Hi Everyone

I was diagnosed with Hep C when I gave blood in the wake of 9-11. I contracted the virus through a needlestick while working in a hospital. I have genotype 1a with autoimmune antibodies. The good news, my biopsy was given a grade of 1/4 and showed that the high autoimmune antibody count is not liver disease but related to a possible other autoimmune disease (lots of rheumatoid arthritis, MS and Lupus in my family).

My question - to treat or not to treat? My Doc says treating is a good route but risks activating my autoimmune disease. Anyone else out there in this boat with me? Does anyone know of any good studies that could help me decide?

I'm babbling. Any help would be much appreciated.

hi anteek, a a very warm welcome to the board.myself i have had this since/82, but found out in/99. i have never done treatment, but eating nutritious foods, drinking lots of water,etc.has helped. to treat or not to treat was also offered to me in /99.i felt that i needed to learn more.you have come to the right site here, as there is alot of valuable info here, keep on reading the board, never feel uncomfortable by asking "anykind of questions here" folks are very carring and will share there info.best to you.
keep the faith, bless you...........mj

Maybe you should ask your doctor about Zadaxin. It is a drug that helps to super-boost the T-cell production and may be beneficial.

First of all, welcome to this board.
Always good to have a new face around the place.

You ask about treatment and autoimmune. Interferon treatment is contraindicated (as in: do not prescribe for this patient)for those with the autoimmune disease you have mentioned. The balance of probability is against a good result without activating (prematurely) the diseases you have listed. Your doctor has done his homework there.

This is of particular significance to you who is newly infected. You have to be careful about your self-care (no smoking, abstain from all alcohol and make sure you stay as thin and active as you possibly can)

Treatments, other than interferon, are still in the experimental stage although the marketing efforts have clearly begun.

There is no reason for you to try to access an experimental drug since you have no liver disease and no symptoms. I recommend waiting until we have a real cure that is both safe and effective. So far, we don't have that.

In my opinion, person newly diagnosed should not take any unecessary risks with treatment, approved or unapproved.

Hepatitis C moves slowly, when it progresses at all. Most people newly infected can wait and weigh future options, if necessary, while maintaining optimal health. This is not so with other disease, like some of those you have listed.

Someone once said that a lie can travel around the world before the truth has its socks on. That is true with a lot of the information (read: marketing) that you hear about the treatments on the internet.

Again, the autoimmune issues make treatmnt risky. In any case, recommendations for treatment make this decision somewhat premature for you anyway. I hope you and your doctor will investigate the autoimmune issues more thoroughly. Potentially, this can be much more serious than hepatitis C.

I hope this helps,

thanbey



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www.hcop.org (http://www.hcop.org)
preapproved by moderator1

Here is a listing of clinical studies which review several treatments and the very nature of multiple Hepatitis infection including HGV. This should give you a better understanding of where the medical community is today and what it has discovered.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Display&dopt=pubmed_pubmed&from_uid=12090542

Thank you all for your warm welcome and great information. It's wonderful to feel less alone and in such great company.

Thanks again!

Hello and welcome to the board. I too am type 1A and am taking the pegintron/ribaviron treatement. Although I've had it since 82, I am 38 and in pretty good health otherwise. With this I figured I'm the healthiest I'll be and so am best prepared now to try and fight it now.

With this, are there any new/updated numbers as to the success rate for peg/rib patients with type 1A? I'm sure that this number should be considered when making your decision as (it is my understanding) that different genotypes respond differently to treatment

Good luck.

Dear JHL,

Pardon me for this, but I see this type of answer frequently from people who give advice on patient sites and it totally knocks me over every time I see it.

Do you understand that inteferon is downright dangeous for certain patients with certain kinds of conditions or with medical histories that include specific past medical problems? For example, a patient who has had unstable heart problems (or who is at risk for same) isdefinitely NOT to undergo interferon therapy regardless of the percentages. There are a number of medical conditions that preclude treatment with interferon. And sometime, event he doctors are not aware of what they are!

A person, such as the person asking this question, who has autoimmune issues is, likewise, not a good candidate for interferon therapy.

It really doesn't matter what the expected results would be in a patient who ends up seriously ill from something else and it was entirely preventable.

If it wasn't for the fact that patients are led to believe that hepatitis C is so awful that it is worth any risk to be treated, I would say nothing. But, that isn't the case.

