The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Interpreting HLA-DR test results

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Forebearance, Jun 3, 2015.

  1. Forebearance

    Forebearance Senior Member

    Messages:
    561
    Likes:
    350
    Great Plains, US
    Helen likes this.
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    @Forebearance thank you so much for posting all of this info for me and I really appreciate it! My very kind friend @Ema actually decoded the results for me and I have the very most dreaded evil mold haplotype as I fully suspected.
     
    Forebearance likes this.
  3. Forebearance

    Forebearance Senior Member

    Messages:
    561
    Likes:
    350
    Great Plains, US
    Ack! Isn't that just the way it goes, @Gingergrrl ? I am so sorry to hear that!
    But I guess we shouldn't be surprised any more when someone with ME/CFS has one of these haplotypes.
    You are definitely not alone on this forum.
     
    Dufresne and Gingergrrl like this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    @Forebearance thank you and not surprised I have the bad mold gene.

    Do you recommend a mold doctor in Los Angeles or So. CA? I have gotten numerous lists and some lists are so old that the doctors are no longer alive!

    The closest doctor seems to be Janette Hope who is two hours north of me in Santa Barbara. I will be seeing an MCAS specialist in two weeks which is my first priority and then mold doctor is #2.

    Lots of people in LA claim to treat mold but their websites are dubious to me. I am prepared to pay for treatment but want someone solid and legit.
     
  5. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    Sorry to hear about the haplotype, Gingergrrl. At least you know what you're dealing with now. It's too bad the HLA DR costs $600; I think this whole forum would look different if it were covered by 23andMe.
     
    Gingergrrl likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    @Dufresne thank you and was curious if you guys could explain more b/c everyone keeps telling me that it is good that now I know what I am dealing with but how does that translate into practical terms? I was wondering what feedback you guys have for me?

    Am hoping insurance pays for some of these mold tests (since all ordered by a doctor) but I doubt it. All will be part of our future lawsuit.
     
  7. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    The good news is that people recover from biotoxin illness; the bad news is they often have to take extreme measures to get there, especially if they've one of the dreaded haplotypes. Which one do you have, specifically?
     
    Gingergrrl likes this.
  8. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    @Dufresne I have 11-3-52B which I believe is the very most dreaded?
     
  9. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    It's a bad one but it's better than waiting around for an indeterminate period of time with an idiopathic condition. You now have direction. That's how I've seen it since learning I have the 17-2-52a and the 1-5, and I'm much better for it.

    Make it happen and stop at nothing.;)
     
    Valentijn and Gingergrrl like this.
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    @Dufresne My report from Lab Corp only had "test one" and not "test two" so am I supposed to have a second number like you do? I am not sure what you mean re: the 1-5 in addition to the haplotype?

    I am not sure of your mold story or other conditions but I love your last quote "Make it happen and stop at nothing" and I continue to feel very discouraged by severe MCAS reactions that I know were brought about by mold. The road ahead is so daunting being this ill.
     
    justy and Valentijn like this.
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    At that cost, you'd might as well go for whole exome sequencing while you're at it :p I think the current cost is about $1,300 for the coding sections of every known gene. And all HLA types should be decipherable with that data.
     
  12. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    The first set of numbers is what I got from one parent and the next is what I received from the other. That's how it works for everyone. Does the fact you only have one suggest you're homozygous? I believe it does. In which case it's a double whammy. I'm sorry. All I can suggest is you take it very seriously. I think Erik, pioneer extraordinaire, is homozygous for a dreaded type too. So just know that it can be done.

    I hear your discouragement but the depths that you feel right now will only lead to a greater triumph in the end. Watch Dave Asprey's documentary "Moldy." You won't learn all you need to know but it is somewhat inspiring and hopefully gives you an idea of what getting on top of this thing can be. I especially enjoyed what Dr Pedram Shojai had to say starting at 53:50. It was so bang on that every hair on my sympathetically dominant body stood up to salute it.

    I've lived my whole life under this veil, in a fog, filled with anxiety, doubt, shame, etc. I suffered from the earliest age with no idea of what was wrong or what was possible, just trying to hang on, and it only got worse. I had my negative self-appraisal reflected back at me from the faces of the people I care about most. But the feeling of starting to emerge from this, and knowing I'm on the right track has empowered me in a way I can't put into words. I admit it has a sort of delusional quality when I try to look at it objectively but on the inside it's a certainty. I wish we could all experience this. It may not be the best example, but as a person of Scottish descent and a film nut, I liken these feelings of power and passion to something out of the movie "Braveheart." And it's not that I'm a brutal person but to put it into warrior-speak, I can now go into battle against my oppressor and bite his f*#king head off. Perhaps I should have left it at "stop at nothing," but you get the idea. You'll find that inner strength.

    https://moldymovie.com/freescreening?affiliate=0
     
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    @Dufresne According to my friend who decoded it for me I do have a different second set of numbers but need to check her email again to see what it is. So I think I am not homozygous but need to confirm with her. But in either case I have the dreaded haplotype and we learned today that our mold and mycotoxin levels are so severe that none of our belongings can be salvaged and we lose everything we own- aside from the fact that this illness has robbed me of my life. Would love to say more publicly but can't pending lawsuit.

