Infected 45 years and still only F1? Is it possible?

[mike716]

Hi, guys. It's me, Mike the forum lurker, back again with another mind-twister question that will no doubt cause dissention and get me into trouble, but here goes:

Has anyone here ever heard of someone having HCV for over forty years and still being only at the F1 stage of liver fibrosis?

This is the story (I say "story" for lack of an adequate censor-passing epithet) that my hep MD has been feeding me for a year now. He says that from my medical history I probably got infected from contaminated blood when I had a motorcycle accident at the age of nineteen (I am now 65) and was transfused at the hospital that treated me for concussion.

Personally, I think this story is a lot of self-serving hooey, and that in reality I was infected by a bad dentist here in Argentina just a few years ago.

My biopsy six months ago showed F1-F2 fibrosis, but my blood markers and GGT have been going steadily upwards in a continuous progression through eight blood tests over the past 14 months, and I definitely do not have the energy I had even one year ago.

So, my hep MD thinks that I was infected 45 years ago and am a very slow progressor, and I think that I was infected a coupla years ago and am progressing rapidly.

This is not an academic question. My hospital is postponing treatment based on their diagnosis: they think I can wait a few years for a better tx. Whereas I think I may have cyrrhosis before they ever get to my next biopsy.

What say you all? Is it possible to be F1-F2 after forty-five years of HCV?

Mike

[willbb]

  Doctors will not tell you this, but there still is no cure.
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To any new forum members reading this thread....this is absolutely and categorically factually   'incorrect"

  Also said: above "I just will not put myself through the painful treatments"
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ditto for this opinion to as tx. today is for the most part not at all painful shown by extensive reasearch


Also said above:
There are some if caught early enough, do conquer the virus, but those are not the majority
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Factually incorrect ...........as extensive docummented reasearch with 100's of thousands in studies and treated clinically show cure rates of approx . anywhere from 50 to 100% with most studies showing currently  approx.  80 -90 %..   This is  by far  "THE MAJORITY.

Also said above: Some of the top doctors do not recommend I treat as it may make me more ill and less able to fight the virus as my body has been doing.
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Possibly this is the case for the above poster personal case ,,however shown by the extensive research ..,,not factually correct for most(as shown in link below

.http://www.todaysthv.com/news/story.aspx?storyid=197143

.About 3.2 million Americans are estimated to have chronic hepatitis C, but at least half of them may not know it. The virus, which affects 170 million people worldwide, can gradually scar the liver and lead to cirrhosis or liver cancer. It is a leading cause of liver transplants.
      
A CDC study published Monday analyzed a decade of death records and found an increase in death rates from hepatitis C. In fact, in 2007 there were 15,000 deaths related to hepatitis C, higher than previous estimates - and surpassing the nearly 13,000 deaths caused by the better-known AIDS virus.



Everyone here is more than entitled to their opinions...  however expressing them as if they are facts  is grossiy misleading to other members

Best...
Will
.  

[suzy2000]

I have done all you suggested.  Some of the top doctors do not recommend I treat as it may make me more ill and less able to fight the virus as my body has been doing.  Doctors will not tell you this, but there still is no cure. I am 68 and doing quite well considering.  Research doctors still claim to me that the virus is just hidden and there is no absolute cure.  And often, the treatments makes a person worse off than before they began treatment, putting more stain on their immune system..  There are some if caught early enough, do conquer the virus, but those are not the majority, especially if you are 68 years like me. I still see the research doctors about once a year.  I just don't go to city doctors much because it was city doctors that almost killed me from them being uninformed.  Even after the researchers information, they still did not understand the seriousness of the virus I had.  I know they are more informed today, but I simply do not put my life in the hands of another human.  I know what works for me.  And again, the doctors still tell me to keep doing what I am doing because I am far more healthy than many of their Hep C patients., so much so they are amazed.  Heck, I am 68 now.  If Hep C was going to kill me, and it is such a slow process, how much older can I get?  I think I still have 10 years or so before the virus disables me or something.  Heck, that would make me 78.  How long can I live?  I just will not put myself through the painful treatments.  I don't even believe in Chemo for cancer as I have seen it kill too many of my friends that would have lived longer.  My mother had the worst cancer in her back at 60. She refused treatment and lived to be 89 years old with no effects of the cancer until her very last year. Chemo would certainly have killed her and her immune system that stayed so strong for so many years. It is my belief she hindered the growth of the cancer with a special herb formula, formulated just for her from a Chinese Dr. in NY. . Doctors said Mom would die within a few years without Chemo etc..  She proved them wrong. She lived another 29 years with a dormant cancer next to her lungs and back that was supposed to be the fastest growing cancer. I am glad she refused treatment for cancer.  

[mike716]

I agree with you that with the new non-IFN med regimes, which have hardly any side effects, there is really no reason not to treat, at any age. If you can get the meds.

Mike

[mike716]

Hi, Suzy.

Thanks for telling me your personal history. I found it very interesting. Although I'm not convinced that the new meds won't eliminate the virus, I do believe that a good combination of nutrients and supplements can do a lot to slow down liver damage. And of course diet and exercise are super important.

I think your idea of sleeping as long as your body wants to sleep is very good. I've been practicing it all my life. Unfortunately, it has ruined my work life. I can't keep a work schedule because I never know what time I'm going to get up, and I frequently have to lie down during the day. Of course, no one understands.

Keep up the good fight, Suzy.