Interferon has its risks under the very best of circumstances, and it has really bad outcomes in certain patients who insist on treatment in the face of medical consequences that are much worse than living with hepatitis C ever could be.

best thoughts,

thanbey



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www.hcop.org (http://www.hcop.org)
preapproved by moderator1

Anteek -- Hi, and welcome to the board. Am very sorry to learn of your Hep C, but please read carefully what Thanbey posts. Although we can all banter around the pro's and con's of treatment, what causes what, what leads to what, and ponder the what-if's, she is in the know. And she has a solid background on the subject of Hep C. Some folks are treating because they are sick and/or have more serious signs of liver disease; some of us (myself included) are not sick and are self-treating without chemicals/drugs.

I was diagnosed also from a blood donation back in October 2002. I am very healthy, have had all the appropriate tests - liver (ALT - 19, AST 28), iron, geno typing (am 2b), viral load (am 18,900,000 per ml), liver biopsy (Grade 1 stage 0), and was offered treatment from my doc in March. I do not plan to treat now or anytime in the near future. Don't need to -- am not sick nor have any signs of liver disease.

The beauty about being healthy with no signs of liver disease is you have lots of time to wait for a bonafide cure. There are a lot of exciting things happening in this arena this year .... and the likelihood of a real vaccine/cure for this disease coming up within the next 10 years looks very promising. You can read current news stories on the subject from a variety of sources on the net.

Get as much info as you can - from a variety of sources. Arm yourself with knowledge. Like Thanbey says, no smoking, drinking, watch sugars/your weight - these will automatically have a positive effect on your disease.

I probably have had my disease for 30 years but have basically not had any alcoholic beverages for the last 18 years, as the man I married really doesn't like to drink. I am 5'4, weight 108 lbs. Have been watching my weight for years (low fat, especially). I really think the fact that I have no liver disease or symptoms has much to do with having little-to-no alcohol for years.

You have lots of time to treat in the future. Knowing you have Hep C and self-treating as previously mentioned is the first step to staying healthy. Chemical treatment is a very serious step. Listen to Thanbey on the subject. She has nothing but your best interests at heart.

You are family, here, Anteek.

It's ALL in the Attitude!

Diane

[This message has been edited by casperclaudee (edited 04-27-2003).]

Arthritis Rheum 2003 Feb;48(2):442-54

LJP 394 for the prevention of renal flare in patients with systemic lupus erythematosus: results from a randomized, double-blind, placebo-controlled study.

Alarcon-Segovia D, Tumlin JA, Furie RA, McKay JD, Cardiel MH, Strand V, Bagin RG, Linnik MD, Hepburn B; LJP 394 Investigator Consortium.

Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubiran, Mexico City, Mexico.

OBJECTIVE: To determine whether LJP 394 delays or prevents renal flare in patients with systemic lupus erythematosus (SLE) and a history of renal disease. METHODS: In a 76-week, double-blind, placebo-controlled study, 230 SLE patients were randomized to receive 16 weekly doses of 100 mg of LJP 394 or placebo, followed by alternating 8-week drug holidays and 12 weekly doses of 50 mg of LJP 394 or placebo. An assay measuring the affinity of the serum IgG fraction for the DNA epitope of LJP 394 identified a high-affinity population of patients (189 of 213 patients; 89% taking LJP 394 and 90% taking placebo). Analyses were performed on both the intent-to-treat population and the high-affinity population. RESULTS: Anti-double-stranded DNA antibodies decreased and C3 levels tended to increase during treatment with LJP 394. In the intent-to-treat population, the time to renal flare was not significantly different between treatment groups, but patients taking LJP 394 had a longer time to institution of high-dose corticosteroids and/or cyclophosphamide (HDCC) and required 41% fewer treatments with HDCC. In the high-affinity population, the LJP 394 group experienced a longer time to renal flare, 67% fewer renal flares, longer time to institution of HDCC, and 62% fewer HDCC treatments compared with the placebo group. In patients with serum creatinine levels >/=1.5 mg/dl at study entry, those taking LJP 394 had 50% fewer renal flares; no renal flares were observed in the high-affinity group taking LJP 394. Serious adverse events were observed in 25 of the 114 LJP 394-treated patients (21.9%) and 34 of the 116 placebo-treated patients (29.3%). CONCLUSION: Treatment with LJP 394 in patients with high-affinity antibodies to its DNA epitope prolonged the time to renal flare, decreased the number of renal flares, and required fewer HDCC treatments compared with placebo. The study drug appeared to be well tolerated.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12481401&dopt=Abstract

hi About time
and a warm welcome to the board.interesting post!
keep the faith, bless you...........mj

Hi MJ,

Thank you and God bless you too.

