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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.
Hi there.
I'm 2 months EOT so I can't really help you, as I'm just waiting for the poisons from TX to leave my system and I can then see what's left, if anything, in SX.
Suffice to say, have you gone to the Hepatitis C: Post Treatment Issues forum? That is much more specific to your inquiry.
Good luck.
I'm 2 months EOT so I can't really help you, as I'm just waiting for the poisons from TX to leave my system and I can then see what's left, if anything, in SX.
Suffice to say, have you gone to the Hepatitis C: Post Treatment Issues forum? That is much more specific to your inquiry.
Good luck.
It does take a long time to start feeling better. The only thing that helped me was exercise. I really had to push myself to start jogging but I feel 100x better now.
As with any "syndrome" one has to treat each individual issue. PIS is a very new "discovery" and just finding doctors to help one in trying get some relief can be difficult.
I have also been disabled from PIS for a great number of year but have found a group of docs that have helped me treat a number of my issues with meds to "cover" and have a better quality of life.
I don't believe there is a fix it all for the mess interferon has done to my system. I have accepted that. I won't accept that my quality of life has to be the worse and will fight the medical establishment especially since it was their poison and it should be their duty to help heal us!
btw,there is great interest in LDN (maybe you have read a few post about it here) which seems to reduce the inflammation interferon blasted away in our bodies! Unfortunately the regulations in obtaining LDN make it nearly impossible to experiment with...
I have also been disabled from PIS for a great number of year but have found a group of docs that have helped me treat a number of my issues with meds to "cover" and have a better quality of life.
I don't believe there is a fix it all for the mess interferon has done to my system. I have accepted that. I won't accept that my quality of life has to be the worse and will fight the medical establishment especially since it was their poison and it should be their duty to help heal us!
btw,there is great interest in LDN (maybe you have read a few post about it here) which seems to reduce the inflammation interferon blasted away in our bodies! Unfortunately the regulations in obtaining LDN make it nearly impossible to experiment with...
I am sorry to hear that you are still continuing to have sx. Have you done a cortisol test to check on the state of your adrenals and thyroid?
Mine was lowish so I will start to take some adrenal support ( Wilson adrenal support). I am looking to add Enzymatic Therapy, Metabolic Advantage, Thyroid Formula from iherb. Between other things it contains L-Tyrosine which is supposed to alleviate the effects of stress.
Mine was lowish so I will start to take some adrenal support ( Wilson adrenal support). I am looking to add Enzymatic Therapy, Metabolic Advantage, Thyroid Formula from iherb. Between other things it contains L-Tyrosine which is supposed to alleviate the effects of stress.
I have tried low dose LDN before I started tx (my purpose for taking it was to help with lymphoma) but I stopped after one week. I could not sleep almost at all and I was having weird dreams as well. So I just did not trust that it will work for me.
Don't know if there has ever been anything definitive written on post-interferon syndrome, but this makes for some interesting reading:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152870/.
I would get testing done on anything relating to metabolic 'syndrome' (cholesterol, insulin resistance, hypertension, etc.) and don't take, "Well, you're borderline / high end of normal as a brush off.
Anecdotally, I would invest in some good quality CoQ10 (Ubiquinol) and talk to your doc about a fancy Rx supplement, CerefolinNAC (now comes as a generic).
Good luck
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152870/.
I would get testing done on anything relating to metabolic 'syndrome' (cholesterol, insulin resistance, hypertension, etc.) and don't take, "Well, you're borderline / high end of normal as a brush off.
Anecdotally, I would invest in some good quality CoQ10 (Ubiquinol) and talk to your doc about a fancy Rx supplement, CerefolinNAC (now comes as a generic).
Good luck
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
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 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.
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.
"PIS is a great acronym for this terrible affliction"
_________________
I think your right about that one.
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I think your right about that one.
WoW, 3+ years! You really are an early adapter!
Mayo won't say anything unless you are a patient with them! My doctor (a nd his brother and father) studied there and contacted a couple of friends that are still there. They were very careful about what they are treating PIS with but at least they did confirm that they were using LDN but would not say anything else.
When I went thru the Mayo site I did notice that they did do phone consultations $$$ but if your insurance would cover a trip to one it would certainly be worth it... it was explained to me that one stays for about 3 days while you are seen by multiple specialist in various fields - a true holistic medical world.
