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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.
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184420 tn?1326743408
my friend i just posted about has those joint problems also... head to toe and if he bends over he can barely stand up anymore..
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217229 tn?1192766004
I don't know if I could do a second dosing --- but even knowing what I am going through now --- and what I went through --- I would do the first dosing again.

I am SVR - and hope to remain that way for 20 years or more.

Meki
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Hi everyone,
From what I am reading here and many other places ,seems to be giving me the impression that yes your survivors but you have lost your quaility of life. So much suffering just to stay alive when I do know several people that are living with Hep C and managing fine without having been treated at all. I often wondered why they wouldnt do the treatment but have never asked. My husband lost his job 5 years ago due to his other illness (that is now fixed because we have had to use a free clinic to get help) and we now have no insurance. We have to travel over 2 hours just to get treatment at reduced cost. If all of these other side effects happen to him we wont have the resources to get him checked out . He tried getting something temporary from SS and medicade because of the first illness and was turned down because we dont have any underage children .He is now too sick to even get out of bed much less go back to work..... 9 days is such a short time and I couldn't imagine him being this way for a year .(Doc said that is how long he would be on the treatment) Thanks for the help !
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217229 tn?1192766004
Char --- seriously check out hepcadvocate.com - they have a lot of info on getting you help.

Not to mention -- if he's that bad after 9 days - your docs need to test his blood.

Meki
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253566 tn?1219683299
Well, I got my wish - I guess.

I met my new doc. He seems to know a lot about the long term poisonous side effects of interferon!

I will probably get some answers from him. Is this really what I want?

I am a bit numb about it all right now so cant really stand to write too much but he notices that I am wasting away from my hands. He thinks I have a mess of a immune system, some serious arthritis ailments and maybe much worse. He spend nearly an hour with me. As he was going over the long list of blood work-up list I showed him my list from this post. During the exam I recognized some of the tests as he spoke out loud to himself... Here is the list of blood-work he has for me:

Comp. Metabolic Panel

Lipid Panel

Cortisol AM & PM

Estrogen

FSH

Prolactin

Testosterone

T4

TSH

Urinalysis

CBC Automated Differential

Sedimentation Rate

ANA

CRP Inflammatory

Hepatitis ABC

Hep. C Antibody

HIV Antibody

RA

He lists my main complaints as Hep C, Cryoglobiaonia (sp), adrenal (something).

Well, I am pretty nervous about all this especially the HIV. He thinks that waste noticed in the hands could be from the Hep C, Interferon, or HIV.

I wont be able to do the work-up until Wednesday morn and dont see the doc for two weeks and doubt I will get much sleep. I may go to the hospital records dept and get copies of my blood-work before my appt as the suspense will just make my health worse!

frank
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I hope you get your answers soon along with a  cure.  I will say a special prayer for you.   Ditto on getting copies of your blood work!   I would be too nervous to wait too.  Good luck my friend.
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253566 tn?1219683299
Love the screen name!

Yeah, pretty nervous about it all but I DID WANT ANSWERS. I guess I was hoping the doc would promise taking an aspirin would cure me of all that ails me.

thanks again for those good thoughts,
frank
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217229 tn?1192766004
Frank are you Combined HIV/HCV?

Holy toledo! That would totally make more sense now.

Were you on any HIV meds? Those cocktails?

I will keep you in my thoughts!

Hugs,

Meki
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253566 tn?1219683299
I dont think so but there is a possibility. I have been monogamous for nearly 25 and long distance (Japan/USA) for about 7 years but who knows?

Until now no other doc has thought I showed any signs so???

So no to the cocktails. I have been against HIV testing for myself as I would never even think of that cocktail especially after the Hep C trip I have been on.

meki, thanks for the good wishes,

frank
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Sorry to hear your stories wishing you all the best.  Don't have any problems yet but worried.  Just cruious, is side effects more prominent who underwent longer tx (42 - 58 week)? Do you think age plays any role?
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148588 tn?1465782409
Yes and yes.
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253566 tn?1219683299
Just an update.

Met with my new doc today to go over the test he ran a bit ago. I already had a copy of my records from the hospital so I knew that I was HIV free! Yeah! 90% of the other tests were also negative except for Hep C.

