Greetings, wishing all a return to health and happiness. My question and concerns pertain to the chronic problems I have encountered since my therapy. I did the year on Interferon and ribavirin, responded then came out of remission with a vengeance. The depression was unbearable, also the flu like symptoms. When I ended the therapy I had acquired fibromyalgia, hoshimoto's thyroiditis, increased viral count, GI problems, and a new personality!... and not a better one, I have never been able to come off anti-depressants since. Prior to treatment I was a pretty happy and cheerful woman, the weekend neighborhood kid collector, 30+ animals, hobbies, and a kind word for most everyone. Denial probably. The kids were happy and I was always, full of beanie weenies, so I use to say. A high level Neo Nurse with an even disposition. ACOA, in recovery with 2 children and a husband and stepfather to my kids. The disease really has taken a toll on my marriage. Post TX my viral count went from the 100,000's to the millions. I then went to a specialist in Charlotte, NC who decided I would respond with the new Peg Interferon and ribavirin. I wanted to get rid of the disease" bad", working with sick babies and having a deadly disease did not correlate as ok in my mind. I felt "dirty and dangerous", sooooo, I tried the new tx. Within 6 months I had to be hospitalized for severe depression and suicidal ideation. I did not have good support. I guess I had spoiled my family to the point that my codependent, overindulgent personality had left little room for compassion on their part. It is amazing the realizations you come to when you finally have to stop....and take a real look. The new treatment did not work out, I had not responded to the point where I had a chance for a cure, and crying all the time was not all that great. That was 10 years ago, now my viral count is 13,000,000 per cc. I have taken good care of myself so my liver has not deteriorated like it could have. My current biopsy is only a little worse than it was 10 years ago when I started, stage 2+++, and a little. Less fatty than when I started and only slightly more fibrosis. That would be great if I had any health left, but the truth is I am the walking dead. Severe fatigue, depression, fibromyalgia, joint discomfort, hoshimoto's, bradycardia, low blood pressure. Gluten intolerant (presently 2.5 years off gluten) and chronic lymphadenopathy. Lymph treatment is almost constant I get so congested, This has been a real roller coaster ride, my kids (grown now) want their mom back, I am afraid that person is gone. Sometimes I feel so depressed I see no point. I believe in life after death, I believe my soul is safe, and reincarnation, that were all little pieces of the big picture, and that we go on, I am just so tired. I am not so connected to this life that I believe I have to stick around until the bitter end; my beliefs are more like those of indigenous peoples who felt that when you became a burden to the tribe it's time for the long walk. But, here I am, the kids would want me to stick around, there are no holes in me and I look human so...I must be OK. Well, I am not. I hate being the walking dead. I do not wake up and say WOW, another day, now I wake up and say, well I am still here. My mind has never recovered, I guess I need some new dandy anti-depressants; the Prozac sure is not strong enough to overcome how I feel. Is there anyone else who feels like they have lost part of themselves from the treatment? I am on Provigal and that gives me some energy, but I have to pay later, usually complete fatigue for a few days. Pain pills relieve me to a point. A provigil and a pain pill and I am almost human. Oh, and somewhere along the line I have had some brain swelling. I know I am not cognitively even close to who I was. Neither my husband nor I am interested in being intimate since the diagnosis. I thank my higher power that I have not given hep C to anyone... that I know of. My marriage is now a friendship, kind of. It is all so weird, and not what I had in mind. I try to be spiritual about the whole thing but, I think I may be bipolar now, sometimes I feel like it is all in divine order and other times I take enjoyment planning my demise. My liver does not like food. So I eat very little. Healthy, but little. When my liver swells it hurt my ribs and back, I am uncomfortable often. The way I look at life has changed, things seem so unfair to me. Not for myself as much as I take such notice of things around me, but powerless to do anything. I see so much of the way life treats others, how out of balance the human race is, so thoughtless and greedy. I use to have a little farm, and I very much love animals, so I am affected by the treatment of our furry brothers terribly. I just don't get it. I am sure I have enough bad Karma for 10 people. But, why all the injustice. I am sick and tired of being sick and tired. Any advice. Laugh, Laugh, I know we are all suffering and here is a hug to all of you. Oh, one more question, has anyone heard of the Bob Beck's protocol or the rife machine? What supplements help you the most? Thanks for listening; I don't believe I have ever been quite this honest about how I really feel. Thank you. Dejavu
So much I'd like to discuss with you, but right now running late for work. Maybe later and in the meantime some others I'm sure will have insight to share. Just briefly, as far as supplements go, do some reading on CerefolinNAC (don't be thrown off by its FDA recognized uses - also has some interesting off-label apps) also CoQ 10.
