Do Abnormal Mold Markers Really Mean Exposure to Mold/Toxins?

[Gingergrrl]

It's opened up many avenues of healing for me and I now feel it's my responsibility to pay it forward. I hope those who would benefit from avoidance find it sooner rather than later.

@Dufresne Agreed and well said!

 

[Dufresne]

Your personal experience is 100% irrelevant to the statistics. It's a matter of anecdote versus scientific research (or lack thereof).

And the statistics do not at all disprove your illness or the involvement of mold. The statistics are not attacking or questioning your individual experience.

But the statistics are disproving Shoemaker's claim. There is no reason at all to believe that having a specific HLA type is resulting in mold exposure symptoms in you or in anyone else. That does not mean that you are not reacting - it only means that as far science knows, your HLA types isn't involved in your reaction, and probably can't be. But others things can be involved - different genetic factors, the type of molds involved, other illnesses, etc.

I understand this thread was started with the intent of picking up scientific support for mold avoidance/treatment, and I totally agree with everything you write: it's lacking. I only post my anecdotes in hope those new to the subject and apparently interested in testing a theory don't throw the baby out with the bath water. I think the science not being there is a horrible reason not to try something that really doesn't cost much, carries no risk, and anecdotally has helped such a high percentage of those who've implemented it.

It's the same as when conservative scientific opinions are voiced on chronic Lyme threads. Both sides need to be stated, lest actual sufferers make a hasty decision and go years without treatment merely because the science can't justify it. This is especially tragic when, as in this case, the treatments in question carry absolutely no risk. Science-based medicine, although absolutely necessary, is a double-edged sword.

 

[Valentijn]

I think the science not being there is a horrible reason not to try something that really doesn't cost much, carries no risk, and anecdotally has helped such a high percentage of those who've implemented it.

Yeah, I'm not saying that anyone here doesn't have mold problems, or that whatever tactics won't help.
It's just that there's no relation shown between HLA types and susceptibility to mold.

Frankly I can't understand why some people are seeing that as somehow undermining the very existence of mold-related illnesses, or their specific situation. Though I suppose it's easy to get invested in the HLA theory if that's been the basis of someone explaining their illness to others. But sometimes we just have to accept that we don't know "why" yet, and just focus on fixing what's going wrong.

 

[Gingergrrl]

Though I suppose it's easy to get invested in the HLA theory if that's been the basis of someone explaining their illness to others.

I'm not sure if this is aimed at me but I am actually not invested in Shoemaker or the HLA theory and it is not the basis of how I explain my illness to others. If I was not currently in a legal case re: our situation with mold, I would say a lot more here. I lost my health, career and all my possessions down to my wedding album due to one of the highest mold exposures verified by three different companies in our city (including the one hired by our landlord.) The fact that of my family, I am the one who got sick and I am the only one with the bad mold gene was of interest to me and my doctors and attorney. If I can help anyone else, as Dufresne said, that is my motivation. My mold doc is phenomenal and she disagrees with Shoemaker on quite a bit including the value of many of his tests. I did the HLA test on my own before even seeing her.

 

[dysgha]

As is mentioned both in the other thread and the HLA-DRB wikipedia pages, DRB3/DRB4/DRB5 status is dependent upon DRB1 type. If you know your DRB1 types, you know what you have for those other DRBs as well.

Thanks - in that case, that calls into question a lot of aspects of this theory, which is entirely based around the idea that some people do not properly "detox" toxins due to their genetics. My lab markers were all in line with Shoemaker's diagnosis criteria, which would indicate that he is onto something (unless they are commonly out-of-range in non-sick people too, but I can't see that being the case), but if one claim is bogus, it makes you question what else he's off on.

I have to wonder why Shoemaker's research is never seemingly referenced, either positively or negatively. Its strange - usually bad research will be criticized and called out, whereas credible research provides the foundation for further advancement. It seems like Shoemaker is the only researcher exploring "mold illness," and the result is that his theories are the be-all-and-end-all of "mold illness". There's no scientific consensus, either positive or negative, to go off of.

 

[Thomas]

I dunno. I've done mold sabaticals without much gains. I would obviously need to go more extreme than what I have done but not sure I can manage it. People who can benefit from moderate avoidance are extremely lucky.

By moderate I mean moving from a crappy house in a city without any stuff into another house in the city that seems to be okay and then see improvements in their illness. Unfortunately it appears that not everyone can benefit from this. If it were as simple as moving we'd all be better. I've moved 4 times.

As for more extreme avoiders some have benefited substantially but I know a few who are stuck in no mans land. They've gone out to the boonies with no possessions. They cannot return to the city yet they are either too sick or too scared to go anymore extreme.

I believe mold avoidance is a big part of recovery however it is not nearly as simple as people say it is.

As for Shoemaker he's an awesome speaker and very smart. But he's not perfect and has some work to do. His inflammatory markers are a much more accurate definition that something is wrong and that you have issues to address. I think the HLA stats are flawed but for patients anecdotal info can be very valuable. If we wait for the science to catch up we may never see recovery.

