International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Jesse2233, Mar 14, 2018.

?

Have you benefited from a comprehensive mycotoxin protocol? (FIR sauna / O2 or HBOT / Binders)

  1. I have tested positive for mycotoxins and have benefitted from a mycotoxin protocol

    2 vote(s)
    13.3%
  2. I have tested positive for mycotoxins and did not benefit from a mycotoxin protocol

    2 vote(s)
    13.3%
  3. I have not tested for mycotoxins but did benefit from a mycotoxin protocol

    2 vote(s)
    13.3%
  4. I have not tested for mycotoxins and did not benefit from a mycotoxin protocol

    2 vote(s)
    13.3%
  5. I have not tried a mycotoxin protocol

    7 vote(s)
    46.7%
  1. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,929
    Likes:
    5,082
    Southern California
    Interesting study in "Toxicology and Industrial Health" from 2009. The study is unique in that a comprehensive protocol was used instead of just one intervention. This of course makes it hard to tease out key variables, but does show the potential benefit of a comprehensive approach.

    The patients were defined as having mycotoxicosis but many ME / CFS / CIRS / Lyme / POTS patients have an underlying mycotoxin exposure as a driving cause of their symptoms. The patients in this study were greatly incapacitated and would likely qualify for a CFS diagnosis. 27 out of 28 were able to return to work after receiving treatment.

    Protocol:
    • 2 hrs daily supplemental oxygen
    • 30 minute sauna, gentle exercise, deep massage
    • Anti-fungals (Diflucan / Nystatin)
    • Various vitamin / mineral supplementation
    • Organic rotational diet / pure water
    • Immunotherapy resembling AIET
    Mycotoxins found in the patients included: Tricothecene, Ochratoxin, and Aflatoxin.

    These are now commercially testable via Great Plains MycoTox panel. I myself tested positive for Ochratoxin A and Aflatoxin M1

    Note: I've included a poll below to see if anyone here has experienced benefit from a similar protocol. I don't expect many to have tried AIET but there are likely many people who have used some combination of the other treatments. If you respond to the poll, please list your specific protocol and results in a reply.

    I've excluded the Shoemaker protocol from this poll as to not add any more confounding variables, but if you've had success with it please comment as well.

    Study abstract and link:

    More details on the protocol:

    And information on their recovery:

     
    Last edited: Mar 14, 2018
    Learner1, PatJ, Gingergrrl and 6 others like this.
  2. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,929
    Likes:
    5,082
    Southern California
    Dr William J. Rea, M.D at the Dallas Environmental Health Center lead the study.

    Some background on him:
     
    Learner1, Abha, Gingergrrl and 2 others like this.
  3. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,929
    Likes:
    5,082
    Southern California
    Some interesting patient testimonials on Yelp from the Dallas Environmental Health Center who likely used a protocol approximating the one in this study:

     
    Learner1 and ScottTriGuy like this.
  4. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,929
    Likes:
    5,082
    Southern California
    Learner1 and MastBCrazy like this.
  5. perrier

    perrier Senior Member

    Messages:
    696
    Likes:
    1,270
    Jesse,
    I looked at their programme, and it looks very interesting, and I would think it could benefit someone who is still mobile, and can look after himself. But for someone who is bed bound, I find the programme very demanding. But I don't know if it can address the real cause of this illness, this living death as I am not going to be calling it.
     
    Jesse2233 likes this.
  6. perrier

    perrier Senior Member

    Messages:
    696
    Likes:
    1,270
    Yes, I too would like to hear what Dr Davis says about this.
     
    Jesse2233 likes this.
  7. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,929
    Likes:
    5,082
    Southern California
    Yes I imagine results are quite variable based on patient profile and severity.

    Nonetheless even a bedbound patient might try the non-mobile elements (eg AIET, antifungals, O2)
     
    MastBCrazy and perrier like this.
  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,140
    Likes:
    4,628
    Toronto, Canada
    I just FedExed my urine to Great Plains this week for the Mycotox panel so will be able to share results in a few weeks.
     
    Learner1, PatJ, shannah and 1 other person like this.
  9. dreampop

    dreampop Senior Member

    Messages:
    248
    Likes:
    576
    The study looks pretty bad, in fact in looks awful. Uneliable patient recruitment (enviornmental health center), dubious diagnostics, random assortment of treatments (40% changed houses I guess). No controls. 100% response rate. Bad Journal. Poorly cited, almost entirely self cited tbh.

    The mold/mycotoxin area is especially grey, and in grey areas a lot of dubious medicine thrives.
     
    FTY, PatJ, ScottTriGuy and 1 other person like this.
  10. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,929
    Likes:
    5,082
    Southern California
    Fair points @dreampop

    Even if the study is flawed it’s still suggestive of potential benefit. And there are studies showing benefit of the individual treatments used (eg FIR, HBOT, binders, AEIT) as well as clinical experience and anecdotal patient reports
     
    Gingergrrl likes this.
  11. Nine lives

    Nine lives

    Messages:
    49
    Likes:
    40
    I am on a CIRS protocol (based on Shoemaker).

