Detection of Mycotoxins in Patients with CFS

[dannybex]

Uh, I didn't know that. Pseudoscience and quackery then? Maybe I should remove the video?

I wouldn't. I'd consider it a badge of honor to be accused of quackery by the ultimate quack, Stephen (I work out of my garage) Barrett, a man who's lost every case he's brought against so-called quacks.

Note this error from Barrett's report:

• In each of these cases, Campbell relied on junk science to support his diagnosis of "toxigenic mold exposure."
• No scientific literature supports a causal connection between mold exposure and the neurological diseases Campbell diagnosed."

The study posted at the beginning of this thread shows a connection. Barrett is unqualified to comment on almost all the cases/"quacks" he reports on. Just because Barrett calls someone a 'quack', doesn't make it so, as proven by the many court cases he's lost.

 

[sianrecovery]

Hey Sian,

I'm still not sure I'm interpreting the HLA stuff correctly. So you showed multisuseptability for biotoxin illness? Does mine appear to you to be saying the same? Did you do any Tx for this?

hugsss back at ya

Hi Tristen

I'm sorry to sound so completely pathetic, but my brain froze when it came to interpreting my results, so I deferred to others interpretation. I am attaching the rosetta stone doc. I wish I could help you make sense of yours, but its just one of those pieces of interpretation that doesn't come right for me. I cant attach my results because they wont upload as a word doc, but if you pm me your email I will send them and you can do a comparison.
In terms of treatment, I guess I have worked from the perspective of detox and avoidance, from a very amateur perspective. I never launched into the whole Shoemaker protocol, because I was going after other targets, like the protomyxzoa. Its kind of on the to-do list. But I found Scott's response to my email to him helpful - he suggested I don't fall into the habit of referring to it as the 'dreaded genotype' and making that a self-fulfilling prophecy. Shoemaker may or may not be right - but the patient populations tested remain small, and I have seen more than one person post that they have mold issues but their spouses don't - despite the fact the spouses tested as having the multi-susceptible geno.

 

[searcher]

Skyline -

He was ordering SPECT scans, which a lot of doctors in functional medecine would actually avoid due to radiation implications - also as I understand it that is not relevant to neuropathy diagnosis.

I think some ME/CFS docs use SPECT scans, although it's probably more common in research. It wouldn't so much for neuropathy as for understanding what part of the brain is not getting good blood flow. http://forums.phoenixrising.me/index.php?threads/spect-scan.12658/ has a good discussion of it. I think the Amen clinic uses it a lot to help understand what's physically going wrong in different so-called mental illnesses. The issue I see with it is that I think we pretty much all have cerebral hypoperfusion, so I am not sure what benefit we would get from the scan since it doesn't seem to be sufficient for skeptical doctors.

I wonder if Shoemaker had his license challenged? He orders a lot of tests based on theories that are not generally accepted (but I think are accurate.) I am appreciative of all the doctors who are prepared to take some risks for us, although I don't doubt there are some who are using the uncertainty surrounding this disease to take advantage of patients.

 

[slayadragon]

Thanks for your input Lisa. There are 2 for each listed, but since the result is identical, I only listed one of each (put both below). Yea, it appears to me that not all the genetic info is there. No idea what those with only a hyphen (-) means, but then there are blanks on the interpretation chart as well. Appears to me, that I fall most within the "multisusceptible". Anyhow the DRB1 & DQ would suggest this, as you say. Not sure what notation on the DRB4 your referring to, but I've listed the results below as read on the labs.

DRB1----*04:HTWY
DRB1----*04:UZPY
DRB3----DRB3 * -
DRB3----DRB3 *-
DRB4----*01:fvuu
DRB4----DRB4*-
DRB5----DRB5*-
DRB5----DRB5*-
DQB1 Allele 1----*03
DQB2 Allele 2----*03




I did the a.m. cortisol in mid afternoon, lol. The GP had to call the lab for the go ahead to do it that late.....so it is a later day level.

I did go through some years of being very sick and what felt like much more widespread inflammation. At that time I was so sick that too this day I am very surprised that a human body can live through being that ill. I didn't want to die, but thought that I was surely going to. That level of severity passed after 3-4 years. This experience matches what your saying about the MMP9 & C4a levels changing (I bet they were really high during that severe period). And it matches my experience with disease severity.

Sorry, AVP, Arginine Vasopressin (Antidiuretic Hormone)

Best,

T

So it looks like to me the two genes that you have are:

4-3-53
4-3

This does not make a lot of sense to me, since there is no such thing (at least on Shoemaker's chart) of a gene that is just 4-3. And I've yet to see anyone else have a gene that is not on his chart. (1-5 is not on the chart on the Surviving Mold website, but that is an error of the people who put together the site.)

