Getting into trials

I am 64, in good overall health, recently diagnosed with HCV, genotype 1b, still have pretty good blood markers, and am probably a good patient for drug trials.

I know about the NIH trials website, but it isn't patient-friendly and takes a whole lot of time and trouble going through it and then trying to contact the people doing the trial, maybe for nothing. With hundreds of trials going on, I could spend the next year looking for one.

I'snt there some central trials clearing house for patients, where you can offer yourself and see what trials are interested in you?

[FlGuy]

Not sure if this is the site you're referring to.

www.clinicaltrials.gov

Go to Search and key in criteria like      hepatitis, miami

Based on the inclusion/exclusion criteria listed, you may be able to narrow some of the trials you'll be eligible for.

[mike716]

Thats the site. I don't understand why they make it so difficult to find a trial to get into. After all, they need us as much as we need them. There's gotta be a better way.

[Forseegood]

hi, it's been my experience that clinical trials doesn't always note every  trial  offered everywhere...if I were you, I'd call, or better, go personally if you can... to all the teaching hospitals in your area (after all, I highly doubt that you'd join a trial that isn't in your area, though some do go out of their immediate radius, I had a friend who took flights to San Francisco VA because he didn't like the VA in Los Angeles, said SF was much, much better) to see if they have anything coming up...

the trial coordinators (ask to speak them right off), or nurse practitioners for the hepatologists/gastros *usually* will be forthcoming, at least that's what I've encountered...good luck to you...also, I'd ask for their criterion upon entering a trial, but I've even heard that some docs will let you bend those a little bit too in some instances....though certainly not always....just my take...

[FlGuy]

Depending on where you live and the various facilities that might be in your area it might be helpful to actually be seen at one of the clinical trial hotbeds.  I had a consult at one of those university type settings quite a while ago.  Since that appointment they have called me about my interest in trials on 3 different.  After that consult they decided to list some characteristics and, apparently, they refer back to it every once in a while.

[mike716]

Both sound like good suggestions. I'm going to find out where trials are being done around here in New York City or on Long Island (I live in Queens, NY), and go and talk to someone. Maybe I can get into a local patient database, or at least find out on a face-to-face level what's available in my area.

I'm new to this and it's all a little confusing. Thanks to both of you for your help. If you know of anyone in this forum who's from my area, please let me know.

[hippygem]

Try this link to find trials, its really good
http://clinicaltrials-dev.ifpma.org/no_cache/en/myprotal/index.htm

[hippygem]

Doesnt look like it is going to work, the only other way I can suggest is to go to www.hepcaustralia.com.au and go to the 'Links' section and you will find a link called 'clinical trial portal', click on that and it will take you to it.

[jt57]

If you are in New York, I would call Dr. Ira Jacobsen with the Hepatitis C Center in NY City.  I actually called to make an appointment with him, that is how I found my DR. here in Charlotte.  And I am about to start in a study trial in 4 wks. for naive treatment 1b's.  Maybe they can tell you where you can get in on this in your area.

Jean

[jmjm530]

Forgive me for being presumptuous, but unless there's a lot more to your story you may be putting the trial cart before the horse.

Your first step is to see a liver specialist (hepatologist) for a full evaluation to help you determine whether treatment is the right course for you at the present time, as treatment advances keep getting better every day.  This may include a liver biopsy to determine how much liver damage you have or don't have.

Then, once you have been properly evaluated, and if you decide you want to treat now, then you can look into ongoing trials in the area as an option.

Two excellent liver specialists in your area are Dr. Ira Jacobsen group at NY Hospital  (he personally does not take insurance) and Dr. Douglas Dieterich at Mt. Sinai Hospital. Both have more credentials and experience than a Gastro for proper evaluation, and both are involved in major trials.

-- Jim

[nygirl7]

Mike may I ask why you are so gung ho to get in a trial? Trials while they do pay for almost everything I believe do have some shortcomings such as you don't know which arm you will be put into (for example susan400 received vertex and inteferon but NO ribavirin and treatment can't work without the riba) so it was a waste of time for her.
Also, usually they won't let you have any of the rescue drugs.......and believe me if you need to get Procrit you will want it badly.

Is there some reason that you aren't going to do current SOC and see how that goes? I had both geno 1A and 1B and did 72 weeks of treatment and am SVR now 15 months post treatment.  It can work.

Debby

[mike716]

Both URLs worked for me. Thanks. The IFPMA website looks like just what I was looking for.

[mike716]

Hi, Jean. I'll give Dr. Jacobsen a ring on Monday. Good luck with your trial in Charlotte. Please let me know how it goes, or keep this forum posted. You and I are the same genotype and both of us are naive to treatment, so your experiences of the trial are of very real interest to me.

Mike

[mike716]

That's okay, Jim, nothing presumptuous about it, you're quite right, I am jumping the gun. But my situation is kind of unusual. I'm a New Yorker and I have an apartment here in Queens. Two years ago I went to Argentina for dental work (lots of implants and such), and I've been down there most of the time having that work done. It's very inexpensive there and some of the dentists are quite good.

Since I'm down there a lot, I got a health plan at a local hospital. Two months ago I came down with some kind of intestinal trouble (still to be diagnosed), and the gastroenterologist sent me for extensive blood analyses. That's how I was diagnosed HCV+: from a  from a routine blood test. I'm not in one of the recognized risk groups, so no one ever did an HCV antibody ELISA on me before.

I've been seeing hepatologists in Buenos Aires at my hospital and they are putting me through a lot of tests. I have to go back on April 25th for an endoscopy and an ecodoppler, looking for esophageal varices (a marker - and one of the worst consequences - of cirrhosis, so they tell me), and then probably a biopsy. The hepatologists there figure I was infected from a blood transfusion when I was a teenager, so they naturally expect me to have more or less advanced liver disease after carrying the virus for forty-five years.

I have no complaints about the doctors I'm seeing in Buenos Aires, the trouble is that they aren't equiped with the latest test equipment and there are no trials or new therapies there. I want to see what's happening here, in the forefront of HCV research. Also, there are no support groups in Argentina, and I don't think I want to try and handle this alone.

Anyway, I hope that explains why I'm putting the cart before the horse. Just trying to get information about treatment here in the U.S. (where I have no health insurance).

Thanks a lot for your suggestions. I appreciate them.

Mike

[mike716]

Hi, Debby. Well, I wouldn't say I was exactly gung-ho on a trial. I'm just sort of information-gathering, if you know what I mean. Checking out my options. And I have some specific ideas about what sort of trial I would want to get into. For example, there are some interesting alternative therapies. If it turns out from the tests that I'm still stage 2 or even 3 and I don't absolutely have to go on antiviral therapy immediately, I might want to volunteer for a trial of combination silymarin-naringenin-glycyrrhizin (botanicals), or some other alternative therapy for controlling liver damage.

So don't worry, I'm not going to volunteer for any trial where I might get put into a control group that's not receiving the full treatment, like what happened to your friend susan400. I'd take my chances at the hospital in Buenos Aires (see my post to jmjm530) before I'd do that.

Congratulations on being SVR for 15 months! Sounds like you are beating it. That's very good to hear, believe me.

I didn't know they were doing 72-month treatments. The literature all says 48 for 1b. Did they give you 72 months because you had both 1a and 1b?

Mike

[mike716]

I tried the IFPMA trials search using "hepatitis c" and "new york" as my key words. It gave me something like two hundred responses. When I clicked on the first three it came back with "Study Enrollment Completed".

This is what I meant about the trials websites not being patient-friendly. Seems like we're expendable. There are so many people with hepatitis out there, I guess the drug companies paying for the trials figure they don't have to treat us with respect.

Maybe I'm better off getting treated in Argentina. At least we're human beings down there.

No point in getting too pissed off, though, huh? It's late. I'll try again tomorrow.

Mike

[nygirl7]

First off I did go to Dr. Ira Jacobson for a second opinion myself - I don't think you can find a better more compassionate brilliant man in the universe.  when you meet him you see how very far onto the cutting edge he really is (he is the lead investigator of many of the big studies going on today) and how much he has dedicated his life to helping us. If I could have afforded to go to him I would have - however he is such a wonderful man he called my hep doc and offered to assist him in my case for free. Wow.

I originally set out to do 48 weeks too.  Unfortunately although my viral load plummeted down right away to only a count of 411 - at week 12 I still had that count left.  Because I hit a plateau and did not reach Undetectible until somewhere between week 12 and 24, using both the Berg Study (which Dr. J was principal investigator of) and the Spanish study - Sanchez Tapias - I took all that info and realized between the two studies it was saying that if I extended to wee 72 I had much better odds of beating the disease. In fact it went from like 50/50 to 1/3 chance I would relapse. Those odds were much better that I could clear so I went for it.

That's the great thing about the forum. We all share all the information that we dig up and discuss the HECK out of it and start to formulate plans that some doctors who aren't current on reading the new literature would come up with.

My doctor understood what I was saying but he wasn't a big shot so he sent me to Dr. J. and said that he should be the one to decide.  Dr. J. said if I wanted to know at the end of the day I'd done everything I could to push the odds into my favor the most I could that it was a good idea to extend - so I did.

These days now a lot of people are starting to extend treatment and it's becoming pretty much common if you aren't clear by week 12 but you are by week 24 to do 72. It sounds dreadful but really by that point in treatment you've already conquered the biggest side effects and are pretty much level so you just keep going.

I wanted this disease DEAD so I just went for it.

Hang around here and learn as much as you can. With this disease the more you know the better chance you have of being CURED.

God bless and good luck Mike!
Debby

[jmjm530]

Sounds like your cart is where it should be, albeit the horse appears to be Argentinian :) Touching bases with a U.S. based medical team sounds like a good next step, especially since you have an apartment near some of the best hepatoloigsts in the world. An appointment with Dr. Dieterich and/or  Dr. Jacbobsen will not only put you in touch with cutting-edge HCV thinking, but with available trial information as well. Also, if you do decide to treat in Argentina for other reasons, you could use the U.S. doctors as consults via phone or email.

-- Jim

[Mary4now]

Hey Mike,
Did you mention if you had a biopsy and what the results were?  I didn't see it as I ran through the thread,  Thx. M4now

[mike716]

Thanks very much for all the useful info on extending. When I have to make a decision, I'll remember.

You sound like a very brave person. I hope I can be as brave when the time comes.

Mike

[mike716]

I like your idea of consulting with Jacobsen and/or Dieterich from Argentina. That's what I've been lacking down there, someone to check with. I'll definitely be calling them on Monday.

This forum is great. Everyone is very supportive. For the first time I don't feel alone with this thing.

Mike

[mike716]

Hi, Mary. No, I haven't gotten to the biopsy yet. The hepatologist who's been assigned to my case at the hospital in Buenos Aires wants to do an endoscopy and an ecodoppler first. He's concerned about what they call esophageal varices, which, if I understand it, are enlarged veins in the upper alimentary tract, caused by cirrhosis of the liver, that can hemorrhage. He's probably had some experience with patients having that problem. He says that if they find varices they will put me onto antiviral therapy straightaway without a biopsy, because then they will be sure I've got advanced stage liver disease.

Everyone I've seen at the hospital down there figures I got the virus from a transfusion I had when I was eighteen, and I guess they think that after all these years my liver must be pretty bad, whatever the blood tests show. I'm hoping they're wrong.

I've seen a lot of doctors, including some at other hospitals in B.A. and even a private practice hepatologist. I want to get a lot of different opinions and as much info as possible. Some thought I should have a biopsy right away. I argued it with the hepatologist assigned to me and he convinced me to wait for the endo and the eco.

Apparently quite a lot of work is being done to find ways of testing the liver for disease without doing a biopsy. By hunting around on the web, I found some info about a new non-invasive test of the liver that uses an optical scan, by computer, of common tomographic images. The people who developed it (in Spain) claim that even a biopsy doesn't show the whole story because it only gets tissue from part of the liver, and sometimes the damage is in other parts. For what it's worth, here are some URLs about this new method of imaging the liver:
- http://www.ncbi.nlm.nih.gov/pubmed/18098299?dopt=Abstract
- http://www.hcvsinfronteras.org.ar/index.php/2008/01/25/mtodo-para-cuantificar-la-fibrosis-sin-necesidad-de-biopsia/
- https://www.isotrol.com/web/contenido?pag=/contenidos/capacidades/subseccion_soluciones/Fibrotac

The first link is to an abstract in English of the article on it in Hepatology magazine.
Unfortunately the second two websites, which are easier to understand, are in Spanish.

