Thursday, April 11, 2013

Dr. Joseph Brewer and Mycotoxins


A study was released today entitled the "Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome".

Abstract: Over the past 20 years, exposure to mycotoxin producing mold has been recognized as a significant health risk. Scientific literature has demonstrated mycotoxins as possible causes of human disease in water-damaged buildings (WDB). This study was conducted to determine if selected mycotoxins could be identified in human urine from patients suffering from chronic fatigue syndrome (CFS). Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). 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.
Keywords: mycotoxin; mold exposure; chronic fatigue syndrome; Stachybotrys



The full study can be found here. This is important work.

Mycotoxins are one of those unheralded co-factors in ME/CFS -along with mercury, mold, and other environmental factors. Mycotoxins can be added to the list of "the usual suspects" that need to be considered, and treated - gut ecology, mitochondrial defects, diet, hormonal irregularities, viral activations, bacterial complications, mycoplasmas and so forth. It is a long list. Mycotoxins might be an important confounding factor in this illness.

Dr. Joseph Brewer has worked on this study. Dr. Brewer is one of the foremost clinicians/researchers in ME/CFS and Lyme disease.  Dr. Brewer is an Infectious Disease doctor who practices in Kansas City, MO. Dr. Brewer has worked with both HIV and CFS patients for 25 years. He has also treated many Lyme patients. In my estimation Dr. Brewer is among the very best physicians dealing with this illness. Dr. Brewer has shown interest in identifying causes of or confounders associated with the immune dysfunction in ME/CFS. After his full day of treating patients, Dr. Brewer reads ME/CFS research late into the night.

In this study Dr. Brewer has teamed up with Dr. Dennis Hooper of Realtime labs. Dr. Hooper gave a talk at the recent Physicians Roundtable in Tampa, FL. Dr. Hooper has developed an important mycotoxin test that was used in this study. The test is a urine test and looks for three mycotoxins: aflatoxins, ochratoxin A, and macrocyclic trichothecenes. More about mycotoxins and Realtime labs mycotoxin testing can be found here.

My daughter has done this test twice. The first time she came back with elevated Ochratoxin A. As far as I can determine Ochratoxin A is associated with water damaged buildings. Several ERMI tests indicated mold associated with water. It appears that my daughter's apartment was in a building built on a stream bed. While there was no visible water damage or mold, I could never remediate the building and get a reasonable ERMI test result. I write about this experience here.

Eventually I helped my daughter move (for non-mold related reasons) to another apartment. I was expecting that a repeat Mycotoxin test would reveal that the Ochratoxin A had disappeared. This turned out not to be true as the Ochratoxin A was still elevated. (I have no idea about the relativity of this elevation). The suspicion has to be that she was moved into another water damaged building.

Treatment of mycotoxins is: Avoidance, FIR sauna, and cholestryamine. I would imagine that other detox regimes might be helpful.

This study highlights once again the complexity of ME/CFS and gives us a good chance to look in this direction to see if there are problems (confounders) that can be remedied.


33 comments:

  1. David Straus is a professor at Texas Tech and is likely the foremost researcher on the effects of toxic mold in this country. He suggested this study to me a few years ago, and so I'm really glad that he followed up on it. I agree that it's really important.

    I've known people who have moved to clean environments but had mycotoxins elevated in their urine for years afterward. Some people's bodies eliminate these particular toxins very, very slowly, unfortunately.

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  2. One thing that does puzzle me is ... if they are in the urine, are they not being eliminated then ? I mean, if the theory is that a subset of those with CFS can't eliminate mycotoxins and they therefore contribute to the illness, why are they showing in the urine ?

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  3. People living in a bad environment for an extended period of time can acquire an enormous amount of these toxins in their bodies. Just because they can eliminate small amounts through their urine doesn't mean that they can effectively rid themselves of all of them in any reasonable length of time. It might take decades or centuries.

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  4. While this is indeed an important study, and great news for those who suffer and have suffered from toxic mold poisoning, I think it's important to point out that Dr. Brewer's practice specializes in mold cases, so perhaps his patient group may have a much higher level of various mold or mycotoxins in their blood compared to other patient populations.

    And could it be, that those who have had a diagnosis of mold toxicity, were misdiagnosed as having ME/CFS?

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  5. To my understanding, Dr. Brewer is an infectious disease specializing in classic ME/CFS, who historically has focused on the viral component of the disease (treating with antivirals such as Valcyte and transfer factor). I've never heard of him having any interest at all in mold prior to his participation in this study.

