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

Hello,

My daughter has symptoms that could possibly be due to past mold/toxin exposure, so naturally I started reading about potential diagnostic tests in this area. However, I'd like to ask a scientifically critical question about some of these tests. Specifically, I'm referring to some of the basic blood tests that Dr. Ritchie Shoemaker talks about in his book, "Mold Warriors", and on his website www.survivingmold.com.

As one example, he mentions that if you don't have the particular, HLA DR genetic make-up for your body to recognize that you've been exposed to toxins, your body won't make antibodies to the toxins and the liver won't excrete them. Then, they can remain in your body. If that is the case, then a "backup" detoxifying pathway gets activated, as measured by a compound called C3a. Also, there can be a whole cascade of effects, which he explains in his book, that result in certain pro-inflammatory cytokines, such as TNF and IL-1B, among many others being made. It is my understanding that Dr. Shoemaker then concludes that if you have the altered HLA DR genetics, high C3a and other abnormal values (e.g. MMP-9, MSH, VEGF, VIP), then you must have been exposed to mold toxins and still have them in your body.

So, here is the critical question. Is it possible that you could test for C3a, TNF and IL-1B and these would be abnormal (high) due to some other toxic load on the body, such as toxins from a leaky gut or SIBO or even allergies? It is known that leaky gut can allow poorly undigested food particles into the body which the body may take for invaders and then mount an immune response. Also, allergens, whether environmental or those passing through the intestinal wall due to leaky gut, may also result in an inflammatory response. My point is that I wouldn't want to be pursuing a mold treatment for my daughter if in fact the same pro-inflammatory cytokines can be high due to leaky gut or SIBO, both of which my daughter has, or even allergens of some sort.

I suppose one could be more definitive in a diagnosis if one were to also test for HLA DR genes. However, this is a relatively expensive test and LabCorp is not included in our insurance coverage, whereas the other basic blood tests (e.g. C3a) would be in our plan and therefore covered. Of course, in the grand scheme of things, the extra short term cost would be worth it if the HLA DR test results confirmed whether mold/toxins "were the thing". In my mind, I would give more weight to testing for things like C3a if it specifically confirmed if a backup detoxifying pathways is still activated due to mold/toxins. But, if high C3a could also be due to SIBO, leaky gut, allergens or even a general inflammatory response, then it wouldn't be as diagnostic as he infers.

Does anyone with a background in immunology have a good answer to know if diagnostic tests such as C3a are being oversold as a marker for mold exposure?

Regards,
Scotty81

 

c3a is a nonspecific marker of immune system activation. It doesn't always mean mold. In fact, many times it is low or low normal in mold illness whereas it is usually high in Lyme or other bacterial infections.

It's really more looking at a typical pattern of test results rather than any one specifically unfortunately. If you take the whole battery of tests, plus the HLA markers (though there is some contention on how useful especially these are) together and a picture of mold exposure emerges as described by Shoemaker and others, that is a good sign that mold toxins are likely an issue.

 

@Scotty81 - Shoemaker's research regarding HLA types is fundamentally flawed. There are other threads about this here somewhere, but basically he reached his conclusions by comparing his European patients to worldwide HLA rates. But HLA types are tightly tied to ethnicity, so his conclusions are baseless.

This is further illustrated by looking at the prevalence of his supposed risky HLA types in North Americans. According to his claims, and prevalence data, nearly 90% of all Americans would be especially susceptible to various substances. This is obviously a ridiculous suggestion to make.

There is no published research (his HLA research is unpublished) showing that any HLA type contributes to susceptibility to mold.

 

@Valentijn Thanks for your reply. I had seen similar comments about Dr. Shoemaker comparing HLA types to worldwide types too, although I don't remember where I saw it either. Do you know of any postings that can really confirm this? Also, even if 90% of those in the States have the HLA type that contributes to mold susceptibility, that doesn't necessarily take away from his treatment results. In essence, I'm just trying to figure out if ANY of the tests that Dr. Shoemaker recommends are worth it, or if they would just be reflective of general inflammation. I have also seen info on Gordon Medical Associates' website that talks about them successfully using Shoemaker protocols in treatment. There is also controversy about the usefulness of RealTime Laboratories tests for mold toxicity, but that is another story. So, any elaboration on the general topic would be appreciated.

Thanks,
Scotty81

 

http://forums.phoenixrising.me/index.php?threads/interpreting-hla-dr-test-results.37877/#post-604197 and other posts in the thread. I've also looked for HLA research into mold, and there is none which has been published.