Maybe this is all too technical, but since I'm being put through a lot of tests I figured I ought to find out about them.

Sorry for the long-winded answer .

Mike

[HectorSF]

Mike, you say your blood markers are still good? How is your platelet count? Your platelet count can be a good indication of cirrhosis and portal hypertension which leads to the varices which you mention. I know from personal experience, as I am genotype 1 and have cirrhosis with portal hypertension and am taking meds for my varices while taking the standard PEG/COPEG treatment.

Cirrhosis - Platelet Correlation:
Cirrhosis (scar tissue in the liver) causes portal hypertension (high pressure in the portal vein)....
Portal hypertension cause the Spleen to enlarge and causes esophageal varices....
An enlarged spleen traps platelets. (Platelet count begins to drop) A low platelet count causes blood to not clot properly.

Remember a biospy is still the gold standard for determining the status of your liver. It's not a big deal to have done in the scheme of things you will go through in treating your HCV and the information obtained is invaluable. Remember, viral load, genotype, and biopsy results are predictors of your chances of clearing the virus (SVR). Depending on the status of the above data (including the stage of your liver disease determined by biopsy) can mean the difference between having an 50% chance (genotype 1 & healthy liver) of clearing the virus or a 10% chance (genotype 1 & cirrhosis plus portal hypertension)! This will have a huge impact on your expectations and course of treatment! Also by monitoring your vl over the first 12 weeks of treatment you and your doctor(s) will have a good indication of your chance of clearing the virus in the long run.

Best of luck which ever way you decide to treat your HCV!

Hector

[mike716]

Hi, Hector. Thanks for the info on platelets/cirrhosis/varices. I had two platelet counts from two analyses, one done in 2005 and another done recently. The one in 2005 says 192,000. The recent one says 156,000. I guess they are going down, although a number of websites give 150,000 as the limit of normal. Maybe I am at that limit now. Or maybe it's normal to go up and down.

I'm slated for another platelet count at the end of April. It'll be interesting to see what it says.

As to my blood markers,  they aren't normal but they could be worse. That's what I meant by pretty good. My ALT is around 59 now and has been the same over the three years that it's been measured (hepatograms were done on me as a routine part of blood tests before I was tested for HCV). The AST has stayed around 43. The GGT has varied between 85 three years ago and 40 recently. Weird. The worst is the bilirubin, which over the three years has stayed around 2.0, twice the upper limit of normal. Still, I guess it could be a lot worse.

These are not big increases, according to what I've read. But the NIH and Mayo Clinic articles on HCV, and what some of the doctors have told me, is that slightly elevated levels are the norm for chronic hepatitis C and that they don't correlate with liver damage.

There are other blood markers that are important according to my hepatologist, but I don't know what they are. The doctors in Argentina are very traditional and conservative and don't want to tell patients anything. They don't seem to realize that making a mystery about it just increases paranoia. But I do get a copy of all the test results, which is something, anyway.

Oh, and ecographs (ultraound) were done on me in 2006 and also again recently. The 2006 one says slight increase in size and density. The recent one says no abnormalities. Go figure. Although one hepatologist I spoke with told me that the size of the liver goes up with fibrosis and then down again when you get to cirrhosis. If that's true then these ecograph results aren't worth much.

Frankly, all these markers seem so ambiguous that i don't see how you can tell much of anything from them. Of course, I'm just repeating what I've been told or read somewhere on the Internet, you understand. I don't really know anything about this stuff. But it does sound like there isn't really any way of telling how bad my liver is without a biopsy or something equivalent. Which is why I'm interested in the new liver analysis method I mentioned in my answer to Mary4now, above.

Hell, I see my posts here are getting longer and longer. I guess I'm getting a little carried away. It's exciting to finally have some people to talk to about this.

Time to hit the hay.

Mike

[Mary4now]

"esophageal varices, which, if I understand it, are enlarged veins in the upper alimentary tract, caused by cirrhosis of the liver, that can hemorrhage. He's probably had some experience with patients having that problem. He says that if they find varices they will put me onto antiviral therapy straightaway without a biopsy, because then they will be sure I've got advanced stage liver disease. "

I would think you would have some symptoms if you had advanced stage liver disease, and when they discover that you do not have the varices, then you will have a biopsy?  The hepatologist I saw is a transplant hepatologist and he said that sometimes the virus does not do as much damage, and that the biopsy is indicative of the entire liver.  
Your blood work doesn't show disturbing levels and the ultrasound can also show how the blood is moving through the liver indicating whether there is fibrosis.  
I hope you will keep us posted and best of luck to you.  It sounds like you have alot of resources to see you through this let us know how you do, and what resources were most helpful..   best wishes

[SJL]

I know their is a trial being conducted shortly at the University of Florida, Shands Hospital.

I know literally nothing about it, but you might give them a call if your interested.
SJL

[Trish77]

Mike,

With all due respect to your doctors, there's no way they can KNOW where you got your HCV.  You also could have gotten it from the dental treatments you've received in SA or any other unknown source.  I wouldn't assume that because you had a blood transfusion, that's the definitive source.  A risk factor, yes, but not necessarily the source.  

As for trials...  on http://www.clinicaltrials.gov , if you make use of Advanced Search, choose United States, NY for location, use HCV in the Search Terms, limit it to Open Trials, exclude children and seniors by selecting the other box and choose Phase III since you've stated that you don't want a control arm where you get less than the full SOC (Standard of Care) of interferon and ribavirin - then you get five trials listed, some or all of which you don't qualify for.

Something to consider regarding trials .... sometimes the arms you get in a trial may not be the full treatment but may be palatable just the same, depending on the combination of trial drug and SOC drugs.  Something to consider.    I'm in the Phase II R1626 trial, a 7 arm trial and I considered all that.  I was willing to compromise on the interferon because any of those arms also included trial drug .. but not willing to compromise on the ribavirin and there was no compromise on that.  Well.. perhaps some because there is either 1000 or 1200mg of riba and if you need more than that .. you're not getting it.  I wouldn't have compromised on the riba, that's my own personal thing.  The least attractive arm to me of the 7 arms is the 90 rather than 180 dose of INF, full riba and 500mg bid of trial drug.  Even at that, I figured, based on the stats from previous trials of this drug, worth the risk looking at what the other arms had to offer.

Respectfully... I wouldn't wait past Stage 2 to treat ... and again, my personal opinion.  You're a 1b so you currently have a 40 - 50 % chance of success.  You're older and statistically they seem to say you respond better if you're younger.  Also, it seems that statisically HCV advances faster after you get to a certain age.  Some things you might want to consider.

So if you're considering trials... if you're Stage 1, you would have more of a luxury to try a natural treatment trial as in you'd have time to go on to other things.  However, there are NO natural treatments that have shown any success in *curing* HCV .. only in slowing it down.

As for the biopsy....here's a link to information about the Fibroscan.  From what I understand, it's available in only certain places in the U.S.  Not sure we have it anywhere at all in Canada (that's where I am).

http://www.medicalnewstoday.com/articles/71248.php

Just the same, from what I understand, even the needle biopsy is still superior to the Fibroscan with regards to accuracy of diagnosis.  If you read the article on the Fibroscan, the benefits are not the superior diagnosis but the lower degrees of discomfort to the patient.  Having said that, needle biopsy results in little discomfort to MOST people.   Nowadays, they seem to be taking multiple liver samples in a needle biopsy from various segments of the liver.  

Your article is interesting and while the fibroscan is considered close to a biopsy in results, the biopsy is still considered to be superior.  If you're shown to be early stage damage, you won't need to worry about some of these other conditions existing, ie those that exist in a cirrhotic liver. I'm wondering why you don't simply cut to the chase and just get the biopsy done rather than go through all these various tests?  I don't know what an endoscopy is but seems like a 5 second needle punch extraction by 4 times is whole lot less invasive!!  :)

Also.. no mention of your viral load or did I miss it?

Regards,

Trish

[mike716]

You wrote:

=I would think you would have some symptoms if you had advanced stage liver disease

Yeah, you'd think so, wouldn't you? But the hepatologist I've got insists on checking for varices, even without symptoms of cirrhosis. I'm not sure he knows what he's doing, but you have to trust somebody.

=and when they discover that you do not have the varices, then you will have a biopsy?

You're guess is as good as mine [grin].

=The hepatologist I saw is a transplant hepatologist and he said that sometimes the =virus does not do as much damage, and that the biopsy is indicative of the entire liver.

Maybe biopsies sometimes are, but I read a few research studies that showed that the liver can be damaged unevenly and that a single biopsy sample doesn't necessarily indicate the damage in parts not sampled. As I recall, the researchers said that a single biopsy could underestimate the damage. Although I don't see why the opposite might not equally be true.

I like the sound of the FibroTC method developped in Spain because it surveys the entire liver. The color graphics of the tomographic slices are impressive. I'm posting one from www.hcvsinfronteras.org.ar in my Medhelp profile, if anyone's interested.
  
=Your blood work doesn't show disturbing levels

True. It's too bad blood markers don't correlate well with liver damage.

=and the ultrasound can also show how the blood is moving through the liver indicating =whether there is fibrosis.

I didn't know that. Maybe the ecodoppler they're going to do in May will show this.

=I hope you will keep us posted

I will.

=and best of luck to you.

The same to you.

=It sounds like you have a lot of resources to see you through this

I'm doing my best to mobilize them down there in Buenos Aires. It isn't always easy.

=let us know how you do, and what resources were most helpful.

I will do that. Bye for now, Mary.

Mike

[mike716]

Hi, SJL. I'll check that out and see what they're up to. Thanks.

[mike716]

Hi, Trish.

I agree with you about not knowing how or when I was infected. The doctors were just making a conjecture.

It's interesting that you should mention dental treatments, because I argued that I was in an unrecognized risk group: people who frequently go to dentists. I've had dental problems all my life and have been treated by probably thirty different dentists, many of them in recent years.

As a matter of fact, I read somewhere that many doctors do consider insuficiently sterilized dental instruments a possible cause of infection, and that a perhaps even more frequent cause might be multiple use of drug flasks like local anesthetic vials. Those needle pricks in the gum that the dentist gives you to dull the pain when he's putting in crowns don't use up more than a small amount of the novacaine contained in a vial. When you think of how many injections of anesthetic they must give patients in a week, it must be tempting for dentists to save money by re-using the almost-full vials.

That may sound like a nasty slur on dentists, but then I've never much liked them anyway. They do a lot of harmful things to people, like putting amalgams containing mercury in your mouth, mercury being a poison to humans. Not to mention convincing patients to have work done that they don't need, or before they need it, just to charge them for it. But I wax resentful...

Thanks very much for the help in using the clinicaltrials.gov search engine.

Likewise for your reasoning about the various arms in your drug trial. I understand and appreciate your considerations. Very useful and instructive to read them.

Regarding the stage I might be in, I don't think I have any good information on that yet, do I? If I've been infected for a long time, then I'm probably controlling it well and might still be in stage one or two. But, like you say, I don't know how long I've been infected. It could be since I had a blood transfusion forty-five years ago, or since my last visit to the dentist in January. Being 64 years old isn't too good, of course, regardless of the time infected.

As to phytopharmocological therapy (herbals or botanicals), I look at it like this: The only known damage the virus does is to the liver; so if I don't have too much liver damage yet and can protect the part of the liver that's still functioning, and maybe regenerate some hepatocytes (to compensate for those being killed by the virus), why should I go through a lot of suffering to eliminate the virus from my body? Liver tissue is redundant; we can live with half a liver so long as the vital machinery in it is functioning. So stopping the virus from harming what's left of my liver seems as important to me as killing the virus. There appear to exist substances that are capable of doing that. Why shouldn't I make use of them? After all, we're full of viruses and bacteria. If they aren't causing us harm we don't go through 48 weeks of adverse effects to get rid of them, do we?