But it sounds like you definitely have one multisusceptible gene (which is enough to suggest that you are susceptible to the toxins and especially likely to get CFS) and possibly two multisusceptible genes.

 

[Tristen]

Thanks very much Lisa. I'll take another look at my labs results.

Best,

T

 

[Tristen]

Thanks Sian, I'm with ya on the brain fog thing. Wish I could chalk it up to a just a temporary brain freeze, but suspect it's my norm, lol.

 

[acer2000]

Is there a reasonably up to date list of "good places" (ie sans mold toxin) that someone might try to go to see if they improve? I think at one point someone was keeping one.

 

[Skyline]

Is there a reasonably up to date list of "good places" (ie sans mold toxin) that someone might try to go to see if they improve? I think at one point someone was keeping one.

slayadragon created this resource (http://locationseffect.proboards.com/index.cgi). It's a good start.

I particularly appreciated this comment from Dr. Sarah Myhill:

The key to diagnosing mould allergy is the history and if patients are improved in a mould free or low mould environment then this is highly suggestive that moulds are a problem. In order to survive moulds have to get their water from air, therefore they do not exist either in very dry climates (which may be hot dry or cold dry), above three thousand feet where the air is too thin to hold sufficient moisture, or on sea fronts where the prevailing winds are onshore. Since moulds do not live in oceans, their spores are constantly blown in land.
Therefore, to diagnose mould allergy I currently recommend that people have a two week holiday in such a mould free environment. They may have already done this and not realised that their improvement was actually due to the control of their mould allergy and ascribe improvement to other factors such as freedom from stress, or sunshine, or whatever.

There are a lot of positive comments on the board for Yucatan (Mexico) - so I'm looking at places which have an Onshore Wind and that are relatively isolated from pollution there.

 

[Dufresne]

I’d really like to know what percentage of people from this site who test for their HLA DR come back as susceptible. I’d set up the poll if I knew how.

 

[citybug]

I happened to start Mold Survivors book right before this. One of Shoemaker's complaints is that most doctors don't do a history that asks about water damage, so it sounds like they did a very thorough history here. I read eric's stuff and didn't think I was exposed, but now i am thinking there was a water stain on some ceiling, basements, flat-roofed schools.
Sh says that the C4a inflammation is additive, goes higher with each exposure for the non-detoxifiers, with bad HLA-DR, so exposures add up. i was neg on VCS test took early on, he says only 80% show pos on VCS, toxins could go to another place.
Now maybe we can test more easily for biotoxin inflammation--high C4a and TGFbeta-1 (newer test). And HLA-DR to see if genetically unable to detoxify mold toxins (not tagging them with antibodies). I know I am a "dreaded" on his chart. Test is sometimes done for RA and I found it in my tests from a lyme doctor.
How many ME/CFS patients have done this test? Why don't CFS docs do it? I think we need a poll to see how many here are in Shoemaker's categories, and C4a rates etc. Seems those here are multi-susceptible. He calls it dreaded because not the simple patients, more likely to have everything found in ME/CFS, and more steps to correct.
C4a and TGFbeta show high inflammation. Would these 2 show if we have it? Low MSH and VEGF -can't sleep, no oxygen to capillaries, no aerobic energy production (and HPA related). Now he has VIP which can now correct some of this, after taking CSM as binder, and getting rid of sinus MARCoNS biofilm ,which also turns on cytokines all the time.
In Brewer's study I find most reality shaking that the same toxins are on the floor and in the patient's urine. I didn't know the toxins as well as the mold were lying around. These neurotoxins are like ciguatera, agent orange.
And now there is the ERMI test to check dust in your home. $165 at one place (just ordered) and $300 at mycometrics. At myco can send a swiffer cloth with dust. Lyme patients are doing these tests.
Though people with allergies may be more likely to be one of the non-detoxifiers, the allergy tests aren't the same thing. In the past Brewer has been one doctor who did antiviral treatments.
There is also a video by dr lisa nagy talking about mold from the environmental illness standpoint, and also sounding like ME, POTS, but without same protocol.
Shoemaker's books are really meandering so I took notes, but in Mercola talk and in his research he is all about evidence based medicine, and now has a training program for doctors. He wants availability of MSH to fix the most persistent problems of people like us. It used to be available and FDA needs to approve it.
Other doctors say virus triggers the cytokines, then we don't turn them off… maybe this is why? And makes other detox cycles broken?
I think the hard scientists would have trouble with the Brewer controls being tested at a different time, but if we all get the HLA and start tracking inflammation with these markers, we would get a sense of whether this is most of us, and not a separate category. Shoemaker calls it CIRS, chronic inflammatory something.
My HLA-DR is 4-3-53 multisusceptible and 17-2-52A mold. (looking at each number by directions in books).

