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253566 tn?1219683299

Two years off treatment and still suffering!

My therapist suggested I start looking for answers on the internet again...

I have been cured and off all meds for two years but still suffering and do not know where to turn.

I have been diagnosed with Chronic Fatigue, Systemic Yeast Infection, crazy weight gain (50 lbs), gurd, muscle weakness and the list goes on and on!

At my last liver docs appt they "apologized for destroying my life" and said that maybe I would recover in 6 or 7 years. They gave no suggestions for a speedier recovery saying my system was in chaos. This was at the University of Pittsburgh, UPMC.

Cleveland Clinic is somewhat nearby but whenever I tell my story no one seems to believe me or have any answers. It gets more exhausting and depressing with any new visit.

I am sorry to leave out details but there are just sooo many blood-tests that are a bit off I would not know where to start. If I can add any to this please ask.

frank

At my SSI re-hearing the work expert concluded that there were NO jobs for me due to medical poisoning and the need to sleep every 4 or 5 hours.
117 Responses
Avatar universal
I'm so sorry you're suffering.  Have you been thoroughly checked out for anything else other than extended sides from tx?  There are so many other diseases one can get, unfortunately.  Also, I am a strong believer in exercise.  Got that from my dad, who after 2 heart attacks couldn't even walk a block.  So he deliberately started walking for exercise, adding small increments (even if just a step or two more than the day before) every time he went out.  After a few months he was walking for a mile, then slowly he got up to two miles, then he started running for a few steps in between walking steps, then more running.  It took him two years, but he eventually was running marathons. I'm not suggesting that you will run for 26 miles, or that anybody ought to, but exercise will definitely give you more energy; it doesn't deplete your vigor.  Hope you feel better soon.
253566 tn?1219683299
Thanks for your kind words. Yeah, that is the thing. I have been checked for everything they can think of.

And you would not believe how I exercise. I have never had a drivers license and took up single gear bicycling in San Francisco. I also ran the hills of SF... During treatment I had cramps sooo bad but would do an hour or two of cycling or fast walking but I gained weight and lost energy. Everyone is really puzzled - like my metabolism has completely stopped. I am currently on a diet of about 1200 cal. and taking plenty of vitamins and supplements.

Right now my energy is horribly low but I still manage to cycle to my doc appts which are about four days a week.

frank
186606 tn?1263513790
B12 injections are magic during treatment but perhaps could help you as well?
Avatar universal
Thyroid?
253566 tn?1219683299
Did a B12 injection therapy for about a month, maybe three days a week and it had no effect. I also tried sublingual B12 - nothing. My clinic had a Korean acupuncturist so tried that 3 days a week for about 2 months. Felt a bit of energy for a couple weeks then back to fatigue. My korean doc said that they poisoned me too much and he could not help me!

I was on treatment for 15 months due to a lab error. After great success one report showed my counts going back up so they decided I would end but did another reading a month later and back to low counts so they said I had to start over from that point thus 15 straight months!

And yes, everyone first thinks it is my thyroid but all results are either normal or just a little low or just a little high. One specialist I went to is somewhat infamous for prescribing thyroid meds for everything. He is 74. He looked at my blood records (as big as the NY City phone book) and said in his 40 years of practice had never seen such chaotic blood reports! He did not prescribe thyroid meds as my numbers always changed.

frank
Avatar universal
Sorry about all your problems. Indeed, interferon can muck with the metabolism, and perhaps that explains many of your symptons. I assume you've had your testosterone checked? Mine was normal both before and during treatment, but dropped and remained low normal for over a year post treatment. My symptons aren't as bad as yours, so haven't supplemented the testosterone, but you might consider at least trying it, even if you're in the low or perhaps even mid-normal range. You also mention your lab results are out of whack. What tests specifically aren't right?

