Aa
9 years of fatigue and joint pain
I came to this forum in search of hope ---- I am only 56 years old but feel 80
I spent 20 years in military flying for the USAF ----- no drugs - drank, but my liver was in perfect condition
Got Hep C 85/90 from a Gamma Globulin shot (whole blood plasma) and went 12 years without it being detected and quit drinking day I was diagnosed
I can remember the day I took my first shot of Interferon and took the Ribo
I can also remember having more energy than I could burn off (If I didn't wear myself out I had trouble going to sleep and could put in 36 hour days flying with 8 hours sleep for weeks) I remember waking up and looking forward to getting my day started as soon as possible no matter what I had planed
I took my shot and slept for 3 days for the next 4 days I could barely do anything but go on and take it 1 day at a time. 6 months Interferon / Ribo ---- 10 months Peg-Intron / Ribo Nothing worked still had 1A Hep C.
It has been 9 years since I stopped the treatment and I am still feeling like I am on the treatment --- debilitating fatigue / headaches (move about) / joint pain / back pain (from injuries prior to TX but from lack of activity have gotten worse and require pain medication now) / brain fog lack of concentration
The VA and the rest of the doctors won't accept that this all came from me taking the Combo therapy when I know exactly that is when it all started (liver is still same as it was back then)
My question is one that I do not advocate anyone else to try, but I have become so desperate that I have resorted to trying things to help overcome the fatigue. I have known folks that have been recreational drug users forever and one of them came to see me since I barely have enough energy to go to the store let alone drive 6 hours to visit them.
They left me with some crystal meth and I held on to it for 3 months before deciding to try it. I did a very little bit about 10 AM because of all the things I want in life is to be able to wake up and have enough energy to look forward to doing something / anything. I did it that early and only a small amount because I wanted to be able to go to bed that night.
The strange thing was that I didn't feel high / euphoric ----- I felt "normal" for the first time in 9 years. I had breakfast and cleaned my house and ENJOYED it. I did go to sleep that night around 2330 but didn't sleep well. Which made the next day seem like it was a normal day of being back to exhausted.
This started me trying to find answers as to what happened to my body from the treatment and if there was a way to reverse it since the drug is a chemical reaction on the body and brain and not totally due to still having Hep C and getting older
I did find some things on the forum about about Post Interferon Syndrome and things others had done to combat it. I know that the drug I used can not be a solution nor do I want it to be.
Anyone know what it did to make me feel normal and how to repair that type of damage so I can wake up and not feel like I haven't slept for 3 days ? I do know what that feels like because I had done it before with drugs so I have a frame of reference as to how run down I am.
I am going to try some of the things others have tried and talk to VA about re-balancing amino acids and other things
Any insight would be greatly appreciated
I spent 20 years in military flying for the USAF ----- no drugs - drank, but my liver was in perfect condition
Got Hep C 85/90 from a Gamma Globulin shot (whole blood plasma) and went 12 years without it being detected and quit drinking day I was diagnosed
I can remember the day I took my first shot of Interferon and took the Ribo
I can also remember having more energy than I could burn off (If I didn't wear myself out I had trouble going to sleep and could put in 36 hour days flying with 8 hours sleep for weeks) I remember waking up and looking forward to getting my day started as soon as possible no matter what I had planed
I took my shot and slept for 3 days for the next 4 days I could barely do anything but go on and take it 1 day at a time. 6 months Interferon / Ribo ---- 10 months Peg-Intron / Ribo Nothing worked still had 1A Hep C.
It has been 9 years since I stopped the treatment and I am still feeling like I am on the treatment --- debilitating fatigue / headaches (move about) / joint pain / back pain (from injuries prior to TX but from lack of activity have gotten worse and require pain medication now) / brain fog lack of concentration
The VA and the rest of the doctors won't accept that this all came from me taking the Combo therapy when I know exactly that is when it all started (liver is still same as it was back then)
My question is one that I do not advocate anyone else to try, but I have become so desperate that I have resorted to trying things to help overcome the fatigue. I have known folks that have been recreational drug users forever and one of them came to see me since I barely have enough energy to go to the store let alone drive 6 hours to visit them.
They left me with some crystal meth and I held on to it for 3 months before deciding to try it. I did a very little bit about 10 AM because of all the things I want in life is to be able to wake up and have enough energy to look forward to doing something / anything. I did it that early and only a small amount because I wanted to be able to go to bed that night.
The strange thing was that I didn't feel high / euphoric ----- I felt "normal" for the first time in 9 years. I had breakfast and cleaned my house and ENJOYED it. I did go to sleep that night around 2330 but didn't sleep well. Which made the next day seem like it was a normal day of being back to exhausted.
This started me trying to find answers as to what happened to my body from the treatment and if there was a way to reverse it since the drug is a chemical reaction on the body and brain and not totally due to still having Hep C and getting older
I did find some things on the forum about about Post Interferon Syndrome and things others had done to combat it. I know that the drug I used can not be a solution nor do I want it to be.
