thanbey

"Does it not make sence (sic), to live happily ever after, avoiding alcohol, smoking, eating right, with ZERO ammonts(sic) of the HCV BUGS in your system AFTER treatment,
then (sic) trying to live happily ever after, with millions of the Dragon bugs in your system waiting for your immune system to weaken, and catch ever other virus out there."

NO, it doesn't make sense unless it is proven that it actually makes any difference in morbidity and mortality. It addititonally doesn't make sense if you end up with worse problems than you started with. It does make sense to live this way to avoid progression of liver disease in the absence of treatment and it is a valid choice (and for some, it is their only option)that should be respected. Living this way is a good idea for everyone with hepatitis C whether they treat or not; respond to treatment, or not.

The benefit of the treatment should be greater than the risk of living with long term problems that make you feel worse or increase the damage to your liver. You should have, at least, the assurance that you have improved something, not just the hope that you have, maybe, improved.

I am not saying there is no benefit to the treatments for anyone. I am saying that the risk/benefit must be in favor of the patient and enough information about your own medical history weighed against what the realistic expectations of the current treatments are. It may be that the risk/benefit ratio is in your favor, but we haven't done enough research yet to know whether the same result can be obtained through changes in lifestyle choices. Emerging scientific work suggests that you may realize as much benefit from changes in lifestyle as from the treatment with an early diagnosis or in the absence of progression. This is simply something to consider when making a decision.

There is absolutely NO evidence that a person living with hepatitis C is more susceptible to bacterial infections or their sequellae than anyone without HCV. There is no evidence that your immune system will weaken over time due to HCV or that it is improved after a course of interferon therapy that will help resist infections of any kind.

Those messages are the very ones that scare people into thinking (wrongly) that the HCV virus is deadly to anyone who has it and which causes unnecessary treatment in those who do not, and probably never would, need to be treated and for whom the risks far outweigh any potential benefit. There are diseases that make a person more susceptible to hepatitis C, however. Co-infections and co-morbid conditions can make a huge difference in the outcome one can expect with the treatments, too. But, usually, these preclude treatment, can be made worse or are brought forward by treatment itself.

Can you image being someone diagnosed and told that they cannot be treated due to a contra-indication or co-morbid condition and reading the message that you will surely die or become really sick without treatment? It is simply untrue for the large majority of those with hepatitis c.

I get telephone calls every day from people referred to me from the CDC hotline who think they are going to die because they are 1) inappropriate for interferon treatment or, 2) cannot afford to be treated and are panicked after hearing they will die if they don't get treated. I hear from desperate people pleading for financial assistance to stay alive.

This very morning I spoke to a single mother who was told (by a medical doctor!)that, at stage 3 biopsy, she had only five years to live without treatment. She cannot afford to treat, quit work or bring herself to give up her children for adoption so they will not be too attached to her when she dies. She called absolutely frantic. Meanwhile he said nothing to her about her smoking or alcohol intake.

Shared personal stories are all useful, but in the absence of a complete medical history and thorough assessment, we only have the assumptions of a person "somewhere out there" in cyberland that what they are experiencing is attributable to hepatitis C and not another problem that has not been diagnosed because it wasn't looked into. We also cannot know what was said in the privacy of the medical office that might have been misunderstood.

Good information is available to anyone and you do not have to be a PhD to get it or understand it. In fact, I hear from lots of Phd's asking for information and lots of patients whose doctors who know virtually nothing or just enough to be giving very bad advice to people.

I tell everyone exactly what I am telling everyone here - process the information critically and do research on your own.

You are the one who will gain the benefit or suffer the consequences.

thanbey

...all information is intended for general information and is not an attempt to speak to the specifics of any one person's medical situation or decision...........