traditional (?) chinese meds?

[scabby]

hi folks...im a relative newbie here, and only posted a few times, but i have some new news. i told you all about how i was so successfully treaded last year in china (if you read about it..), and was banned for spamming. i was only telling it as i see it. anyway, i have returned to my previous levels of p (see last post by me) and the same treatment/meds are having no real effect this time. i went to the doctor again today, and she gave me some new stuff based on the premise i have acclimatized to life in china...have been here 3 years, eat the food, etc. anywhooo...she says this new stuff will clear me up in two weeks! i know we have all heard this line before, but i believe it here because the chinese have a whole different approach to medicine than western derms. they actually try to address the cause, not treat the symptoms. i will keep you posted on my progress in this thread, for those of you are interested in a real way to fight this horrible affliction.

have a nice day

chris

[GitOverIt]

Looking forward to hearing from you...and hope it is successful!!!please keep us informed:D

[coachG]

Hi Chris....welcome back!! Sooooooooo, what is this new "stuff"???? :)

[Anon1234]

I've heard many great things about alternative treatments from around the world for all kinds of things. This from people from other countries or people who have travelled.

And I don't mean alternative treatments available here in North-America. Or bio-stuff, I mean real traditional treatments used by previous generations.

I've always had a theory that maybe, just maybe the big money making machines here only offer products to temporaraly cure symptoms so you'll come back and buy some more medicine later. Who knows.

I wish you luck over there in China with their 3000 year old remidies.
Keep us posted!

[chelsear76]

i have been interested in chinese medicine for a while, and tried to seek treatment in China (I was living there last year). But since my mandarin is awful, i couldn't communicate with the doctors.

I tried a few accupuncture sessions back here in the US, but it was just sooo expensive, and required several sessions a week...so i quit.

please do let us all know how your new treatment goes!!!

[IrisfromSpain]

Hi Chris !!

Best of luck and please keep us posted on how you are doing.

Sunny regards from accross the ocean.

Iris :)

[Buck5150]

I agree that Dermatolgists more or less treat the symptoms, not the cause. I'd love to know what it is you are using or have used succesfully.

[scabby]

ok, i started the new meds last night, and i can see a differnce already. this morning, new scales were not forming, but it was a rough night. the medicine comes in the form of a dark bitter liquid that i have to heat up and drink, the salve is the same stuff..i got 10 more small containers of it, also there is some "shampoo" i have to mix with water (1 part cleaner, 10 parts water...smells like rubbing alcohol, also a dark color) and there is some oil for after i shower that smells like peanut oil. i should mention that the p has appeared on my penis, and the shampoo and oil are for that. i say it was a rough night because i only got 3 hours of sleep...i woke up in alot of pain, super itchy...this is a first for me, and its because of the medicine i drank, i can feel it in me...if that makes sense...it also tastes terrible...very foul! but...if it works, who cares! id walk on fire for miles to get rid of this! im sorry i cant say whats in this stuff...but i will try and find out and post that...i can speak chinese...but reading it is a whole other game. i also want to mention, i had an excessive amount of post shower pain today, as i scratched most of the scales off my legs, and it was a raw and bloody mess...but im hoping that a nice relaxing weekend, and the new meds will have me feeling better by monday. ill let u all know.

have a good weekend...
chris

by the way, i also have a question...when i scratch alot, it bleeds some, but there is also a clear liquid...anyone know what that is??

[EdR]

Chris,

Please let us know what is in the mix. Also, please be careful. Although many Chinese herbal treatments may be safe, there are some that are the equivalent of powerful systemic medications and can have nasty side effects.

BBC (1999) Chinese medicines still a danger (http://news.bbc.co.uk/1/hi/health/1567212.stm)

BBC (1999) Herbal remedies contain steroids (http://news.bbc.co.uk/1/hi/health/286105.stm)

FDA (2000) FDA Concerned About Botanical Products, Including Dietary Supplements, Containing Aristolochic Acid (http://www.cfsan.fda.gov/~dms/ds-botl2.html)

BBC (2000) Chinese herb cancer warning (http://news.bbc.co.uk/1/hi/health/797230.stm)

J.Gastro Hepatol (Dec 2002) Acute hepatitis induced by traditional Chinese herbs used in the treatment of psoriasis (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12423285&dopt=Abstract)