Hep C AB Screen = Reactive. Signal to Cutoff = H28.1 (reference Less Than 1.0).
(Note is in composed text.)

  This patient's sample tests reactive with a high s/co ratios: > or equal to 8.00.  Samples with high s/co ratios have been shown to repeat as positive using a different methodology 95% of the time or greater (CDC MMWR No. RR-3, 2003). Therefore, additional testing for verification of the result is not recommended.

Can someone translate this for me?

He did not run a viral count but wanted to rule in or out the hep c count. So more bloodwork and a CT scan with contrast of chest, abdomen and pelvis.

What is everyones thoughts on contrast?

So again, he says I was definitely not a candidate for treatment in his opinion (1a, low viral count, minor liver damage and healthy non-drinker). Wish I had met him five years ago!

He believes that my liver, hep C or the treatment is messing with my hormones as my estrogen, total (serum) was H136 (130 or less).

So a couple more tests and then I see the doc in three weeks.

thanks for any comments,
frank
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wow this is a long list of comments.   I too cured in 03 geno 2b.  have lots of lingering problems but i was very sick be4 treatment too.      the correct thyroid tests are very important!   I finally have a dr. who did the correct tests and started me on natural Armour thyroid.  You need to get FreeT3, Free T4, TSH, ferritin, Thyroid Antibodies tested!!!!  I cant stress it more. (i see you got a T4 and TSH test and thats not enough!!    go to www.stopthethyroidmadness.com           interferon is notorious for ruining your thyroid.  especially when you were on it so LONG.  
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253566 tn?1219683299
Thanks for the suggestions. I will talk to my doc about those other tests. I will check out the site too (love the name).
frank
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Why the heck did your doc run an antibody test for HCV???  What on earth would that tell anyone.  If you were 'cured' you would just want a PCR to make sure the viral load was still undetected.  

I am not sure I follow what he is trying to determine.

I would think he would be looking for signs of abnormalities that might explain your symptoms after tx.  Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.

But an antibody test???  Just about everyone who is SVR still has HCV antibodies.  They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.

Maybe you need a new doctor.

DD
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Why the heck did your doc run an antibody test for HCV???  What on earth would that tell anyone.  If you were 'cured' you would just want a PCR to make sure the viral load was still undetected.  

I am not sure I follow what he is trying to determine.

I would think he would be looking for signs of abnormalities that might explain your symptoms after tx.  Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.

But an antibody test???  Just about everyone who is SVR still has HCV antibodies.  They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.

Maybe you need a new doctor.

DD
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Unless you're misinterpreting what your doctor did, I agree with DoubleDose.

At this point, you want a viral load test (commonly called a PCR or TMA test) to determine if you have hepatitis c or not. The test you mentioned (the antibody test) doesn't tell you anything other then the fact that you may or may not have been exposed to the virus in the past.

Is your doctor a liver specialist (hepatologist)? Sounds to me like he's not and its not uncommon that non-specialists get these tests confused.

Meanwhile -- until you see a liver specialist -- you might ask one of your doctors to run a viral load test. The one I would recommend in your case is from Quest Laboratories and called "HCV RNA QUALITATIVE TMA". Have your doctor write those exact words on a prescription form -- along with a diagnosis code -- and you can then bring that form to any Quest location to have your blood drawn. Alternatively, if your doctor has an account with Quest, they can draw blood at his office. If for some reason your insurance doesn't cover Quest, then ask the doctor for a "PCR" viral load test. You can find a local Quest Center here: http://www.questdiagnostics.com/

Good luck!

-- Jim
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253566 tn?1219683299
Please dont tell me I might need a new doc as this is my only and best choice. I will stick with him for a couple more months and see how it goes. Yeah, I thought it was kinda strange to run this test as WE should know I have Hep C. I am guessing by conversations with him that he wants to cross every T and dot every I...

Here is the next list of tests he has for me...

Chief Complaint: Estrogen H, adrenopathy, Hep C: CT Scan with contrast of Chest, Abdomen: Liver lymph nodes. Pelvis: lymph nodes.

Diagnosis: Hep C, Cryoglobaliumis, hyperestrogene: Blood Tests: cryoglobaliumis, Hepatitis C viral titter, SPEP immune protein electrophoresis by electrofuatis.