Frankly, I've always been rather suspicious of the directions taken by pharmaceutical development. The big pharmaceutical companies virtually control the practice of medicine, and they can't make money from unpatentable substances. I'm not a nut. I've done courses in cellular and molecular biology on the graduate school level. I'm a retired research investigator and writer. I've worked as a political and economics journalist in the U.S., Europe, and South America. I spent five years doing bibliographical research on HIV at the Pasteur Institute in Paris. Not to blow my own horn too strongly, but my opinions on the subject of research into therapy for viral diseases have been carefully considered. If I can't stop the virus from destroying my liver I'll try to get rid of it, with antivirals, polymerase inhibitors, protease inhibitors, oligonucleotide antagonists, or whatever else is available. But I'm not at all convinced that the latter is easier to do than the former.

A last note on the subject: Did you know that a chemical - glycrrhizin - found in licorice root has been shown to interrupt the pathway - apolipoprotein B secretion - by which newly-created HCV virions exit hepatocytes? If new virus could be stopped from cross-infecting liver cells, perhaps liver damage would slow to a halt. Isn't that as worthwhile a pursuit as killing the virus in the bloodstream?

Re Fibroscan, I don't think that's the same thing as FibroTC, the method I mentioned. As far as I know, Fibroscan is an elastographic method employing ultrasound, whereas FibroTC is a technique for scanning digitized tomographic images. Correct me if I'm wrong.

Furthermore, one of the advantages of the FibroTC technique that is not to be underestimated is that digitized conventional tomographic images of the liver can be emailed anywhere in the world where there is someone with a FibroTC scanning program on a PC. Ergo, it doesn't matter where you are or where the PC/Fibroscan program is. See the convenience?

You mention taking multiple samples by biopsy. I suspect, from what I've read, that that is the only way to be reasonably certain of making a correct assesment of overall liver damage. But by doing that, the chances of causing harm to the liver or other organs is increased. This is a highly invasive technique. At best it can only show a part of the truth. And what about those patients who undergo repeated biopsies, the stage I and II patients who don't go right into antiviral therapy and have to have their liver checked every so often to assess disease progression? What are the chances of them eventually being hurt by the needle?

Biopsy is a primitive technique. It's high time modern technology replaced it. If my hospital in Buenos Aires won't do a CAT of my liver on my health plan, I'm going to pay a private lab to do one for me and then email it to the people in Spain who do the computer analysis. I've already been in touch with them. I think they like the idea of doing a collaborative FibroTC between Spain and Argentina. If doctors in the U.S. aren't going to move on this, well, they'll get left in the dust. I'm outsourcing my health care. It's globalization [grin].

I don't know my viral load yet because they followed up the HCV antibody test with a qualitative PCR. That only shows you've got viral RNA, not how much of it. But I got an order for a quantitative PCR from my hepatologist and had blood taken before I left to come up here.

The endoscopy is to detect varices. Even if a biopsy shows advanced liver disease, it's still important to detect varices. Hemorrhaging varices are as bad as or worse than cirrhosis of the liver. A cirrhotic liver can be removed and a sound one transplanted, which prolongs life. But once you start to vomit blood from hemorrhaging varices, you die.

See ya round, Trish.

Mike

[Marcia2202]

Hi Mike,

I have been following this interesting blog. I was myself diagnosed about two weeks ago and do not know my genotype, yet. Let alone biopsy etc. As I say, still in the kindergarten stage of the whole treatment situation and Hep C. I am like everyone else at this stage waiting, waiting and waiting for results. So trying to use this time constructively, I am trying to turn every stone. I saw that you are also interested in alternative treatment. I have understood that the only chance to 'kill' the virus is through conventional meds. But I believe that there is a lot of benefit one could get from herbal sources, especially through Traditional Chinese Medicine. TCM is about 2000 years old, so the Chinese have had a looong time to perfect their meds. There is  Dr. Zhang ( doctor in Western and Chinese Med.) in NY, who has had a lot of success helping HIV and HCV patients with his Herbal protocols. His expertise is viral diseases. I said helping, not curing... He is a very respected doctor in US, Japan and China. I am considering to supply with his protocol. He is the only MD and Herbal expert I have found so far, who seems to be specialized in the field of Hep C and to work with known hospitals like Mt. Sinai, John Hopkins...

[Trish77]

Mike:  "As to phytopharmocological therapy (herbals or botanicals), I look at it like this: The only known damage the virus does is to the liver;"

Actually, this isn't true.  The HCV virus is known to cause problems to other organs and systems in your body as well.  Just to name one, there appears to be a higher incidence of Diabetes II in HCV persons and it's thought to be because the virus causes an insulin resistance.  Here's a link that contains further links to MANY studies on various extra-hepatic manifestations of HCV:

http://www.hcvets.com/data/hcv_liver/extra_hepatic_and_other_manifest.htm

So .. perhaps you can protect or inhibit damage to what is left of the liver, how about the rest of your body?  Just something to consider.  Really, I think the key is to find out what Stage of damage you are at and then you'll know better what you can afford to do with the time you have.  Not to be fatalistic, but the stage you are at determines what your luxury of time is which determines the luxury of your choices.  

Then there is the psycho-social aspects of living with HCV.  There are always precautions to take so that you're not a risk to anyone else and the disclosing of it at appropriate times.  You don't seem like you'd have too much issue with that though.  Try being a woman in the dating "game".  Not fun. :)  There are a number of reasons why I chose to aggressively pursue treatment while only Stage 1 and was not willing to live with this any longer.  Not all of them were medical, some of them were lifestyle decisions based on impact to career, family and relationships in the long run if I ever ended up needing treatment, say, in the next five years if my disease progressed rapidly. My known risk factors have me carrying this for potentially 23+ years and it is not a linear disease.  I'm sure you've considered all of that but just throwing it out there for dialogue's sake.  Interesting to get different points of view on all this and treatment decisions of HCV are very individual as this disease impacts each person differently in so many ways.

You've had a full CBC I would imagine .. and I wonder where your platelets are at?  Often, low platelets can be an indicator of advanced liver disease.  So far, your stats seem to be looking good.

As for the biopsy ... permit me a little latitude for discussion here. :)   I'm not sure I'd go so far as to say a biopsy is "highly" invasive.  It's invasive, yes.  Even with an endoscopy, depending on what's being tested for, if it indicates significant cause for concern, an actual tissue sample is then taken in many cases - I don't know about yours.  ( I did get around to reading up on it finally - never too satisfied with "not knowing".)  And that's what a biopsy does. It gets right to the "meat" of the matter so to speak.  Your endoscopy is not without risk either and perhaps on the same level of the biopsy.  And inserting a tube into various orifices of one's body seems highly more invasive to me than a biopsy!!  lol :) And in the end, you still don't know the extent of your liver damage.  Only that you do or do not have varices.  So.. I'm still wondering.. why not cut to the chase unless your reasoning is to at least eliminate worst case scenario and that I understand. Not necessarily agree but I do understand.

I agree .. would be nice to have an alternative to biopsy that is not invasive AND effective.  There have been some studies recently that indicate a biopsy may be replaceable by a simple blood test. I'll see if I can dig them up and I think jmjm530 posted that way back when? (Jim?)  I'll be interested to see further studies on how the CAT scan measures up.  In the end, I personally want the most accurate diagnosis I can get but I'm glad the Fibroscan exists in the U.S. for those persons who don't want to go the biopsy route.  It will certainly be awhile before the average person can get a CAT scan and it will be awhile before there are sufficient studies that will a) prove that to be as or more effective than biopsy and b) an accepted practice that insurance companies and governments (in my case) will accept. Only a certain number of people get to take advantage of "globalization" at this point in time, my friend.  In the meantime, after having gone through a biopsy, I wouldn't want to scare people off of it.  While yes, it is not without it's own risk factors, they are minimal and the majority of persons are in and out in ten minutes with minimal discomfort AND the gold standard of diagnosis to boot.  At least at this point in time.  

And I'll leave it on your "last note" :)  :

Mike:  A last note on the subject: Did you know that a chemical - glycrrhizin - found in licorice root has been shown to interrupt the pathway - apolipoprotein B secretion - by which newly-created HCV virions exit hepatocytes? If new virus could be stopped from cross-infecting liver cells, perhaps liver damage would slow to a halt. Isn't that as worthwhile a pursuit as killing the virus in the bloodstream? "

Licorice Root as a CAM is well known. I do notice that licorice makes me feel better from the nausea while on treatment but maybe that's a placebo thing. :)  And yes, I would agree that CAM therapy is well worth pursuing.  However, it HAS been pursued and continues to be pursued and yet there is nothing that has come up that has definitively been proven to be a CURE.  

CAM therapies continue to be worth exploring and will always be worth exploring. IF you have the luxury of time to be able to explore that with one's current diagnosis.  At present, however, there are no CAM therapies that are known or proven to CURE Hep C.  Only to mitigate the damage.  They are especially worth pursuing for those where the SOC treatments are not working, unfortunately, and the only alternative is to minimize the damage of living with Hep C.  A good friend of mine, his mother has Hep C.  She also has kidney disease and she's not able to take SOC therapy.  Therefore, CAM therapy is all she has.

Be careful with licorice root until you know your status.  It's apparently damaging to those with cirrhosis and you're on a quest to find out if you have that or not.  Always the caution with any CAM or herbal therapy, of course, is to determine what the impact will be and if it's safe for us as persons with Hep C.  There is a long list of things that are NOT and it seems to require research on each thing with respect to the unique impact on a person with HCV before putting it into our bodies.

If you want to take something in the meantime, perhaps Milk Thistle.. seems to be the best bet out of all the CAM therapies so far, the least negative impact and perhaps others will weigh in with more.  Another link for you on CAM:

http://nccam.nih.gov/health/hepatitisc/#research

I think one of the links on the side in this forum mentions what I see people referring to as HR's liver diet or some such thing.  You might find things of interest there too.


Whew.  Plenty of food for thought. :)

Trish

[Marcia2202]

Sorry, I forgot to mention the site. www.sinomedresearch.org. I am considering to fly all the way to NYC for an appointment, if necessary. I live in Northern Europe (Denmark).

[giddyup]

center for the study of hep c York and 70th 4th floor tel [phone]

[mike716]

Hi, Marcia. If you do contact Dr. Zhang, please let me know what he says. I'm studying the literature and am thinking of putting together a CAM (botanical) treatment for myself. Of course, I will wait to see what stage I'm in, and won't take anything without consulting the doctors. Although they don't seem to agree about very much, especially regarding botanicals.

So far, I like the super-silymarin preparations that combine silibin (the active ingredient of milk thistle) with phosphatidylcholine. I already know a little about phosphatidylcholine, which is used as a standalone in certain affections, and also serves to help the silibin to be absorbed by the body. I also like glicyrrhizin, although there are warnings about not taking it too long. I am already eating a lot of grapefruit, which has naringenin, a strong antioxidant.

But I will be very interested to hear what Dr. Zhang prescribes for you, if he does, so keep in touch.

Good luck with your tests. You're young so you are probably at an early stage and can lick it without too much grief.

By the way, I see you are Danish. What's the situation there? Are a lot of people infected? I live in Argentina, although I'm actually a New Yorker, and in Argentina only about 1% of the population has hepatitis C. I'm not sure why it's so much lower than in the U.S. Maybe it's just a statistical artefact. They probably don't do very good surveys down there. But it might have something to do with fewer blood transfusions, or fewer people shooting up. The Argentines certainly like tatooing themselves, so that can't be it. Who knows? Anyway, there does seem to be an advantage to being an underdeveloped country. (You'll have to excuse me, I have a strange sense of humor.)

Keep us posted on your progress, will you?

Cheers!

Mike

[Marcia2202]

Hi Mike,

Thanks, I really hope that my hep c hasn't progressed to anything dangerous. I could have contracted it any time between 1978 and 1998, while living in Indonesia, but I think the 80's would probably be most likely. Have also had 6 rhogam shots between 81 and 91. Saying that, the most common type of hep c in Indo is 1b and they have found cases of genotype 10 and 11. ???? weird, that's definitely not a kind i had in mindt, is it now :-)  Gotta keep the humor up, especially with five loving kids in theirlate teens and twenties. Just that I'm feeling so tired all the time... Anyway, no complaining...