Take care. There is help and hope.
So sorry to hear of your troubles. I hope venting helps....it always makes me feel better. It's less lonely when we hear back that others out there share our pain and our burdens.
Below is a list of supplements I took prior to tx. I'm not on any now, waiting until after 6 month post tx to decide what to resume.
SAM (S-adenosyl-L-methionine)-amino acid that can be used for depression 400mg 2xdaily
Fish oil or flaxseed oil-3 to 5 grams daily
NAC (N-acetly-cysteine) amino acid that helps produce of glutathione which is used by the liver to break down toxins-100 to2-- mgs 3xdaily
L-carnitine-amino acid may lead to less inflammation and scarring and may help reduce fatigue associated with interferon therapy. 1 gr 2xdaily
Resveratrol-antioxident- 50-100 mgs daily.
I found this informations in the Readers Digest Best Remedies book. I also drink brewed green tea. It is supposed to be an anti-inflammatory.
I took those supplements-along with Milk Thistle-prior to tx and honestly don't know whether they made a difference or not. My vl came down from 2million to 919,000-but I hear that bounces around anyway. I think it just made me feel better to be proactive and feel I was doing something to improve my health.
I am sorry to hear that you have had this happen, Maybe you could try asking for prayer.
I will put you on my list. Last week I asked all of my sources for prayer, and this weeks, all our needs got met! Don't give up,
I hope not to offend you, but my God is the only answer for me. Just keep asking Him, He will help you.
I have been going through a lot of the things (but not quite as severe) as what you are going through. I read somewhere that tx can effect Hormones/Testosterone. I just got back from having blood work done to see if mine are low. I figure, what do I have to lose?
I should have the results back Thursday. If you haven’t already it may be worth your while to have yours checked.
......"my kids (grown now) want their mom back"...........
You just made me cry, thru your whole post. For you, and for me (us all) in that so much of what you said, has been me since tx. I have been almost numb for 2 yrs now, compared to who I was. I've had two close deaths (in 24 hrs!) that took me down, and it is the first time I 'felt' deeply in a few yrs. I rescue animals, all my life, but do very little of that now. My home was the 'kool aid' house also, my kids, now grown, also said they 'miss me' (who I was). I told them, no one miss's me more then I miss myself, believe me. I am simply not the same person. I am blessed, VERY, in SVR, I am still a good person, still help others, still HATE abuse of animals or humans. Yet I just don't 'feel' as deeply as I used to. I never did AD's, I tried once, allergic to the 1st one I tried. I don't feel I am 'depressed'. I am just different. I also have body pain every day. Some days terrible. I don't know if it's fibromyagia as I have no insurance and have just covered my pap test, mammograms, etc. I go online and self diagnose a lot tho :)
Many of us have these issues post tx, some go away, for some of us not. There is no figuring it out tho. For you it's even harder as much of what you are suffering could also be Hep C symptoms. When I finally got dx'd it was due to severe fatigue and muscle pain, issues. It got to a point I could be in bed 2-3 days straight. I live a happy life, I was not depressed...then! The ironic part is, I am SVR yet still have all that?? I had no other health issues but Hep C, good weight, active, etc. My BP has always ran low, but is even lower now (not sure what thats about?). You have several things going on. You need one good Dr. to try and help you figure at least some of this out. It's awful that you have to deal with all this and did not reach SVR, hearing that (and others that don't) always snaps me out of whining. I am very blessed in my life, but still have to deal with my issues in it all.
Your post was very moving, thanks for sharing what I know is very personal, very hard to tell anyone else in your life, that has no idea what your going thru. Maybe share some of the info on med help with your husband, kids. So they know more about it all. Many of us did that here. I could write 10 pages to you :( but it is late and I am babbling. Just wanted to give some input here.
My best to you and finding some answers, getting some of 'you' back, LL
Oh! Just saw you live in Asheville! I was just there last week. I lived in Maggie Valley a couple yrs. We go up a lot. We'll be up there Dec. 26 thru Jan. 2. Asheville is a great town!
First, hugs to all. Thank you for your support. I know that there are those that that have far severe problems. I have reading this site for some time now. I finally joined, with a bang. My heart really aches for those who share having HCV and HIV, life is no picnic for me right now. But, I have a thousand hugs for those who are suffering. I have a lot of advice to read, and supplements to look up. TY Dejavu
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