A few other thoughts:

(1) Diet -- 1200 calories is pretty low and sometimes you need to eat more in order to burn off fat. You might try experimenting more with your diet, perhaps under the guidance of a nutritionist. First step would probably be to get you up to around 2000 -- 2500 calories a day with a balance of fats, protein and carbs. Possibly even protein heavy like the "Zone" diet. The idea being to get your metabolism jump started. Right now, your body may be reading the low caloric diet as "famine" and shutting down.

(2) Exercise
Don't know how much you're doing, but too much exercise can run down the immune system, esp one that has been compromised. Maybe a little time off, combined with the diet, and then re-introduce starting at 20 minutes a day and then working up to 40 minutes or aerobic work, but no more.

(3) Meds and Supplements
Sometimes it's what we do to help ourselves that end up hurting us. Take a good look at your meds and supplements and see if anything could be causing some of your problems. It could be as simple as being allergic to something in a supplement as some are allergic to milk thistle and I know when I tried St. John's Wort it made me very fatigued. With your doctor's permission, you might want to stop all meds and supplements and see if that makes any difference. Then gradually introduce things one by one.

(4) Take a vacation. Sometimes we just need to get away from all this stuff and let nature work by herself

(5) Mayo Clinic. If your circumstances or insurance allows, they have a 2-4 day workout program where you check in and they go over you head to toe. Sometimes a new medical team is what's needed.

All the best,

-- Jim
Avatar universal
I understand how you feel.  I am nearing four years of SVR, and continue to have strange and often debilitating problems.  I did two courses of tx, one for 15 months, at high daily doses, and the last one for 18 months, with double the standard doses of Peg-Intron, full Ribavirin, and Procrit.  I felt absolutely great, cured even, for about a month after my tx ended....then everything hit the fan!  I developed joint and muscle pain, periods of extreme fatigue, skin reactions, sun sensitivity, my blood pressure became above normal for the first time in my life, I have developed metabolic syndrome, high blood sugar (as in pre-diabetes), erectile dysfunction, recurring welt-like mouth and cheek sores, lots of gum loss, and bone thinning!  I struggle with energy and motivation issues, and I often feel like my lungs burn when I workout or do aerobic exercise.  I frequently feel pain in my ribs, sort of a costochondritis type syndrome, and it flares up when my face gets the lupus-like red patches on the cheekbones.  The tiredness and constant need to yawn is really annoying.

Its very frustrating to be SVR, and to have worked so hard to get free of the virus, only to be dealing with a system that is going beserk, and a body that feels like it has been hammered into submission.  Oh yes, did I mention that my eyes are dry and often irritated (as in Sjogrens Syndorme), and I have more dental problems than ever.  Root Canals, and phantom inflammatory jaw pain, etc.  My neck and shoulders feel like they are riddled with fibrosis.  I have a really hard time sleeping comfortably in any position, and get shoulder, neck and arm pain every night.  No real problems with this during tx!  I slept soundly and without pain during tx.  

I continue to try to push through all of this, but sometimes feel like there is no end in sight.  The doctors have just about NO CLUE what to do, but many have told me that interferon can really cause bad long term problems, and change your system drastically.  Of course the HCV doctors were not the ones to tell me this.  The Interferon problems should be over in a few months, according to them!  Right.  I wish you luck, but I do not think there are many answers yet for us.  Unfortunately the medical community is either in denial over the post-tx problems, or they just don't feel like dealing with it.

DoubleDose
Avatar universal
I just want to say that I never fully appreciated  the extent of your post TX problems. I feel badly for you and hope that you get some relief soon. Mike
Avatar universal
My post treatment problems are no way as bad as yours, but some similarities - esp with the metabolic syndrome, blood pressure and motivational issues. I know you've mentioned a possible connection between these symptons and 'persistent' virus, but if I were to place a bet, I'd put it squarely on the interferon. I don't think it's so much that the interferon brings these conditions out of nowhere, but it seems to magnify whatever was going on, and bring out of the woodwork anything just under the radar. This may be one reason why some people don't seem to have any post tx symptons and some do. In my case, I was genetically predisposed to both metabolic syndrome  and high bp, but the interferon definitely magnified the problems. If my genes were different, perhaps the interferon wouldn't have done as much damage.