Most of the tests are written in docs handwriting and this is what I can make out, Sorry.

I am pretty sure that he ran a bunch of hormonal etc but not sure. Here is a copy from my post above of last run blood work: Comp. Metabolic Panel, Lipid Panel, Cortisol AM & PM, Estrogen, FSH, Prolactin, Testosterone, T4, TSH, Urinalysis, CBC Automated Differential, Sedimentation Rate, ANA, CRP Inflammatory, Hepatitis ABC, Hep. C Antibody, HIV Antibody, RA.

What should be on the list for next time?

Thanks for the help but please understand that for the most part I have very few choices in docs around here and the few people that I trust in the medical field say this new doc is really excellent. All others just seem to be shills for the pharmaceuticals.

I really do appreciate your suggestions.

frank
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Just to be safe, have him add a viral load test (PCR). I'm glad he's doing testosterone and some other stuff. Good luck.

-- Jim
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I thought you said you were already cured, or SVR?  Why does your doc state that you have HCV?

DD
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253566 tn?1219683299
DD, I am a bit confused as well. I was given the all "cured" or SVR which I guess one means to say my viral count was undetectable. I think that the latest count was a year ago. Maybe two???

It seems that this doc understands that the viral count is undetectable with current tests but of course it is still there. This is how it has been explained to me by everyone...

This doc believes that my liver is still suffering either from Hep C and / or treatment side effects.

Again, more tests are ordered...

frank
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Frank:
It seems that this doc understands that the viral count is undetectable with current tests but of course it is still there.
--------------------------------
Either you are SVR (cured) with no virus count, i.e. UND, or you have a detectible virus count and have active HCV. It's imperative you find out which one you are. The easiest AND ONLY way is to have a viral load test, commonly called a PCR or TMA test. Please INSIST that your doctor gives you one to take the guesswork out of things.

Be well,

-- Jim
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And do make sure get your own copy of all tests done.
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I started to have health complaints decades ago. I was diagnosed with HCV. That's when the doctors stopped looking for what was making my life difficult. The first time on interferon/riba I thought I was going to die for a few weeks/months. I held on until after treatment stopped but I never really recovered from that and it has been 10 years.
I went on treatment, several times since. Each time on treatment certain symptoms would diminish, others would flare up.  But never as bad as the first time. I always complained of symptoms not generally accepted as HCV related, especially since my liver was in really good shape.  I told doctors I suspected an intestinal infection. Fatigue, sweating, headaches, trouble sleeping even when exhausted, jittery "electric" feelings, trouble concentrating, difficulty reading, even difficulty watching a television show (couldn't follow the story). My ability to work went down hill. My hobbies slowly died.  I got bounced between GP's  and gastro docs for the last 10 years without an answer.

A new doc ordered tests 3 weeks ago. One of them tested stool for the prescence of something that indicated malabsorption in the intestine. I seem to have this compound present (either a sugar or triglycerides or something).

Could be due to bacterial overgrowth.
Can be caused by diverticula, blockage, slow passage of feces through the system, IMMUNE MODIFYING THERAPIES, celiac disease....

Kind of like I was trying to say for the last 6 years to deaf ears.

All those years. When I complained on treatment I was told tx side effects, hang in there.
When I complained off treatment I was ignored or bounced to the "other doctor".

Hang in there. Get some testing done. Keep a log of your symptoms. When do they happen, when do you feel better. If the doctors will not listen at least you can start to get a picture and do things that help you suffer less.
The sad thing is that some treatments can cause some normally harmless or slightly annoying problems to flare up. Sometimes treatment can cause immune disorders.
And sometimes the treatment has nothing to do with the problem.
It is hard to say.
What is important is that your doctors take you seriously, and test are done to try to see if there is a cause.

Good luck,

Cheese



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253566 tn?1219683299
Sorry to bring back this old post but... Still suffering and I have two new docs. Yeah, another two new ones. I also apologize for not being on the forum for some time but feeling really sick for some time... I have been lurking though.

The local one, a Dr. Uberti, had Hep B and two liver transplants. His wife, a nurse, had Hep C and under the same treatment as me. She finished five years ago and is suffering many neurological problems.

