IVIG

Discussion in 'Fibromyalgia Main Forum' started by cristine04, Jan 24, 2007.

  1. cristine04

    cristine04 New Member

    Hi there,

    I was one of the people who was hit hard with a viral infection. I never fully recovered although I was at around 50% or so of my "old self." I could take class part time, drastically cut my work-outs..you get it.

    I then had a flu vaccine which blew my condition open. I went from 50% to 10%, hospitalized many times, meningitis, pneumonia, cellulitis.....Severely sick still, four years later. I'm talking the unable to work part or full time, need help ambulating sick.

    I read an article that said people who are unable to "seroconvert" can have horrible illnesses that mimic the severest form of CFS. The immune system is left hyperactivated from the vaccine b/c the body never reacted properly to it.

    I then came across another article that said IVIG can help those who became ill after vaccines. I guess the idea is they provide the missing "antibodies."

    Thoughts??

    Anyone done this?? Esp. anyone who did it following an illness that began post vaccine??

    Does this sound like a neat idea?

    THanks!

    [This Message was Edited on 01/26/2007]
  2. AllWXRider

    AllWXRider New Member

    but I also read that viruses can't be killed either. They are neither living nor dead...just like the Nazgul from Lord of the Rings.

    The Brits had an article about small pox vaccine that wasn't really dead but comes alive sort of later on.

    Something in us CFS/FM ppl weakens the immune system. Toxic metal build up is part of the picture.
    Some think its a viral that weakens the gluthanine levels in the liver detox, others that toxic metals use up the detox gluthanine.

    I would get a hair analysis done to test for toxic metals so you can rule that out. They cost ~$60. I got mine from 1to1vitamins.

    Viral testing is expensive, so insurance is your only hope there. I lost my job over CFS. My wife supports me.[This Message was Edited on 01/24/2007]
  3. elliespad

    elliespad Member

    By IVIG, do you mean Gamma Globulin injections? If so, I have heard of it helping, even CURING people with Autoimmune diseases, like Myasthenia Gravis.

    Back around 1990 ish, I was seeing a VERY BRIGHT young Family Doctor, who had a good female friend in college, who became severly incapacitated by CFIDS while they were in college. It became a special interest of his and he had some good ideas back then. One was to give me Gamma Globulin injections, B12 and Magnesium. Well, I only got one GG injection, as Operation Desert Storm was getting under way and the government halted all civilian treatments using GG, unless it was life threatening. So, I never got any more. And I never had any benefit from that one.
    [This Message was Edited on 01/24/2007]
  4. cristine04

    cristine04 New Member

    Yes, I am referring to Intravenous Immune Globulin.

    What is IVIG?

    It is a collection of Y shaped antibodies called IgG as shown in the above cartoon.

    This plasma product is formed by taking antibodies from about 20,000 donors and mixing them together. These have proven effective in several immune system disorders, including nearly all autoimmune conditions including CIDP and GBS. The sooner you can treat the patient the better the results. There is a window of opportunity usually within the first 18 months during which IVIg administration is ideal. The longer you wait to treat with IVIg the longer it will take for IVIg to work.

    After being exposed to toxins and poisonous chemicals including carbon monoxide the body's immune system may mount a attack on the body. This autoimmune attack can be reduced by IVIG.
  5. cristine04

    cristine04 New Member

    Anymore information?
  6. wrthster

    wrthster New Member

    Hi Cristine04,

    It is interesting you bring this up, I am starting treatment in three weeks. There are pro's and cons, I think you should read a lot on it. It is not a light decision, but mine was decided because I know my immune system is not working properly and my IGG subclass levels or below normal. I have tried everything else imaginable and feel I have to go ahead with this. I think CFS and FM are such a broad diagnosis, there is a lot of variation from person to person. After reading on it, I would find a good Infectious Disease or Immunologist to check your Immoglobin levels, not just total Immoglobin, but your subclasses. Read my post below, and that will explain it better. Best of luck in your decison.