-- Jim
Avatar universal
I find myself asking is the cure worse than the virus.  

                                                                                                                          Ron
Avatar universal
And as frustrating all this stuff is W/SVR, think of how it would feel if you were going all of that and did NOT get SVR.   Trust me, it is much more of a bothersome thing when you realize that in addition to post treatment health issues, you all have the Hep C...still and have to deal with that, too.  I am not trying to minimize your problems, far from it, they are real concerns.  But, there's also the blessing that you have of been cleared of the HCV.   I'm still trying to get there.....   and I'm still having the post treatment(s) issues as well.

Susan
Avatar universal
I am soooo soooo sorry that some have to deal with such aweful post side effects.  Maybe more needs to be done as to look into the plp that have them.  It really does not matter that there are far less plp who have the lingering post side, it is the concern for the quality of life.  I sure hope more will be studied in the near future.

And, the there are those like susan400 that have both post sides and still has HCV.  I am sorry that you are still struggling.  

One day, Maybe one day, things will get easier for this disease.

Cajun
Avatar universal
Frank,,,It is terrible to be cured of hep only to be left with lots of unknown medical issues and my heart does go out to you.  We spend so much time in drs offices before,,,during and after tx that you just don't want to be living your life in drs office but,,,,,in your condition,,,I would be having every test run I could so I could get some answers and some relief!  

DD,,,I also didn't know how bad you had post sides and I can see why you are constantly looking for answers.  It has to be frustrating!!   Are you currently working and if so does any of this interfere with your work?
Avatar universal
Thanks for the inquiries and kind comments.  In spite of the wide array of symptoms, I still try to live a pretty normal and active life, with lots of travel and some exercise and a little golf, tennis, etc.  I run a consulting business and push myself hard to keep up with the demands, as well as family, kids (mostly grown and graduated from college and grad school, and another still on the way toward college), and some community activities.

Yes the post-tx problems do interfere, but I am good at keeping them 'invisible' to the outside world.  I have to push very hard to shake the fatigue, and work through it much of the time.  I really feel it in the evening, and have a hard time keeping from falling asleep frequently once dinner is finished.  Waking up and getting going is also a real 'bear', and I feel groggy and dazed on waking, beyond what I have ever felt before....even with eight hours sleep.  For me the answer is probably to keep the healthy eating and exercise regime at a high level, and then to follow up on medical issues and try to address each one individually with the right doctors.  BP is manageable, and probably some of the metabolic syndrome markers may be amenable to continued diet and medication, etc.  I am not sure what will really mitigate the fatigue, the periods of weakness and almost trance-like feelings when sitting for awhile, etc.  Motivation is really tougher after tx, and though I do feel healthier in some ways, I also feel less strong physically, less excited about everything, and more prone to bodily aches and pains.  

Most people who know me have NO idea anything is amiss, and have never had a clue even during my tx'es.  Its hard to explain how crummy you can feel, while appearing so normal.  Maybe over the years some of this will fade away, but I am not extremely optomistic that everything will feel a lot better.  We will see.  Best wishes to all of you!

DoubleDose
Avatar universal
SORRY,

i am 1 year post tx and still have fatigue, skin problems and slight depression.

i always try to voice my concerns over txing when it is not urgent. if i did not svr, even at stage 3, i would never tx again with present drugs when better and shorter tx is so close to approval. it has ruined my life. do not know what else to say.
bobby