The Uni Of Pittsburgh is a Dr. Rabinovitz. When I told Uberti that I was seeing Rabinovitz he was shocked that I could even get an appt with him. The guy is suppose to be the very best in our area. So, I met with his nurse last week. I went over my three pages of complaints and really shocked her.

She says that I am One In A Million to have suffered like I have. She says that she hasnt seen any other patient as sick as I am nearly three years after ending treatment. She tried to get me to see The Guru (her name for Rabinovitz) but he was lecturing.

They did do a long list of blood tests and most came back normal (as I expected). My iron is low but that is about it...

They are moving one patients appt so I can meet The Guru next week (this Thursday) and I want to bring a print out of some of the people who have commented in this post to show them that there is a large group out there suffering long term...

If anyone who has not posted their long term problems here (but maybe elsewhere in the forum) could you please add comments here so I can print them out and bring them with me to my next appt. If you have posted elsewhere maybe you can simply copy and paste your main complaint details.

I am excited to have a couple new eyes look over my case, but not much hope that they will be able to help much...

Very best news is that I will be getting my own little house very soon - maybe a move in this week. Have been very busy with that too and hope having my own place will help with my health also.

thanks all,
missed ya all,
take care,
frank
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427265 tn?1444080036
I'm new-ish here and wasn't around at the time this thread ran back in August 2007, but read it this morning with great interest. I believe it's a subject that needs to be explored for both those that have completed tx and those anticipating it in the near future. I appreciated the personal documentation that members provided as they compared notes.

I found the replies sobering, to be sure, but not in the sense that it would terrify me from doing tx if needed. However, it did impress on me the need to explore all facets of tx, not only the sx.

I'm looking forward to your follow up posts and will be thinking of you on Thursday as you meet "The Guru". Hopefully you'll have a few more personal stories to add to your arsenal.

Best of luck and congratulations on getting your own place.

Pam
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I haven't logged on here in a long time. BUT, I am STILL suffering from post tx. Again, after completing treatment in 2003, I did NOT get rid of the virus(luck of the Irish). Here is my old post. I am 55 now. And those little sores just keep on coming. Mostly on my calves and arms, but still the occasional on my back and stomach. One goes away, another comes up. They start like 3 little dots and then they like meld together. They itch, I scratch, they bleed. Cloderm(prescription) eases the itch a little. My Dr. said he has never seen anyone else with this.

AND, I am still fatigued.
I can get it up, but have lost my sex drive. We used to have a VERY active sex life.
And I sometimes get that numbness in my hands.
Thyroid still out of wack.
Blood pressure still high.

If anyone can offer any new ideas on this, I would LOVE to hear.
----------------------------------------------------------------------------------
HI Again. As a newbie, I noticed this post after posting in response to the itch .It seems that this topic is where it should have been posted, so here it is again, with an addendum.



Hi Everyone

I am new here. I completed a year of hell undergoing the Peg-Interferon thereapy.

Got almost ALL of the side effects-fatique, loss of sex drive, hair loss, numbness, loss of breath, joint pain, sleepless nights, and the horrible sores and rashes. I would scratch myself to bleeding.



Anyway, after a year, the treatment was unsuccesful. I still have the virus.



It is now 2 years since I have completed the therapy, and I am still breaking out with the sores and the rash. Primarily on my calves, arms, and behind my shoulders. My Doctor said he never heard of it. What a lying mother-f**** he is. Also, my thyroid is still out of whack.



I think that they should make you aware that the side effects can continue even after the med is discontinued. If they told me at the time, I would not have undergone the treatment. I felt fine when I was diagnosed, but had gotten married and figured if I could rid my system of it, I'd give it a shot. What a fool "I" was.



Anyone else still showing bad side effects after 2 years? Any cures known? I stopped going to the Dr when he said it didn't work and if it didn't work, there was nothing I could do. I DO have my blood tested every 6 months, and all is still the same.



I wish I never heard of Interferon.



After reading the previous posts here, I see that the sex drive of others is still ongoing, as is mine. I don't understand WHY the doctor didn't tell me. He said side effects would stop after a few months. Said it took that long for the drug to leave the body. So has this **** totally altered my genetic make-up? Can anyone steer me to links of articles on the subject? I have done countless Google searches, but can find little info on post treatment symptoms.
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253566 tn?1219683299
Pam, Thank you for your thoughtful post.

