprotein as a biomarker for perinatal distress: relevance to adverse pregnancy outcome. [http://www.ncbi.nlm.nih.gov/pubmed/17720945 ]
  32. Maternal serum transformed alpha-fetoprotein levels in women with intrauterine growth retardation. [ http://www.ncbi.nlm.nih.gov/pubmed/17361083 ]
  33. Dyslipidemia in pregnancy may contribute to increased risk of neural tube defects -a pilot study, north Indian pop.[ http://www.ncbi.nlm.nih.gov/pubmed/23105824 ]
  34. Comparison of proteins in CSF of lateral and IVth ventricles during early development of fetal sheep. – PubMed NCBI [http://www.ncbi.nlm.nih.gov/pubmed/6199091 ]

Elevated parathyroid hormone (PTH) and 1-25-D, calcium deficiency and calciphylaxis

I’m feeling so much better after only two days of calcium supplements that I feel like throwing a party. Fatigue is tiring. Replenishing supplies of a trace nutrient deficiency can help resolve symptoms so quickly that it feels like a miracle. I’ve experienced rapid resolution of symptoms in the past when I had a problem with low B1 intake [2] that was due to a low intake of everything – I had an anorexic appetite at the time which I later found may have been due to an underlying zinc deficiency.

The anorexic appetite symptom resolved when I added zinc and B6 supplements after reading about pyroluria. Pyroluria is not yet treated or accepted by most main stream health practitioners but it is believed to be due to a genetic defect affecting an enzyme that helps break down old hemoglobin for reuse and recycling. Molecules of B6 and zinc are involved in the process and in normal health would be recycled but if the person has the genetic modification than the B6 and zinc is released in urine rather than being retained for reuse. [1]

Calciphylaxis is a symptom that is not well understood but is associated with severe hyperparathyroidism. It is a rare symptom in the general population but is seen more frequently in people with end stage renal disease. When the kidneys are no longer able to make normal amounts of 1, 25 dihydroxy D the plasma calcium levels can drop. And to try to maintain normal calcium levels the body responds by having the parathyroid glands increase production of parathyroid hormone which in normal health would tell the kidneys to activate more 1, 25 dihydroxy D which would then tell the intestines to absorb more calcium and would tell the bones to release more calcium from storage. [3] But in end stage renal disease there aren’t functional kidneys and the elevated levels of parathyroid hormone can cause other symptoms like irregular or rapid heart rate or in severe cases calciphylaxis may occur.

Calciphylaxis “is a poorly understood and highly morbid syndrome of vascular calcification and skin necrosis.” [4] The word calciphylaxis may refer to the syndrome or to the patches of necrotic (decaying) tissue which may occur internally on the surface of bones or externally in patches on the surface of the skin. The decaying areas occur more commonly on the lower legs. The areas can first appear as reddish or purplish bruised areas that may feel like they have small hardened nodules under the skin. The skin surface may be itchy and eventually may break down to be an open wound that doesn’t heal easily. There is a risk of skin infections developing in the open wound which can become severe enough to cause sepsis and death as the patches of decaying skin or bone areas do not heal well.

Calciphylaxis is more of a risk with end stage renal disease but it has also been found in people who had normal vitamin D levels and normal kidney health. And “high dose vitamin D administration is capable of inducing STC (soft tissue calcification) and calciphylaxis in murine models. [56, 57] In an attempt to reestablish normal calcium-phosphate homeostasis, ESRD patients receive vitamin D analogs that could theoretically increase their risk of calciphylaxis if hyperphosphatemia and hypercalcemia ensued. [58, 59]” [3]

“Experimental sensitizing events and agents included nephrectomy and exposure to parathyroid hormone (PTH) and vitamin D. Substances used as challengers included egg albumin and metallic salts. Calciphylaxis was the end result.4  – from a 1962 study, abstract is free. [4.5]

Eczema is something I’ve had to cope with since infancy along with severe congestion problems. The images of calciphylaxis do not look quite like the itchy patches that I’ve been dealing with for a few months but they resemble the images of calciphylaxis more than they look like the patches of eczema that I’ve had off and on since infancy.

