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Mold toxins as a cause for ME/CFS?

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63
the fatigue specialist i see is concerned I might have mold toxins in my body since there’s visible mold in my home. I’m getting a mycotoxin panel done. Insurance doesn’t cover it (of course). Anyone have insights on clinical evidence linking mold toxins to ME/CFS? If I test positive, i might need to move, get an inspector to assess my new home before I rent it, etc.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
the fatigue specialist i see is concerned I might have mold toxins in my body since there’s visible mold in my home. I’m getting a mycotoxin panel done. Insurance doesn’t cover it (of course). Anyone have insights on clinical evidence linking mold toxins to ME/CFS? If I test positive, i might need to move, get an inspector to assess my new home before I rent it, etc.

In my mind, what separates ME/CFS from many other things that can cause illness and fatigue like viral hepatitis C, EBV, mold sensitivity, etc, is that only ME/CFS has delayed PEM, that can last for days or weeks, none of the others do to the best of my knowledge.

My PEM kicks in 48 hours after I physically do to much and lasts for 24 hours like clockwork. This is the definition of PEM from ME/CFS from the center for disease control (CDC)-

Post-exertional malaise (PEM)
Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.

PEM can be mitigated by activity management (pacing). The goal is to avoid PEM flare-ups and illness relapses by balancing rest and activity.
Source
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
In my mind, what separates ME/CFS from many other things that can cause illness and fatigue like viral hepatitis C, EBV, mold sensitivity, etc, is that only ME/CFS has delayed PEM, that can last for days or weeks, none of the others do to the best of my knowledge.

My PEM kicks in 48 hours after I physically do to much and lasts for 24 hours like clockwork. This is the definition of PEM from ME/CFS from the center for disease control (CDC)-

Source
A good number of people with ME/CFS and PEM got well from practicing extreme mold avoidance.

Dr Cheney has said that ME/CFS and mold illness are indistinguishable.
 

Hip

Senior Member
Messages
17,858
Anyone have insights on clinical evidence linking mold toxins to ME/CFS?

You may want to look up Dr Ritchie Shoemaker's CIRS (chronic inflammatory response syndrome), an illness he says is cause by exposure to biotoxins like mold. CIRS has similar symptoms to ME/CFS.

There are studies (by Dr Joseph Brewer) suggesting ME/CFS is linked to mold exposure in the home. But it's not clear whether mold exposure is just a risk factor for developing ME/CFS, or whether mold exposure produces its own illness of CIRS.

The treatment Shoemaker proposed for CIRS is different to regular ME/CFS treatments.

Some info about testing and treating for mold illness / CIRS give in the CIRS section of my roadmap. You might like to take the free online visual contrast sensitivity test detailed there, which is an indicator of CIRS.


ME/CFS is usually triggered by an acute viral infection (flu-like illness, gastrointestinal upset, or a sore throat); did you experience any such infections just prior to you ME/CFS appearing?



If I test positive, i might need to move, get an inspector to assess my new home before I rent it, etc.

I am not sure how valid these tests are, you might like to research the test you are taking.
 
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Wishful

Senior Member
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5,749
Location
Alberta
I believe that anything that triggers an immune response can trigger ME, so yes, exposure to molds qualifies. However, once triggered, avoiding whatever triggered your ME may not make any difference. Further exposure to the triggering agent might make ME worse than it otherwise might be, or it might not; it depends on the individual.

I think that testing for mold toxins or other such agents isn't the best option. The interpretation of results will be based on theories that may not be accurate, especially for anyone who doesn't perfectly fit the 'standard human' model that the theories are based on. Thus you might be prescribed treatments for tiny amounts of toxins or whatever that aren't actually doing you, as a unique individual, any real harm.

My suggestion: live in a different, mold-free environment for a few days or weeks, and see if that makes a difference. If it does, then you can try treatments for mold spores or toxins.
 

ljimbo423

Senior Member
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Location
United States, New Hampshire
I believe that anything that triggers an immune response can trigger ME, so yes, exposure to molds qualifies. However, once triggered, avoiding whatever triggered your ME may not make any difference. Further exposure to the triggering agent might make ME worse than it otherwise might be, or it might not; it depends on the individual.

I think that testing for mold toxins or other such agents isn't the best option.

I agree with this completely. I think there are many things that "trigger" ME/CFS but they are often not what is continuing to cause it. Although in some cases they might be. The the mold toxins might still be causing the original posters ME/CFS or they might not.

I heard a mold expert on TV a few years ago saying that 25% of the population has mold sensitivity to varying degrees. Some degree of mold is found in almost every home, often in very high levels from leaky roofs, skylights etc.

But most people don't get sick, even though they are exposed to these toxins and probably have them in their bodes.

I think this point is one thing that makes treating ME/CFS so very difficult and complicated. IMO the trigger is often gone but ME/CFS is till there. I certainly don't know what is best to do here but hopefully this will give the OP some things to consider as they move forward.
 

