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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Detection of Mycotoxins in Patients with CFS

Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.

  1. gailw

    gailw

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    lfish, someone from Facebook recommended I ask you a question I posted on FB earlier today, a quote from Christopher Cairn's blog:

    "Dr. Brewer has been surprised, astonished really, by the results of treatment. In his first 100 patients treated, 70% showed improvement, including six whose symptoms completely resolved, including all symptoms of their larger illness.

    With treatment, the successful patient's urine Ochratoxin A will go down to zero in a matter of some months. The Trichothecenes (MT) takes longer but it too will diminish with treatment.

    Three quarters of the patients treated had preexisitng sympotms of sinus problems. One quarter did not. Both segments showed equal improvement.

    Dr Brewer has continued testing and treating more patients. He has now tested 350 patients, 325 of whom are positive for one or more mycotoxins. More Trichothecenes (MT) have been showing up recently in his patient population. He is now treating up to 200 patients and I believe another paper will be coming out soon. Dr. Brewer reports that those patients who have fully resolved and ended treatment tend to relapse and have to go back on treatment."

    The reason I'm asking for citations is because I need to prove this to my family practice doctor. I don't see anything about this on Dr. Brewer's medical practice website or in any of his papers. I also tried finding Dr. Brewer's talk at the ILAD conference - nothing was found. If you happen to know if Dr.Brewer has information published somewhere, could you please let me know? Thanks a lot!
    Little Bluestem likes this.
  2. Christopher

    Christopher Senior Member

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    I find the highly emotional but disguised as skeptical reactions to mycotoxin involvement in ME/CFS interesting.
    dannybex likes this.
  3. How are we supposed to know which treatment to go for?! There are so many small studies like this where very high success rates seem to be found. There's Dr Chia with the enteroviruses with treatment is Equilibrant, there's the old fecal transplant study, there CFS + POTS patients doing well on IV saline, theres mycoplasma which apparantly could be a big part of it, there's people getting better on antibiotics, antivirals, antifungals, methylation protocols, jaw surgery. I've had endless tests with no infectious agent being found yet improved dramatically on IV antibiotics for appendicitus 18 months ago (only to relapse). It seems to be a case of gradually try everything that appears to have a high enough chance of success one by one for years until either something works or a serious side effect occurs. We need funding for much larger studies for these various options to save us from this madness!

    More on topic: How much does this anti-mycotoxin treatment cost? I'm interested due to having chronic sinusitus for the last few months on top of my CFS.
    Last edited: Apr 8, 2014
    Little Bluestem and searcher like this.
  4. Ifish

    Ifish

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    Brewer has two published papers. The subject of the first was the results of mycotoxin tests on cfs patients. The second centered on research supporting his hypothesis that sinus colonization is the cause of production of mycotoxins and therefore the root cause of illness. He has not published any papers on treatment results. The closest thing you will find is the Grant paper: http://www.icaaconline.com/php/icaac2013abstracts/data/papers/2012/M/2012_M-1063.htm

    Brewer is compiling data on his treatment and I think he will publish something eventually, but I don't know when. I think your best bet is to contact ASL Pharmacy and ask if they can refer you to a doctor that is familiar with the protocol.


    gailw likes this.
  5. Ifish

    Ifish

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    I believe insurance will cover the costs in most cases. Ampho B is off patent so it is not nearly as expensive as newer medications. In my case my cost is $30 per month plus the cost of the atomizer.

  6. globalpilot

    globalpilot Senior Member

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    Yes, and from 3 brand new posters. It is strange.
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  7. Ifish

    Ifish

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    I took a look at the first study and I am getting numbers far different than yours. In part 3 they talk about the average positive score vs. the threshold. All healthy controls were under the threshold. My math shows that the average positive for the three categories of mycotoxins compared to the threshold is 470%, 310%, and 420%.

    By the way I have a 12.47 ppb value on tricothecene vs a .02 threshold so I am 623.5 times the threshold.

