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Should I Treat for Hep C?

I recently had a conversation in order to address this very question. Some people are unsure and are looking for opinions on whether or not they should treat their hepatitis C.

To treat or not to treat?

I can not and would not ever tell someone what they should or shouldn’t do. And even when asked, I am in no position to tell others what their best decision should be. There are a few reasons, and I will cover that later, but in this case they were doing what I would see as due diligence in seeking as much information as they could before taking what some people would see as a big leap. Most people would see treatment and seeking a cure as the next logical step after being diagnosed, but this is not true for everyone. I know some people may read this and wonder why. But I suspect that it is something most of us have considered at some point.

Some of us have the benefit of past experience and understanding, but if you are new to hep C or are someone with few, if any, symptoms you may think differently about treatment. I respect the decisions of others in this matter, and as I said, it is not something I want to push on to any person. We can discuss facts (as we see them) and we can discuss our own personal lived experience if we have it, and even broadly the experience of others. But it is not our place to convince others of one path or another.

Making informed decisions

The importance of people making informed decisions is a topic which is embraced by most of us, but it may not be as simple and practical in every instance. We all have varying levels of interest in medical knowledge and even as it relates to our own health. This may be what you think of as being counter-intuitive, but again we all have different perspectives and levels of interest despite how important a decision it is potentially.

Some of us will resign any decision making to our doctor or care provider. If that sounds alien or strange to you, it is not something most of us would choose, but some do and we need to respect their choice and decisions if they are adults who are in a position to make their own choices.

Finding trustworthy information

Some people will have great distrust of medical systems or drug makers and have preconceived ideas about the motivation of others.

This is generally thought of as a right, to believe what we want. Even if most people would suggest we are wrong to believe such things, how do we help others in a reasoned and respectful way? This can be challenging when rigid beliefs lead to uninformed decisions. How we challenge beliefs that have no basis in science is to present the facts as we know them in a respectful way so that better informed decisions are made. If there is no willingness to listen, there is a reasonable path of action we can advance other to try and maintain a dialogue that helps to inform.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HepatitisC.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • Daryl Luster author
    9 months ago

    jaw444
    Your story is not entirely unfamiliar to me, as I have heard and experienced some of the same myself. Your decisions are like everyone else’s-your’s to make. I can see that you have considered we;; all of the potential risks and benefits and it is never my role to tell anyone what is right for them. You are right about many things and I appreciate you sharing them here. All the very best going forward.

  • jaw444
    9 months ago

    I am 69 now i’m someone who first experienced HCV symptoms when i was 27, in 1976, September. when the “virusy” feeling i had didn’t go away after a couple of weeks and it was impairing my ability to work (i was a community college instructor and an academic, preparing to enter a PhD program and taking an intro to statistics class as a prerequisite), i felt like i was coming down with the flu but i never did. i had weak legs and what i started calling “fog brain” because i didn’t know what else to call it, it seemed like there was a big fog in my head behind my forehead and i couldn’t think, i couldn’t learn, i didn’t understand intro to statistics, i couldn’t lecture to my class.

    i went to student health at the university where i was taking statistics. The doctor looked me over, i don’t remember any blood tests being done, he said there was nothing physically wrong with me and he said i was very anxious and needed to see a psychiatrist for that, and he referred me to the mental health department where i saw a psychiatrist. Shrink said i had depression, he said depression could make you feel like you have the flu and can make your brain feel foggy. When i used the term ‘fog brain,’ he said “oh, that’s a really great word for it, i’m going to tell my other patients.” i was feeling down because i knew i was sick but apparently no one could help make it better. I stopped going into work, i dropped out of a seminar i was auditing that i had been really enjoying.

