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Post Treatment Problems
I underwent Peg-Intron Combo therapy for treatment of Hepatitis C in 2001. I cleared the virus, but have been mostly bedridden since then (7 years). I have been seen by many doctors and all the normal tests say that I am fine. But I can only do light tasks and must sleep a good part of every day. I am a 54 year old female.
No one seems to be able to discover what happened to me. I'm wondering about stem cell treatment might help? Do es anyone any suggestions? Are there any Medical Centers that are aware of, and are trying to treat patients with this problem?
Thanks
No one seems to be able to discover what happened to me. I'm wondering about stem cell treatment might help? Do es anyone any suggestions? Are there any Medical Centers that are aware of, and are trying to treat patients with this problem?
Thanks
I think everyone who fails to improve in energy levels following tx should get their
pituitary checked. Getting an IGF-1 as an indicator, if it below normal go to an endocrinologist. All your energy is controlled by this huge gland system, assuming your heart/liver/kidneys checked out...."the docs" saying nothing is wrong is impossible to believe if you still are prone, however very few docs do thourough gland checks on anybody as they tend to be expensive...so unless you start insisting...forget it.
In fact, go anyway to a good endocrinologist, treatment can cause one or several endocrine glands to shut down, not just the thyroid, but the parathyroid, adrenals, and pancreas can all be harmed. It's important to find what is causing exaustion.
Nost docs don't want to test the pituitary, but many HCV people have a damaged gland.so as a group they should be tested.
Another important factor is to try to start moving and get sunshine....even 10 minutes a day in the sunshine will give you enough Vitamin D, and a short walk will stimulate your body to make hrowth hormone while the light and vitamin D will aide with depression.
It's important to realize that any long illness makes one lethargic, and depressed, and that sometimes we have to force ourselves to get out and to move, because the more we lay there, the more muscles atrophy and the harder it gets.
I'm saying this to myself as much as to you, I'm in a similar boat....but I think part of the problem is when we are tired or sick for a very long time the mind and flesh just start giving up....and it's important we make some efforts for this to not become our permanent state.
hope we all feel better soon.....I'm going to plant a flwer every day this wekk...even if you can only do a little....do that....over time we can all be overcomers or at least know that we tried our best to win each battle....and that's an important thing to have done.
best wishes maryB
pituitary checked. Getting an IGF-1 as an indicator, if it below normal go to an endocrinologist. All your energy is controlled by this huge gland system, assuming your heart/liver/kidneys checked out...."the docs" saying nothing is wrong is impossible to believe if you still are prone, however very few docs do thourough gland checks on anybody as they tend to be expensive...so unless you start insisting...forget it.
In fact, go anyway to a good endocrinologist, treatment can cause one or several endocrine glands to shut down, not just the thyroid, but the parathyroid, adrenals, and pancreas can all be harmed. It's important to find what is causing exaustion.
Nost docs don't want to test the pituitary, but many HCV people have a damaged gland.so as a group they should be tested.
Another important factor is to try to start moving and get sunshine....even 10 minutes a day in the sunshine will give you enough Vitamin D, and a short walk will stimulate your body to make hrowth hormone while the light and vitamin D will aide with depression.
It's important to realize that any long illness makes one lethargic, and depressed, and that sometimes we have to force ourselves to get out and to move, because the more we lay there, the more muscles atrophy and the harder it gets.
I'm saying this to myself as much as to you, I'm in a similar boat....but I think part of the problem is when we are tired or sick for a very long time the mind and flesh just start giving up....and it's important we make some efforts for this to not become our permanent state.
hope we all feel better soon.....I'm going to plant a flwer every day this wekk...even if you can only do a little....do that....over time we can all be overcomers or at least know that we tried our best to win each battle....and that's an important thing to have done.
best wishes maryB
Hi dwert56
I am in the exact same boat as you. I just got a new liver Guru and just adding more mysteries to life. This is three years off treatment and "cured"!!!
Like you, my numbers are either on the boarder or normal. The latest discovery is that my vitamin levels will go up and down with time. Right now my iron was so low I went thru a colonoscopy as the Guru was sure he was gonna find internal bleeding = he didnt! He is just stumped and has prescribed iron supplements but I told him the next test will show normal iron levels. Same with A & D. A was super high one time then normal the next & D was low then normal...
The Guru also believes that I have a fatty liver (with NO proof) except for the crazy weight gain (60lbs) and gynocomastia. I fast, diet, exercise and still no weight loss. My whole life is now hell where before treatment I was living a perfect life. If only I could turn back time...
The worse thing is that all my GPs, liver nurse practitioners and any one in the medical field that will listen believes it is long term side effects from the hep c treatments then the Liver Gurus say No it cant be as the peddle it out more and more with no interest in really studying why patients such as us are suffering and suffering.