    So it looks like when people are over, they are way over. Let's take a look at alcohol. I have read that alcohol is a mycotoxin. The legal blood alcohol limit is .08% in most states. For most people a couple of drinks puts them at around .04% and they are ok. But what happens when they drink 4x that much? Now they are a .16% and it is a very serious problem. Drink enough and you can become very sick.

    I don't understand why some people say there were no healthy controls. In the paper it was stated that the controls were "healthy" with "no known toxic mold exposures in water-damaged buildings". It is a neutral statement. It was not stated that these healthy people were never exposed. Indeed, it is logical to assume that many of these people would have been exposed at some time in their life. Brewer has gone on record as saying that the test subjects were not selected based on exposure. The fact that most were exposed was ascertained after the fact.

    It is true to say no level of toxicity has been set. This information is simply not available. It would seem quite significant that healthy folks almost always fall under the threshold while CFS patients almost alway go over in one of the three measurable myctoxins.

    I am interested in your point about digestion of food with aflotoxin. Can you cite some specific information? My feeling is that this is not a valid comparison.

    One other interesting point about alcohol. It is toxic at a certain level, but people uniformly detox it completely in a realtively short period of time. Then why is it that people supposedly can't detox other mycotoxins?

    By the way, I have no scientific training beyond high school. Previously you indicated you "used to know a bit about macrofungi". You may have some training that would lend more credence to you opinion. If so, I think many people would want to know. Can you elaborate on that?

    Last edited: Apr 8, 2014
  8. acer2000

    acer2000 Senior Member

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    I think the tough thing is going to be working out who really has or hasn't had exposure to water damaged buildings. Its sometimes really hard to figure out. Also, according to shoemaker some people genetically can't dispose of mycotoxins. So I'm not sure Brewer's assertion is 100% accurate. Perhaps that could account for the number of people who he treats that don't improve as much. Its tough to say though... it would be good if he measured the parameters shoemaker talks about to document response to treatment biologically and correlated it with symptomatic improvement.
  9. dannybex

    dannybex Senior Member

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    @Ifish re: Input and output:I was wondering if Brewer suggests that patients consider a low or lower mycotoxin diet? Many foods can be quite high in mycotoxins, especially ochratoxins (which I think were the ones that came back highest in his study) -- like cereals, grains, alcohol (as you mentioned), coffee, cocoa, plus dried fruits, etc..

    http://www.ncbi.nlm.nih.gov/pubmed/22411363

    http://en.wikipedia.org/wiki/Ochratoxin_A

    Thanks in advance.
  10. Ifish

    Ifish

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    Brewer hasn't mentioned a lower mycotoxin diet, but it would seem to make sense, especially with alcohol. I know some other doctors do recommend it. He mentioned that, among healthy controls, about half had some small amount of mycotoxin so perhaps they were getting some in the diet. Mycotoxins have been heavily studied in agriculture and it is clear they have a major effect on animal growth rates, etc.

    dannybex likes this.
  11. N.A.Wright

    N.A.Wright Guest

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    Credence to an opinion on a web forum ??? The phrase ‘used to know a bit’ was intended entirely literally, I’m not claiming professional insight and anyway post illness onset any such capacity becomes in doubt, particularly in the biological sciences where things are subject to rapid change and constant updating of knowledge is needed. What I do take from past knowledge though is that fungi are all around us and are part of us, and because of that identifying fungi as pathogens needs more than the coincident presence of their biological by products.

    I really don’t think that Brewer’s work needs specialist appraisal to identify the short comings – you’ve identified an issue of concern yourself but gloss the significance: I don't understand why some people say there were no healthy controls. In the paper it was stated that the controls were "healthy" with "no known toxic mold exposures in water-damaged buildings".

