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Do you know your HLA types?

Discussion in 'General ME/CFS Discussion' started by Eeyore, Jun 14, 2015.

  1. Eeyore

    Eeyore Senior Member

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    I'm curious if there is an HLA association with ME...

    I figure most people won't be able to answer this, but does anyone out there know any or all of their hla's?

    These would be things like HLA-A, HLA-B, HLA-C, HLA-DR, and HLA-DQ.

    You can get a few clues from 23andme, but it won't give you a full typing.

    These molecules are important in many aspects of disease.
     
  2. Valentijn

    Valentijn Senior Member

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    23andMe gives almost no useful data at all. Most of the relevant SNPs in determining HLA genotypes have 3 or 4 possible alleles, and 23andMe doesn't seem able to handle more than 2.
     
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  3. Eeyore

    Eeyore Senior Member

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    Agreed - it's of limited utility. It can flag a few with some accuracy, but I doubt anyone can get an accurate typing of all their HLA's with SNPs. I know mine because my doctor ordered it.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Is this related to mold testing or something different? I think it is called HLA DR or something similar?
     
  5. Eeyore

    Eeyore Senior Member

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    I don't know a lot about mold testing, and that's not one of the main purposes of HLA's. HLA's determine susceptibility to many diseases, both infectious and autoimmune, because they determine what your immune system reacts to. So, presumably, some alleles might affect mold sensitivity and allergies in general.

    HLA-DR is one of the HLA's that is highly variable and important in histocompatibility testing (i.e. transplantation).

    All of these genes are clustered together in the same small region of chromosome 6.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Sorry I thought HLA DR was the mold test so I think we are talking about two different things! I apologize!
     
  7. out2lunch

    out2lunch Senior Member

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    Actually, HLA-DRB and DQ testing is what Ritchie uses for the "Rosetta Stone" in determining the haplotypes that makes one susceptible to CIRS. It's the same testing (done through LabCorp) for transplantation purposes.

    If I'm not mistaken, aren't the multi-susceptible haplotypes which Ritchie has infamously labeled as "dreaded" the same ones which transplantation doctors see in their patients whose transplants fail? Anyone know if that's the case?
     
  8. out2lunch

    out2lunch Senior Member

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    As for the celiac HLA genes… I wouldn't be surprised if the majority of ME patients had risk alleles for at least one of them. Most of us to live on the street of messed up guts where gluten removal seems to help.
     
  9. Eeyore

    Eeyore Senior Member

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    Transplant rejection is not so much related to the particular haplotype as much as it is related to the degree of match/mismatch.

    I suppose there could be some kind of linkage reason why some haplotypes might be more of an issue for transplantation. Some are certainly more rare and harder to match.
     
  10. Valentijn

    Valentijn Senior Member

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    The "dreaded" types are common as hell in European patients. I did the math recently and something like 85% of Europeans would be especially susceptible to Lyme, mold, or the "dreaded" both, according to his statements.

    He managed this astounding feat by comparing his (North American) mold patients with world-wide prevalence rates of the various HLA types. This doesn't work because HLA types are closely tied to ethnic origins. Hence his North American mold patients will have a certain subset of HLA types due to being of Caucasian ethnicity, yet he is taking it as evidence that those HLA types are associated with their status as mold patients.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Why do you assume that all North Americans are Caucasian vs. other ethnicities or bi-racial or multi-racial? Just curious.
     
  12. Valentijn

    Valentijn Senior Member

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    Statistics. And even black people and bi- or multi-racial people living here for some generations will usually have a fair bit white ancestry.
     
  13. out2lunch

    out2lunch Senior Member

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    I had no idea that the dreaded types are so prevalent in European patients. And I guess that would carry over to those of European descent?

    So what exactly is the connection between the dreaded types and functional medicine doctors' claims that their sickest patients almost always have the dreaded types? Is this simply statistical coincidence, given the prevalence of these types in European ancestry, and the prevalence of those patients to be of European ancestry?

