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Doctors let me down

I am a 48 year old married male & have been for 18 years.
I have been faithful to my wife sexually during that time.

Like most people my age I smoked pot when I was younger but never did IV drugs.

Prior to getting married I did have numerous female sexual partners, again like most people my age.

Other than knowing it wasn't the Christian thing to do it didn't seem so bad until the aids issue came along and got my attention big time.  So I think I've been loyal for 18 years, had an aids test twice, came back negative both times so I'm ok. WRONG, WRONG, WRONG.

I have complained of numerous ailments for years that were always treated as If I had nothing better to do than go bug my doctor, so I finally just said ok maybe this is just the way it is.

Reflux, heartburn, gerd, hiatal hernia, elevated blood pressure, restless sleep, back aches, vision problems, kidney stones---enough already!!!!

Point is it was always explained away as no big deal. Finally my new primary dr. was concerned at my ast & alt results and chose to do a hep c test.
YEP!! I GOT IT!!

Of course like everyone else I'm sure I was ready to pick out a casket say my goodbyes and feel sorry for myself.

Then I got mad, where did it come from? How did I get it??

Well I guess I will never know where or how, but personally since I never did IV drugs and they act like it's almost impossible to get it from a woman through sex, I have never had surgery or blood transfusions, I think it either came from dental work or the IV when I had kidney stones or the shots, those are the only needles I have ever had, I had hep boosters as a kid to keep from catching it from neighbors.
THAT'S IT!!!!!!

SOOOOOOOOO, I go back to all the dr.'s I had used for the last 18 years and guess what was hidden in their files on me that they had never mentioned____ HIGH AST & ALT results every single time!!!!!!!! --Never mentioned it to me once--some were 3 times higher back in 1984 than the recent one that had this dr. to test further.

NOW IM REAL MAD!!!!!!!
Had I known that I had a high reading, I have enough sense that I wouldn't have drank anything with alcohol. 

But since I didn't have that option thanks to the good ol doc's, I drank beer daily all that time.
I just love this pay out the rear; get nothing for your money, wonderful world of the HMO world that flat does not care or listen.  If this is not flat out blatant malpractice then I don't know what is.

I have all my medical records and it's as plain as black & white but no one cares or will help, lawyers are a joke.

NO THAT I CAUGHT MY BREATH AGAIN, MAN THAT FELT GOOD!!!!!!!
I am dealing with it daily, I have given it to the LORD; he does have the final say in this thing.
I decided not to treat I have yet to see or hear anything that would make me go through a liver biopsy, lose my hair be that sick, and when you stop treatment it comes back.

I have geno type 1 A - and the way I see it when you break it down to the real numbers - people that have been treated with my type which is the most common type it's about 15% real cure rate.
Not good enough numbers for me, maybe when something better comes along I will consider it or If and when I get sick.

Right now I can do anything I have ever done, I ache, sore muscles etc. but I have been like that for years.

My liver sonogram was supposedly fine & alt & ast is just a little over the high end of the scale so for now just watch and see approach.

GOD BLESS AND BE WITH EACH AND EVERY ONE OF YOU AND REMEMBER THERE IS A HIGHER AUTHORITY.

Hi, my name is Sally and I would like to share my story dealing with the hepatitis C virus. 

I was diagnosed in the spring of 1998. I had been experiencing a lot of heel pain in my right foot from walking during daily exercising. I went to my Internist for an evaluation and treatment. She did some routine blood tests and everything looked normal. I had hepatitis B in 1982, so I was told at that time, to periodically have my liver enzymes tested. My liver enzymes (ALT and AST) were in the normal range. She gave me a prescription for a high dose of Ibuprofen for the inflammation, sent me on my way, and told me to return in one month for another evaluation. At my next visit with her, low and behold, my liver enzyme function tests were elevated (Ibuprofen tends to elevate these tests). Being the great doctor that she is, she then tested me for the hepatitis C virus. The test came back positive, and from that day on, forever changed my life. She referred me to a liver specialist for further testing... 