    The CFS paper does indeed state ‘healthy controls’ but there were no controls at all in that paper. The ‘controls’ are referenced to a previous work where they are described not as ‘healthy’ but as ‘patients’, and their selection is based on reporting of non mould exposure. There was no randomisation involved. I’m not going to labour through why the methodology is dubious, but as I wrote in a reply on the CFSPatientadvocate Blog:

    In Int. J. Mol. Sci. 2009, 10, 1465-1475; doi:10.3390/ijms10041465 Brewer and others, selected 55 patients (health status unstated) who were deemed not to have had toxic mold exposure (method unexplained) as a ‘control’ group. All 55 tested positive for mycotoxins, however Brewer et al arbitrarily set the results of these ‘non exposed’ controls as the base line between clinical and non clinical significance. There are some obvious problems with this approach, most particularly there is no means to associate a test result and a disease process.

    As you’ve noted Re: aflotoxin, there’s a huge volume of research material, much of it in the public domain. The veterinary material (which is very extensive) may not be wholly applicable to humans but it certainly sets some parameters, and aflotoxin related liver disease in humans sets a measure of dietary exposure way beyond anything suggested as relevant in the various CFS mould hypotheses.

    The logic of relating percentages of tiny amounts of something to percentages of absolutely vast amounts of something else (alcohol) escapes me entirely. Basically I just can’t see the relationship between known toxicity and what is being claimed. Mould as an allergen is well established and I don’t understand why anything additional is needed as an explanation of what has all the appearance of allergy symptoms in ME/CFS. Given the strong indications of B cell dysfunction (Rituximab etc.) in ME/CFS, if fungi do play a pathogenic role then allergy, which is notable for having responses in the parts per billion range, seems a far more likely vector than toxicity where exposures multiple orders of magnitude higher are required to produce recordable pathology.

    I don’t think there’s anything I can add further to this thread, particularly noting the way the discussion is going. My take remains that as far as toxicity is concerned levels are so far below anything associated with known pathology that there’s a pretty profound lack of plausibility in mycotoxins causing disease at those levels. Rhinitis could be caused by non identified fungal infection but I don’t understand how in the absence of competitive trials that could be easily distinguished from ongoing allergy where recurrence is cyclical.

    Anyway I shall leave this discussion to others, it certainly isn’t in the frame of the mycological discussions I’m used to.
  12. dannybex

    dannybex Senior Member

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    @N.A.Wright I appreciate your replies and input on this thread. Perhaps some of us are indeed overly enthusiastic about Brewer's and/or Grant's protocols, but for me, they make sense. I've had a chronic, extremely stubborn sinus infection for 16 years, that antibiotics have never seemed to touch -- in fact have just made it worse. I also have past mold exposures on multiple occasions when I worked as an apartment manager until I had to quit in 2002. My subsequent 2 apartments were tested, and came back clean for toxic molds, so I thought mold wasn't my issue.

    Now, because of this paper, I'm reassessing that idea. And I'm intrigued and renewed with hope, because his hypothesis that molds interfere with mitochondrial function also may help explain my situation, as I've tried all the supplements, etc., that are supposed to help repair/improve mito function (not to mention dozens of other protocols) to no avail.

    The fact that his long-term patients who also seemed to for the most part not find much benefit from other treatments, yet are now improving and in some cases recovering, says to me that there is something here that may just be a big part of the puzzle.

    You said over on the CFS Patient Advocate Blog:

    "The difference between Brewer’s controls (negatives) and the deemed positives can be explained in numerous ways and the association between a positive test and ill health need be no more than coincidence."

