No Treatment??/

[Rick4444]

I seen the Dr last night.I was told there is no treatment nessesary at the present time due to the low viral load and the accute diagnosis.I am being monitored to see if the virus goes away or it turns to chronic.I know about the persentages and I was told if it goes chronic then I can be treated. Is this OK or should I seek another DR???

[GSDgirl]

university of Pittsburgh is about 5 or 6 hours from Philly.  I think I remember someone else from Philly on here, one of the Rita's?

Denise

[nygirl7]

Rick is a really good guy I've been talking to him off forum too :) He made alot of friends fast it seems! ☺ ☺ ☺

Anyway Rick if you can get to NYC Dr. Jacobson doesnt' take insurance but he is so worth the money that even someone like me who is pretty much dirt broke didn't mind paying it.  He is one of the best in the entire world and he gave me my second opinion and then called my doc (who took my insurance) anad offered to consult with him for free.......you can't beat that.  Then he got on the phone with him right away - believe me my personal GI was totally impressed!

I'll talk to you later I"ve been SWAMPED at work today!!!!!!!!!!!!!!!

[merryBe]

bill said >>>>his ALT was >4000

that would scare me. Second opinion yes duh.

only 15-20% of people will clear this on their own, they tend to be the younger, with more adaptive and robust immune systems.

The window of opportunity someone referrenced is because the viron take up residence to replicate in the liver....the longer you carry the virus, the more set up shop, and the longer and harder it is to treat successfully.  One man I spoke to had a Viral  Loead of 47 million.....why his doc did not treat earlier I do not get. But that means every 1/4 teaspoon of his blood has 47 million viral copies...which means the liver is bursting with virons.
Treating early, helping your immune system to fight the fight, especially if you have insurance or access to a trial makes sense because in most cases the immune system can't keep up, and the virus becomes adaptive to your system making it harder to eradicate as time goes by. I believe high viral load is still considered a major indicator in the predictive outcome of treatment. In otherwords the higher the VL the lower the rate of successful tx....so with waiting you may have a benefit, or a higher risk instead.

My main concern would be the ALT of 4000.....was that right or a typo?
If right, then you have a lot of liver cell death occuring right now and I would get to a good teaching hospital, or an emergency consult with a hepatologist....sometimes they will fit you in for second opinions without the months of waiting, surely your ALT should qualify you for that emergency 2nd opinion.

mb

[oneatenuff]

How about the University of Pittsburgh - that might not be too far away.   I know of two people who treated there and got excellent care and were real pleased with their hepatologist  (some of the best from what I understand.)


Here's a paragraph off their Div of Gastroenterology

"The UPMC Center for Liver Diseases offers a convenient focal point of access to a full range of liver disease treatments. The Center features care by hepatologists, well known for their expertise in liver diseases. The Center coordinates this care with a number of subspecialists, including experts in hepatobiliary and transplant surgery, therapeutic endoscopy, pathology and oncology.

The Center participates in some of the largest clinical trials in the country, thanks to the ability of our specialists and the large patient population. The Center's primary research themes include:

    * The mechanisms of liver disease, including hepatitis C in transplant patients, hepatic inflammation and acute liver failure;
    * Genetics relating to primary biliary cirrhosis and drug metabolism; and
    * Therapies for hepatitis C and B and hepatitis in transplant patients.


http://www.dept-med.pitt.edu/gi/liver.html


Here's a contact / number on that same page.

Division of Gastroenterology, Hepatology and Nutrition
Mezzanine Level, C-Wing-PUH
200 Lothrop Street
Phone: [phone]

Best of luck.

[Bill1954]

Thanks! I got your info and sent it on to Rick; hopefully, he can follow up with these, and take advantage of this.

Jim; good thoughts- I hope he can make some of this work to his advantage--

Bill

[JennyPenny]

Look for a note. I sent you contact info for Rick.

[jmjm530]

I don't know of any great hepatologists in Philly, but a two hour drive to NYC might be worthwhile at least for a consult, assuming he's well enough to travel. Like you say, he appears to be in one of those rare windows of opportunities that most of us miss and you want to take full advantage of that. In NYC he could see Dr. Douglas Dieterich, one of the best in the country.

http://www.mountsinai.org/Find%20A%20Faculty/profile.do?id=0000072500001497131492

[Bill1954]

I’ve been speaking with Rick off-forum a little bit; it seems he might indeed be acute infected with GT-1 HCV. Apparently, he was seen by the local hospital with severe flu-like symptoms including jaundice; additionally, his ALT was >4000. Local GI doc’s didn’t want to see him; he was referred to the ‘dept. of infectious diseases’, and reportedly said they would monitor VL load (currently low at ~100,000) for signs of change, and treat if the disease didn’t self-resolve.

Although he feels comfortable with the level of knowledge his infectious disease doc, I suggested he seek second opinion with a hepatologist to make the best of his opportunity. This is a precious widow, and it may be lost if he doesn’t hook up with the right doctor.

Any additional feedback would be greatly appreciated- including a number for a hepatologist in the Philla, PA area?

Good luck to you Rick; I hope I you don’t mind that I jumped in here; I just wanted to provide a little additional background; often, new people in here misidentify an acute infection. Hopefully, you’ll arrive at a consensus here.
Take care all—

Bill

[bandman54]

unfrickinbelievable!

This is another example of why I get so sick of hearing "listen to  your  doctor, always follow your doctors advice, bla bla!"

My doctors made so many mistakes.
You must educate yourself.
You can not count on your doctor(s).
Scary huh!

And then you have to figure out a way to present that they will accept and not bruise their ego.
A lot of work for patients that already have enough on their minds.

oy!
bandman

[jmjm530]

I second JennyPenny's advice, in fact if I were acute I'd probably try and see at least two hepatologists for a broader opinion base.

I say this because the acute treatment protocols appear to be less codified as per the chronic protocols.

Depending on how close they can pinpoint the time of infection, as well as your viral kinetics, it may or may not be worth waiting a bit to see if you clear naturally. Or, perhaps, if you are very acute two or three injections of interferon may do the job, but we're not doctors here, and what you need is someone with as clinical experience as possible. Therefore the advice to seek out a hepatologist, who are usually found at your larger, teaching hospitals.

Good luck and do keep us in the know going forward.

-- Jim

[JennyPenny]

Seek another doctor. Treating hep C in the acute stages guarantees over a 90% cure rate. Please look for a hepatologist in your area who knows this and will treat you. Once the disease becomes chronic it becomes harder to treat with less chance of cure.