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Re: tested HCV positive and Dr.'s

Re: tested HCV positive and Dr.'s

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Posted by Scott on August 04, 2000 at 12:09:47:

In Reply to: Re: tested HCV positive and Dr.'s posted by thanbey on August 04, 2000 at 11:03:04:

: : : : Tested positive for this damn virus in June. Additional tests beginning of July for genotype and RNA levels.
: : : : No results yet. The testing lab stated that the results they recieved were "strange" and that they are
: : : : going to retest with the same blood samples. I am taking milk thistle,( 100mg am, 50mg pm) which my
: : : : Doctor (PC) said is OK. I am wondering if this could cause strange readings? Biopsy 7/27, no results yet. My
: : : : PC Doctor wants to handle my case. He stated that "combo therapy" is what I should do. This was stated
: : : : after the positive test showed HCV antibodies. ALT and AST #'s are what started the extended testing.
: : : : Values are 142 & 83, respectively. He also states that it is OK to drink a (1) beer " now and then", i.e.
: : : : every 2-3 weeks. From what I have read, I think I had better go to a specialist. Any opinions, suggestions
: : : : or recommendations. Is anyone aware of clinical trails for PEG in the Portland, Or. area?

: : : I am in Portland, OR. I agree with you that you should see a specialist. We have several fine GI's and hepatoilogists in Portland.

: : : thanbey

: : Thanks for the quick response, got the results of the biopsy and I am at stage 3. Genotype is 2 and the reason the lab did a second series of tests, is that my viral level is the highest they have ever seen. That was told to my wife by our PC doctor while she was in the hospital recovering from a full hysterectomy( she comes home tommorow and is doing fine). He still hasn't spoken to me yet, and when I attemped to get copies of the reports from his office, they where unable to find them!!!!! I have made a appointment with a gastroenterologist, but will have to wait untill Oct due to his schedule. Are you aware of anyone else in the Hillsboro/Beaverton area. My referal is to Dr. Watson, but 2 months seems like along time, considering the comment about the viral level. Thanks in advance for all your help.
: : Scott

: Hi Scott,

: First of all, the viral level is not a great concern. Viral loads fluctuate, as do the ALT and AST (liver enzymes). So the slow moving nature of the disease means that there is no emergency here. You will probably be encouraged to treat right away once you do see a gastro (Oct is not that long in gastro time!)

: This is a decision you will want to look at carefully and plan your life around if you decide to proceed. Know this: you have time to make good decisions and to plan for treatment if that is your decision. There is also more than one treatment choice, and more on the way. You would hardly know that from the information most gastros offer.
: You will want to plan for the worst, then hope for the best. This planning includes your relationship, your famiuly obligations and your career. Few doctors understand how potentially debillitating the side effects of treatment can be. Preparation can make a big difference to people.
: Check out the favorite links page on our website for information on lab results and other issues.

: What you need to do right away is to stop drinking ANY alcohol at all. If you smoke, quit.
: These are good things for anyone with any health problems, but for liver disease it is critical. Alcohol has been associated with accelerated liver damage and smoking has been linked to higher rates of liver cancer for those with HCV.I am aware that doctors, like your PC, sometime recommend that occasional drinking is not harmfull. You have an extrememly high viral load, and while it is not
: indicative of disease state, you should know that alcohol to HCV is like gasoline on a fire. You cannot afford to tempt fate here.

: If you are interested in a clinical trial, OHSU is the place to contact. Try Hugo Rosen's office up there. He does many of the trials. I doubt that you will get in any sooner than with Dr. Watson (I haven't heard of him) but if they have an enrollemnt going on, you just might.

: If you are interested in PEG (Pegasys, Roche) it will be out within the next year. Your profile suggests you could wait for approval. If you refer to Peg Intron (Schering) I do not know what that time line is. It has not shown the promise that the Roche product has and is not a once a week dose. Side effects are about the same.

: Our office is just being painted and we move into them in Portland the last week in August. In the meantime you can contact us directly through email or by telelphone at 1-888-968-HCOP. I will give you our local number when I have it.

: Best wishes for a speedy recovery to your wife.

: thanbey

Thanks again. I am a vet and was wondering if I should be considering the VA hospital here. My insurance is decent, so my concern is the quality of care they deliver. Do they have a good reputation? On another note, I don't drink enough to have ever had a problem, and have not had a drink since being diagnosed in the beginning of July. I quit smoking 3 years ago, so I am ahead on that front. I hope your move from your present location to your new office goes smoothly and doesn't create to much confusion. Take care

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