Mayo Clinic Connect
What is known?
Liked by bt56, denisefinn
My name is Barbara… I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes… the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.
I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!
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hi barbara, these stories r just devastating as is my own. i am 8 yrs post tx n i am mostly housebound also. i have to rest every other hr in order to get thru a day. my immune system was fried n now have CVID with predominant B cell damage, sjogrens syndrome, as u also, i am a rn n have a master's degree but can not remember anything…i mean anything anymore. my bones hurt so bad i lie in bed n cry…especially before a storm. somedays think i would be better off gone…the depression is overwhelming some days!!
I am so sorry that u r going thru this also as i wouldn't wish this life upon anyone. pls keep in touch xo
Hello Barbara, I am 64 and am feeling that there really is never going to be any hope of bringing back the person we once were. I am too sick to work. Constantly looking for another supplement that doesn't do shit. We were the guinea pigs that fattened their wallet. They should have cut my dose, but if they are getting paid thousands of dollars for how much they prescribe, they aren't going to do that. Take care..Sue.
Believe me, there are thousands. There are other sites that have a lot more people on them. I will find out the name of the one I've been following and post it. I knew about the others way before i became aware of this one. There was a post i read on that site that brought me to this site. Indicating that the mayo clinic actually put a name on our suffering, but offered us no action in fighting back. It is as if we are dying from the inside out and that is supposed to be okay. I have so much anger i would be jailed if i said how i really feel about what the doctor did to me.
Can you post the name of the other sites. I believe you that there are a lot of us, but I would like to see for myself. I don’t know anyone who goes what we go through.
My depression is severe even with medication. It just gets worse. Sometimes I hear people say they don’t understand why anyone would kill themselves. I do.
My son broke his leg, so I've been very busy — no fun when I myself do not feel well, and this would not have happened if he had not been drunk. Here is one site:
I have a print out from 2011, no longer have a computer.
Thanks. The site is no longer there. FYI I broke my leg because I was drunk when I was a kid. I turned out ok.
Liked by beckyd
There aren’t many people posting here. Maybe they think only a few people suffer like this? Maybe they’re right? Maybe only a few of us do suffer like this. Maybe no one monitors the site?
About 10yrs ago, I read an abstract of a study done of a few thousand patients who had gone through long-term treatment with Interferon. In it, they reported that as many as 40% of these patients had a "syndrome" exactly like what we have. I was astounded! For many years, I thought I was the only one… or that it was either several conditions I had developed over time, or something entirely unrelated to my 2yrs of Ifn. I'll never forget how I felt after reading that article. Not only did I immediately feel that I was not alone, but I had an overwhelming feeling of, I guess, vindication. Now, after getting progressively worse over all these years, I just feel hopeless. But, I can absolutely attest to the fact that there are not only "thousands" of people like us… but more likely tens or even hundreds of thousands of people like us out there!
Liked by ldestella
Thanks. I read about depression and “my bouts with mental troubles”. These stories always, always, always end with “and then I got better”. Or “this to shall pass”. Well, that doesn’t do me any good. Like you, it gets worse everyday. For over 20 years. So now I know someone who’s ending is like mine. Not good. I hear, “at least you’re cured”. Fuck that. I got cured from a disease that had no symptoms and now I’m screwed. For a very long time. Every day is struggle. I’m worn out and there’s no end in sight.
Sorry about that. I have moved once a year lately, no longer have access to a computer, but i believe the site had the words hepatitis c in the title, can't remember. Thanks for letting me know that the doctor was talking about having a crooked leg.
Also, for any of you that have debilitating fatigue, i tried white kratom recently, it works.
It helps a lot for pain too. Take it on an empty stomach. I am very surprised, i have never had a plant based product work. It is not something u can use everyday because you build up a tolerance to it.
u r absolutely right!! my life is done n im only 57, 8 yrs post tx. i was a rn n have a mph n cant hardly get out of bed. i feel my life is over with no end in sight, im so sorry that u have to endure this also xo
HEY EVERYONE!! EVERYONE NEEDS TO TURN THESE DRUGS IN TO FDA ADVERSE EFFECT WEB SITE!! UNTIL WE TURN IN THE S/E THEY DON'T KNOW, I DID ABOUT A YR AGO N JUST WROTE THEM A LETTER YESTERDAY. THIS IS A MUST IF WE WANT TO GO AFTER THEM!!!!! XO
I went thru Interferon and ribovirin poisioning with a full year complement and have not been the same ever since! Mental and physical fatigue, high blood pressure, diabetes, anemia,skin rashes, poor sleep and on pain medication for years just to operate on a daily basis… after exploring the facts that I was never a drug addict, homosexual, or any other blood exposure I began to investigate my life… I discovered that while I was processed thru the military they injected me with a jet gun and was exposed to hundreds of other humans blood as it was spread… shortly after was hospitalized twice with serious fever, rash, and almost died… diagnosed in 1972 with ARDS and have never been the same since that experience… the Veterans Administration denies any culpability in this process but, if it was anymore obvious a blind person can see it… I have lost faith in the medical community as they have knowledge yet they are controlled not to discuss… I now know as I took a year to investigate this and, have proof positive the US Government spread Hep C thru out the population thru faulty practices and lie and conceal the truth… need help with getting medical care from the VA without a bill associated with what they caused???
Here I am sitting down as I had trouble standing for prolonged periods!!!
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