Anyone know what it did to make me feel normal and how to repair that type of damage so I can wake up and not feel like I haven't slept for 3 days ? I do know what that feels like because I had done it before with drugs so I have a frame of reference as to how run down I am.
I am going to try some of the things others have tried and talk to VA about re-balancing amino acids and other things
Any insight would be greatly appreciated
Best Answer
http://www.academia.edu/280137/5-hydroxytryptophan_plus_SSRIs_for_interferon-induced_depression_Synergistic_mechanisms_for_normalizing_synaptic_serotonin
Ive just ordered some 5HTP after reading this-will let you know if it helps any. xxx
Ive just ordered some 5HTP after reading this-will let you know if it helps any. xxx
managing neuropsychiatric side effects of interferon
http://ccjm.org/content/71/Suppl_3/S27.full.pdf
http://ccjm.org/content/71/Suppl_3/S27.full.pdf
I totally understand.
My life is my the size of my sofa,
I dread going to bed-I have no problem getting to sleep but cannot stay asleep for more than 2 hours.For the first few years I couldn't stay awake for more than 2 hours,now it swings from one to the other but it can be months without sleep-like now.
Some days I think I'm gonna POP! I used to love life-now it's a chore-I wish there was some hope-maybe that's when the depression set in,when I realised this IS IT. At least we understand one another's predicament,
My life is my the size of my sofa,
I dread going to bed-I have no problem getting to sleep but cannot stay asleep for more than 2 hours.For the first few years I couldn't stay awake for more than 2 hours,now it swings from one to the other but it can be months without sleep-like now.
Some days I think I'm gonna POP! I used to love life-now it's a chore-I wish there was some hope-maybe that's when the depression set in,when I realised this IS IT. At least we understand one another's predicament,
Same as me
My life should be so great at this point without any reason to be depressed
But ---
When you wake up every morning feeling like you haven't slept (we won't even bring in the joint pains because if I felt like I slept I could ignore them) and realize that this is as good as the day is going to get is a MAJOR reason for depression
I have nothing I look forward to, getting thru the day is my daily struggle. I don't even contemplate tomorrow.
Being retired I can go to Charleston and grab a military flight anywhere in the world if I wanted to (This was supposed to be part of my life since I loved traveling) Now a 2 hour drive down there is awful. I had an opportunity to go to Cancun (My sisters business was paying for entire trip) I turned down the offer because I knew I wouldn't enjoy it like I would have if I were my old self. Sadly I have made my home my refuge and its a lonely existence and because I have lost hope on ever getting better or well enough to lead a semi normal life --- I am depressed
My life should be so great at this point without any reason to be depressed
But ---
When you wake up every morning feeling like you haven't slept (we won't even bring in the joint pains because if I felt like I slept I could ignore them) and realize that this is as good as the day is going to get is a MAJOR reason for depression
I have nothing I look forward to, getting thru the day is my daily struggle. I don't even contemplate tomorrow.
Being retired I can go to Charleston and grab a military flight anywhere in the world if I wanted to (This was supposed to be part of my life since I loved traveling) Now a 2 hour drive down there is awful. I had an opportunity to go to Cancun (My sisters business was paying for entire trip) I turned down the offer because I knew I wouldn't enjoy it like I would have if I were my old self. Sadly I have made my home my refuge and its a lonely existence and because I have lost hope on ever getting better or well enough to lead a semi normal life --- I am depressed
I've read that major depressive disorder occurs more often in patients with NO previous history.I think where I've arrived at is it's mitochondrial toxicity from both drugs that cause the fatigue and activated microglia that cause the dementia type issues but I now think depression is coming into the equation due to lack of serotonin and that's just amplifying everything.I wasn't depressed but after all this time with no life no interest from the medical profession and no way of planning for even tomorrow it's getting me down.
sounds like your doc said what my doc said-nothing we can do,luck of the draw...Post viral fatigue/M.E/CFS is a good place to start as they seem to share our symptoms,they seem to think it's autoimmune and interferon dysregulation related.
Hemp oil/seeds are good,I eat a lot of salmon (contains tryptophan) for an evening meal to help with sleep but still only averaging 2-3 hours.Regulating my body temperature is a major issue-same with ME/CFS patients-we have a lot in common.
Frank-yes I use a sonic toothbrush with soft bristles and get high flouride toothpaste on prescription-might be a good idea for you? My dentist was pleased with me last visit too!
sounds like your doc said what my doc said-nothing we can do,luck of the draw...Post viral fatigue/M.E/CFS is a good place to start as they seem to share our symptoms,they seem to think it's autoimmune and interferon dysregulation related.
Hemp oil/seeds are good,I eat a lot of salmon (contains tryptophan) for an evening meal to help with sleep but still only averaging 2-3 hours.Regulating my body temperature is a major issue-same with ME/CFS patients-we have a lot in common.
