Sonic-What do you think of the Chinese Medicine approach?

I know that the SOC is the only way to "cure" hep c. But what about those that can't tolerate this tx? What about people who have more than one condition, such as HIV, hemophilia, have had tx induced sarcoidosis, or retinal damage, or have an extra-hepatic manifestation that is worsened by interferon alpha?
If the group of people who can't tolerate tx can't stand the cure--what is the best approach to handling the disease? Just asking for your opinion. Someone recently posted re: The Hepatitis C Help Book which is co-authored by Dr. Gish and Dr. Misha Ruth Cohen. It's the combo of eastern and western medicine. I know I'm asking a pretty broad question here. Is there anything harmful to the Eastern approach?
Thanks for any of your valuable input.
Bug

[SonicBandaid]

Hi, ladybug52,
If Chinese Herbal medicine worked, the point-prevalence of hepatitis in some areas arounf Bejing, for example, wouldn't be 20-25%.

I have an open mind about these issues and the use of these agents but would like to see the questions posed and answered by properly conducted, scrutinised and analysed double blind controlled trials of the sort the do so well in the US and in Europe and Australia.  Anectdotal "evidence" is anything but.  I must say, I have not been that impressed by the data published to date.

Also, people should steer clear of this stuff unless they know EXACTLY what they are given and have cleared it with their Doc; I have seen people develop major liver problems (1 needed transplant, in fact) following exposure to these agents (especially those containing podophyllins!), and some sold in Asia actually contain old "western" drugs like phenylbutazone (a drug banned in Aus and the US for 30 years+ because it causes aplastic anaemia~=death).
Be careful!
Sonic

[Verdugo]

Wow, that's REALLY scary to hear, as I'm currently being treated with TCM!  Is there someone on this forum with personal experience of this that I could talk?  Also, do you know how many Chinese people are actually using TCM. For what it's worth, my acupuncturist (who was raised and trained in China) told me that "a lot" of people there use western medicine, not TCM (I'm thinking that would effect your statistics).

Thanks, V.

[ladybug52]

Thanks, that backs up what a friends dr told her. Nothing herbal as it can cause more damage, especially to someone with a deficiency in one of the blood clotting factors. I wish there were a "cure" or tx for those that can't tolerate SOC.
Bug

[Mr Liver]

The vast majority of China's 1.1 billion citizens live in rural areas where TCM is all that many have. The citizens would give anything to have access to Western medicine in  the rural areas. Anyway, China ranks dead last among industrialized nations when it comes to HCV and HBV. One in ten (!!!) people in China have been infected with at least one. That equals 110 million people (!!!) (40 million are HCV). This does not indicate to me that TCM works when it comes to controlling the virus.

A random inspection of Chinese imported herbs yielded results showing 1/3 were contaminated.Some of what was found: Unlisted plants, arsenic, lead, mercury, as well as drugs as Sonic mentioned.

It doesn't matter where or who you get them from. If they have not been analyzed there is no way to determine for certain what the true contents are.

Yours in truth,
Mr Liver

[SonicBandaid]

Yes. Its not common, but it is certainly occurs.  Its away of actually ensuring an effect of the TCM; phenylbutazone is a very powerful antiinflammatory effect.  it just happens to destroy your bone marrow 1 in every 2-10,000 times.  I don't want to be alarmist, and probably most TCM are harmless (other than wasting your cash), but this is not always the case, hence people should be really careful.  But being harmless isn't the same as being beneficial.

I have lost count of the number of people I have seen who tell me they take Chinese herbal remedies, and when I ask "and what is in them?" they have no clue (and were never told)!  I find it amazing people would ingest stuff without knowing what is was.  
cheers,
Sonic

[rosebud57]

how would one even know (a test), if something herbal were "laced" with something like that.

and what is in them?" they have no clue (and were never told)! I find it amazing people would ingest stuff without knowing what is was....
----------
hmmm.. sound a lot like a common generational experience of a certain era. not meaning to be "all inclusive"

[r4c7]

If I couldn't tolerate SOC--under any circumstances-- I might (and I do want to emphasis the word 'might') contact Dr. Wei de Ren and take his herbal treatment, understanding, of course, that his remedy might only buy time--and there could be serious risks associated with making that assumption.  

Eventually, however, I would think thatyou're going to have to face reality that even with protease and polymerase inhibitors coming, these drugs will most likely be administered in conjunction with the current approved FDA drugs--and may not be any more tolerable.

