Looking for ideas

[deesmom]

My son contracted Hep C thru blood transfusions at 3 weeks old. It wasn't discovered until he tried to donate blood at 17. He's 32 now, and recently his doctor removed him mid-way thru his 3rd round of interpheron treatments. Over the course of the last 15 years his liver levels have always been very low. That is why, the doctor decided to remove him from the treatment. Are low levels a good thing? They tell him he is in Stage 3 of the disease, and probably has been since it was discovered at 17. We are considering the possibility of taking more of the dandelion root as he has been taking it all along. Any suggestions? My son is rather frustrated at this point in his life, but he is still trying to do all that he can.

[dlr2007]

It's always good to meet fellow bikers on here! Riding really helps clear the head and get all this cr@p off the mind too...
  By the way, I meant to tell you that you're a great Mom to be helping your son out so much- I'm sure it helps him a lot. His Dr sounds a bit narrowminded maybe- unless he's tried every combination of Pegysus (spelling?), Interferon, Ribaviron, and a few others I can't think of- then it's not true that there are no other meds out there for your son. Knowledge is power, and that's what you're gaining. Best of luck- keep us posted! And keep ridin'...
Best wishes & prayers,
Dee

[deesmom]

Thanks for the response. When my son gets his PC back I'm going to let him know about this website. Course, who knows, he may have already been here. I'm going to encourage him to look for another doctor in the Pittsburgh area and have him get another opinion. His doctor told him there where currently no other meds out there for treatment. But that's for us to find out right? My son is also hearing impaired and LD so it takes some extra push as he takes his doctors words literally. Oh, BTW, we have a Harley too...*VBS*

[dlr2007]

Hi again- That's great that you son's biopsy was the same in 2005 as it was 10 years previously- that means that the damage has not progressed much. So your son must be doing a good job of taking care of his liver! Of course, until we get rid of the Hep C virus, there is always the possibility of it "flaring up" and causing new damage even if we're living healthy. That's why it's good that your son is keeping up with his Dr appt and bloodwork/biopsies.
  I'm no expert, but it sound like your son wasn't responding to the most recent tx and that's why his Dr pulled him off. Same thing happened to me- I had no side effects, felt fine, but my Dr said the tx just wasn't working. The reason I would want your son to get another opinion is that there are new combinations of meds out there today that can help the hard-to-treat people. Your son should not be being treated with the same old stuff that didn't work for him again and again. There are even trials he may be able to get into with the newer drugs- other members of this board know much more about it than I do. Maybe someone even knows of another hepatologist in the Ohio area. So you have lots to think about! You'll learn so much here- I'm glad you found this site. I'll be watching for your posts to see how everything is going for you and your son.
  Best wishes and prayers,
Dee

[[email protected]]

see the comment I made for Deesmom concerning milkthistle... I sent it to her accidently .. it was meant for you...

[[email protected]]

PS  the milk thistle made him sick because it is cleaning the liver from built up toxins... Please see a good naturopathic doc... and e-mail me... I know I can help.

[[email protected]]

Please see a naturopatic doctor and get your son on a clean living regimen ... it will help... It brought me out of the that nasty pit and I am fine... please do it!

[deesmom]

Thanks all so very much your advice. He has been seeing a hepotologist. It was that doctor's decision to take him off the interpheron. This was the middle of the third time around. Meaning he was in the midle of his 3rd 48 week treatment. The first 2 times did nothing to reduce the virus. My son handled the treatments well, with little to no side effects. Over the past 15 years he has watched his diet, misses a cold beer, and tries to get as much rest as he can. And yes, his AST/ALT levels have always been low. HIs first liver biopsy in 95 was no different than the one they did in 2005. The Doc he has been seeing is from the University of Pittsburgh Medical Hospital. Pretty reputable I've been told. I live in Ohio. We had a stab at the Cleveland Clinic, but it was the commute that would interfere. I don't think there was another hepotologist in the P-burgh area, as I have suggested he get another opinion. I'll keep you all posted. Thanks again, so very much for all your good words

[meki]

I'm with Jim on this one. With the little info provided - not knowing what the docs saw --- or the complications, I would find a second opinion. Or maybe even a third.

