Hep C Discussion Forum

You're the person that confronts people are you kidding me ? You got all over Brendan when he asked you not to highjack my thread "latest labs" which was pretty simple post and discuss latest labs. All he did was tell you to start a new thread and you took it all personal and told him what a terrible person he was, now i'm terrible because because I "worship at the alter of modern medicine". Well excuse me for taking Interfeon and Riba to get rid of HCV.....wow are you serious dude.

Ya buddy it's called science about a disease that kills hundreds of thousands of people a year world wide.

Suggesting that people who advocate for the only proven cure for HCV "worship at the alter of modern medicine" makes me so flippin angry. Ya Ron I just had the worst year of my life because there was no other choice !

Never mind James,

I'm not going to be friends with someone who is obstinate.

I will just add you to the list of posts that I dont read.

I need to avoid confrontation with people like you.

Thanks for your understanding.

Ron.

WHY THE CAPS JAMES?? I THOUGHT WE WERE HAVING A FRIENDLY CONVERSATION?

-- Edited by Ron Gilbert on Monday 16th of May 2011 04:27:24 AM

Thank you all so very very much for going so easy on me. my friends. It makes me feel so good that you all are so kind.

I am the first to admit my ignorance about much of this. I am a student here and just learning as I go. I may be just much more fortunate than I realize with regard to progression of the virus. I feel so uninformed. Your comment about being "stage 3" honestly is the very first time I have even heard of "stages" (I feel so stupid)

Again, maybe I'm an exception but your point about quality of life is well taken and with many (as myself) HCV does not reduce quality of life. This is why its one of the "silent killer" but for me the question always remained: what if it stays silent as long as I'm alive?

It is a very dificult question to answer for someone like me who has had no symtoms whatsoever for the past 20 years.

I don't know Survivor but this thread sounded like he was promoting healthy lifestyle choices along with possibly helpful supplements. Which is something I would agree with if a person has already made a person choice NOT to take tx. It is a personal choice and I do believe it may be a valid one for some people. I have a friend who took tx and failed about 10 years ago and is planning on riding it out for the rest of his life. He took tx because he had insurance to cover it at the time. He had no symptoms or problems than and nor does he now. He is in his mid 60s.

When I went into the Dr. this time around I was looking for a way to monitor the progression of HCV in my body personally. Its all too clear that this thing has as many different effects as there are people infected. So my idea was to monitor and try to predict my risk level going forward. Lol. Very funny because the Dr. just looked at like.......  "your asking me the watch a bomb and tell you if it explodes?" Lol. He never said that but I was reading it in his eyes. All he said was "Look, you "COULD" need a liver transplant within ANY 5 year time period going forward" Needless to say, I signed up. Lol.

People have been buying herbal "remideis" for centuries and alway will. I personally perfer "remidies" as a first line of defence over medical science. But Im a responsable enough of an adult to realize that HCV is one of those nagging dieases (virus) that needs medical science to assist us in the fight. And fight we will. Together we are conquring this thing.

Thanks again for all your kindness, it really means a lot to me.

Ron.

 

 

 

Hi Folks,

I posted a little update on the blog (Update 3), for any that might be interested.

Best Wishes to you all.

Herbs don't kill the virus and don't cure HCV. The problem is mis-information, this person has no idea if these herbs affected his VL. He needs to provide a clinical study before he makes these bogus claims. He did the same thing in the Med Help forum and got the same reception.

I admire people who do tx too, I did it and I'm no super hero does it $UCK yes I hated life for 6 plus months is it doable, very doable.

As far as treating or not treating it's not JUST about dying it's about quality of life with HCV. You cannot tell me that you are living a normal life with one of the most important organs in your body under seige. My liver is stage 3 at the begining of tx, and to be honest I don't think 2 seconds went by after I was told this and for me to say ' when can I start '.

People with BS cures for hep C are nothing but snake oil salemen and they do no one in this community or forum any good.

James

"Most reports on milk thistle claim that there is a total lack of side effects when taking this herb. However, on close review of the literature, the following side effects were noted: headache, irritability, nausea, minor gastrointestinal upset, and, most commonly, diarrhea. These side effects are similar to those commonly encountered in connection with the use of interferon (the FDA-approved treatment for hepatitis B and C).  