 

[Tristen]

Prolly true for us "multi-susceptable" folks that we have numerous steps to correct in the process of treating biotoxin illness. I've taken those steps over the last 5-6 years having treated known infections and changing my environment. I moved from a very moldy place, treated (marginal) Lyme & Co, been on big gun anti-virals for CMV and reactivated EBV, and have spent a year doing methylation work. Seems a good time to treat bitoxin illness.

 

[slayadragon]

I think this is from Tristen:

>Appears that's me. Doc just called on my results and wants to see me right away. See her Monday, which is really fast for getting into her office.

>I believe this is true that there are more steps to correct, but I've done that. I've just spent the last 5 years correcting them. I moved from a very moldy environment, spent 2 years treating (marginal) Lyme & co, 1.5 years on big gun antiviral tx for CMV, and a year doing methylation tx. I've done it all, and much improved, but still sick. I'd say it's perfect timing to treat biotoxin illness. Anyhow, I'm hoping big time this is true.

While it's nice to see this paper in the literature, it does not get to what I think is a key issue for CFS patients: hyperreactivity to tiny amounts of biotoxins.

Similar to how some people react to tiny amounts of gluten or peanuts or latex, many/most/all CFS patients react to tiny amounts of mycotoxins in their environments. Acute reactions to certain mycotoxins (e.g. the ones from the kinds of bad environments where people get sick) can be particularly devastating.

While unfortunately there are no papers in the literature on this phenomenon, it's been reported consistently enough by CFS and mold illness patients that I think it's clear that it's a real phenomenon.

That being the case, insofar as people move from a really bad environment and don't get a big boost in wellness, I tend to suggest that they look to possessions that were contaminated in that environment to see if they could be having a continued negative effect. Doing a trial away from the suspicious possessions may be helpful in allowing people to know whether they are having an effect.

Getting rid of all possessions (or putting them in storage) tends to be really difficult for people. However, most of the people who have recovered from the illness as a result of addressing biotoxins do seem to go through this step.

At the very least, I would suggest getting rid of everything that can't be washed plus all clothing and bedding, washing everything else, and keeping the non-discarded things out of the sleeping area.

Another question is outdoor air. There are certain locations that are particularly problematic with regard to outdoor toxins, and it can be more difficult for people to recover in those environments. I don't know where in Northern California you live, but some of the spots reported to be particularly problematic are East Bay (e.g. Berkeley/Richmond/Oakland), Mountain View, Marin County, Sacramento, Fresno and Truckee/Tahoe.

Obviously it may be difficult or impossible for people to move from their current town. If the town is bad enough though, doing so may be worthwhile.

As I say, none of this is in the peer-reviewed literature, so feel free to ignore it if you like. A lot of case studies do suggest that there's something to it though.

Best, Lisa

 

[Tristen]

HI Lisa,

I got phobic about discarding anything potentially moldy when I moved. Very few things that had to come with me such as clothing has been through some very serious washing and drying. I burned and threw out lots of stuff. I burned a really expensive bed....even burned my beloved books. I was obsessed.

I think my environment outside the house was fine.....it was the house. So, I moved into a newer and much dryer place. I still live in the Redwood forest area, and we do have lots of fungi here.....but I've been extremely healthy the first 35 years of my life here, so it's doubtful that's an issue for me.

 

[slayadragon]

I've not gotten many reports on the northern California coast, with regard to the "Locations Effect." I'd like to go visit there myself.

Do you feel like you've made any progress health-wise since moving from the moldy place, or are you still just as sick as you were when you were living there?

 

[slayadragon]

HI Lisa,

I got phobic about discarding anything potentially moldy when I moved. Very few things that had to come with me such as clothing has been through some very serious washing and drying. I burned and threw out lots of stuff. I burned a really expensive bed....even burned my beloved books. I was obsessed.

I think my environment outside the house was fine.....it was the house. So, I moved into a newer and much dryer place. I still live in the Redwood forest area, and we do have lots of fungi here.....but I've been extremely healthy the first 35 years of my life here, so it's doubtful that's an issue for me.

But the fact that you moved from a moldy environment and discarded most of your stuff, and that you are living in an area that you suspect may be okay, is consistent with your only mildly elevated MMP9 and C4a levels. I didn't realize that was your history when I first looked at those test scores.

Thus far, my observation has been that if people take extreme avoidance far enough, they generally can get to some level of functional recovery and to start detoxing at a rapid rate. However, in some cases the amount of avoidance that needs to be obtained to get to that point is really ridiculous, and therefore not practical for most people.

