• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Detection of Mycotoxins in Patients with CFS

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
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
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
This is an extremely important study. What it means is that either a) people with CFS cannot process mycotoxins (toxins made by molds) and thus are collecting them in their systems or b) exposures to mycotoxins are causing or contributing to their getting CFS.

In light of this study, I think it will be hard for "CFS doctors" to continue to ignore toxic mold as a relevant factor for their patients. Even if mold is not "the cause," it is definitely something that people with this disease should be making an active attempt to avoid.

Straus (a professor at Texas Tech) is likely the leading researcher into toxic mold in this country. Brewer is a recognized CFS doctor. Thrasher is a toxicologist who has published a lot on toxic mold. So this is a legitimate scientific paper, published in a recognized journal.

Please share.

Lisa Petrison, Ph.D.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Thanks for posting this Lisa. I just did the tests for this. Results pending, prolly another 2-3 weeks. I'm hoping there is something to this for me since it's fairly easy to treat. I've of course moved into a mold free enviro, and have treated all infections possible at this point.

Best,

T
 

adreno

PR activist
Messages
4,841
Thanks for posting this Lisa. I just did the tests for this. Results pending, prolly another 2-3 weeks. I'm hoping there is something to this for me since it's fairly easy to treat. I've of course moved into a mold free enviro, and have treated all infections possible at this point.
Hi Tristen, which tests did you do for this?

Would yeast/fungi on a stool test have anything to do with this?

What's the treatment for this; standard anti-fungals?
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
Hi Tristen, which tests did you do for this?

Would yeast/fungi on a stool test have anything to do with this?

What's the treatment for this; standard anti-fungals?

Hi Adreno,

I did all the Shoemaker tests for biotoxin illness. Only ones I remember was the HLA-DR (genetics), and the MSH (Melanocyte Stimulating Hormone). There were several others.....13 vials of blood. Lisa would know more on this.

The treatment to remove backed up biotoxins is one of the statins. I believe Cholestyramine (sp?). This alone doesn't heal the problem, but should bring some relief. Healing the problem would be removing the source of biotoxins, which for me has most likely been infections as well as mold exposure.
 

MNC

Messages
205
This is what Erik Johnson, an Incline Village survivor, has been saying for all these years to everyone and nobody listened. His persistance and extraordinary work made the WPI to finally look into it and finally this has come out.

He moved to the desert in Nevada and avoided mold completely ever since, and he recovered and has a life.

Please leave a message to Erik in his Facebook saying thank you if you know his story because he will be the anonymous hero and did everything all these years without receiving a cent or a thanks.

Here: https://www.facebook.com/erik.johnson.98434997
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
I am excited about this study and am looking forward to more research as I think mycotoxins are important in a lot of CFS cases, including my own. I also really hope that all CFS researchers and clinicians start taking mold into account and warn patients about the dangers of exposure.
There are a lot of questions that I hope that follow-up studies can help answer- here are a few off the top of my head:
1) As Sea mentioned, I would like to see the results of healthy controls that have been exposed to WDBs.
2) Similarly, I would love to see the results of CFS patients who do not think they have been exposed to WDBs
3) Theoretically CFS patients have trouble removing toxins from their bodies-- wouldn't that mean that very little mycotoxins should be released in the urine? A time-series would be interesting-- what are the mycotoxin findings in six months and a year after these first tests?
4) It seems surprising to me that the controls had zero mycotoxins since pretty much everyone has some mold exposure. I would love to know if there are other tests that could indicate past exposures, like blood or tissue tests.
5) Do mycotoxin levels correlate with any other potential CFS biomakers? It would be huge if we found that they correlated with NK cell function or VO2 at AT.
6) How do the commonly recommended detox procedures work for increasing mycotoxin excretion? i.e. Complete avoidance, saunas, methylation supplements, CSM, etc.

I wish I had the money to run some of these tests.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
I am excited about this study and am looking forward to more research as I think mycotoxins are important in a lot of CFS cases, including my own. I also really hope that all CFS researchers and clinicians start taking mold into account and warn patients about the dangers of exposure.
There are a lot of questions that I hope that follow-up studies can help answer- here are a few off the top of my head:
1) As Sea mentioned, I would like to see the results of healthy controls that have been exposed to WDBs.
2) Similarly, I would love to see the results of CFS patients who do not think they have been exposed to WDBs
3) Theoretically CFS patients have trouble removing toxins from their bodies-- wouldn't that mean that very little mycotoxins should be released in the urine? A time-series would be interesting-- what are the mycotoxin findings in six months and a year after these first tests?
4) It seems surprising to me that the controls had zero mycotoxins since pretty much everyone has some mold exposure. I would love to know if there are other tests that could indicate past exposures, like blood or tissue tests.
5) Do mycotoxin levels correlate with any other potential CFS biomakers? It would be huge if we found that they correlated with NK cell function or VO2 at AT.
6) How do the commonly recommended detox procedures work for increasing mycotoxin excretion? i.e. Complete avoidance, saunas, methylation supplements, CSM, etc.

I wish I had the money to run some of these tests.

Just because mold is common in buildings does not mean that people in most buildings are being exposed to high levels of the particularly damaging mycotoxins examined in this study.

My own experience is that although most buildings do have a bit of some sort of mold in them, the buildings out there that are bad enough to currently bother me (now that I'm mostly recovered) -- and that I think would have been bad enough to make me sick to begin with -- are few and far between. In fact, pretty much the only time that I have come into contact with these buildings is when I have gone out of my way to meet up with people who have severe CFS!

So the idea that 55 random people would not have been in a place where they got a large enough exposure to enough really bad mycotoxins to show up in their urine seems perfectly reasonable to me, based on my own experiences and on what I know about mold.