I have contacted Dr. Zhang on his forum. This is what he replied:

Hi Marcia, Generally speaking, Hep C is a very slow progressing condition and a large percentage of patients may go years or even decades without any symptoms.(It is considered a non-fatal illness) If we can control the progression of fibrosis and liver inflammation, there is plenty of time to wait for potentially effective anti-viral medications to be developed. Depending on your genotype, the current conventional anti-viral medications might be a good option. In the USA, genotype 1a is the most common, and also the least responsive to conventional IFN therapy. Also, I suggest you have a liver panel blood test done to check your liver enzymes. If you have the option, you may consider having a liver biopsy procedure or a Fibrosure/Fibrospect test. (this is a newly developed blood test used to estimate the stage of fibrosis progression) The liver biopsy is still gives the most accurate picture of progression. If you are interested in supportive treatment, we can set up a phone consult. I suggest having the liver function test beforehand. I can be reached via email and our clinic number is 212.573.9584 Hope this helps, -Dr.Zhang

I wrote him a looong email afterwards, giving him all my info. I also asked his opinion on putting me on a protocol before treatment... So basically I am waiting for his reply.

There official statistics say that there are ca 15.000 cases of chronic hep c in DK  out (5 million inhabitants), which is supposed to be lower than in other parts of the world. We have free medical care, but not free meds. The state pays for part of prescription meds. One can get a dispensation for chronic diseases, though.  I have a private supplementary insurance, which pays for the difference between state and own payment. So I get everything reimbursed. Guess years of paying them will finally pay off. :-)

I'm actually not Danish, but have been living here for the past 10 years. I'm Swedish (mom) - Amercian (Dad) , grew up in France, Germany and Indonesia. Never lived in Sweden and unfortunately only been to US once. I love NYC, my bro used to live in Brooklyn, now moved upstate, 2hrs drive from the city.

'Anyway, there does seem to be an advantage to being an underdeveloped country. (You'll have to excuse me, I have a strange sense of humor.)'  ------

Your humor is cool ... and ...
I do agree on many advantages in underdeveloped countries. People are so friendly and inviting. The social aspect is so much more pronounced. I miss Indonesia often, also Mali... Go there once a year, as my husband is half Malian. People live in a different way, than here in the West. Somehow it feels much more human. We are always running after something, the paper work, tax papers, bills... never ending. One is always on the go, one can't just be. But I'm glad I got sick here and not somewhere else, would maybe not be able to afford being sick and having to pay meds and medical bills out of own pocket. But then again, living costs are so minimal in those countries... and taxes are crazy high here. So I guess it ends up all the same ... back to square one :-)

[mike716]

Okay, Trish, I read your whole hcvets.com webpage and I admit that you got me there on the "only damage is to the liver" thing.  I plead non compos mentis. That means "I am a jerk". I don't know if it's my age, having hepatitis, or what, but I find myself frequently make unsubstantiated statements, usually for dramatic effect. Always backfires.

Actually, I'm trying to convince myself that this pain in my abdomen and sides, which is what I presented for originally, isn't related to the HCV. Of course, when the doctors tell me it's not related, I tell them that I don't believe them. But secretly I hope they're right. Because if it's a symptom then I'm in deep trouble.

I wonder if IBS (Irritable Bowel Syndrome), or whatever I've got, is going to keep me off the trials. When they do the colonoscopy, they'll probably find all sorts of ghastly stuff in wrong with my kidneys and pancreas (I already found out I have gall stones and a chyst in one kidney), and then I won't be able to take combination therapy either.

Probably when I go in for the general anesthetic prep on April 30th, they'll tell me I can't take g.a. for some reason. :~(

I agree with you that "the key is to find out what Stage of damage you are at and then you'll know better what you can afford to do with the time you have." Not knowing how much liver damage I've got is sure making me nervous. As you know, I don't much like the idea of someone sticking a needle into my abdomen, but I'm at the point where I feel like going to North Shore General tomorrow morning and begging them to take a biopsy, just so I can finally find out the truth.

By "psycho-social aspects of living with HCV", do you mean not freaking out your friends by telling them you're infected, or do you mean using condoms? As to blurting it out all over the place, being the kind of guy I am I kinda like seeing the look on their faces when I tell them. It's fun. A lot of them probably have it, too. That's what they're thinking, and they're probably right. As to condoms, I don't need them, unfortunately. Argentines are Catholics.

Are you in the dating game, Trish? What's that like? How do you play it? I'm a square, I never got to play those fun games. Except for a while when I lived in the Haight in the 'sixties. You know you can get crabs from sleeping around? Okay, okay...

You figure you've been infected for 23 years? I guess that's quite a while for those nasty little RNA strands to be running loose inside you, but imagine how I must feel when they tell me I got infected when I was eighteen, 46 years ago. Truth is, we could just as easily have gotten it last year from someone who was bleeding into their bloody mary.

What is a CBC? The only CBC I'm familiar with is the Canadian Broadcasting Company. I'm not clued into all these HCV-insider abbreviations, Trish. Could you spell that one out for me?

My platelets were at 156k the last time I looked. Down from 196 three years ago. Looks like pretty soon they'll be below 150, and there goes another bunch of trials I can't get into.

You liked my stats, huh? You think a total bilirubin of 2.2 mg/dL is nothing to worry about? I'm happy to hear it. Really I am. I may only need half a Lorazepam to get to sleep tonight.

Although I read in a trial flyer today that they aren't accepting anyone with over 1.6. Hell, I bet half the doctors running the trial have more than that.

You're undoubtedly right with your biopsy/endoscopy comparison. The thing is that with the endoscopy they're gonna put me out with a general anesthetic, whereas for a biopsy they just give you a local. I'm a scaredy-cat, see?

Hey, I liked your "gets right to the "meat' of the matter" metaphor. Very clever.

Look, a number of hepatologists told me to go have a biopsy done and quit fooling around, but the one that's been assigned to me at my hospital wants to do the endoscopy first. What am I gonna do, tell him he's a creep and to forget it? The poor guy probably lost a coupla patients with bleeding varices and doesn't want to lose another one. What the heck. I'm gonna let him do it. They've gotta do a colonoscopy anyway to see what's wrong with my gut, so while I'm out they can stick one of their high tech micro-cameras down my throat, too. Just so long as the anesthetic doesn't wear off while I'm on the table. That's all I'm worried about.

Yes, I read a couple of articles about the blood test that is supposed to replace biopsy. They've figured out some more liver markers that read for cirrhosis, or something. But like a lot of other tests, it isn't too good unless your in an advanced stage.

FibroTC, the new Spanish invention, isn't just another CAT scan. It's a program that optically analyzes a digitized CAT scan according to certain crieteria, producing a graph of each CAT slice that shows the state of each part of the slice. Did you see the one I posted on my profile page? Their article in the February number of Hepatology says it was a multi-center study involving a lot of people, and the technique works. It looks much better than Fibroscan.

I guess in the U.S., since FibroTC isn't yet an approved medical technique, no one will agree to do it and the insurance companies and the gov, always sensitive to the desires of the AMA, won't pay for it. In Argentina, things like CAT scans aren't considered to be such monumental operations and don't cost very much. I got a price of $350 from a big new private lab there for the CAT. Medicine is conducted in a different manner there. One might say it was more humane. Certainly more accessible. For example, you can get a quantitative PCR just by asking your GP for an order and paying a lab $50. And it's only $1,000 round-trip to fly down there. Something people might like to keep in mind. Globalization isn't just for the multinationals, you know. Us plebes can take advantage of it, too. A lot of Americans have out-sourced their medical care. I met many older couples living in England for that reason when I was there in the 'eighties. Thatcher messed that up, but there's always Argentina...

You like licorice, too? I always dug it. The real stuff, not those plasticy twists they sell in the grocery store.

As to none of the CAMs having been proved to be a cure, that's unreasonable. The expensive drugs they're giving to people now don't often cure either. Like I say, the pharmaceutical industry has no interest in letting it be known that there are non-prescription botanical medicines that can help you. It's a brave MD or biochemist who will come out and say that a plant extract works. A bad career decision. Ever see the film "The Constant Gardener"? It's not a fantasy story, you know.

You say: "there are no CAM therapies that are known or proven to CURE Hep C. Only to mitigate the damage." Well, isn't that all combination antiviral therapy does for the millions who don't achieve SVR?

Anyway, I never suggested it as a replacement for antivirals. I just think stopping damage to the liver is as important as killing the virus.

You are surely right about being careful of what we put into our bodies. Too bad Coca-Cola, Swift, and all the others who are packaging poisons don't agree with you.

Thanks for the nccam.nih.gov link. Very interesting article. I copied it into my computer and am planning to re-read it tomorrow.

Re diet, I wish I could find a really helpful article on that. I was put on a diet for my gastrointestinal problem, but none of the hepatologists at my hospital gave me any info on a hepatitis diet. Should be pretty important, though.

"Plenty of food for thought. :)"  Ha-ha. There you go with your funny metaphors again, Trish, my girl.

Well, I can feel the Lorazepam seeping its way into my blododstream, so I'll wish you a fond adieu. Gee, I wonder if Lorazepam is contraindicated in hepatitis C? No, no, you can't take that away from me...

Mike

[mike716]

Thanks, giddyup.

[mike716]

What's Rhogam? Sounds like something from the Kahrma-Sutra.

Are we up to genotypes 10 and 11? Won't this virus ever stop mutating? I mean, give us a break.

Ya gotta feel sorry for the guys and gals working on a vaccine. They must be having fits.

Huh? You've got five kids in their teens and twenties? Did I read that right? People who have large families impress me. I'm a bachelor myself. Too irresponsible to get into having a family. But I think they're great. Lots of love.

I don't want to scare you if you haven't thought about it yet, but have the kids been tested?

If you're feeling tired, maybe what you need is more exercize. Sounds like a contradiction, but frequently people who feel tired just don't get enough physical exercize. Maybe you should try working out in a gym. I do. It really picks you up. Cleans you out and gets the right enzymes flowing. All my doctors tell me to get a lot of exercize, which I try to do anyway. Like tango dancing. It's great fun, people of every age do it, and it gets to be a habit. Tango mania is gripping the world and for good reasons.

I'm a little disappointed with Dr. Zhang, Marcia. He didn't say anything different from what they all say. I thought he was gonna come out with some super-charged oriental medicine like acupuncture and eating seaweed. Are you sure this guy is really Chinese? Maybe his real name is Izzie Goldstein and he's from Flatbush. Wouldn't surprise me in the least. Probably picked up Zhang from one of those Taiwanese kick-fighting films on cable. The next time you talk to him, ask him about Gigartina Skottsbergii, the red marine algae for treating genital herpes. If he doesn't know what you're talking about, I'd give him the boot.

On the other hand he might be a famous alternative therapy practioner who's had the fear of god put into him by the AMA. "How'd ya like ta go back to Szechuan, buddy? That can be arranged, ya know."

You asked him for a protocol before treatment, huh? That was a good move. Put up or shut up. But maybe you shouldn't have emailed him. You never know who's reading them. The night has a thousand eyes.

15,000 out of 6 million is only .25%. That's really low. How do they do it? Maybe they don't bleed so much up there because of the cold. Probably, being a country that has an enlightened drug policy, they have been giving free disposable needles to the addicts since forever. That only began in the U.S. when the economic burden to the state of HIV became too great. Another case of What You Sew So Shall Ye Reep.

I'm glad you're covered by insurance. That gives you some sway in what they do with you.

Sounds like your a globe-trotter like me. It gives you a different perspective on the variety of the human species, doesn't it?

You like New York? Only a tourist could say such a thing. But don't think I'm not proud to be a New Yorker. Why, we have the largest species of rats in our subways of anywhere in the world. It's been proven in multi-center trials.

Mali and Indonesia sound fine. I missed the East and probably now won't ever get there. But I've been to Topeka, Kansas.

Signing off. Starting to have Lorazepam delusions. Like, I thought I heard a bird outside my window. Can you imagine that? The last bird around here was in '58, when they were all flying west to get away from the acid rain coming out of the Jersey oil refineries. Birds coming back could be a bad sign. Maybe they think us humans aren't going to be around much longer.

Mike

[Marcia2202]

Hey, thanks for the reply. You made my day, you see I love your humor.