This idea of playing the waiting game with hep C can be a real shot-in-the-dark proposition if you've had the disease for many years.  Better talk with a good hep C doc that thoroughly understands your situation before you make any decisions--one way or another.

My 2 centivos.
    

[SonicBandaid]

Well, you wouldn't and couldn't know unless the chemical analysis had been done.  I have seen the analysis on some stuff confiscated when it was brought into this country, and I know what has been found.
"Natural remedies" bought at reputable health food stores / chemists in the US (or here) shouldn't be an issue (at least in terms of being laced with toxic exogenous chemicals anyhow), but I still don't think they have much to offer in terms of preventing HCV progression or clearing the virus.  I would like to be proved wrong, but there has been no suggestion of this in the scientific literature.  I agree with r4c7; see an experienced Doc, but at the moment IFN/Riba

[pigeonca]

What about oxymatrine?  I know that Hepatitis Researcher deems it worthy of consideration, and his opinions are not to be taken lightly.

[SonicBandaid]

I haven's seen any data, but will look.

[SonicBandaid]

re "BTW do they teach you guys in med school to slowly walk backwards out the door while talking, and close it quickly when the patient blinks :) Forgive me, you know I'm just kidding (sort of) but as long as we're on the topic of "sniping" I thought I'd exchange some friendly fire. Please take the comments with affection."

Of course! "Walking backwards and door closure 101" is basic training, first year med school.  Actually it

[meki]

Everything that you put into your body, including sugar, herbs, etc. has some sort of pharmacological effect.

Chinese Medicines or any vitamins, different foods etc. will have varying effects on you and your body.

Medicines were created from herbs, etc. Until larger pharmaceutical companies came along and learned how to synthesize or create new chemicals that created reactions.

Remember very carefully - that everything that is known today - was brought about by human history.

So in other words - it really depends a lot on who and what you trust.

Whether you like it or not, pharmaceutical companies are in the business to make money... and so are companies that sell Chinese Medicines.

Just different packaging.

And ALL medicines have side effects - and problems.

Anything that changes you has an effect.

It truly depends on your research, your belief system and your body's ability to adapt and change...

Personally - I prefer big pharmaceutical companies... Even though I think at times they are "evil" conglomerates... But it's just a personal choice because I believe that there are more trials and understanding of the chemistry with them.

I'd be very wary on traditional or more homeopathic medicines - and skeptical on non-trial based pharmaceuticals.

Good luck either way.

[jmjm530]

I agree with some of Sonic's points including not enough double-blind studies and sometimes questionable quality control/toxicity, not to mention the fact that some who badly need SOC may delay it too long because of TCM.

That said, if I were in a Watch N' Wait mode, or if the SOC approach didn't work, I'd consider researching out Chinese Herbs and/or a practioner of TCM like Misha Cohen in CA (wrote book with Dr. Gish) or Dr. Zhang in NYC, who I believe is also a medical doctor.

Sonic...A "stupid" internet question that hopefully won't have you walking backwards into cyberspace :)

A couple of years before I treated I tried some bulk Chinese Herbs (didn't have a clue what was in them) and almost right away my enzymes (ALT, AST, GGT) went from slightly elevated to close to 1000. (I should also add that I had the Hep B vaccine the same week so there was some discussion with my doctor if it was the herbs, the vaccine or a combo). But nevertheless, my doc likened the incident to an acute attack and treatment was delayed until the enzymes came back down to baseline which took many months.

HEY, STOP BACKING UP, THE INTERESTING PART IS COMING...

Ok, my viral count before this all happened was over 30 million. My VL after the enzymes returned back to normal (actually a little over a year after since I didn't test VL very often then) was 185,000. Is it *possible* that in some ironic way, the acute reaction (probably caused by the herbs) ramped up my immune system and reduced my VL, much like the immune system is ramped up with true acutes who sometimes clear the virus with only their immune system? And if so, are their any clinical implications in this -- of course, not suggesting that anyone buy herbs from my guy. LOL. Anyway, would like your input before the nurse knocks on the door.

-- Jim

[rosebud57]

bug - that was a really good question.

sonic-  "and some sold in Asia actually contain old "western" drugs like phenylbutazone"  are you saying that they add these drugs to the chinese herbs?