His other theories might be correct, but based on the serious methodological flaws in his HLA theory, I wouldn't consider him to be a trustworthy source. A better source is needed, preferably in the form of published research.

 

Valentin, do you have a source I could look at for HLA-DR genetics in Americans? I often see it reported as fact in many sources that the HLA genes are present in only 24% of people.

 

Everyone has HLA genes. But they are often reported as specific types, which some people will have and some will not.

Wikipedia is a great place to start. And each HLA article links to a lot more articles, so you can find pretty much everything about HLA in there: https://en.wikipedia.org/wiki/Human_leukocyte_antigen

 

I wouldn't bother with the HLA DR for the reasons already stated. It's also my understanding that C3a and C4a are not specific, as Shoemaker implies. However, I know a number of people who tested greater than 20,000 for C4a, started practicing serious avoidance, and saw those numbers drop fairly quickly. This was almost always accompanied by an improvement in health, and often a decrease in PEM symptoms. Though anecdotal, this is one of those interventions that seems to produce consistently positive results; probably more so than anything else I've come across on PR.

Had I not addressed mold and moved from a toxic house I'd still be in the dark ages of my illness. Since implementing avoidance I've virtually eliminated a nasty case of electrical hypersensitivity, halted the progression of my food sensitivities, and regained my tolerance of medicines. All of which has enabled me to make further health gains. I also have reason to believe it factors into my PEM. I shudder to think where I'd be without it, which is why I try to drop an endorsement for mold avoidance whenever it comes up on the forums.

 

Thanks - I meant if you had any sources as to the frequency of the HLA-DR genes among Americans (or Europeans, I guess). I wanted to see how common those "mold genes" are in people of European descent. I checked through the Wikipedia entry for HLA-DR but I could only find one chart which only had the frequency for some.

 

I definitely do think there is something there (especially because my sickness immediately followed moving into a very moldy residence). I guess what I wonder is just how clear is the science, considering that the treatment entails a lot of money, prescribed drugs for off-label uses, drastic measures (getting rid of belongings, etc.), avoiding entering any moldy buildings for even 5-10 minutes, etc. The HLA-DR idea is the foundation for the entire treatment protocol and a lot of the steps are based on the idea that individuals with the specific genes cannot properly remove these toxins from their body.

 

The North American frequency for all of the HLA types relevant to Shoemaker's claims are in the Wikipedia pages.

It pretty well proves that Shoemaker's claims are bogus. If he was correct, entirely by coincidence, it would literally be half of everyone in a mold-tainted office building getting very sick, not one or two people.

 

Unless I'm missing it, I don't see DRB3 or DRB4 frequencies referenced in the charts, which are part of his HLA-DR theory.

 

In response to the original question, I cannot see how C3a, TNF or IL-1b can be markers of mold related disease since they are quite non-specific. It does not look as if the DR genes would tell you much either, as Valentijn points out.

 

I've never seen those listed as markers of mold illness in Dr. Shoemaker's literature, despite what the original question stated. What is typically listed is C4a, TGF Beta-1, MSH, VIP, and the other markers listed on his website (http://www.survivingmold.com/diagnosis/lab-tests), whether or not these are any more credible.

 

There are so many kinds of mold, and so many microscopic spores floating around, that talking about them in generalities doesn't make a lot of sense. We breathe them, we eat them. Only a few have an effect on our health.

https://en.m.wikipedia.org/wiki/Mold_health_issues
https://en.m.wikipedia.org/wiki/Mycotoxin#Major_groups

 

@Dufresne Agree 100% and I think until someone has experienced something directly it is very hard to imagine and easy to quote statistics. I am seeing one of the top mold docs in the country (and was very lucky to get an appt with her) and following her current treatment protocol is the first thing that has truly helped me gain improvements in my health in almost three years.

 

That's great to hear! I know you've had a tough time with the sensitivities, but it sounds like you're on the right track now. And thanks for posting. I'm forever grateful to Lisa and all the others who posted about their success. These people, and my own desperation, is what got me to try avoidance. 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.

 

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.

 

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 am speaking as someone with severe mold exposure who *afterward learned I have the worst haplotype that cannot detox mold (not the other way around) vs. others in my family who could take mold binders from the start and detox mold and did not have that genetic haplotype.

It is only after moving to a mold free environment and giving up all our belongings that I am finally able to start on a protocol and it is helping me. It is not an easy path nor a quick one but if anything I share can help someone down the line than I will continue to do so.