You see, I am rh neg and rhogam is a shot made from human blood, used to kill anitbodies. Here in short and simplified. I don't remember all the facts, as my mind is foggy.
During pregnancy the mother's and the child's blood do not mix. During the process of birth, a little of the child's blood enters the mother's blood stream. If the mother is RH neg, she will start producing antibodies to attack the positive blood. Rhogam has to be administered within 48 hours, to prevent the mother's blood from producing them. If not, the antibodies will attack a consequent pregnancy, if the fetus is rh pos. And one can have a miscarriage, if enough antibodies have been produced. Or babies can be born severely jaundiced. I had all six shots before they could screen hep c in donor blood.

Saw Zhang's pic, doesn't look like an Izzie ... I also expected another answer, but if I come to think of it, it was quite sane. He wants to have all the details first, I guess and obviously, one cannot constitute the treatment with herbs. ??? It will be interesting to see what he will reply.

You asked him for a protocol before treatment, huh? That was a good move. Put up or shut up. But maybe you shouldn't have emailed him. You never know who's reading them. The night has a thousand eyes. ?????  am not doing anything illegal, am I???

Gym??? Can't do it at the moment. Just got back from a 1/2 hour walk. Am totally exhausted. I can do a little Pilates and I have a rebounder. So that's about all I can take at the moment. Have always been an active person, could go for 18 hrs a day, not too long ago, but now it's a different story. I hope the energy will return, or at least some of it. And I'm not on any medication whatsoever, nothing at all. All my blood counts are normal, except ALT 136. But I do have a kind of stinging pain around the right area, sometimes all the way down to my leg. My GP says it can also go all the way up to the shoulder. Also get totally restless legs, driving me nuts at time and painful joints.  I live and eat healthy, not under nor over weight. Am happy and content with my life. So what is really, really bothering me is chronic fatigue and the foggy head. I feel sooo stupid sometimes, or better most of the time. Today I walked out of a shop into the street with some unpaid stuff in my hands, actually figitting around with it. Fortunately my daughter-in-law-to-be asked me about the stuff. Turned right back into the store and told them I had accidentally walked out without paying. Embarrassing! They laughed, good.

About the kids, I got five and my husband got five ...that makes ten between us... All between 17 and 31, plus a 2yr old grandchild from my hubbies side. It's really nice when we all get together. Only my youngest is left at home. So it's quiet now.

Take care, hope the birds have left you alone.... Almost sounds like a new age Hitchcock ... and yes, I was a tourist in NYC... and I guess 2 weeks is not enough to start hatin'

Marcia

[Marcia2202]

forgot  .... my husband came back negative. Are getting 2 of my kids results tomorrow and the others next week. We are not testing my husbands kids, as there is not even the slightest possibility that I could have infected them.

[mike716]

Hi, Marcia. Sorry I couldn't get back to you before this but I had some trouble with my computer. It got infected with a virus (no joke intended) on Monday night. I think it's okay now.

I'm happy you like my little little ironic jokes. At least someone does. 'Cause it looks like the rest of the people on this thread didn't appreciate them too much, as they are all gone except you. That's okay, it's kinda cosey in here with just the two of us. Maybe some of them will come back when they have time.

I'm not sure I understand about the Rhogam, but I'm glad you're taking it if it helps you and protects your kids.

Yeah, I am interested to see what Zhang says. Don't forget to let me know. This guy sounds pretty cool.

No, you are not doing anything illegal. I was just letting my paranoia about email hang out. You know, after all my remarks about the AMA. Just kidding around.

You have some bad symptoms from the hepatitis, like fatigue and back pain? Is it possible, since you were dignosed HCV+ only two weeks ago, that you are in the acute stage? I've read that those kinds of symptoms are common in the acute stage but not so much in the chronic stages. Could you have just recently become infected? I think the viral load (quantitative PCR) would tell that, because in the acute phase the viral counts are higher supposedly, since your immune system hasn't had time yet to build up its defenses.

I'm really sorry to hear about your physical troubles. Being dazed with a foggy head can be a real hassle, I bet. Although your mails to the forum are clear enough.

That's very funny about almost lifting stuff from a shop. The Health Department should issue all of us HCV+ people with cards saying: "This person has Hepatitis C. As a result of the disease, he/she may do strange things, including commit misdemeanors. Please be compassionate and do not prosecute."

You have ALT of 136? Well, that's a little high, but it's well below 5x ULN (Upper Limit of Normal), which is around 250 I think. They should check your ALT and AST periodically to see how they fluctuate. Mine have been going up and down depending on various things like diet, exercize, sleep, and probably a lot of other factors I'm unaware of.

10 kids?!?!  Holy smokes!!! Ain't nobody better be messin round wit you, huh? You got an army to protect you.

People who come to New York for two weeks always rave about it. They should try working here in the winter. Or trying to commute from the suburbs. Or dealing with parking tickets. Or going to the hospital.

Which reminds me, I decided to do what a number of people in this forum suggested and go see one of the hepatitis specialists in Manhattan. So on Monday I called first Dr. Jacobson and then Dr. Dieterich. Jacobson's secretary told me that he was too busy preparing for some big hepatitis shindig in Memphis or somewhere and couldn't see me this week, but that I could send in my particulars and she would set up an appointment for when he gets back. I told her I didn't have insurance and asked much he charges for consultations. Take a guess what she said... $700!!! I was speechless. She thought we got cut off and kept repeating "Hello...Hello...Are you there, Mr. Sondow..." She was maybe scared I had fainted. Anyway, when I recovered my voice I said "Thanks, but no thanks", and hung up. This guy Jacobson may be a big macher in hepatitis and all that, but 700 bucks for a consult? Let's see...a consult takes maybe 1/2 an hour, so in an eight hour day that would be 700 times 16, equals $11,200. Times 250 working days in a year, comes to $2,800,000. Not bad. After a coupla years of that, he can retire and go play golf in Miami.

Anyway, having struck out with Jacobson I called Dieterich. These folks sounded more reasonable. Secretary said he could squeeze me in on Tuesday, yesterday. When I asked "How much", she said his consults start at $180 and go up from there depending on the treatment. Since I don't want any treatment, I figured maybe I could get out of there for the $180, which I can swing.

So yesterday I trooped over to Mount Sinai Hospital on 98th Street between 5th and Madison. Pretty swanky address, but what the heck. I go to the 11th floor, right on time, and the guy sleeping at the reception desk hands me a clipboard with five pages of forms and tells me to have a seat.

I was in the waiting room for an hour filling out those forms. The first was about insurance. That was easy to fill out. I just put "No" in all the blanks. Then came the waiver saying I accept all financial responsibility for treatment. I signed with a certain amount of reluctance and trepidation. Then there was a form where I had to put down my personal statistics like address and phone, followed by a list of questions. The first one was: Religion. Now, I don't think it's anybody's business what my religion is, so I put down "None of your business". The next question was: Race. That kinda got my dander up. I thought this **** went out with desegregation. So I put down: "Homo Erectus", which is our species, not race. Actually it's "Homo Sapiens", only I don't think we are very sapiens. "Erectus" is an observable fact; "sapiens" is a value judgement.

After an hour in the waiting room filling out forms in the middle of a bunch of people with upper respiratory tract infections all caughing without covering their mouths, a nurse calls me and shows me into a consultation room. She tells me to sit down, pulls out a clipboard, and starts asking me more questions, like "How tall are you?". I said: "What's it to ya?". She says: "I got to ask you these questions and then I'm gonna take your blood pressure and listen to your heart". I say: "Now you wait just a minute. I came here for a consult, not treatment. You're setting me up for some humongous fee. Forget it. I got some lab results here and I just wanna chat for a minute with the doc. Cool it with the dumb questions and the "roll up your sleeve" routine, okay?" She goes running out to complain to Dieterich, who's in another room: "He won't answer the questions, he's not cooperating". I hear Dieterich laughing. This gets me even madder, so I grab my coat and my ice skates and split outta there and over to my brother's apartment for some grapefruit juice.

I had a real bad day yesterday, lemme tell ya.

Today I got up after a good sleep, had some oatmeal, fixed the tire on my bike, banged on the floor to get back at my downstairs neighbor for playing the violin until 2 A.M., then went out to the park to say a prayer by the tree where me and my brother put my mother's ashes when she died.

I feel a lot better.

Mike

[Marcia2202]

Hey, sorry to hear you had such a bad day ... and glad you're feeling better...

I was just thinking, don't you think Dieterich was laughing at the nurse ... She was acting quite silly alias stupid. He seems to be quite alright, just watched a 49 minute video of one of his presentations. He seems to really know his sh...

Am kind of disappointed about Mt. Sinai. I thought it was one of the best, my sis-in-law used to work there. Physical therapist. It's weird that they would treat you like that. (They should know better that us people with hep c are not quite right in our heads. Ha, ha. Just look at me almost shop lifting without knowing it. This morning I talked to my GP on the phone. Instead of saying 'thanks a lot for calling' , I said 'talk a lot for calling'. We had a good laugh... I come out with things sometimes, my kids almost roll on the floor. I should definitely run around with a tag around my neck, warning ppl that I'm potentially crazy, due to hep c) Back to Mt. Sinai. I mean, just getting to the hospital, is already a challenge in itself, than filling out forms for 1 hour, with a foggy brain. And then all these questions, probably for statistics. That's why ppl end up not getting treated... Very bad move, the way she handled the situation... So patronizing... ewww

Mind you, you had me almost rolling on the floor with your story, (I loved the part with homo sapiens, homo erectus and the none of your business religion) Then came  the not funny ending. I'm sorry it went so bad. I would have loved to have an appointment with that particular doctor.

Back to the rhogam, it's not something I'm 'taking'. Had the last shot after my last child in 1991. It's a shot they give you right after giving birth, if not you might never be able to have children again. It kills the antibodies you make, which might attack a future fetus. The problem is that rhogam is made from human blood. And they weren't able to screen it back in the days.

Update on Izzie, it was kind of an Izzieish reply I got. Here it is:

Dear Marcia:
Sorry for late reply. Thank you for sending me the information about your liver condition. Our treatment is aiming to control the liver inflammation, that is to normalize the enzyme levels and to hold or reverse the fibrosis caused by the liver inflammation. Your ALT was 136, which means that your liver is actively inflamed. Your other lab figures were fine and HCV viral load was high.

Therefore you do need to have treatment to control the liver inflammation and prevent the progress of the liver fibrosis.
If you want to use our Chinese herbal treatment, please find out whether Denmark Custom allowed the herbal supplements to be mailed in from the USA.

This is kind of making me move away from the herbs for the time being. I don't know, but I think it would be wiser to tx first and use herbs in recovery phase. That's just my feeling, I like to also go after my instinct. I don't know, if I was not a bit too enthusiastic about this in the beginning. I don't want to start messing around with my blood counts etc. It might show something which is not corresponding to the actual picture. Am still trying to find out all the options and combinations, but tx is a must for me. I really want to try get rid of this virus. Sitting around waiting for much more advanced meds than available now? It's obviously not gonna happen before maybe sometimes after 2015. Apparently for every year you wait, you lose 1-2% chance to respond to treatment. I don't wanna lose %. My kids need a healthy mom, especially since they never really had their dad around. They only have me.

back to Izzie, I wrote back to him , asking if he would advise to start treatment before having biopsy, or after, or in combination with tx, if the herbs could interfere with tx meds. I kind of like precise answers. So am waiting for that response.

As to ALT, normal range is between 10 - 45, but 45 is by no means normal. The actual NORMAL is around 20 - 30, that's what the experts say. Anyway my ALT is 3 times ULN. But ALT doesn't really mean anything, there are people out there with normal ALT and they have cirrhosis. Check out Dieterich's video on www.hcvsupport.org. It's called 'Why I Should Get My Hep C Treated Now', very interesting. It gave me a lot of insight.

I contracted HCV sometime between 1978 and 1998, whilst living in Indonesia, so it's not acute, it's chronic. I could not have gotten it within the last 10 years. Looking back, I have had symptoms for quite a while. The chronic fatigue set in in the end of February. Since then, I've practically been in bed or hanging around at home, dragging myself around. Just go out now and then, but can't walk for more than 1/2 hour. Lost about 4 kg in the last two weeks. Can't afford to lose much more than that. Have a good appetite and cook myself nice vegetarian organic food every day. I don't know what all this means, but time will tell... I do a little exercise every day.

