Question for Swedeboy

Discussion in 'Fibromyalgia Main Forum' started by mshvan, Jul 26, 2008.

  1. mshvan

    mshvan New Member


    I was looking through some old posts...I had a couple of questions for you.

    Have your IGA and IGG/IGG subclass levels been checked?

    I was reading about your IVIG experience, and wondered if those things were checked either before or after?

  2. mshvan

    mshvan New Member

    Hi. Thanks.

    Did you have IVIG for the post parvo? There's a lot on Parvo out there.

    It's all a bit confusing...I think the parvo aspect, for me, is a side issue. But one they have brought up a number of times.

    Since insurance has been giving me the finger, I asked my doc about colostrum. The kind of funny thing was that he thought I was talking about trying to get early-term human breast milk. He actually said it was plausible that it could help people with this diagnosis, but told's hard to get, and talked about breast milk banks closing due to AIDS, etc.

    At this point, I realized he didn't know I was talking about the bovine extract/supplement you can buy.

    It was a bit funny. I told him I might get arrested trying to get human breast milk.

    He was a bit more skeptical about bovine colostrum.

    I don't think there's a real alternative to IVIG. There's really not much that is even purported to raise IGG levels.

  3. mshvan

    mshvan New Member

    The only treatment for Parvo is IVIG. So, anyway, if Parvo was the issue for me...or part of the issue....the IVIG (for Selective Antibody Def) would kill two birds with one stone.

    My doctor thinks it's possible that Parvo is the thing (or one of the things) that that I have a selective inability to fight. He said entereoviruses are also often culprits.

    The thing with these....viruses....he explained to me that, after a time, they can take up residence in some body system (bone marrow, muscle...many possibilities)....and that it would be difficult and very intrusive to really try to FIND exactly what is working a person over, virus-wise. My cytokine panel, in particular levels of IL-6, IL-1, and IL-2 lead him to think it's a viral attack.

    I do think there's a case to be made the my IG levels have been 'depleted' by being sick for so long. so much else, hard to prove, and even if it could be's not necessarily helpful.

    Insurance. The overlords. The leg they have to stand on is that somewhere, in their phone-book size contract, on page 759 or something....they clearly state that they only will pay for the use of IVIG in very limited (and getting more limited all the time) circumstances. They can't be forced past their policy. I told my doctor, 6 years ago (when I bought the insurance), I never would have known what any of this was, let alone imagined I'd need it. There's hundreds of pages of OTHER restrictions as well. They also send long addendums about 3 times a year.

    IVIG is very, very expensive. And my docs said to expect to need it long term (lifelong perhaps). It's analogous to insulin for a diabetic. There are SOME cases of a total reversal after a year or two of treatment, but I've been warned not to plan around a miracle.

    I have one more work around to access. I am going to see if 2 courses of IVIG will help, I'll pay for these out of my pocket. I still haven't tried it, so I'm not sure it will help me. The docs have told me that they much-more-often-than-not see significant improvement in cases like mine, up to often seeing a complete reversal in symptoms.

    We'll see. It will take about 45 days for me to know if my insurance options are exhausted (it may be shorter, but the last appeal took that long).

    IF IVIG makes me feel much better, and I cannot get it here, I am strongly considering moving out of the country to somewhere where it can be obtained more easily/cheaply. I have some close ties to Argentina, and my friends down there are looking into my treatment options should I become a citizen. It's a pretty extreme plan B, but I'm in a pretty extreme situation.

    I think most people here would feel like this....I told my doctor, if he told me to eat worms and dirt, and I'd feel better....I'd do it. If that means I need to find access to IVIG, and it gives me a somewhat normal life again....I'll do it.

    If you hear about a big heist of IVIG, please don't tell anyone about me.


    PS. do you really think swedeboy is out on the town?[This Message was Edited on 07/27/2008]
  4. deliarose

    deliarose New Member

    He's been using this for autistic kids.

    He presented at the last Autism One conference.

    Bryan Jepson mentioned the treatment in his new book on autism and one of the things that stuck with me was that some evidence suggests the gains are lost when the therapy stops.

    But I don't know if it was that way for everyone. Just one of those snippets that stuck in my brain.

    One of the fathers in my yasko group is doing IVIG for his son....paying out of pocket too.