Ah I'm 26
Tx 2014 march, 12 wks ifn, sov, rbv
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 ....
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
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
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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
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
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!