I more than likely contracted Hepatitis C during a period in my twenties, when I experimented with IV drug use. This was not uncommon in the ‘70’s. After a few years of experimenting with many drugs and drinking, I became straight and sober in 1980. I became a nurse, working hard to overcome the previous adversity in my life, I married a man recovering from alcoholism, started a career as a nurse, worked hard to become a pillar in the community.

I discovered I had Hepatitis C shortly before my 50th birthday. For years I had suffered with depression, chronic fatigue, joint and muscle pain, and various other symptoms. I also had elevated liver function tests for years. Being a female and treated by a western male doctor, my symptoms were mainly overlooked as being psychological or irrelevant. I was told to lose weight, get more exercise, whatever quick and easy answer popped into the doctor’s head. I was never sent to any specialists nor did I have any additional tests. Being on nonsteroidal anti-inflammatory medications was my doctor’s reason for my persistently elevated liver function tests. Eventually, he decided to stop all medications, all pain meds, anti-inflammatories, and antidepressants. At that time, I realized I needed to change doctors, to hopefully find one that would look into my symptoms and find a cause, then hopefully a treatment plan that would work.
When I switched doctors, my new doctor quickly realized that something was wrong.

Not only did I have elevated liver function tests, but a variety of other abnormal lab tests as well. One of these was an elevated albumin/globulin ration, commonly referred to A/G ratio. This doctor explained that this indicated either an autoimmune problem or a chronic infection. More blood studies were done. I had several abnormal antibody levels, including a positive rheumatoid arthritis factor. I also had an elevated spike in my serum protein electrophroesis test. One of my globulin levels was elevated. This can occur with some forms of cancer or just be a finding that may or may not have later significance. I was referred to a rheumatologist. My new primary physician felt certain that I had some sort of autoimmune disease, such as lupus or vasculitis.
One of the tests that the rheumatologist recommended doing was hepatitis antibody testing. This test came out positive. Still, it was unclear if it was a past exposure, another false positive antibody result, or if I truly had a chronic infection. My primary physician knew little about hepatitis C, he only had seen one case of it in the small town that I live in.

When I went to the rheumatologist, the specialist had received further test results. My viral load was 400,000 copies, low but enough to be considered an active chronic infection. He recommended that I see a GI specialist.

At first I was in shock. I shared this information with my husband. He was really understanding and supportive. Eventually, I told my daughter, who is also a nurse. She was also supportive. I told a few friends but no one else.

After the shock wore off, I felt as if my very distant past was returning to haunt me. All of the shame and negative feelings returned. This was the most difficult part for me to deal with.

Eventually, I saw the GI specialist’s physician assistant. When asking me about risk factors, she only got as far as IV drug use. When I answered yes, she stopped asking questions. Although that is a distinct possibility, it is also possible that I contracted HCV from a needle stick or through contact with blood during my work as a nurse. I felt the stigma of my past.

Further bloodwork revealed I had a rare genotype in this country, 4A. I was scheduled for a biopsy. I was anxious before my biopsy. It was done using a CT scan for guidance and I received conscious sedation after the procedure. My biopsy showed stage 1 inflammation, grade 0 fibrosis. She recommended that I repeat the biopsy in 5 years, and just watch and wait.

I decided to see another specialist for a second opinion. This doctor told me more about extra-hepatic symptoms and the probability of symptom relief if I were to undergo combo therapy. I decided to embark on a 12 week trial, if I did NOT respond adequately, my plan was to stop treatment. I really felt that I needed to do something for the following reasons, the symptoms that I was experiencing, my age, the possibility of having a positive response with a low viral load and little damage, the possible change status of my health insurance due to high premiums being paid by my employer, and the fact that I still felt miserable. I also felt trapped in a job that I did not like with no options open to me due to my health issues.

I made this decision after doing hours and hours of research. Being in the medical profession, I was only open minded to reading research conducted by “real” medical institutions. I was fearful of what is considered alternative medicine.

Four days after my first injection of interferon, I woke in the middle of the night with acute vertigo. The room was spinning. I could not walk unassisted. This was to be the first of my severe side effects of treatment. I postponed the second dose of interferon, saw a hearing specialist and was eventually taken off treatment for a month due vestibular damage and hearing loss. I was able to restart, although I was warned that if the symptoms resumed, I may have to stop treatment until something new came at a later date.

The remainder of the treatment was not easy. I had continuous tinnitus, frequent dizzy spells, was nauseous the entire time, required narcotics for pain control, slept poorly and sporadically, and was severely depressed. I required antidepressant increase and saw a psychologist routinely. At 12 weeks, when my viral load was negative, instead of feeling joy, I was disappointed. I was secretly hoping that I could just stop. By that time, I had developed hemolytic anemia, was receiving epogen shots weekly and was requiring frequent transfusions. At 24 weeks, my viral load was once again negative. Side effect persisted. I could barely walk a flight of stairs. Many days were spent in bed. My memory failed. I was unable to concentrate long enough to read a novel. I was able to work part time. I was not very productive in my work but I was supported by some wonderful people, who helped me every step of the way. Several years earlier, I had left the field of nursing after returning to school and getting a degree in the computer science field. I had a desk job, that required very little walking.

I got active in an online support community, hcvannonyous.com – I originally saw a posting from someone having similar symptoms with vertigo. This was a place where I could relate. I kept visiting and asking questions. I received such unbelievable support and grew to know wonderful people. I have also opened my mind to the field of alternative medicine. I started taking some supplements, but was forced to stop after developing an ulcer. Hopefully, I will be able to restart at a later date.

Somehow, through all of this, my parents had no idea that I was sick or that I was on treatment. It was important to me that they not know. I felt that I had given them enough heartache earlier in my life and I must protect them from this. I was able to manage my injections around their visits and maintain a semblance of normalcy during their visits.
It is now almost 6 months since finishing combo treatment. My post treatment test was still negative. I am waiting for the 6 month test. I have a 50% chance of remaining undetectable.

I wish I could say that I feel wonderful and that all of my symptoms have resolved. After being diagnosed with HCV, all of my symptoms were attributed to that disease. The next cause of blame was the interferon treatment. I was told that I would just have to learn to live with pain. I found that truly unacceptable. I have since seen a pain specialist, and lo and behold, I have arthritis in my neck that is causing nerve pain. I have had one procedure and am scheduled for another procedure shortly. My problems with abdominal pain also started after stopping interferon. So did some symptoms of hypomania. I was on much too high of a dose of effexor once I was finished with treatment. But no one looked at that. I am still often forgetful and irritable. I try to take my life one day at a time. It is difficult. I cannot say that combo treatment was the answer for me. Perhaps with time, I will not feel this way, but for now, I do.

What is next for me? No more conventional meds, that is a given. I will try to handle stress better, eat better, exercise, and reinstitue milk thistle in my regime. I have lost faith in many aspects of modern medicine. I do not blame the medical community. I did treatment of my own free will. I am merely saddened by my experiences.