 

Whoa there!  Not even close to being accurate.  Been there, done both.

It seems that everywhere I read, there is a different number quoted for the success rate for the current TX. I have read that the actual rate is 30%. You are saying 55%. The doctor who treated me said 70%. Who knows. It just seems like the number of cured people that I hear about is way lower than the ones who aren't.

The truth is, average 50% attained SVR on SoC treatment (Geno1a/b). Don't ask me why your doctor gave you that information. I've watched enough people online to know that many are told lots of erroneous information when it comes to "doctors". I think the key is to finding a specialist that is well-versed in HCV, treatment and is keeping up with the latest scientific evidence. Which you could find on HCV Advocate.org (support groups are available in just about every state)

For Milk Thistle - it is certainly no cure at all. I just view it as one of many supplements, that in combination with a super healthy diet and lifestyle, will add a little to my overall health and chances if survival to a cure.

I have a real problem with herbal supplements- it's a free for all in that business and the herbs/supplements are not well regulated. It also alarms me when I read that there was a study done on Milk Thistle which showed liver cell damage caused by the supplement.

I am a little shy at trying anything with the old stuff in them, and will probably wait just a bit and see what the real cure rates are looking like for former non responders like myself before jumping in.

65% of previously treated patients attained SVR with teleprevir (Sept. 7th, 2010)
(.pdf file) REALIZE study.

Links from HCV Advocate.org:

Note: all links are .pdf format

Teleprevir

Herbs and Dietary Supplements

Label inserts:

Infergen

Pegasys

PegIntron

Ribasphere (ribavirin)

Everything you need to know about HCV from HCVAdvocate.org (lots of information here)

SVR clearance rates can also be affected by ethnic background- Asians have the highest success rates, Anglo-Saxons are next, then African and Hispanic.

As of 1/7/2011, scientists have come up with a predictive marker (blood test) that will determine the response to treatment

This is very exciting news, for some are just destined to be "non-responsive" and this could be a great tool for encouraging treatment.

None of us can tell you what treatment regiment will be a success for you- you could just be one that is treatment intolerant. Granted, teleprevir is a very promising drug- but the costs will be very high and the sides are not pleasant. I was the only one out of 200 people that had to deal with hyperlipidemia. My lipids were skyrocketing and I ended up on meds to lower my triglycerides. Those numbers immediately returned to normal when I got completely off treatment. Don't know if I can blame the teleprevir, because hyperlipidemia was an issue even when I discontinued the teleprevir (I took it 12 weeks). However, my response rate was was very quick and I attained SVR withn 14 days.

That WBC range that Mocow posted is the normal range on my labs....fwiw

As far as diet, raw food is probably the best thing you can do for yourself.

Not so much raw as the protein intake- the best proteins are in legumes and very easy on the liver, compared to animal meat.

I was referring to the dismal cure rates for the therapies which ARE out, not ones yet to be released.

I would agree with James10500- 55% isn't that dismal. Unfortunately, it was dismal for you, but even for those that don't attain SVR, people still do try and re-treat.

If the new drugs coming out (still containing interferon and ribo do they not?) help others - great! I may even give them a shot.
(I say may, because I know too well how damaging interferon and ribavarin are to your body and immune system)

Personally, I think the use of interferon helped you more than you think. Your lower viral load can be attributed to the fact your liver got a chance for some regeneration. A lower viral load also tells me your immune system is doing better, because at this point, your viral load is lower than ever. I doubt, seriously that you will stay with a low viral count, simply because it will start reproducing eventually.


Yes I do have a bone with the treatment I received, the lies I recieved from the "experts" about its chances of a cure, the damage they did not tell me it would do to my body. So now I am a lot more willing to look at alternatives and not be so blinfly willing to accept the word of experts without a lot more thought.

I don't know where or whom you were administered your treatment and care- but I will say, for myself- I was told the negatives of using the SoC drugs. On the bottle of Ribavirin, it states that cancer can be a problem from using Ribavirin and low cell counts are a side of the use of peginterferon.

