Since July I have been exploring all options. Here is what I know about my diagnoses...My liver enzymes are AST 75/Alt 76, genotype I, HCV RNA of 2.3 million and one small liver cyst w/no splenomegaly. After researching the side affects and the response rate of peg interferon and ribavirin I decided to try other options. Since taking supplements and homeopathic meds my viral load has dropped from 2 million to 5 hundred thousand. MY QUESTION, IS IT NORMAL TO SEE VIRAL LOADS DROP WITHOUT ANY TREATMENT AT ALL. My doc told me not to get to excited that I still have a treatable virus. SECOND QUESTION, WHAT SHOULD I EXPECT MY DOC TO BE DOING? ANY SUGGESTIONS FOR THE BEST HOSPITALS, DOCTORS IN THE STATES...PREFERABLY IN THE MICHIGAN AREA. My first visit was at U of M Ann Arbor which will continue seeing me if I opt for treatment. Thanks for any/all help or suggestions.
I haven't started treatment due to the fear of the side effects. I go in to a panic just thinking about them. My doc also told me that they don't know the long term effects of treatment either. It could bring on some other terrible illness for all I know. That just sets the panic mode off more. I am being treated at Duke University. Since I've put treatment on hold, my doc wants to see me every six months. He is going to do another biopsy in a couple of years. Did you get vaccines for Hep A and B? I did.
Good luck. If you can recommend any books on naturopathic/homeopathic treatment I would appreciate it.
There are no docs here. Mostly folks with hcv in various stages of treatment (tx) or not. Viral loads can bounce around before tx, it's not unusual at all - probably normal. In addition, the test that counts the number of them can also vary. Since your body's immune system did not eliminate the virus (15% do) you have chronic hcv. Although it's very good to be healty, eat well, and take appropriate supplements those things will not eliminate the virus. The only current cure is interferons and ribavirin. There are other meds in development - but not ready for prime time yet. If you decide to wait, your doc should keep an eye on your liver with CT's and/or Ultrasounds for gross assessment. The condition of your liver, for fibrosis and cirrhosis, is best revealed by a biopsy - which is not as bad as it sounds. You should do liver-friendly things which includes not drinking.
I was on the fence for treatment 2 years ago so decided to get rebiopsied in 06 to see if it had progressesd. This 2 years gave me ALOT of time to do research of tx, and read all that I could about combination tx. When my 2nd bx came back & revealed I now needed the tx, I had SO much fear & anxiety about it I about drove myself crazy.
Once I started tx in 7/06, I found that the fear & anxiety about it was actually worse than the tx itself. (for me anyways)I'm glad I am on it now, and with each wkly shot, I consider myself 1 week closer to killing "The Beast"
Good luck in the decision that you make.
You mentioned Duke. When I went to see the liverhead at the U of Miami we talked about a lot of stuff, including leading hep docs. He mentioned one at Duke, John McCutcheon (spelling might be off) - you probably know the name. When they have drug trials there is a grand poobah running the show. This big mucketty-muck calls the shots for all the other locations that are also doing the same drug trials. For all the VX-950 trails Dr. McCutcheon is the crowned prince. If you are shakey around peg/riba, it may be a good idea to cozy up to him and his staff.
He is my doctor..Dr. McCutcheon. He did my biopsy. He's a nice guy. They asked me to do a clinical trial for VX950, but I didn't qualify because my enzymes weren't elevated twice in a six month period. I'm sure they will have other trials that will come up.
I'm doing well. I re-start tx in a few weeks. The doc suggested that I treat sooner than the vx stuff I might be eligible for in a few months. The next phase of trials for vx will start in the the next few months - around Jan, and some of the criteria may change since it will be with a bigger population. So you may qualify if the criteria changes. Stay close to those guys, it could be your ticket out.
