Questions for Doc who says, 'Wait-n-Watch'

[miked]

Background: 1b diagnosed April 2004; Started tx in May with 3M copies; 3log drop @ 12 weeks but stopped @ 36 weeks because viral load increased(partial responder).

Referred to Dr.Kwo, Chief Hepatologist & HCV clinical trials @ IU Med. Center.  Bx says less than Stage 1 & no inflammation.  If I choose, Dr. Kwo will offer me daily INF+RBV,or IDN-6556.  His advice is to wait-n-watch.

March 30th is my next appointment I'd like to ask the right questions with a wait-n-watch approach:

1.)Does viral load matter?
2.)High iron was what led to my diagnosis.  It went normal with tx but will it rise again?
3.)How ofter should ALT/AST be tested?  What if they rise?
4.)What's the stats for fibrosis progression?  I'm 47.
5.)Any CAM recommendations?
6.)What if tx "angered" the HCV demon and it goes nuts?

Do you guys have additional questions that I should ask or comments on the above?  Any opinions about a wait-n-watch approach?

Thanks for all of your support and help.

Mike

[PhilaGuy]

I can answer the first one.  In short, a higher viral load may mean you can transmit the virus more easily, and can mean less success in  terms of treatment.  There seems to be no relationship between viral load and amount of damage, however.  Some with very high viral loads can have no damage, while those will low loads can have extensive damage.

[texasgal]

My doc just told me yesterday that elevated AST/ALT levels in patients with Hep C will fluctuate possibly in high numbers throughout the whole treatment process and even after.  He said for all of us Heppers to not worry unless the levels were in the higher 800's to 1,000's.  Mine were that high when I was first diagnosed in August 04.  I became a non responder and since then the levels have gone all the way down to the 60's and back up to the 100's.  Now, I know it is one less thing to worry about unless they go crazy.  Hope this helps.  I was pulled off the meds at 3 months due to non response.  I am awaiting the results of the viral load since I stopped meds.  Hopefully, it stayed the same, but who knows?

[Tallblonde]

You wrote: "What if tx "angered" the HCV demon and it goes nuts?"


That's an interesting idea that, quite frankly, I've wondered about too.  My VL has been holding steady at a nice low level and my liver damage is minimal ("no significant fibrosis" -- according to the biopsy report).  I also wonder if treatment could "anger" the virus and make it "fight back".

Aren't all living organisms programmed to fight for survival when they're under attack (unless they're French -- sorry, couldn't help it).

Has anyone who failed treatment found that their VL increased beyond pre-tx levels?  

Susan

[Micro2]

YES!! my viral load increased into the millions. after 1st year on combo we dropped riba and switched to peg mono. the load went from 15 into the millions. after 4 mos. of peg mono it increased higher. then we went on combo with increased riba and even though the drop was significant, I had to stop because hemoglobin dropped to 7.8 (even with procrit). I will have a new biopsy monday from a new hepatologist.
Anyway...pre tx load was 800k or so. I even asked the doc..who pissed off the virus!!!

[honey1616]

I think the reason it comes back higher at the moment you stop interferon and have relapse is because your immune system is way down from the medicines you have been taking for months or even a year.  So naturally,,,it will take your body some time to build up immunity to start fighting back. The viral load fluctuates back and forth.

[cuteus]

another theory could be that other tissues that might be harboring the virus, such as the scar tissue in the liver, are being forced to relaease the "hidden" virus into the bloodstream.  It could be that the meds re entering the areas where the virus is not circulating and "opening" up the door for it to circulate and be erradicated.   Just as interesting as the "angering" the virus theory, don't you think? given the studies that thorize compartmentilazation.

[cuteus]

amen to that, I think they actually show that they know how to think on their own and not worry about kissing US's a**.

[cuteus]

BTW, were you mentioning that things were rather slow at MH? This thread is an example of how things get "lively" pretty quick, on occassions. ;-] It just hasn't happened in a while.