I guess if you were going to call I would start with the Hep C/Liver Dept...
Mayo won't say anything unless you are a patient with them! My doctor (a nd his brother and father) studied there and contacted a couple of friends that are still there. They were very careful about what they are treating PIS with but at least they did confirm that they were using LDN but would not say anything else.
When I went thru the Mayo site I did notice that they did do phone consultations $$$ but if your insurance would cover a trip to one it would certainly be worth it... it was explained to me that one stays for about 3 days while you are seen by multiple specialist in various fields - a true holistic medical world.
I guess if you were going to call I would start with the Hep C/Liver Dept...
I think I will try and contact Mayo. What have I got to lose? Just money, but if you compare that to years lost, you get the idea. I had been doing well for a few years. This downturn is a shock to me. I am now seeing a Naturopath. She is giving me IV's with Phosphatidycholine and Glutahione. Not sure if it's doing anything yet.
I think the Hep C or Liver department is a good idea.
I think the Hep C or Liver department is a good idea.
so do I-first port of call,the folk who did this to us-they have the most knowledge of PIS. (they do know about it,don't be fobbed off).
Oh, can't wait for a report back.
Get some good questions written down. Make sure you record the call so you don't forget a thing... even ask that they record everything on the Mayo side and send you a copy - especially if you are going to pay for a phone consult.
Best of luck and this is really exciting!
Get some good questions written down. Make sure you record the call so you don't forget a thing... even ask that they record everything on the Mayo side and send you a copy - especially if you are going to pay for a phone consult.
Best of luck and this is really exciting!
LDN=low dose naltrexone-it's an opiate receptor antagonist used in the treatment of opoid addiction and also alcoholism but in low doses is being tried to dampen the immune system.
... great definition and I would add, from what I have read, also seems to reduce inflammation.
I emailed 49 doctors at Mayo in the Hepatology Department. I am also calling in, but you have to go through a main intake office so I don't know how far I can go.
I would encourage everyone else to also contact the doctors via email. Let's make some noise!
I would encourage everyone else to also contact the doctors via email. Let's make some noise!
I'm impressed :). It always amazes me how little doctors want to talk about the effects of Hepatitis C.......let alone treatment effects.
Best to you
Best to you
I am not sure what exactly we are suppose to email the Mayo doctors about?
The way I see it Mayo is a private research hospital that is helping HepC patients out! I don't know if they are the group that defined PIS but I know at least 2 members here that got a diagnosis here of PIS a number of years ago which started a movement within the HepC community.
If you want to make some noise with the folk who really know something and are NOT doing anything about it start with the pharmaceuticals! Ask them to send you their complete long term studies of treatment - COMPLETE! It is a dirty little secret that all research is edited. Can you imagine what was edited out of the HepC treatment!?!? Reading thru the lit was a horror and to think it was even worse!!!
I can go on and on but will leave with this. Many say that those with PIS is a very small %. We are just a very vocal group! Well I say BULL! I live in a small rural town. I have PIS. My mothers best friend, three houses from me has PIS! What are the odds? Treatment nearly killed her. She doesn't get online! She doesn't have a voice!
The way I see it Mayo is a private research hospital that is helping HepC patients out! I don't know if they are the group that defined PIS but I know at least 2 members here that got a diagnosis here of PIS a number of years ago which started a movement within the HepC community.
If you want to make some noise with the folk who really know something and are NOT doing anything about it start with the pharmaceuticals! Ask them to send you their complete long term studies of treatment - COMPLETE! It is a dirty little secret that all research is edited. Can you imagine what was edited out of the HepC treatment!?!? Reading thru the lit was a horror and to think it was even worse!!!
I can go on and on but will leave with this. Many say that those with PIS is a very small %. We are just a very vocal group! Well I say BULL! I live in a small rural town. I have PIS. My mothers best friend, three houses from me has PIS! What are the odds? Treatment nearly killed her. She doesn't get online! She doesn't have a voice!
I think we're a larger percentage than they let on too. It took me years to get it together to come on this forum and as I find computers so tiring I only duck in and out. We need to make sure our doctors have informed the pharmas of our predicament and write to the pharma company involved ourselves to report post tx issues but as most of us can't even get dressed...
re LDN,if you are taking opiate painkillers this drug is not a good idea as the opiates won't work!
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