Frank-yes I use a sonic toothbrush with soft bristles and get high flouride toothpaste on prescription-might be a good idea for you? My dentist was pleased with me last visit too!
Taken together, the results indicate that mood status immediately prior to commencing PEG IFN/ribavirin therapy is more relevant than past mood disturbance for identifying at-risk patients. ---- Surprise ------ they are not blaming the patient at least
Frank
I bought a Phillips sonic care (150.00$) expensive but worth it and use soft bristles and have loved it for 5 years and dentist is always happy ----- Need to use the tooth rinse that promotes enamel growth too unless your water has fluoride in it
Not sure if I should start a new thread after talking to CFS doc ---- he has 35 years dealing with HIV / Hep C ( was involved in the mexican thing that is now a movie)
He basically told me that when we do the TX we spin a giant 28 wheel slot machine
Depending on what comes up depends on how bad your symptoms are. He mentioned cytokines and a lot of other stuff (I was so wore out from driving there it was hard to remember all)
If a lemon comes up that problem may or may not ever go away because something in your body was changed (what they don't know because it is a chemical / physical change in your brain)
He told me that he wants me to do TX again to get SVR but he told me that all my current problems weren't caused by the Hep C (it may lessen them ) but were from the TX
He told me the good news was that all my medical problems won't kill me
He told me the bad news was that all my medical problems won't kill me
He suggested I get Chia seeds for Omega 3
He suggested I read a book ( of which I have to decipher his physicians scrawl as to what the name is)
He suggested I walk 2 blocks a day ----- Drove back in truck and spent 3 hours in bed so not sure how that is going to work out
I was told I was one of the worst viral fatigue induced CFS patients he has ever seen because of the way it was an over night change from the Interferon
I did speak to him of the unorthodox treatment I tried and he basically told me that what it did was what my body isn't doing anymore ------ but to pinpoint what is causing that he needs more info and he was going to talk to colleagues he knows around the world and look at more of my history
Did an EKG ( surprise everything is fine)
And a bunch of odd blood work (according to the lady that drew it from me)
Last viral load I think was 93 million ---- have to go dig into huge record box and see if I can find old blood tests from prior to TX ---- and all my levels were in normal range (makes me want a Jack and Coke)
Stay well as you can everyone
Frank
I bought a Phillips sonic care (150.00$) expensive but worth it and use soft bristles and have loved it for 5 years and dentist is always happy ----- Need to use the tooth rinse that promotes enamel growth too unless your water has fluoride in it
Not sure if I should start a new thread after talking to CFS doc ---- he has 35 years dealing with HIV / Hep C ( was involved in the mexican thing that is now a movie)
He basically told me that when we do the TX we spin a giant 28 wheel slot machine
Depending on what comes up depends on how bad your symptoms are. He mentioned cytokines and a lot of other stuff (I was so wore out from driving there it was hard to remember all)
If a lemon comes up that problem may or may not ever go away because something in your body was changed (what they don't know because it is a chemical / physical change in your brain)
He told me that he wants me to do TX again to get SVR but he told me that all my current problems weren't caused by the Hep C (it may lessen them ) but were from the TX
He told me the good news was that all my medical problems won't kill me
He told me the bad news was that all my medical problems won't kill me
He suggested I get Chia seeds for Omega 3
He suggested I read a book ( of which I have to decipher his physicians scrawl as to what the name is)
He suggested I walk 2 blocks a day ----- Drove back in truck and spent 3 hours in bed so not sure how that is going to work out
I was told I was one of the worst viral fatigue induced CFS patients he has ever seen because of the way it was an over night change from the Interferon
I did speak to him of the unorthodox treatment I tried and he basically told me that what it did was what my body isn't doing anymore ------ but to pinpoint what is causing that he needs more info and he was going to talk to colleagues he knows around the world and look at more of my history
Did an EKG ( surprise everything is fine)
And a bunch of odd blood work (according to the lady that drew it from me)
Last viral load I think was 93 million ---- have to go dig into huge record box and see if I can find old blood tests from prior to TX ---- and all my levels were in normal range (makes me want a Jack and Coke)
Stay well as you can everyone
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I knew as soon as I didn't improve post treatment that the drugs had damaged me.It took 5 years to finally get a diagnosis of Post Interferon syndrome.I know exactly how you feel.However you do still have hep c and as the liver is the body's engine this may well be contributory to you feeling fatigued.Energy borrowed has to be paid back so you probably found that you had a few days completely whacked out post your experiments,it may well have been delayed so you didn't associate the two.If you have liver damage and hcv you really shouldn't make it work any harder than it already is so I'd leave out the chemicals-tempting as it may be to have a 'normal' day! I found cutting gluten/chemicals has helped and pacing myself very strictly can leave some spare energy now and then-it's life Jim but not as we knew it!