Reducing viral count without interferon or ribavarin
Minerva said
May 16, 2011
This thread is now locked!!
James10500 said
May 15, 2011
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 !
Ron Gilbert said
May 15, 2011
BTW, FOR ANYONE WHO IS INTERESTED.
MY VL DROPPED FROM 4.6MIL TO 1.6MIL
WHEN I QUIT SMOKING CIGARS. AND FOR
THOSE OF YOU THAT WORSHIP AT THE ALTER
OF MODERN MEDICINE, I DIDNT GET A GOV.
STUDY. SORRY FOR THE UNCONVIENANCE.
Ron Gilbert said
May 15, 2011
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.
Ron Gilbert said
May 15, 2011
I SAID NOTHING WHATSOEVER ABOUT LOWERING VL
-- Edited by Ron Gilbert on Monday 16th of May 2011 04:27:51 AM
Ron Gilbert said
May 15, 2011
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
James10500 said
May 15, 2011
HERBS HAVE NEVER BEEN PROVEN IN A CLINICAL STUDY TO LOWER VIRAL COUNT PERIOD END OF STORY
Ron Gilbert said
May 15, 2011
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.
James10500 said
May 15, 2011
Boceprevir was released are you going to try it to get rid off HCV for real ?
Be well,
James
hepcsurvivor said
May 15, 2011
Hi Folks,
I posted a little update on the blog (Update 3), for any that might be interested.
Best Wishes to you all.
ty said
May 15, 2011
Hi All,
The reason that most of us feel that the herbal advice is dangerous, is because many people directly market people who are desparate and can be easily misled into an "easier, softer way". These over priced and unresearched "cures", both steal their money and lead them to believe in miracle cures that dangerously delay needed Tx.
If anyone believes that the SOC of interferon and ribavaron, (with the addition of the latest drugs used for genotype 1's) are equal to herbal supplements only needs to read hepcsuvivor's latest entry on his blog.
He is having a variety of liver problems and is waiting for the approval of the new SOC drugs. Unfortunately, both his GI doctors are recommending that he get on the liver transplant list, because the disease has progressed too far. My heart goes out to him, but herbal supplements do not work. ty
James10500 said
May 14, 2011
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
Ron Gilbert said
May 14, 2011
What a spirited thread,
I admire Moocows passion and convictions. Ive read many of your posts and found them very helpful. The one thing I didn't notice in your posts to survivor is compassion for this persons plight. My heart really goes out to anyone and everyone who takes this tx. And he did take the treatment and even supports taking the new treatment.
There is no set of right answers for everyone facing these tx decisions. As far as I'm concerned I was a great candidate for taking no treatments whatsoever. The CDC says I have a 70% chance of developing Liver Disease but does not define Liver Disease. I could be wrong here because my knowledge is limited but outliving the virus seems a valid choice for those who choose that path. Everyone has to make their own choice and there is no single "right" answer.
The bottom line on the CDC "progression of Hep C" chart is that 1-5 (out of a hundred) die of Cirrhosis or Liver Cancer. And even that info is vague and leaves many unanswered questions, such as: are they talking about all liver related deaths? (hcv excluded) And what about alcoholics compared healthy lifestyles? Even ethnicity plays a role so without question some peoples odds of survival will be much higher. http://www.cdc.gov/hepatitis/HCV/PDFs/HepCGeneralFactSheet-BW.pdf
The point is even if I took the worst case odds of a 5% chance of dying with Liver Disease it means I have a 95% of NOT dying with liver disease!
Again, my heart goes out to Survivor and Im grateful for your posts as I'm seeking all the information I can get as I progress in this tx journey. This is the first Ive heard of drastic low WBC and this is the kind of thing I need to be prepared for should this befall me.
Thank you again for the spirited posts on both side of the debate. I admire the passion.
Ron.... PS. I'm in my 3rd week of tx so if anyone is going to come down on me, please go easy on me. lol. lol. I need all the support I can get right now.
jeffa said
Apr 25, 2011
"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.
hepcsurvivor said
Feb 8, 2011
"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."
