Does anybody know how to read HLA DRB, DQB test?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by redhummingbird, Jul 25, 2008.

  1. redhummingbird

    redhummingbird New Member

    I got my results today. I mistakenly thought the test results would be easy to read.

    Does anybody have any suggestions on how to read it or point me in the right direction?

    Also got results back from MMP-9, MSH, CD57 panel, C4a level.

    I've never used LabCorp before but geez-the results are confusing to sort through.

    Thanks for any help. I don't talk to my doctor until the 6th. I always like to be a step ahead and have questions ready and waiting.
  2. Slayadragon

    Slayadragon New Member

    I'd love you see your results!

    If you want, please post them on the board.

    I am really eager to try to make some sense out of them, and I know that Forebearance will be too.

  3. redhummingbird

    redhummingbird New Member

    slayadragon-here are my results. I'm not even sure how to post them but maybe someone who knows more can help out:

    HLA DRB, DQB Typing

    DRB1 0301
    DRB1 0401

    HLA DQ 02MS
    HLA DQ 03CFTD

    DRB3 01USC
    DRB4 01ZDV

    _________

    MMP-9 739 (Reference Range= 0-983)

    C4a Level 2158 (performed at National Jewish Hospital) (Reference Range 0-2830)

    MSH 12
    (Note: I found a site where Dr. Shoemaker states that any MSH level less than 35 is considered low). I don't know what a low MSH level means yet. Any guesses?

    Let me know if you need more information. I'm trying to google information but can't find anything noteworthy.

    I'm very interested to see what you think! Did you get your blood drawn yet?

  4. Forebearance

    Forebearance Member

    Hi, redhummingbird!

    That is exciting that you got your test results back!

    In order to read the HLA-DR test, you have to use the appendices in the back of "Mold Warriors" to translate it.

    You can either do it yourself or wait and let your doctor follow the instructions and do it for you. Or do it together!

    When I got my test results, I dashed for my copy of "Mold Warriors" and immediately translated them. I couldn't wait to find out what my genotypes were.

    It turned out to be a good thing, because my doctor had little time to read and follow those instructions. Most doctors have probably never translated one of these tests before, I would bet.

    Once you have your results translated, you use the chart to figure out what they mean, for our purposes.

    I can't wait to find out what you have!

    Yes, Dr. Shoemaker has said that an MSH level of less than 35 is too low for neurotoxin poisoned patients.

    One mother on his board reported her son had an MSH of 8. That's really low! Suposedly, having low MSH means that a person's endocrine system can be easily knocked out of balance, which can lead to all kinds of unpleasant symptoms, as we all know. You can read all about it in the MW book. Or on chronicneurotoxins.com, I believe there is an article about MSH.

    Well, at least your MMP9 and C4a are within the range of normal! Maybe that suggests that you don't have a whole lot of inflammation from cytokines happening yet. It will be interesting to hear what your doctor says about it.

    Love,
    Forebearance

    [This Message was Edited on 07/25/2008]
  5. redhummingbird

    redhummingbird New Member

    Thanks for your reply! I can't wait either!

    Now I'm going to search the web to see if I can find a copy of Mold Warriors to download.

    I have all these lab tests results in front of me and I want to know what they mean. It's like a big puzzle. I love puzzles so this is kind of fun.

    Do you know what a low MSH means? It looks to me that it means my body has an inflammatory response which is creating an MSH deficiency.

    I'm not even going to try to figure out the CD57 panel at this point.

    I'm also going to research your posts...
  6. Forebearance

    Forebearance Member

    Okay, good luck!

    Yeah, I think what you said about MSH is what I've read about it.

    I don't know what the CD57 test means. I didn't have that one done. Hopefully it will tell you something useful.

    F
  7. Slayadragon

    Slayadragon New Member


    Well, I gave it a try. This is my first one ever, and so I might well be wrong.


    Use just the first two digits for each score.

    DRB1 03
    DRB1 04

    HLA DQ 02
    HLA DQ 03

    DRB3 01
    DRB4 01

    For DRB1, substitute “17” for “03”.

    For DRB3, 01 = 52A.

    Since DRB4 is present, this is 53. Since DRB5 is not present, omit 51.

    DRB1 17
    DRB1 04

    HLA DQ 02
    HLA DQ 03

    52A
    53

    Re-group so you can see one gene from each parent.

    DRB1 17
    HLA DQ 02
    52A

    DRB1 04
    HLA DQ 03
    53

    The first gene is Mold Susceptible, since that’s the one that matches those three genes (DRB1=17, HLA DQ=02, DRB1=17)

    The second one is Multi-Susceptible (DRB1=4, HLA DQ=03, 53).


    The Mold Susceptible one would mean that if you had been exposed to toxic mold at any point in the past, your body wouldn’t have done a good job of eliminating the toxin. Dr. Shoemaker seems to think that you would need cholestyramine or some other detoxifier in order to get that toxin out.

    The Multi-Susceptible one is what Shoemaker calls the “dreaded genotype.” Apparently people with this genotype have a harder time getting well.