Dufresne

almost there...
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Location
Laurentians, Quebec
I heard a mold expert on TV a few years ago saying that 25% of the population has mold sensitivity to varying degrees. Some degree of mold is found in almost every home, often in very high levels from leaky roofs, skylights etc.

But most people don't get sick, even though they are exposed to these toxins and probably have them in their bodes.

Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome
Joseph H. Brewer,1,* Jack D. Thrasher,2 David C. Straus,3 Roberta A. Madison,4 and Dennis Hooper5
Author information Article notes Copyright and License information Disclaimer


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.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
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.

Mold is everywhere. I don't see how there were no mold toxins found in 55 healthy controls. Often people don't even know they are exposed to mold. It's often hidden in walls, air ducts, underfloor boards etc.

One thing I have learned for sure with this illness, is that studies are very often flawed.

Each of us have our own point of view, which I try not to look at as right or wrong, just a point of view. Very few things about ME/CFS can be proven BUT everyone is entitled to their opinion.

EDIT- I forgot to mention that another reason I feel that mold don't have to cause illness is because I live in a mold riddled apartment with a leaky skylight and have for 15 years.

Before I moved in I had severe ME/CFS and was mostly bedridden for 6-8 years. Since I moved in I've improved my severe ME/CFS to mostly mild. So the mold in my apartment didn't make me worse or stop me from improving from having severe ME/CFS to mostly mild.
 
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Hip

Senior Member
Messages
17,858
EDIT- I forgot to mention that another reason I feel that mold don't have to cause illness is because I live in a mold riddled apartment with a leaky skylight and have for 15 years.

Not all mold species are toxic.

And not everyone has a susceptibility to mold. According to Shoemaker, only about 25% of the population have the HLA-DR mold susceptibility gene.

In order to be affected by mold, you would have to have a major growth of a toxic species, like the nasty Stachybotrys species, and have the susceptibility gene.

So it is certainly possible to be exposed to mold and not have any ill effects.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Not all mold species are toxic.

Yes, good point.

And not everyone has a susceptibility to mold. According to Shoemaker, only about 25% of the population have the HLA-DR mold susceptibility gene.

This is my understanding too. The expert on mold I saw on TV a few years ago said that about 25% of the population had mold sensitivity too.

So it is certainly possible to be exposed to mold and not have any ill effects.

Yes and I also think that it's possible for some people to have their ME/CFS triggered by mold sensitivity or even it being an ongoing cause of their ME/CFS.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Not all mold species are toxic.

And not everyone has a susceptibility to mold. According to Shoemaker, only about 25% of the population have the HLA-DR mold susceptibility gene.

In order to be affected by mold, you would have to have a major growth of a toxic species, like the nasty Stachybotrys species, and have the susceptibility gene.

So it is certainly possible to be exposed to mold and not have any ill effects.

Dr Shoemaker's HLA DR explanation has come under attack in more recent years due to the fact that haplotype distribution is very much tied to ethnicity. So what proportion of the American population would be susceptible? I read the following @ biotoxinjourney.com:

Apparently, HLA-DR testing has fallen out of favor. In 2017, Dr. Sonia Rapaport presented at the International Conference on Chronic Pathologies. At 10:30 in that presentation, she discusses the fact that the number of people that have a susceptible haplotype is much higher than the 24% reported by Dr. Shoemaker. Race, country, and ethnicity all play a role. For example, 90% of folks in Belgium have at least one “bad” halplotype. Given this, she seriously questioned the usefulness of HLA-DR testing.


Below Sean also points out that in the 2016 Irvine Mold Conference that Dr. Shoemaker himself commented that HLA-DR testing is questionable. I don’t have those videos, but I do have notes that others took of the conference. At that time, Dr. Rapaport was already looking into HLA-DR.

And from Dr Shoemaker's site survivingmold.com:
Based on Dr. Shoemaker's data, in normal populations compared to international registries of gene frequencies of HLA DR, we know the frequency of mold illness-susceptible patients approximates 24% of the normally distributed population. Almost a quarter of the normal population is genetically susceptible to chronic mold illness. Three quarters isn't.

Shoemaker carefully states "international registries" but makes no mention of the fact that most of his patients come to him from somewhere in the US or some other western country and that this may skew his HLA DR implications.

When I did that test years ago and I spoke to the fellow answering the phone at LabCorp he said he didn't understand why Shoemaker was making such a big deal about HLA DR as the haplotypes he impugns are "essentially all of them." I didn't question further on this but I'm assuming he meant that almost everyone tested comes back as those "susceptible" types. Surely people testing at LabCorp are not all mold cases; actually most are likely organ transplant candidates. And this is an American lab so presumably most of their specimens are coming from Americans.

Shoemaker is not in the habit of eating humble pie. There's been a growing body of work on urine toxin testing to identify which are present, the binders that will work for each, and differing theories as to how the toxins got there. So while Dr Shoemaker prescribes Cholestyramine and Welchol to supposedly mop everything up, Dr Nathan and his bunch are matching binders to toxins and finding that Cholestyramine and Welchol won't work at all for many toxins.