150807 tn?1194958915
Ok i didnt know "interferon can muck with the metabolism" does this happen with everyone?
Avatar universal
You have said it all.  For some reason anti TX opinions on this board get shouted down.  There are as many Neg as Pos for Tx.
                                                                                                                       Ron
Avatar universal
This sounds so elementary that I am reluctant to ask... but I will anyway. How is your hemoglobin? Mike
Avatar universal
Hemoglobin was at about 14.5 at last labwork about six months ago.  Seems right in the middle of the range.  Everything else lab-wise is in-range except for metabolic syndrome markers..triglycerides, cholestorol, BP, etc.  Even did a Testosterone test, and as I guessed, middle of the range.  Whatever the  Interferon is doing or has done, seems to leave the labs looking somewhat unremarkable.  For the amount of ill feeling and number of odd symptoms you would think something more definitive would appear on the labwork.  Although my ANA remains elevated, and goes hand in hand with the 'interferon autoimmune syndrome' that my rheumatologist described to me a couple of years ago, after I had a battery of tests.  He said, well at least its not exactly Lupus!
Gee Whiz, I only get to have pseudo-Lupus!  Can't even have a full disease to complain about.

How are you doing lately Mike.  I hope all is going well, and you are continuing to feel better after your SVR, and your meds related incident.

DoubleDose
253566 tn?1219683299
Wow, I am so happy to find this forum. I thought I was the only one (of course, LOL)...

Where to begin? My greatest depression over this issue is that I was sooo extremely healthy. We figured that I was living with this Hep C for about 20 years but my count was very low, my liver was healthy, I had no symptoms and my geno type didnt have much success with the treatment. I thought the doc would say "OK, looks like youre staying healthy and living with HepC so come back in a year and we will see how youre doing" BUT NO. He said that they had seen patients get much worse in their 23rd year, even die!

So, Yeah, It was the worse decision in my life to go for the treatment. And all my docs say but youre CURED of Hep C.

I went back to the Liver center in Pgh last year and told them I was still suffering and wanted to end it all. My docs nurse practitioner had just returned from an international convention on HepC. After telling her what I was going thru the first words out of her mouth were "I apologize for destroying your life". So I am sitting there thinking "youre not suppose to say things like that"! She also said that we seemed to have sped up your genetic problems and what would have happened in your 70s is happening now (I am 45 now). This is exactly what jmjm530 is refering to! Can you imagine my depression after hearing all this? My psychiatrist is amazed at my coping skills!

She also mentioned about changing the cellular make up and then said something about genetic changes too but wasnt too clear on that. She ended by saying I would probably shake it all off in 6 or 7 years. I am still trying to figure where she got these numbers.

In my next appt I asked the main doc to confirm what she said and he confirmed it all! I even got that on tape.

I am being pushed to go to the Cleveland Clinic by many around here and wonder if they have such a program as jmjm530's mention of the Mayo Clinic.

thanks everyone for all their support, you have no idea what it means to me,
frank
Avatar universal
I feel a little guilty after all I have been reading because I have been feeling pretty well. My only issue is that my hemoglobin is below normal and had been dropping slowing but consistently for at least 6 weeks and I couldn't figure it out except that my surgeon once said he was afraid that I would have residual anemia because of all the treatment I did. Part of my drug regimen since transplant has been magnesium oxide and 2 weeks ago I realized I had forgotten to refill it and had been off it for 2 months or longer. I started taking it immediately and my Hb went from 11.9 to 12.5 in 2 weeks. I get labs every 2 weeks which allows me to see everything so I know it's been dropping albeit at a low rate since 6/26 - still SVR per draw on Wednesday, by the way. Anyway, I haven't been as energetic as I would like but with borderline anemia I shouldn't expect to be. Do you have a clue what mag-ox has to do with Hb? I sure don't but something improved my Hb and RBC and that's the only change I have made.  So things are good and thanks for asking. I wish you well my friend, Mike
Avatar universal
Sorry Frank to hear what you are going through.I hope you find a doctor that can help. I was feeling fine for about a month post tx and now not as good. I found this old post in the Neurology Forum. This fellow was tx for hep C and here is what he has to say and the advice the doctor gives him (he is SVR BTW)

