Detection of Mycotoxins in Patients with CFS

[slayadragon]

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?

Ritchie Shoemaker is a recently retired mold doctor who has run his own panel of tests on something like 6,000 patients. He frequently looks at family members who are living in the same bad house, where one person is sick and the other is not. His belief is that whether people get sick with exposures is highly determined by HLA DR genotype.

http://www.survivingmold.com/diagnosis/lab-tests

Hopefully at some point, this work will be published in the literature. It would be really helpful if it were.

I'm not sure how the study of mycotoxins in urine from spouses who have shared environments would be especially helpful, even if it is true that exposures are a cause of CFS. For instance, if the exposure that made you sick was in your workplace, then I would imagine that your husband had expelled all of those toxins a long time ago and that his urine would now come up as negative. If your current home is problematic, then I would imagine that your husband's urine would come up as positive, since his body would be working to expel the mycotoxins as soon as they came into his body.

Neither of those findings would shed any light on what we presume to be a possible cause of CFS -- a body that is inefficient at expelling mycotoxins and thus that has large quantities of them sequestered, releasing them only gradually over time.

I would guess that the main difference between someone with CFS and someone healthy, living/working in a bad building, is that the quantity of toxins that came out in the CFS sufferer's urine would be relatively small in comparison to the amount that came out in the healthy person's urine. But this test does not measure quantity present, only +/-. So I'm still not sure what the point would be.

I'm not familiar with any tests that will measure presence of mycotoxins in the body other than this urine one. Shoemaker's tests look at the status of various cytokines and hormones in the system, with the belief that they are altered in specific ways amongst people suffering from mold illness.

 

[dannybex]

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?

I had heard it before in the past, and yesterday this is was in the description in the first listing that comes up when I googled his name:

"Dr.Joseph Brewer is an Infectious Disease physician located in Kansas City, Missouri. He has an interest in the clinical aspects of mold illness,..."

 

[dannybex]

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.

Hi Lisa,

Just not sure that the bolded part is true (as noted in my previous post). But again, I think it's a great step forward, a huge study, even if he does have an interest in mold...

 

[slayadragon]

Ah, I see. Here is the reference, in the March 9, 2012, newsletter of the Global Indoor Health Network newsletter:

"Please join me in welcoming our newest member. Dr. Joseph Brewer is an Infectious Disease physician located in Kansas City, Missouri. He has an interest in the clinical aspects of mold illness, disease associations, diagnosis and treatment."

Quoting from the newly published article:

>The study was conducted for 6 months from 1 February 2012 to 31 July 2012. Patients with chronic illnesses, many of whom were previously diagnosed with CFS, were seen in a private practice (JHB) which is a consultative outpatient infectious disease clinic in Kansas City, Missouri. Out of approximately 300 patients with chronic illness that were seen for routine follow up clinic visit, 112 met the criteria for a diagnosis of CFS as outlined by Fikuda, et al. in 1994 [4].

So what it sounds like to me is that once that Brewer got to know his co-authors and commenced doing this study, he decided to join this organization (which Thrasher in particular is heavily involved in).

Probably this was not a good idea, because it makes him sound like a high percentage of his patients had been attracted to him because he treated mold illness. Based on my previous knowledge of him, I don't think that was true. The people I know who were his patients all were just treated for viruses or Lyme disease (and were for the most part extremely skeptical of my own insistence that mold might be a factor). And I never observed anywhere else that Brewer had any interest in mold.

I will ask the authors of this paper to comment on the speculation that patients who knew that they had mold issues might have been attracted to Brewer because of his being a "mold doctor," and that this might have biased the percentage of patients that had mold issues. Based on the timeline that I see here though, I don't think that's what happened.

 

[aquariusgirl]

Quick question for the moldies on the board:
I ran a bunch of these Shoemaker tests a while back.. MSH, MMP9, VEGF, VIP etc
They were all fine. The only one that stood out was TGF-b1 8060 (344-2382) which was super high.
My ND says I have biotoxins based on shoemaker's visual contrast test...but she never purused the mold thing.
So I guess my question is if you are ok on most of these Shoemaker tests, could you still have a mold problem?

 

[slayadragon]

Quick question for the moldies on the board:
I ran a bunch of these Shoemaker tests a while back.. MSH, MMP9, VEGF, VIP etc
They were all fine. The only one that stood out was TGF-b1 8060 (344-2382) which was super high.
My ND says I have biotoxins based on shoemaker's visual contrast test...but she never purused the mold thing.
So I guess my question is if you are ok on most of these Shoemaker tests, could you still have a mold problem?

As a double-check, I'd like to verify what you mean by your comment that all the Shoemaker tests except TGF-B1 were fine. One thing that I know is that the MSH reference range from Lab Corp used to be much different than Lab Corp defines it now. That's because the vast majority of people getting that test now are people who suspect they have mold illness, and they thus all have really low numbers! Lab Corp took the position that all those people couldn't be abnormal, so they redefined the reference range so that numbers that used to be abnormal are now defined as normal. That may be the case for some of those other numbers as well. So I would want to double-check that your scores are normal against Shoemaker's recommendations for them, rather than just that the lab said that they were normal.

http://www.survivingmold.com/diagnosis/lab-tests

 

[slayadragon]

An article on the topic of mycotoxins in food from the Townsend Letter, that someone suggested I post.

http://www.townsendletter.com/Oct2012/against1012.html

 

[Forebearance]

Quick question for the moldies on the board:
I ran a bunch of these Shoemaker tests a while back.. MSH, MMP9, VEGF, VIP etc
They were all fine. The only one that stood out was TGF-b1 8060 (344-2382) which was super high.
My ND says I have biotoxins based on shoemaker's visual contrast test...but she never purused the mold thing.
So I guess my question is if you are ok on most of these Shoemaker tests, could you still have a mold problem?

