http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2?format=rss Tribe.net. Local Connections http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#d081a8a0-8a16-4a47-8974-5fc9f89a1dfb Sorry to interrupt the thread for one moment Charles, but Pixie.....HI! It's Tracey (Betty) who belongs to the Nomads group. A pleasure and a surprise to see you and welcome. I think 'Nomads' is a great group....so friendly and helpful... Mon, 28 Apr 2008 07:28:06 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#d081a8a0-8a16-4a47-8974-5fc9f89a1dfb Tracey 2008-04-28T07:28:06Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#d4a41bee-961d-4667-8e5b-783acb9591d9 YES Charles, pain is not good. Get thee to a hepatologist. If nothing else, s/he can refer you to someone if he thinks it is something else. Primary care mds don't keep up on the latest and greatest. So, you were a junkie. Big whupp. Me too. I say it loud, and I say it proud, because I'm clean and sober. I even write down long I've been sober and when they give me attitude, I say, with a big smile, did you notice that I have decades of sobriety? My hepatologist was in such a hurry when we met for the first time that she cut me off, she obviously couldn't care less. Sometimes I forget that their reaction bothers me because I let it. Easy to say, but it took me 15 years to get there. I thought the va took care of you period. My Dad was treated for cancer because he was in WWII vet, and he didn't get cancer in Naples in '44. If you don't have medical coverage, there are lots of studies that are free and the two big drug companies have programs for people w/o money. If you're still using or drinking Charles, that's a problem indeed. I'm not moralizing and I don't agree but chances are they will treat someone with a healthier life style first. The studies wouldn't take take you for sure because they need to judge apples to apples and maybe oranges but not, for example, apples to lettuce. What is a possibility is if your hepatologist in AK isn't up to speed, you can get a consult with someone who is, a la pixie's consultant, and they can run your treatment through your hepatologist. There are all kinds of ways of getting treated if that is a possibility and if you decide that is the way you want to go. I have a friend on the liver transplant list so frankly I think if there is an opportunity to kill this mfer before it gets that bad, I'm all for it. Acupuncture helps with symptoms but there are three pages of herbs that are contraindicated for hcv so if you decide to look into chinese med, let me know and i'll give you some info. Sun, 27 Apr 2008 21:55:18 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#d4a41bee-961d-4667-8e5b-783acb9591d9 Marie 2008-04-27T21:55:18Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#0f3070a0-8620-4ae9-bdd4-97107386f105 Hi Charles I tried to find some info...but as you say there aint much about....I did find this tho. Response to treatment in patients with HCV genotype 6 may be at an intermediate level between that seen with genotype 1 and genotype 2 or 3. The optimal duration of treatment (24 vs 48 wk) for HCV genotype 6 is unclear and currently is under investigation. Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University Medical Center, Palo Alto, California. Now I do know a Hep Consultant and can email him see what he knows, not that its gonne help you there ..But might put your mind at rest...Have you had a biopsy.?......If so whats your score...?.....Px Sun, 27 Apr 2008 15:16:31 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#0f3070a0-8620-4ae9-bdd4-97107386f105 pixie 2008-04-27T15:16:31Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#876f886a-9691-4db3-866c-f1e4ca19e8a8 They have not indicated any length of treatment, I think the rareness of genetype has the Dr stumped as I was told my type was so rare in this area(and surrounding as well that University Arkansas Little Rock (which is the foremost Hep C treatment center here in Arkansas has never even been able to do a case study on my type6 Sometimes I feel they think if they ignore it either it or I will go away) As I stated before there is a lot of ignorance in my area and I guess a person with what most consider a druggie disease yes even the Dr refers to it as such is not high on the priorty list for medical care. Yes I am a vet but cannot tie this into a service related condition so so any assistance from the Govt is out of course. Lately I have had a aching feeling inside , my torso is sensitive to the touch (all over) and I have trouble laying down and getting comfortable. Is this a symptom of progression? Thank you. Charles Sun, 27 Apr 2008 12:52:33 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#876f886a-9691-4db3-866c-f1e4ca19e8a8 Charles 2008-04-27T12:52:33Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#2a84a2bc-8afa-446c-bde9-4dd22caa720b Hi Charles and welcome from me, I am also new here... Not heard of Geno 6 before, well I have but not known anyone that has this geno type.... I did however find this info about the strain of geno type you have Hepatitis C virus (HCV) genotype 6a is found in a restricted part of South East Asia, including Hong Kong, Macau and Vietnam. We determined the full length coding sequence of a type 6a isolate (EUHK2) obtained from a Hong Kong blood donor. The sequence of EUHK2 contained a single open reading frame coding for a polyprotein of 3018 amino acids, within the range of 3008 to 3037 for other HCV genotypes. The full length sequence of EUHK2 showed 30.3%-32.9% nucleotide (24.3%-29.4% amino acid) sequence divergence from genotypes 1-4, but only 27.7% (20.7% amino