http://www.medhelp.org/forums/neuro/archive/8896.html

"Over the last year I have had some minimal numbness and tingling in the very tips of my fingers and toes and occasional fleeting stabbing pains in random places of my body. I have chronic HCV so I also have a lot of joint and muscle aches and pains. Over the last couple of weeks, I have started having frequent sharp stabbing pains in my hands and feet and in the last week an increase in the numbness. Now I have some numbness extending down my fingers and in my toes. A couple of nights I have been awakened with pain in my feet and several nights I have had to sleep with my feet off the bed and uncovered because of burning. As far as the HCV is concerned, I have been in a sustained remission, but I am having some symptoms of relapse. Could this problem I am having with my hands and feet be secondary to the HCV. I am really limited on what I can use for the pain since Tylenol and Ibuprofen both are supposed to be harmful to the liver. Any advice would be much appreciated. Thank you.
Dear CJ:
Hepatitis C certainly can cause parasthesias, peripheral neuropathy. It might be best to see a neurologist and confirm the diagnosis of peripheral neuropathy. There are many good neurologists in the Cleveland area, in particular at the Cleveland Clinic. You could arrange an appointment at the Cleveland Clinic by calling 1-800-CCF-CARE. There are medications on the market such as Neurontin that are not metabolized by the liver that might help you find relief from your pain. When you see a neurologist, he or she will be able to tailor a medication just for you.
CCF Neuro[P] MD, RPS




253566 tn?1219683299
I cant believe how many of the same symptoms you and I have. You have a much better grasp on the list than me! I was on the same meds: Peg-Intron, full Ribavirin, and Procrit. You mention so many problems like gum loss, and bone thinning which reminds me that my dentist was shocked how his root canal fell apart. He expected it to last 8 years or more but it was gone after a year!

Then four months ago I woke up with horrific shoulder pain. My GP says try aleve without even getting up to check me out. A month later I had lost so much range of motion even my GP was shocked. Ordered an MRI and I had tendinosis as well as some arthritis and a spur. They also noted enlarged lymph-nodes. So they have no idea why I have tendinosis because no accidents or surgeries. A month of physical therapy goes well and I gain some movement. I also get a TENS unit to help with the pain but at nite cant find a position to sleep! My second eval after another month of therapy showed that I had lost movement again. Again no cause for any of this. If another month of therapy doesnt work they want to put me under and crush the scar tissue then insert a pain pump of morphine with daily therapy! Sounds so barbaric!

DoubleDose, you mention metabolic syndrome and I wonder what tests are involved with determining this. I think you mentioned testosterone, triglycerides, cholestorol, BP. Are these the metabolic syndrome tests?

I will be seeing my GP this Monday. He is new to the clinic so want him to run as many tests as possible but as you say in your last post it is amazing how unremarkable the blood work turns out! I was refered to a doc considered a quack ("but he is known to have success with difficult cases") and they are the ones that diagnosed me with a systemic yeast infection. Their office is too far for me to get to with my energy level now so I have to use my GP nearby. They have no clue about a systemic yeast infection and refuse to prescribe the med the quack prescribed. Then last month my candida came back high since being off the quacks meds for a number of months! So will they do some research into systemic yeast infection???

And doubleDose your sense of humor is soooo great - pseudo-Lupus - I love it. I too have tried to stay as positive as possible and keep busy and not think about it but how can you not think about it when after sleeping 10 hours straight (with pain) wake up, have a double cappuccino and feel so tired out 3 hours later you cant stay awake. Go to lay down and sleep for 10 mins then the pain wakes you up so you lay there for another hour trying to find a position just to get another few minutes of rest! I had a 3 hour psychiatric evaluation for my SSI re-hearing and that psychiatrist said I had been tramatized by the medical community! No joke!

take care all,
thanks for the great info and thoughts,
frank

p.s. I have found that half a Provigil (100 mg) has helped me with energy for five or so hours but still must nap soon after.
253566 tn?1219683299
As I mentioned above I will have a GP appt this Monday and would like to come in with a list of blood work to suggest.

Thanks for any suggestions on this.

frank
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