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Any Help for Post Treatment Syndrome
Hello,
Has anyone done anything that actually helps the post treatment symptoms, fatigue, lethargy, depression, etc? There are thousands of posts regarding this situation, but I haven't seen anyone talking about things that they have tried that worked.
I am also curious if there is any research out there about what actually happened to our bodies that caused these continuing conditions? Someone must have done some research, but I have never been able to find anything published. If nothing else, I'd just like to know what was damaged so I can understand the process.
My history: Treatment in 2001, 6 months, cleared the virus, been sick and disabled for the last 13 years. Sometimes better, sometimes worse. Stress wipes me out.
Has anyone done anything that actually helps the post treatment symptoms, fatigue, lethargy, depression, etc? There are thousands of posts regarding this situation, but I haven't seen anyone talking about things that they have tried that worked.
I am also curious if there is any research out there about what actually happened to our bodies that caused these continuing conditions? Someone must have done some research, but I have never been able to find anything published. If nothing else, I'd just like to know what was damaged so I can understand the process.
My history: Treatment in 2001, 6 months, cleared the virus, been sick and disabled for the last 13 years. Sometimes better, sometimes worse. Stress wipes me out.
Best Answer
it was my liver consultant that treated me who finally gave me the diagnosis after 5 years of back and forth.
"PIS is a great acronym for this terrible affliction"
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I think your right about that one.
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I think your right about that one.
I am taking 4.5 mg LDN every night. I've been taking it for 3+ years. I've always been on the same dose.
I also looked on the Mayo Clinic site and couldn't find anything in the search engine. Did you ever call them? If so, what department did you talk to? I just don't want to let this go and be content to be a couch potato for the rest of my life.
I don't see the benefit of a diagnosis if there is no help out there with the "Syndrome." PIS is a great acronym for this terrible affliction.
I also looked on the Mayo Clinic site and couldn't find anything in the search engine. Did you ever call them? If so, what department did you talk to? I just don't want to let this go and be content to be a couch potato for the rest of my life.
I don't see the benefit of a diagnosis if there is no help out there with the "Syndrome." PIS is a great acronym for this terrible affliction.
I was at first diagnosed with Post viral fatigue syndrome and fibromyalgia by my GP but then my liver consultant finally aknowledged that approx 4% of his patients were left permanently disabled with poor quaity of life after prolonged interferon treatment-Post Interferon Syndrome.
It was first brought to my attention by a member on this forum. She had just been diagnosed with PIS by the May Clinic.
That was 2, maybe 3 years ago. Oddly enough, when I went on the Mayo Clinic site, doing a search on the Mayo site brings up nothing on PIS. Maybe there is something up there now?!?! My GP did some of his training at Mayo when I asked him about LDN and PIS (I had read somewhere that they were doing research on both) my doc said he would contact some old friends at Mayo. The only thing his friends would confirm is that they are using LDN on PIS patients but no more - all that crap about discovering something and proprietary crap...
otterwatcher in England just posted that she was awarded full disability after being determined as having PIS. This is under the NIH in England and I think a very BIG deal!!!
lol, I see that otterwatcher just posted while I have been writing this...
In the end, it really doesn't matter if you use PIS but your doc should recognize the damage chemo does to your system. If we were cancer patients we would have after care up the yin yang. I treated for 72 weeks with this poison chemo and zero after care!
Currently most of my docs are pretty young and most def understand what interferon does to ones body... most have even heard of PIS and if they don't they care enough to read up on it. If they don't care enough about you then run fast and find a new, young doc.
best of luck
Oh, and if I can ask you, Dalesar, what dose of LDN are you currently on? What dose did you start with? Thanks.
That was 2, maybe 3 years ago. Oddly enough, when I went on the Mayo Clinic site, doing a search on the Mayo site brings up nothing on PIS. Maybe there is something up there now?!?! My GP did some of his training at Mayo when I asked him about LDN and PIS (I had read somewhere that they were doing research on both) my doc said he would contact some old friends at Mayo. The only thing his friends would confirm is that they are using LDN on PIS patients but no more - all that crap about discovering something and proprietary crap...
otterwatcher in England just posted that she was awarded full disability after being determined as having PIS. This is under the NIH in England and I think a very BIG deal!!!
lol, I see that otterwatcher just posted while I have been writing this...
In the end, it really doesn't matter if you use PIS but your doc should recognize the damage chemo does to your system. If we were cancer patients we would have after care up the yin yang. I treated for 72 weeks with this poison chemo and zero after care!
Currently most of my docs are pretty young and most def understand what interferon does to ones body... most have even heard of PIS and if they don't they care enough to read up on it. If they don't care enough about you then run fast and find a new, young doc.
best of luck
Oh, and if I can ask you, Dalesar, what dose of LDN are you currently on? What dose did you start with? Thanks.
I have been on LDN for over 1 year. A compound pharmacy makes it here in California. I can't say for sure if it make any difference. It's subtle, but I'm going to keep taking it.
Do you mind me asking what group of doctors actually recognize this PIS? I agree that my quality of life is significantly worse than before I took treatment, plus I'm getting older. I too was never warned of continuing adverse effects.
Anyway, we are still here and breathing.
Best
Do you mind me asking what group of doctors actually recognize this PIS? I agree that my quality of life is significantly worse than before I took treatment, plus I'm getting older. I too was never warned of continuing adverse effects.
Anyway, we are still here and breathing.
Best
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