Well to each his own. I personally have a real problem with sitting back and dying while doing nothing because there are no approved treatment methods available that work for me.
BTW, I just returned from the hospital (an hour ago) where I was to have my 4th upper endoscopy to band up bleeding varices done. On the previous visit (after having been on the supplements over a month) the GI Doc commented that the varices (bleeder veins caused by portal hypertension) were noticeably shrinking compared to earlier visits.
On THIS visit, the Doc stuck his tube down my throat, looked around, pulled it out and gave me the biggest smile I have ever seen from him. He said there was nothing to fix - all the swollen varices were gone.
Another example. Before supplements, my skin was thin and the slightest scratch would make me bleed. Now my skin has returned to normal. I can't recall the last time I got a cut, other than before supplements, Perhaps this is reflected inside as well, and partially accounts for the disappearance of my bleeding varices.
So, you may be skeptical, and if you have found something better I am happy for you (truly). I know what I am seeing in my body, and I like it. We're all different and respond in different ways to treatment. Let each person find the best path. Keep an open mind.
Stay Well!
-- Edited by hepcsurvivor on Tuesday 8th of February 2011 06:22:08 PM
-- Edited by hepcsurvivor on Tuesday 8th of February 2011 06:28:29 PM
Moocow said
Feb 8, 2011
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.
SVR clearance rates can also be affected by ethnic background- Asians have the highest success rates, Anglo-Saxons are next, then African and Hispanic.
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.
ChinsUp23 said
Feb 7, 2011
Survivor,
Looks like it is working for your intentions and that's awesome, I hope it can help someone else as well.
Thank you,
Marko
James10500 said
Feb 7, 2011
That WBC range that Mocow posted is the normal range on my labs....fwiw
hepcsurvivor said
Feb 7, 2011
Moocow thanks for the suggestions. Just a few points I want to respond to.
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.
As for interferon helping me - as I said it dropped my WBC count to 2.0 and it stayed that way for about 5 years. It did not come up till I started my current regimen. I will say this - while I was under treatment, my liver swelling disappeared, and as far as the abdominal discomfort I had, it went away - during treatment. Of course it came back as soon as I stopped. Well, with my current treatment (not a cure ) I no longer have the swollen liver and the abdominal pain is largely gone again. A good condition. My goal here is to simply stay alive long enough to make it to the drugs that will actually cure me. I believe I am on that path now, based on my own response to LDN and the rest.
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.
Back to my WBC. They are currently still within normal ranges, although I see your ranges are not what I have read.
In any case, once again, I hope we all benefit from the new drugs that are coming out. 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. Good luck to us all!
Moocow said
Feb 7, 2011
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.
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.
James10500 said
Feb 7, 2011
Wishing you the best in your battle. Perhaps with some Telaprevir and some Neuprogen for the WBC tx will yield a better result.
James
hepcsurvivor said
Feb 7, 2011
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.
James10500 said
Feb 7, 2011
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.
hepcsurvivor said
Feb 7, 2011
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
Moocow said
Feb 7, 2011
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
hepcsurvivor said
Feb 7, 2011
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.
espaeddie said
Feb 7, 2011
I'm a survivor and 2nd timer who had a hard time on tx .My loading is up to 15 mil but i feel energetic and full of life,have been told that loading doesn't equate to damage being done so who knows,and last liver tests were positive . All i know is that u stay healthy and positive and eat well and wait till u can hit it hard with new drugs doing the immune boosting suppliments also for what its worth,money well spent or not who knows but its worth a try
Samby said
Feb 7, 2011
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.
hepcsurvivor said
Feb 7, 2011
The interferon ribavarin did not cure me. It did damage my immune system, reducing my WBC count to 2.0. It stayed that way for years after TX. It was not until recently, after starting to taking a huge amount of immune boosting supplements, that I was able to get my WBC back up into normal ranges.
