Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Interferon Treatment

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Daffodil, Mar 20, 2014.

  1. Daffodil

    Daffodil Senior Member

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    Hi, All.

    So there is this woman who has been in the Yahoo group for quite a while, who says she has lived close to a normal life for 25 yrs despite the CFS/FM, by taking low dose alpha interferon.

    this is her story:

    http://www.angelfire.com/stars/cfsrecovery/conventional.html

    i read some older research papers saying that many of us produce lower interferon alpha and that many improved by taking it.

    i know this is very expensive (like over $5000 a month) and where i live, it would not be covered...but many of you can get it with insurance in the USA...so i am wondering if anyone has tried it. it seems strange that more people have not tried it.

    i was looking at the generics available in india and it is very cheap there.

    any thoughts on this?
    thanks
    xoxo
     
  2. Daffodil

    Daffodil Senior Member

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  3. beaker

    beaker CFS/ME 1986

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    I took it back in the 80's. Cheney and Bell did a very small informal study putting a handful of patients on it.
    I ended up in the hospital much much worse-- starting from a "severe" place. I developed IIT { Interferon Induced Thyroiditis } and IC{ Interstitial Cystitis-- a wretched illness all on it's own} Plus the extreme flare. I would of kept on it and injected the stuff into my eyeballs as I was feeling so desperate at the time and wanting so badly to get well. But they took me off. The side effects were vicious too. And yes, the dose was low. Dose was constantly adjusted lower to try and get rid of/lessen the SEs

    Eventually the IIT resolved. But I have been stuck w. IC.
    I was told one person did pretty good{Not sure what their starting point was} The rest either nada or worse.
    That was the end of that . At least back then it was.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interferon inducer can help with less issues to interferon itself. Ampligen is an interferon inducer as well as immunofer and cycloferon.
     
  5. beaker

    beaker CFS/ME 1986

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    I didn't do well on Ampligen either. But nothing as drastic . Was able to stay on it. But it didn't help. Only caused SE's.
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    @beaker What are SEs?

    GG
     
  7. minkeygirl

    minkeygirl Senior Member

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    I know someone who got interferon years ago through UCI. She did really well on it back then.
     
  8. barbc56

    barbc56 Senior Member

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  9. beaker

    beaker CFS/ME 1986

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    Side Effects. Sorry about the abbreviation.
     
    ggingues likes this.
  10. Daffodil

    Daffodil Senior Member

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    breaker....that's awful! sorry to hear about that...like you needed more problems. ugh. i also tried things when utterly desperate, including AZT, which I believe has left me with permanent cardiac damage.

    i asked my CFS specialist whether interferon itself would be a good treatment and he said, "no."
     
    Charles555nc and beaker like this.
  11. Charles555nc

    Charles555nc Senior Member

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    http://www.carolinacenter.com/

    this place im thinking of going to, talks about immunoglobulins...not exactly the same thing, but promises improvement on plateaus...
     
    Little Bluestem likes this.
  12. Daffodil

    Daffodil Senior Member

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    sounds like the same IVIG. looks promising. free too, if you can prove immune deficiency (you have to test the IgG subclass levels)
     
  13. sianrecovery

    sianrecovery Senior Member

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    I did a year on interferon alpha and ribavirin. It did work for my Hep C, and I believe improved my issues with immunity. That was back in 1998. The effect wore off, however. It also kicked my ass. There is a growing cohort of ex-interferon patients I meet who also seem to have experienced long-term issues with fatigue as a result of interferon.
     
    Sushi likes this.

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