Detection of Mycotoxins in Patients with CFS

[taniaaust1]

Hold on, something seems not quite right about this study on mycotoxins in CFS: the authors claim that: "Exposure histories indicated current and/or past exposure to water-damaged buildings in over 90% of cases".

Now I don't dispute that mycotoxins may precipitate CFS, but is it really the case that 90% of CFS patients have been exposed to water-damaged buildings?

Can we have a quick survey of the people here: who has been exposed to a water damage-building? Usually the moldy smell is all too apparent when there is a mold infestation. I for one have not been exposed to any water damage-buildings or mold infestations, as far as I am aware.

I have severe ME and lived for 22? years I think it was in an extremely water damaged building with severe mold issues at times (my house would even make some of my visitors start to cough and complain about mold smell.. interestingly.. many of my visitors could smell it more then I could, I guess I got used to it). Just before I recently moved out.. a contractor had recommended the gov housing agency I rented this house from to actually replace the whole roof rather then just patching it up again as had been done several times before (stupid housing agency thou just went and patched it up yet again.. so now the new tennet is living in this place). . There was water marks in several areas where water had been running in the roof and then down into the walls. (it used to then end up pooling up between the cracks of my wooden floor boards.

 

[Dufresne]

i was neg on VCS test took early on, he says only 80% show pos on VCS, toxins could go to another place.

A small detail, but Dr. Shoemaker reports in Surviving Mold that 92% of his patients with biotoxin illness test positive by VCS.

 

[Dufresne]

I wrote to Dr. Brewer about the rumors that the study was biased due to the possibility that he was considered a "mold doctor." Here is his response, which he allowed me to share publicly. I hope that others reading this will feel free to share it as well.

***

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

Great job getting this, Lisa. There have been a number of bloggers and forum posters tempering their position because of this concern.

 

[katcoff]

Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome

Joseph H. Brewer, Jack D. Thrasher, David C. Straus, Roberta A. Madison and Dennis Hooper

Abstract: Over the past 20 years, exposure to mycotoxin producing mold has been re...cognized 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.
http://globalindoorhealthnetwork.co...tients_with_Chronic_Fatigue_Syndrome_2013.pdf

Interesting. I first got CFS in the 1970s in college. At the time, I was living in an old off campus dorm in NYC. It was winter. I was on the first floor, the floors were cement and the place was very dank. A dorm neighbor of mine also got CFS. The mold thing makes sense as a factor then, but unless this is some super strain I don't understand how it could live in my body over 40 years. By the way, the other guy in the dorm recovered from it after a while but I didn't.
I also got sick suddenly, with a flu-like illness.

 

[slayadragon]

Interesting. I first got CFS in the 1970s in college. At the time, I was living in an old off campus dorm in NYC. It was winter. I was on the first floor, the floors were cement and the place was very dank. A dorm neighbor of mine also got CFS. The mold thing makes sense as a factor then, but unless this is some super strain I don't understand how it could live in my body over 40 years. By the way, the other guy in the dorm recovered from it after a while but I didn't.
I also got sick suddenly, with a flu-like illness.

Mycotoxins are poisons. They are just chemicals -- no more alive than the chemicals that are used, say, as pesticides.

Molds that make poisons can be present a) inside moldy buildings, b) in the outdoor air (resulting from moldy sewage or moldy crops), c) on contaminated foods (such as peanuts or corn), or d) growing in one's own body. It's unclear which of these sources the mycotoxins in the CFS study came from.

Apparently, some people's bodies are more able to expel these toxins than other people's bodies. This could be why some people who are exposed to a moldy building do not get sick (because their bodies rid themselves efficiently of the toxins) while other people get sick permanently (because they never get rid of the toxins and their poisoned bodies are unable to efficiently fight off other immune challenges such as viruses).

 

[dannybex]

Great job getting this, Lisa. There have been a number of bloggers and forum posters tempering their position because of this concern.

Yeah, I was one of them, due to brain fog and sloppy googling.

By any chance Lisa, did Dr. Brewer talk about how he's treating these patients?

Thanks!

 

[slayadragon]

I'm not sure what kind of treatment Dr. Brewer is pursuing or considering for his patients.

Here is a new blog article on this topic from Patient Advocate Chris Cairns.

http://cfspatientadvocate.blogspot.com/2013/04/mycotoxins-and-mold.html

 

[dannybex]

Thanks Lisa for the link. Very interesting about the various probiotic strains that help to inhibit or absorb various mycotoxins...

 

[Ember]

According to Dr. Cheney, “There is no clinical difference between Chronic Inflammatory Response Syndrome due to water-damaged buildings and Chronic Fatigue Syndrome....” (Paul Cheney Seminar - Part 2 at 25:50).