The fun thing about autoimmune disease is all the nifty weird symptoms that you get to experience – and which are so rare that many physicians don’t want to see you or the symptoms in their office –  because those unusual symptoms must be covered by some other specialist’s field. This quote said it well:  Calciphylaxis “is a poorly understood and highly morbid syndrome”. [4]  Maybe I wouldn’t want that syndrome to be my professional responsibility either, and maybe it is just too bad for me that it might be my personal responsibility whether I like it or not. However maybe I’m lucky that my professional and personal experiences have left me more informed about odd symptoms than other health professionals, and therefore I may possibly be better equipped to cope with the odd symptoms.

Thankfully just two days of calcium supplements (while continuing to avoid excess vitamin D and sunshine) have left me feeling less itchy and my open wound areas are beginning to form scabs instead of remaining open wounds with seeping plasma.

In normal physiology the activated hormone form, 1, 25 dihydroxy D, is typically found in elevated amounts only in areas of rapid growth or membrane breakdown, such as in scab formation by white blood cells, [6], and within the placenta during pregnancy. [5] – Maybe elevated 1, 25 dihydroxy D can also be an underlying problem causing calciphylaxis rather than it being due only to deficiency of the inactive vitamin 25-D or the active hormone 1, 25-D.

Yes, my vitamin 25-D level was low at 10.9 ng/mL and anything below 20-30 is considered deficient and I was recommended by my endocrinologist to take vitamin D and calcium. However my hormone 1, 25-D level was 55 pg/mL which is considered within the normal range by mainstream medicine (range: 18-72 pg/mL). Specialists in vitamin D/hormone D metabolism would consider levels of 1, 25-D above 42 pg/mL to be elevated enough to be an osteoporosis risk because above that level the bone cells start releasing calcium, phosphorus, and magnesium into the blood supply instead of absorbing the minerals from circulating plasma and storing them for increased bone strength or for later use. [7]

Calcium and magnesium are so important as electrically active ions that the body has a variety of ways to maintain the blood levels of the two minerals within a narrow range. Blood tests for calcium and magnesium levels may be normal even though there is inadequate dietary intake because the bones can act like a savings account at the bank. In normal health if the blood plasma dips a little low for calcium or magnesium, more minerals are released from the bone, and if levels are getting too elevated than more would be excreted by the kidneys, less would be absorbed by the intestines, and more would be absorbed into the bones for long term storage.

However if 1, 25-D levels are elevated above 42 pg/mL than even if calcium levels were elevated in the blood the abnormally elevated 1, 25-D level would still be telling the bones to release more calcium and for the intestines to absorb more calcium which would lead to way too much calcium for the kidneys to be able to excrete during good health let alone during renal disease (elevated blood calcium would normally signal the body to make more of the enzyme that de-activates 1, 25-D but some microbial pathogens seem to bypass our immune system by disabling our body’s ability to make that enzyme). Adequate magnesium is necessary for the kidneys to be able to excrete calcium and elevated 1, 25-D causes the intestines to preferentially absorb calcium rather than magnesium.

And it turns out that eczema is an autoimmune disease so I may have been trying to figure out how to feel healthier since I was a baby. [8]

My mother gave up trying to spoon feed me. She said I would spit food into my hand, look at it, then put it back into my mouth before swallowing. She put cookie sheets around my highchair to block the mess (and possibly the view) and left me to feed myself from a fairly early age. I still don’t like to be fed by others, whether it’s just a taste of something on a spoon, or whether it is a dietary supplement that might cause my underlying autoimmune condition to worsen.

I’m feeling less itchy and the open wound areas are beginning to heal. The tachycardia problem is better, (having a rapid heart rate with little exercise), and an internal jittery feeling is less. The problem with trying to medicate a nutrient deficiency with psychiatric drugs is that the psychiatric drug can’t take the place of a nutrient in metabolic pathways. For years now physicians, family members and friends have been encouraging me to just take the psychiatric medication as prescribed and stop complaining about psychosomatic symptoms and imaginary problems. But the psychiatric medications that were offered all had bad side effects and while some helped slow down whirling thoughts they didn’t make the thoughts less sad or negative and they didn’t take away the internal feeling of tension.

I felt like a coiled spring internally, very jittery all the time and unable to concentrate as well as normal. I knew something was wrong and I knew feeling like a coiled spring all the time wasn’t an imaginary delusion and the feeling didn’t go away with the three different anti-psychotic medications that physicians or psychiatrists had me try.

