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Post Interferon Syndrome

Infectious Diseases | Last Active: 4 hours ago | Replies (515)

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@degenerativeman1

I could be the poster child of long-term after treatment side effects of the stuff. My journey began in 1999. Diagnosed A1 at 36. I started with alpha 2b and ribiviren 1 yr. Didn't work. 6 mos later did 6 mos of pegalated and ribiviren. Stopped due to not being effective. 6 mos later started Pegasus and ribiviren for 1 yr. 0 viral count until 3 mos later came back with a vengeance. The best thing about all was the psycho issues with pegalated, the blood count iv treatment with Pegasus, and being sick all the time with it all. And, that's on top of a full time job. In November of 2004,1 month after my last therapy I weighed in at 129 lbs. Average was 165. I felt like I was going to die. And none of it worked! 2016 did Harvony 12 weeks,no side effects! It worked! Still 0 count! 2011, Diagnosed with degenerative s1 and l5 lumbar. Not tissue, but bone and tissue. It's traveling around my body like it's on tour. I lost my teeth, hair, and eyesight. I am not able to get a lower plate, like I could afford it, because of a degenerative mandible. I am on disability now and my wife's family thinks that I am faking it! I wish. I'm 59 now and I am losing my hands and feet due to degenerative issues, and I'm losing my eyes as well as my mind. And it's more and more difficult to receive pain medication because of federal guidelines. I explained this with several doctors and they just stair, slack jaw,like I'm making it all up. Yet,they are the ones that are making all the diagnosis. Now I am dealing with brain fog, high blood pressure, increased degenerative issues with my back and, increasing eyesight loss.
Not trying to cause a fuss ,but my quality of life is for naught. If any one finds a lawyer or lawsuit, please, please contact me. Thank you for letting me vent. No one else cares.

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Replies to "I could be the poster child of long-term after treatment side effects of the stuff. My..."

The vision loss combined with other stuff you mentioned is consistent with MS. I always thought it was inherited but it's not so I never looked at it but it's actually stimulated most often by viral infections. Some blood tests I'm requesting are to better monitor my b12 and vit d because decreased levels can be indicative, EBV antibodies to see if theres been a previous exposure of the virus correlated the most with MS and or to see if it's still in the system, Human Herpes 6 antibodies, and the gene HLA DRB1 *1501

Dunno if this helps at all but I think we all know no one else is gonna figure it out for us.

A MS diagnosis could help them better handle the acute issues as they come up.

Post interferon syndrome isn't a diagnosis on its own because there's no roadmap for it. It really just means you suffered viral and chemical exposure that opened the door to encephalitis which depending on if u had this other virus dormant in ya can be stimulated into relapse which would cause the same symptoms experienced thru all the other exposures.

I don't know how much sense I'm making.

Much love to you and I pray u find relief and real SUPPORT

I surely will there must be others that had suffered chronic side effects God's speed to You

Pls contact me at:Lcoffey38@yahoo.com

We r working on a proposal for a class action!

Lisa A DeStella

Hello-
Have a bone marrow biopsy done!!!! Mine showed that I STOPPED MAKING BONE!!!! Pls get this done asap to save ur extremities! I have 4 sets of steel now n more to come! Tell ur bone n mineral doctor (nephrology) that my COLLAGEN CROSSLINK WAS 0.005 (nonexistent) n i have the proof! Pls tell ur family that this is ABSOLUTELY REAL and pls email me asap at LCOFFEY38@YAHOO.COM as we r working on a class action!!!! Lisa