I have a feeling Anteek will find some interest in that Lupus study for maybe a family member and since Anteek requested clinical information.

The prior post on Hepatitis research has a wealth of information on how new studies have found further mechanisms of the disease and drug interactions.

Hi Diane,

Have you looked at Grapefruit Seed Extract (GSE) as a supplement? It might be worth asking your doctor's opinion.
http://www.nutriteam.com/gsewhat.html#hospitals

J Altern Complement Med 2002 Jun;8(3):333-40 Related Articles, Links


Erratum in:
J Altern Complement Med 2002 Aug;8(4):521. Reagor Lana [corrected to Reagor Lee]

The effectiveness of processed grapefruit-seed extract as an antibacterial agent: II. Mechanism of action and in vitro toxicity.

Heggers JP, Cottingham J, Gusman J, Reagor L, McCoy L, Carino E, Cox R, Zhao JG, Reagor L.

Department of Surgery (Plastic), School of Medicine, University of Texas Medical Branch, Galveston, USA. jphegger@utmb.edu

OBJECTIVES: Recent testimonials report grapefruit-seed extract, or GSE (Citricidal) to be effective against more than 800 bacterial and viral strains, 100 strains of fungus, and a large number of single and multicelled parasites. This study investigated GSE for antibacterial activity at varying time intervals and concentration levels and tissue toxicity at varying concentrations in an effort to determine if a concentration existed that was both microbicidal and nontoxic and in what period of time. DESIGN: Gram-negative and gram-positive isolates were introduced into graduated dilutions of GSE (twofold concentrations ranging from 1:1, through 1:512) for determination of bacterial activity. In vitro assays with human skin fibroblast cells were also performed at the same dilutions to determine toxicity. RESULTS: These tests indicated that from the 1:1 through the 1:128 concentrations, GSE remained toxic as well as bactericidal. However, test results indicated that at the 1:512 dilution, GSE remained bactericidal, but completely nontoxic. CONCLUSIONS: The initial data shows GSE to have antimicrobial properties against a wide range of gram-negative and gram-positive organisms at dilutions found to be safe. With the aid of scanning transmission electron microscopy (STEM), the mechanism of GSE's antibacterial activity was revealed. It was evident that GSE disrupts the bacterial membrane and liberates the cytoplasmic contents within 15 minutes after contact even at more dilute concentrations.

PMID: 12165191 [PubMed - indexed for MEDLINE]

-------------------------------------------------------------------------------- http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12165191&dopt=Abstract

Thanks again Everyone for your support and the great information.

Thanks Thanbey for the solid advice and casperclaudee for your words of encouragement. It's good to hear that people can have Hep C for a long time without symptoms.

Thanks to all for the links to great research papers - my cousin will really appreciate the paper on lupus and renal disease.

It's taken a full year to have my results checked, 2 biopsies (the first one was too small a sample) and some investigation for the automimmune disease. Being of the "instant gratification" generation, it has felt like an eternity. What I have learned is patience - not sure I asked to learn that but I've had the lessons anyway.

I'm finally absorbing the whole picture and trying to put it all in perspective. You've all helped me get off to a great start and I thank you. I hope I can become a valuable member on this site and some day return the kindness.

Hi Aboutime, and I hope you have some. I am a big fan of seeds. Since I found they are a source of Gamma Globulin that fraction of the blood serum which contains most antibodies. It is like that song, "Eating seeds a pasttime activity, the toxicity of our cities of our cities". Japan is studying Avacados for there benefits to the liver and the study of germinated seeds (sprouts)is also, showing to have health benefits. I have a Drawf Grapefuit tree that I keep oraganic. Thanks for the posts.

Hi Boonies,

It's been a while since I've heard that phrase but it's amazing how old things are made new again from time to time.

If you would, tell me more about avacados and sprouts here:
http://www.healthboards.com/ubb/Forum62/HTML/001224.html

If you see anywhere in my response where I'm offering advice please translate it to me as I'm missing it. I'm simply stating that other than the hcv that I am quite healthy otherwise and am perhaps a good candidate for treatment is all

As for having problems with regard to suggestions made within postings, perhaps the first response should be to have Anteek change doctors. If I'm reading the question correctly, his/her doctor suggested that treatment might indeed be an option. If autoimmune problems preclude the use of interferon then there's Anteeks answer right there regardless of genotype no?

As for success rate(s), these too need to be considered. I too am concerned that many of us have fallen into the "cure this now or else..." mindset but each of us needs to realize all considerations before making decisions. If Anteeks is limited due to other pre-existing conditions then unfortunately treatment may not be an option.