[SonicBandaid]

Yes.  I think that sequence of events is extremely interesting and very important.  Not sure if it was the Chinese herbs or whether you has a spontaneous (but rare) flare in your HCV.  A hepatitis flare is a well recognised event that may presage clearance of HBV, but I havent seen it occur with HCV to that degree.

My money is on the Chinese herbs.  I have seen this rise in ALT to ~1000 a couple of times with "herbal remedies", in two people without HCV.  Could be the grossly elevated transaminases "ramped up" your immune system, perhaps by releasing HCV proteins that then cause a more focussed immune repsonse, but it could also be the release of HCV proteins (especially envelope) results in inhibition of viral replication. This is the basis of the Replicative Homeostasis concept.

It might also be an unrelated event; if for example, you contracted EBV or HBV hepatitis (hypothesising now, I assume you were vaccinated against HBV!?) then seond viruses are known to be inhibitory to one another (this is well documented for HCV/HBV/HIV and HIV/MEASLES co-infection, for example) and it may be the second virus might have downregulated the replication of your HCV.  Personally, I believe this occurs through inhibition of the HCV viral polymerase, but alternative explanations include triggering the innate cellular defenses, including interferon and other cytokines.

The clinical implications, in my view are important, and I really think your response really implies that other anti HCV therapies should be possible, and that your particular strain of the virus is susceptible to this method of attack.  Clinical observations of this type were responsible for the original discovery of interferon (and if you think about it, a conceptually similar observation lead to the discovery of penicillin).  heres to the discovery of the HCV "penicillin".
Is that the nurse I hear softly knocking?
Cheers,
Sonic

[Kit07]

An extraordinary dicussion.  How I wish there were more of this caliber. sigh.

To Sonic: is there a typo in your last post? I quote you saying:

"I don't know" suggests to me your hepatologist is being entirely honest about our state of uncertainty about this disease. You should be wary of people who content with their state of understanding, especially about hepatitis C, and don't know that they don't know."

May I inquire as to what you meant to say??  Did  you mean to say this: you should be very wary of people who ARE content with their state of understanding, especially about hepatitis c...?"   Or did I miss something?

Sonic your contibutions here are rare pearls and gems in a in a  vast wasteland of confusion.  you too jmjm,   Pearls and gems in rationale soup. with room for inriguiging and perhaps mysterious agents,   Thank you.  

Kit

[jmjm530]

I will have to go over the dates again of enzyme tests, date I started herbs and heb b vaccine, but last time I analyzed them, it was difficult to figure out which of the two may have caused the flare since I started both within a week of each other. Since the enzymes rose a week or so later, I would rule out "spontaneous flare" -- just too coincidental to have a spontaneous flare a week or so after Chinese Herbs and a Hep B vaccine after close to thirty years of stabalized enzymes in the slightly elevated range.

FWIW, I was infected close to 30 years ago and then went through an acute stage--elevated enzymes, jaundice, wine colored urine, white stools, extreme fatigue requiring bedrest, etc.  Over the next five years or so, I had 2-3 relapses -- normal enzymes and felt fine and then back to very high enzymes, jaundice, etc (vigorous exercise seemed to trigger the relapses)-- then finally things stabalized for next 30 years in spite of vigorous exercise. This perhaps shows that my immune system did launch a vigorous (but failed) attack from early on.

Also, my Hep B vaccine never took -- don't have the antibodies -- but I recently started the series again  -- the hep a/b combo vaccine -- and have had my second shot in the series of three. No rise in liver enzymes this time. Lastly, as stated, there was a gap of a couple of years between the 30 million plus VL and the 189,000 IU/ml, therefore it's possible that the viral load might have decreased on its own during that period of time, regardless of the the flare inbetween although as discussed, the connection might just be there. Perhaps in a sense the mechanism is similar to a vaccine but in my case the "herbs/vaccine" induced sort of a full-blown case? Related, I've thought for some time that some sort of vaccine approach would be the kindest solution for treating those with HCV. I know they were/are working on something like that in your part of the world.

-- Jim

-- Jim

[SonicBandaid]

Yes, as I said, spontaneous flare was pretty unlikely.
The effect of HBV on HBV viral replication is not contingent on an immune response; I looked at this about 12 years ago and it actually inhibits HBV polymerase directly in a genotype-specific fashion.  It is possible, if thios is the case, that other vaccine (that may be of a different genotype) may not exert the same effect. Again, unproven hypothesis on my part.