My new doctor, Dr. Michael Ryan, was the doctor I was looking for. He was very knowledgeable with the hepatitis C virus, and had many clinical trials going on at the time. I knew that I was in the right hands with his experience and knowledge. He did more blood tests, one of them being the HCV RNA by PCR (Hepatitis C Virus - Ribonucleic Acid Assay - Polymerase Chain Reaction) which came back positive. The test revealed that I had 178,000 copies of the hepatitis C virus per ml. of blood. He then indicated that I needed a liver biopsy to see what kind of liver damage I had going on from the virus. I was very scared at this time because I am in recovery. I was petrified that I might have cirrhosis even though I had been sober for over 3 years.      

A few weeks later, I had my first liver biopsy. I was given Demerol 10 minutes before the procedure, which really helped to calm my nerves. First they gave me an ultra sound so see if they're were any tumors, and to help them pin point a good location for the biopsy. Everything looked good, so the doctor started the biopsy. I didn't feel anything until he said it was all over with, then the right shoulder pain set in. This happens to some people and not to others. Lucky me! The nurse injected me with another shot of Demerol, and within minutes, the pain was gone. I stayed for an hour, and then was released to go home. Now, was the hardest part. Waiting for the results to my biopsy. On a score rated from 0 (being low) to 22 (being high), mine was a 3. Very little damage to my liver from the hepatitis C virus. From that day on, I was able to stay positive and really focus on getting prepared for treatment...

I started a study with Schering-Plough's Intron A and Ribavarin or called Rebetron therapy on August 16th, 1998. The Intron A is an injectable drug, the Ribavarin are capsules you swallow. I started with high induction therapy consisting of 5MU of Intron A daily for the first 30 days. I had heard that some people experience flu like symptoms for the first few days. After my first injection, I waited for the symptoms to appear, but they just never happened. My first month was a breeze. Then, as I dropped my dosage of Intron A down to 3MU three times a week, I also introduced 1000mg. of Ribavarin to my system. At this same time, I had my first PCR with the study. I was negative < 100 copies of the virus, after only being on the therapy for one short month.    

About the 12th week of treatment, I started to experience a lot of joint pain in various parts of my body. It would take me 10 minutes just to get down 13 stairs in the morning. I was hurting bad! 

The next time I saw my doctor, I told him about all the joint pain I was having. He told me I could quit the study if I wanted, or I could continue with a 70% chance of becoming a sustained responder. How could I quit this therapy when my PCR was showing that I was negative with the virus? I just couldn't quit! I reduced my intake of Ribavarin to 800mg. and also I changed my Intron A regimen around. Instead of dosing with 3MU three time a week, I divided up my dose to 1.5MU six days a week. This made all the difference in the world. A little a day, kept my virus at bay, but also helped relieve the roller coaster side effects you get from dosing three days a week. I was still getting my 9MU of Intron A each week. I had another PCR at week 12, 24, 36, and at the end of treatment, week 48. All my PCR'S showed that I was still negative < 100 copies. Sure, I had some aches and pains, hair thinning, brain fog, weight loss, headaches by the dozen, and finally some thyroid problems, but the treatment was well worth it to me. I recently had my 3 month post combo PCR, and the results are still negative. One more test in January, and then I will know if I will become a sustained responder. If I had to do this all over again, I would. Not only has hepatitis C changed my life for the better, it has taught me to take my medical health into my own hands. I am now more knowledgeable in the medical field, and am now the new support group leader in my area. 

One thing I still don't understand…Why it took the hepatitis C virus to change my life around, and make me the person I am today…

*Update

On January 12th, 2000, I received my 6 month post combo PCR test results. The test was negative, <100! I am a sustained responder to therapy! Today is July 10th, 2000 and I had my blood drawn for my 1 year post combo PCR test. Soon I will know if I am still sustaining a response. They should have called this virus Hepatitis W... More Wondering, Worrying, and Waiting! July 17, 2000 I received my 1 year post combo PCR blood test result. I'm still showing a "UNDETECTABLE" status! There is no virus detected in my blood. I am now considered a durable sustained responder! I will be having my 2 year post combo PCR on July 24, 2001. I will post my results when I receive them. Well folks it has been 2 years since I took my last treatment of Interferon and Ribavirin. Today is July 30, 2001 and my 2 year post PCR returned as "UNDETECTABLE" again! My doctor has now used the "cured" word with me!