These later developments are the result of Dr Brewer's work and the labs he uses. Dr Shoemaker responded in typical fashion with an article on his site:

https://www.survivingmold.com/legal...wer-nasal-fungi-anti-fungals-and-junk-science

Dr Nathan published his response on his site:

https://neilnathanmd.com/junk-science/

Cholestyramine never did anything for me, while s boulardii and NAC kick my ass pretty hard. According to Dr Nathan these mop up gliotoxin, which is the mycotoxin he finds the most frequently. Dr Nathan has also said that he no longer treats for MARCONS, and that treating for mold in the sinuses brings about far better results.

I don't think Shoemaker has tweaked much in his theories over the last 10 years. I think Dr Nathan and Dr Brewer are necessary updates.
 

Hip

Senior Member
Messages
17,858
Dr Shoemaker's HLA DR explanation has come under attack in more recent years due to the fact that haplotype distribution is very much tied to ethnicity.

Yes, I have read here that HLA DR testing for mold illness is being questioned. According to Shoemaker, if you have the symptoms of mold illness, but do not have the a susceptible HLA DR types, then they are not diagnosed with mold illness / CIRS.

These are the diagnostic criteria for CIRS used by Shoemaker:
To warrant a diagnosis of CIRS, the following criteria should be met:

1. History, signs, and symptoms consistent with biotoxin exposure. In cases of mold toxicity, history should include exposure to toxin-producing molds as documented by the EPA-approved ERMI test. In other cases (microcystin, ciguatera, etc.), history should include likely exposure or laboratory evidence of exposure.

2. A genetic predisposition to biotoxin-related illness based on identification of an HLA susceptible haplotype.

3. Abnormalities documented by Visual Contrast Sensitivity (VCS) testing.

4. Biomarkers consistent with the neuroimmune, vascular, and endocrine abnormalities that characterize CIRS. If you have a history consistent with biotoxin exposure, a susceptible genotype, and an abnormal VCS test, you are very likely to show the laboratory abnormalities seen in CIRS. Major and minor criteria are a work in progress.

I wish some university research team would investigate Shoemaker's work, to see what can be replicated and what cannot. I don't think any of his work has been replicated by independent labs or research teams.



There's been a growing body of work on urine toxin testing to identify which are present, the binders that will work for each, and differing theories as to how the toxins got there. So while Dr Shoemaker prescribes Cholestyramine and Welchol to supposedly mop everything up, Dr Nathan and his bunch are matching binders to toxins and finding that Cholestyramine and Welchol won't work at all for many toxins.

Very interesting. Do we have any info about which binders Dr Nathan uses for specific mycotoxins?
 

Dufresne

almost there...
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1,039
Location
Laurentians, Quebec
I wish some university research team would investigate Shoemaker's work, to see what can be replicated and what cannot. I don't think any of his work has been replicated by independent labs or research teams.

Yes, and if there were any validation patients would then start trying mold sabbaticals in greater numbers. I'm pretty sure the majority of ME patients would find mold is playing a part in their illness. There are very few that have done extreme avoidance and said it did nothing for them. And we're talking about a diverse bunch from acute to gradual onset, to CCVI cases, to Lyme, etc.

It's worth noting Dr Shoemaker was finding abnormalities in leptin, C4a, and TGF-b before Dr Younger and others would go on to "discover" them in ME/CFS. Not replication, but perhaps a bit of validation after a few highballs.

I see so many little bits of research scattered over the years that explain my illness. However these hits almost never turn into further research and therefore don't make it to the point of drug testing and solid theories. And even when they do follow up on them you end up with 10 years of Rituximab entertainment; good for a laugh, but I'm glad I had my own plan.
 
Messages
63
OP here. The test my fatigue doctor is ordering is a mycotoxin profile (urinalysis) from Real Time Labs. I’m starting to doubt whether it will be helpful due to issues of accuracy etc.

I asked my doctor before if I need this test or if I should just move to a new place that passes a mold inspection and he was adamant I get this test. It’s $400.

I’ve lived here for over a decade. My fatigue symptoms only began earlier this year. Main symptoms:

Non-restorative sleep, Fatigue, dyspnea, yawning, nausea, dizziness, headaches, sore side of left shin, muscle weakness, irritability, loose and frequent BMs.

I read for mold to be harmful, the patient needs to have the HLA-DR gene. 25% of the population has this gene. LabCorp offers the test and it’s probably much cheaper than $400 for me with insurance. Does it make more sense to get the gene test done first?

I took the VCS test online last month and scored fine so this suggests I don’t have visual contrast problems, which are common if you have a mold toxicity issue, from what I’ve read.
 
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Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
I'd forgotten that the newsletter link I provided above is more about detox pathways, and not really about binders. Here is a list of which binders Dr Nathan suggests for which toxins.

Ochratoxins: cholestyramine, Welchol, and activated charcoal
Aflotoxins: charcoal and bentonite clay
Trichothecenes: charcoal and probably chlorella and clay
Gliotoxins: clay, NAC, s. boulardii.