As soon as I recover from my travels to the big city I will post all I learn from the Guru.'

Good luck with your decisions.

imnokid, I am really sorry to hear of your ongoing problems. I too wish that I had never heard of Interferon or Pegasys.

Thank you for adding your story. I hope to get copies to the Guru and his nurse. Maybe they can start communicating to our various doctors... that is another topic I would like to start = Getting all our genius docs together to discuss what is wrong with us all.

later,
frank
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315996 tn?1429057829
Lymes desease? hmmm?


How about taking the totally opposite approach? Assume you are a wacko and proceed from there. You would fit right in here. (read: depression, high/low moods, anxiety)
Work on all the cures that wackos use. Be honest. Be a wacko. You are home.

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315996 tn?1429057829

Low protein?

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131817 tn?1209532911
I couldn't read this whole thread, but read much of it. I too have symptoms as DD describes and we have gone over this before. Thanks DD for specifying your symptoms...not done enough!  I didn't SVR and relapsed, but won't do interferon anytime soon. I had a GI bleed twice and had to stop tx at week 47. I didn't clear at week 12, so I needed to go 72. So not surprising I did relapse. As Susan says, it sure is rotten to know how much we have been through and still do and not have SVR.  

Earthman; I too was dx'ed with Fibromyalgia. Lyrica has helped quite a bit. Thankfully it is there for us that suffer. I never had this before Interferon, nor did I have blood thinners. now I do. Hate to scare people, but it needs to be known that this tx is poison and can have lasting effects on our bodies.  

Linda
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233616 tn?1312790796
I never saw this thread either until now.

without sounding insenitive here, we all know right that all the glands are connected right?

Too much or too little of any one substance can add insult to injury....

so Frank you mentioned Estogen 3 times that I noticed. If you are currently on Estrogen therapy this can throw your immune system out of balance every bit as much as the interferon would.

the difference normally coming off interferon, would be say like going from putting 150% octane airplane fuel in your airplane, to putting 80 octane in it....you'd expect a lot of starts and sputters....it takes time for the immune system to return to normal INF production.

However, if I overdosed on any hormone during that delicate rebalancing act... I'd be asking for it....I might as well put water in the plane.......the endocrine system is all intercnnected.....each one feeds off the level of the other, the the pituitary and pineal pretty much run the show. The thyroid is the sergent at arms.....but the reproductive hormones hugely effect our health, and what disease we become prone to.
Women as far more prone to fibromyalgia for instance, and there is an estogen and an HGH component to why that is.

the difficulty with ERT Frank, is that as a male your RNA and DNA are not coded to be operating in an estrogen rich envirionment and that alone could be throwing your entire immune system a continual curve ball each day.
It does that to women who take too much as well, but especially it would do this to a male.

Just saying this in case you had not considered it.
what are your estrogen levels and how did you liver panel come back?
You RA test??????? HAve you has a full work up? ELISA etc.
maryB
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253566 tn?1219683299
Hi merryBe,

To be honest I cant recall about the estrogen mentioned above = crazy brain fog makes it lucky if I remember why I stood up...

Anyways, my estrogen is slightly elevated. Estrogen, Total (Serum) = H136 with Range: 130 OR Less.

I am NOT on any estrogen therapy but there has been talk of that???

They just ran a million tests but I cant tell you if the specific ones you mentioned were done most recently. The nurse called and said most the tests came back negative but my iron is a little LOW (I dont have the number) and that I probably need iron shots.

What is making me really crazy is the weight gain. Even during treatment I was extremely active and ate well but gained weight. The nurse finally put to rest that NOT everyone loses weight on TX. She said gain vs. lose is about 50/50. My gynocomastia is out of control too. I am currently on about 1200 cal and either maintain 230lbs or gain a pound or two / month. Really crazy stuff!