 

[Gingergrrl]

I think it just depends on if you have a proven severe mold exposure and how badly you were affected. Some of my inflammation markers were off the charts and I had unbelievable shortness of breath and dysautonomia. My mold doc said the markers cannot prove the inflammation in my lungs is from "mold" (even though she believes it is) but when you look at the level (in my case) of exposure and that my symptoms started two months after moving into moldy unit, it all adds up. For me, the HLA gene is just another positive test of many others.

Mold is also a known trigger of histamine and I do not believe (in my case) that I would have developed severe MCAS without the severe mold exposure. I have tried anti-virals (for IgM activation to EBV and multiple viruses on blood tests) and every treatment under the sun for almost three years but the first thing to give me significant improvement is moving out of moldy unit, getting rid of our belongings, and finally beginning a mold protocol. I have had more improvement in two weeks than in almost three years. I am cautiously optimistic and so afraid to jinx it!

 

[Thomas]

I think it just depends on if you have a proven severe mold exposure and how badly you were affected. Some of my inflammation markers were off the charts and I had unbelievable shortness of breath and dysautonomia. My mold doc said the markers cannot prove the inflammation in my lungs is from "mold" (even though she believes it is) but when you look at the level (in my case) of exposure and that my symptoms started two months after moving into moldy unit, it all adds up. For me, the HLA gene is just another positive test of many others.

Mold is also a known trigger of histamine and I do not believe (in my case) that I would have developed severe MCAS without the severe mold exposure. I have tried anti-virals (for IgM activation to EBV and multiple viruses on blood tests) and every treatment under the sun for almost three years but the first thing to give me significant improvement is moving out of moldy unit, getting rid of our belongings, and finally beginning a mold protocol. I have had more improvement in two weeks than in almost three years. I am cautiously optimistic and so afraid to jinx it!

That's amazing! So you moved to a new building and left every possession behind including books, documents, clothes, etc...?

Is your mold Doctor a Shoemaker certified Doctor or does she do her own thing?

That type of situation is appealing as it is not so extreme. It does sound expensive -- the move and leaving all behind etc. I would do that. I also think for the same money I could do Ampligen. Both would be even better!

 

[Gingergrrl]

That's amazing! So you moved to a new building and left every possession behind including books, documents, clothes, etc...?

Is your mold Doctor a Shoemaker certified Doctor or does she do her own thing?

That type of situation is appealing as it is not so extreme. It does sound expensive -- the move and leaving all behind etc. I would do that. I also think for the same money I could do Ampligen. Both would be even better!

@Thomas

Yes, we moved to a new bldg and lost everything we owned (books, furniture, electronics, documents, clothing, sentimental items, literally everything.) The only thing we kept is our cars but we are considering even trading those in b/c they are cross contaminated. We had no choice and am happy to explain more via PM if it could be of help to you but am limiting what I say publicly for legal reasons. Can tell you about my mold doc via PM as well.

I do not think I would tolerate Ampligen (or anything via IV) and in my case, treating the mycotoxin exposure & MCAS turned out to be the most relevant which is not necessarily so for everyone.

 

[Thomas]

@Thomas

Yes, we moved to a new bldg and lost everything we owned (books, furniture, electronics, documents, clothing, sentimental items, literally everything.) The only thing we kept is our cars but we are considering even trading those in b/c they are cross contaminated. We had no choice and am happy to explain more via PM if it could be of help to you but am limiting what I say publicly for legal reasons. Can tell you about my mold doc via PM as well.

I do not think I would tolerate Ampligen (or anything via IV) and in my case, treating the mycotoxin exposure & MCAS turned out to be the most relevant which is not necessarily so for everyone.

Understood and thanks for the info. I may take you up on that

 

[Valentijn]

I have to wonder why Shoemaker's research is never seemingly referenced, either positively or negatively. Its strange - usually bad research will be criticized and called out, whereas credible research provides the foundation for further advancement.

His claims about HLA and mold haven't been published at all. One of the two HLA-mold documents he lists for a reference seems to be in the format of an email

 

[Hip]

@Gingergrrl
I take it you have seen Dr Joseph Brewer's work and hypothesis that chronic mold infections may be harbored in the sinuses in ME/CFS patients previously exposed to mold in their home/workplace. These sinus mold infections he believes continually pump out mycotoxins. Brewer uses anti-fungal nasal sprays as a treatment.

Some info here:
CFS Patient Advocate: Dr. Joseph Brewer and Mycotoxins, an update
CFS Patient Advocate: Dr. Joseph Brewer at ILADS, 2014

 

[Forebearance]

So Dr. Shoemaker has observed that his patients with chronic mold poisoning and chronic Lyme disease all have certain HLA-DR haplotypes. And, as I understand it, he thinks that being exposed to toxic mold or getting a Lyme-infested tick bite is the triggering event that causes the HLA-DR haplotype to express itself.

But what if another triggering event or triggering agent is necessary in order to become as sick as we all are?
Maybe the susceptible HLA-DR haplotypes are necessary but not sufficient to get seriously, chronically ill.