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  6. My story of "Mold at Ground Zero for CFS" was vindicated over a decade ago.

    But this abstract is very compelling validation.

    Perhaps people will start believing it now that an official ME/CFS doctors has come on board.

    http://www.cfsuntied.com/toxicmold.html

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  7. "Surviving Mold" by Dr Ritchie Shoemaker explains my motivation in agreeing to volunteer as a prototype for "a new syndrome".

    I could use interest and curiosity about CFS to get research into the effect of mold.

    It seemed that starting a syndrome would be the perfect meme to accomplish the goal, since everyone wants to cooperate in the interest of progress, and helping others.

    All I would have to do is explain that mold was present and part of the evidence that led to the illness in the "clusters" of Mystery-Illness that CFS was based on, that I had achieved a spectacular degree of recovery by "mold avoidance" and my job would be done.

    Those who wanted to help would "Pay it forward" and CFS researchers would come back to the startpoint of the syndrome to find out.

    That was the plan.

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  8. The problem Erik, is that ME/CFS existed long before Tahoe (perhaps dating back hundreds if not thousands of years), despite your endless claims that you were "Patient Zero" (an insult to the many thousands who were sick and died before you).

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  9. The problem is, "Anonymous", that until 1988, there was no syndrome or medical entity called "CFS".

    This dataset was collated in response to an outbreak at Lake Tahoe which was identified by the CDC/Hyde, Parish and Shelokov as possessing all the primary determinants of ME, and appearing very much like the 1955 Royal Free disease"

    Similar, but not identical.

    As Carlos Lopez of the CDC's herpesvirus branch stated when he announced the creation of the CFS "operational concept", the goal was to find out if the two were the same.

    The necessary studies to determine this have yet to be done.
    No one is certain that CFS is no different than outbreaks of the past until they are.

    As we have just seen. I knew that biotoxins are part of "CFS"
    I have no biotoxin data on the Royal Free disease.

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  10. Thanks for writing about this Chris and setting the record straight that Dr. Brewer is not a "mold doctor". I have no idea where people are getting this information, when he has been every much as diversified in his approach as Cheney or Klimas.

    I also wrote about this, with a focus on the anti-inflammatory approaches to mold-induced C4a activation here: http://blog.healclick.com/most-cfs-have-mycotoxins-vip-lowers-c4a/#comment-862320312

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  11. At the bottom of the CFS Un-Tied blog is a link to Dr Shoemaker's presentation at the 2009 IACFS/ME conference in Reno.

    ________________________________________

    Verrillo, Erica (2012-09-14). Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Kindle Locations 4189-4192). Erica Verrillo. Kindle Edition.

    Erik Johnson, one of the first CFS/ ME patients treated by Dr. Peterson and Dr. Cheney during the Incline Village outbreak, identified mold exposure as the primary cause of his symptoms. Through a program of rigorous avoidance he managed to control and overcome his symptoms. Read his story at:
    http://www.cfsuntied.com/toxicmold.html

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  12. When the Kaplan/Holmes investigation culminated in the decision to create a "new syndrome" to investigate it, I was thrilled to think that we were finally going to get some research.

    Future "CFS Researchers" would come to us looking for clues about this well-publicized incident.

    I thought, "I won't have to ask twice. They'll WANT to know what happened"

    I figured it shouldn't the average researcher more than about thirty seconds to manifest an "interest response" in hearing from an eyewitness to these events.

    Anything longer would not be consistent with "scientific curiosity"

    Just as with doctors, it appears their minds are made up in about that long, but there is no way they can FAIL to take an interest in "CFS" as this is part of their "job description"

    Anything longer indicates that researching "CFS" is not what they have in mind, but rather, have a conscious plan to ignore the original "entity" for the purpose of supplanting it with one of their own devising.

    Their chances of "solving CFS" are much higher if they can invent their own version to solve.

    Everything I've seen in the last 25 years confirms that this is EXACTLY how researchers operate.

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  13. Thirty seconds is up.


    Which leaves the questions,

    "What new parameters are you inventing.
    Is your "CFS" based on any outbreak, and in what ways is your invention so different from the original CFS that you feel the need to make the first one irrelevant and forgotten?"

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  14. Erik, you're splitting hairs. Of course the name "CFS" wasn't coined until 1988...that doesn't mean in any way, that the same disease didn't exist prior to 1988.

