Immune Disorder

Discussion in 'Fibromyalgia Main Forum' started by mshvan, Jul 23, 2008.

  1. mshvan

    mshvan New Member


    So, after 2 years of round and round with "CFS" or something like it, I was diagnosed with Specific Antibody Deficiency. Also (and it's related), IGG subclass deficiency. The doctors (I'm seeing a lead doctor at UCLA) are certain that this is responsible for my symptoms.

    The only treatment for it IVIG. They explain to me that it's somewhat analogous to insulin for diabetics, except this 'insulin' costs $8,000-$10,000 per treatment. Apparently, the expectation with this illness is that it would be monthly treatment, and life long. However, my 'onset' of this illness is pretty unusual (that is, I was very healthy my entire life until this, that's not normally the case)--so there is a slim chance that some time in treatment may actually bring me back to normal, and I wouldn't need it for the rest of my life.

    The doctors (immunologist/rheumetologists) are very optimistic (though not promising) that this treatment could very likely lead to a complete reversal of symptoms.

    Of course, my insurance is fighting this tooth-and-nail. I'm currently applying with the state to fight the refusal. Blue Shield actually is simply denying the doctor's tests and diagnosis. My doctor says they are simply lying, as simple as that, to avoid paying.

    Has anyone else had experience with any of this? I'm not sure if this specific diagnosis takes me 'out' of the CFS world.....haha, I'll have to find another support board.

    But has anyone else had their IGG subclasses tested, and/or had the tests for specific antibody deficiency? They do that by testing your reaction to staph, strep, and pnuemococcus.

  2. mshvan

    mshvan New Member

    Thank you very much. This is a support board, but....people really are supportive and sweet here. I appreciate it very much.
    [This Message was Edited on 07/24/2008]
  3. mshvan

    mshvan New Member

  4. moreinfoplease

    moreinfoplease New Member

    I know that can be very difficult.

    Unfortunately, I do not know about the disorder you have been diagnosed with.

    But I am interested in knowing more about your experience. Which of your CFS syptoms lead your drs to the tests they did?

    I wonder if others out there could have the same problem but not know it.
  5. mshvan

    mshvan New Member

    The infectious disease doctor I was seeing did a cytokine (inflammatory) panel on me. My various autoimmune markers were all okay, but he went ahead and tested the cytokine profile.

    The cytokine profile was pretty crazy. SOMETHING was going on with my immune system. So, he had my IGG levels checked.

    A follow up with a rheum/immunologist led to them testing my IGG subclasses. The cytokine results at that point also sort of supported the diagnosis.

    So, then, they checked my body's response to some standard things...

    Truthfully, I'm not sure I understand why some of this wasn't checked at some point in the past. My "cfs" type symptoms ARE often symptoms of a diagnosable immune disorder....
  6. Rafiki

    Rafiki New Member

    There's a very good explanation of your condition at the above location. They even get into why there is a debate re treatment.

    It would also provide info for anyone else who feels this may be a problem for them. I'm thinking of those with recurrent ear, sinus or lung infections.

    I really hopes this leads to much better health for you.

    Peace out,

  7. mshvan

    mshvan New Member


    Thanks for that.

    You know, it's odd. I didn't have any of the 'normal' onset. I did NOT have years of upper respiratory infections. As a matter of fact, since I got 'sick' I haven't had a sinus infection or anything bronchial. The doctors said that is part of why it may have taken so long for this aspect to be checked.

    I was also remarkably healthy before this all started. (started with a 'flu')

    I have an 'atypical' presentation all around.

    I think the thing that really triggered their looking into this was that I have symptoms of parvo and very high titers. And my doctors had some experience with people with post-parvo infection long term issues. My symptoms match some of them pretty closely--more closely, in fact, than classic Specific Antibody Deficiency.

    You know, here on the board, and in the CFS world, there is a lot about EBV, viral triggers. But if you look at Parvo--holy smokes, there is some real data on its possible long-term effects, etc.

    it MIGHT be that the thing that I have the specific deficiency for is in fact, Parvo--but there's not real way to tell.

    thanks again.
    [This Message was Edited on 07/24/2008]
  8. Rafiki

    Rafiki New Member

    I'm surprised to hear you weren't getting lots of upper resp. stuff as many here do and this is a good explanation for that.