    (For what it’s worth, Erik apparently has two of these “multi-susceptible” genes. To me this is good news---he’s managed to find a way to live a reasonably healthy life regardless. It also says something about how challenging these genes are---he’s got to work very hard at it, all the time!)

    I wish I knew more about the multi-suceptible genotype. Does that mean that people are unable to detoxify _anything_? (Forbearance? Others?)


    I have to go now, but will come back to the rest of the results again.
  8. redhummingbird

    redhummingbird New Member

    Thanks so much for doing this!

    It makes sense to me. I had a feeling I had the dreaded genotype. It's helpful to hear about Erik. I wonder where he is these days?

    I need to follow up with mold testing here where I live. I know I've been exposed to lyme toxins.

    My doctor had ruled out mold toxins but he didn't do any sort of tests for it.

    I've been on the phone calling bookstores all over the bay area trying to find a copy of Mold Warriors. No one has it!

    I tried sending an email but couldn't get through. Anyway, thanks again.

    My body feels toxic so I need to find a way to clear these toxins out.
  9. Slayadragon

    Slayadragon New Member

    BTW, the one thing that seems really low here is your MSH.

    Rich van K suggested that methylation might help to increase MSH, and so perhaps that is a good thing for you to be doing.

    How is that going?
  10. redhummingbird

    redhummingbird New Member

    The methylation has been really tough. I started at too high a dose even though I thought it was really low.

    I've gone way downhill, probably worse than I've ever felt so far.

    I stopped the supplements last Saturday but my body is still toxic I think.

    I'm a tad better than I was last weekend.

    My doctor said to stop the supplements for a week or two. I'm going to resume in another week if I feel better. If not I'll wait.

  11. Slayadragon

    Slayadragon New Member

    I suggest considering a coffee enema, to start.

    waynesrhythm and I had a conversation about them recently. Look for a post from me, with his name in the title.

    I also recommend that those who feel like their body is detoxing faster than it can come out their liver/intestines and kidneys try foot detox pads. It's good for the body to try to put it through an alternative route.

    Erik is at cfsunited now. I will send you more info.

    The fact that you've gotten a big detox from the methylation suggests to me that you really need it. I had a huge reaction at first too. I don't know how much effect it's had on my getting better when I addressed the biotoxin (mold) issue, but I suspect it's been at least somewhat helpful.

    I wish I'd had these tests done before I started the methylation, and then before I started addressing biotoxins, just to see the comparison. It will be interesting to see what yours look like as you improve.

    I told my doctor that if he didn't get those tests ordered soon, I was going to be completely well and then we wouldn't be able to convince anyone that I was really sick.

    I'm going away for a month, and so I'm going to have to get the tests done either next week or when I come back. I'll see if he actually writes up the order form for me this week.

    Regardless, I think I'm going to see Dr. Mary Beth Short-Ray, an osteopath specializing in mold, in September. Hopefully I can get the tests done before then, but she seems like she will be useful in terms of the interpretation.

    [This Message was Edited on 07/25/2008]
  12. redhummingbird

    redhummingbird New Member

    This is starting to sink in. What a drag to have the dreaded genotype and low MSH.

    But you do give me hope slayadragon. I read where you mentioned to MOjoey that genotypes aren't destiny or something like that.

    After calling many bookstores I finally gave up and ordered Mold Warriors and also Desperation Medicine through Amazon. I ordered one day shipping so it better be here by Monday.

    I'm determined to beat this thing. I don't want to live the rest of my life like this.

    Lisa-I hope you can get the bloodwork done before you leave. If you don't though the good news is the results only take two weeks to get through labcorp.

    I had a strange dream last night about Lewis Carroll and Alice in Wonderland. Seems connected somehow.
  13. Forebearance

    Forebearance Member

    Oh redhummingbird, I'm sorry to hear about your HLA results. It's kind of shocking, isn't it?

    I still think it is better to know, though. Now you know what you are up against, so you can figure out how to beat it. And now you can understand why things have been happening to you.

    Knowledge is power, I think. So the more you learn, the more tools you'll have.

    Love,
    Forebearance
  14. redhummingbird

    redhummingbird New Member

    Thank you for your reply. It means a lot. It is shocking though not surprising. I had a feeling...

    It does help to know what I'm up against. I too belive that knowledge is power. I'll be glad when I'm able to speak with my doctor about all this.

    It also explains why I haven't responded to all the treatments I've been throwing at this illness.

    It's a lot to process. I'm bummed but not surprised.

    It helps though to know that there are people like yourself and others on this board who are on this journey.

    At least I'm not alone.

    So thank you.


    [This Message was Edited on 07/25/2008]
  15. Slayadragon

    Slayadragon New Member

    Did you get my e-mail from tonight?

    I sent it from my "real name" account.
  16. redhummingbird

    redhummingbird New Member

    I got your email.

    Ok-I'm having a hard time getting my mind around the coffee enema's. Do you think that is better than the colonix (I think that's the brand)?

    What brand foot detox? I tried looking through old threads but am brain dead.

    My brain fog has gotten so much worse since starting the methylation. How do I correct that one?

    It would be nice to have Dr. Shoemaker, Rich Vank, and a couple LLMD's in the room with me right now. I'd bombard them with questions-I have so many.