    A lot of insurance companies will not pay for it, I do not know about the interferon you should check with the doctor regarding the criteria. For example, with IV Gamma Globulin: The Doctor needs to measure what's called your IGG subclasses (an Immunoglobulin G subclass Panel): which consist of subclasses 1,2,3 and 4, and you show deficiency in two of the subclasses, maybe even one, that is half the battle. Then he must do another test called a pneumococcal IGG antibody panel. Depending on how you react to that test coupled with the subclass panel you would now be considered by all standards to have what is called and Immunodeficiency which would make it extremely difficult for any insurance provider to deny. If they do, after those tests are run, and if they show you have a true immunodeficiency, I would take this to the state insurance commission, your local congressman and retain a Personal Injury Attorney who only charges upon collection. I know this is a lot, but Gamma Globulin is very expensive, one treatment is not enough. SO @ $3000 per month, that can add up very quickly. Almost none of the insurance companies will pay for what is called "off label use", like a diagnosis of CFS. However, I would bet that many of you can show a true Immunodeficency which is considered a 100% recognized use of gamma globulin. I hope this is helpful and sorry for it being so long. Best of luck to all!!!


    BACK | REPLY

  7. u34rb

    u34rb New Member

    So if someone has an IgG and it's in the reference range, is this an average of the values for the sub classes 1, 2, 3 and 4?

    In other words, I've never had my sub classes measured, but my overall IgG has for several years been in the reference range. So is it possible that one or more sub classes are lower than normal, but that it doesn't show up because the other classes are high enough so that the average value is normal?

    And is it the case that if one or more sub classes are deficient that I might benefit from IVIg?
  8. cristine04

    cristine04 New Member


    Thank you for your post! I look forward to following your progress on IVIG and will pray for you. Luckily it seems that the side effects are relatively rare and issues that do arise seem to be able to be addressed w/ medication (for headache or for nausea) or by slowing the infusion rate.

    I am thinking of going down this route very seriously. I have to get a lot of testing done first but my doctor says I already have a few "warning signs" for immune deficiency. First and foremost I catch infections all of the time. And I mean serious infections like meningitis, cellulitis, pneumonia. I have a chronic fungal infection too and I pick up flu's and colds very easily. My family wears masks around the house to protect me if they feel even the slightest bit sick. (Many people on this board say they don't catch anything-I'm the opposite). I also had very poor vaccine response to a flu vaccine in 2002. (My illness drastically worsened after receiving a flu shot. He wonders if I ever seroconverted or if my immune system is in chronic attack-mode). I've also had an M-spike in my lab work. He said this can be linked to IgG deficiencies. Finally, I had a SIgA test which showed extremely depressed IgA. But this was saliva and I'm not sure how reliable it is. I did have a quantitative analysis done two years ago on the IgA, IgM, etc etc and they came back normal. But my doctor said this doesn't mean I don't have deficiency.

    In terms of the M-spike I read up on it and found it in the research at this link about IgG deficiencies:

    http://www.emedicine.com/med/topic1161.htm


    (It's an article by Janet Vafaie, MD, Staff Physician, University of Medicine and Dentistry of New Jersey, Department of Dermatology, New Jersey Medical School).


    "IgG subclass deficiency may occur in patients with monoclonal gammopathies and may contribute to infectious complications in such patients."


    Anyway, I would love to learn more about your symptomologies. Did you test positive for all the requisite tests to get coverage? Do you get sick easily? And what if I can't get the pneumo. test b/c I had a bad reaction to a previous vaccine???

    I can't wait to hear back from you!

    Thanks again for your help,
    cristine



    PS I am unable to work and have been unable to for over four years. I am 26 years old. I am so weak that sometimes it's hard to even sit upright at a desk...I really need help!! Thanks again for your help...
  9. shar6710

    shar6710 New Member

    I haven't heard of this as a treatment folowing the type of onset you had following a vaccine.

    However, I did attempt to have this done because there was a study in the UK following known cases of parvo. A certain percentage of these patients failed to recover and were Dx with CFS/ME (won't get into the discussion if they are the same disease or not) These people were later given IVIG and improved.

    As Parvo is believed to be the trigger for my CFS I was tested but because no Parvo viral DNA (PCR) could be found they would not treat me.

    According to the research I did IVIG is an approved treatment for CFS by the FDA. It can be dangerous as some people go into renal failure but this appears to be very rare and seems to be associated with a particular formulation of IVIG.

    Good luck and let us know what you decide and how you do on the treatment.