We can’t afford ineffective health care as individuals or as a global community. Harsh medications that cause side effects in humans are probably also causing side effects in the health of the environment once the chemicals become waste products. Expensive pharmaceuticals that cause side effects in patients without addressing the person’s underlying condition are primarily helping the pharmaceutical company and may be causing the person’s condition to worsen over the long term.

Low protein intake may be involved as hypoalbuminemia is a risk factor for calciphylaxis. [9 -includes images of calciphylaxis wounds.] I don’t know for sure that my weird skin patches are early stage calciphylaxis wounds but I hadn’t been eating much protein in the weeks before my bruise like symptoms became more like open painful sores and I have probably had a low calcium intake ever since I started limiting my use of dairy products. I did take calcium supplements in the past but my chronic muscle cramps became a problem and the calcium seemed to make it worse. More recently not eating much for a couple weeks would have further reduced my intake of calcium from the sources such as sesame seeds and tree nuts that I normally do eat. Just two days of calcium supplements have helped me feel calm internally instead of jittery (I’m using about 500 mg spread out through the day in low doses). I’m also eating a more adequate amount of protein and other foods and the odd skin patches have less of a burning itchy painful feeling and the areas are starting to heal rather than remain open seeping wounds.

Twenty three and a half to fifty million Americans may have one or more types of autoimmune diseases. [10] So I don’t think that I am the only one who has been regularly told that her symptoms must all be imaginary and to go see a talk therapist or to go get stronger and stronger psychiatric medications. We can’t afford ineffective health care because it doesn’t help the patient and the medications may be bad for the environment once they become waste products. Calcium is a natural mineral that is not harmful to the environment and it is inexpensive.

6/15/15 lab values:

  • Parathyroid hormone level – PTH Intact – 154.1 pg/mL — normal range: [15.0-75.0]
  • Calcium – 8.8 mg/dL — normal range: [8.4-10.2]
  • Phosphorus was not ordered but would probably be good to check.
  • Vitamin D, 25 – 10.9 ng/mL — normal is considered: [30.0-100.0]
  • Vitamin D 1, 25 – 55 pg/mL — normal is considered: [18-72]

I did schedule an appointment with a physician but it will be a few weeks and the tachycardia was not pleasant, the internal coiled spring feeling made it hard to concentrate and hard to not over react to outside events, and the open seeping sores were painful.

I don’t see why I should not try to take care of myself rather than having to follow the orders/recommendations of physicians or psychiatrists when they are working from the premise that “we don’t know what is causing your symptoms or how to cure them but we would really like you to take these harsh medications anyway because we guess that they might reduce some of your symptoms – and please just ignore the negative side effects that the medication is actually adding to your problems because we guess that the medication might help reduce some of the symptoms that you originally came to see us about.” That is an example of circular logic based on guesses and I’m not buying it anymore now than I did when I was sitting in a highchair covered with eczema, milk based formula, and baby food.

Medications can be life saving and certainly are a modern miracle but nutrients will always be our body’s building blocks. Providing medicines to reduce symptoms of nutrient deficiency will only prolong the time the body is left without adequate nutrients and some deficiencies can cause long term damage that is not reversible once the nutrient is added back to the diet. A long term deficiency of Vitamin B12 can cause irreversible nerve damage, [11], and it turns out that calcium or vitamin D deficiency can cause osteoporosis if the deficiency is chronic enough to lead to secondary hyperparathyroidism.

/Disclosure: This information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes./

Bibliography:

  1. Pyroluria: anxiety and deficiency of B6 and zinc
  2. Thiamin: people with anorexia or alcoholism are more at risk for vitamin B1 deficiency
  3. Julia R Nunley, MD, “Calciphylaxis,” Medscape, July 21, 2014, [4-Overview,  4.5-Pathophysiology]
  4. Liu NQ et al., “Vitamin D and the regulation of placental inflammation.” J Immunol. 2011 May 15;186(10):5968-74. doi: 10.4049/jimmunol.1003332. Epub 2011 Apr 11, [5]
  5. Eleftheriadis T., et al., “Vitamin D receptor activators and response to injury in kidney disease.” JNephrol 2010: 23(05): 514-524 [6]
  6. Meg Mangin, Rebecca Sinha, and Kelly Fincher, “Elevated 1,25(OH)2D appears to be evidence of a disabled immune system’s attempt to activate the VDR to combat infection.” Inflamm Res. 2014; 63(10): 803–819., 2014 Jul 22. [7]
  7. by Charlotte LoBuono, “For the First Time, Study Proves Eczema Is an Autoimmune Disease.” Jan. 5, 2015, [8]
  8. Dermnet NZ, “Calciphylaxis,” [9]
  9. AARDA, “Autoimmune Statistics,” [10]
  10. Vitamin B12 deficiency can cause long term nerve degeneration.” August 21, 2013, [11]