    All this stuff is linked and I think holds the clue to our illnesses.
  17. klutzo

    klutzo New Member

    Hi,
    you asked about the CD57 test. It is a subtype of the Natural Killer cells in your immune system. When it is too low, it is an indication of active Lyme Disease, and the lab is required to report low results to the CDC. I am not sure what constitutes "low", but I think it may be less than 60. I can't count on my memory anymore, sorry. You can find lots of info on CD57 at LymeNet.

    klutzo
  18. Slayadragon

    Slayadragon New Member

    The key to successful detox seems to be to keep all the relevant organs functioning well. This includes kidneys, liver, intestines and gall bladder.

    A brief summary for each.

    Intestines: Often people can get diarrhea at first, but sometimes this turns into constipation. Keeping waste moving through is key. Magnesium and high-dose vitamin C may be helpful. A fiber supplement (like the one in the brand "Colonix") could be helpful, but it's important not to take too much. More important may be a parasite killer (the typical sort made with wormwood, black walnut hulls, grapefruit seed extract, etc.). Apparently parasites grow well in a dirty bowel, and this can lead to peristalsis slowdown. To the extent that peristalsis is a problem, the laxatives of choice seem to be Lactulose (a mild prescription stool softener) and Perque Choline Citrate (an enhancer of acetyl choline....don't use if you have a tendency toward manic-depression or seizures). A really good probiotic can be helpful too, though it's hard to get one that supplies the high amounts that are needed. (My doctor compounds one that I use.)

    Gall Bladder: This is an area that seems weak for me, and that I've not paid any attention to until this past week. If the gall bladder is not functioning well enough to push all the gunk out into the intestines, it gets backed up. (In the case of methylation, the toxicity keeps increasing. In the case of cholestyramine, new toxins do not get pulled out.) Coffee enemas specifically stimulate the gall bladder to spit out the bile that has collected there. My experience is that lack of EFA's can cause a sluggish gall bladder. This means that EFA's are needed, though taking them can result in short-term worsening of symptoms as the bad stuff gets dislodged. (This seems to have been happening to me this week.)

    Liver: A variety of treatments target the liver. I think the best of all of them come from Traditional Chinese Medicine, and thus am inclined to go back to that just for this purpose. (TCM was of no help to me when I used it last year....it was way out of its league! Using it to promote functioning of specific organs is a more more reasonable approach than thinking it's going to be the answer.) By getting the toxins out of the gall bladder, coffee enemas can help to clear them out of the liver as well. Lots of other liver detox treatments exist.

    Kidneys: There are mainstream detox treatments for these too. I think that just using a lot of water is helpful. At one point when the methylation was going too fast, I was drinking something like 16 quarts of liquid at one point early on in the methylation, because it felt necessary. I was making a vegetable broth, which I was drinking along with a good bit of sea salt. Obviously that was too much detox if I had to be drinking that much liquid, but it was better than keeping it bottled up.

    Skin: The skin can provide an alternate route for toxins to come out of the body. When the other organs are overloaded, I think the foot detox pads can be helpful (and were helpful to me). The brand I've used are Takara, which I've purchased on the Internet. I don't know anything about the others, though at some point I'll likely buy a box. Baths with several cups of Epsoms salts and a small box of baking soda can be detoxifying. Saunas can too, though they can be on the intense side.


    I just started taking a seaweed juice called Limu, and am getting so much detox from it that working on these core organs seems like it would be a good thing for me. I'm going to make an effort to do that as my next project, therefore.

    The person on this board who I always turn to when it comes to this topic is waynesrhythm. You might find out more information about it by looking at his posts.


    I'm starting to feel like an idiot regarding these tests, but please let me ask one more time.

    For C3a and C4a, did you have LabCorp draw the blood? Or did you have Quest do it?

    If Quest, did you have to tell them specifically to send it to National Jewish in Denver, or did they just automatically send it there?

    And all the other tests (except the MARCONS one) were just regular LabCorp tests, right?

    Thanks!
    [This Message was Edited on 07/26/2008]
  19. redhummingbird

    redhummingbird New Member

    Thanks for the helpful information.

    For C3a and C4a tests I used LabCorp. I didn't get the C3a test done for some reason. LabCorp automatically sent the C4a test off to the National Jewish Hospital in Denver.

    I think with Quest you have to request that it get sent to the National Jewish Hospital.

    klutzo-thanks for the tip on CD57. I've been dealing with one test at a time. Mine looks low but like you said, it's hard to know what low is.

    Off to lymenet now.
  20. redhummingbird

    redhummingbird New Member

    That's cool you got these tests too. Did you get the HLA DRB test also?

    My MSH was 12. My MMP-9 is 739.

    My doctor is working hard to figure out what's going on with me.

    He wants me to restart methylation and then start Mepron and Clarithromycin.

    He said the MMP-9 should be 300 or less. Anything over that is high so your in a good range there.

    Did your LLMD order the MSH tests?

    I'm on lymnet. I'll have to check out the thread about the bionic 880.

    It's nice to hear from you!
    [This Message was Edited on 08/29/2008]