    I've always considered this disease to be mostly a problem for Caucasian patients. But given the socio-economic disparities of adequate health care in this country, especially in functional medicine which rarely accepts Medicare and Medicaid, it would be almost impossible to prove. Poor minority patients simply don't have the same functional medicine access that middle class patients have, who are disproportionately Caucasian. Who really knows what the actual percentage of minority patients is who suffer from mold toxicity. Traditional western medicine still has its collective head up its arse for the most part, regarding the detrimental effects of mycotoxin exposure.
     
  14. Valentijn

    Valentijn Senior Member

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    Since the "dreaded" types were labeled that way due to comparing American mold patients with world-wide HLA types, the methodology was completely flawed and the outcome was useless. So there's basically no known relationship between those HLA types and susceptibility to mold.

    It's possible that some HLA types are susceptible, but that can only be determined with proper research. If a doctor is going to use his local mold patients for that research, he needs to use local controls. And due to the high linkage of HLA type to ethnicity, ethnic matching of those controls is especially crucial.

    But Dr Ritchie Shoemaker doesn't practice currently, and can't resume practicing unless he's closely supervised for the first two years when he starts up again. He ran into some problems with Maryland's medical board for numerous infractions over the years. Hence it seems pretty unlikely that he still has patients or will be involved in medical research.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    I know this is not the topic of this thread and I thought HLA types strictly referred to mold when I asked the question and am still not sure what they are. But many people have successfully followed protocols by Shoemaker as part of their treatment and many doctors who have tried to help us like Sarah Myhill or Jay Goldstein have been sanctioned or punished for thinking outside the box. We can't always have perfect double blind placebo controlled studies and the movie "Moldy" explains this better than I could. If Shoemaker or Brewer or any mold doctor has a treatment that can help me to breathe or walk again, I will take it and I will thank God for it. Maybe different areas are different but the state that I live in does not have a Caucasian majority and I know many people who have taken the HLA test who are not Caucasian. I really do not see how that factor is relevant in any way.
     
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  16. Valentijn

    Valentijn Senior Member

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    Basically they play a big part in how our immune system is regulated. Some research has found correlations between HLA types and autoimmunity and susceptibility to other problems.
    It's not just a matter of it not being a perfect study. It is a deeply and fundamentally flawed study which cannot produce useful results.
    As a comparison, the doctor could reach a similar erroneous conclusion by comparing the prevalence of blue eyes in his patients to the general prevalence of blue eyes around the world. Many of his patients will have brown eyes instead, but due to the even lower rates of blue eyes elsewhere, blue eyes will be about 10x more common in his mold patients than in the world population. But this does not mean that blue eyes make someone more susceptible to mold problems.

    It's the same with HLA - it's a group of genetic variants closely tied to ethnicities. You can't reach any sensible conclusion by comparing the rates of ethnic features of a local sick population with the rates of ethnic features in an international healthy population. The results are completely meaningless.
     
    Last edited: Jun 15, 2015
  17. Gingergrrl

    Gingergrrl Senior Member

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    I am going by how sick I am after breathing in black mold for 2.5 yrs through our A/C system. The HLA test only confirmed what I already knew. No one in my family or husbands family has blue eyes. I think we just agree to disagree and this is just one test of many that I hope to have and I believe my results are accurate and if you want to refer to them as meaningless that is your prerogative.
     
  18. Eeyore

    Eeyore Senior Member

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    HLA's are not specifically related to mold in general. Their primary use in medicine is in histocompatibility - that is, in transplantation from one person to another. They determine whether 2 people are compatible enough to swap organs. No 2 people are perfectly histocompatible except for identical twins, although 1 in 4 siblings will be very close. My sister and I are not identical - we match on one chromosome, but not the other. So for kidney or liver transplantation, that would mean we are a 3/6 match, which is usable but requires more immunosuppression than a 6/6 match. (Generally, you'll be 0/6, 3/6, or 6/6 with a sibling since they are closely linked and transmitted together). For bone marrow transplantation, we would be 5/10 - which isn't really very good. A good match is far more important for bone marrow, and HLA-DR/DQ and to a lesser extent DP can matter.

