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Interferon Treatment

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
 

beaker

ME/cfs 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.
 

beaker

ME/cfs 1986
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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.
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.
 

Daffodil

Senior Member
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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.
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."
 

sianrecovery

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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.
 

HTester

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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.
@sianrecovery Hi. I'm trying to tease apart the effects of interferon and the symptoms of ME/CFS. I know there is a lot of politics around this, especially in the UK, but I'd like to know if the only effect of interferon was increased fatigue or if other ME/CFS symptoms (PEM, cognitive issues, gut issues) were also exacerbated by interferon. Do I understand correctly that you already had ME/CFS when you were treated with interferon for HCV? Also, you mention a cohort of ex-interferon patients. Were those patients also ME/CFS patients when they were treated with interferon?
 

HTester

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@Dufresne Connections between the immune system and the kynurenine pathway are widely discussed in the literature. If the IDO metabolic trap exists, there must also be a causal chain of events that leads from the "trigger" event to springing the trap. Since many proposed ME/CFS triggers, especially viral infections, will up-regulate innate immunity, and since type I interferons are among the earliest host responses, I'm looking into the control of kynurenine pathway genes by interferons and other cytokines.

A physician at the 2019 Australia EMERGE meeting gave voice to the very reasonable idea that the cause of a chronic disease must be currently present in the body of the chronically ill patient. This could, of course, be true of ME/CFS, but it isn't the only possibility. The IDO metabolic trap is a bistability theory. It says that the cause of the disease was far in the past. The cause (or trigger) of the first crash pushed the patient beyond what the theoreticians call a "critical point." It's a trap in the sense that even though the trigger has been removed, the patient is still sick. What we measure in the blood or tissues will then consist only of effects. We will find causes of symptoms, and that will help, but what we really want is a cure. I can't point to another disease that works this way, so it often feels like I'm going far out on a thin limb. It's scientifically scary, but there are plenty of researchers looking for causes in their patient data, so it seems important to me and to some of my colleagues to follow this alternative hypothesis. Saying it might be a bistability disease doesn't, however, absolve me from the obligation to try to identify the causal trigger, and it's for that reason that I'm learning as much as I can about cytokines.
 

sianrecovery

Senior Member
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@sianrecovery Hi. I'm trying to tease apart the effects of interferon and the symptoms of ME/CFS. I know there is a lot of politics around this, especially in the UK, but I'd like to know if the only effect of interferon was increased fatigue or if other ME/CFS symptoms (PEM, cognitive issues, gut issues) were also exacerbated by interferon. Do I understand correctly that you already had ME/CFS when you were treated with interferon for HCV? Also, you mention a cohort of ex-interferon patients. Were those patients also ME/CFS patients when they were treated with interferon?
Hi Robert, I've also PMed you. Interferon restored my health to an extent, though it did leave a long-term legacy of fatigue. I am a person in long-term recovery, and many of my contemporaries with Hep C have also done interferon/ribavirin. They have experienced a wide variety of responses, including autoimmune issues.