 

[slayadragon]

The full quote from Cheney:

>This is Dr. Shoemaker’s paper, which is going to be an important one. He just published it this week actually, using nasal VIP on 20 patients who had what he calls Chronic Inflammatory Response Syndrome related to Water Damaged Buildings, because he’s a mold expert.

>By the way, there is no clinical difference between CIRS due to water damaged buildings and Chronic Fatigue Syndrome. We trade patients. I get his patients that he can’t seem to fix with mold, and he gets my patients that I can’t seem to fix because maybe they have mold. So we keep trading patients, and we can’t tell the difference between them.

http://www.survivingmold.com/docs/VIP_published_3_2013.pdf

Those who have FB can read my notes from the presentation here:

https://www.facebook.com/lisa.petrison/posts/4530144744041

 

[MNC]

Interesting. I first got CFS in the 1970s in college. At the time, I was living in an old off campus dorm in NYC. It was winter. I was on the first floor, the floors were cement and the place was very dank. A dorm neighbor of mine also got CFS. The mold thing makes sense as a factor then, but unless this is some super strain I don't understand how it could live in my body over 40 years. By the way, the other guy in the dorm recovered from it after a while but I didn't.
I also got sick suddenly, with a flu-like illness.

I think it's like allergies. They may last forever once the immune system overreacts to some exposure.

 

[katcoff]

I think it's like allergies. They may last forever once the immune system overreacts to some exposure.

I get that, but would the immune system cause mycotoxins to to be secreted into the urine? Somehow I doubt it.

 

[slayadragon]

I think it's like allergies. They may last forever once the immune system overreacts to some exposure.

When I was living in my moldy house, I developed an anaphylactic latex allergy. This was subsequent to doing a lot of self-injections where I pushed the needle through a rubber stopper on the bottle and then didn't switch to a different needle.

After a lot of mold avoidance and detox, the latex allergy went away. Supposedly latex allergies never do that. But then, most people don't do avoidance and detox to the extent that I have.

Now, my mold reactivity seems to be pretty much have gone away too. Or at least, there are very few mold toxins that bother me now. A few specific ones still are problems, but they are much less problematic than in the past.

So I'm going to suggest here that maybe the mold reactivity actually was not significantly different than the latex allergy -- that both of them were due to my body having gotten overly toxic in general and with regard to those specific toxins, until it went into overload with additional exposure, and that both of them were repaired through the process of detox.

But if all these "allergies" are driven by toxicity, this would suggest a different paradigm than the "mystery disease" paradigm that most allergists cling to. Like, maybe the solution would be not to try to "fix" the immune system by developing drugs to screw with it, but instead figure out how to get the toxins out.

 

[scarlet56]

Hello Slayadragon:

I was told you know alot about being exposed to mold with cfs...I was working on my shed the last couple of weeks and got exposed and have had terrible pins and needles and headaches for week or so...what can I do to get back where I was??

 

[aquariusgirl]

So what is teh treatment for mycotoxins? apart from avoidance?? thanks

 

[Tristen]

Hey Lisa,

You've obviously interacted with many people who have done Shoemaker tx Protocol. May I ask.....how much a difference in level of success do you see in those who have completed the tx, and done the VIP as well?

 

[aquariusgirl]

And where are the patients who are being treated by Brewer? How come we haven't heard from them?

 

[Sparrowhawk]

Bumping this thread.
Several good questions above.

We just found black mold in our house, which is small, so I've been on either side of the room with the mold for the past 18mos of being sick after my big collapse. So while it may not have been the root cause of my collapse, it may have, acording to the toxins theory, been a contributing factor to my inability to heal (eg low NK cell activity).

I know I am reactive because when I went into the room with the plumber I got dizzy and later had heart palpitations. I also have a history of previous exposure which I mentioned elsewhere -- aspergillosis in both my ears and a basement full of it when we lived on the east coast. So if indeed exposure is additive then that may be a factor as well. I've also been in some pretty toxic post disaster areas as well, heaven knows what I breathed in.

We moved out and remediation started yesterday. This business of half lives is interesting because I was hoping to feel better. But I brought all my bedding so maybe that's the problem.

 

[globalpilot]

I'm so sorry to hear this Sparrowhawk. I just had a major relapse as well and sure enough, my air conditoner had a blanket of black yuck in it. Going to send a sample in to be cultured. I'm sort of starting to come around after removing the a/c about 3 weeks ago.

I was already being treated by a mold literate doctor so thank goodness we're on top of it. But I developed symptoms I've not had before and it was very scary.

 

[Sparrowhawk]

Yikes but glad you found the issue, globalpilot. That is interesting about the length of time it is taking you to feel better, half life in action perhaps? Best to you for healing and thanks for the response.