    After about the second session with the psychiatrist, my symptoms went away and i felt fine and i got an A on a statistics test. So, i thought they must be right, seeing the shrink made my symptoms go away. OK. So that was the beginning of a very long odyssey, it was 17 years before i figured out from reading the merck manual, a 3000 page medical book, that the most likely guess for what i had, after many other guesses of cancers, strokes, encephalitis, AIDS, was some kind of hepatitis, not B but some kind they called nonspecific or non A non B, these were not happy times. they were scary times. figuring out it was some kind of hepatitis was not reassuring, i saw that i could die of cirrhosis or liver cancer, and still, most doctors were dismissive, condescending, seeing my concerns as proof that my problems were mental, and i came to believe them yet feeling sick would not go away, it was episodic, i didn’t feel sick all the time, but the episodes were frequent. Somewhere during those years a doctor told me my lab work showed elevated liver function tests, but he quickly added “that’s normal for you, it doesn’t mean there’s anything wrong with you. you’re fine.” I heard that so many times from so many doctors, “that’s normal for you, different labs have different criteria,” while i didn’t think they would lie to me, i guessed they knew what they were talking about, i couldn’t get rid of the fear that i was dying of something and because they didn’t take it seriously, by the time they found signs of it, it would be too late to save me. i came to a point where i didn’t think i’d live to be 45 and i would get sicker and sicker, and i was gettin sicker and sicker, as the years went by, more symptoms developed. you name it, all those “nonspecific” symptoms, but why?? doctors would check me out with the usual blood tests, everything else was normal, just ALT and AST were off. but finally other things got abnormal, low red blood cells, high triglycerides, low platelets, i think. hard to remember, positive RA factor, sign of inflammation in the body though that the doctor who did that test didn’t think it was important. i think i still have all those blood tests, i kept copies, i was the only detective on the case.

    Then, in around 1990 or 1991, i had a more respectful doctor who told me he didn’t know what i had but he believed that i had something His first guess was irritable bowel syndrome, i think because i was constipated. i knew it wasn’t that. maybe within the first year or so of seeing him, he did a hepatitis antibody test, he said there was a new hepatitis antibody test, hepatitis C, that recently became available and i tested positive for that. but he quickly said “that’s evidence of old hepatitis, you don’t have hepatitis now, it doesn’t explain your abnormal liver tests or symptoms. but by then, i’d already decided of all the diagnoses in the 3000 page merck manual the one that explained what i had the best was the one that was called something like “nonspecific hepatitis” and “nonA-nonB.”

    So, i just let him think what he thought, nothing i could do about that, but i knew now what was wrong with me, not for certain but i was closing in on it.

    I lived in a building that had a health foods store on the first floor. i had never gotten into holistic health, i didn’t know anything about it. All i ever knew from childhood on was that if you’re sick, you go to a doctor, and they know what’s wrong and they make you well. I at least had a doctor who was respectful, and doctors i had before him never did this new hepatitis C antibody test on me, so he was a better doctor than them.

    One night i was in the health foods store where i conveniently shopped, i was upstairs in the cosmetics section and i started looking at their books, lots of books for sale about health and healing, i was casually looking through a book when i saw the word ‘liver.’ i read what they said, i looked at other books, they all said a lot about the liver. Wow. they were really interested in the liver, unlike my doctors, none of them showed any interest in my liver or abnormal tests, and even the best didn’t seem to know anything about the liver, reading the merck manual, not a lot was known.

    So i bought a couple of health books. it was uplifting that there were people who were into knowledge about the liver, even ancient knowledge , and they recommended things like liver cleanses and an herb called milk thistle. By then i had been having liver pains. of course all the doctors said ‘the liver has no nerves, it can’t have pain.’ ok, but the pains i had were right where the liver is so, that’s what i have to live with.

    i tried milk thistle and it made the liver pains worse so i stopped that. But i started trying things in the health books, and at some point changed my diet to vegan. i did feel better, yet the episodes of sickness continued. they were less frequent and less strong, they didn’t last as long, but they kept coming back like always.

    i started wishing i could afford to go to one of these holistic healer type people, someone who knows a lot and has experience treating people, So much in all those books about how the liver is at the root of just about all illness, that was weird, doctors had no interest in the liver, but these holistic people all thought the liver was the most important organ in the body and if you take good care of it, you will feel better, you’ll feel good.

    this was uplifting for me, it gave me hope, compared to medicine having nothing to help me with. it gave me things to try. that’s so much better than hopeless, even if it turned out i spent my money on nothing, after all those years of nothing to try, just reading those scary diagnoses in the merck manual to try to help the doctors who wouldn’t have time to read the merck manual looking for my symptoms.

