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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.
Okay then, there is a ongoing condition, PIS. I am now 4 months EOT. My question this morning is related to night sweats. It has become a nightly ritual for, to change out of my PJs because I wake up freezing ad soaking wet. I understood that was a sign that treatment was taking affect.
I drink plenty of water water and yet my hydration level comes back with #'s like -.17%.
Also my eye sight has really begun to wane, besides all the emotional issues that I can't resolve.
I am really getting tired of this body and would like to trade it for a new one.LOL
I am now moving into an SSI hearing stage, but if there is nothing I can prove wrong with me, what do I do?
I know I am a hard case, knuckle head, I just wish these sx would go away.
I drink plenty of water water and yet my hydration level comes back with #'s like -.17%.
Also my eye sight has really begun to wane, besides all the emotional issues that I can't resolve.
I am really getting tired of this body and would like to trade it for a new one.LOL
I am now moving into an SSI hearing stage, but if there is nothing I can prove wrong with me, what do I do?
I know I am a hard case, knuckle head, I just wish these sx would go away.
That is a really good point.
I just looked up my pain meds and none of them are opiate based. I have some rather odd pain issues sooooo am rather lucky that LDN should not be an issue.
I will ask my doc about LDN and opiates especially with me beginning LDN at around 1.5mg. at nite. I know the usual dose of naltrexone is 50mg!
thanks for that!
I just looked up my pain meds and none of them are opiate based. I have some rather odd pain issues sooooo am rather lucky that LDN should not be an issue.
I will ask my doc about LDN and opiates especially with me beginning LDN at around 1.5mg. at nite. I know the usual dose of naltrexone is 50mg!
thanks for that!
OK I think I understand where you are coming from Dalesar.
I don't think there ever was a study on PIS. The docs at Mayo don't fit into the Three Wise Monkeys "See Nothing Wrong with HepC Treatment, Hear Nothing the Patient Says, Say Nothing of Meaning to the Patient"!
I imagine that after a time, a group of patients came thru the many doors of Mayo with multiple issues after treating... The docs probably built a data base and discovered that they had a new group of patients all with similar issues. A Syndrome! The one link to all the issues the patients were having was INTERFERON thus Post-Interferon Syndrome (PIS). Just based on observation and not a study at all.
They may be doing research into what may help us - LDN and maybe other things *I hope* but it certainly doesn't take a genius to figure out something is messed up with a bunch of HepC patients Post-Interferon treatment.
Shoot, once I got rid of my simpleton docs and my new doc took over my case he realized something was very wrong. It helped that he began as a medical research scientist who discovered his boss scrubbing the numbers!
He was borrowing the offices with an elderly MD who had gone thru 2 liver transplants and his wife had just treated for HepC and was suffering like me. These two guys knew things had gone wrong and when I told my GP that the Mayo came out with a syndrome he said "But Frank, we already knew all that."
Point being that it isn't what you call it but how you treat it after you find a doc who doesn't call you a craze!
I don't think there ever was a study on PIS. The docs at Mayo don't fit into the Three Wise Monkeys "See Nothing Wrong with HepC Treatment, Hear Nothing the Patient Says, Say Nothing of Meaning to the Patient"!
I imagine that after a time, a group of patients came thru the many doors of Mayo with multiple issues after treating... The docs probably built a data base and discovered that they had a new group of patients all with similar issues. A Syndrome! The one link to all the issues the patients were having was INTERFERON thus Post-Interferon Syndrome (PIS). Just based on observation and not a study at all.
They may be doing research into what may help us - LDN and maybe other things *I hope* but it certainly doesn't take a genius to figure out something is messed up with a bunch of HepC patients Post-Interferon treatment.
Shoot, once I got rid of my simpleton docs and my new doc took over my case he realized something was very wrong. It helped that he began as a medical research scientist who discovered his boss scrubbing the numbers!
He was borrowing the offices with an elderly MD who had gone thru 2 liver transplants and his wife had just treated for HepC and was suffering like me. These two guys knew things had gone wrong and when I told my GP that the Mayo came out with a syndrome he said "But Frank, we already knew all that."
Point being that it isn't what you call it but how you treat it after you find a doc who doesn't call you a craze!
I am trying to track down the study that Mayo clinic supposedly did on PIS. I talked to the librarian at Mayo, he could not find any reference to the study.
I did report to the drug company and the FDA several times. I hope it goes somewhere, but I don't have a clue.
Several of the Mayo doc responded that this wasn't their field, more were out of town. Maybe someone will have an idea.
I also talked to the intake person at Mayo. She insisted on registering me before I could get shipped to a department. After registration, she sent me to liver, hepatology. Not much help, just a clerk looking to schedule me for an appointment with no information. Show up and see what happens. It's pretty hard to get past the white wall to an actual doctor or researcher who has any information.
Anyone else got any ideas?
I did report to the drug company and the FDA several times. I hope it goes somewhere, but I don't have a clue.
Several of the Mayo doc responded that this wasn't their field, more were out of town. Maybe someone will have an idea.
I also talked to the intake person at Mayo. She insisted on registering me before I could get shipped to a department. After registration, she sent me to liver, hepatology. Not much help, just a clerk looking to schedule me for an appointment with no information. Show up and see what happens. It's pretty hard to get past the white wall to an actual doctor or researcher who has any information.
Anyone else got any ideas?
naltrexone and problems with pain relief http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1336752/
I always worried about what pain relief would be available as an opiate alternative if I was injured and taking LDN or any opiate antagonist.Apparently it would be only paracetomol or ibuprofen-not terribly effective...
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