Look at Celiac Disease. I think it is established that having an HLA-DQ of 2 makes a person susceptible to getting Celiac Disease. But there are lots of people of European descent running around with an HLA-DQ of 2 who don't have Celiac Disease. And they have all probably been exposed to wheat.

I have two relatives with Celiac Disease. One developed it after having a bad viral illness as a young child. The other developed it after spending several months intensively caring for a person who was dying of inflammatory breast cancer. In both cases there was likely a triggering event or triggering agent that somehow "turned on" their susceptibility to Celiac Disease.

If you look at my case of ME/CFS, I was living in an apartment with a toxic mold issue and came down with mono when I got ill. The mono could have been a trigger that affected the expression of my genetic susceptibility.

It makes me wonder if researchers have studied what happens to a person's immune system when the person has a serious viral illness.

Or looking at Dr. Brewer's theory, maybe there is something about having a serious viral illness that leaves the door open for a fungus to move in to a biofilm in the sinuses. But maybe only in people with susceptible HLA-DR haplotypes.

 

[Gingergrrl]

So Dr. Shoemaker has observed that his patients with chronic mold poisoning and chronic Lyme disease all have certain HLA-DR haplotypes. And, as I understand it, he thinks that being exposed to toxic mold or getting a Lyme-infested tick bite is the triggering event that causes the HLA-DR haplotype to express itself.

But what if another triggering event or triggering agent is necessary in order to become as sick as we all are?
Maybe the susceptible HLA-DR haplotypes are necessary but not sufficient to get seriously, chronically ill.

Fore, I believe this to be true as well but you explained it much better than I could! I had a genetic susceptibility to mold that my family did not have and then was exposed to mold levels, literally off the charts, for 2-3 years. I believe the gene may have stayed dormant (or whatever is the correct term?) had I not had the mold exposure and level of illness that came with it. In my case, I do not have Lyme so cannot comment on that part. I had a series of triggers but the mold was the final death blow from which my body did not recover and led to severe MCAS at a level back in April & May that I thought I was going to die.

 

[Dufresne]

Frankly I can't understand why some people are seeing that as somehow undermining the very existence of mold-related illnesses, or their specific situation. Though I suppose it's easy to get invested in the HLA theory if that's been the basis of someone explaining their illness to others. But sometimes we just have to accept that we don't know "why" yet, and just focus on fixing what's going wrong.

I absolutely agree with your last sentence. As for the other part, I don't think it's the matter of shaking one's belief in a treatment that's working; anyone who's benefited from avoidance or mold treatment knows it's not just in their head. Nor do I believe it's the fear of losing a scientific explanation to convey to the outside world. Also I didn't notice anyone on this thread stubbornly insisting Shoemaker's work is solid. I think those of us sticking up for mold treatment do so in hopes others who might benefit won't be persuaded away from it.

It's kind of the same with CBT. Sure we can infer the intentions of the authors of the PACE study, but they're not explicitly saying the disease is psychosomatic. Yet we fear the tacit implications. And on the other hand when the science of the study is rightly called into question, do we throw out CBT as a viable treatment? Will our community be more likely to shun it because of the negativity it gets on this forum? That wouldn't be good.

Some of us believe published science is the only solid thing we can rely on to further our understanding, but when it comes to treating ME/CFS, it's unfortunately still, in my opinion, not all that helpful. Science-based medicine can be a real tyranny when it's used to malign bonafide treatments not firmly backed by its discipline. Many without the sophistication to understand the limitations of science may end up postponing helpful treatments, thereby suffering unnecessarily for years. Perceptions are really important in this disease and the stakes are high. Personally, I wouldn’t want any part in prejudicing a sufferer against a therapy that might spare them years of anguish.

Most on health forums do understand the value of cumulative anecdotes and can properly weigh that against hard science. But others, mostly overwhelmed newcomers, are less able to do so. And I'll confess I also worry about those veterans seduced by the dark art of science-based medicine, too. It pains me to see very intelligent people studying the minutiae of the hopefully relevant literature but never actually getting around to trying things that might help.

 

[jop]

@Gingergrrl, @Dufresne. Since you've posted that you hope people will read of your experience and explore mold as part of their CFS sooner, I just wanted to say I heard ya and thanks! I've been exposed to water damaged buildings in the past and we are currently in a very old timber house that doesn't get much sun. Needless to say, we're shifting as soon as we can and I will look into Brewers treatment approach. Gingergrrl, really hope those recent improvements are progressing without too much up and down!

I'm planning a fairly strict "mold sabbatical" for a couple of weeks in our new place but even that is quite daunting. Can't think how to decontaminate the cat, he won't be amused if I vacuum his fur or stuff him in the bath....

 

[Forebearance]

@jop : Shave him?

 

[IreneF]

@jop
Shellac!

 

[Gingergrrl]

@jop Lint or tape roller?

 

[Dufresne]

A good shampoo should do the trick. But it does look really funny when you shave them.