I will ask about the tests you mentioned Thursday.

thanks for the caring post,
frank
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408795 tn?1324939275
I'm really sorry to hear that you are going through so many problems after sucessfully beating down the dragon.  I'm sure someone has mentioned this already but alot of your issues are similar to fibromyalgia.  Hell, there's over 100 posts here and I can't read every single one.  I too have suffered from gerd, it's ugly but it's certainly managable.  Also you said you gained 50 pounds, well are you a larger man than you were before you started treatment?  It must be terrible to be in a position where you can't figure out what is going on or what is going wrong.  You also mentioned your therapist, I've had one of those more than once.  If nothing can be found physically then it could be something else.  If something is bothering you mentally it could manifest itself physically and if something is bothering you physically it could manifest itself mentally.  Keep this in mind if you haven't already, without knowing your full story I mean your full medical and mental history it's very difficult to help you and I'm sure you figured that out by the many responses you've received.  Oh there I go again, it's very possible that you shared a full mental and medical breakdown on one of your responses, my bad.  Well I hope you find out how to help yourself, or how you need to be treated medically.  
God Bless  
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250084 tn?1303311035
I did not get thru all of this, will later, have to run, big day ahead :)

I am very sorry to all suffering post tx. I did 24 weeks, a mth. off and no better yet, but sure I'll get there.  Point is...even 'only' 24 weeks and my body is playing hell to recover. All of you that do the longer tx's go thru a lot more 'damage' (of course) and especially those over and over. I have seen, in reading here, that all too often we end tx and they are done with us! "your done, have a nice life' and than people have to go to their GP's to get help, them not knowing a thing about tx or the drugs, and it's very difficult. Than for those with no insurance, what do they do? My sis in chemo for cancer was told at Shands that they are starting a program with Dr.'s to treat any chemo patients as their issues/problems are different than a 'normal' patient, etc. I think that's long over due and a great thing! Other than continuing with your liver specialist, GI, any post txers have that problem. How can you ever really determine what was caused by these drugs, isn't and so on. It's just a huge puzzle and you suffering need answers!
   Sorry your all suffering still. DD and Frank....really hope you find answers, solutions, get better. It has to be incredibly frustrating for you. Before I was finally, properly dx'd with the Hep C, going to Dr. after Dr. being told "your depressed, your fine, maybe this or that" KNOWING something was just wrong, drove me nuts! To finally get an answer was, while crushing, such a relief! I hope you get answers, healing somehow.

LL
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276730 tn?1327966546
this post is from a year ago. many of them have been since yesterday????
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I myself have had the treatment over 3 years ago now.  I ended up with fibromyalgia, my illeostomy developed problems.  I've heard from others who when were on treatment developed gambling problems.  The list goes on.  It's tough when people think it's all in your head.  There is no magic cure like everyone thinks.  It's going to take a long time for all of us to feel somewhat better.  And you really are never cured 100% of the Hep C your viral load is just not detected in the blood.  Once liver damage occurs it takes a long time for it to reverse if it ever does.  Once it's done it's done.  Keep going and do what's right for you and beleive what your feeling is real.
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Have you tried the drug Nuvigil ? I take it and a B 12 shot every other week. Nuvigil every morning it seemed to help me some but I can relate to the post tx symptoms especially the headaches I just know my boss is going to fire me any day now. I took the treatment had a low viral count around 12k and geno type 2 I took it for 2 months and thought I was gonna die. The doctors were pissed because they wanted me to take it for 6 months. This was dec 2010 and jan 2011 they said I was throwing away a chance to be cured of the virus by stopping so soon. Well 9 months later I m still feeling like crap and thinking maybe I should go back through it again. This time I changed to a doctor closer to me at  university in Jackson ms. I go over talk with her and we do the test it comes back a couple weeks later nothing. No viral loads I we run it again and then again in 6 months same thing. But my thyroid is still screwed up and the headaches are  constant. So I can't imagine taking the treatment any longer than I did. I think it would have killed me. But you can't get one doctor to say anything bad about the drug. The fatigue when I can make it to work I collapse when I get home and the weekends are spent  in bed resting. This drug didn't save my life it stole my life.
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253566 tn?1219683299
WoW, cant believe that you found this thread MMS...

...sorry to hear your ongoing issues... it seems that you have cleared the virus in blood tests at least CONGRATS!

