Sunday, April 21, 2013

Mycotoxins and Mold

Mycotoxins and mold have been on my mind for a number of years now. They routinely fall into line with a host of variables: gut ecology, hormone regulation, diet, resting and pacing, viruses, bacteria, mycoplasma, Lyme disease, mitochondrial and methylation deficiencies, sleep abnormalities and mercury. It is a vast juggling act. I have written elsewhere about my experience trying to remediate the mold in my daughter's former apartment. I am interested in the idea of mycotoxins as a confounder to recovery in ME/CFS.

Yesterday I watched once again Dr. Ritchie Shoemaker's astonishing 15 minute lecture at the IAMECFS conference in 2009. I remember thinking how important this information was when he presented - but no one seemed to notice, and his profound insights were just buried under a pile of mediocre presentations. This lecture unfortunately is not online. Eric Johnson has the written lecture on his website.

Yesterday I also read a long review article on Water Damaged Buildings, Mold and Mycotoxins. It is by Janette Hope and can be read here. This article clarifies and consolidates known information on mold, mycotoxins, various bacteria and endotoxins, deals with the mechanism of illness, outlines symptoms, neurological and otherwise, and suggests treatments.

Among the treatments are FIR sauna and Cholestryramine. I was particularly interested to read about "Probiotics and Dietary Interventions" - "These treatments have the potential to have significant beneficial effects, as much of the metabolism of toxins occurs via intestinal biotransformation". So here we have a potential cross-over of gut ecology treatment and mycotoxin remediation. Maybe these same ME/CFS patients in Dr. Brewer's study have a functional imbalance in their gut biome. I think it would be worth finding out.

Lisa Petrison has written to Dr. Joseph Brewer regarding his experience with mycotoxins and mold. Dr. Brewer's answer follows:


Although I am an infectious disease specialist, I had no focus whatsoever on "mold issues". Prior to February 2012 (when I first heard about the urine mycotoxin assay at RealTime Laboratories) I didn't even have an interest in mycotoxins or environmental illness. These findings surprised me as much as anyone as the results began to unfold last year.

These patients were all randomly tested. These are long standing patients of mine that were previously diagnosed with CFS/ME (basically"average CFS patients"). We discussed the test and offered it to them at routine follow-up clinic visits. Very few suspected mold illness until I brought it up at their routine visits.

We only found that they "lived/worked in buildings with visible mold" after we asked. Some patients didn't even remember the exposure until we prodded a bit (mainly because the exposure had been so far in the past - such as an apartment they lived in college).

I now see patients every week that are shocked when I bring up mold. They have very impressive exposure histories but no one asked.

If these CFS patients who are on the blogs get tested, I suspect ~90% will be positive. A doctor from the East coast has found almost identical results to mine in their cases (90% positive). Same for a physician on the West coast.

Anyone who sends a specimen to RealTime Lab must pay for the test "up front" but many of the patients ended up getting reimbursed (at least for most of the testing cost) from the insurance. They were not biased since most were hoping to get reimbursed.

I think it is hard for people to get their "arms around this" and want to implicate selection bias but that simply was not the case.

I hope this helps.

Joe Brewer, MD


  1. ME/CFS Alert. Interview with Dr Kenney DeMeirleir.

    Dr DeMeirleir explains that the mechanisms for a positive response to ampligen should be studied.

    Considering that I walked out of Dr Petersons' ampligen program to try "something crazy" instead, and wound up on top of Mt. Whitney,
    I might just have a clue.

    Mold Warriors
    By Dr Ritchie Shoemaker
    Chapt.23. Mold at Ground Zero for CFS
    "History doesn't remember the critics"

    page 447
    -Answers from Abroad: Vindication for Erik

    One of the researchers who was well represented at the CFS meetings was Dr Kenny DeMeirleir from Belgium. He has published extensively on the different mechanisms that contribute to Chronic Fatigue Syndrome. Before I could talk to him, however, Dr.Robert Suhadolnik presented his data on the enzyme complexity involving RNase-L. He had been working with Drs Peterson and Cheney for some time.
    I asked him about mold and CFS. Making me fall to the floor, he said, "Oh yes, we know a lot about mold exposure in the original cohort in Incline Village. The source of activation of the endopeptidase that cleaves RNase L is increased response of a cytokine, alpha interferon."
    "Now wait," I said, "our data is very clear that alpha interferon levels are increased like crazy in mold patients compared to controls. Can we say that mold exposure doesn't change RNase L like you have reported in putative viral CFS patients?"
    Dr DeMeirleir chimed in, "We know that cytokine increases are important activators of the subsequent increased activity of these enzymes. Given your data, we need to look again at our data in which we clearly see changes in innate immune responses in CFS. Mold could be the common denominator.