Sally's Hepatitis C Support Site
http://www.hepcaware.com

My name is Bridget.  I was diagnosed with Hepatitis C in January, 1995.  I was also pregnant at the time.  My son is Hep C negative.  He has been checked 4 times and still remains negative.  He is now 6 years old.

When my son was 9 months old (approx. April, 1996) I was placed on interferon.  I was not screened at that time for depression.  Also, I did not know I was suffering from postpartum depression, but I was.  I had to be hospitalized.  Till this day I remain on antidepressants.  This was a very difficult time for me.  I was worried about my son's future without a mother.

I decided to get proactive and started a support group in New Orleans, LA for people with Hepatitis C and their families.  It remains my goal, to set those who are newly diagnosed mind at ease.  The initial diagnosis is frightening, especially to a pregnant woman.  The support group remains in existence now for over 5 years. 

I have been on and off of every treatment available, with the exception to alternative treatments.  They have not been able to put me into remission.  I am currently in a clinical study with Roche's, not yet FDA approved medication with Ribaviron.

I will continue to hope and pray that this treatment will be the silver bullet.  If not I will keep taking it one day at a time.

I got the call from my doctor on October 27th, 1998.  I thought my life was over.  I thought it was a death sentence.  I spent three days crying.  When I asked my doctor to run an HCV test, I figured there was no way I had it.  I knew I was at risk because of tattoos I'd gotten in the early 80's but I had no idea the impact this disease would have on my life.  The only bright spot was when I had a liver biopsy in 1999, it came back so normal that the pathologist called the doctor and asked what he was supposed to be looking for!  I have been to several doctors who were supposedly experts and only one is willing to listen and read the research that I have (literally) several dresser drawers of.  At this time, treatment is not indicated for me so I have not had to deal with all those fears and issues.  I do have symptoms of fatigue if I over-do, but that is worst thing about it, and I try to keep the negativity down.  It's a hard disease to deal with because there is no definitive one-size-fits-all treatment that will cure it.  It's a biopsy-to-biopsy thing that leaves you dreading phone calls from labs and pathologists and doing the best you can do in between times.
Seanna

Lucy the Cat
WebMD Member

Twenty years ago, when I was 19, a routine physical revealed liver function test abnormalities.  At that time, HCV had not been discovered.  When the doctor did further testing, he diagnosed me with non-A, non-B hepatitis and sent me on my merry way.  Through my twenties, I began to have various gastrointestinal problems, lots of musculoskeletal problems, aches and pains, etc.  In retrospect it seems that all these things were manifestations of the virus, but through countless doctor visits and testing which showed no visible problems, I was told that the problems were in my head, brought on by stress, that I just needed to relax.  Sad thing is, at the time I believed it. 

In 1987 or 1988 I was sick for the better part of six months...nausea, stomach pains, and extreme weight loss.  The physician I went to at this time performed a number of tests, including a liver biopsy, at which time I was found to have a mild case of chronic active hepatitis.  He told me to watch my alcohol intake, and to have my liver function tests monitored annually.  He also told me not to worry, that as long as I was 'careful' I'd be fine. 

I had been drinking heavily ever since my early teens.  By the time I was 18 or 19, I'm certain I met the qualifications for a diagnosis of alcoholism.  But I always managed to do well, in school and on the job.  As many women are, I was a pro at maintaining appearances.  When the doctor told me to reduce my alcohol intake, I suppose I thought I could.  But I could not, and managed to get the doctor to tell me that it was ok to drink occasionally.  I really thought maybe I could just drink once a week, or just on weekends, or just once during the week and weekends, but I could not.  That started a very difficult period of knowing that every time I drank I was causing myself harm, and knowing that I couldn't stop drinking.  Of course I didn't think I was an alcoholic, not one of those!  Things got worse and worse, I felt sick on a daily basis, and felt suicidal too.  In 1991, a diagnosis of Hepatitis C was given; the doctor suggested interferon right away, but I decided I wanted to wait.  I was still lying about my drinking. 

By the summer of 1991, I had started to hit bottom, as people in recovery say.  My husband left, I was in trouble at work, I saw no point to life and I knew I was killing myself.  I had a few friends who did not drink, who helped me start to get some help, and whom I followed into 12-step recovery. 