Take care, Mike. And go and bang a bit more on the floor.. ;-)

[Trish77]

Sometimes there are reasons for the questions.  African Americans respond differently to treatment than do Asians than do women than do men, etc. I bet that applies to a number of things.  You got me on the religion but then maybe there are different religions that are known to refuse certain treatment regimens.  But hey .. I might skip that one too.

When I read your story, first thing that crossed my mind was that Dr. Dietrich was laughing at the idiosyncrasies of people.  He might have walked into the room with a big grin on his face and said to you "so you're giving my nurse a hard time, eh?"  You never know.  

As for people not responding because they simply don't cotton on to your sense of humour .. might be a little something like having a life that doesn't revolve solely around answering your posts.  (Yeah, okay .. that was a direct hit.  Can you take it?) I've been meaning to get back to you but between the people I'm already trying to keep up with on email and falling behind on, other people who are posting and who I feel I need/want to respond to, working, taking courses and with my other involvements and responsibilities on the side.. oh .. and a little thing like treatment to fit into the mix ... I guess you just haven't been getting your due attention.

Hm... guess you aren't the only one who gets rubbed the wrong way by people, eh?

There's a good Canadian word for you...eh?  Still meaning to answer your post but I just got in the door from working, then two back to back meetings and still have to shove some food down my throat so that I can take my meds.  I'll get back to you.

Trish  

[mike716]

Hi, Marcia. Thanks for your good wishes. Yes, I had a pretty good day today, probably because I didn't go out and didn't have to deal with people and the world at large, especially the New York world. Every time I come back to NY it seems like it's gotten crazier than ever here. Everyone looks coo-coo. I probably look coo-coo to them, too.

You said: "don't you think Dieterich was laughing at the nurse?" , which got me thinking that I must have misinterpreted the whole episode. You're right, I'm sure. I was crazy to go storming out of there. I just don't respond well to a lot of fool questions. Maybe I should call again. But now I feel embarrassed.


You're right about getting to Mt. Sinai being a challenge. I'm not used to the East Side. I don't know my way around there. It's a whole other world from the West Side, which I know pretty well. But, to tell the truth, after living in Argentina for four years everything here in the States seems weird to me.

That's a very funny line, "talk a lot for calling", instead of "thanks a lot for calling". I'll have to remember that one. Use it on those people who, when you call them, they do all the talking. Great line. It's too bad all of us HCV+ people can't get together and have a real coo-coo fest. You know, trading misstatements. That'd be a scream.

Sorry I misunderstood you about Rhogam. I get it, now. You think that was might have infected you, because it's made from blood and they had no HCV screening then. Like transfusions. Maybe you're right. Is there literature about people getting HCV from Rhogam?


Now about Dr. Zhang. I kinda liked his letter, especially the part about "aiming to control the inflammation, that is to normalize the enzyme levels and to hold or reverse the fibrosis". I believe there is a possibility that you can do that with herbals. Maybe it's just wishful thinking on my part, but I tend to believe it.

So if Zhang, or whatever his real name is, has got something that'll do that, it might be worth a try. I agree with him that it's important to control the inflammation and prevent the progress of the fibrosis. I want to try and do that myself. Diet must be important. What you eat has everything to do with the liver. And I am convinced that there are plants which have natural medicines that can help.

That said, you're right that you wouldn't want to interfere with the antiviral treatment or mask any test results while you were in treatment. So your questions to the good doctor Zhang are appropriate. They are the same ones I've been asking myself, and the reason I haven't started taking any of these herbal remedies yet. So I am very interested to hear what he says about that.

On the other hand, if there is an herb that can really bring down inflammation and stop the advance of the fibrosis, I for one would do it regardless of when and if antiviral therapy. But maybe not during it.

Regarding new medicines, the trials with protease inhibitor sound very good. Being genotype 1b has me pretty depressed. All that suffering from antiviral side-effects I've read about, for 48 weeks or even longer, and only about a 25%-30% chance of eliminating the virus (because of my age). It's not a pretty picture. But the trials with protease inhibitor appear to up the percentages a lot. New hope arises for us 1b.

By the way, did you say which phenotype you are? (If you did, I apologize. My short-term memory is gone.)


I fear you are right about ALT. Although they say the normal range is 10 to 40, I also read that 0 is what it should be, because the only way that alanine aminotransferase, which is made by hepatocytes, can get into the blood is when those liver cells are destroyed. So having any ALT in the blood is bad. The more, the worse. That's how I read it.

AST in the blood isn't great either. And when the AST gets higher than the ALT... well, we won't talk about that, agreed?

Sure, there are people with normal ALT who have advanced disease, because although the virus has been knocking off liver sells at a low rate, it's been at it for a long time. It's one of those rate/time functions. My brother, who is a mathematician, probably has a differential calculus equation for it.

Thanks for the URL to Dietrich's video. I'll watch it as soon as I send this. Although seeing him is gonna make me feel even worse about running out yesterday. I wish I could keep my head and be cool, but I've always been a nut.

How can you be sure when you caught the virus?

I'm really sorry to hear how tired and draggy you feel. I don't think I could handle that, I've been such an active person all my life. Going to the gym and ice skating are the center of my life now that I'm retired. If I couldn't do those things, I think I'd go crazy fast. You are very brave to be able to deal with it. I admire you. I mean it.

I've lost weight, too, Marcia. Ten pounds in the past two months. I don't know if it's from the virus, from being depressed, or because of the change of diet. I've changed my diet radically since being diagnosed. Now I eat nothing but fruit, whole grains, and a few boiled vegetables. I kinda like this stuff, actually. I had a big bowl of brown rice an hour ago. It was delicious. I eat a lot of grapefruit, too, because it's very antioxidant. The only thing I really miss is the wine. I've always been a wine connaisseur. Drank a bottle of Bordeaux a day when I lived in France. Didn't do my liver a whole lot of good, I'm sure. But no alcohol, says my doc, so no more wine. Is life worth living without wine? I will be able to answer that question soon.

Ya gotta exercize, Marcia. As long as you're still moving you're not dead, is what I always say. That's the law, which can't be wrong [wink].

Talking of which (exercize, I mean), I think I will go and bang on the floor a while. My neighbor below me thinks it's okay to do DYI every day in an apartment building. This guy was in Vietnam, or so he says. Must of gotten a shell fragment in the gazong. When he really gets going, he's hammering and sawing all day. Then I wait until he's gone to bed and I start pounding on the floor over his bedroom with a toilet plunger, so I don't mark up my floor. I can hear him snarling down below me. Gives me a lot of satisfaction. After a good session with the plunger I can sometimes get to sleep without any Lorazepam at all.

Nighty-night, and keep the chin up. We're gonna beat this pesky virus, you and me, and then we'll meet up in Copenhagen and have a glass of Bols. On me.

Mike

[mike716]

Hi, Trish. Gee, you're leading a hyper-active life for somebody on antiviral treatment. Either you're a pretty tough cookie or treatment isn't so horrible as I was led to believe. Maybe a little of both, huh?

Sure, I know all the questions on those hospital forms aren't so dumb. Maybe if they hadn't started with the religion one I wouldn't have gotten so frosted. I thought, "Do Seventh Day Adventists have lower response rates to antivirals?". Then, when the nurse asked me how tall I was I couldn't resist feeding her my line: "What's it to you?" I fancy myself kind of a funny guy, see? Only she wasn't clued into the dialogue, which was what really distressed me. Anyway, I was late for the public session at Sky Rink. Can't miss my ice skating, now can I?

I'm sure you're right about the good doctor Dieterich. Too bad I got ticked off. Story of my life. I have a bilious nature, haw-haw.

Not sure what you're on about re people leaving the list. They're free to do whatever they want. I don't care. And everyone has been very kind to me here. I got lots of answers to my more serious posts. I don't blame them for baling out when someone like me starts writing two-hundred-word posts. But I can't resist the temptation to do so. I haven't had anyone to talk to about this thing until now.

Sure I can take it, Trish. Fire away. But don't forget that the forum program is configured to automatically delete epithets. I let a four-letter word starting with c and ending with p slip out, and my post had **** in its place. So don't hit on me too hard or the message won't get through.

Sorry, but...what was the Canadian word? You lost me there.

I hope you had a nice dinner. I had brown rice with carrots sauteed in my own special liver-enhancement sauce made up of grapefruit peels, lemon rinds, and the milk of silybum marinarum. Mmmm...

Mike

[Marcia2202]

Hey, good morning. (it's 8:15 am here) You got me ROF again.

I agree with you that many ppl in NYC look coocoo. But I kinda like it. Don't feel different. You know, I feel like I'm part of the alien community just arrived from planet Mars, mingling without being recognized. As you can see from my name, I am partially marsian ... martian... marcian ... however you spell it, they didn't teach me that at home.

If I was you, I's call them back and make another appointment. not the Martians ...  Just tell them you were not feeling well and it was too overwhelming yesterday. I know that one of Dieterich's main concern is that out of 100 ppl infected only 10 actually end up getting treatment. But you've probably already seen the video.

To Izzie, I just found something on www.hepctrust.co.uk on TCM. Always find it good to read some 'Official sites' talking about herbal meds. In the Q&A section hey say:

Chinese herbs for side effects of treatment

Q If you have already started interferon/ribavirin treatment, is it safe to take Chinese herbs for the side effects. Do Chinese herbs help with side effects and might they interfere with the effectiveness of the interferon treatment?

A Certainly from my experience clients derive tremendous benefit from Chinese herbs and acupuncture. This can help them with fatigue, night sweating, thirst, nausea, diarrhea, skin rashes, headaches, flu like symptoms etc. It is essential to consult an experienced registered practitioner and to be sure of the quality of the herbal supplies. Provided careful consideration is given to all aspects of the client's case history then Chinese herbs are safe. I have not witnessed any of my clients treatment with interferon or ribavirin being lessened by the utilisation of Chinese herbs. In fact the experience of myself and my clients is quite the contrary.

By the way, it's a good informative site. Very thorough and neutral.

My phenotype????  Hmm... let me see the definition of phenotype on Wikipedia... Haven't come across that word, yet.  
Ha, ha, ha,  I guess this is another one of your jokes...

  genotype      +  environment + random variation =  phenotype
yet unknown   +  Mars&DK     + dunno                =    Biston betularia morpha carbonaria

I guess that's what it is. I like that one .... The second one of the moths.... I guess that's what I will look like on tx...

Anyway, I'll get my genotype result sometime next week. Wouldn't astonish me if I was 1b, as it is the most common in Indonesia...where I lived for 20 yrs and got hep c as a souvenir

I eat kind of the same way you do, Lots of veges and brown rice. Miso is great. Kelp in thin flakes sprinkled over the rice. That's what I'll have for breakfast.  Have you seen the book 'Healing with Whole Foods - Asian Traditions and Modern Nutrition' by Paul Pitchford? It's like a food bible. It's awsome, really. I have been cutting down on fruit and salads a lot, as I was eating to much raw stuff. According to  TCM I am Yang deficient accompanied with coldness and dampness(mucus). Eating accordingly has helped me almost clear up my sinuses in two weeks, been fighting with it for 1 1/2 years. But if you have a acces Yang, you need the raw stuff. Anyway, I had gone to a Chinese doc to get a Chinese diagnose, to be able to eat accordingly. It was quite amazing how she could diagnose me without me telling her much. I still have freezing feet all the time. It must be the incompatibility between Mars and DK. The moth syndrome... Gosh, I don't know what's in the apple I'm eating. Or is it the hep c????

Back to the rhogam ... ca 100 woman were infected from the same batch of rhogam fabricated in Ireland back in the days .... it became a big scandal...

I think we should start celebrating now. Celebrate life, with or without illness... I hope I'll still be laughing when I find out about my genotype. Am preparing for the worse. but I count myself lucky, as I have a superb support group. My hubby is an angel and so are my kids... And then there are all you beautiful ppl here on the forum.... Yes, we'll beat it ... but I'll pass on the Bols ... Haven't drunk a drop in years, haven't smoked and haven't eaten any meat. I think I'll keep it like that... We can have grapefruit juice instead ... :-)  

Unfortunately I can't bang on the floor, our neighbors are sooo nice. Can't bang on the wall either, the one next door are nice too.

