Any one ever had their IGG levels checked by immunologist?

Discussion in 'Fibromyalgia Main Forum' started by hubcap_halo, Apr 23, 2008.

  1. hubcap_halo

    hubcap_halo New Member

    It just struck me as odd that I've never been to an immunologist. Have you?

    If so, what did they say about your case? What did they say in general about ME/CFS?
  2. wrthster

    wrthster New Member

  3. GeminiMoon

    GeminiMoon Member

    I just went to an Immunologist for the first time this week and had 14 different tests through bloodwork. I don't have results yet but will post when I have more info.
  4. hubcap_halo

    hubcap_halo New Member

    I'm glad you did it. Please post your results and how it went.
    I wish you the best of health.
  5. tooks

    tooks Member

    There is a great immunologist at Mt. Sinai--Dr. Charlotte Cunningham-Rundles. She heads the immunodeficiency program and is a really good people person. I should know--she was one of my college room-mates. Google her--she is famous.
  6. wrthster

    wrthster New Member

    Has she had any good suggestions or been able to help you?

  7. hubcap_halo

    hubcap_halo New Member

    Thank you so much for the suggestion. I'm going to contact Dr. Rundles....

    Enjoy your island.
  8. hubcap_halo

    hubcap_halo New Member

    To see Dr. Rundles one just needs to have a letter from another doctor with recent bloodwork to get an appt, but I can do that.

    Thank you so much for the suggestion!
  9. mshvan

    mshvan New Member

    Mine are low.

    The total IGG is a bit low, and sublclasses 1 and 3 in particular.

    Subclasses 2 and 4 are at the low, low end of normal.

    I just started seeing a really top immunologist at UCLA. They think these IGG levels are very significant. Their main concern is Common Immune Deficiency, when these readings are low.

    When I found out how important this measure was, and particularly related to the sort of illness we are all here talking about--I was a bit surprised this hadn't really been looked into before by my army of doctors.

    However, so far, I don't seem to show the other markers for this kind of immune deficiency. And one of the hallmark symptoms are constant upper-respiratory infections. And that's one thing I have NOT had since I got sick.

    But for me, it may lead to a run of IVIG treatment. They've talked about it a bit.
  10. tooks

    tooks Member


    I have not ever seen Dr. Charlotte Cunningham-Rundles as a patient. She is an old friend from university and I was astounded when I opened a copy of New York Magazine a few years ago and saw her listed as one of the top ten doctors in New York--especially known for her personal touch and empathy with patients.

    I re-contacted her then (it had been many years and I didn't know exactly what hospital she was at) and have exchanged emails occasionally since. Incidently, Mt Sinai "stole her" from Sloan Kettering! He photo in magazine looked just like she did in University, so she must have her own immune system up to snuff.

    Good luck with your appointment hubcap and if you are the person I wrote to on the Yahoo site, let me know.
  11. ladybugmandy

    ladybugmandy Member

    hi all. i saw an immunologist who heads up the HIV clinic here. this doctor was one of the 1st guys 20 yrs ago who was trying to identify a new virus as a cause of CFS. he failed.

    i saw him when i 1st got sick...he was sympathetic then but couldnt help much. i saw him again recently.

    now, he seems to pretend CFS is not a real illness or one which is not that debilitating. he barely gave me the time of day. he did not know what RNase L was and did not seem interested in learning more.

    i had extensive immune testing done through dr. leo galland in NYC but was not told about any IgG deficiency. i was wondering about this myself. i thought this could be a cause of my not being able to put my EBV into latency.

    i don't think the IgG was abnormal for me..but i am not completely sure.

    sounds like the UCLA people are great!

  12. mshvan

    mshvan New Member


    I feel extremely fortunate to have found the two doctors at UCLA. I still see Dr. Galpin, who I also think a lot of. After some particular tests, Galpin recommended that I see an immunologist/rheumatologist. I'd seen one before, and he sort of sent me packing. So, I did a ton of research, trying to make sure that I could see a specialist that had some real experience dealing with things like this. And I'm trying to avoid just taking drugs to get me through each day, pallative care. If there's any way I can get to the ROOT of this, I want to pursue it.

    The doctors that I see at UCLA, in particular, have done some work on CFS-type illnesses that are actually something diagnosable. That is, illnesses that manifest like CFS, but are something that can actually be treated in demonstrable ways. Hopefully.

    There are no real answers yet, they are not promising me anything. But I have to say, they are the most responsive doctors I've ever seen.
    [This Message was Edited on 05/29/2008]
  13. ladybugmandy

    ladybugmandy Member

    may i ask if you have had your antibodies to herpes viruses tested?

    thank you
  14. mshvan

    mshvan New Member


    Epstein Barr, high titers. Though a bit closer to normal (exposed-normal), the last time it was checked. All the others, HHV, cytomegalavirus, etc....negative.

    Also testing positive for Parvovirus and Mycoplasma pneumonia. Active or not, I'm not sure. That's such a dodgy area.
  15. ladybugmandy

    ladybugmandy Member

    hello!....may i ask how your CFS started? that is a major clue also....

    sorry i forgot to ask before!

  16. hubcap_halo

    hubcap_halo New Member

    I don't remember receiving any messages on yahoo, though I think I joined an ME/CFIDS group last year.

    Thank you so much for the referral. I'm going to see your friend if I have to get a an MD (I'm just 1 credit and 9 academic years shy of it) to write myself the referral.
  17. tooks

    tooks Member

    Let's see, I don't want to blow any identities here but someone gave me the email address of one of Dr. Vrchota's patients that sounded like you and I wrote to them yesterday from a yahoo address but not to a yahoo address. So if you have more than one email address, check them, just curious to know if it was you I wrote to.

    As far as islands, the island I am on was totally unspoiled and beautiful about 50 years ago. Then people discovered it and started living there and then vacationers started coming...well it is still 3/4 National Seashore and a good bit of the rest of it is protected from building, and the part I am on is less populous, a mile from the National Seashore. Since the last hurricane washed away the car-drivable aspect of the road through the national seashore, it is closed to all but bikes and walkers. That is Good! I can ride down there and nothing but dunes and sea on both sides---and pelicans galore with a sprinkling of herons. Really gets things in balance.
  18. mshvan

    mshvan New Member

    Hi LBM,

    I think if you look back into my history, I think you'll find my story.

  19. hubcap_halo

    hubcap_halo New Member

    Are you flying up to MN to see Dr. Vrchota? That's great.
    She's amazing.

    I think we're in touch now.
  20. tooks

    tooks Member

    We're in touch. Would like to fly up to Minn. to see Dr. Vrchota but don't know if I can swing it. Especially if I decide to buy that BioMat. Out of work for 3 years. I'm hoping she might do a phone consult without seeing me--any ideas? I really just want help working with Rich's protocol. I'm pretty up to speed on the rest of it.

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