My husband was VERY nevous about the side effects of riba/peg-intron treatment. He is now 5 weeks into treatment, and his side effects are minimal-a little tired, a little emotional. I think many, many people have mild side effects, and so do not post here, as they don't feel such a need for support.The unlucky with severe sides post here in greater numbers, as they need more support, and so it begins to seem EVERYONE has a bad,bad time, which is not accurate. My husband read so many scary postings, he almost chickened out of treatment, but then decided to give it a try. We are both very glad he did. Best Wishes, JoAnn
Thanks, I have my house on the market now and hoping it sells soon. As you know, this is not a good market to be selling. I plan to call Amy again today. I don't care if I have to live at UM for a month as long as they take me. LOL How are you doing?
Well, I just got off the phone with Amy and she still has my name on the list for up coming trials. However, she said there are no trials down the pike for 2's and 3's any where in the country as of yet. Because they say 2 and 3 are easy to treat, sure right. It seem's to be a losing battle, maybe I should go to Europe for their trials as 2's and3's are common there. LOL
She also said that they may not take me because of my thalassemia' can you believe this, I'm screwed either way.
From what they said at UM, VX for geno 1 relapsers will start around early 2007. For other geno relapsers a little later but still in the first quarter of 07. Since they did not have their full instructions for the next phase yet, that was a guess but they've been around the block with many trials so they are educated guesses. So, your Feb appt with Schiff could be very good timing. That's why you should check in with Amy every couple of months. And, as the other folks who are in current vx trials have indicated, the first several weeks of vx trials require attendance at the trial site for meds, testing and evaluation. So, the sooner you can move farther south the easier it would be for you. Assuming, of course, that your condition and specifics make you eligible.
Nice to meet you. Dr. McHutchinson is great! He has the best bedside manner of any Doc that I've been to. I couldn't believe how young he looks. He has no problem with me taking SAMe and the other one that I take is Milk Thistle. Maybe they aren't cures, but they do help the liver. He has the best bedside manner of any Doc that I've been to.
I worked in Pharmaceutical Development, and scientist would synthesis herbs to make medicine.
How long have you been going to Duke?
I'm not sure about the studys there on 2s since I am a 1.
Side effects to the thyroid are NOT necessarily permanent. They can regenerate when you go off treatment. I don't think mine will personally cause it's really dead from the IFN but - not everyone has to stay on the Synthroid for the rest of their lives and I am seriously hoping to get off it after treatment.
Well, at least you know what long distance tx is like. Try calling that Dr. Nelson in Gainesville, he did viradimine trials - maybe he's got an idea. And, there's always Doc J. Although, I'd wait out Schiff and enjoy no tx for a while. Are you stage 1 or 2 - I forgot.
I am about to do my 2nd sht tomorrow and it'll be 1 week on Rib. as well. It may be too early for me to chime about the very bearable effects of tx. 1st shot produced flu symptoms for about 2 hours...they were just annoying since I was expecting to be hit with a sledgehammer: slight lower back ache, and slight chills...the following days nothing, really. Ditto with Ribivarin. (I am knocking so hard on wood you must be able to hear it)I, too, was very concerned about side x to the level of not doing tx. I also was on naturopaths..milk thistle, SAMe, L-Acid, NAC, vit. C, E, plus green drinks, Wheat Grass, gluten free and dairy free diet(feel great to boot)etc. That, and quiting drinkning altogether, no more social cigerette-smoking either, and exercising, and my counts dropped: my AST's and everything else are normal, and ALTs went from 120 to 51. I guess I could have waited for "better" treatment because I am G3 stage 1, level 2 VL is >7 X 10^5,.... I became infected either in 82, or 92, either way 24 or 14 years, it has not progressed that fast; and I was drinking heavily before I met my wife five years ago. However, I DO NOT want to live with HCV inside of me and realized that I have a higher chance of gettig rid of it to undected levels if I undergo treatment NOW. I do not want to infect anyone and am tired of watching everything I do: razors need to be away from kid, etc. Especially, and if you will excuse me for being so vulgar, I cannot love my wife the way I used to, we miss the intimacy, canot kiss if she has cut, etc. and we do not like to practice safe sex..Headrtails
I also see Dr. McHutchinson at Duke every 6 mos. He's a very respected and well known researcher in this field. I was also eliminated from the current 950 trials based on a very occasional heart arrythmia. I've been on herbs for 4 yrs. and he has no problem with that fact whatsoever. I personally know of a doc in Texas who believes certain herbs definitely have certain benefits such as reducing liver inflammation and he's written articles on such. He even suggests particular herbs for patients not ready, able or willing to tx. with the current meds. We all know they're not a cure and don't take them with that expectation, however many diseases and conditions have been helped with herbs and many cultures have been treating with herbs for thousands of years and I believe that the Western medical community is starting to open their thinking to this fact.