    And who, WHO is saying that the "first one" is "irrelevent and forgotten"?

    Seriously, who is saying this?

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  15. That's a silly thing to say, since you know the Tahoe outbreak happened in 1985.

    Of course the illness existed prior to 1988.
    In the PROTOTYPES, no less, who had been sick for several years before the syndrome was coined by the CDC in response to the evidence.

    Whose evidence?
    People the CDC vaguely heard of?
    Rumors from the streets of tired people?
    Clusters that were never investigated?

    Or would you be willing to believe what you read in Osler's Web about the "rift between four doctors in rural Nevada" and all the evidence they were divided over was the issue and entity in question, when the syndrome was coined?

    I'm not going to list all the people who have tried to consign that evidence to oblivion.

    Suffice it to say that everyone who fails to learn about it, takes a non-interested attitude, and says it is "splitting hairs" and basically says, "There were other clusters so that doesn't matter".... is engaged in "saying this", for all practical purposes.

    Which is why you, and the rest of the world don't know what happened, and missed out on the benefit of having this knowledge of the mycotoxin factor.

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  16. Dear CFS community.

    Please notice that it is not the CDC that is depriving you of the mycotoxin clue.

    It appears to be a choice of disinterest that is made by yourselves, as indicated by silence.

    I think you are making a huge mistake.
    But that's just me.

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  17. Personally I think: Mycotoxins -> CFS. But I think this is the tip of the iceberg. They probably are a primary causative factor in a lot of other immunotoxic and neurotoxic diseases. I'd love to see a researcher measure mycotoxins in, well, pick almost anything chronic. I suspect the results would be stunning.

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  18. The CFS community is in a bit of a conundrum.

    If they cite Osler's Web or the Tahoe incident for garnering credibility for ME/CFS, that raises questions about "what happened there?"

    Which leads straight to the biotoxin evidence.

    By refusing to research, acknowledge, or consider the inception of CFS to be connected to the syndrome, the CFS community strips the syndrome of its basis, and make CFS devoid of any meaningful credibility.

    Their "separation" of origin and syndrome would make CFS nothing more than an abstraction founded upon nothing that was invented by the CDC for no particular reason.

    And the CFS community DOES this for the VERY counterproductive reason that they prefer to have CFS be nothing but a virus.

    All to little avail, because the story is going to come out in spite of their efforts to suppress it.

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  19. "This study highlights once again the complexity of ME/CFS and gives us a good chance to look in this direction to see if there are problems (confounders) that can be remedied."

    ------------------------------------------------

    Just so long as the direction of "Ground Zero for CFS" is never looked in.
    All others, certainly, but not that one.

    Not where a prototype for the CFS syndrome told everyone about the mold, right from the start.

    That would be admitting to one of one of the most outrageously stupid "Boff's" in medical history, wouldn't it?

    Let's see if we can cover it up, so no one will ever know, shall we?

    (Just ignore Dr Shoemakers books. He's just ONE doctor.)

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  20. Because the rumor that Dr. Brewer was a "mold doctor" has repeatedly come up in the CFS community, I wrote to him to ask him to comment.

    Below is his response, which he stated could be shared publicly. I encourage those reading this to feel free to share it.

    ***

    Lisa,

    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 simply 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 that 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 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 that helps.

    Joe Brewer, MD

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  21. Dr. Brewer is an amazing Infectious Disease doctor. And no he is not just a mold doctor in fact when I met him 3 years ago he never brought up mold, he's been the most thorough doctor I have ever had. He is the most compassionate, thoughtful and genuine doctor I have met. He sees patients with all sorts of serious diseases not just patients with ME. This is a small town doctor who doesn't read blogs or get involved in politics. Just good treatment through evidenced based medicine. I can't say enough about he and his wife and practice.

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  22. I desperately need help. After moving into apartment here, 2years & 6 months it was detected that I had elevated eosinophil levels which caused pancreatitis (very painful) my son was diagnosed with autism, and my cat died. Me and both my children suffer from bouts of diarrhea, me & my son get headaches (he also complains of leg pain). I was diagnosed with IBS, & fibromyalgia after move in. It takes me a long time to get out of bed in morning my whole body hurts. We also get stomach pains, my daughter randomly vomits. I suffer from hair loss, fatigue for which I have to take meds so I can stay up. My memory has become horrible my son also shows signs of bad short term memory. My feet and hands get cold. Numbness & tingling in hands/feet that cant be explained by other doctors or tests (MRI). I used to be able to go for walks with my son, now my pain levels and lack of energy makes this impossible. I had to euthanize our 7 year old cat this year due to her liver and kidneys were shutting down. I have complained to board of health before but was met with such harassment by management here, I fear ever trying to do so again without already having a lawyer. I spoke with an attorney and without the medical and home tests (which I cant afford) they cant help. I would move but I cant afford that either. I tried looking into loans & credit cards(of which I would have paid off after settlement was reached) but the most I was offered was $500 and just 1 myotoxin test is 699. I don't know what to do.