I have now been sober for over six years.  My health is much better.  I switched physicians and am on my second course of interferon, monitored by a physician I trust.  The doctor I see now has honored my use of alternative medical care, specifically the use of milk thistle to boost my liver functioning.  It is certainly eye opening to see that the health problems I experienced over the years weren't all in my head, and that this thing I have is a real disease.  The one day at a time philosophy helps me enormously, not only with my alcoholism but with dealing with the ups and downs of HCV. 

I am now back in school, interested in researching people's experiences with HCV.  Given the gender bias in medicine, I am particularly interested in women's experiences.  I am also interested in the experiences of people who don't have access to good private health insurance.  The role of the media in informing the public about the disease interests me as well. 

That's it from here. Thanks for reading! 

I went to the emergency room August 25, 1998 with some pretty vague symptoms, upset stomach, abdominal tenderness (NOT URQ pain) generally not feeling up to par. The doc did a general workup and also liver function tests. Those came back elevated and I was referred to my family doctor who did a HCV antibody test. This came back reactive and I was sent to the Hepdoc. My first visit with the Hepdoc got more blood drawn for lots more tests, among them a PCR. 3 weeks later I went back, the PCR confirmed the HCV antibody test and I was scheduled for a biopsy. The biopsy came back stage 1 with minimal portal fibrosis. The LFTs are: Albumin 4.2, AST 43, ALT 77, Total Bilirubin 1.1.

I am also a recovering person, on January 13, 1999 I will have seven years clean and sober. We talk a lot about the physical aspect of this disease but we shouldn't ignore the emotional side of it. At first I felt defeated, this was one more thing that I had to deal with, not only do I have to deal with recovery from alcohol and drug addiction and TMJ (Temporomandibular Joint - a jaw disorder) which causes me daily physical pain now I have a chronic potential debilitating liver disease! Dealing with life on life's terms was difficult enough and now I have something else that may or may not, in time, kill me. At first I felt like well this will do it,(I'm not sure what "it" is) maybe it could push me over the edge into LA-LA land! I felt extremely scared (an emotion familiar to all recovering people), alone, "why me", self-pity, victimized, even maybe a little martyrdom (that was short lived) and overall powerlessness! I have worked at my own recovery from addiction with as much effort as I possibly could, I was emotionally and mentally tired. This diagnosis made me feel like I was "broken" or defective, a feeling that I had gotten away from some in my recovery and now it was back.

It also brought me face to face with my own mortality. Once again powerlessness raised it's head! I have always been afraid of dying and this brought that home.

In my recovery from my addictions I had to reach out to others and now I had to reach out even more. I had to rely on doctors and the system. I how to become willing to reach out again for support, guidance, and to the people that I had trusted so far in my recovery.

We talked about the feelings and the emotions, made some good decisions and then followed through with them. But after everything that has been said or done, good bad or indifferent it is just one more thing that Jerry will have to deal with, I don't like it but with a program of recovery, the love of my family, the support of my friends and my 12 step support group I can. They have all taught me that it is not how long we live but how we live. It has helped me to put a better perspective on my family, my job, my friends. Like with most things, I am not a gracious person, but in some ways it has made me a better person. It takes what it takes to get me to where I need to be. I was never promised a rose garden and trust me I have never received any roses! But what I did receive, if I live to be 100, I will never be able to pay back.

To those who visit this website, if you read this you will be helping me by allowing me to share with you what I have learned and experienced. Regardless of what happens, the best part of our lives may be still in front of us. We have a lot of feelings and emotions, ups and downs but it is just part of life, but hang in there, nothing is forever, everything is changing, but it sure isn't BORING!!

December 1, 1998
I'm fixing to go to the doctor now and will take my first shot about 4:30.

I was scared about it for about a week and finally went through all the anger, denial, emotion and fear about it. I felt very powerless, one more thing was going on in my life without permission. I was angry, disturbed and distressed. I was afraid that I wouldn't be able to work, that I would have to depend on others. I felt hopeless, I felt that I didn't have any real choices (powerlessness again!). I thought that I would just have to be at the mercy of the doctors and interferon and this disease, I felt that I would have no control over my recovery from this disease. I found that by working my 12 step program of recovery that I could have some control, I could pick the doctors and do my research and be an informed consumer of medical care. Just like my other recovery it is about choices.