Additional references about risk factors for calciphylaxis in dialysis patients:                   These articles are not mentioned in the text above and the research studies are not about secondary hyperparathyroidism but they do suggest that adequate protein intake may help reduce risk for calciphylaxis and that having elevated phosphorus or alkaline phosphatase levels may increase the risk.

  • Zacharias JM, Calcium use increases risk of calciphylaxis: a case-control study. Perit Dial Int. 1999 May-Jun;19(3):248-52.  [link] *This small research study is about calciphylaxis occurring in patients on kidney dialysis – calcium supplements were found to increase risk of calciphylaxis, while iron intake may have been protective, vitamin D intake made no difference between groups, (n=8 women). The study group’s parathyroid hormone and albumin levels were not found to be significantly different then the lab values of the control group of dialysis patients who did not have calciphylaxis. The conclusion includes the suggestion that “use of calcium salts as a phosphate binder” during dialysis might have something to do with the increased rate of calciphylaxis that was being seen at dialysis centers at the time.
  • A Rauf Mazhar, et. al., Risk factors and mortality associated with calciphylaxis in end-stage renal disease.  Kidney International (2001) 60, 324–332; doi:10.1046/j.1523-1755.2001.00803.x [link] *This study (n=19) found an increased risk for calciphylaxis in dialysis patients who were female, and when the patient had elevated phosphorus and/or alkaline phosphatase levels and/or low serum albumin levels. “Calciphylaxis independently increased the risk of death by eightfold.”
  • Doweiko JP, Nompleggi DJ. The role of albumin in human physiology and pathophysiology, Part III: Albumin and disease states. JPEN J Parenter Enteral Nutr. 1991 Jul-Aug;15(4):476-83. [link] *Albumin is the main protein found in blood plasma and having low albumin levels is also associated with poor wound healing and an increased risk of death.
  • Albumin levels can be low even when there is adequate protein intake in the presence of edema. Fluid imbalance can make the albumin values seem lower due to the change in concentration of the blood serum rather than due to changes in diet. However edema and low protein intake may both be problems. A low protein intake can increase the risk for edema.
  • Pickwell K, Predictors of lower-extremity amputation in patients with an infected diabetic foot ulcer. Diabetes Care. 2015 May;38(5):852-7. doi: 10.2337/dc14-1598. Epub 2015 Feb 9. [link] *Severe edema is also a sign of ill health. the presence of edema increased the risk of poor wound healing and the need for amputation for patients with a diabetic foot ulcer.

 

Pyroluria, anxiety and deficiency of B6 and zinc

(originally posted on March 18, 2013, most recent update, 4/9/2017)

Research suggests that pyroluria is a condition caused by a genetic difference that prevents the normal breakdown of pyrroles which are side products of hemoglobin breakdown. [5 , 8] The excess pyrroles are not toxic but when they aren’t broken down to smaller chemicals they instead combine with vitamin B6 and zinc and form a compound that is excreted by the kidneys. In normal metabolism zinc and B6 molecules would be recovered for reuse instead of being excreted. The daily nutrient loss can lead to a chronic deficiency of vitamin B6 and zinc and a variety of symptoms.

Physical symptoms might include white spots on the fingernails from zinc deficiency. Zinc is important for wound healing so skin infections might be more common. Stunted growth and teeth that are crooked from overcrowding may result from zinc deficiency during childhood.

Poor dream recall is a symptom of B6 deficiency. Digestion problems and skin symptoms may occur. Dry peeling lips with poorly healing cracks at the corners of the mouth may be a problem with B6 deficiency.

