Just Received Lab Results - Comments Welcome (and needed)

[LindyK]

Profile:

Female
Age 51
Dx with Fibromyalgia in March 2005 (Symptomatic with fatigue, pain, sleep disurbance, lowered cognitive functioning since November 2004)

Was out of work last year for 12 weeks due to above symptoms and am currently out again since Oct 6 for 12 weeks - symptoms above have increased plus nausea, lack of appetite and weight loss (40 lbs) since May.

Learned of Hep C Infection after donating blood in August, 2006.

First visit with Infectious Disease Specialist October 23, 2006.
Following are the results of the Labs done that day:

Protein, Total, Serum    7.8
Albumin, Serum           4.4
Bilirubin, Total         0.5
Bilirubin, Direct        0.16
Alkaline Phosphatase, S   78
AST                       33
ALT                       35

Genotype 3
V/L 1,930,000

When I saw the specialist he told me that if I was Genotype 1a or 1b he would order a liver bx (I took this to mean that if it was any other type there would be no bx).

He also said if V/L was more than 2,000,000 - would treat, if less than 2,000,000 would not treat.  The V/L is very close to 2,000,000 so I don't know how he will interpret it.

I have been so prepared to come back as Geno 1a or 1b that I haven't even looked at Geno 3 so I'm off to do some research.  My next appt is November 20th.

Any information you all have would be very helpful!

[Eisbein]

Hopefully you stick around for a day or two.
You just might be the right person to ask.

We have several members here, myself included, who at some point during tx became PCR pos, after having been neg at prior PCR's.
I got a pos PCR at 20/IU using LabCorps HCV Quantasure Plus by Taqman (real time PCR technology, measuring down to 10 I/U.

I spoke to one of their big heads, don't think it's a good idea to mention names, but it starts with an S and ends n, and he insisted, that false pos are virtually impossible with this methodology.
But my doctor, who has devoted his life tx HepC patients (4000), insists that he has seen false pos with every lab, even the best.

Could you please comment. Is this contamination of the equipment?
On second thought this may NOT be such a good idea to ask you, an insider,LOL.


Anyway, after that questionable pos result I started using NGI QuantaSure, and occasionally Heptimax.

I am 9 month SVR, and not sure which qualitative test to pick from NGI's menu. My doctor also lets me pick my own.

Ina

[jmjm530]

While you're here, I'd love to get your take on Mitchel Shiffman's slide presentation "Hepatitis C: Epidemiology, Diagnosis and Treatment" at the Clinical Care Options website. Specifically starting at slide #24 where he talks about the inherent variablity of quantitative HCV RNA assays.

If I understand him correctly, these assays can vary up to a log (1/2 log in either direction)for no other reason than testing variablity. Now, at very low numbers such as 10 IU/ml, a half log variation isn't very much, but let's say someone has a viral load of 600,000 IU/ml. A half log variance could mean their viral load actually is 3,000,000 IU/ml, or conversly much lower.

This type of variablity seems to have implications in determing pre-tx viral load and its implications. So if this variablity exists, how do so many studies seem to agree that pre-treatment viral load is a good predictor of response given this testing variablity? Using the above example again, how can 600,000 IU/ml be a useful cutoff point for low viral load given what appears to be such a variablity? Or does it just statitically work out that way with very large numbers of patients?

Hopefully, this link will take you to the presentation, otherwise you'll have to search under "Shiffman".
http://webcasting.clinicaloptions.com/p41111200/

Thanks again for your expert input.

-- Jim

[jmjm530]

I certainly agree that nothing here should substitute for a treatment doctor who has not only the professional training but access to the patients complete medical records. Even non-treatment related information on the internet is often suspect and wrong. Unfortunately, if you've spent enough time here, you will come to understand that many of the doctors treating this difficult disease are also in need of more updated treatment information and frequently do their patients a disservice.

All we can do here is as you say, send folks back to their doctors with added ammunition which hopefully will add positively to the treatment equation. What both those being treated and what their doctors do with that information is another story. In some cases the best course seems to be to switch doctors but that's only a decision the person treating can make.