I just got back from the first shot, no big deal, its been about 30 or 40 minutes.
1 1/2 hours, cold chills, burning in the throat, a little light headed, cold hands.
Drinking as much water as possible. Took 3 500 mg. Tylenol, Doc said take no more than 4 a day!
Nervousness and partial headache after 2 hours.
2 1/12 hours, nausea, head hurts worse. It feels like I've got a higher fever.
Nausea, headache is worse, bad taste in my mouth, Sprite ain't worth a flip!

December 2, 1998
I tossed and turned all night, cold sweats, headache, shivers, bad breath, felt like crap, got up, headache, dizziness, upset stomach, chill in my hands, sore in my neck, just generally in my bones I think. Off base a little bit, a little confusion. Gotta keep trying. Gotta Kill the Dragon!!!
Seem to be just generally ill, feverish, hot, maybe a little confused. Been drinking a lot of water. I ate a cheeseburger today and it stayed down without too much trouble. Took 1 500 mg. Tylenol just a moment ago for the headache.

December 3, 1998
Woke up feverish, achy but seem to be doing better. I take my second shot today.
Fixing to take my second shot. Still a little woozy, achy. This is the first shot I've given myself. I watched the tape, listened to the information that's been shared, it went pretty easy, I guess it went in the right place, there was no blood or anything. Just shot it in there and now I'm waiting to see what happens!
A little diarrhea (not the dangerous dehydrating kind, though) otherwise feeling o.k.
Dizziness, nausea, headache, still drinking lots of water. Hot, feverish, dizzy, kind of a burning in my back. My eyes were burning,"arthritisy" kind of feeling, stomach upset, still got a good headache.

December 4, 1998
Had a bad time from about 2 a.m. until about 4:30 a.m. went back to bed and slept a couple of hours. A friend is coming over to visit a little bit. Don't feel as bad, still feel bad, a little shaky, nervous.

December 5, 1998
Went to buy a Christmas tree this morning and decorated it. Took my shot in the middle of decorating it when my wife ran to the store for yet another string of lights! Then we went to the Christmas parade.

December 8, 1998
Fourth Shot. More depression today, ate a good meal, pretty decent day. We'll see where it goes.

December 10, 1998
Fifth Shot, the physical symptoms remain about the same.

December 12, 1998
Sixth Shot. The physical symptoms are about the same with serious depression.

December 13, 1998
Still very depressed increased daily dosage of Remeron from 15 mg. to 30 mg.

December 14, 1998
The depression is much better now that I have increased my medication (Remeron).

December 15, 1998
Seventh Shot. I didn't drink as much water and WHAT A HEADACHE!!!!

December 17, 1998
Eighth Shot. The physical symptoms remain about the same with every shot, headache, diarrhea, nausea, achyness, dizziness, confusion. It is the emotional side effects that seem to vary.

December 19, 1998
Ninth Shot. Once again the physical sides are about the same, this time along with the depression came tremendous anxiety. I had the good sense to realize that it was interferon induced and KEPT MY MOUTH SHUT!

December 22, 1998
Tenth Shot. The physical sides are the same and the emotional stuff was manageable this time.

December 24, 1998
Eleventh Shot. The emotional sides this time were tough. It was pointed out to me that the days that the emotional sides are worst are the days that I don't go to work. It has been suggested that structure of going to work helps manage the attendant anxiety and depression. I will watch for this and see if indeed there is truth to this.

December 26, 1998
Twelfth Shot. I went to see a friend today and waited until evening to take my shot and it seemed the emotional sides were a little more manageable. Maybe there is something to the idea of occupying myself on my days off rather than just "waiting for shot time".

December 29, 1998
Thirteenth Shot. Burning and itching started on my back with this shot. It is not like regular dry skin, it seems more tender, possibly because it is chemically induced. I continue to drink lots and lots of water and am careful to eat prior to my shot. Eating fruit on a daily basis makes a big difference not only in my regularity but in how I feel, I try to eat at least 2 pieces of fruit everyday and usually eat 3 or 4.

December 31, 1998
Fourteenth Shot. HAPPY NEW YEAR! SSDD (same shot, different day!). This shot was pretty much like all the rest. I hope that I have "leveled off" in terms of side effects.

