Greg at BiotoxinJourney.com is posting again, having posted three times so far this year. I thought I'd post what he wrote regarding HLD-DR testing in the context of Chronic Inflammatory Response Syndrome (CIRS). I was afraid this potentially useful information might get lost in our massive thread Chronic Inflammation as a contributor to Alzheimer’s.
Apparently, HLA-DR testing has fallen out of favor. In 2017, Dr. Sonia Rapaport presented at the International Conference on Chronic Pathologies. At 10:30 in that presentation, she discusses the fact that the number of people that have a susceptible haplotype is much higher than the 24% reported by Dr. Shoemaker. Race, country, and ethnicity all play a role. For example, 90% of folks in Belgium have at least one “bad” halplotype. Given this, she seriously questioned the usefulness of HLA-DR testing.
Below [referring to a comment to Greg's post] Sean also points out that in the 2016 Irvine Mold Conference that Dr. Shoemaker himself commented that HLA-DR testing is questionable. I don’t have those videos, but I do have notes that others took of the conference. At that time, Dr. Rapaport was already looking into HLA-DR.
Personally, learning that I have two mold-susceptible haplotypes has been instrumental in my pursuit of the possibility that I have mold illness. The typical CIRS testing I had was mostly normal (the exceptions: slightly elevated TGF-Beta-1, low MSH, and low ADH, but other things can cause these results). Nonetheless, to further investigate the possibility, Dr. Bredesen recommended I do a urine mycotoxins test and later so did my local FM practitioner. In November 2017, I finally did that test and was found to have extraordinarily high levels of two mycotoxins.
So yes, I do have mold illness, which was also confirmed through a recent consultation with Dr. Mary Ackerley.
I feel conflicted about HLA-DR testing falling out of favor. If it weren't for my two mold-susceptible haplotypes, I likely would have dropped pursuing the possibility that I have mold illness.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
Thanks for posting that Brain. It helps me understand why Dr. Ackerley didn't feel testing HLA was that important. I don't know if that would have been her feedback if I hadn't expressed concerned about the cost of everything, but I recall her just saying that it's 'complicated'.
I know JulieG has posted here that the HLA testing was instrumental in her exploring Lyme and finding a co-infection. There must be many who share your experience.
I don't have an opportunity to listen to Dr. Rappaport's statements right now, but I wonder what the prevalences of the illness haplotypes are in your population? The HLA test may be more useful to those from a population in which the illness haplotypes are less common?
Probably more importantly, I guess the population overview suggests, pending clinical correlations, that even where the illness haplotypes are highly prevalent actual incidence of illness can be low, while where they're not as prevalent illness can still be high. IE, the whole association of HLA haplotypes with specific toxin overloads falls apart, and it was a coincidence that your mycotoxin test was positive alongside your mold haplotype.
Just thinking out loud here. This is a great example of why I have such mixed feelings about much of functional medicine.
Given how common CIRS and mold illness are, maybe anyone presenting to their doctor with associated symptoms should just be screened for these mycotoxins without needing the HLA typing as a tipoff. But that's a pipedream in our healthcare system.
Maybe it would be a fair suggestion to other forum members suffering suspicious symptoms to spend their money testing for actual mycotoxins, lyme, epstein barr and the like rather than the genetics.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
circular wrote:Maybe it would be a fair suggestion to other forum members suffering suspicious symptoms to spend their money testing for actual mycotoxins, lyme, epstein barr and the like rather than the genetics.
I think all your points and questions are good ones. The one I quote here sounds like a reasonable approach to me. I would have saved a lot of time, worry, and wondering if I had begun my mold illness journey with a urine mycotoxins test. One thing, though, is that the test I had done through Great Plains Labs is out of pocket. I paid $299 for it, with my provider’s discount. But it was worth every penny.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