acid) divergence from JK046 ("type 11a"). These similarity values were intermediate between those of other HCV genotypes (minimum 28.4%) and between subtypes (maximum 25%). The close evolutionary relationship of EUHK2 with JK046 was further indicated by their grouping together by phylogenetic analysis. How many weeks treatment have they said you should have for this strain..?... I did notice you have a Gastro Consultant, would there be any chance of finding a Hep Consultant..?.....Gastro is not as specialized as a Hep one...Your Friend Pixie.x Sun, 27 Apr 2008 07:15:26 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#2a84a2bc-8afa-446c-bde9-4dd22caa720b pixie 2008-04-27T07:15:26Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#dce3a776-88f7-4f28-89cd-f0ccd6ef2bb3 He said it was genetype/genotype 6?? I am not sure of the wording but he said my particular type was not very common, I have had 2 biopsies one in early 2001 and the other in the other in 2006 when I had my gall bladder removed. I had flu like symptoms so my Dr ran a lot of tests and a liver function test was ran at that time since I was always tired she did a Hep C screen which turned out positive, the comfirmatory test showed my Hep C virus/RNA elevated at 71,890 international units per milliliter the second confirmatory test was 345,600 copies per milliliter. The gastro DR who did my gall bladder surgery told me I was not a candidate for treatment as my condition was not so bad that it warranted treatment, I do believe in light of the advice here I am going to make a appt with someone who knows a little bit more, I have been hurting a lot lately and need checked out. Thanks Sat, 26 Apr 2008 22:33:53 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#dce3a776-88f7-4f28-89cd-f0ccd6ef2bb3 Charles 2008-04-26T22:33:53Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#061119a0-d566-4b18-892d-a0bb6d1148a1 Hi Charles and sorry to meet you (in the spirit of having hepc) and glad to meet you! The biggest problem that I had and I've seen lots of people have it that they are seen, diagnosed and treated or treatment options given by a gastroenterologist or primary care. Mine told me for years that there was nothing I could do and that I should just wait and wait and wait. By the time I went to a hepatologist, my liver was in way worse shape and I was older etc. I went right on treatment and at a year out I was still clear of the virus. Tracey is absolutely right, liver function tests can mean any number of things or not reflect something that is going on and biopsy is really the only way to know the full extent of the damage, if any. I am sure that your doctor is a good person and acting out of good faith and the information that he has but that is the problem w/not seeing a hepatologist. Did your doctor tell you what strain of HCV you have? This is very very very important information. I have an extra copy of the book with the latest and greatest, if you want me to send it to you, send me a private em with your address. I'll write tons more later about stigma, which I sometimes like to call stigmata because after dealing with it for so many years, I consider myself a saint! Sat, 26 Apr 2008 15:26:07 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#061119a0-d566-4b18-892d-a0bb6d1148a1 Marie 2008-04-26T15:26:07Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#eae34724-2d19-4e92-962f-10d9cb5b476d Hi Charles...Like Mike, I would be suspect of your Docs diagnosis. It really needs a biopsy to check for liver damage. I'm in the UK and there is a stigma attached to the disease here too and very little awareness of it. I was referred to the Hepatoligist and after biopsy did the 24 weeks treatment. I would say get a second opinion as well..Your Doc cannot know the progress of your disease. I had Liver function tests that were all normal, yet still had liver damage. I did clear the virus two years ago and am still clear. All the best Tracey Fri, 25 Apr 2008 23:27:12 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#eae34724-2d19-4e92-962f-10d9cb5b476d Tracey 2008-04-25T23:27:12Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#6e683814-eb2c-4e20-8786-679a3651fb88 First of all welcome. I would be suspect of your docs view point as the lower the viral load the easier it is to eradicate (not a garuntee though) have you seen a GI or a Hepatologist? At the very least get a second opinion. In my experience not soon after I was diagnosed I was sent to a test for the then not on the markedt interferon Riboviran treatment ( before then they treated it with interferon alone. Here you will not be judged there are several ways to get the disease IV Drug use is but one. It must be hard to live in such a place that has that kind of ignorance. Fri, 25 Apr 2008 16:40:02 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#6e683814-eb2c-4e20-8786-679a3651fb88 Mike 2008-04-25T16:40:02Z http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#fef7ece8-be10-4f58-b1c9-770de60ef747 Hello all, I just joined and wanted to introduce myself , I am Charles first diagnosed with Hep-C in 1999. My Dr has told me that I have not reached the point that I need treatment, My wife has been urging me to see another Dr, as she feels he is not doing right by me at all. I live in rural Arkansas and most people here are very ignorant of Hep-C so I get shunned a lot for having what most pple here call the "druggies disease" Can anyone here offer me any advice? Thanx. Charles Fri, 25 Apr 2008 15:41:05 GMT http://hepatitisc.tribe.net/thread/38aa4ac3-3d31-462c-a3a0-75af92301bf2#fef7ece8-be10-4f58-b1c9-770de60ef747 Charles 2008-04-25T15:41:05Z