    The other very interesting aspect of HLA's, and closer to why I ask here, is that they are major determinants of immune function, and hence, susceptibility or resistance to autoimmune/autoinflammatory disease and infectious disease. The strongest association is probably HLA-B27, which is very strongly associated with ankylosing spondylitis, psoriatic arthritis, inflammatory bowel disease, reactive arthritis, and similar diseases. HLA-DR4 predisposes to rheumatoid arthritis, as do some subtypes of HLA-DR1 (not DRB1*01:03, but the more common DRB1*01:01). HLA-DR11 predisposes to systemic sclerosis. HLA-A1 is protective against type 1 diabetes. HLA-DR3 predisposes to multiple sclerosis. There are many other examples, and they affect autoimmune diseases as well (e.g. B27 carriers are relatively resistant to HIV, but B35 are susceptible - with Lyme, DR3 carriers are susceptible to chronic lyme whereas DR11 are resistant - that's probably more autoimmune than infectious, although it may relate to how rapidly and effectively the bacterium is cleared).

    HLA's may also affect allergies, since the antigen fragments that are presented (and hence, against which the body forms antibodies - including IgE, which is involved in allergies) are determined by the HLA's. It's possible there is a connection to mold allergy.

    Personally I think Shoemaker has some interesting observations, but I think his interpretation is completely wrong. I don't think all these patients are exposed to mold or other biotoxins. Maybe a few are - if any... From what I hear though he was really obnoxious to his patients and is one of those docs who really wants to make a lot of money. I have no idea if the cholestyramine works at all - I have not tried it and have no plans to. My illness has not been better or worse living in multiple states and multiple places in each state - so I really don't buy the mold idea. He's not really able to prove the mold connection, although he has shown some abnormalities in patients, mostly autoimmune/endocrine/neuro.

    I wouldn't put him with Dr. Goldstein or Dr. Myhill. I know Dr. Goldstein was incredibly dedicated to his patients, and never made any money doing what he did. He ended up in trouble with the California medical board only because they couldn't understand his work. Also, a lot of his work was trial and error. I think many of us would appreciate that though - a doc who will go through 500 meds until we feel better. Most of us are lucky to try a new drug a few times a year, and most of the time they do not work, and many of the drugs that Goldstein found most effective are not drugs the average doc would use. Goldstein stepped up and helped his patients because no one else would/could. I don't know Myhill as well but I think her case is similar. For example her website is free and contains pretty much all of her thinking on the subject. Not true of all docs. That doesn't mean she's right - I don't know - but I think she is trying and thinking about it, and she's doing it to help her patients. She's also unfortunately in the UK (unfortunate for her) - the UK has one of the most backwards medical systems right now in treating patients with ME thanks to Wesseley and the psychobabble crowd having gained so much power because their treatment approach is cheapest...

    Norway seems to be one of the most progressive. Not sure about how Belgium is, but I know DeMeirleir is there - but he may be a speciality physician. @Valentijn has said generally the Dutch system isn't very good for ME patients at all. Canada isn't so great either based on Dr. Hyde's descriptions. The UK is probably the worst though because of Wesseley's influence and huge budget cuts since the time of Thatcher that have adversely affected the quality of care for patients, especially those with strange illnesses like ME.
     
    Last edited: Jun 15, 2015
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @Eeyore sorry am not following all that but appreciate you typing it. Am not sure what else to say on this topic and much over my head.
     
  20. Eeyore

    Eeyore Senior Member

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    @Gingergrrl - @Valentijn makes good points that Shoemaker hasn't really proven he's right. That said, it's possible he is. It's also possible he's half right - which actually I think is more likely. There may be HLA linkages, but I don't think it's generally a mold issue. I think it's broader than that. The MHC region of chr 6 is a very interesting region - lots of really important and variable genes in that area - and a lot are in tight linkage disequilibrium (they pass together) with the numbered HLA's we often sequence. There are several disorders with known genetic anomalies that we test HLA's for - because the HLA's are so connected, so if the parent passed that set of HLA's, they passed the bad allele or good allele of some other unrelated gene that is nearby. Hemochromatosis is one example - the HFE gene is right in that area.
     
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