Slayadragon/Richvank can you help me with HLADR

Discussion in 'Fibromyalgia Main Forum' started by ulala, Sep 2, 2008.

  1. ulala

    ulala New Member

    test resultss?

    I just received my copy of Mold Warriors but don't understand how to translate my results. Is it the C3a or C4a that determines mold exposure? Thank you very much!

    DRB1 1104
    DRB1 1501
    DRB3 02CYUC
    DRB3 -
    DRB4 -
    DRB4 -
    DRB5 0101
    DRB5 -

    C3 92
    C4 22
    MMP-9 822
    VEGF 396
    MSH <8

    HLA-27 negative

    [This Message was Edited on 09/11/2008]
  2. richvank

    richvank New Member

    Hi, ulala.

    Your HLA DR DQ results translate (in Dr. Shoemaker's notation) to

    11-3-52B and 15-6-51.

    The first is one of those that he calls "multisusceptible," and the second is one of those he classifies as "Borrelia, post-Lyme syndrome."

    I'm not yet clear on the other indicators. Maybe someone else can help with those.

  3. ulala

    ulala New Member

    in San Diego. Does it make a difference if it wasn't done at National Jewish Center? I've also had a %CD4+/CD3+ that was High 59 at USC. I don't know if that's the same as the C3a/C4a?
  4. ulala

    ulala New Member

    I'm not surprised at these results. I've had two positive Igenex tests and am very hypersensitive to many allergens, esp. mold. I'm so happy that you could translate these for me. Hopefully I can understand some more from the xes of Mold Warriors Appendix now that I have the numbers that you gave me.

    Thanks again!!!!

    Best wishes!
    [This Message was Edited on 09/02/2008]
  5. Forebearance

    Forebearance Member

    I bet that if everyone on this board had the HLA-DR test done, there'd be TONS of people with the multisusceptible genotype.

    I think Dr. S. said that it's important to have the C3a and C4a tests done by RIA, and it sounded like the only place that did that test was the Nat. Jewish Hosp. in Denver. Yeah, I got the impression that he thinks it's more accurate.

    You really have to watch whoever sends in your blood samples, to make sure they specify the correct place to send them to!

    Well, this could explain why your C3a/C4a numbers are so much lower than everybody else's, Ulala.

    I was wracking my brain trying to remember if Lyme disease causes high levels of C3a/C4a or not. I can't remember Dr. S. saying anything about that.

    It seems like he left some of the finer points of diagnosing people out of his MW book, because he assumed that people were going to go see him or see some other equally experienced biotoxin specialist. Hmmm. You could get a consult between Dr. S. and your doctor, Ulala. You can sign up for it on It does require that you do certain tests. I think you've done most of them already.

    I don't know of other doctors who can diagnose biotoxin poisoning as well as Dr. S. can. I know Lisa is working with a doctor in Chicago, Dr. Berentson(?), who is very interested in this stuff. With time he might become a good specialist to go to.

  6. acer2000

    acer2000 New Member

    Quest has now screwed up my C4a/C3a samples for the second time. The first time the guy couldn't find them in the computer and just "picked" something that sounded similar. Right... anyways, the second time they were supposed to handle it from their regional office and had directions from my Dr. and Dr. shoemaker's office (who my Dr. had spoken to) to send it directly to National Jewish and they seemed to have lost the sample and it never got there. Both times they failed to call my Drs. office and tell them to redraw the blood, and we only found out this week, after waiting over a month for the results (and 2 weeks the first time). I would not go to Quest for these labs. I dunno if Labcorp is better, but it can't be much worse!
  7. Forebearance

    Forebearance Member

    That's good to know, joey. Thanks. Was that in Desperation Medicine? I don't remember reading it in MW. But then my memory isn't all that great.

    I can't believe it, arosenbl0! How could they mess it up twice and not tell you!? I think from what I've heard people say that getting those tests done at the right place depends a lot on the competence of your regional Quest office. I know my doctor's lab manager spent a lot of time on the phone with our regional Quest office getting it sorted out. Curses!

  8. ulala

    ulala New Member

    doctor to re-order the C3a and C4a and make sure that they go to National Jewish Center. Who is your doctor that you see in L.A. Are they familiar with Shoemaker’s work? I don’t know of any doctors in L.A. who follow his work.

    I also don’t know anything about the multisusceptible gene and haven’t found anything about it on the internet. There is also no reference to it in the index of Shoemaker’s MW. I assume that he discusses it in his book but I haven’t found it yet. I’ll have to go back and see what my past C3a and C4a have been..Thanks for posting that info!

    I’ve been exposed to both mold and lyme and have had two positive Igenex lyme tesss. I think that having Lyme and also being exposed to high levels of mold is a deadly combination. Especially if any steroids like prednisone are added to the mix. I had falled in 2003 and had 7 epidural shots, which wee cortisone. I think I was close to death.