    So life started getting better. In the Merck manual it said that for the nonspecific kind of hepatitis, a new medication was being tried, interferon, i knew what that was, i’d seen it while reading cancer diagnoses. but it said that the medication has side effects that include “flu-like symptoms” and some people get so depressed on it, they kill themselves.

    By that time, i had changed career goals, had gotten a graduate degree in psych, i had a really intense job as a social worker in public child welfare and i was a single parent with a 9 year old kid, and i could not fit flu symptoms into my life, without my job, even on disability, it wouldln’t cover living expenses. and the merck manual said it only showed a therapeutic result in 1/3 of the people. The test they had then for therapeutic result was just the ALT. they didn’t have the viral load PCR yet then.

    i started experimented going to holistic people, first i went to a chinese medicine doctor who treated with herbs, it was in a traditional way, not capsules or pills, it was a prescription she wrote in Chinese and i took it to an herb store and they got all these different herbs and put them loose in a bag and i boiled them on the stove and drank them 5 times a day. i was feeling a better, and my next LFT test had normal LFTs for the first time ever. mine were never very high, but normal was really uplifting, i was happy, kept going and doing the herbs. the next time i got blood tests about a month later, normal again, wow.

    Then, i got offered a new rent control apartment that was awesome, from our one bedroom to a 2 bedroom, lots of moving expenses, higher rent, i couldn’t afford to keep going to my chinese doctor and i stopped. my LFTs went back like before. I kept trying different things, the Chinese doctor was a pretty long drive in traffic to get to, i tried several different things, plus still buying herbs and supplements on my own, and for sure i was feeling better than the year before as time went on, but it was depressing that the symptoms would always come back, i wanted to be free of it so bad, i was afraid of liver cancer.

    Then, by luck, i found a unique nutritionist her name was Eileen Poole, she died in 2014. i went to her for 20 years, just occasionally for an update, i no longer was sick at all, from the time i started following her individualized suggestions and advice, i came to feel not only better but awesome, so much energy, no more colds and flu, it wasn’t because of anything i was ingesting. it was because my body had been cleansed of some kind of toxic load accumulated over a life time that was hard on the immune system, cleansed by eating really simple foods, that wasnt easy but the reward was well worth it. anyway, that’s my theory of what it all felt like.

    it was amazing to me, i never expected that. i just stayed with it, the diet was simple but i was really strict on myself, i wasn’t gonna go back into prison. it included meat, i ate organic stuff, it did not include things we think are healthy, no carrots, no potatoes, very little fruit, no chicken, no sugar, no salt, no caffeine, and many more, every body’s diet was different. she worked on intuition, purely. there’s articles about her on the web.

    So, i did that strictly for about 10 years, and about 10 or 12 years ago, i gradually stopped going off the strictness. For a long time, it didn’t make any difference. Eventually i saw a lower energy level, but other than that, the HCV symptoms never came back LFTs were normal but after i went off the diet and ate things i knew were going in the wrong direction, eventually, i did have a mildly elevated ALT, AST was always normal.
    This went on for a few years. Then, after
    I had a benign tumor removed from my
    pancreas, LFTs ar both always normal again. I think maybe the tumor aggravated the liver.
    it was right next to the liver.

    Back in the early mid 90s, gradually, doctors came to believe in hep C as an illness, and when that happened, my doctor referred me to a “liver specialist” who was just a regular GI doctor. He told me “we have a treatment,” which was interferon, which i already probably knew more about than he did. i told him i couldn’t take it because of my job, you had to take it for 6 months or a year, that was before ribavirin, “the combo.” i told him i had been doing alternative health stuff an that i was actually feeling much better. His face got dark and kind of angry, he started threatening me, i’ll never forget , it was chilling, he said “You don’t want to end up with liver failure where you turn green and end up in the hospital to die, i’ve seen patients, their color is green!!” i knew what he wasn’t saying, he was implying otherwise, that interferon was still experimental, they were just learning about it, they didn’t know it worked long term, it only “worked” on a minority of patients. i did not like the way he tried to manipulate me with those fear tactics. Treat me like an adult or i’m out of here, i can’t respect a disrespectful person. i had been through a lot and i wasn’t going to give myself new symptoms and disabled feelings by taking a medication that hurt a lot of the people who took it, without any positive likelihood of positive results.