[scruffy]

Susan,my friend-oops. (did'nt seem that bad at the time did it?)LOL frank

[Tallblonde]

If I slam on a few Republicans will that be an adequate mea culpa for you prickly pears?  C'mon!  Take a chill pill and have a good day!  LOL!

Susan

[honey1616]

Maybe the French know something more then us. We have been very fortunate as Americans,,,to not have fought a war on our homeland. Where France and the European nations have fought many. A friend of mines,,,his father was telling me just 2 days ago about his experience in World War 11,,,,that one thing he never had to worry about was his family at home,,,he always knew they were safe.  However,,the europeans fighting a long side of him,,,never knew if their family was safe or if they even had a home to come home to.

[Laika]

I'm not interested in a slam on Republicans.  I'm interested in an apology for a bigoted remark.  Nice the way you turned it around--we're just TOO sensitive.  And the French...well, screw 'em, I guess.

[Tallblonde]

Hey, bigots are people too!  When you show a little more tolerance, Laika, I'll join you in a round of singing Kum-By-Ya.  

I'm glad we have you to police all off-the-cuff-remarks.  This board is sorely lacking in political correctness and I'm thrilled that you're armed and ready to turn that around, by golly.

I'll work on limiting critical remarks to:

1. Conservatives
2. Evangelical Christians
3. White males  
4. The United State of America

You'll find that no one ever utters a peep when any of the above are attacked.

By the way....I'm of French descent on my mother's side of the family.  Thank you for saving me from myself!  LOL!

Au Revoir!

Suzanne

[ellissg]

I know a friend in Tennessee, a non-responder twice, who has a Viral Load of 30,000,000, almost no fibrosis, and normal ALT and AST. However, she does not feel well, and has a problem with fatigue.

[Laika]

I am deeply offended by the nasty joke about the French.  I am not French, but don

[Amerabrit]

well stated!

[Tallblonde]

On the thread below titled: "Dealing with the Crazies" you wrote last week (in message C25):

________________________

Laika wrote:

"Have you noticed how sleepy this forum has been lately? A little drama wouldn't be so bad."

________________________

Is that what this is about, Laika?  Using someone's benign joke to  stir up a little drama?  Very interesting.

Susan

[cuteus]

Mike Chevelle? lol, Je m' appelle Bardot,  gentil de vous rencontrer.

[cuteus]

i got to change the font size in my mac, lol, i am having a hard time reading what i write, pardon moi.

[kittyface]

You don't know me -- I've been lurking in the shadows reading.  I'm ready to come out of the keyboard and say HI!

Want to share my experience in the hopes it will benefit others.

I'm female, 51, geno 1, VL 11 million, contracted Hep C from blood transfusion in '82, felt vaguely ill for years, knew something was wrong but numerous docs could not diagnose 'til I went to a integrated medicine MD Dec 04 (yes, he actually uses herbs and chelation therapy when warranted) and he's funny as hell.  I cried when he dx me and said "what about sex?" and he turned slowly with a big smile and said, "kittyface, I'm just the doctor, I can't provide you with any sex."  Talk about some much needed comic relief.

Anyway. . .FibroSpect II test shows somewhere between 0-1 fibrosis and my enzymes are normal.  However, have been slightly ill consistently and catch every bug that flies around for 20+ years so decide to participate in trial of NM283 (polymerase inhibitor) plus pegintron.  The trial coordinator was VERY persuasive.  Landed in the ER first night vomiting so hard blood vessels in my eyes and face burst.  I was not pretty and that bothered me.  You Girlfriends can relate.

I quit the trial after one week due to fear of and unwillingness to tolerate sx -- I felt like a poisoned lab rat. I think it was the pegintron rather than the NM283 that really had me going.  The docs didn't want me to slip out of their precious study -- offered me ritalin and whatnot but my body balked at the thought of yet more drugs.  

I'm not writing to convey my medical history although I find it endlessly fascinating and hope you do too.  I'm addressing those souls who have decided to wait on tx and need something to help abate symptoms of low grade fever, fatigue, swollen glands, general malaise.  I've tried many things over the past 20 years but recently started taking Shegoi (Oy, it's a nice Jewish herb)(and that's not an anti-semitic remark, BTW, b/c I'm one half Jewish, the top half) anyway, back to Shegoi.  (see how good I feel?)

