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
Same situation here, I am bedridden, tied to the bed, trying to make it through the day. Everything seems so senseless, I was a happy guy that everyone looked at when I entered a room...I loved to play music, to program, to cook....
That is all gone now.
I live a lonely life without friends without energy without words without love without future without hope ....
That is all gone now.
I live a lonely life without friends without energy without words without love without future without hope ....
I really have no clue as to what is wrong with me
I know I was one way before TX and another after and getting worse each year
Because all of this effects everyone differently the medical community since they can't test it and say yes or no ----- for the most part ignores it
There are tons of theories as to what is damaged
Vitamins / Drugs / Food / Therapies ---- all band aids, the damage is done and irreversible is what I have come to believe
I keep trying and researching (trying to break it down into what I understand)
Damage in the cells / damage in brain stem / damage in the brain ---- we were wired a certain way to work properly and the medicines screwed it up
and it doesn't appear anyone can unscrew it yet
Maybe years from now they will figure it out, hopefully the new treatments are not doing the same as the old ones
Its like the Hep C virus went unnoticed in our bodies till we took the TX and pointed it out ------- Now our bodies are in full killer mode with no success--- Like having the flu and having the coughing / sneezing go away but still feeling like you have the flu because when you did your body was trying to kill it
Being the way I am, I will continue every day best I can till it becomes too much to take
All we can do is try, understand, and maybe help someone else to understand
I know I was one way before TX and another after and getting worse each year
Because all of this effects everyone differently the medical community since they can't test it and say yes or no ----- for the most part ignores it
There are tons of theories as to what is damaged
Vitamins / Drugs / Food / Therapies ---- all band aids, the damage is done and irreversible is what I have come to believe
I keep trying and researching (trying to break it down into what I understand)
Damage in the cells / damage in brain stem / damage in the brain ---- we were wired a certain way to work properly and the medicines screwed it up
and it doesn't appear anyone can unscrew it yet
Maybe years from now they will figure it out, hopefully the new treatments are not doing the same as the old ones
Its like the Hep C virus went unnoticed in our bodies till we took the TX and pointed it out ------- Now our bodies are in full killer mode with no success--- Like having the flu and having the coughing / sneezing go away but still feeling like you have the flu because when you did your body was trying to kill it
Being the way I am, I will continue every day best I can till it becomes too much to take
All we can do is try, understand, and maybe help someone else to understand
That link you provided....I posted something about that trial years ago when it happened. These men's bodies swelled to about double their size, complete organ failures.
It was a chilling account, and one of the really chilling thing was that they did the trial to some extent in one location and at one time.
These men were dosed one after the other, and then started soon thereafter having horrendous reactions. Can you imagine watching it happen to one of the trial participants, and then waiting for it to happen to you?
I think that in retrospect they decided that it would have been much safer/smarter to dose the poor souls at intervals.
Somewhere on the internet there may yet be an account, but I can no longer provide you the account I originally linked.
http://www.newscientist.com/article/dn9734#.U8vC2UBz3XQ
============
Terrible story. I was just starting to look into trials at that time.
~W
Rick, I took a glance at this thread and my, I have to say you have come a long way from March - from doing meth to doing vitamins!
I treated with INF/riba as well but only lasted 12 weeks. I had a truck load of side-effects, however, and some of those are still around. My most severe reactions were dermatological, but I had the chronic fatigue and a destroyed immune system also. Three months after I quit tx I got a campylobacter GI infection (it hits the immunosuppressed - old people and infants) and my VL hit 7 million and was rising.
And of course I could barely walk around my house.
I did research as well and I found out that it was the riba that tears up your DNA and your mitochondria. HCV tears up your mitochondria on its own, but riba really tears it up. That's what chronic fatigue is all about - mitochondria, because that's where we make and store energy, and that is where we are impaired.
The list of stuff you are trying above is all great stuff. That's because they are classified mitochondrial nutrients. They are more properly termed metabolites, because they are part of your normal metabolism, or used to be anyway, before you damaged your mitochondria.