    Thank you and you have been very inspiring to me the last few days.
     
  14. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    Well, look on the bright side ... 28.6% of Caucasians have a "most-dreaded" (Lyme + Mold susceptible) HLA type, 47.5% of Caucasians have a "mold susceptible" type, and 44.5% of Caucasians have a "Lyme susceptible" type". And if you add together the prevalence rates of all of the unique "susceptibilities" listed on Shoemaker's site, it comes out to 86.8% of Europeans being afflicted.

    I'm getting a distinct whiff of BS coming from the site. The problem is that his "afflicted patients" are being compared to "international HLA rates" and lo-and-behold, his patients have way more of these HLA types. Which means those HLA types must be relevant, right? No - it just means his patients are nearly all of European ancestory, which isn't exactly shocking in the USA. HLA types are highly linked to ethnicity, so conclusions cannot be drawn by comparing European patients to worldwide controls.

    Yet that seems to be what is happening. I'm looking for research backing his claims of HLA associations with susceptibilities, but haven't found any so far. There are two links to his own HLA papers on his site, but neither is published and one is simply an email. The non-email supports some of his claims, but lacks the details necessary to confirm his claims regarding grossly increased prevalence rates, and lacks p-values for the HLA data.

    Anyone know where there's some published research regarding a connection between mold and/or Lyme, and the HLA types implicated by Shoemaker? His listed papers are at http://www.survivingmold.com/legal-resources/papers-by-dr-ritchie-shoemaker and his list of naughty HLA types is at http://www.survivingmold.com/diagnosis/lab-tests
     
    Eeyore likes this.
  15. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    I've appreciated your scientific analysis for some time, but are you sure about these numbers? It was my impression the prevalence of biotoxin susceptible genes (all of them combined) was only about 25% of the American population, and that the dreaded haplotypes were quite rare at 1-2%. But I'm just going from memory, and I've never come across an analysis of the HLA DR breakdown of the general population. I've tried looking up prevalence and comparisons to get an idea of the significance of Shoemaker's work but not had much luck. Moreover this is the first time I've heard this argument. Where did you get these numbers from?
     
    Gingergrrl likes this.
  16. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    I think the most dreaded haplo type is 24% from what I read and I think it pertains to people of any ethnicity can take this test. Regardless I was exposed to toxic black mold for two yrs and now sickest of my life and we lose all our belongings b/c mycotoxin levels so high on all our household goods. But knowing I have the gene helps put it in perspective for future treatment and legal action.
     
  17. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    From his site:
    "Dreaded" haplotypes:
    4-3-(53) - 16.9%+ of European Americans
    11-3-(52B) - 8.6%+ of European Americans
    12-3-(52B) - 1.1%+ of European Americans
    14-5-(52B) - 2.0%+ of European Americans
    = 28.6%+ of European Americans who have the "dreaded" haplotype. Then the the "mold" haplotypes add up to an additional 18.9%, and Lyme to another 15.9%, and some more for Low MSH (11%) and Chronic Fatigue (12.4%).

    The 3rd part of each haplotype is in parentheses because that type is always associated with the first type, so tends to not be mentioned. And percentages may be higher than listed, as they're based on a listing of only the most common ones ( table at http://en.wikipedia.org/wiki/HLA-DR#Genetics ).

    This is looking like a test which nearly everyone should fail. In fact, his list of implicated HLA haplotypes only really excludes DR1, DR8, and DR9, which add up to 14.1% of the European American population being safe.

    I'm also not sure that "dreaded" is a rational word to use when the association with a disease supposedly causes the risk to double. Since mold-related disease is very rare, doubling the occurrence as indicated in his unpublished paper still makes it very unlikely that HLA type is going to result in disease - and it most certainly is not diagnostic of anything.
     
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,909
    Dear Gingergrrl,
    I think valentijn has made some sensible comments. I think I would go as far as to say that the stuff on this site is complete nonsense. I don't think having this haplotype means anything at all to be honest. We discuss stuff of a wide variation of quality on PR but this looks like complete junk to me.
     
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    I think we will have to disagree that mold related disease is very rare and I now know it is a huge piece of what led to my current level of illness. I think that gene shows that a person lacks the ability to detox mold compared to one without that gene (whether he uses a silly word like dreaded or a more scientific word.)
     
  20. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    That is your opinion, I am not up for debating it right now. Will stick with private conversations and clearly everything is "junk" to you but I am fighting for my life right now.
     

See more popular forum discussions.

Share This Page