Detection of Mycotoxins in Patients with CFS

[valentinelynx]

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.

Hi. Just some info. Cholestyramine, while used to treat high cholesterol, is not a statin. It is a resin that sits in your gut and absorbs things like cholesterol and presumably toxins in this case.

 

[dannybex]

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.

Don't get me wrong, I think it's a very important study, and also LONG overdue.

But having said that (and Lisa can correct me if I'm wrong), but these patients were from one clinic, and that clinic specializes primarily in chronic mold toxicity...so I'm not sure the studies high percentages can be extrapolated to a larger patient population.

90% of the patients at Brewer's clinic were found to be positive, but I'm guessing that the number might be lower if a larger number of patients (Fukuda) across the country were tested.

 

[Hip]

That's why I think the more interesting comparison would be to healthy controls who had been exposed to WDB.

Since healthy people are theoretically able to dump the mycotoxins quickly, they should have different results than CFS patients.

Yes I agree: it simply could be that CFS patients have much weaker detoxification abilities, so mycotoxins accumulate in their bodies. In which case, these mycotoxins are more likely to be innocent bystanders that do not have a major causal role in CFS.


I could not find any information as to whether mycotoxins such as aflatoxin or ochratoxin A bioaccumulate in the body. If they do not bioaccumulate, then presumably these CFS patients tested in the study must be continually exposed to mycotoxins, in order for these toxins to be detected in the urine.

Again, this potentially is of great significance, as if this study is correct, it could mean 90% of us are continually exposed to mycotoxins.

 

[slayadragon]

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.

That paper does not say that 90% of patients had been exposed to mold toxins. It says that 90% recalled having had some kind of water event in their home. And there is no comparison point for controls, so we don't know what percentage of the general population has had a water event in their home. Maybe it's the same 90%. So as far as I'm concerned, that's just a nonsense number that shouldn't have been reported in the paper at all.

The datapoint in this study that is interesting to me is the one suggesting that 93% (not 83%) of random CFS patients at a general CFS clinic run by an infectious disease doctor who previously showed no interest in mold had mycotoxins in their blood (when 0% of healthy controls showed this). I agree that this finding has the potential to revolutionize the understanding of this disease and look forward to more discussion, study and -- hopefully -- treatment/prevention resulting from it.

 

[Hip]

these patients were from one clinic, and that clinic specializes primarily in chronic mold toxicity...so I'm not sure the studies high percentages can be extrapolated to a larger patient population.

Dannybex, did you read somewhere that the clinic involved in this study, Dr Joseph H. Brewer's private clinic in Kansas, specializes primarily in chronic mold toxicity?

 

[slayadragon]

Yes I agree: it simply could be that CFS patients have much weaker detoxification abilities, so mycotoxins accumulate in their bodies. In which case, these mycotoxins are more likely to be innocent bystanders that do not have a major causal role in CFS.


I could not find any information as to whether mycotoxins such as aflatoxin or ochratoxin A bioaccumulate in the body. If they do not bioaccumulate, then presumably these CFS patients tested in the study must be continually exposed to mycotoxins, in order for these toxins to be detected in the urine.

Again, this potentially is of great significance, as if this study is correct, it could mean 90% of us are continually exposed to mycotoxins.

This I do agree on. My first reaction to this paper was that there could be at least two different explanations for the findings:

1) People with CFS have been exposed to more mycotoxins than their bodies have been able to detoxify effectively, and this has led to their becoming sick with the disease.

2) Having CFS causes people's detoxification mechanisms to become impaired, and this leads to their being unable to process toxins effectively (with just small amounts being released in the urine).

The idea that, regardless, the toxins are "innocent bystanders" seems a little less likely though. Even if it's just that people with CFS cannot process toxins effectively and thus are less able to withstand mold exposures than healthy people, that's still important in terms of treatment of the disease. Doctors still should be counseling them to get out of bad environments, if that's the case. This paper cites previous research suggesting that these toxins, if not eliminated effectively from the body, can be harmful. Just because a healthy body could deal with them doesn't mean that a CFS sufferer should ignore them! That's like telling a diabetic that because a normal person could eat sugar without harm, the diabetic should feel free to eat as much sugar as s/he wants.