When One-A-Day vitamins makes an Energy claim for B vitamins and other mitochondrial nutrients, the FDA allows them to do that because it is the irrefutable truth that those nutrients have a positive effect on energy production. Five Hour energy uses mitochondrial nutrients plus a small shot of caffeine to boost energy. So the evidence is all around us, if you look.
For people who have been debilitated by these mitochondrial drugs for our mitochondrial disease, mitochondria nutrients make all the sense.
I would suggest that you keep educating yourself and buy into your new program. I have found that what helps is to take normal daily doses of the stuff, but split into three servings on a strict three servings per day serving schedule to maximize the tissue retention time.
And give it some time. Keep a journal for reference. Take BCAAs for brain fog, take N acetyl cysteine for glutathione production, which is one of the main deals for mitochondria, also phosphatidylcholine for your mitochondrial membranes. Plus all the mitochondrial nutrients. And have faith and be positive.
I know of a clinical trial involving these nutrient metabolites coming up in a couple months that is enrolling Veterans, through a new program called Operation Liver Health. Its out of Phoenix, but PM me if you want some details on it.
You might check out my Metabolomic Study post on the other Hep C site for more detailed info on nutritional supplementation.
Best of luck, man and thanks for your service, the VA system is messed up but some good things may come out of all this, at least you gotta hope,
Mike
I treated with INF/riba as well but only lasted 12 weeks. I had a truck load of side-effects, however, and some of those are still around. My most severe reactions were dermatological, but I had the chronic fatigue and a destroyed immune system also. Three months after I quit tx I got a campylobacter GI infection (it hits the immunosuppressed - old people and infants) and my VL hit 7 million and was rising.
And of course I could barely walk around my house.
I did research as well and I found out that it was the riba that tears up your DNA and your mitochondria. HCV tears up your mitochondria on its own, but riba really tears it up. That's what chronic fatigue is all about - mitochondria, because that's where we make and store energy, and that is where we are impaired.
The list of stuff you are trying above is all great stuff. That's because they are classified mitochondrial nutrients. They are more properly termed metabolites, because they are part of your normal metabolism, or used to be anyway, before you damaged your mitochondria.
When One-A-Day vitamins makes an Energy claim for B vitamins and other mitochondrial nutrients, the FDA allows them to do that because it is the irrefutable truth that those nutrients have a positive effect on energy production. Five Hour energy uses mitochondrial nutrients plus a small shot of caffeine to boost energy. So the evidence is all around us, if you look.
For people who have been debilitated by these mitochondrial drugs for our mitochondrial disease, mitochondria nutrients make all the sense.
I would suggest that you keep educating yourself and buy into your new program. I have found that what helps is to take normal daily doses of the stuff, but split into three servings on a strict three servings per day serving schedule to maximize the tissue retention time.
And give it some time. Keep a journal for reference. Take BCAAs for brain fog, take N acetyl cysteine for glutathione production, which is one of the main deals for mitochondria, also phosphatidylcholine for your mitochondrial membranes. Plus all the mitochondrial nutrients. And have faith and be positive.
I know of a clinical trial involving these nutrient metabolites coming up in a couple months that is enrolling Veterans, through a new program called Operation Liver Health. Its out of Phoenix, but PM me if you want some details on it.
You might check out my Metabolomic Study post on the other Hep C site for more detailed info on nutritional supplementation.
Best of luck, man and thanks for your service, the VA system is messed up but some good things may come out of all this, at least you gotta hope,
Mike
Yes Rick, very well explained.
As my symptoms added up I learned that interferon was a cytokine and then someone brought up this horror story from Britain the same year!
TGN1412 - http://en.wikipedia.org/wiki/TGN1412 & http://www.flutrackers.com/forum/showthread.php?t=9332.
take care all and best of luck, f
As my symptoms added up I learned that interferon was a cytokine and then someone brought up this horror story from Britain the same year!
TGN1412 - http://en.wikipedia.org/wiki/TGN1412 & http://www.flutrackers.com/forum/showthread.php?t=9332.
take care all and best of luck, f
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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!