I happen to believe that therapeutic vaccination (that is, using high doses of viral proteins in sufficient quantity to inhibit viral polymerase) will be a way forward in antiviral therapy

[anise]

For 5 years I was treated with Chinese herbs from a very reputable Doctor here in Seattle.  He is the most thoughtful, insightful, intelligent, and kind doctor that I have ever visited.  He was a viral Doctor in China - his wife was a surgeon.  They came over here many years ago, and they have a reputation for healing the most difficult cases of many diseases.  People come to him after the medical establishment has failed them.  I have heard much of their testimonies and some quite sad.  

Dr. Wang explained every single herb he uses (which I researched, etc.).  Just wanted to say that I was the healthiest I had ever been taking those herbs.  My enzymes went down in the low teens.  The only reason I switched to the western treatment is that I wanted to get rid of the virus.  In essence, I got tired of heating up the herbs - which smell and taste like a primal forest floor.  When I went off the herbs my enzymes usually rose again.

Personally, I am not sure I will ever treat again.  It was so harsh and horrible!

Do Chinese herbs cure you - no, and Dr. Wang agrees.  His philosophy -  western society tries to eradicate all virus's.  In eastern societies, they help you live side by side with the virus.  His claim is that virus's are all around us.  I tend to agree with that.

This is my humble opinion :)

[Verdugo]

Hi Mr. Liver,

Just wanted to respond with my two cents:  

"The vast majority of China's 1.1 billion citizens live in rural areas where TCM is all that many have. The citizens would give anything to have access to Western medicine in the rural areas. Anyway, China ranks dead last among industrialized nations when it comes to HCV and HBV. One in ten (!!!) people in China have been infected with at least one. That equals 110 million people (!!!) (40 million are HCV). This does not indicate to me that TCM works when it comes to controlling the virus."

The amount of people infected with HCV does not have anything to do with how effective TCM is, does it?  My herbalist told me straight off, that she can't "cure" HCV and TCM does not claim to do so.  This leads me to a question:  Once an individual has acheieved SVR using Tx, are they no longer part of the HCV statitistics, since technically you may still be harboring the virus (even though your load is infintesimal)? I"m referencing to the thread on this forum entitled:  "Does HCV Ever Really Go Away?"

"A random inspection of Chinese imported herbs yielded results showing 1/3 were contaminated.Some of what was found: Unlisted plants, arsenic, lead, mercury, as well as drugs as Sonic mentioned."

I don't doubt this is true considering the recent Chinese imports of pet food and toothpaste-scandal and it's definitely a big concern for me.  I would love to get a URL to study this more closely.

Thanks,
V.

[Verdugo]

Hi Anise,

I think I'm at where you were before you started Tx.  I'm going to an acupuncturist/herbalist and seeing improvements in my overall health and fascinated with the process.  Although I don't mind the taste of the herbs, I do feel confined to home to brew the tea as well as being frustrated with schedule of taking the pills with/without food, at inconveient times etc.  (All this would be near impossible to do if I was working which I hope to be doing soon).  So, I'm thinking that at some point, I will indeed start Tx.

You said your ALT/ASTs were lowered to normal levels with the herbs.  I'm wondering how high were your ALTs and how long did it take to for them to nomalize.  I had a test in January  (ALT:  129, AST:  84) and then another one in May (ALT:  111, AST: 64), after four months with TCM.

Thanks, V.

[anise]

Hi Verdugo,

When I first learned I had Hep C, my enzymes were in the high 80's to 100,  after treating 6 months with the herbs the enzymes went down to the  30 and 40's, then into the low - high teens.  

BTW, I didn't take the herbs in pill form but rather the 'leafy, root-y, fuzzy' type.  It took about an hour and a 1/2 to cook the herbs every day.  Dr. Wang said it was more effective in that form.  Although, I have a friend who has been taking the pill form of herbs for years.  Her enzymes are now in the teens.  Before,  her enzymes were very high.  She will not take the Peg treatment as she had stomach cancer when she was 34.  Her health is delicate and she doesn't weigh a whole lot.  She has been taking the herbs for 6 years.  After her last biopsy the liver condition did not change at all.

Keep me posted on how the herbs work for you.  

[Verdugo]

Thanks so much for your post.  It's really helpful to hear someone speaking from personal experience.  I don't doubt that others have had less successful experiences than you.  I would love to hear from them as well.  

Thanks again, V.