Since starting the program I outlined in my link, my viral load is dropping VERY fast. I feel great. My body is really ralllying.
No it is not a cure and I did not represent it as such. But the lower viral load does put me in a better position to treated by the next round of drugs coming out later this year.
I look at it from this perspective: If qty x of the virus can do x amount of damage, then have vastly more of the virus would do more damage. That seems to be reflected in my current condition. Its just common sense.
So no, I am not trying to say this is a cure. I do believe it has helped me a lot. If it helps someone else, then I am happy.
Moocow said
Feb 7, 2011
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.
hepcsurvivor said
Feb 6, 2011
Samby wrote:
Whether you survive remains to be seen. You have hepatitis.
Well thank you Samby - how encouraging. While I AM here , I will try and help people. What are you here for? Anything relevant to post, other than taking jabs at my login name? Sheesh!
Samby said
Feb 6, 2011
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
hepcsurvivor said
Feb 4, 2011
Hi,
I am a 32 year Hep C survivor. I found and tried a new combo of drugs and supplements that reduced my count from over 500K to 11K in a very short time.
I posted the whole nine yards on Blogger dot com under this lnk http://squashinghepatitisc.blogspot.com/
Not sure if links are allowed, so the title is "Squashing Hepatitis C"
And no, I am not selling anything. I just want to try and help anyone who is looking for an alternative. Everything I am taking you can easily obtain yourself.
This thread is now locked!!
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 !
BTW, FOR ANYONE WHO IS INTERESTED.
MY VL DROPPED FROM 4.6MIL TO 1.6MIL
WHEN I QUIT SMOKING CIGARS. AND FOR
THOSE OF YOU THAT WORSHIP AT THE ALTER
OF MODERN MEDICINE, I DIDNT GET A GOV.
STUDY. SORRY FOR THE UNCONVIENANCE.
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.
I SAID NOTHING WHATSOEVER ABOUT LOWERING VL
-- Edited by Ron Gilbert on Monday 16th of May 2011 04:27:51 AM
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.
Be well,
James
Hi Folks,
I posted a little update on the blog (Update 3), for any that might be interested.
Best Wishes to you all.
Hi All,
The reason that most of us feel that the herbal advice is dangerous, is because many people directly market people who are desparate and can be easily misled into an "easier, softer way". These over priced and unresearched "cures", both steal their money and lead them to believe in miracle cures that dangerously delay needed Tx.
If anyone believes that the SOC of interferon and ribavaron, (with the addition of the latest drugs used for genotype 1's) are equal to herbal supplements only needs to read hepcsuvivor's latest entry on his blog.
He is having a variety of liver problems and is waiting for the approval of the new SOC drugs. Unfortunately, both his GI doctors are recommending that he get on the liver transplant list, because the disease has progressed too far. My heart goes out to him, but herbal supplements do not work. ty
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
What a spirited thread,
I admire Moocows passion and convictions. Ive read many of your posts and found them very helpful. The one thing I didn't notice in your posts to survivor is compassion for this persons plight. My heart really goes out to anyone and everyone who takes this tx. And he did take the treatment and even supports taking the new treatment.
There is no set of right answers for everyone facing these tx decisions. As far as I'm concerned I was a great candidate for taking no treatments whatsoever. The CDC says I have a 70% chance of developing Liver Disease but does not define Liver Disease. I could be wrong here because my knowledge is limited but outliving the virus seems a valid choice for those who choose that path. Everyone has to make their own choice and there is no single "right" answer.
The bottom line on the CDC "progression of Hep C" chart is that 1-5 (out of a hundred) die of Cirrhosis or Liver Cancer. And even that info is vague and leaves many unanswered questions, such as: are they talking about all liver related deaths? (hcv excluded) And what about alcoholics compared healthy lifestyles? Even ethnicity plays a role so without question some peoples odds of survival will be much higher. http://www.cdc.gov/hepatitis/HCV/PDFs/HepCGeneralFactSheet-BW.pdf
The point is even if I took the worst case odds of a 5% chance of dying with Liver Disease it means I have a 95% of NOT dying with liver disease!