    Forebearance-I brought Shoemaker’s printed lab sheets in with me and asked the techif they would go to NJC. He said the lab would know where to send them. I then called LabCorp. They said that unless the doctor specifies where to send it the tests are run by LabCorp. I don’t know if my doctor will order them again. I do want her to have a phone consult with him. Can you explain the multisusceptible gene to me or tellme where I can read about it. Is that what people have referenced as the “dreaded gene”?

    I agree that Dr. S. probably left out some of the puzzle pieces in his book. Lisa’s doctor sounds like a very caring, and thorough doctor. Unfortunately I live in L.A. I’ve used all of my miles to fly to Boston to see an eye doctor.

    arosenbl0- that is maddening that Quest screwed up twice! Don’t they realize what the patient has to go through to have to continually come back? So many of the workers today don’t really care. They’re there just for the check. It’s really too bad. If you go to LabCorp make sure that your doctor specifies on the order that the specimen be sent to Nation Jewish. Good luck!

  9. acer2000

    acer2000 New Member

    So I went to labcorp and asked them about the C3a, C4a, and MMP-9 tests. These are the ones that got screwed up for me. It turns out that the MMP-9 test comes up fine in their computer, and they actually send it out to Esoterix lab, so thats good. The C3a, and C4a don't come up when they search for them, but if you give them the codes that Shoemaker has on his PDF on, they show up and they can order them. They are sent out to National Jewish, apparently and done by RIA method. I wish I knew this before, I would have just done all the tests through labcorp.

    And yeah, Quest screwed up royally on this one. Not only did they mess up the tests twice, there was no communication about them at all... I wouldn't go back there.. Given, they were rather rare tests... but if they couldn't do them right, they should have just said so, and I wouldn't have waster 2 months chasing them down.
    [This Message was Edited on 09/06/2008]
  10. ulala

    ulala New Member

    And I'm sorry that you're having to go through this because of Quest's mistakes. It's interesting that LabCorp sends the c3a and C4a to National Jewish if you write the codes. Mine didn't have any codes and it went to LabCorp to be processed.

    We have to be so proactive and check and re-check because, as I said before, so many staff members are there just for a check. I think it's always important to get the person's name who gives you the information. Then they can be held accountable for incorrect information that they give us.

    I'm going to have to try to get my doctor to re-order the tests. She's probably going to think I'm crazy!

    I hope you get this resolved quickly and get your results correctly this time.

    Best wishes!
  11. Forebearance

    Forebearance Member

    I really hope things go well for you guys this next time with your blood tests.

    That is very interesting about the "secret" codes for the correct tests at LabCorp. I noticed that the codes Dr. Shoemaker uses do not show up on the LabCorp website in their list of blood tests available.

    And I remember that Lisa was having some difficulty getting her doctor's LabCorp rep to find the correct C3a and C4a tests.

    Are neurotoxin patients the only ones who are getting these C3a and C4a by RIA tests? Are they rare tests? I wonder.

    Ulala, I remember Dr. Shoemaker mentioning the multi-susceptible genotype in a few places in his Mold Warriors book. I can't remember where, though. He mixes the technical info that we want to know in with all his stories about his patients. So you end up having to read the whole book in order to get all the info out of it. Argh, I know.

    I'm hoping that his next book, which is supposed to be published soon, will be more straightforward and clear and easy to read.

  12. Rrrr

    Rrrr Member

    i've posted this same note on three threads on this board because i don't know the "right" one to post it on...

    regarding the
    c3a c4a test

    from my doctor's office:

    Hi Rivka,

    Quest called back. They do not use National Jewish Center
    anymore and therefore do not send any specimens anymore. The specimens
    were sent to Quest Nichols, CA this morning. The test codes that were
    written on the doctor's order matched up with the test codes that were
    sent to Quest Nichols. Karen x 378. Not sure where to go from here if
    we need to cancel the test or not.

    does anyone know what the next step is? So we can't use Quest for this test? i guess i'll follow the person who posted above's advice: go to LabCorp and hope they send it to the right place, if i request that.

    can anyone tell me the LABCORP codes for the C3a and the C4a? i only see the code for C4a on shoemaker's PDF.

    [This Message was Edited on 09/10/2008]
  13. Forebearance

    Forebearance Member

    Here you go, Rivka:

    LabCorp's codes:

    C3a by RIA is 840702

    C4a by RIA is 857334
  14. Rrrr

    Rrrr Member

    i called my local labcorp. they told me they DO NOT do this test... i have to re-check...

  15. frango2

    frango2 New Member

    I'm curious... Why did they say don't do this test?