Someone else suggested a third possibility to me today:

3) Due to their impaired immune systems, CFS sufferers are more likely to have aspergillosis or other fungal infections, and those internal fungi produce the toxins found in the urine test.

This seems possible to me. And while my guess (based on the stories of moldy home victims I've encountered) is that the fungal infections often establish themselves subsequent to exposures to bad buildings, there's not any literature that says that's actually the case. So in general, I think that more investigation into the role of fungal infections in CFS might be warranted, along with more investigation into toxic environmental conditions.

 

[slayadragon]

Don't get me wrong, I think it's a very important study, and also LONG overdue.

But having said that (and Lisa can correct me if I'm wrong), but these patients were from one clinic, and that clinic specializes primarily in chronic mold toxicity...so I'm not sure the studies high percentages can be extrapolated to a larger patient population.

90% of the patients at Brewer's clinic were found to be positive, but I'm guessing that the number might be lower if a larger number of patients (Fukuda) across the country were tested.

I've never heard that Dr. Brewer had anything to do with mold prior to his participation in this study. He is an infectious disease doctor who historically has focused mostly on viruses and treated with Valcyte and transfer factor.

 

[slayadragon]

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.

Not all water damaged buildings are created equal. Some have a lot more toxins in them than others. So if healthy subjects said that they had had exposure to a WDB, we still wouldn't know whether they had gotten the kind of toxic exposure that (this study suggests) the average CFS sufferer has gotten. That being the case, what would it have proved to have them included as a control group?

Everybody with experience in this field seems to agree that there are some people who can swim in enormous amounts of toxic mold and not be damaged by it, while other people who appear to be healthy upfront are brought down very quickly by even a relatively brief exposure to a bad environment. And while we might posit different explanations for why that might be (e.g. genetics, previous toxic exposure, nutrition), everyone seems to agree that the difference is detox capability. That being the case, I would imagine that a really good detoxer would show a lot of toxin in the urine during the exposure (tapering off to none once s/he got out of the exposure) while a bad detoxer would show a tiny amount of toxin in the urine during and after the exposure (with that small amount continuing for years or decades as the body very gradually removed the toxin).

This test does not measure amount though. It just indicates positive (any amount of toxin is present) or negative (no toxin in present).

That being the case, I'm not sure what helpful information we would get by including healthy people who had had an exposure in the study, even if we were effectively able to determine that they indeed had had an exposure.

 

[Hip]

Someone else suggested a third possibility to me today:

3) Due to their impaired immune systems, CFS sufferers are more likely to have aspergillosis or other fungal infections, and those internal fungi produce the toxins found in the urine test.

Yes, that is definitely a possibility too. I just checked, and Aspergillus can produce two of the toxins found in this study, namely: aflatoxin (found in 83% of CFS patients) and ochratoxin A (found in 12%).

 

[Hip]

Not all water damaged buildings are created equal. Some have a lot more toxins in them than others. So if healthy subjects said that they had had exposure to a WDB, we still wouldn't know whether they had gotten the kind of toxic exposure that (this study suggests) the average CFS sufferer has gotten.

I read that mold species that have very potent and nasty mycotoxins include: Stachybotrys, Memnoniella and Acremonium. These three species depend on damp cellulose material (wood, paper, cotton) for nutrition, and thus typically thrive in water damaged-buildings that contain plenty of wood, wallpaper, etc.

So it would seem that if the water damage occurs to areas of wood or wallpaper, you are more likely going to get these nasty mold species appearing.

 

[slayadragon]

I read that mold species that have very potent and nasty mycotoxins include: Stachybotrys, Memnoniella and Acremonium. These three species depend on damp cellulose material (wood, paper, cotton) for nutrition, and thus typically thrive in water damaged-buildings that contain plenty of wood, wallpaper, etc.

So it would seem that if the water damage occurs to areas of wood or wallpaper, you are more likely going to get these nasty mold species appearing.

Particularly attractive to these kinds of mold is drywall and many materials used as wall insulation (such as blown-in newspapers). These building materials were not used prior to the 1970s. Thus, the fact that toxic mold has become so much bigger of a problem than it used to be should not be a surprise.

