A question for Forebearance on HLADR testing

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Jul 11, 2008.

  1. Missizzy

    Missizzy New Member

    Forebearance--Thank you for replying to my previous post on connections between MS, ME, and bipolar. I'm very interested in the HLA-DR test you mentioned. I googled the test and came up with information related to MS, bipolar, ME, and most shockingly, Beckwith-Wiedemann Syndrome. This is the syndrome our baby granddaughter (daughter of one of my affected sons) died of soon after her birth last year. An autopsy was done with the doctor knowing all about our families fight against MS, ME, and bipolar but no connection could be found. BWS is caused by a genetic defect (shown to come from my son) which causes the mother's natural insulin to somehow create an over-growth of cells and organs. My son and his wife have two healthy little boys, however.

    I have a hard time fully understanding scientific information but what I'm wondering is whether this is a basic sort of test or a "specific" one. In other words, is it of importance that these syndromes and disorders can all be detected with this test or does the test show all sorts of things. Can their be a "link"? I'm also wondering if this test in any way shows markers of spinocerebellar ataxia (another of my diagnoses).

    If you get a moment, can you explain just a bit more, please. Also, is this a test that would be covered by insurance? If not, do you know the approximate cost?

    I would also appreciate anyone else's input on this question. Thanks so much!!

  2. Slayadragon

    Slayadragon New Member

    Oh, I have a question on this too.

    Yesterday Dr. Berndtson and I met with the Lab Corp rep. She had gone to a lot of trouble to research all the tests (which is not surprising since she wants Dr. B to send her more patients in general).

    The rep seemed to think that she could get all the tests run except maybe the C3a and C4a. She was going to check on this more.

    Both she and Dr. B seemed a little perplexed about the MARCONS one. She seemed to come to the conclusion that she could get it done through Lab Corp, though I'm not absolutely convinced that it will be the one that Dr. Shoemaker wants.

    Do you have any idea if there's a reason why Lab Corp shouldn't run the tests that Dr. S assigns to Quest?

    How was your C3a and C4a handled?

    Do you know anything about the MARCONS nasal swab one, even though you've yet to have it done?

    I'm going to put this on the one you started for arosenb10 too. He appears to have gotten an ear-nose-throat dr. to do the nasal swab and then sent it off to the Maryland lab that Dr. S uses. I wonder why he had to go to an ENT for it though. And also what the code is.

    I would just call Dr. S's office, but arosenb seemed not to get a good answer from them.

    I wish the directions for these were clearer! It's kind of amazing that as many people get them done as manage it.
  3. Forebearance

    Forebearance Member

    Hi Miss Izzy!

    Well, I am still learning about all this stuff too. Dr. Shoemaker talks about the HLA-DR test in his book "Mold Warriors", but he doesn't go into a super lot of detail about it.

    I didn't know about all those associations with it! Wow, and I just saw that Wikipedia has had a major update on their HLA-DR page! There used to be a cute little picture of chromosome 6 on there.

    It is a basic test that just tells you what you've got. It's like a blood type test. You have what you have.

    It's up to doctors and researchers to tell you what it means. I suppose they will keep discovering more about what it means all the time.

    It sounds like it would be really interesting to find out what genotypes your family has.

    I'm so sorry to hear about your granddaughter.

    Basically, they look at five locations on Chromosome 6. What you have in those spots usually falls into a pattern that occurs in other people, too. So they call the recognized pattern a genotype.

    It's possible that a tribe living in a remote location could be tested and they would find a new genotype. But so far, they work with what they've found, and they know what some of the known genotypes mean.

    My insurance was happy to cover it. Labcorp is a well known lab. But I have a large deductible, so I paid for it myself, at the insurance company's rate. It plus the MSH test cost $142.68 I thought that wasn't too bad for two high-powered tests.

  4. Forebearance

    Forebearance Member

    I followed the list on biotoxin.info about where to send the lab tests. There's an older version of the lab test list in the back of "Mold Warriors", too.

    My C3a and C4a were done at Quest, and they send them to Jewish hospital in Denver, as Dr. S. wants. Whew! I was sweating bullets about getting all the tests done properly, and overall I think I did okay.

    Even though I had to annoy the lab manager at my doctor's office a bit in order to do it!

    I know, that MARCONS test stumped my doctor, too. She hadn't heard of it. Are we ALL going to have to call the University of Maryland? lol

    It seems like Dr. S. recommends everything be done in ways that are really convenient if you live in Maryland, but if you don't live there, then it's not so convenient. Does he expect everyone with neurotoxin poisoning to come to see him?

    [This Message was Edited on 07/12/2008]
  5. Slayadragon

    Slayadragon New Member

    Dr. S has had 6500 patients come to see him so far. Probably those are the only people (except us) who've had the tests done too.

    Getting C3a and C4a done by Quest will be easy, since there are lots of them around.

    Do you think I should be as careful as possible prior to the test regarding avoiding mold, so that maybe the C3a and C4a levels are as low as they possibly can be?

    Or maybe just do ordinary mold avoidance, to see how I am "on average" these days?

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