    Cholestyramine is the only Western medicine I tolerate in protocol. The benefits include now passing VCS (Visual contrast test) and strangely loss of tummy bloat. Perhaps CSM was binding endotoxins other than mold or I had intestinal mold. I am reducing my dose now and see what happens. (Note that I had done a year gut protocol specifically for the gut that had done nothing for the gut bloat).

    Also my serum iron is improving from 50 to 82 (when I was well it was 105). And TSH (which has been slightly suppressed since I first started testing at 40) seems to be working again - I had a TSH of 2.2 when slightly underdosed on thyroid medication.

    Aside from this protocol, I do believe the FIR sauna and liposomal glutathione helps remove mold via urine. I tried this pre protocol. But as HLA 4-3-53 I knew I would need help with biotoxin excretion, and thus the CIRS protocol.
     
    Learner1 and Jesse2233 like this.
  12. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,140
    Likes:
    4,628
    Toronto, Canada
    I received my Great Plains Laboratory results of their mycotox testing.

    Positive for:

    Ochratoxin A (2.01) (range: 1.2 - 5)
    Sterigmatocystin (.339) (range: .1 - 2.25)
    Zearalenone (1.71) (range: .5 - 2)

    Not sure how to proceed. Last fall I moved out of my house for 10 weeks and took chlorophyll and activated charcoal and noticed no effect on my health. My wallet took a hit subletting a condo.

    If the mold in my house is causing my ME, then would I have had 2 complete recoveries? (By complete I mean full on triathlon training and racing with zero symptoms.)

    I've lived here for 20 years, my first bout of (mild) ME in 2012. But now I've been sick since since Dec 2014 with more and worse symptoms.
     
  13. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,880
    Pacific Northwest
    A couple of weeks ago, I heard a lecture on mycotoxins from a scientist at Great Plains Labs. Copying from my notes here:

     
    ScottTriGuy likes this.
  14. bjl218

    bjl218 Brian Levine

    Messages:
    66
    Likes:
    35
    Chelmsford, Massachusetts
    @Nine lives, did you also remove yourself from a known moldy environment?
     
  15. bjl218

    bjl218 Brian Levine

    Messages:
    66
    Likes:
    35
    Chelmsford, Massachusetts
    Be careful with the cholestyramine (CSM). I've been on CSM for a while without much improvement. This may be because I'm still being exposed to mold. (I've moved out of my home for 2 months to see what happens, but there could always be other sources of mold in my life.) I'm seeing a Shoemaker practitioner for this. She's not a functional doc or naturopath so didn't check other things like heavy metals and nutritional status.

    I've since learned that I'm very low in just about every B vitamin (NutrEval). There are many possible reasons for this of course, but I wonder if one of them is that the CSM was binding to various nutrients. I'm now seeing a functional medicine doc (who discovered this) and I've reduced the CSM to 2x/day and I'm supplementing B vitamins and other nutrients.
     
  16. Nine lives

    Nine lives

    Messages:
    49
    Likes:
    40

    Yes- I did ERMI for my new house and levels came back in lowest 25%ile of homes. I had to show this to my mold doctor before he would prescribe the cholestyramine.

    I am pretty sure my mold hit came from a temporary apartment that I lived in for only 3 months.
     
  17. Nine lives

    Nine lives

    Messages:
    49
    Likes:
    40

    I did 3 months at 3x a day and have dropped down to 1 or 2x a day. I wonder also whether dropping cholesterol too low is a good thing. Thanks for the heads up on the B vitamins. Was that all Bs or any in particular?
     
  18. bjl218

    bjl218 Brian Levine

    Messages:
    66
    Likes:
    35
    Chelmsford, Massachusetts
    In my case, it was all B vitamins. But to be clear, I can't prove that it was the CSM that caused this. I hadn't been eating very well for a while so that is certainly a contributor. On the other hand, my NutrEval test specifically mentions CSM as being a cause of low folic acid (B9) and B12. These two and B2 are my most deficient according to the NutrEval. I did nothing to supplement those vitamins while on CSM. I'm trying to correct that now.

     
    Nine lives likes this.
  19. bjl218

    bjl218 Brian Levine

    Messages:
    66
    Likes:
    35
    Chelmsford, Massachusetts
    Are those actually positive values? Probably everyone will have some amount of mold toxins. There's mold everywhere in our environment. The values you reported look like they're in the "normal" range according to this lab. I would think that if your numbers were outside this range, it would then be considered "positive." In fact, all of those numbers (except for Zearalenone) are towards the lower end of the range.

     
    ScottTriGuy likes this.
  20. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,140
    Likes:
    4,628
    Toronto, Canada
    The report titles those ranges: "Common range of positive results" (vs 'common range of normal results')

    So I interpret that to mean that for those 3 I am 'positive'.

    I scored "0" on the other tests, so they were not even detectable.

    Does that make sense?
     

See more popular forum discussions.

Share This Page