January 2-9, 1999
Fifteenth, Sixteenth, Seventeenth and Eighteenth Shots. Pretty much just like the Fourteenth! January 2nd and 9th were Saturdays and once again I occupied myself and the "Saturday depression and anxiety" were not really noticed. I continue to be fairly dogmatic about sticking to my routine prior to and immediately after my shot of drinking lots of water, eating well, taking Tylenol, etc. The times I haven't been as vigilant about this are the times when the physical sides have been worst.

January 11-18, 1999
Shots Nineteen through Twenty-two. Same Shot, Different Day! Managed care reared it's ugly head and we had to change docs! What a pain. We went to see the new one today for the first time. I like him, he took time to answer questions and is a fan of the combo. I'll be starting on that Wednesday. I'll be sure to keep you posted on that one! More fun with chemistry!!! What was it Timothy Leary said about better living through chemistry??? I really wonder if he'd ever heard of interferon!!

Wednesday, January 20,1999. 
I felt very powerless as a result of having my medication changed. I had been taking interferon since December 1 and had finally gotten used to that and now there was something else to adjust to. I had wanted to go on the combo from the beginning and I understand why my first doc didn't put me on it (it wasn't FDA approved for naive patients at that time) but it still felt like I was being controlled by the docs. Here is a link that gives the manufacturer's "party line" about the combo. I was anxious about taking the pills the first time because I didn't know how they would effect me. I was a little anxious and irritated, I don't know if that was the Riba or anticipation of the Riba. The first pills coincided with "shot night". I felt a little nauseated, feverish, ringing in my ears, a little confused and I didn't sleep well. I continued to drink lots of water and eat my fruit.

Thursday, January 21, 1999
The day after the shot and my first dose of Riba I felt nervous and anxious, had a headache, stiff neck and shoulders and was a little confused.

Friday, January 22, 1999
Nothing new about this shot. The combo seems to be having very few additional side effects.

January 23 - 7, 1999
Monday, Wednesday and Friday are shot days and everyday is a ribaviran pill day!! There are really no new sides to report, except I am noticing dry skin on my back. It doesn't feel like "normal" dry skin, I think because it is chemically induced, it feels like parts of my lower back are burning and the skin is hot to touch.

I have noticed some more emotional sides though, I have been restless, I have been more emotional than usual, I haven't slept well a couple of nights. I have worked everyday and have had some good productive days, I have even gotten in some overtime at work! The emotional sides may have been exaggerated by some stress in my life that (believe it or not!) has nothing to do with HCV.

Sometimes when we talk we talk we leave out the emotional, vulnerable side of ourselves not only am I in recovery from HCV, I am recovering from alcoholism and drug addiction. In the seven years and 25 days of my recovery I have touched every emotional bottom and the recovery program has given me the ability with the help of others to match calamity with serenity. I have had full, beautiful, wonderful days, weeks, months and years but I have also had hard, difficult, emotional, sad days. Every day that I live is of equal importance to me, all of value, and make up who I am. I wouldn't trade one day for anything else. I have learned that it is o.k. to be scared, to realize that I will not live forever, but because of my own recovery program, I know that it is not how long I live, it is how I live. Maybe for the first time in all my life it is o.k. to feel absolutely everything in my life, the good, the bad, and the ugly and for that I will always be indebted to the program that saved me.

I got my bloodwork back from two weeks into the combo and my liver functions are all within normal range and my blood counts look good, however my platelets were down a little, but doc said not to worry. I don't have the numbers but when I get them I'll post them here.

February 8-28, 1999
The most notable side effect (currently) is I seem to be more agitated than usual. There seems to be some additional anxiety since starting the Ribaviran. Of course, there has been some stress in my life that has nothing to do with Hepatitis C that could have been causing it. I have also noticed that I am a little more sensitive than usual and am quicker to "feel sorry" over situations. I have not been sleeping as well, my appetite has been somewhat decreased and I've had headaches. I have worked everyday with the exception of one, though.