Hope the birds are gone ...

Okay, enough horsing around... Mike, hang in there. When I found out about the illness, I took it is a time of reflection for me. Life is so fragile and we are so damn attached to it. For me it shows me that there are things more important than what I usually prioritize. It made me go more into myself and my spiritual practice. In the end, however much family or little family and friends we have, we are alone. Maybe not lonely, but alone. We come alone and we go alone, and it's up to me what to do with that.  So, am I happy? Yes, in spite of this crazy disease... Not gonna let this one get me down ... I'm sure tx is gonna be hard, at least I prepare for the worst... And I'm determined to try to stay positive... I've had the best example in my life, my own Mother. She died from leukemia 4 years ago and I nursed her the last 1 1/2 years. It was an amazing experience. She was so brave during her illness, so gracious and so loving and thankful until the very last day, when she couldn't speak anymore. So touching. I will never forget that... That is because she was calm and balanced inside, accepting her illness... So this is what I'm trying to do, accepting my illness, but trying to to throw it out the back door, if I can.

I hope you'll have a good day today...

marcia

[jmjm530]

Mike: Look, a number of hepatologists told me to go have a biopsy done and quit fooling around...
--------------------------------------
I think that's the best advice anyone could give you, and I wouldn't wait too long, especially considering your age which in and of itself is a strong independent predictor of advanced liver damage -- at least according to a recent study which I was unable to dig up at the moment.

As to the rest, first I'd do the biopsy like the docs suggest.

All the best,

-- Jim

[mike716]

Hi, Jim. I think you're probably right. I'm committed to the endoscopy on May 5th, but regradless of the results of it I am going to ask for a biopsy. As a matter of fact, I already have a commitment from the chief hepatologist at the University Hospital in Buenos Aires to do a biopsy for me if my own hospital won't.

However, I still believe that the new test, FibroTC, is better than all the others, even than biopsy, and if I can talk the poeple who do it, in Spain, to collaborate, I will do that as well as the biopsy. The more info the better, that's how I look at it.

I won't be surprised if these tests turn up cirrhosis. But I don't believe (or maybe just don't want to believe) that I have advanced disease. I still don't have any symptoms, and all my blood indicators, except the bilirubin, are low. Surely there would be some recognizable malfunction of liver functions if I had advanced cirrhosis, no?

Anyway, biopsy and the FibroTC should give me a good picture of the situation. The only real question for me, I think, is whether to go into traditional antiviral therapy in Buenos Aires, or come back to the States and try to get into a trial with Telaprevir or another one of the protease or polymerase inhibitors. At 64 and with g 1b, I'll need all the chemical help I can get.

Mike

[jmjm530]

Sounds like a plan and an endoscophy sounds like a good idea irrespective of the biopsy.

Curious though --  since I'm assuming you're in NY now -- why not just biopsy with one of the two doctors previously mentioned ? You'd be in and out of the hospital the same day, as it's a relatively simple out patient procedure, and it would give you an additional point of contact with one of the NY Doctors who could then supervise things in Buenos Aires should you decide to treat there.

If for some reason you prefer not to biopsy in NY, I would make sure that not only  the biopsy protocol in Argentina are up to par, but that whoever does the biopsy has done hundreds if not thousands -- as a practiced hand seems to be quite important when a very long needle is stuck deep into the body :)

Because biopsies are very common in the States, you should get that kind of practiced hand on request, especially in a city like New York. Not sure about how frequent they do biopsies in Argentina.

The "FibroTC" scan sounds like an interesting addition, but I couldn't find much info on it and wonder how much comparative data is available. Do you have any links?

Without the comparative data, it might be hard to get the kind of useful information you want. As you probably know, another non-invasive device (actually more non-invasive since Cat Scans have radiation) is Fibroscan, currently used in parts of Europe and now  in FDA trial in the United States.

-- Jim

[mike716]

Hi, Jim. I'm glad you think the endoscopy is a good thing to have done. Frankly, I've been a little unsure if the hepatologist who ordered it really knows what he's doing. He's kind of young, and I didn't have a very good first meeting with him.

Yes, I'm in New York for three weeks, ending next Thursday, when I have to go back for the endoscopy/colonoscopy preps. But I'm afraid I didn't have much luck with Jacobson and Dieterich. Jacobson couldn't see me because he's too busy preparing for a conference, and anyway he charges $700 for a consultation, which I won't pay. Dieterich agreed to see me for a reasonable fee, but I got nervous waiting and answering too many forms and ran out. I sent him an apology and still hope to see him before leaving. But I don't think I can handle the price of a biopsy here. I've got no U.S. insurance.

I hear you on the biopsy procedure in Buenos Aires. I'm going to ask straight out who's doing the biopsy, before I let them touch me. No students! If they won't agree to stipulate a practiced biopsy surgeon, I'll have it done privately or at the University Hospital. I know there are risks and I don't need a hemorrhaging liver (or other organ) on top of the hepatitis.

Are most of the biopsies here in the U.S. done with ultrasound guidance, do you know? If I was sure that was standard procedure, I would request it in Bs As.

Here are some links to the new FibroTC test:

1) http://www.ncbi.nlm.nih.gov/pubmed/18098299?dopt=Abstract
2) http://www.hcvsinfronteras.org.ar/index.php/2008/01/25/mtodo-para-cuantificar-la-fibrosis-sin-necesidad-de-biopsia/
3) https://www.isotrol.com/web/contenido?pag=/contenidos/capacidades/subseccion_soluciones/Fibrotac

1 is an abstract to the trial article published in Hepatology. That's the best one to read, but pretty technical. 2 is in Spanish and is a news article that came out in February in hcvsinfronteras (HCV Without Borders, an international HCV website that's pretty good, especially for new discoveries). 3 is the info sheet from the company that's commercializing the computer program that does the analysis of the CAT scans.

I guess the reason there's so little on it in English is that it's so new. But the study behind the Hepatology article was a large multi-center study, and the results were very good. I posted a color computer graphic analysis of a tomography slice, which I copied from the Hepatology article, on my home page in this website, if you want to take a look at it. The colors correspond to the F-stage of the fibrosis/cirrhosis, as indicated on the side of the graph.

My hospital in Bs As bought a Fibroscan apparatus, but they haven't set it up yet. I think they are just too busy with patients. It's a major hepatology center in Argentina and a lot of people with liver problems go there. They have around twenty hepatologists working there, and there's a transplant surgery department as well. I think they're pretty up to speed, but they don't have money in Argentina for funding trials and so there's nowhere to get any of the new add-ons like Telaprever.

Maybe I shouldn't bother you with this, but can you give me a read-out on some of my blood markers? Even though I've asked a bunch of doctors about them, I'm still not sure whether they're good or bad. Here they are:
- Total bilirubin 2.2 mg/dL
- Direct bilirubin 0.60 mg/dL
- AST 43 IU/L
- ALT 56 IU/L
- GGT 85 IU/L
- Serum ferretin 298 ng/mL
- Alpha-fetoprotein 8.5 ng/mL
- Platelets 156,000/mm3
- Creatine 1.10 mg/dL

I know the AST and ALT are higher than they should be, but maybe not too much so far. What worries me the most is the high bilirubin, but I'n mot sure exactly what it means. Also, the Alpha-fetoprotein is at the top of the normal range (0 - 8.9), and that's the marker for hepatocelular cancer.

Anyway, have you got any ideas about interpreting these results?

Mike

[Trish77]

Back again.  There is so much in your posts that I had to wait until I had a quiet moment and enough mental energy to address your comments the way I wanted to!

Re you being a jerk re your comment on HCV only affecting the liver.  Hardly.  Well, not for that anyway. ;->  You were simply incorrect.  You're clearly on a quest to do the very best for your health that you can and I felt it important to address that comment.  Not only for you, either.  Other people read these forums and I just felt it needed saying.  

You're in kinda rough shape from the sounds of it, aside from your HCV.  I'm sorry about your IBS.  I know a couple of people with that and it's not a whole lot of fun from the sounds of it.

I've been reading your posts re: your biopsy with interest.  His point is excellent, on asking the qualifications of the person doing the procedure.  I think that will alleviate alot of your concerns if you know the person doing them has plenty of experience.  That counts for alot.  I'm hoping you get your results soon and that, of course, they are not as bad as you are concerned they may be.  

Re: the dating game.. well I don't play it well, because I don't follow the rules.  That's all I'm gonna say 'bout that.  I think the games you play in the Haight are a little different ... thanks for the heads up on the "crabs", eh?  I think I've got that covered.  

"You say: "there are no CAM therapies that are known or proven to CURE Hep C. Only to mitigate the damage." Well, isn't that all combination antiviral therapy does for the millions who don't achieve SVR? "

So turn that around and apply it to the ones who DO achieve SVR.  CAM is left wanting in that equation, it doesn't register.  CAM has a zero proven cure rate. That is all I'm saying.  SOC has a cure rate of 40 - 50% for geno 1 and even higher for Geno 2 and 3.  So if I have a choice of zero cure vs. a shot at it and I figure I can tolerate treatment, then I'm definitely going after it.  I'm geno 1a/1b and I'll take those odds.  Don't get me wrong.  I'm not saying CAM is of no benefit.  I simply wanted to make it clear that no cure was available there.  

Interesting thread you started on complementary medicine and I think it's a very worthy discussion.

Coca Cola and Swift go on supply and demand, don't you think?  Witness the preponderance of "low fat", "green", "high fibre" products in the stores - whether they truly live up to their billing or not.  

Glad you like my metaphors .. you'd love my allegories then. ;->

Regarding treatment not being as bad as yuu've been told because of my "hyperactivity" .. I know you're not basing the whole of treatment experience on my own situation .. that's just you being a smarta$$.  Treatment is as individual as we are, unfortunately.  It would be easier if it was much more formulaic across the board.  

As for my own treatment, 'll just tell you this.  All my pursuits are non-physical at the moment.  I've cut right back.  I even use the escalator at work far more to conserve physical energy where I can.  I used to run and I don't, now I walk to work and that's the most of it.  I'm nauseous and getting progressively more tired as the weeks go on but I'm hanging in there as best I can and keeping up with as much as I can manage until I simply can't anymore.  You made comment about my dinner .. how's noodles and soda crackers grab you? :)  It was all I could stomach.  I don't want to tell you what I ate last night.  It was there, it was the only thing I was even remotely interested in and that was dinner.  It's not like that all the time, sometimes I'm in the mood to eat  and I go with it.  Having said that.. I have to say that I've been pretty lucky with the side effects so far.  I've had the luxury of learning to "roll" with things as my kids would say as I haven't been laid out from the start like some people...I'm getting the gradual introduction to it.  I need to keep my mind busy and I need to feel productive so these activities of mine are my anti-depressant for now it seems.  So these things I do are like another form of meds .. a CAM of another kind if you will. :)  

I'm interested in this procedure in Spain .. I don't think even at those costs that the average bear could manage them .. but it's an interesting alternative for some people.  I know they have dental trips to China, etc. and that's a bit more realistic when you pay out of pocket for dental.  Certainly something to tuck in the back of one's head.

The Canadian word was "eh".  Geez, thought everybody knew that one. :)

As for CBC .. as simple as Complete Blood Count. Wasn't intending to be purposely obscure or high-falutin', just with all your forays into medical procedures and research, I thought you would get that one.  Apologies.

I probably missed some things but I think that's all I've got for this one.

Good luck with your pursuit of answers on your health, Mike.  There's probably support groups in NY for the times when you're back in town.  I enjoy coming in this forum but I also attend a small support group here where I live.  Nice to talk to people face to face about this too.

Take care.

Trish

[mike716]

What's wrong with noodles and soda crackers? I eat it all the time.

How do you make it? Do you mix them together, or do you crumble the crackers on top?

If you're nice, I'll give you my own secret recipe. For now, just a hint: use egg noodle twists instead of penne, they strain dryer so the crackers don't get soggy as fast. :]


Mike

[Trish77]

I crumble the crackers on top and then mix them in along the way as I eat the noodles.  It's all about the ratio.

I'm left wondering how nice I have to be to get that secret recipe .....  like...I'm ALREADY nice ... aren't I?  :)

Take care.