    If that were the case, then I would think that they wouldn't be improving as their tests improve. ?
  13. globalpilot

    globalpilot Senior Member

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    place and Forebearance like this.
  14. Ifish

    Ifish

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    Not silly at all globalpilot. My ent has used baby shampoo for years. There are studies to back this up. The Chelating PX used in Brewer's protocol contains EDTA and Polysorban X. Polysorban X is the surfactant in Johnson’s Baby Shampoo. So the EDTA binds to the minerals that would otherwise hold the biofilm together while the Polysorban X helps it all slide out. This might be one reason that Brewer seems to be getting better results than prior efforts with antifungals alone.


    quote="globalpilot, post: 451696, member: 588"]This may sound silly but it may be worth looking into baby shampoo for your sinuses.
    Here are a couple links. In addition to the mold.

    o http://www.omaha.com/article/20131204/LIVEWELL01/131209603/1685

    o http://blog.sethroberts.net/2014/01/19/journal-of-personal-science-how-i-cured-my-sinusitis/[/quote]
    globalpilot likes this.
  15. globalpilot

    globalpilot Senior Member

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    [/quote]

    I think so too ifish and I need to incorporate this into my protocol.
    How are you feeling overall ? Do you feel this protocol is helping you ?
  16. Ifish

    Ifish

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    I am near the end of my first week. My wife and daughter are near the end of their second week. It has gone the way Brewer said it should go. The first has been worse then the second week not so bad. I would describe it as doable, but not much fun. It is more of everything. More fatigue, more malaise, more body aches, more irritabillity. We all felt worse immediately upon using the Chelating PX. Brewer has tried to tweak the protocol so it is tolerable and you can stay the course. Previously doing the Ampo B twice a day was too overwhelming for patients.

    One explanation, of course, would be that CFS patients respond poorly to any medication, but my feeling is that there really is a die off going on. I have sprayed an endless array of medications in my nose over the years, but it never felt anything like this.

    Have you started on Grant's protocol? If so, how has it been?



    I think so too ifish and I need to incorporate this into my protocol.
    How are you feeling overall ? Do you feel this protocol is helping you ?[/quote]
  17. cigana

    cigana Senior Member

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    I don't see anything wrong with this as an idea. We know the acute levels required to produce easily measurable pathological abnormalities. We don't know the effect of chronic long-term exposure at lower levels. Nor do we know how chronic exposure interacts with bacteria, genetics, environmental polutants etc. It certainly explains how CFS seems to occur in outbreaks but not in an infectious way, it's consistent with the very common sinus problems found in pwc's.

    If chronic sinusitis caused by fungal infection is well known to cause chronic fatigue, I don't see a big problem in going one step further and suggesting that under certain conditions it could contribute to chronic fatigue syndrome.
  18. globalpilot

    globalpilot Senior Member

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    [/quote]

    I'm 10 days into it and I'm afraid I don't notice an improvement yet.
  19. soulfeast

    soulfeast Senior Member

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    [/quote]

    Ifish,

    Did he start with Chelating PX then Ampho B twice a day? Then due to reactivity, he decided to have patients dose the Chelating PX in AM then Ampho B in PM. Do you know why he chose to separate the biofilm "buster" so far away from the anti-fungal?

    I was talking with my new ENT about this and he was thinking this would not be as effective as dosing one after the other, so wondering why not both together once a day? Did Brewer give you any insights into this dosing schedule?

    Thank you!
  20. Ifish

    Ifish

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    He tried a variety of combinations. I do know that Amph B twice day was too much. I am sure he advises against doing the biofilm buster close in time to the ampho B. He stated that ampho B binds with a number of compounds including EDTA. He thinks some of his early treatment failures might be due to this issue. He stated that the ampho B must be at least an hour away from anything else. There was alot of trial an error in his first 200plus patients, so my best advice is to stick with his method.

    Ifish,

    Did he start with Chelating PX then Ampho B twice a day? Then due to reactivity, he decided to have patients dose the Chelating PX in AM then Ampho B in PM. Do you know why he chose to separate the biofilm "buster" so far away from the anti-fungal?

    I was talking with my new ENT about this and he was thinking this would not be as effective as dosing one after the other, so wondering why not both together once a day? Did Brewer give you any insights into this dosing schedule?

    Thank you![/quote]
    soulfeast likes this.

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