Migraines, seizures and joint pain may be symptoms of pyroluria. Insomnia, exhaustion and sensitivity to light and sound may be problems. Anxiety can become severe over time and the person may isolate themselves to reduce stress. Depression, mood swings and temper outbursts are possible symptoms. [3, see link for more physical signs and symptoms.]

I learned of pyroluria as a possible cause of B6 and zinc deficiency in a book by Julia Ross, MA, called The Mood Cure, The Four Step Program to Take Charge of Your Emotions – Today. It included a self test and information from a book by Joan Mathews Larson, PhD, called Depression Free Naturally. Excerpts are available on her website which include more detail about pyroluria as a treatable cause of anxiety and depression: [7] Her work has helped patients at the Health Recovery Center for years. The center uses therapies designed to restore nutrient balance and correct deficiencies that may be underlying causes of anxiety, depression or addictions. [healthrecovery.com]

Zinc and B6 are needed for production of neurotransmitters that help prevent anxiety and depression. Mental health problems caused by nutrient deficiencies would not be helped much by typically prescribed antidepressants or anti-anxiety drugs. [1]

Ten percent of people may suffer from pyroluria but the condition is not yet widely recognized in the medical field. A research study found the condition to be more prevalent in people with mental health diagnoses and in groups of violent criminals. The pyrrole chemical was present in 71% of adults charged with sudden onset criminal behavior and in 33% of youth charged for a violent crime. Evidence of pyroluria was also more commonly found in patients with OCD, Multiple Sclerosis, Parkinson’s disease or Lyme Disease. It was found  in 40% or more of people with autism, ADHD, manic depression, schizophrenia, Down’s Syndrome, epilepsy, or porphyria. [35 ]

/Speculation/ This could explain why some studies have found B6 supplements helpful for autism but others weren’t able to replicate the results. If 40-50% of the autistic patients in a study had undiagnosed pyroluria then those participants might find high dose B6 supplements very helpful while the rest of the study group might not notice any change.

The good news is that, once identified, pyroluria is very treatable with use of well absorbed forms of vitamin B6 and zinc. The bad news — the supplements have to be taken everyday because the amounts needed are more than is really possible to be found in foods. The supplements are replacing the excessive nutrient loss caused by the daily excretion of the nutrient pyrrole compounds. Deficiency symptoms may start to return after only 48 hours without the high dose zinc and B6 supplements. [3]

A few other nutrient supplements may also be needed to restore nutrient balance. Magnesium may be helpful and niacin (B3), pantothenic acid (B5) and manganese may also be deficient. [1] The essential omega 6 fatty acid, arachidonic acid, may also become deficient. [2] The nutrients, zinc and vitamin B6, are essential for enzymes active throughout the body. Deficiency of B6 may lead to digestive problems and impaired absorption of B12 and other nutrients. Zinc deficiency can also lead to excessive levels of copper which can be neurotoxic and may require chelation therapy. [3] Avoiding foods rich in copper and red and yellow food dyes may be helpful. [2]

Evening primrose oil is recommended as an additional supplement by a medical doctor in the following post. Evening primrose oil would be a good source of essential omega 6 fatty acids. More detail is included in the article about the mental health and other physical symptoms common for patients with pyroluria to experience. It also states in the article that treatment with the supplements can quickly end the negative symptoms for patients when the condition is first diagnosed and treated. [8]

I have found personally that continuing the supplements daily is an ongoing necessity. Earliest symptoms of the B6 and zinc deficiency may be experienced after only missing a few days of the supplements. For me increased anxiety and headaches may occur after only a couple days of forgetting the supplements.

Before I had discovered the problem zinc deficiency was severe enough for me to have many white spots on my fingernails and for me it also seemed to be the cause of anorexia – extreme lack of appetite. Which is a symptom that was not mentioned in the article [8] that included a long list of symptoms. See excerpt:

Here is Dr. Walsh’s list of some of the symptoms correlated with pyroluria: Poor stress control, sensitivity to bright lights and loud noises, morning nausea, tendency to delay or skip breakfast, very dry skin, pale skin, inability to tan, high irritability and temper, history of underachievement, little or no dream recall, auto immune disorders, white spots on the finger nails, poor growth, coarse eyebrow hair, stretch marks on the skin, severe anxiety and/or depression, fearfulness, obsessions with negative thoughts, delayed puberty, dark or mauve colored urine, affinity for spicy and salty foods, abnormal fat distribution, delicate facial features, extreme mood swings, history of dyslexia, severe inner tension, frequent infections, premature graying of hair, poor muscle development, spleen area pain, joint pain, poor wound healing, psoriasis, tendency to stay up very late, abnormal or absent menstrual periods. [8]