 

[Tristen]

Hi. Just some info. Cholestyramine, while used to treat high cholesterol, is not a statin. It is a resin that sits in your gut and absorbs things like cholesterol and presumably toxins in this case.

That's right, thanks Val.

It makes a lot of sense to me looking at the entire course of my disease progression, that that I would have a genetic malfunction causing an inability to detoxify these toxins adequately. Whether the problem be primary or secondary is of little importance to me at this point.....I like the idea of some relief whilst awaiting other solutions.

 

[Hip]

The mycotoxin testing lab used in this study was RealTime Laboratories. I couldn't find any indication of the cost of their tricothecenes, aflatoxins and ochratoxin A test.

Some Other Mold Tests Available:

Genova Diagnostics:
IgE Mold — this panel includes: Alternaria tenuis, Aspergillus fumigatus, Candida albicans, Cladosporium herbarum, Curvularia lunata, Epiccoccum purpurascens, Fusarium moniliforme, Helminthosporium halodes, Mucor racemosus, Penicillium notatum, Phoma betae, Pityrosporum orbiculare, Rhizopus nigricans, Stemphylium botryosum, Trichoderma viride.

ARUP Labs:
Stachybotrys chartarum/atra Panel II

Viracor-IBT Labs:
Stachybotrys chartarum/atra IgE : at Viracor-IBT Laboratories.
Fusarium Proliferatum/moniliforme IgG : Viracor-IBT Laboratories

Quest Diagnostics:
Stachybotrys Panel I (37405)
Stachybotrys chartarum/atra IgA (17131)
TRICHODERMA VIRIDE IGA (90633)
STACHYBOTRYS PANEL II (10036N)
TRICHODERMA VIRIDE (M15) IGE (62679N)
FUSARIUM OXYSPORUM IGE (73262N)
Fusarium moniliforme (m9) IgE (6696)
FUSARIUM PROLIFERATUM (6696X)
Allergy Panel 11, Mold Group

Great Plains Laboratory:
IgE Inhalant Allergy Test — this panel includes: Alternaria, Aspergillus, Cladosporium, Penicillium.

The Doctor's Laboratory (UK):
IgE Allergy Profile 1 (Food and inhalants) — this panel includes: Alternaria alternata, Aspergillus fumigatus, Candida albicans, Cladosporum herbarum, Helminthosporium halodes, Penicillium notatum.

Biolab Medical Unit (UK):
Inhalant Allergy Panel — this panel includes: Penicilium, Alternaria, Cladosporium, Aspergillus.

Red Labs (Belgium):
Mold Panel — this panel includes: Candida albicans IgG, Aspergillus niger IgG, Penicillium chrysogenum IgG, Cladosporium herbarum IgG, Alternaria alternata IgG, Aspergillus fumigatus IgG

 

[Hip]

Note that aflatoxins are also found as a common contaminant in maize, so this is another source of these aflatoxins.

 

[globalpilot]

The cost of the Realtime urine mycotoxin test is $699 including shipping from within the US. If you're outside the US you pay for shipping the sample.

Regarding the mold antibody tests, I had a blood test done through Quest for less than $100. It tests IgG against 14 or 15 molds.

GP

 

[Nielk]

I just finished reading this thread and an idea came to me. what if they were to do a study on partners who live have lived in the same environment for a long time where one had CFS and the other would be a normal control?

My husband and I, for example, have lived in our house (which occasionally had water leaks in the basement) for the past 22 years. Furthermore, when I was still working, we worked in the same building.

We were both exposed to the same environment. I am ill and he is thank God fine.

I also have a question. Beside a urine test - which shows the toxins that are released, is there any other type of testing which can show the toxins that are currently in the body?

 

[slayadragon]

Note that aflatoxins are also found as a common contaminant in maize, so this is another source of these aflatoxins.

Yes, this is quite true. Certain foods are contaminated with mycotoxins, and for people who cannot detoxify them properly, this can be a real problem.

(Whether there are enough mycotoxins in foods to be problematic for healthy people who have not become sensitized to them, I'm not sure. I've heard that a number of years ago, the government vastly increased the amount of aflatoxin allowed in peanuts -- possibly leading to an increase in peanut allergies as a result -- and so it seems to be just another one of those things where our whole food supply has gone to crap.)