    Are you, like me, someone who seems to "catch" nothing since the viral onset?

    Perhaps something else is amiss in your immune system (upregulation as per Cheney) which...

    I'm lost; it's too complicated for my little brain.

    I've been looking in Celiac and find that many people cannot easily get an accurate Celiac test because they are IgA deficient.

    You seem to grock this stuff far better than I!

  9. Lichu3

    Lichu3 New Member

    When I was looking at parvovirus a while ago, there were one or two past reports coming out of UCLA about successful treatment of chronic parvovirus treatment with IVIG.

    Wonder if those are the same docs you're seeing?

    I don't have the full report so I don't have details.

  10. mshvan

    mshvan New Member

    Yes, it's the same doctors.

    However, I want to make sure I'm clear about diagnosis is NOT parvo. The parvo issue is wrapped up in the details, and it was my infectious disease doctor (not a UCLA Doc) who found the Parvo, and subsequently did the immunoglobulin testing.

    I went to UCLA after my ID doc suggested I see an immunologist. Also, I have an uncle who is a gastro doc, and I had spoken to him. His strong opinion was that, after a year of getting nowhere, I get into a university hospital setting.

    So, I went to UCLA, and somewhat by chance, I am seeing the doctors who did some of this work on Parvo. I've asked them some about it because it is interesting. It would be MORE interesting if I could learn about it from a distance, rather than as a sick person trying to figure out what the heck happened to me.

    There is a lot on the internet from a Dr. Kerr who has extensively studied Parvovirus leading to CFS type issues. Dr. Kerr is NOT UCLA-affiliated, I think he's in England.

    I know at UCLA, as well as some other large institutions, the concept of CFS is somewhat problematic. I think most places believe that some number of things can happen to a person to cause these symptoms, but in general, I think they're pretty by-the-book as far as finding a definite root cause that makes sense to them. This is not to say that they're not open-minded, because my doctors in particular. HAVE been open minded. But they also have told me that if they hadn't found these definite, known, diagnosable issues with my immune system, they likely would not have had much help to offer me.

    [This Message was Edited on 07/25/2008]
  11. marti_zavala

    marti_zavala Member

    but I think you are paving new ground in terms of experience here. I believe that many here would have similar results if they were tested as you have been.

    I wish for you that it was Parvo and could be eliminated.

    IVIG has been used extensively in the MS community and to a lesser extent in this community.

    Perhaps you could get some info/help on how to fight the insurance company successfully if you checked a couple of MS boards.

    Not chasing you away but it sounds like you need some answers.

  12. mshvan

    mshvan New Member

    Thanks very much Marti.

    Yes, I would say, after my experience, that in general I would tell someone who is sick with this kind of mystery illness to have their immune system fully checked out. Because I have an atypical presentation, especially.

    I'm still skeptical and etc, because I've chased down a number of other false leads. But they seem pretty certain about my diagnosis. If it was parvo that my immune system cannot mount a defense against, I think I would have a better chance at resolution without a lifetime of IVIG. It's an outside chance, though.

    The issue with insurance is that IVIG is phenomenally expensive, and this diagnosis normally leads to a very long term course of IVIG.

    My guess with the up and down results of IVIG is that....CFS and related diseases...I think I agree with the thinking that there may be more than one etiology to it. So, certain treatments work for certain root causes.

    As far as my access to IVIG. It's a very, very tough road. I've researched it extensively, used about every bit of my available energy trying to get to some answers. I won't get into the details, but I've been fighting for 4 months already. I am going to pay for a treatment or two (that's still cheaper than what I spent at Holtorf) see if I get any improvement in symptoms. In the meantime, I have a final insurance appeal pending. After that....there's not many options to access to treatment.

    (I know you're not chasing me away)


    (PS. You're in LA, right? I had a work colleague whose last name was Zavala)
    [This Message was Edited on 07/25/2008]

    PPS. Just to jump on another bandwagon here, I am also going to start the low-dose naltrexone. My doctor thinks it's plausible that it might help some of the symptoms. He's hardly sure, but thought enough of the research (and the lack of danger in trying it) to say, 'sure, let's try this too'[This Message was Edited on 07/25/2008]