I think I will eventually, but I am leaning towards waiting until my daughter gets in college. That is if I stay at Stage 1/Fibrosis 1. My doc feels I have a good shot at it if I continue to practice a healthy lifestyle. If things start going down hill, I will begin sooner. I actually don't think about the HCV as much as I did when I was diagnosed in the Spring. I have faith in my Doc. and feel that I am in good hands with him.
However, when treatment day does get here, if I don't have sides, I would still want to come back and help the newbies and visit the regulars here.
Having my new job has helped me so much!! I think my old job was part of my worrying problem.
Thanks everyone for all your information and personal experiences. My mission is to find a doctor/hospital that I am comfortable with as UofM gave me the all or nothing approach. Until then I will continue to live healthy, take my milk thistle, holy basil and a few others and pray for the best. Also, I would love to stay in touch as new and better treatments come to life. We are all in this together and I wish each of you great success in living each day to the fullest.
i'm sorry if I seem to be correcting every word you say, really that has not been my intention and I"ll keep an eye on it in the future. It's hard to know what someone DOES or DOESNT realize when you only know them "online" and since I don't really have the brains to memorize what I've written to who...maybe I am just a bit too anti-herbs and things like that and it comes across that way.
But now that you've mentionned it I will notice it in the future and avoid it like the plague!
I'm VERY sorry if I caused you ANY discomfort. It truly was not EVER my intention to do so AT ALL. I hope that you will know that and accept the apology.
I'm just not really smart enough to always remember what is going on - and didn't want to see you mislead by bad information.
Believe it or not when I first found out I was diagnosed I spent a LOT of money on vitamins, supplements and herbs. They are all in my closet now collecting up dust. I just didn't really know better and I'd just about made it a fulltime career trying different combinations. I don't want anyone to repeat the mistakes and waste the money like I did. If it wasn't for me being corrected several times in here - I doubt seriously I'd be making it today.
I've been seeing Dr. McHutchinson for about a year. Saw his name in an article that was posted (ironically) on a "herb" site and it was mentioned in the article that he was at Duke so I did a little internet research on him and made an app't. since I live a little over an hour away. I wanted to see him because I didn't have a Hepatologist following me, only a local Internist and felt I needed a liver specialist. I also asked him about 950 (this was last year) and he told me that he would be coordinating the trials which were to begin the following winter. As it turned out it was more like late spring/summer. I found him to be very easy to talk to and he doesn't push tx. which is what I liked and as I said he was open to the herbs. I have another app't. with him in Nov. at which time we'll re-evaluate. Best of luck to you.
Best of luck. I go back to see him in Feb. Please keep in touch and let me know how it goes.
He is great. He's at Duke in North Carolina. When I was diagnosed, my primary suggested getting in to see a Doc. at a University because they tend to be more "cutting edge." Dr. McHutchen does a lot of research on Hep C and does conduct trials.
I sure hope you breeze through tx! It takes 3 or 4 weeks for the Riba to build up in your system, I didn't feel the Riba effects at first either. Took about a month.
That is great our shot was easy, mine kick my arse every week for 2 days, last week's shot ws the first "easy" shot I've had and I am on week 54 or there abouts so consider yourself lucky!
Dr. McHutchinson is a world reknowned (sp?) researcher in Hep C and has conducted numerous studies world-side. You can try calling the Gastroenterology clinic at Duke Univ. (Durham, N.C.) 919-684-6437 to make an app't. to see him specifically. I'm sure he treats people from all over the globe, he's pretty famous in his circles. You could probably also google him and get more info. Keep us posted!
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