Mayo is very far from me but I just may have to look at a way getting there.
good luck in your fight and keep us posted if you discover anything,
frank
I am in the exact same boat as you. I just got a new liver Guru and just adding more mysteries to life. This is three years off treatment and "cured"!!!
Like you, my numbers are either on the boarder or normal. The latest discovery is that my vitamin levels will go up and down with time. Right now my iron was so low I went thru a colonoscopy as the Guru was sure he was gonna find internal bleeding = he didnt! He is just stumped and has prescribed iron supplements but I told him the next test will show normal iron levels. Same with A & D. A was super high one time then normal the next & D was low then normal...
The Guru also believes that I have a fatty liver (with NO proof) except for the crazy weight gain (60lbs) and gynocomastia. I fast, diet, exercise and still no weight loss. My whole life is now hell where before treatment I was living a perfect life. If only I could turn back time...
The worse thing is that all my GPs, liver nurse practitioners and any one in the medical field that will listen believes it is long term side effects from the hep c treatments then the Liver Gurus say No it cant be as the peddle it out more and more with no interest in really studying why patients such as us are suffering and suffering.
Mayo is very far from me but I just may have to look at a way getting there.
good luck in your fight and keep us posted if you discover anything,
frank
Not everyone feels horrible post tx. I did 96 wks of SOC svr now 20 mths and havent felt this good in 15 yrs. I felt horrible during tx and thought i would die or go crazy the 1st 2 to 3 mths post tx,but that all subsided. Fatigue, joint pain, swollen finger joints etc all diappeared post tx. I do have a few lingering sides : occasional headache, tinnitus, but all in all iam a new human being. I had more symptoms pre tx. than most, alot of which i attributed to the aging process. I was wrong!! Good Luck and dont worry so much....leah
That is really profound. I am in wk 47 of 48 and am very concerned about post tx sx that I read about.
So sorry that you are experiencing what seems to be a debilitating condition without a cure.
I hope in time you will feel better.
So sorry that you are experiencing what seems to be a debilitating condition without a cure.
I hope in time you will feel better.
I think I have been down pretty much all the roads that everyone else has, doctor, neurologist, hepatologist, gastro, and when all else fails: psychiatrist.
Then I moved over to the Alternative Docs. Have tried all kinds of vitamins and supplements, probably consumed literally pounds of them, do exercise every day, try to do as much as I can without crashing, when I do crash, try not to get depressed.....
But I am now finding there's loads of research out there about this problem. Many studies have found that as many as 30% of women having chemotherapy for breast cancer become walking zombies (like me). They believe there's central nervous system damage. The meds cross the blood/brain and actually change part of your brain. There's even a name: neurotoxicity
It is not the Hep C, I never had any symptoms, and have cleared the virus in 2001. It's the reaction to the meds. Anyone else?
Then I moved over to the Alternative Docs. Have tried all kinds of vitamins and supplements, probably consumed literally pounds of them, do exercise every day, try to do as much as I can without crashing, when I do crash, try not to get depressed.....
But I am now finding there's loads of research out there about this problem. Many studies have found that as many as 30% of women having chemotherapy for breast cancer become walking zombies (like me). They believe there's central nervous system damage. The meds cross the blood/brain and actually change part of your brain. There's even a name: neurotoxicity
It is not the Hep C, I never had any symptoms, and have cleared the virus in 2001. It's the reaction to the meds. Anyone else?
I have never recovered from the 48 weeks of treatment. I hope someone will help us that have lasting problems....I am 100 lb female and I think it was too much for my body. I hope you get better with time.
sadd
sadd
I just joined this group and posted for the first time. I am so sorry for what you are going through. I too feel exhausted,weak and extremely achy. When I can't get up I don't! I did go to a therapist and it has been helpful. Some antideppresants do help some people. I hope things get better for you.
Bre
Bre
Sounds like you have chronic fatigue, if you could push yourself to do a bit of exercise, walking would be a start, build up on it each week or month to get your strength back, I know it sounds hard, but its a start.
You could try ondansatron (zofran), or psychostimulants like modafanil for a while as they arent good to take long term.
As dranurag says, a physiotherapist and psychiatrist or counsellor would help you.
You may like to try taking vitamins/supplements, Fatigue Relief Plus are good in conjunction with the Bs, C, E, alpha lipoic acid, magnesium, zinc.
Read Gauf's profile for a good read on other supplements recommended by a well known hep c researcher that visits this forum.
You could try ondansatron (zofran), or psychostimulants like modafanil for a while as they arent good to take long term.
As dranurag says, a physiotherapist and psychiatrist or counsellor would help you.
You may like to try taking vitamins/supplements, Fatigue Relief Plus are good in conjunction with the Bs, C, E, alpha lipoic acid, magnesium, zinc.
Read Gauf's profile for a good read on other supplements recommended by a well known hep c researcher that visits this forum.
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