I know for a fact that there are plenty of specialists out there that administer treatment protocols that never tell their patients anything, but for the better part, most people are informed and if they aren't, maybe they aren't asking pointed questions. Personally, I had the best team in this country (Mayo) and was closely monitored. I also was told that treatment could excerbate underlying conditions. I was never told, nor was it suggested to me that I would come out of treatment, SVR or not, feeling like I was a teenager again. Treatment destroyed my joints and connective tissue, yet- I've not had any infection issues, like colds or flu since I treated. So, IMO I'd state that treatment boosted my immune system.

Teleprevir will be released very soon. In fact, it's scheduled to be released in the UK this year. We won't be far behind.

Normal WBC count is 4.3-10.8 so I have to ask, are you getting CBC's drawn on a regular basis? Normally those counts do rise after treatment is ended and it takes a while for those counts to elevate.

Also, I would take the time to read Dr. Melissa Palmer's article on Milk Thistle and its supposed claims. What stands out to me are these points:

• Thus, although it may decrease liver enzyme elevations it cannot eradicate the hepatitis C or B viruses from the body, nor can it lessen the amount, or toxicity of these viruses in the body.

• With milk thistle, as with all herbal remedies, there is no standard recommended dose  or length of time to take the herb in order to best achieve its purported benefits. Recommendations made on labels and in herbal publications varyfrom as low as 70 milligrams twice per day to as high as 420 milligrams three times per day. Recommendations for duration of use range from one month to as long as nine months.

• Most reports on milk thistle claim that there is a total lack of side effects when taking this herb. However, on close review of the literature, the following side effects were noted: headache, irritability, nausea, minor gastrointestinal upset, and, most commonly, diarrhea. These side effects are similar to those commonly encountered in connection with the use of interferon (the FDA-approved treatment for hepatitis B and C). One experimental study, which has not been duplicated, demonstrated that liver cell damage occurred as a result of exposing liver cells to milk thistle. The long-term side effects of milk thistle usage are not known.

Dr. Palmer is a leading expert when it comes to Hepatitis and wrote the book, " Dr. Melissa Palmer's Guide of Hepatitis and Liver Disease" in 2004.

Also, concerning your low WBC's, you might want to read Mayo's definitions of low WBC- you could have something else going on, remember what I stated- treatment can exerbate underlying conditions. Maybe you should look further into that issue.

Non-responders that took teleprevir had marked results when re-treating incorporated the protease inhibitor. You should look into it, the results are very promising.

Yes - my point, or goal is to try and improve liver health and overall health by any means I can, until I do find a true cure, or die trying.

I'll keep my blog updated when new results come out, and hopefully get a true cure with the new drugs coming out soon.  

I wish everyone here success with the new round of drugs coming out later this year.

James10500 wrote:

---

Cure rates for Geno 2,3's is 80%. It sucks that SOC didn't work for you. But 50ish % is a lot better than 0% for 1's.

if thinking outside the box means believing things that are not true then I'll stay in the box. If your point is to improve liver health I applaud you. But what really matters isn't viral load it's damage to the liver.

As far as diet, raw food is probably the best thing you can do for yourself.

---

 

I was referring to the dismal cure rates for the therapies which ARE out, not ones yet to be released.

I don't know now many times I have to repeat that this is not a cure. You are arguing a point I never made.
Anyone who challenges the established group think is arrogant eh? I don't think so.

"Medical science is a technology that cannot be questioned when it comes to HCV" - what nonsense. "Medical science" is changing daily. I have run into to many "experts" who later proved themselves to be full of baloney. This is one reason I finally had to seek another path to get my health back.

Yes I do have a bone with the treatment I received, the lies I recieved from the "experts" about its chances of a cure, the damage they did not tell me it would do to my body. So now I am a lot more willing to look at alternatives and not be so blinfly willing to accept the word of experts without a lot more thought.

If the new drugs coming out (still containing interferon and ribo do they not?) help others - great! I may even give them a shot. (I say may, because I know too well how damaging interferon and ribavarin are to your body and immune system).

Until then, I will seek out ways to improve my health however I can, and if I find them I will try and share what I found.