I don't know enough about alternative therapies to guide you on this. The only thing I took that wasn't prescribed was Emergen-C stuff - and heck - I don't know if it helped, but it tastes alright - doesn't give me gas - and has vitamin c. LOL!

Anyhow - please consider getting more opinions on this. GOOD LUCK!

Meki

[GrandmaA]

Sorry I had the wrong webite for Dr. Zhang, it should be sinomedresearch.org
If you buy his little book about his herbs he will give you a 15 min. free consultation from New York once you send him your sons labs. Then he will tell you which herbs he needs. You don't take the exactly the same ones before tx, as while on tx.

You need to save copies of all his labs for his records. At the top right corner of the standing order (or lab slip) there's a place where the doctor can write "copy to patient". I get copies of all my labs that way.  

[GrandmaA]

If your son can get on Dr. Zhang's herbs he can wait for the better meds coming out in 2009 (that should cut the duration of treatment in half). Dr. Zhang can be found at sinomedresearch.com
His herbs are expensive, but what cost your way of life? They eliminate the inflammation and keep the liver from getting worse and will stabilize his liver. I have been taking them for over 4 years. I never could have got through tx without them.  I will be done in 3 or 4 weeks. I was a stage 3 also. I'm 65 years old and I worked full time until 2 months ago.  

[jmjm530]

Your son's case sounds a bit complicated, and as stated, the advice both of you have been given seems questionable. My suggestion would be to make an appointment with another doctor for a second opinion. Best person for this would be a liver specialist (hepatologist) as opposed to a GP or Gastroenterologist. Hepatologists can usually be found at your larger, teaching hospitals. If you tell us the general area in which you live, maybe someone can come up with a name. As a stage 3 -- if indeed that is accurate -- your son should be at a minium under the direct supervision of a liver specialist who most probably will suggest treatment either with the current drugs, or perhaps some of the newer drugs. Normal liver enzymes unfortunatly do not mean everything is OK, and dandelion root, while it may help some, doesn't sound like the answer to the bigger issues.

All the best,

-- Jim

[dlr2007]

Hi- I'm sorry to hear about your son having Hep C- I have it too. This site is great- there are much more knowledgable people here than myself, but I wanted to welcome you. It can be difficult to wait for a response, especially when you really want an answer.
  Why did your son's Dr take him off tx (treatment)? Was he having bad sx (side effects)? Or were his blood counts getting too low, as in platelets, white counts, anemia? And you mentioned he has done 3 rounds of tx- did you mean he was on his 3rd shot of this tx, or was this his 3rd time going thru interferon tx? This would all make a difference- and a big issue is, how experienced is your son's Dr? Is he a gastro or a hepatologist? Your son may need a very experienced Dr to sort things out- I've learned from this site that the success of tx really varies with the Dr's willingness to tailor the meds to the patient. A Dr that hadn't treated many Hep C cases may not have the expertise to do that.
  If your son has stage 3 liver damage, it would be a good idea for him to keep on top of current treatments. This is usually a pretty slow-moving disease and lots of people here have Stage 3 damage, so it's not the end of the world at all. But he should really be proactive about his options for getting rid of the virus and also keeping his liver as healthy as possible. I don;t know much about dandelion root- I take milk thistle, which you can buy in pill form at health food stores. I also take alpha lapoic acid, zinc and selenium. A healthy diet with lots of fruits, veggies and whole grains- and not too much fat, salt or sugar- is good for the liver. And of course no alcohol! Also he should be careful of any meds he is taking, make sure they are liver-friendly.
  If by low liver levels, you're referring to your son's AST/ALT's, it is good that they are low but doesn't mean that his liver isn't being damaged. You're taking a great step in coming to this site- you'll learn a lot you can pass on to your son! And the support and caring here is wonderful. Keep reading and posting and I'm sure your son will be just fine. There are lots of ideas for staying healthy with Hep C on here- and also new drugs coming out with better cure rates. Sorry for the long post but I wanted to tell you all I could.
Wishing you the best, Dee