    in 1995 i got my first internet and i joined a discussion mail list called HPLV-L, something like that and it was people with chronic hepatitis, of any kind, but most had hepatitis C and most of them were on interferon or trying to find out about it. i don’t think i had had my first viral load test yet then, viral load was a new test in the earlier 90s. people on treatment had occasional viral load tests to see if the virus was going down.

    i got my first viral load test, i had to ask for it, it wasn’t offered. i had the impression it might be expensive. The result was 521,000. By then i had learned enough about it, having internet, that i considered that not too bad. By that time i was pretty asymptomatic, really feeling good and happy. i started only seeing doctors rarely instead of like before, so many doctor visits, so many blood tests. My LFTs stayed normal. I had a viral load test every two years and each time the result was lower than the time before, it went to something like 426,000 and then 200,XXX, and then the last two times it was in the 70,000s. While i was assured that viral load levels don’t mean anything, it’s just coincidence, i was happy. Better than going up.

    People on the mail list started taking the combo, people were really sick from the meds. A few people had good results and felt better but people who were on there, a lot of them were there because they weren’t doing good. Some some people were on transplant lists. A few had had transplants, omg, what a harrowing experience that was. Amazing stories. They said they felt better with their new livers, except for some really intense steroid related experiences.

    i told my story, there were some others who used holistic stuff. but some of the people who were into unquestioned taking of the meds were kind of hostile, one lady in particular who had cirrhosis and was really sick kept taking meds, the other thing i wasn’t wanting was the biopsy, i had read up on that, i saw no need for a biopsy since i had no intention of taking the medication. and i had no symptoms. And before that, i used to have lots of symptoms and red palms and spider veins and sharp pains in my elbows and liver pain and i was studying up on cryoglobulinemia, but now, it was over. i had become healthy for the first time in so long, and it was the only life i had, my 30s was dominated by the unknown undiagnosable illness they said was psychological. that woman said to me when i said i wasn’t going to get biopsy, that i was a bad mother, i had a daughter and i should think of her. i left that alone, she was not in good shape.

    eventually i drifted away from that, but while i was on it, i learned a lot about HCV. One of the most important things i learned was about the state of research at that time. The things that were most importantbto me were, one, contrary to what the scary GI doctor had told me, it wasn’t very contagious, you could share nail clippers, i read about a big study which found couples that had lived together with it for years and shared toothbrushes, etc, one spouse had it and the other didn’t, and other family members didn’t have it. not so contagious, blood sharing is needed. good to know.

    The other thing was, they were finding that most people with HCV positive blood test would grow old and die of something else. that was such wonderful news. Most people who had it would never become symptomatic but most who included symptomatic people would not die from it. it was a long time study, following a lot of people for a long time, i dont’ think it was the same as the one about contagion. These were uplifting things to learn.

    i had not found that regular doctors know that stuff, or it’s not important to them. None whoever talked to me about hepatitis C ever told me those statistics.

    It’s a good thing they help people who need it and who can benefit, but treating people who don’t need it and are not likely to benefit or are at unnecessary risk of serious adverse reactions, it bothers me that this is how most doctors i encounter think, not all of them, but I’m surprised at the way 2 doctors i’ve seen in the past year, when i tell them i have HCV but i’m asymptomatic, they really push me to take harvoni . i’m sure they would take it immediately if they were HCV positive, they really do believe in it, but to me it seems so unjustifiably overgeneralized, one size fits all recommendation for everybody.

    Because they don’t ask, they don’t know that i used to be very symptomatic and had elevated liver tests and increasing symptoms and after i got on a cleansing sort of diet and did other lifestyle things, all of that changed.