What do you tell someone who is a stage 3 or 4 with a three point hemoglobin drop in the first two weeks of treatment who is short of breath and ready to quit? I think suggesting they talk to their doctor about the rescue drug Procrit is a responsible thing to do. You'd be surprised how many doctors don't even use rescue drugs in spite of the recent studies. So what do you tell them when their doctor says he doesn't use them and is going to stop the riba instead? Many of us at this point suggest they consult with another doctor.

On a personal note, I've been to the very best doctors since the early 70's. I'm sure you're familiar with the late Dr. Sheila Sherlock. She reviewed my first biopsy slides. Dr. Sherlock is representative of the doctors I've seen. Still, there's still a lot of guessing even at the top. Dr. Sherlock was wrong on my prognosis -- she said it (called "chronic persistent hep then) would "burn out" in 5-7 years, and it just points out that everything has to be questioned. I think it prudent for everyone here to check and double-check all sources -- what they read here, what they read in other discussion groups, and even what their doctors tell them. I do.

-------
Regarding the scan. I was scanned twice, once during treatment and once five months post. I was never given instructions regarding fasting and frankly can't remember if I ate or didn't before the scan. First scan correlated with a very high stage 2 and the second with a low stage 2. I was also told there was no clinical benefit of scanning more than once a year. This appears different from the protocol a lady poster recently discussed which may or may not be used by your organization. I think she mentioned monthly scans.

I would be interested in your comments on both the fasting and the need for monthly scans. My understanding is that the U.S. trials are going very well and that FDA approval is around the corner, hopefully meaning we will have fibroscan devices more local in the not to distant future. I can certainly understand how useful a non-evasive device like Fibroscan would be to a researcher like yourself experimenting with a soup of different treatments like Alinia. After all, most people don't want a needle stuck into their liver every 6-12 months :)

Thanks for taking time out to participate in these discussions.

-- Jim

[jboyhk]

Are you a believer that in HBV you should keep the virus levels as low as possible even if you have normal ALT/AST and E antigen negative?

My dr here, although treats hundreds of people with HBV, will only change his way of thinking if the recommened protocol is changed. He never wants to be ahead of the curve.

[Hepatitis Researcher]

You are well educated in hepatitis issues.I saw your exchange with kalio1 ( another thoughtful person)   re teatment length, fast response etc and many other comments of yours. You must realize that this forum shows, beyond the friendly compassion that people here have for each other, a sad and strong need to explore and have questions that strictly speaking only their doctor should answer.And the questions are often asked without all the info needed provided. It is a good idea to send them back to their Drs, with some added ammunition.
I focus on the question what can be done for people whose treatment failed and in HBV what is the best treatment in a particular case. In HBV we could help now- but the confusion in the medical community is great ( And worse in the insurance community). Quite an experience at the AASLDs satellite meetings!

Treatment of fibrosis is one important isuue. Here we might be able to slow progression of liver disease even if the virus cannot be eradicated. Difficult because approved therapies are not out yet. What about patients that cannot wait?
I am also interested in the effects of NAFLD on liver fibrosis progression and what we can do for this group to slow or stop fibrosis progression. For this purpose I obtained the very first fibroscan in the US, two years before Eugene got his (and I trained and got certified in Paris for this purpose). Strictly for research, since it is not FDA approved. You have to know how to use and interpret its readings however. Thus it might take a while before FDA approval is given since the original idea was to have the computer evaluate each of the 10-20 elastograms the machine generates.  When you had your Elastometry done were you fasting? Was it done at Dr. As lab in Boston?

[jboyhk]

Thanks for your quick response as I know you are busy.

I currently live in Hong Kong, and have always been worried that the blood gets somehow degraded when its shipped to the US. 2 dr's here insist that is not likely as they get positive results back from many patients.

Yes, I have done the UltraQuant tests the last 3 yrs and have come undetectable in HepC.

Also I just recently got tested for the HepB ultraquant and got undetected <500 cps. (Previously they used the less sensitive tests that can be performed in Hong Kong).

But that genotype test result always bothered me, but it was done back in 1998. Back then the sensitivity of the tests was only <2000.