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  23. Hello,
    I am affected by this chronic illness , as I live in an old, cold, damp caravan, but it can affects you in any place/house affected by mold. I live with cotton swabs (wet) in my nose to protect me from inhaled mycotoxins, that goes straight in the blood and gut. I have this so called cfs/candida , but for sure the root cause are mycotoxins . You need to spray at least once a day with mix of sodium chloride/bicarbonate in the nose to clear mucosa. Eliminate all the wood furniture and all moisture sources, and ventilate well the space after cleaning. I want to get a isothermal trailer to modify it in a living space to have control over mold. But now I only survive with almost no money to eat. And I must work for at least a year to buy an old trailer to regain my health. Best wishes to all sufferers and we all should unite to uncover the real truth regarding the real toxicity of mycotoxins.

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  24. This comment has been removed by the author.

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  25. I've got my kit to do the mycotoxin urine test from real time labs but I got a message today from the MD who ordered the test to avoid carbs for one week and lose a few lbs (I only weigh 120!!) before taking the test. Supposedly my body will be more likely to flush toxins in urine if I follow this protocol. Can anyone speak to this? Will the test results be more accurate?

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    Replies
    1. My doctor said to take a hot HOT bath or sauna to stimulate release and THEN said, well, why don't you take Glutathione for a week (2x a day - not sure the dosage yet) to stimulate release of the toxins into urine. He'd had a few patients whose tests came back negative and with the glutathione they turned positive. Not sure why this wouldn't be s.o.p. but not clear if this test is well understood yet. This was yesterday, so that's all I know.

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  26. RealTime Laboratories are a disgrace!..They told me they would file my insurance and i would get most of my money back for their mycotoxin test, I spent hundreds with them and barely got $50 dollars back. They also said they would refer me to a specialist doctor for my mold sickness, he knew nothing about the subject and was clearly just getting a referral from them and what ever deal they struck. Now I am worse off and back to where I started. Not happy..don't use this company.

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  27. Can you tell me if mold illness (CIRS) would affect HIV test accuracy/window it would present?

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  29. I need a mold doctor in Kansas City....asap Any info would be appreciated....

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  30. I am concerned that Dennis G. Hooper with RealTimeLabs appears to be the same doctor involved in various swindles and apparent malpractice activities according to this LaTimes article. http://www.latimes.com/local/la-me-kdday3dec07-story.html#page=1

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  31. If this is the same fellow, then I worry that he is not a disinterested scientist pursuing a cure for CFS but rather a scoundrel willing to capitalize on the suffering and desperation of his patients. I read his 2009 paper with great interest initially, thinking that it might hold a clue to my daughter's mysterious and devastating illness. My hopes are fading fast as I am beginning to suspect that the research was rigged and that the whole thing was arranged to enrich (Hoopers!) Real Time Labs. Please, someone convince me that I am wrong! I have spent dozens of hours reading about molds and mycotoxins and, while it would be wonderful to have such an apparently simple solution to this terrible illness, it is starting to seem like quite a remote possibility. We must remember that false "answers" that are held up as the truth are even worse than simply not knowing. These false hopes drain our resources and distract from finding truer answers. To make matters worse there ARE people who exploit suffering for their own gain -- doctors are in a unique position of temptation in this regard.

    --balwit

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  32. Finally. It is important to look at the publishers of these articles. Toxins is the journal, MDPI is the publisher for several of Hooper and Brewers articles. MDPI is an open access publication that claims to be peer reviewed but in reality ....

    http://scholarlyoa.com/2014/02/18/chinese-publishner-mdpi-added-to-list-of-questionable-publishers/

    WE NEED GOOD SCIENCE for CFS! The more time we give to give quacks and scoundrels the less time we have to find real causes.

    BTW. I have nothing negative to say about Brewer except that he may have exercised poor judgement in affiliating with Hooper. Brewer's patient reviews suggest that he is a compassionate and patient focused human.

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