    Shar

  10. winsomme

    winsomme New Member

    there is a neurologist in CT that is having success treating patients with Chronic Lyme with IVIG.

    his name is Dr Amiram Katz and he practices in Orange CT. if you want contact info let me know.

    also he was written up in a Newsweek article which you might find if you Google.

    also there are some patients of his who post over on LymeNet.org.

    thanks
    bill
  11. winsomme

    winsomme New Member

    here is a link to the Newsweek article:

    http://www.canlyme.com/newsweek04.html

    thanks
    bill
  12. foxglove9922

    foxglove9922 New Member

    Christine,

    Gosh, I'm so very sorry to hear how terribly ill you are, my sincere best wishes that you are able to achieve a better quality of life.

    There have been many posts on this board about GG, you may want to do a search on the topic.

    From what I remember, nobody received any significant improvement from the GG.

    Foxglove
  13. wrthster

    wrthster New Member

    First Cristine, I really feel for you, I am 37 and have been dealing with this (not to this level) since senior year of college. So keep on fighting. IVIG subclass to answer another post is not always picked up in the total IGG count. My total count is completely normal. When they have done the test by subclasses it is always the same two, IGG I and IV that are below the range. Then the doctor has to test you with the vaccine that I mention in the post. If you print out the post, and show it to a good and compasionate Infectious Disease or Immunologist or Allery/Immunologist they will understand and hopefully test you. It does not help all people, but it is something I think worth looking into if you are getting a lot of infections.
  14. wrthster

    wrthster New Member

    Yes I suffer from way to many infections and have been on more antibiotics and fungals than I know what to do with. Yes, I did test positive to all the requisite tests to get BCBS to pay for this. They don't pay unless the doctor can build a good case. It is a pool of live blood plasma from many donors, and there is a shortage. It sound like your case is serious, and I would really encourage you to go to a good Infectious Disease or Immunologist for help. If you have been hospitalized that many times, I think you definately need to look into this further. Most family doctors do not check for this, you have to get to a specialist that understands. Take the post with you, and force them if need be to run the tests. Ask around your area, who administers IVIG in their office. It will either be an Infectious Disease, Immunoligist, Allergy Immunologist. If they don't have it in the office, they can have a home healhcare agency actually come to your house. Best of luck to you and post any more questions you have for me. I will keep you posted.

    Anyway, I would love to learn more about your symptomologies. Did you test positive for all the requisite tests to get coverage? Do you get sick easily? And what if I can't get the pneumo. test b/c I had a bad reaction to a previous vaccine???

    I can't wait to hear back from you!

    Thanks again for your help,
    cristine
  15. cristine04

    cristine04 New Member

    Hi there,

    I have an appointment with an immunologist in March. He is from the Jeffrey Modell Foundation so he is supposed to know about PID very well.

    I can't wait to hear about your IVIG.

    Definitely discuss any negative reactions you've had from vaccines in the past.

    My symptomologies are:
    severe fatigue
    muscle aches
    swollen lymph nodes
    low grade fevers
    major joint pain
    weight loss
    chronic infections (fungus, virus, bacteria)

    What are yours?

  16. cristine04

    cristine04 New Member

    bump...

    Wrster: please keep me posted on how you do with IVIG. Have you checked other support groups for it? There are some AWESOME tips on how to cope with IVIG..[This Message was Edited on 02/10/2007]
  17. IntuneJune

    IntuneJune New Member

    I have been worked up, subclasses show a deficiency.

    Frequently I get upper respiratory, sinus infections requiring multiple courses to overcome.

    The frequency slowed down a bit, so my doctor is following the frequency longer, he was seriously considering IVIG.

    The doctor defintely has to "build a case" for a patient to receive treatment.

    June
  18. IntuneJune

    IntuneJune New Member

    Good luck!!! Keep us informed.

    June
  19. busybusymom

    busybusymom New Member

    Hi There - I haven't heard of IVIG for helping people who get sick after vaccines. It is used for CFS and Lupus (I have both). It is also used for other very serious disorders. There was a time I could not get it because it was in short supply (it is made out of human blood). I get it monthly, and it is my LIFELINE! Check out my posts - I had several on IVIG. All I know is that there are very strict guidelines on who can get it. Check with your doctor.

    If I did not get IVIG, I would be in bed or on the couch all the time. It gives me the stamina to go for hours and independence.

    busybusymom
    [This Message was Edited on 02/14/2007]