Shegoi is the patented toxin-free version of the herb chapparel which has anti-viral properties that fight the Epstein Barr and herpes virus.  I figured it would work on Hep C and it does.  After a week on this stuff I felt such a sense of energy and well being I was skipping in grocery stores and striking up conversations with perfect strangers.  I am not kidding.  It should be taken with lots of greens and chlorella to cleanse virus die-off in the blood.

To get info about chapparel go to http://larreamed.org/  It states that people with liver disease should not take it BUT Shegoi is chapparel with liver toxins removed.  My funny MD gave it the OK.  Just google Shegoi for the website.  It costs about $39 for a bottle.  I'm not a distributor but I bet you can find one.  

If you want more info on how to dose I'll be glad to help.  For now must go skip.

[Tallblonde]

Ok, you got my attention.  But first, I want to welcome you to the board and thank you for sharing your story.  The trip to the ER with busted blood vessels sounds horrifying.

I went to the www.sehgoi.com website and it has a lot of fascinating information about this herb.  I do have some questions for you:

1.  How long have you been taking it?

2.  How quickly did you begin noticing changes in your general health?

3.  Has taking shegoi had any impact on your viral load or liver enzymes?

4.  Have you had any side effects related to taking it?

5.  What dosage are you taking?

6.  Can this herb be taken by people who are on treatment?

I'm part of a relatively small minority here that isn't treating, so I'm always on the lookout for alternative approaches.  Again, thank you for sharing your experience.  Best wishes to you.

Susan

[Tallblonde]

Well, Kittyface, as alluring as the claims for Shegoi are, I doubt that I'll be trying it any time soon.  I've spent the past hour researching it on the Internet and nearly every search result leads me to information on how to become a distributor.  I can't find a single example of clinical research that tested the safety, efficacy and tolerability of this product.

I have a personal rule that I use when it comes to alternative therapies.  I'll only put something in my body that has been studied by researchers at reputable institutions.  I'm not interested in being a lab rat for natural therapies.

But, boy, I certainly understand how tempting it is to try something like Shegoi when someone like you write such a compelling testimonial.  I hope anyone who reads what you wrote will also consider my rule regarding reseach before they take the plunge.

Susan    

[Tallblonde]

Here's what the National Institute of Environmental Health Sciences has to say about it:


"It continued to be widely used as a treatment for rheumatic disease, venereal infections, urinary infections and certain types of cancer, especially leukaemia until its sale was banned in North America due to concern over its potential toxic effect upon the liver. There have been a number of cases of acute or sub-acute hepatitis attributed to the use of this herb and so its internal use is not recommended until further research has been carried out.

A number of cases of acute toxic hepatitis have been attributed to ingestion of a nutritional supplement derived from the leaves of the creosote or greasewood bush (Larrea tridentata), commonly known as chaparral. Use of the supplement appears to have led to serious liver injury and fulminant hepatic failure requiring orthotopic liver transplantation. Chaparral, which grows wild in arid regions of the Southwestern U.S. and Mexico, has been recommended in nonscientific publications for use as a "free radical scavenger" or "antioxidant" to treat a variety of conditions including hepatitis and alcohol withdrawal. Chaparral tea, made from the leaves is also a traditional American Indian medicine. Although the toxin in chaparral has not been definitively identified, a possible active ingredient is a potent antioxidant, nordihydroguaiaretic acid (NDGA), which can act in low doses as a lipoxygenase pathway inhibitor but at high doses as an inhibitor of cycloaxygenase pathways as well as cytochrome P-450 activity in rats.

Based on the information above, one might conclude that chaparral-induced liver injury is more likely to arise and/or to be more severe in former alcohol abusers or other people with preexisting liver disease."

[honey1616]

Tallblonde,,,,Glad you posted that for any newcomers that might see.  I did some checking also and this does not look like any of us need to take.  Kitty might be skipping but I bet you,,,she is a distributor. Kitty,,,care to share?