Some people will not respond to the new treatments. Those people still need help. Again, common sense tells me (along with my own body condition) that a huge number of damaging virus is worse than a very small number over a long period. I don't care if studies on fibrosis have not made that correlation - there are a lot of other damages that can be done besides fibrosis.

Moocow wrote:

---

Oh, like spend several billion dollars doing blind studies so that I can come out with a drug that has a dismal cure rate but gets the big drug comapnies richer? Right.....

Vertex does not have a "dismal" cure rate, fact is teleprevir used in conjunction with SoC treatment has raised the rates from 55% (Geno1a) SVR to an astonishing 80%. 30% increase in SVR rates isn't anything close to dismal.

Those who cannot tolerate treatment might find that using herbal remedies or modified diets might make them feel better, again- it's far from a cure.

Stating that there are others that "think outside the box" and that is the reason you are sharing this information belongs in the alternative treatments section, not here. For you to expound upon your methods in the manner that you do is somewhat arrogant and also gives false hope.

Whatever happened to you due to the SoC treatment isn't uncommon, some of us do cope with lasting effects of interferon use. But, NONE of us that have successfully treated would ever suggest using your methods. Most people want to attain SVR, not try and keep the virus from reproducing (as you claim).

Medical science is a technology that cannot be questioned when it comes to HCV- I've been watching the strides they are making when it comes to treatment for years. Obviously they are moving forward with better treatment, again- RAISING the rates of SVR.

And what exactly is your problem with studies as a whole? Studies are not conducted for monetary as much as safety and effacy. It takes years to get a drug that could possibly stop the progression of any disease on the market.

If it wasn't for the second human study I enrolled in, I'd still be sick and secondly, it helped with the financial end of the costs of treatment. I was very proud to have enrolled and helped many others proceed with subsequent trials so that teleprevir will be released soon. This will be a key component for those that never could attain SVR.

All your comments are showing is you've got a bone of contention with SoC treatment and where it left you- with no real viral response. Your bitterness is noted.

-- Edited by Moocow on Monday 7th of February 2011 08:43:52 PM

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Samby wrote:

---

I do believe it has helped me a lot.

But you don't really know. Show us something testable, repeatable, and peer reviewed and we'll talk. Until then, yours is just another Internet anecdote.

---

Oh, like spend several billion dollars doing blind studies so that I can come out with a drug that has a dismal cure rate but gets the big drug comapnies richer? Right.....

Here is another way of looking at it. Forums like this exist to allow people to exchange info, which potentially may help each other. Billion dollar drug studies are not a prerequisite for posting info that may be helpful.

In fact, if you really believe that the SOC is the only way to go, why even bother posting or reading here at all?

I dont need to prove anything to you whatsoever Samby. If you want to stay in your little tunnel, be my guest. There are others out there willing to try new things - and I am one of them. I have recieved a lot of thank-you's already from people who ARE willing to think outside the box. This post is for them.

 

 

 

 

I do believe it has helped me a lot.

But you don't really know. Show us something testable, repeatable, and peer reviewed and we'll talk. Until then, yours is just another Internet anecdote.

FACT:

Viral loads fluctuate, with or without any natural supplements, diets or other methods.

There is NOTHING out there that will "cure" you of the disease, other than SoC treatment (peginterferon and ribavirin) and with the new protease inhibitors ready to bust out of the gate, percentages will rise with SVR rates.

I read your one and only entry and granted, you've given up the alcohol, made some major changes with what you ingest- great.

However, you still have the virus and it is still doing damage- I believe your treating for whatever true amount of time you did- did your liver a great deal of good. Thus, lower viral load.

Yes, you might have a lower viral load- but it will rise eventually and start that process over again. If you ever (in the future) end up doing a burst of prednisone or other steroid, your viral load will skyrocket and never come down. It's all logic.

I would encourage you to look into the ready to be released teleprevir. I think you would cure, but I will say, taking the combo SoC and VX-950 is certainly no joy ride.

I also would never suggest that milk thistle is a good idea, but to each his own.

You have hepatitis.

Samby - This is the 2nd time one of your posts has had to be edited. This forum is here to support people and your comment was neither helpful nor supportive!


-- Edited by greenqueen on Monday 7th of February 2011 10:42:33 AM