The people I've seen who have done this test have had mycotoxins continue to show up in their urine for a very long period of time, meaning years after getting out of the bad environment. (Interestingly, a few report that they did not have the mycotoxins show up in their urine until after they got out of the bad place, which is consistent with my belief that people's bodies only will effectively feel safe enough to let loose stored toxins after they get away from new exposures.)

My observation/belief is that people who live for years in a particularly bad environment can sequester enormous amounts of the toxins in their systems. Even though the body may be releasing small amounts in the urine, total body burden may be depleted very very slowly. It could take decades (or centuries) to get rid of it all.

I'd like to see more research to answer your questions as well.

Lisa
 

Hip

Senior Member
Messages
17,820
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.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
>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.

There was no moldy smell in the house where I got sick. Moreover, air testing revealed only a mild mold problem. If I had relied on those indicators, I would still be living there (or likely be dead by now). It only was when I had a remediator proactively open up the places where it seemed like mold _might_ be (behind fake paneling in the lower level of my home and behind two layers of drywall in the attic) was the mold problem identified.

I've found that a lot of the most problematic buildings that I've been in since then don't have an overt odor of mold either. Plus, toxic mold has been shown in studies to damage people's sense of smell, and so they may not be able to tell that it's moldy even if there is an odor.

However, I am surprised that 90% of patients said that they had histories of exposure to water damaged buildings. My own observation is that most CFS sufferers who are living in moldy homes are unaware of it until they start actively investigating. So I will have to try to find out more about how they got this information about their subjects.
 

globalpilot

Senior Member
Messages
626
Location
Ontario
This is what Erik Johnson, an Incline Village survivor, has been saying for all these years to everyone and nobody listened. His persistance and extraordinary work made the WPI to finally look into it and finally this has come out.

He moved to the desert in Nevada and avoided mold completely ever since, and he recovered and has a life.

Please leave a message to Erik in his Facebook saying thank you if you know his story because he will be the anonymous hero and did everything all these years without receiving a cent or a thanks.

Here: https://www.facebook.com/erik.johnson.98434997

I just befriended Eric and listened to a talk he posted regarding mycotoxins and persistent mold infections. It is well worth a listen to. Dr Irene Grant discusses her success in treating and testing for fungal infections. This is an avenue I've been wanting to pursue but couldn't find the right doctor. Now I have , thanks to Eric. Here is a link to the talk:
http://www.talkshoe.com/talkshoe/web/audioPop.jsp?episodeId=733733&cmd=apop – biofilm/mold
She uses an amph B lavage which breaks down mold biofilms.
http://www.talkshoe.com/talkshoe/web/audioPop.jsp?episodeId=733733&cmd=apop – biofilm/mold
I'd like to point out too she is not discussing the common candida that is most often talked about , but rather mold infections like asper, stachy etc.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
In reading the paper closely, this is what is says:

>Environmental histories of these patients were positive for exposure to WDB (many with visible mold) in over 90% of the cases tested, including residential and/or workplace. In the residential group, water damage to the basement was a common finding. However, other sources of water intrusion were noted during history taking, which included water pipe leaks, roof leaks, window leaks and plugged drains. In 24 patients, symptoms, which eventually became chronic, started within one year of the exposure in the WDB.

It doesn't say that the patients smelled mold, saw mold or had any other concrete evidence that mold existed. It just said that they were exposed to a building that had been damaged by water.

What I wonder is whether there are many people of any sort (healthy or sick) out there who haven't been exposed to a building that has had water pipe leaks, roof leaks, window leaks, plugged drains or an occasionally wet basement. Those events seem really common.

The idea that 90% of the population might say they had had exposure to such a building would not surprise me. Most of the time, these sorts of water events do not lead to the sort of mold infestation that would contribute to people getting this sick. Only very occasionally does really bad mold making really bad toxins in any large quantity establish itself.

That being the case, it does not surprise me that 90% of CFS patients would say that too. I personally don't think that means anything one way or the other. It's a basically irrelevant data point, that is only vaguely predictive of people's being exposed to a level of mycotoxins that would cause them to come up positive on that urine test.

People who are living in horrifically moldy homes (the kind that would expose them to enough mycotoxins to raise their urine levels) rarely think they're in an environment that problematic. Even when they know there's mold there, they sometimes block it out of their consciousness because it's too upsetting to think about about. And frequently they have no idea at all.

Most of the time though, if they thought hard enough, they probably could come up with a water event in their home, just as most other people could come up with a water event in their home. Those are just part of life.

So while I probably will write to the authors at some point to clarify some questions, I don't think that this datapoint is very interesting or noteworthy or relevant. It's the levels in the urine that make this paper interesting.
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
That's why I think the more interesting comparison would be to healthy controls who had been exposed to WDB. As Sea mentioned, their controls were "Healthy control patients with no known toxic mold exposures in water-damaged buildings were previously reported." Since many people have had some exposure to water-damaged buildings, they should be able to test controls who had similar exposures but are not sick. Since healthy people are theoretically able to dump the mycotoxins quickly, they should have different results than CFS patients. If they don't have different results, then that study would prove that people who were exposed to WDB have mycotoxins in their urine irrespective of their health situation.

That said, it's still very interesting that the vast majority of a theoretically random set of CFS outpatients had mycotoxins in their urine.
 

Hip

Senior Member
Messages
17,820
I don't think that this datapoint is very interesting or noteworthy or relevant.

On the contrary: if it were true that 90% of CFS patients were exposed to mold toxins, and that 83% of typical CFS patients have ochratoxin A in their urine (compared to 0% for healthy controls), then this data might totally revolutionize the understanding of the etiology of CFS, as these very high 90% and 83% figures suggest that these mycotoxins may well be the cause of CFS in a high number of cases.