1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Immunoglobulin injections for ME. Could they have contaminated with XMRV?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Countrygirl, Apr 14, 2010.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    858
    Likes:
    702
    UK
    I, like many other with ME, were given immunoglobulin injections as an experimental treatment for our disease. I gather that they are manufactured from plasma and each injection or infusion contains the blood products of up to 10 000 donors. I checked their safety record and I read that they are used at the patient's own risk because it cannot be guaranteed that they are free from unknown infections.
    So, based on the above information, I have received the blood products of about 60 000 donors. I am a little uncomfortable about this new revelation. Can anyone assure us that blood products made from such a huge number of donors would be free from XMRV - :Sign Please:


    Sorry - I have missed out the word 'been' in the title. Can it be changed please? Thanks.
     
  2. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    5
    NorthEastern USA
    Countrygirl, I receive intravenous immunoglobuins (IVIGs) every three weeks, 30 grams, the infusions take 2-3 hours depending on the rate of the drip. Probably I have had 30 infusions, these are for primary immune deficiency (PIDD).

    Those with PIDD would be the most vunerable patients to have received contaminated blood since, by documentation, they do NOT have a functioning immune system and are treated with IVIG to boost their systems. This is an ongoing treatment. I have met a very, very healthy, active 30 something year old man who has been receiving IVIG since he was extremely young.

    June
     
  3. Countrygirl

    Countrygirl Senior Member

    Messages:
    858
    Likes:
    702
    UK
    Thanks Ladybugmandy and June for your comments. I've used google to unearth a little more information about the possible risk of viral contamination with gammaglobulin infusions/injections. According to the limited documentaion that I've been able to unearth, heb.C and life-threatening infections have been transmitted through the administration of this blood product. Also, I read that there is a risk of infection by as yet unidentified viruses. So, I'm not exactly reassured. Hopefully, it is very rare.
     
  4. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    5
    NorthEastern USA
    IVIG safety

    Countrygirl,

    I wish I could have been more reassuring however, given the recent "new" viruses etc, you would know why we cannot be reassured 100%

    Please find some comfort in that thousands and thousands of patients like myself rely on monthy (or in my case 3 week) infusions (not injections) of immunoglobuins. These patients live very active lives ..... not like the community here on PR. I had been diagnosed 30 years ago with fibromyalgia and "chronic fatigue," before having an immune deficiency (requiring IVIG).

    Please find some comfort in that the patients I have met receiving IVIG are leading very productive lives. They do have some similar complaints ..... but not to the extent we have, and they have been receiving these products for many, many years.....

    June
     
  5. Countrygirl

    Countrygirl Senior Member

    Messages:
    858
    Likes:
    702
    UK
    Thank you for your very kind reply, June. I'm not actually worried (after 30 years with this lurgy, I'm quite beyond that), but thought it was a point worth following up. I also wondered whether it could account for the possible high rate of XMRV in ME, as so many of us have received this treatment in the past.

    Thanks again.
     
  6. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    To IntuneJune or Countrygirl or others with an immune deficiency (PIDD or other) requiring infusions!!

    How was your immune deficiency diagnosed initially? Low IgG's during infections or some other way? How bad did it get before infusions were suggested for you?

    Thanks!
     
  7. IntuneJune

    IntuneJune Senior Member

    Messages:
    554
    Likes:
    5
    NorthEastern USA
    IVIG criteria

    Patients have a history of frequent infections, sinusitis, bronchitis, pneumonia with frequent use of antibiotics. The immune system is tested, IgG total, IgG, IgA, IgM, subgroups 1,2,3,4, and a vaccine challenge test. These must be well documented.

    June
     
  8. Countrygirl

    Countrygirl Senior Member

    Messages:
    858
    Likes:
    702
    UK
    Hello Francelle,

    I wasn't given any tests at all. Well, I do live in the UK! My G.P. decided to give me IgG just in case it helped. It didn't, but I only had about three injections, and I was severely ill.

    I sent a question about IgG to Dr Judy and her answer should appear on xmrvweb.me.uk today.
     
  9. Countrygirl

    Countrygirl Senior Member

    Messages:
    858
    Likes:
    702
    UK
    (I have just posted a reply and it has vanished into thin air, so my apologies if it suddenly reappears.)

    Francelle, I didn't have any tests at all. Well, I do live in the U.K., so what can you expect? My G.P. at the time thought it would be a good idea to try IgG 'just in case it helps'. It didn't, but I only had three injections and I was severely ill.

    I have sent a question to Dr Judy concerning IgG treatment and her reply should appear on the xmrv.me.uk site today.
     
  10. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    Thankyou Intune and Countrygirl!
     

See more popular forum discussions.

Share This Page