    There are people who are HCV positive and don’t know it, no idea, they are asymptomatic, and they get labs done and it shows they have positive antibody for HCV and doctor does a viral load test and if they’re positive, the doctor says “good news, we have a treatment for that!” First they’ll probably say, “well, it can be a serious disease, a silent killer, while you’re thinking you’re fine it could be eating away at your liver, causing cirrhosis and liver cancer”…but then “good news, there’s a treatment.” most people, including me under those conditions, would feel such relief, oh no, i might die, cancer???..oh, but it can be cured! yay.

    But they don’t tell you about the replicated research showing most people will not get sick from it at all, and most won’t die from it, and they deny or minimize or play down adverse effects and risks of the treatment. Sure, from their perspective, Harvoni, so far, is a lot better than Interferon, so it can be more happily prescribed, but this is not informed consent. i’m not saying the doctors are consciously dishonest. i think they believe what they are saying, for sure, they are well intentioned and when they have a medication to use, they are happy. i’ve learned it’s in my best interests to learn all i can and to proceed cautiously.

    The last doctor who recommended Havoni was the same internist i had gone to in the 90s that did the first HCV antibody test and who respected me, i hadn’t seen him since the mid 90s when i got healthy. i went to him last December for a rib cartilage injury that happened during a surgery. He asked if i had tried treatment for the HCV, i said no. He said “you know, they have good treatments now,.” i said yes, i know, harvoni and some others. He said he wanted to get blood work. and he was going to do a Fibroscan test, i was glad to do that, i had been meaning to ask a doctor to order a test for that, finally they have something to estimate fibrosis that doesn’t have the risks and shortcomings of biopsies. but i would always forget, i never think about Hep c. i used to be obsessed with it, because i had to be. i got on this forum when looking for the research on longevity and risk of dying from it after being pressured to get drug treatment.

    Anyway, my Fibroscan result was 1.0, and i learned from reading up that the results are not that clear, what they mean, especially on the lower and higher ends i think, but on the print out it said that 0.0 to 1.0 was normal, but what that meant was unclear. Anyway, i was glad it showed low fibrosis score. I’ve had the virus for at least over 40 years and that’s not a lot of fibrosis after that much time, probably. i have no sign of liver inflammation or dysfunction, not since the early mid 90s.

    i got a really rare benign tumor on my pancreas beginning in 2006, though i didn’t know i had it, i had it for 8 years before i learned of it, it was debilitating me but i thought it was purely psychological and i was really frustrated, i was deteriorating at work, i couldn’t handle stress, which was never true of me before, and i was having bad judgment related to avoidance of stress. you can’t do that in the kind of job i had, i had emotional melt downs at work. that wasn’t me, what happened to me??? part of the bad judgment and avoidance of stress, as well as having become accustomed to being healthy, was that i didn’t go to a doctor or have a blood test for 5 years. i retired early from my job because i was scared my bad judgment might get me fired and i would lose my pension and health insurance and everything.

    about a year after i retired, i got worse symptoms, i got up in the morning and fell on the way to the bathroom, i didn’t have any coordination, it wasn’t balance, it was coordination. with great difficulty i made some instant oatmeal and sat and ate it with my lap top. i could not type, i could only type one key at a time. but while i sat there eating, the symptoms went away, fast, i could type, and i thought, “it must have something to do with eating.”

    Finally i went in and got labs. my doctor emailed me at home the next day, never happened before, he said ‘i got your lab results and i want to ask how you’re feeling.” i did not feel great but pretty normal, so i said “i feel normal.” i was going in to the doctor the next day to get my sleeping meds so i got the lab print out, i didn’t see anything but my ALT was mildly elevated. but the PA showed me what the doctor was concerned about was that my glucose was 32. the lab wrote CRITICAL next to it. The low end of normal was 65. But when i told my doctor i felt normal, in the email, he just assumed it was a lab error. After all, a person with glucose that low probably wouldn’t go walking into a lab or anywhere else.

    I had the second episode that weekend, a month after the first, worse, i woke falling out of bed and couldn’t get up and had urine on my nightgown. i tried to drink some water from a sport top bottle and squirted it all over my chest. i couldn’t enunciate words. i thought “i need to eat something.” i drug myself on the floor to the frigerator and got apiece of plain rye bread. i put a bite in my mouth, sitting on the floor, as the juices from that bite went down my throat, the symptoms went away. pretty weird.