As for myself, I am in pretty good health. I eat right, run and exercise daily and after considering all of the potential health, emotional, financial and personal risks I decided to go on.

I am a father with a one year old son. I am looking forward to playing sports such as football, boxing, wrestling, rugby and so on just like I did when I was young. Already we have both scratched and bruised each other just rolling around the house. Each time he falls down he giggles wanting more. When I cut myself he giggles however I don't enjoy it as I otherwise might as I am now in fear of giving it to him.

We are a very physical and a very happy playful family. I want to continue to be so without having to check myself constantly to see if I have any open wounds that might make my son and other family members sick. I refuse to spend the rest of my life wearing a bottle of alcohol like a sidearm just to have fun with my family. I live in Florida so wearing a coat of armour is not an option. If you have any ideas or suggestions then I'm all ears. Otherwise I'll keep my thoughts to myself.

Thanks JHL

I appreciate your words of encouragement and never thought you were saying I should be treated - just offering your story. Thanks again. I also appreciate the concern that many people are quick to give advice but didn't see you doing that.

Keep enjoying life. Say "hi" to sunny FLA. I was there on vacation two weeks ago - so hard to return to no leaves on our trees yet in Canada.

Hey JHL,

For what its worth, I didn't get that either. I didn't interpret anything you posted as advice to treat.

Its getting a little anti treatment in here so I go to other sites for support. Treatment is referred to as "drugs/chemicals". Which it is but IMO thats a narrow way of defining it.

I am in my 3rd week to Pegasys/Copegus and feelin' groovey. Take care and see ya at Disney!

Jeannie

JHL-
HMMMM- Well I read your post over and over, I too see nothing of you advising patient treatment,in any way,
I am quite sure most do not just inject any phase of the interferon treatments, then read up on it after the fact to see if its dangerous for that perticular person, like one would try a new coffee because others are drinking it.

Most of us here have studied the heck out of these treatments, and their sides and dangers,

There has been several of these unwarrented "attacks" ["for lack of better words"] lately, I am not sure if they are missinterepeted or one sided pressure.

Be Positive, Be well+





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--Get Outdoors-Enjoy Life----Neil

JHL,Thanbey & Anteek,

I'm sure it was not the intention of either one to start an argument. I find it's very, very hard to write emails, postings, letters, etc., as someone might take it the wrong way. You can send 5 different people the same EXACT email and guess what....they will all read into it differently.

I believe on this site, and others too, it's not "medical degree" advice you are receiving. It's real people giving real accounts and/or ideas & thoughts about Hepatitis. You are to take that information then do with it what you will. It's not gospel and it's not coming from YOUR own medical doctor. That's where your medical advice should come from (although if Thanbey is right, GET A NEW DOCTOR...this one sounds like a quack...advising you to treat when it can kill you!!)

This is what actually attracted me to this site....My husband and I have a doctor whom we trust and gives us the medical advice we need...but we also wanted REAL accounts about HepC and treatment so we could go from there. We felt we could not get this information from the doctors office.

Just so you know...my posts are accounts based on my husbands HepC, my information that I read and constrew. I don't have a medical degree and I don't have information that strictly pertains to you. I think you will find that's mostly the case on these boards.

I hope you find the answers you're looking for and I wish you the best of luck!
Susan

hi anteek
i by no means interpret any suggestion to treat!just to let you know.
keep the faith, bless you..............mj

Hi,
You said you showed another immune disorder. I too have Hep C along with Cytomegalo Virus which is associated with other disorders because your immune system is trying to fight the other. Were you checked for CMV? Common in HCV and HIV patients

Thanks for the suggestion Mimireco

I am trying to do some investigation of my own. I am having trouble getting physicians interested in investigating the automimmune markers.

Thanks for the suggestion Mimireco

I am trying to do some investigation of my own. I am having trouble getting physicians interested in investigating the automimmune markers.

Hi Anteek, Don't give in until you're satisfied. I have a history of a blood clot and my last dr isn't even concerned about it, but I am. I've found in my research that a blood clot history should be considered before tx. I've decided if this new dr doesn't allow me to choose which tx, I won't do it. If I'm willing to take the risk, he needs to listen to me. Good luck...

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Jeanie

hi meanjeanI2002
when i was in the hospital they thought that i had a clot going to the lungs, thank God "it was negative", i was pretty scarred as clots were a factor with my mother, and my sister also had some removed.
keep the faith, bless you.........mj