I have been fighting for 1.5 years to get back on Vyvanse (somewhat similar to Nuvigil) and just yesterday picked up my first script after this long battle to be back on the main med that helps my main disability of Chronic Fatigue Syndrome!!!

All my other numbers are normal except Iron which is all messed up in every way.

I too have a brand new GP who had studied at one of the Mayo Clinics. His father studied at another Mayo and a brother at another Mayo so he is going to gather a team of family and Mayo colleagues to discuss my ongoing situation and the Mayo P.I.S. (Post-Interferon Syndrome) analysis.

We also talked about Low Dose Naltrexone (LDN) and the possibility of adding this to my cocktail of meds... The new doc is pretty excited to have me as a new patient and re-establish research buddies at Mayo - which I have been looking for now for many years!

If you look up P.I.S. (Post-Interferon Syndrome) you will find others suffering long term and maybe educate your doctor to the new Mayo term.

Best of luck in your goal toward a healthy future,
frank
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317787 tn?1473362051
Hi Frank, I really admire you for not giving up, for continuing to look to find out what is wrong.
Take care
D
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253566 tn?1219683299
Thanks Dee,

I dont think I am any different than all the fighters, like yourself, who advocate for ourselves and others who come to this site everyday.

It pains me when I see or hear about others who cant or wont advocate for themselves and just allow the medical/big pharma run over those so desperate for help!

Keep up the GREAT work yourself,
f
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253566 tn?1219683299
Quick update:

Seems that even with all the connections my GP cant get much from his Mayo Clinic friends.

What they would tell him was that The Mayo Clinic is treating PIS with LDN and that is all.

It is great to have confirmation from the Great and Might Mayo but... too bad Mayo is sooooooo secretive!

Got a zillion things to catch up with... not sure how many peeps will see this and should post a new thread on it all... so Watch Your MH Screen!
lol
f
p.s. Once my GP figures it all out I will be testing out LDN against my PIS!
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317787 tn?1473362051
Hey there Frank, did you ever get your viral load checked? I know that was back in 2007 when he checked you for HCV but not the viral load.
Just thinking about what you have been through what you continue to go through.

Did you try the LDN?  I hope you don't mind the questions.

I am hoping that you and DD find some answers.

This is almost as bad as trying to find out what is wrong before you are diagnosed with HCV.  It took me over 11 years to find out I was HCV positive.  Almost too late for me.

d

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253566 tn?1219683299
yeppers, had all the viral load checked, a number of times! Pretty sure began at around under 300,000 but will have to check the old booklets/notes.

My GP studied at the Mayo and he has asked them about PIS being used with LDN. They informed that they are but would not tell him anything else (since he is no longer a part of the super secret team (UGH)... so we are going to have to start our own program... couldnt be fast enough for me to begin!

I think it was more than 11 years for me so Dee you def have time mess up yourself with Big Pharma junk, hehehe

Thanks for your continued interest,
your friend,
frank
p.s. sorry, I cant keep my eyes open anymore!!!
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I've been off the Int/Rib for quite a few years now.  

I'll most likely have to deal with the chronic side effects this the rest of my life.

Which side effects?  About 98 percent of what everyone else here is describing.  Ditto.

I'm still relieved the treatment worked.
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317787 tn?1473362051
Hello there! This thread is old, you might do better to go here

http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670

and add your story to a more current thread as you will get more response.  Thank you so much for writing
Dee
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New here, havent been able to get ANY help from medical doctors or community, and they always blame it on something else that doesnt even make sense!  Perimenopause does not interfere with peoples lives in the way my issues have!  And now Iam seeing that there really isnt any help for those of us to seem to have long term sx after tx.  I feel like Ive been poisoned and I was so much MORE healthy living with the hep c than I am now... Yes I got SVR (last I was checked) but MY truth is I was happier before tx!
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Can someone explain "interferon autoimmune syndrome"
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683231 tn?1467326617
Hi leeann71070
This is a really old link from 2007 the last comments were from Oct 2013.
The best way to get your question noticed would be to click on post a new question on the top right on the page. Otherwise your question will most likely not be noticed. There is also another group you might be interested in hepatitis c post treatment issues

Good luck
Lynn
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683231 tn?1467326617
Here is a link to the post treatment group
http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670
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