    When i told doctors, they said it didn’t make sense, i saw an endocrinologist and he spent at least an hour with me, i had been doing home glucose testing and every morning it was super low, sometimes lower than 20, the lowest part of the range, but i felt ok, i took my dog for a half hour walk every morning, i wasn’t in a hurry to eat breakfast. the doctor said that it didn’t make sense. he knew i had the HCV virus so he said “I think it’s your liver. i dont’ think it’s anything endocrinological.” I thought to myself, “another doctor who doesn’t know anything about the liver but thinks he does. Because of the mail list i’d known a lot of people with HCV and nobody ever described anything like what i was having, including critically low glucose. but he apparently didn’t know a lot of people with HCV.

    then i turned 65 and got Medicare which meant, with my new supplemental plan, Anthem ppo, i could go to any doctor i wanted, so i did what that guy said, he said see a liver doctor (don’t they know, there are no liver doctors, they’re GI doctors. some have special experience in hepatology. anyway, so, then i went to a recommended GI doctor and i told him what the other guy said and brought my lab results and he said “i’m surprised that nobody tested your insulin to rule out insulinoma.”

    i had read about insulinoma before, when reading about causes of hypoglycemia, which i extremely had, it’s a very rare tumor that causes hypoglycemia, and seizure and brain damage, all of which i probably have had. He did a simple blood test and it showed that i had that tumor. i know i had it for 8 years because of all those blood tests i got over the years when i wanted to keep checking my LFTs, and it showed that until 2006 my glucose was always normal, and then suddenly, it was 33 and three other tests i had were below normal, and the lab apparently thought the 33 was so unlikely that they printed on the test “cells in the presence of contamination, results are not reliable,” and truly, people with glucose that low would usually not be up walking around, people with glucose a lot higher than that call paramedics and go unconscious. So i understand they didn’t think it meant anything, it was up to the doctor to follow up. i was so used to being super healthy and still seemed to be so i didn’t pay attention, i had the poor judgement from the effects of no glucose in my brain anyway.

    The good news is it’s curable by removal of the tumor, 90+% of them are benign and don’t come back. no other treatment for it. The surgeon who removed it, with great difficulty because it’s only 1cm and it was on a really vulnerable hard to access part part of the pancreas, but he was really experienced doing a lot of the surgeries to remove these rare things, he was also a liver transplant surgeon, and he knew livers very well. After the surgery, when he had been all around my liver in there (it was an open surgery because of how hard it was for him to find it), i asked him at the post op visit, that in view of chronic hep C, how did my liver look? i will always remember a smile coming over his face as he remembered that i had hep c virus, “Your liver was FINE.”

    Yeah. i knew that. just checking. And again, glad i had the experiences i had which brought me to a place where, when pressured, to take interferon, i could say no, in the face of an expert doctor telling me it was the right thing, otherwise i would die. As of now, so far, Harvoni is so much better. Personally, for me, it hasn’t been around long enough to know about long term risks, but i’m glad that people these days who choose medical treatment have much better options than when i first knew i had HCV.
    i can’t see myself ever taking it, i will stay tuned and see what newer treatments they come up with, but no treatment that kills a virus is without risk to the body, so i will weigh the risks and do what makes the most sense to me, given my experience, like everybody else.

  • Daryl Luster author
    9 months ago

    jaw444
    Your story is not entirely unfamiliar to me, as I have heard and experienced some of the same myself. Your decisions are like everyone else’s-your’s to make. I can see that you have considered we;; all of the potential risks and benefits and it is never my role to tell anyone what is right for them. You are right about many things and I appreciate you sharing them here. All the very best going forward.
    reply

  • Lauren Tucker moderator
    9 months ago

    jaw444- Would love for you to share this in our stories section. If you create a blank story here https://hepatitisc.net/stories/ and submit. I can copy and paste this comment and publish your story. Thanks so much for sharing. We are glad to have you here. Best, Lauren (HepaitisC.net Team)

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