March 1-8, 1999
Got my PCR back and it has dropped from 921,740 copies/mL on 9/30/98 to 130,000 copies/mL on 2/11/99!!!! AND the genotype of this bug is 2B, which is one of the better responders to the combo (about 70% I believe). Here is a link to an article about genotypes. My hemoglobin and hematocrit continue to hold steady at 13.6 and 38.8 so the combo isn't doing any damage in that area. All of my liver functions are within normal range, AST or SGOT=34, ALK Phosphatase=49, Albumin=3.8. I think this is all really good news. We aren't done yet but we're making really good headway against this dragon!!

March 9, 1999 through April 18, 1999 The past 6 weeks have been eventful. I have been experiencing all the usual sides in addition to a marked increase in sensitivity to sound and the inability to sleep. It took me quite a while to determine the cause of the sleeplessness and I finally determined that it was due to the increased sensitivity to sound and I got some earplugs and low and behold! I could sleep again! I am no longer taking Remeron, I have determined that it is no longer necessary.

I had blood drawn April 1, 1999. Here are the results:

DBIL: .1
T Bilirubin: .8
Albumin: 3.6
ALT: 37
ALK PHOS: 50
AST: 38
Hemoglobin: 12.5
Hematocrit: 35.9
Platelet Count: 143

April 18 thru May 12, 1999

The side effects have remained about the same only intensified somewhat.

Three weeks ago I took off work because I was exhausted mentally and physically. The kind of work that I do (sheet metal mechanic) requires the ability to think and act quickly. I went to my employer and asked that I be allowed to take off until I got "over the hump". I felt that I was a potential risk to myself and others at work and the stress was also showing at home. I have reconsidered my decision last month to eliminate the Remeron and decided that the Remeron is indeed important for the control of anxiety and am have been taking 30 mg. per night.

I am now taking Ambien, 10 mg. every night to help me sleep. During the past three weeks I had gotten down to about two hours of sleep every night and it was nearly incapacitating. My sleep is better now, but I am still exhausted and confused. My wife suggested that part of what I am feeling may be depression brought on by the Ambien, we consulted the doctor and he agreed so we are increasing the Remeron to 45 mg. beginning tonight.....we shall see.

At work I felt very vulnerable, very unsure, confused, poor concentration. The things that I normally do as a routine I have to remind myself to do (morning meditation, for example).

I have been seeing a psychologist for the past 4 1/2 or 5 years and since my diagnosis my psychologist has been extremely important to me, to help me keep my perspective. He pointed out that I am suffering many losses as a result of Hepatitis C; some mobility, mental acuity, and some independence. The grieving process takes place whether we want it to or not and whether we know it or not!! Just understanding that was happening was a big help.

I am adding a nifty new link to the links page. It is a wonderful "Combo Survival Guide". Check it out!

MAY 13, 1999
THE DOCTOR CALLED. I AM PCR NON-DETECTABLE!!!!!!!!!!HOORAY!!!!!!

May 14, 1999
O.K., I'm a little calmer now. We go to the doctor on Monday and get all of my blood test results and we'll post them then.

MAY 13-JUNE 23, 1999
I finished all my meds June 23. The sides from May 13 thru June 23 were pretty much like they have been except I have experienced a marked decrease in appetite and energy. I have been drinking at least two cans of 360 calorie "Ensure" (actually the Wal-Mart equivalent, that tastes just the same) every day in an attempt to keep from losing any more weight. I have lost about 12 pounds so far and the "Ensure" seems to be helping me maintain my weight where it is.
JUNE 24-26, 1999

I have been having a TERRIBLE time sleeping since coming off the meds. I am still taking Ambien to sleep and 45 mg. of Remeron nightly (per my doctor's orders), if I continue not sleeping through Monday I think I will call him and see if we need to adjust something. It is also possible that my brain chemistry and body just have to adjust to not having Ribaviran and Interferon in them just like when those substances were added everything changed! Who knows...I am planning on going back to work Monday, July 5. I'll update this again next week and let everyone know how its going.

June 26, 1999
A note from the webmaster: Jerry's appetite seems to have returned in full force this afternoon and evening but his taste is still distorted. At this moment he is prowling through the kitchen tasting everything he can get his hands on and not liking any of it! Hopefully that will clear up soon!