Zinc deficiency has been associated with anorexia nervosa. [9]  For me at the time, swallowing just one or two bites of food at the time would seem like a lot of work. The food felt like dry sawdust when I would try to swallow and my mood when being encouraged to eat would tend towards feelings of “how can you ask such a difficult task of me,” (eating shouldn’t promote anxiety or feel like sawdust). Once I had been on the high dose supplements for a little while my appetite normalized and I don’t get many white spots on my fingernails (an opaque white spot instead of the pinkish color of the skin under the nailbed; white spots may appear in anyone’s fingernail after a bump or some sort of injury damaged it).

Caution: Taking high dose zinc supplements can be dangerous to copper balance in people who do not have pyroluria.

Gluten intolerance and excessive use of coffee or other diuretics may increase the severity of the condition. [3] Infections or other problems that cause increased destruction of red blood cells could also exacerbate the condition. The pyrroles can be a produced during hemoglobin synthesis and also during break down of red blood cells. [6]

If white spots on fingernails seems like a normal part of life then consider reading more about pyroluria. [7] Not all physicians are familiar with the condition and lab samples need to be treated carefully or the pyrrole compound will deteriorate. One lab protects samples from oxidizing by adding ascorbic acid (vitamin C) to the collection tube and the sample is then kept out of light and is frozen until testing. [4]

More information about vitamin B6 and food sources of B6 is available here: Vitamin B6

Disclaimer: Opinions are my own and the information is provided for educational purposes within the guidelines of fair use. While I am a Registered Dietitian this information is not intended to provide individual health guidance. Please see a health professional for individual health care purposes.

  1. By Julia Ross, MA, “The Mood Cure, The Four Step Program to Take Charge of Your Emotions – Today,” (Penguin Books, 2004 ed., New York) p314-315  *This book also addresses nutrients that can help during addiction recovery in addition to other mood disorders.
  2. J. Kaslow, MD, “Pyroluria,” DrKaslow.com: [drkaslow.com] This article suggests that avoiding red and yellow food coloring may be helpful.
  3. Pyroluria, A Hidden Disorder,” Naturalinsight.hubpages.com: [naturalinsight.hubpages.com]
  4. Do I Have Pyroluria,” A self test about the condition is available on this laboratory website under the Reference Tab: [kryptopyrrole.com/]
  5. McGinnis WR, et. al., “Discerning the Mauve Factor, Part 1,” Altern Ther Health Med. 2008 Mar-Apr;14(2):40-50.  [ncbi.nlm.nih.gov] *The abstract mentions that use of B6 and zinc or the use of antibiotics helped reduce urinary excretion of hydroxyhemopyrrolin-2-one (HPL). The chemical was originally nicknamed the Mauve Factor, due to its purplish color.  Prednisone has been known to increase urinary loss of HPL and it is theorized that increased stress would also cause increased excretion of HPL possibly due to changes in intestinal permeability that affect urinary concentrations.
  6. A patient forum, braintalkcommunities.org, has a post by member, Halsgluten, which suggests that SIBO, small intestine biofilm/bacterial overgrowth, may add to pyrrole production by causing an increase in red blood cell breakdown. The pyrrole compound, HPL, can be formed during synthesis of hemoglobin or during destruction of red blood cells. *The observation that antibiotics helped in reference #5 could be due to their helping fight an underlying intestinal infection or other chronic infection that is causing destruction of red blood cells.
  7. Joan Mathews Larson, PhD, “Soothing the Anxious Brain,” includes excerpts from her book, “Depression Free Naturally,” [joanmathewslarson.com]
  8. Pyroluria, Mental Health and the Immune System, JudyTsafirMD.com,
    http://www.judytsafrirmd.com/pyroluria-mental-health-and-the-immune-system/
  9. Humphries, L., et al., Zinc deficiency and eating disorders. J Clin Psychiatry. 1989 Dec;50(12):456-9.
    https://www.ncbi.nlm.nih.gov/pubmed/2600063