I seem to remember that Dr. Shoemaker used to use a rule that you had to have a certain number of his basic panel of tests turn out abnormal (by his standards) plus the susceptible genetics shown by the HLA-DR test in order to be diagnosed with mold illness.

I am so grateful to Dr. Brewer and his colleagues for doing this study! What a relief to have someone finally doing studies on mycotoxins in CFS patients. I hope more studies will follow to clarify what is going on.

The last I heard of Dr. Brewer, he was one of the early adopters of Rich Van K's simplified methylation protocol, and was testing it out on his patients. That was years ago. So maybe he is the type of doctor who likes to be on the cutting edge.

More power to him!
Forebearance

 

[alex3619]

These findings might lead to possible biomarkers. The toxin results, if replicable, are markers, and potentially open up new treatment avenues, I am still in hospital so will look more into this when I get home.

Such findings are also consistent with other suspected ME biochemistry and markers. We have low NK cell function ... and NK cells fight mold. We have endotoxins which disturb liver detox ... so we have problems detoxing mold. As others have said, there is some association with genetic markers which implicate detox or immune faults.

This is early research, but very welcome. I first read about mold and ME in the early 1990s, but very few have been pursuing it.

It doesn't matter if these mycotoxins are causal or just associated - we have a lot to learn by pursuing this.

 

[snowathlete]

As others have said, a welcome study. We need to look at stuff like this and this is an intial study which will hopefully be followed up with the other checks that we need. Mold is a pathogen, same as a virus or bacteria and needs to be considered.

I used to be a little skeptical about mold, I think in part because some advocates had an approach that was a bit too forceful and actually turned me off being interested. But I later considered it myself and doing my own research, came around to the idea. Mold is a possibility because there are lots of opportunities for exposure, and we may even know it, or remember it if we did know. When I was at art college many years ago, I lived in a room that had terrible mold on the walls by the window. Really bad. I only remembered that when I thought a long time about possible exposures though because it didnt seem significant to me at the time.

I have had a mold panel done by De Meirleir (redlabs) - dont know the results yet. Don't know if the tests are comparable to these ones talked about in this study. Anyone know?

 

[slayadragon]

It looks like RedLabs does IgG tests for colonizing molds.

http://www.redlabs.be/documents/Request Form 08-10IMMUen.pdf

 

[Tristen]

If I do have a biotoxin illness, I think it's as much, if not more, due to bacterial and viral infections as it is to mold exposure.

 

[Hip]

Cort Johnson has just written an excellent summary of this mold study on his blog here:

Study Suggests Mold Exposure Can Cause Severe Effects in Chronic Fatigue Syndrome (ME/CFS)

Cort mentions that "The authors defined ‘water-damaged’ buildings broadly enough (leaky pipes, window leaks, roof leaks, plugged up drains…) that many people must have been exposed to one".

I think this very broad definition of water-damaged buildings (WDB) explains why so many ME/CFS patients in the study (90%) said they were exposed to WDBs. Under this definition, I would have to include myself as exposed to a WDB (we had a roof leak). I don't think this broad definition is particularly useful, as I imagine much of the general population will have probably been exposed to WDBs under this definition.

So this raises the question: when the study authors looked for their healthy controls who had not had any exposure to WDBs, how did they find them? It must be hard to find a person who has not been exposed to a WBD under this broad definition.

However, that aside, the fact that the study found 93% of ME/CFS patients had at least one mycotoxin in their urine, and none of the health controls showed these mycotoxins, is still very interesting.

 

[Hip]

If I do have a biotoxin illness, I think it's as much, if not more, due to bacterial and viral infections as it is to mold exposure.

My own view / hypothesis is that ME/CFS only arises when there is a combination of triggering factors, such as say mold exposure with a viral infection together. I think that somehow, these triggering factors act synergistically to produce ME/CFS.

By the same token, if you can remove at least one of the triggering factors, conceivably your ME/CFS may improve or even go into remission. It may not be possible to remove a virus once you have caught it; but you can extricate yourself from mold exposure.

 

[Sushi]

It looks like RedLabs does IgG tests for colonizing molds.

http://www.redlabs.be/documents/Request Form 08-10IMMUen.pdf

And UZ Brussels tests for HLA-DR: http://labogids.uzbrussel.be/H/HLAKL003.htm

Sushi

P.S. which are the worst genotypes on this test?

 

[Skyline]

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.
....

Rockstar post, thanks for that list!

 

[Skyline]

A lot of information on mycotoxins in this presentation - see protocol for eliminating them at the end:

 

[slayadragon]

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.

Attached to the linked thread is a booklet from RealTime Laboratories, providing details on these tests (including the costs). It's dated 2010 though, so things might have changed a bit.

http://locationseffect.proboards.co...tachmentpage&board=effect&thread=322&post=967

 

[slayadragon]

And UZ Brussels tests for HLA-DR: http://labogids.uzbrussel.be/H/HLAKL003.htm

Sushi

P.S. which are the worst genotypes on this test?

Generally, people think the multisusceptible ones are the worst.

Occasionally I've heard that the combination of Multisusceptible + Low MSH (which is 1-5 and not listed on this chart) may be particularly bad.

Some people with severe CFS have Mold Susceptible + Low MSH.

I've not seen everything, but I've yet to see anyone who didn't have either a multisusceptible gene or mold susceptible + low MSH have severe CFS.

http://www.survivingmold.com/diagnosis/lab-tests

 

[Sushi]

slayadragon

Are these the way the SNPs would appear in a lab report? I saw this chart but didn't know how to read it. I guess I am asking how multisusceptible would appear in the lab report.

Thanks,
Sushi
DRB1 DQ DRB3 DRB4 DRB5