    The issue for me was that while DeMeirleir knews about MSH, innate immune response activation, including complement, coagulase negative Staph and changes in exercise tolerance and reduced VO2 max, he didn't know about VEGF.

    But he knew about mycotoxin binding to Toll receptors (no one else did), in fact, he said that a Toll 3 receptor, a mycotoxin receptor, was critical to the abnormalities in CFS. When I said that the interferon and IL-1B increases could be mycotoxins, binding to the Toll 3 receptor, activated excessive cytokine responses that then altered genes expressing autoimmunity, VEGF and erythropoietin and lowered MSH with all its downstream physiologic changes, Kenny just smiled.

    "Yes, when we can put in the changes in the other findings (increased elastase is just one example) that I know to be true, alongside yours, then we might begin to understand Chronic Fatigue Syndrome," he said.

    Let's look again at the chronic fatigue from a mold perspective, looking at patients like Erik. Was there the potential for mold exposure at Incline Village? Sure, but no one looked properly. Was there a distinctive grouping of symptoms? Sure.
    Was there a disciplined "ruling out," a differential diagnosis of all variables that led to the viral diagnosis. No.
    Now that we know the biomarkers for the viral cause of CFS are not specific for viruses and indeed they're also affected by mold, can we rule out mold as the source of the illness?
    Of course not.

  2. Here's a brand-new paper from Dr. Shoemaker, suggesting that Vasoactive Intestinal Peptide (VIP) is helpful in patients experiencing chronic inflammation.

    However, it's important to note that Shoemaker insists that VIP only works in patients who already are living in a decent environment in terms of toxic mold (which he distinguishes by an ERMI score <2).

    Could it be that certain other CFS treatments (such as, say, Ampligen) might also only work in patients who are not living in very moldy buildings?

    That does not seem so far-fetched to me. It certainly seems a better explanation than any other that I've heard for why drugs like Ampligen work well for some patients but do nothing (or are counterproductive) for others.

    I thus would like to suggest that if researchers would like to get response rates on potential CFS drugs that will get them approved for general use, they might do well to at least consider the possibility that mold exposures are sandbagging their results and do some testing with moldiness of living environment as a independent variable.

    Thanks very much for this great post, Chris.

    Best, Lisa

  3. Watching other ampligen protocol patients relapse in moldy houses helped shape my decision to go "all out" on my "mold avoidance experiment".

    If mycotoxins are a Toll Receptor 3 binder, and ampligen is a TLR3 agonist, it would be remiss to fail and take mycotoxin exposure into account.

    Hypothesized mechanism of action
    The manufacturer says rintatolimod acts by stimulating the innate immune system. Cells normally encounter double-stranded RNA molecules like rintatolimod and poly I:C only during infection with RNA viruses. A receptor on the cell surface called Toll-like receptor 3 (TLR3) is part of an evolutionarily conserved family of “pattern recognition” receptors that detect pathogens immediately, even those the body has not yet encountered, long before adaptive immunity can intervene against foreign invaders. These molecules are critical to the first line of immunological defense against a broad range of pathogens, such as viruses, and even various forms of cancer.

  4. Thanks for this post Consuegra, and especially the link to the various studies on mold remediation and yes, the probiotic and dietary interventions.

    One probiotic that is often recommended for ME/CFS patients is lactobacillus reuteri. Turns out it has potential for improving various parameters, at least in mice exposed to aflatoxin, according to an article "Mycotoxins in Our Food" from the Oct 2012 Townsend Letter for Doctors.


  5. Sat Oct 16, 2004 6:04 pm
    Message #17887

    Re: [cfs_research] Press Release -ME/CFS Conference

    > Hi, Erik.
    > One thing you might be interested in:
    > I attended the conference, and I spoke with Dr. Kenny de Meirleir.
    Among other things, he said that he believes that the Truckee
    > outbreak of CFS was caused by mold.
    > Rich Vankonynenberg

    Hi Rich, I had heard this through my mold contacts.
    And also that Robert Suhadolnik had come around to considering this
    as well.
    It only took twenty years of screaming this for someone to finally
    What can I say?, except,


  6. Just found this looking up Janette Hope. Am a victim of mold poisoning in an overweatherized, water contaminated Edina home back in '96. Joined GIHN back in 2011. Am still struggling but did see several EI docs in the early 2000's. Would like to share info/resources if possible. My e-mail is My story is 2/10/2012 on GIHN.

  7. # Dr Ritchie Shoemaker Reprimand & 2 year Probation 03/20/2013

    1. Wow...what a con artist!...hope he and his methods are not and never used again!

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