In that case, I would focus on things such as restoration of gut ecology (e.g. with homemade kefir made with really good-quality milk), mycotoxin-free diet (see "The Bulletproof Executive" blog for details), and detox to the extent that you can tolerate it (e.g. juicing, coffee enemas, binders, sauna, Amy Yasko's stuff). VIP eventually might be helpful too.

Andrea Fabry's site has some good suggestions on this sort of approach, I think.

http://momsaware.org/

Unfortunately, this is a tough nut to crack. I honestly think that if the pharmaceutical companies would put their efforts in the right direction, they would be able to come up with some drugs that would help us to detox this stuff better. Maybe eventually they will move beyond the 19th Century illness paradigm ("bugs cause illness") to the 21st Century one ("toxins cause illness") and become more helpful.

 

[Tristen]

Thanks Lisa, awesome info. I made that move 2 years ago and I would bet that the MMP9 & C4a levels were much higher then.....maybe especially true since I did make an observable improvement from the move alone.

When my me/cfs became severe 10 years ago, I collapsed and had to go off on SS disability. In order to survive on disability, I sold my home, payed all my bills, and moved into a little trailer. I then became very severe and 95% bed bound. A few years later I realized the trailer had a non apparent leak that had saturated the entire ceiling. When I would leave for a few hours, then return, the trailer reaked of mold. My friend and her husband, both with Lyme, could not enter it without an immediate serious reaction. It wasn't just moldy, it was also chemicals they used to build those trailers. I moved into a newer apartment back in town where there's more sun (I was in the rain forest before). My new place looks, smells, and feels mold and toxin free.

Best,

T

 

[slayadragon]

Thanks Lisa, awesome info. I made that move 2 years ago and I would bet that the MMP9 & C4a levels were much higher then.....maybe especially true since I did make an observable improvement from the move alone.

When my me/cfs became severe 10 years ago, I collapsed and had to go off on SS disability. In order to survive on disability, I sold my home, payed all my bills, and moved into a little trailer. I then became very severe and 95% bed bound. A few years later I realized the trailer had a non apparent leak that had saturated the entire ceiling. When I would leave for a few hours, then return, the trailer reaked of mold. My friend and her husband, both with Lyme, could not enter it without an immediate serious reaction. It wasn't just moldy, it was also chemicals they used to build those trailers.

Best,

T

Based on my own experiences and what I've heard from other people, RV's can be amongst the worst of all possible places for mold reactive people to live. Most are built in such as way that mold is pretty much impossible to keep out, e.g. with buried wood in the roof or frame. (The exceptions are all-metal trailers like Camplite; fiberglass trailers like Casita or Scamp; or Airstreams.)

The chemicals in RV's are problematic on their own and may interact with water damage to create especially problematic biotoxins. I'm not sure if it's because only certain weird kinds of mold can grow on wood that is saturated with chemicals or because the mold converts the chemicals into some more dangerous form. (Mold is known to convert arsenic into a more dangerous form -- google "Gosio's Gas" -- and so the idea that it might do the same thing with PBDE's, formaldehyde, pesticides or other chemicals is not terribly far-fetched, in my opinion.)

Other places that (based on the stories that I've heard) may create especially bad mold toxins if they go moldy: pre-fab housing and buildings that have been treated with flea bombs.

 

[Tristen]

Based on my own experiences and what I've heard from other people, RV's can be amongst the worst of all possible places for mold reactive people to live. Most are built in such as way that mold is pretty much impossible to keep out, e.g. with buried wood in the roof or frame. (The exceptions are all-metal trailers like Camplite; fiberglass trailers like Casita or Scamp; or Airstreams.)

The chemicals in RV's are problematic on their own and may interact with water damage to create especially problematic biotoxins. I'm not sure if it's because only certain weird kinds of mold can grow on wood that is saturated with chemicals or because the mold converts the chemicals into some more dangerous form. (Mold is known to convert arsenic into a more dangerous form -- google "Gosio's Gas" -- and so the idea that it might do the same thing with PBDE's, formaldehyde, pesticides or other chemicals is not terribly far-fetched, in my opinion.)

Other places that (based on the stories that I've heard) may create especially bad mold toxins if they go moldy: pre-fab housing and buildings that have been treated with flea bombs.

Agree 100%. This was a wooden framed RV, and I'm not even going to tell you what I found when I pulled the flake-board ceiling from inside that RV. It was really bad and appeared a gruesome mix of mold and chemicals. This was after I had moved out of it and was looking to see if the trailer was salvageable......NOT!

 

[slayadragon]

A new paper by Dr. Janette Hope of Santa Barbara describing the basics of mold illness and treatment.

http://www.hindawi.com/journals/tswj/2013/767482/

 

[slayadragon]

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