Mike

Sorry to hear what all those bad pill-pushers and saw-bones did to you years ago. I have no great love for doctors, believe me. A researcher friend once said to me: "We do all the work, they (the MDs) make all the money". That about sums it up. One doctor in a hundred went into the business (I don't consider it a profession) in order to help people. The other 99 just wanted the money.

[JimmyMose]

suzy2000 can offer her own experience and personal opinion about how she treated herself such as "I take and a special herb vitamin (Nu-Liver) which I can only order online,"

FYI for anyone reading posts at this site if you haven't already or can't remember please read the small print at the bottom of every page.

Because these forums are public, search engines may show new topic post or replies to older topics nearer to the top depending on the search terms.

I am not a doctor nor a medical expert and can not say that any specific herb, remedy or other natural substance can cure, reduce, have no effect or even be harmful to someone with Hepatitis C. But when I see a statement like "only can be ordered online"  for me that's a red flag. If it's not carried in a local health food & supplement store even they could be concerned about potential legal problems.    

In many countries including the US, only a medical doctor is legally allowed to make a diagnosis and prescribe treatment for a specific medical condition.  

Because HCV progression can be very long some early attempts at treatment like antibiotics or even INF & riba can cause serious side effects that may get better when treatment is stopped. Just because someone started taking natural herbs or not is not any real proof that the herb is making it better.  Many people with low fibrosis and/or no or mild symptoms may do well for many years just following medical advise for chronic HCV.  

About (Nu-Liver)
http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm162771.htm
This is to advise you that the Food and Drug Administration (FDA) reviewed your websites in March 2009 at the Internet addresses: www.nu-liver.com, www.hepatitisc-remedy.com, www.nu-liverpc.com and www.storesonline.com/members/459211/hepatitis-c-herbs.htm and has determined that the products “Nu-Liver” and “Nu-Liver PC” are promoted for conditions that cause the products to be drugs under section 201(g)(1)(B) of the Federal Food, Drug, and Cosmetic Act (the Act) [21 U.S.C. § 321(g)(1)(B)]. The therapeutic claims on your websites establish that the products are drugs because they are intended for use in the cure, mitigation, treatment, or prevention of disease. The marketing of the products with these claims violates the Act.
....
...The reference citations and other claims are supplemented by metatags used to bring consumers to your websites through Internet searches. Examples of these metatags include “liver disease treatment,” hepatitis C treatment,” “hepatitis C remedy,” “hepatitis remedy” and “liver disease remedy.”

Your products are not generally recognized as safe and effective for the above referenced uses and therefore, the products are “new drugs” under section 201(p) of the Act [21 U.S.C. § 321(p)]. New drugs may not be legally marketed in the U.S. without prior approval from FDA as described in section 505(a) of the Act [21 U.S.C. § 355(a)]. FDA approves a new drug on the basis of scientific data submitted by a drug sponsor to demonstrate that the drug is safe and effective. Your products “Nu-Liver” and “Nu-Liver PC” are also misbranded within the meaning of section 502(f)(1) of the Act in that labeling for these drugs fails to bear adequate directions for use [21 U.S.C. § 352(f)(1)].....

http://hepatitiscnewdrugs.blogspot.com/2010/11/hepatitis-c-fda-sunday.html
Chronic hepatitis C and those questionable websites profiting from individuals suffering with chronic illness.
Therapy for Hepatitis C is an arduous treatment regimen currently with a less then desirable success rate. The majority of people infected with HCV seek out medical treatment while others search for a more alternative approach, however both groups may turn to the Internet.
The latter group of people seeking an alternative may find themselves a prime target for online medical quackery. The Internet is full of sophisticated marketing ploys with snake oil salesmen ready to take advantage of the numerous people in this unfortunate situation. The operating method used by these unscrupulous websites is to prey on the fear or uncertainty when diagnosed with a chronic illness. As humans we have an innate ability for survival at any cost. With these emotions in place it isn't uncommon to justify a few unrealistic expectations. Hence we begin a search that may lead down the path to a potentially dangerous result.
Chronic illness is a good investment for any entrepreneur especially when all ethics are effectively dismissed. Thousands of these all-purpose, herb selling, self promoting salesmen; are waiting online to finance their new enterprise.

General for Herbal medicine University of Maryland Medical Center
it is important to consult with your doctor or pharmacist before taking herbal medicines
http://umm.edu/health/medical/altmed/treatment/herbal-medicine
excerpts
Is there anything I should watch out for?
Used correctly, herbs can help treat a variety of conditions, and in some cases, may have fewer side effects than some conventional medications. But because they are unregulated, herbal products are often mislabeled and may contain additives and contaminants that aren’t listed on the label. Some herbs may cause allergic reactions or interact with conventional drugs, and some are toxic if used improperly or at high doses. Taking herbs on your own increases your risk, so it is important to consult with your doctor or pharmacist before taking herbal medicines. Some examples of adverse reactions from certain popular herbs are described below.

Some herbal supplements, especially those imported from Asian countries, may contain high levels of heavy metals, including lead, mercury, and cadmium. It is important to purchase herbal supplements from reputable manufacturers to ensure quality. Many herbs can interact with prescription medications and cause unwanted or dangerous reactions. For example, there is a high degree of herb/drug interaction among patients who are under treatment for cancer. Be sure to consult your doctor before trying any herbal products.

[ceanothus]

On re-reading my post I've realized it sounds kind of condescending and I really did not intend that. I apologize! I can't help doing sermonizing some, because I feel so strongly about this subject, but I do mean to be respectful of others at the same time. Please try to mentally subtract the condescending qualities of my post!