[ladybug52]

What about another complicating factor like a deficiency in a blood clotting factors? How would anyone know what's safe? I guess it's safer to not dabble in any kind of alternative tx. So that leaves what......? ANY input would be appreciated.
Thanks all,
Bug

[anise]

Ladybug, I'm not sure of your question?  

Chinese medicine addresses many different deficiencies.  Dr. Wang is very careful, double checks blood work, even draws blood work himself at hospitals for those who want him to.  So far he has not harmed anyone.  Maybe some herbal doctors are not that careful or authentic, but there are many that are.  I would guess that someone looking for a good doctor, whether herbal or otherwise, would look for the best.  I know I did when I went to get treatment.  I dropped those that didn't inspire confidence.

BTW, I enjoy immensely talking with Dr. Wang, he has so much knowledge of both western and eastern medicine.  Great stories also.

[orphanedhawk]

   How would anyone know what's safe? I guess it's safer to not dabble in any kind of alternative tx. So that leaves what......?
   It leaves your gut instincts.
    If we weren't going to take anything that isn't proven safe, why are we doing tx? ( Yes, I know to get rid of HCV.) Safe? Like Russian Roulette.
    I use herbs and supplements for sides and to boost my immune system. I don't know if it works but my heptologist says," I don't know," more than my herbalist does.
  

[SonicBandaid]

saying "Idon't know" suggests to me your hepatologist is being entirely honest about our state of uncertainty about this disease.  You should be wary of people who content with their state of understanding, especially about hepatitis C, and don't know that they don't know.
Cheers,
Sonic

[SonicBandaid]

PS I suspect it is POSSIBLE that your HBV vaccine (which is after all HBV surface protein, more or less) might actually have some effect on you HCV replication in the same way it inhibits HBV replication.  I am in the process of testing this, but I doubt it would have caused your elevated transaminases.  Just a hypothesis.

[SonicBandaid]

Dear Kit07,
Thanks for that.
Sorry, I phrased that rather clumsily.  
What I mean is that there are major areas of medicine that we do not fully understand, or that we have insufficient data to say anything about with confidence or dogmatically.  Anyone who does express dogmatic views in these areas is a charlatan.

The first step, in my view, in addressing this imperfect situation is a little humility and admitting when you don't know something, and taking steps to seek the answers.  A corollary of this position is that if you see a Doc who claims he is the best or knows ALL the answers or that his procedures are always perfect and uncomplicated, seek another opinion as no-one with any insight would claim this.
Just my opinion,
Cheers,
Sonic

[Kit07]

Sonic:  Got ya.  My post was clumsy and  full of typos!  (sheepish grin).  I have never encountered a doc who proclaimed to know all, but I do have a couple who get defensive when I even subtly question their recommendations and have solid information to back up my questions.  I suspect they get bit insecure around the edges (who wouldn't when treating this disease!).  I am learning how to pose my ideas in the least offensive ways .  It is a tricky dance.  I  suppose doctors are trained to project an air of authority in order to maintain their confidence and that of their patients.  I do find it annoying when they insinuate that there is no information of value on the internet, or that patients aren't capable of making intelligent judgement about what they read.  Complementary medicine,  for example.  Maybe soon docs will become comfortable suggesting reliable websites to their patients (?).  Occasionally one of my specialists will write down some keywords for me to look into, which has been helpful.   It  gives me a sense that I can contribute in some way, rather than being a passive recipient.  

I often wonder how clinical medicine has been affected by the arrival of the internet.  It seems doctors now would be forced to cope with patients armed with so much more information - some of it junk, some dangerous and some accurate but fragmented.   Consider writing a book about this (in your spare time)  We'll all pitch in with our valuable opinions :-)

Anyhoo thank you again for your contributions.  

Kit in Montana

[SonicBandaid]

Dear Kit07,
I actually encourage my patients to use the internet to research their disease/problems.

BUT, I do steer them to reputable sites to start with, and have a list of URLS for each disease process; I generally get them to start with the NIDDK page of the NIH, the Johns Hopkins and mayo Sites, the HepC support sites (for example: http://www.hepcaustralia.com.au/) and work down the links from there.  As we all know, some sites, like the lloyd wright thing are counterproductive, but most people are sufficiently internet savvy to realise there is a ton of cr@p there anyhow.,

I am convinced patient "education" (probably information sharing might be a better term) of this type enhances the effectiveness of therapy by increasing complicane (although I am not sure this is proven) and reduces the side effect profile.
Cheers,
Sonic