September, 1999
A return to the hepdoc revealed that the virus has returned!!  So we start back on the medicine again, he says this time for 9 to 12 months!!!!!!!!!!!!  I know that I CAN survive the combo again, but I sure do dread it!   I feel very disappointed and frustrated that it didn't work the first time, but I am not one to quit, so "HERE WE GO AGAIN!"

September, 1999 through June, 2000
  I really didn't want to take this medicine again, because I felt so bad the first time.  The diarrhea, headaches, confusion, extremely poor appetite.  I started back on the same routine as the first time.  This time the emotional impact seemed greater.  I tended to have suicidal thoughts more frequently than the first time.  This time, however, I was more willing to seek professional help and take the prescribed medication.  An additional medication was discovered, quite by accident, that really made a remarkable difference in my overall emotional well being, Wellbutrin, 150 mg., twice a day in addition to Remeron in doses from 45 mg. per day to 90 mg. per day toward the end of the nine months.  The Wellbutrin was originally prescribed as part of a smoking cessation program, well, I never quit smoking but my doctors (as well as my family and friends) are quite amazed at the effect this little cocktail has on my emotional state!   I cannot stress enough the importance of telling the truth to ourselves and our physicians about the emotional effect this medication has on us.  Our egos (at least MY ego) tell us that we can "tough it out" and think our way through the obvious CHEMICAL changes that result from taking this medication.  That is absolute bunk!   There are quality of life issues that we must address and put our egos in our pockets.  While, our egos like the idea of not needing any help, we have to examine the QUALITY of our lives while we are "doing it alone", I think what will be found is a significantly decreased QUALITY of life.   We must seek help with these issues.  One thing that really impacts emotionally is sleep deprivation, for that I took Ambien in doses varying from 10 mg. to 25 mg. per night.

I have been able to continue working through this round of medication, the first time I was unable to the last two months or so.  I think that is primarily due my starting my own business and I am now able to set my own hours and work at my own pace.  

June, 2000 
I am PCR negative (again!)  HOORAY!! Now, I have to wait for three months to see if it "takes"!

June to August, 2000
  Due to the chemical changes that accompany coming off of this medicine and some personal issues this two month period was pretty awful.  Several factors played a part in this, the changes that result in coming off the medication, a miscommunication with my psychiatrist and my therapist leaving the clinic and having to get a new one.  When I first stopped taking the combo my psychiatrist told me to reduce my Remeron down to 45 mg. and my Wellbutrin to 150 mg.  The result of this, along with my personal issues and being between therapists was remarkable self pity, reduced self worth and paranoia.  When I went back to my psychiatrist in July, I minimized what was happening to me so my medication was not changed.  It was in August that during a discussion with my wife that she realized that my Wellbutrin had been decreased and recognized that the dose  I was taking was not the accepted therapeutic level for that medication.  It was also during August that I located and began seeing my new therapist.  The lesson to be learned from this is that we must TELL THE TRUTH to our physicians and the other professionals with whom we deal .  We mustn't minimize what is happening to us.  Don't be afraid to tell your doc you think that something is wrong.  We have to be responsible consumers of the medical community.  Remember, we know our bodies and minds best and we mustn't be reluctant to speak frankly with these professionals.

September, 2000 
The virus is back again!! I am absolutely devastated!  Although, I must admit I thought it might be, I just felt different.  The hepdoc says the combo AGAIN, this time for 12 to 18 months!!!!!!!!!!!!!!! I couldn't make the decision to do it a third time alone, I had to have the help of my newly acquired therapist, my sponsor, my wife and my best friend.  In my mind (for just a little while, mind you) it seemed like a good idea to gamble that I would die of something else, just in the next few years, and that the HCV would never have time to kill me, so it would be o.k. not to take the combo again!!!!  It was explained to me, quite clearly I might add, by a number of people that this not only didn't make any sense it was just plain NUTS!!!!! Needless to say, I am on the combo again, with the same side effects as before and the same remedies.  I am told that this time I have been more "compliant" about increasing and adding various medications to maintain my quality of life.  It seems this time that the side effects, while they are the same, aren't as severe as previously.  It may be because I have been more willing to become "proactive"  with both medication and nutritional supplements or it has also been suggested that the sides seem to decrease in severity with each "round" of the combo. I am continuing to work daily and maintain a reasonable degree of normalcy in my life. 

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