Trish

[Mary4now]

Just remember Oatmeal ( I buy organic and as whole as I can cook within 30 mins.) is very good for your liver.
Also be careful of the foods that contain alot of iron.  I dont know about the Kelp and if somehow the iron content is safer or what.  I'm just wary about iron especially being post menopausal.

[mike716]

I agree on the oatmeal. I practically live on it. Oatmeal and farina with raisins for breakfast, oatmeal and brown rice soup for lunch, and grilled oatmeal veggie burgers for dinner. Mmmmm...

Re iron, I read that it's baaaad for hepC:

"Despite substantial scientific evidence, however, few physicians implement iron-depletion therapy before beginning antiviral therapy. This partially accounts for the high failure rate of conventional drugs in eradicating the virus (Boucher E et al 1997; Martin-Vivaldi R et al 1997; Tsai NC et al 1997)." Linked at: http://lefcms.lef.org/protocols/infections/hepatitis_c_01.htm

I am looking around for something that will remove iron from the body without blood-letting, the standard procedure for reducing iron. I found this:

"Lactoferrin, a subfraction of whey protein, may be especially beneficial as an adjunctive treatment for serum iron overload in hepatitis patients. Lactoferrin is a potent antioxidant, antiviral agent, and scavenger of free iron. In addition, lactoferrin is directly involved in the upregulation of natural killer (NK) cell activity, making it a natural modulator of immune function (Yi et al. 1997; Ikeda et al. 1998, 2000)" at http://www.smile.org.au/OtherMedicalTherapies/HepatitisC.htm

Cheers!

Mike

[mike716]

You couldn't be more right, Trish. Ratio is everything. I've tested a lot of noodle-to-cracker ratios and have found the one that suits me best. Nevertheless, on occasion I vary it. Noodles with crackers most of the time, yes. But once in a while crackers with noodles. Wakes up the taste buds, if you know what I mean.

You certainly are nice, Trish, and it was not my intention to suggest otherwise. Golly, no. But for me to impart any of my secret recipes, much less my patented noodle-cracker recipe, well, I need to have a very special relationship with the recipient of my largess, the sort of relationship that can only be the result of a high confidence/time quotient. I trust you will understand and not hold this against me.

To compensate for my caution in this case, I can offer you without compunction any one of my less-cherished formulations. Oatmeal-farina-almond pudding? Canned tuna-bulgar wheat-pitted olive stew? Or my grapefruit-cream cheese-rye seed flan? Name it, it's yours.

Mike

[Trish77]

Okay Mike.. this is important.  Salted or unsalted soda crackers?  

And yes, definitely yes, mostly crackers with noodles but sometimes.. oh baby .. noodles with crackers.

Yeah... I get your drift on the "result of a high confidence/time quotient" factor.  And as appealing as your recipe sounds .. I do have limits. I guess that means my no sugar fruit salad secret recipe that everyone loves cause it has this lovely sauce that tastes so good .. is going back in the drawer.

But ooohhh fun ... a booby prize!!  choices, choices .... I love olives .. like tuna ..bulgar is too close to vulgar .. LOVE oatmeal and almond with it sounds yummy ... like grapefruit alot ... cream cheese is very good ..

Okay, okay!!!  I've got it!  I'll take Oatmeal-tuna-pitted olive-grapefruit-cream cheese- stewed pudding flan.

Otherwise, I'll be very grateful for the oatmeal-farina-almond pudding, thanks. :)

I gotta drop into bed before I get myself in trouble here.....

[mike716]

Here's some more stuff I found about iron and HCV:

- Hepatic Iron Concentration as a Predictor of Response to
Interferon Alfa Therapy in Chronic Hepatitis C. GASTROENTEROLOGY 1995;108:1104-1109

- Lactoferrin Markedly Inhibits Hepatitis C Virus Infection
in Cultured Human Hepatocytes. BIOCHEMICAL AND BIOPHYSICAL RESEARCH COMMUNICATIONS 245, 549–553 (1998)

[D977]

Hi Mike

ThaNks for the research the more i read the more i like!!
D

[D977]

I used to take clostrum before i went vegan years ago so lactoferrin is in there naturally but you can get extra added. I recall the powder being stuck to the roof of my mouth. Any leads on pills with it?
Also rebuilds the healthy flora
D

[mike716]

You mention "salted" crackers in this forum? My, my, you do have a lot of courage.

M.

[Trish77]

You don't know the half of it.

T.

P.S. I will look forward to the recipe. ;->

[mike716]

No leads yet on where to get lactoferrin, but I'm working on it. It's going into my "preserve the liver from further dammage" cocktail, together with silybin-PC, Vit E, PPC, fish oil/flax seed, glycyrrhizin extract, and naringenin. I'm thinking of running my own personal research study, on myself. All I need is to talk an M.D. into giving me orders for blood tests whenever I want so I can check on the effects and doses. Hard, but maybe not impossible, huh?

M.

[mike716]

Oatmeal-farina-almond pudding, huh? Sheesh! Now I gotta go out and get some almonds to test the ratios. I shudda kept my big mouth shut.

M.

[copyman]

i would insist on the liver biopsy first. seems they are doing things backwards where you are. doctors usually do a biopsy first then if cirrhosis is found they do the more invasive endoscopy procedure. best of luck to you

[mike716]

My hepatologist probably lost a coupla patients with varices and he's paranoid. I figure, let him look for varices if he wants. Anyway, is an endoscopy really more invasive than a biopsy? I've heard some blood-curdling stories about biopsies, whereas I never heard of anyone bleeding to death from an endoscopy. But what do I know?

The thing is, they're going to do a colonoscopy on me with general anesthetic anyway, so why not go in from the other end, too, while they're at it?

Last reason: I already got on my horse about biopsies and am in a fight to get them to do a FibroTC (tomography-based) and/or Fibrotest (special blood markers) instead of biopsy. What am I gonna do now, go back and say: "Do a biopsy on me or else"?

They already figure they're dealing with a nut case. Why make it any worse? I hassle them too much, they might tell the Health Plan people to invoke the "pre-existing condition" threat. Then where would I be? I don't have insurance in the U.S.

I know you're probably right. But I have to look at the whole picture. See what I mean?

M.

[Trish77]

Mike:  Last reason: I already got on my horse about biopsies and am in a fight to get them to do a FibroTC (tomography-based) and/or Fibrotest (special blood markers) instead of biopsy. What am I gonna do now, go back and say: "Do a biopsy on me or else"?
--------------------------------------------------------------------------------------------------------

Well, yes.  Well not quite like THAT ...haven't you ever heard that adage."it's not what you say, it's how you say it"?   How about "would you please do a biopsy"?  You can tell them you'd still like to pursue a Fibro CT and it looked like the best option at the time and that the thought of a biopsy had you pretty freaked out at the time so you were looking strongly at alternatives...however, you've kept an open mind, kept reading up on it and you're thinking that a biopsy is starting to look pretty good.  IF that's how you really feel.  

This is about your health, yes?  I get the endoscopy thing...what the heck.  Then you know where you're at with varices, nothing lost there.  If you really want a biopsy, then suck it up and get it done.  Just a thought.

Good luck.

Trish

[mike716]

What you say makes a lot of sense. But you don´t know Argentines.

Anyway, I can get a biopsy done whenever I want over at the med school hospital. I already talked to the head of hepatology there about it, and he gave me a scrip for a pre-biopsy blood analysis (TP-KPH [?], prothrombine time, and platelets). So I think I can just waltz over there and have a biopsy done pretty much any time I want. The trouble is that then I´m sort of double-crossing my hepatologist at the Italian Hospital.

I know this all sounds like a lot of eye wash, but you gotta understand I´m living in the third world...

Re the oatmeal-farina-almond pudding, you just toss a handfull of almonds into your oatmeal-farina (75%-25%) bowl along with the sultarina (pitless) raisins. That´s after mixing in the honey (liquid) and the soy milk, natch.

I´ve been experimenting with healthfood store oats-from-the sack, but decided to go back to Quaker after burning a nice stainless steel pot while posting to this forum. It´s too far to run back and forth between my computer and the kitchen with these slow-cooking oats And my smoke detector ran out of batteries.

Mike

[Trish77]

Yeah....I felt like I was double-crossing my hepatologist when I headed off for a second opinion to another one in Toronto and then landed in a drug trial and had to come back and tell him .. um .. I won't be treating with you and here's why.  But .. it was best for ME.  Anyway.  I've said enough on this and it's in your hands.  I do wish you good luck with whatever you decide and I hope you keep us posted with how it's going.

Thanks for the oatmeal-farina-almond pudding directions.  :)

One thing you don't want to do .. is run out of batteries.

Take care.

Trish

[Mary4now]

I was sort of freaking about getting the biopsy, but heard it was not a big deal,, and it really wasn't they gave me something to relax me, and it succeeded, then they found the spot w/ the ultrasound and in 5 seconds it was done, then I had to lay on my side for almost 2 hours, but I was soooo relaxed.  

[Trish77]

Mike:  What you say makes a lot of sense. But you don´t know Argentines.

Anyway, I can get a biopsy done whenever I want over at the med school hospital. I already talked to the head of hepatology there about it, and he gave me a scrip for a pre-biopsy blood analysis (TP-KPH [?], prothrombine time, and platelets). So I think I can just waltz over there and have a biopsy done pretty much any time I want. The trouble is that then I´m sort of double-crossing my hepatologist at the Italian Hospital.

I know this all sounds like a lot of eye wash, but you gotta understand I´m living in the third world...
----------------------------------------------------------------------------------------------------

Okay ... I did a "hey, wait a minute" ... and you know what?  Yep.  It sounds like a lot of eye wash.  Big brassy Queens New Yorker who walks out on one of the top hepatologists in New York and you're throwing out that excuse?  That you don't want to offend your Italian hepatologist?  What about the head of hepatology at the med school hospital who put his/her time into you and gave you the pre-biopsy scrip?  You're starting to rack them up as it is so why not just get it done.  Seems you're going to offend someone somewhere if you haven't already.  Maybe you're just blowing smoke because you're chicken, like you said.  I get that.  If it was New York, I'd drive down and hold your hand and if I could afford the airfare, I'd fly down to Argentina and do likewise. Well..okay...I'd more likely be cracking one-liners, I tend to do that in those situations ... just ask my ex-husband what it was like after his emergency surgery for the infection in his testicles.  If they could find him.  And that's all I'm gonna say about that.

Anyway.  Yeah, it sounds like alot of eyewash, among other things.  Maybe it's time to just get 'er done.  It's really the only test that will accurately tell you fibrosis level, even with it's own room for error.  Then you'll know exactly where you're at and you can get on with it.  It puts a "period" on the sentence so to speak, you know?  It focalizes all that energy and thinking in the appropriate direction.  And you seem to have plenty of that so why not channel it where it will do the most good and why not find out where that is?  Endoscopy can happen when it happens.  If you really can get a biopsy done any time, then get it done.  

Yeah.. .I know .. I don't know Argentines.  Just get 'er done, Mike.

Trish

[Marcia2202]

Hey Mike, you're back... You're lucky... I would love to be able to get a biopsy done now. Am so sick of waiting, have still not gotten the results for my GT. They are still striking in DK and everything has slowed down..... It could go on for another three weeks... So consider yourself lucky and get that biopsy! You lucky man.  :-)

Best wishes, Marcia

[Trish77]

Hang in there, Marcia.  It took me ten months to see the specialist after my diagnosis and then 2-1/2 months to get my genotype, etc. after that!!!   Hope it's over for you soon.

Trish

[Marcia2202]

Oh, that's excruciating! Over 1 year! They are not allowed to do that here. If the hospitals cannot stay within the time limits set by the government, the government has to pay for treatment in a private hospital or another EU country. It's just that my doctor says he cannot refer me to the hepatolgy department, before he has my GT. I will call him tomorrow, to ask him to do it anyway, maybe the GT can follow at a later date. I hope it will be possible. Thanks for the kind words.

Marcia

[Trish77]

Honestly, Marcia .. it makes sense to me that your GT is there first.  My appt with the specialist would have been much more productive if that had been done first and we would have made the most out of that appointment.  As it was, he told me some things about Hep C and then sent me for a blood test, making for a very excruciating 2-1/2 month wait.  With your GT in front of him, you'll be able to talk concretely about treatment options.  Just a thought.  Take care.

Trish