Note that the trichothocene-producing fungus Fusarium has been shown to grow in great quantities in the presence of the herbicide Roundup (used on Roundup Ready corn, soybeans, sorghum, canola and sugar beet). Thus, the non-organic versions of all of those products should be assumed to possibly be contaminated with trichothocenes. And since trichothocenes cannot easily be washed off and are stable until 500+ degrees F, this includes things such as soft drinks and spirits made with these ingredients as well.

The popular blog "Bulletproof Executive" has at the base of its diet recommendations the importance of avoiding mycotoxins. (The author also suggests avoidance of moldy buildings.) Foods that are generally recognized as frequently being contaminated with one form of mycotoxin or another, and that he suggests that people avoid, include:

* Grains of all sorts. (Soaking the grain or removing the husk -- as happens with white rice -- may be helpful in getting rid of some of the toxins.)

* Most nuts. (Peanuts and cashews tend to have particularly large amounts of aspergillus contamination, but other nuts can be contaminated too. Soaking/sprouting nuts and then discarding the water prior to eating can be helpful.)

* Chocolate and coffee. (The blog author sells what he claims are low-mold, "upgraded" versions of these.)

* Non-organic meat, dairy and eggs. (When animals eat mycotoxin-contaminated feed, the mycotoxins do not vanish into thin air. They are stored in their tissues/fat and come out in their eggs and milk. The blog author is especially enthusiastic about the concept of "grassfed," with the feed being fresh rather than moldy. Grassfed does have other benefits too, of course.)

If this sounds like avoiding these foods would lead people to the "GAPS" diet or to a "Paleo" diet -- diets that many CFS sufferers have said are helpful for them -- then you're thinking in the right direction. Maybe these diets are helpful not because of the avoidance of certain foods themselves, but because of the avoidance of mycotoxins commonly contaminating those foods? (Note there are a bunch of agricultural studies showing that trichothocenes can cause intestinal permeability in animals.)

http://www.bulletproofexec.com/how-your-house-can-make-you-weak/

http://www.bulletproofexec.com/remove-toxins/

http://www.bulletproofexec.com/mycotoxins-in-america/

 

[slayadragon]

The cost of the Realtime urine mycotoxin test is $699 including shipping from within the US. If you're outside the US you pay for shipping the sample.

Regarding the mold antibody tests, I had a blood test done through Quest for less than $100. It tests IgG against 14 or 15 molds.

GP

IgG antibody tests look for whether people have recently had exposures to the molds that are being tested. So what this test really is doing is serving in the same fashion as an ERMI test -- to try to determine whether possibly dangerous molds are present in the environment.

I've heard of a number of people living in moldy houses who have had IgG numbers to particularly problematic molds such as Stachybotrys come up really high, and so I think it's possible that the test may have some validity to it.

It doesn't have anything to do with mycotoxins though. It only is related to recent exposures to the molds that make the mycotoxins.

Also, I'm not sure how quickly those numbers come down. So if people have moved from a bad house to a better one, their IgG levels may still be high.

 

[globalpilot]

I'm more interested in whether I have molds residing in my gut (and possibly sinuses, nasal passages). I've been interested in this since the beginning of my illness over 10 years ago actually but had nowhere obvious to turn for help.

Elevated IgG represents long term chronic infection (if it is very elevated). IgM is recent exposure.

This could be a very worthwhile test for those who are in a position like me and feel they may themselves be infected.

 

[slayadragon]

I'm more interested in whether I have molds residing in my gut (and possibly sinuses, nasal passages). I've been interested in this since the beginning of my illness over 10 years ago actually but had nowhere obvious to turn for help.

Elevated IgG represents long term chronic infection (if it is very elevated). IgM is recent exposure.

This could be a very worthwhile test for those who are in a position like me and feel they may themselves be infected.

For molds that colonize the body, this does make sense. Some of the molds that are tested for (including Stachybotrys) don't colonize though. And if people are living in a bad environment, it would be difficult to know if the IgG levels were elevated as a result of just exposure to the spores in the air or as a result of colonization.