Again, my heart goes out to Survivor and Im grateful for your posts as I'm seeking all the information I can get as I progress in this tx journey. This is the first Ive heard of drastic low WBC and this is the kind of thing I need to be prepared for should this befall me.
Thank you again for the spirited posts on both side of the debate. I admire the passion.
Ron.... PS. I'm in my 3rd week of tx so if anyone is going to come down on me, please go easy on me. lol. lol. I need all the support I can get right now.
"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.
Well to each his own. I personally have a real problem with sitting back and dying while doing nothing because there are no approved treatment methods available that work for me.
BTW, I just returned from the hospital (an hour ago) where I was to have my 4th upper endoscopy to band up bleeding varices done. On the previous visit (after having been on the supplements over a month) the GI Doc commented that the varices (bleeder veins caused by portal hypertension) were noticeably shrinking compared to earlier visits.
On THIS visit, the Doc stuck his tube down my throat, looked around, pulled it out and gave me the biggest smile I have ever seen from him. He said there was nothing to fix - all the swollen varices were gone.
Another example. Before supplements, my skin was thin and the slightest scratch would make me bleed. Now my skin has returned to normal. I can't recall the last time I got a cut, other than before supplements, Perhaps this is reflected inside as well, and partially accounts for the disappearance of my bleeding varices.
So, you may be skeptical, and if you have found something better I am happy for you (truly). I know what I am seeing in my body, and I like it. We're all different and respond in different ways to treatment. Let each person find the best path. Keep an open mind.
Stay Well!
-- Edited by hepcsurvivor on Tuesday 8th of February 2011 06:22:08 PM
-- Edited by hepcsurvivor on Tuesday 8th of February 2011 06:28:29 PM
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)
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.
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
Moocow thanks for the suggestions. Just a few points I want to respond to.
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.
As for interferon helping me - as I said it dropped my WBC count to 2.0 and it stayed that way for about 5 years. It did not come up till I started my current regimen. I will say this - while I was under treatment, my liver swelling disappeared, and as far as the abdominal discomfort I had, it went away - during treatment. Of course it came back as soon as I stopped. Well, with my current treatment (not a cure
) I no longer have the swollen liver and the abdominal pain is largely gone again. A good condition. My goal here is to simply stay alive long enough to make it to the drugs that will actually cure me. I believe I am on that path now, based on my own response to LDN and the rest.
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.
Back to my WBC. They are currently still within normal ranges, although I see your ranges are not what I have read.
In any case, once again, I hope we all benefit from the new drugs that are coming out. 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. Good luck to us all!
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 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.
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.
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:
- 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.
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
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.
All i know is that u stay healthy and positive and eat well and wait till u can hit it hard with new drugs
doing the immune boosting suppliments also for what its worth,money well spent or not who knows but its worth a try
The interferon ribavarin did not cure me. It did damage my immune system, reducing my WBC count to 2.0. It stayed that way for years after TX. It was not until recently, after starting to taking a huge amount of immune boosting supplements, that I was able to get my WBC back up into normal ranges.
Since starting the program I outlined in my link, my viral load is dropping VERY fast. I feel great. My body is really ralllying.
No it is not a cure and I did not represent it as such. But the lower viral load does put me in a better position to treated by the next round of drugs coming out later this year.
I look at it from this perspective: If qty x of the virus can do x amount of damage, then have vastly more of the virus would do more damage. That seems to be reflected in my current condition. Its just common sense.
So no, I am not trying to say this is a cure. I do believe it has helped me a lot. If it helps someone else, then I am happy.
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.
Well thank you Samby - how encouraging. While I AM here , I will try and help people. What are you here for? Anything relevant to post, other than taking jabs at my login name? Sheesh!
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