[soloist]

The MedLine site you referred to Ed shows 932 pages of 20 entries each for the search words "drug induced liver disease". Only a minute percentage of these entries refer to Chinese medicine.
The vast majority are about commonly prescribed drugs, indeed, if you read the CPS, which is the official bible of prescription drugs on the North American market (about 75,000 I would guess), one of the many, many side effects is liver damage.
I wonder why we are not so aware of these potential dangers when we are prescribed drugs. In contrast, there seems to be enormous bad publicity about alternative treatments.
I was prescribed a beta-blocker for heart problems, and took it against my better judgement. I felt awful, and developed psoriasis as a result of not listening to my intuition. Plus, I decided the doctor was more knowledgable than me, and surely he would have known of and warned me of the dangers.
This was far from the truth, and I have learned my lesson.
Don't assume that the medical establishment is protecting our health. It is up to us to do that, and if something works for you, keep at it. There seems to be an effort to stop people from trying out remedies other than drugs. Many life threatening drugs are not taken off the market with the speed of alternative medicine.

[Anon1234]

The medical world is out there to make money.
If they start curing people 100% they won't make money on subscriptions.

"Lets give patients something that works, while we work on something else... when they come back in a year and effects have worn off, we'll sell them this..."

[EdR]

Soloist,

You wrote:

The MedLine site you referred to Ed shows 932 pages of 20 entries each for the search words "drug induced liver disease". Only a minute percentage of these entries refer to Chinese medicine. It doesn't work that way. PubMed (http://www.ncbi.nlm.nih.gov/entrez/query/static/overview.html) does not perform classic prhase searching (http://www.ncbi.nlm.nih.gov/entrez/query/static/help/pmhelp.html#PhraseSearching). If you enclose a phrase in double quotes, the Entrez/Pubmed search engine will try to translate a phrase if it is in the MESH index of searchable terms database (which your phrase is not). It will then ignore the quotes and process all the terms separately. What you really performed was a search on all articles containing the words "drug", "induced", "liver", and "disease". By the way, did you notice that the first hit was for Ma Huang induced hepatitis?

The vast majority are about commonly prescribed drugs, indeed, if you read the CPS, which is the official bible of prescription drugs on the North American market (about 75,000 I would guess), one of the many, many side effects is liver damage.The vast majority of articles are about commonly prescribed drugs because commonly prescribed drugs undergo rigorous clinical trials and double blind studies that are published in the peer reviewed journals covered by Medline/PubMed. Up until recently, Chinese herbal medicines, and herbal medicines in general have not. So it's a very simple answer - you don't see warnings because for the vast majority of natural treatments, scientific testing has not been performed. I don't know what the acronym "CPS" stands for. Are you referring to a publication by "Comprehensive Pharmacy Services"? The Physician Desk Reference (http://www.pdr.net) (PDR) is the most standardized source of information on prescription drugs in the United States.

I wonder why we are not so aware of these potential dangers when we are prescribed drugs. In contrast, there seems to be enormous bad publicity about alternative treatments. If you use this (the NPF) forum's search tool and search on variations of the string "chinese medicine", "chinese herbal" and "chinese herbs" you'll see that there are about 15 threads discussing this topic, all together including a total of about 90 messages. Not a single message contains any warnings that there may be risks associated with these treatments. I posted the only message in this entire forum database containing links to news stories reporting on such risks. Why do you think that is inappropriate? Do you believe that people should not be made aware that a risk exists?

I was prescribed a beta-blocker for heart problems, and took it against my better judgement. I felt awful, and developed psoriasis as a result of not listening to my intuition. Plus, I decided the doctor was more knowledgable than me, and surely he would have known of and warned me of the dangers. This was far from the truth, and I have learned my lesson.
Don't assume that the medical establishment is protecting our health. It is up to us to do that, and if something works for you, keep at it. There seems to be an effort to stop people from trying out remedies other than drugs. Many life threatening drugs are not taken off the market with the speed of alternative medicine.I'm sorry you've had bad experiences with prescription medication. I have too. But that doesn't change the fact that there is a system - even though it is (inevitably) flawed, to test and review prescription drugs and there is none for herbal supplements. When the Dietary Supplement Health and Education Act (DSHEA (http://www.cfsan.fda.gov/~dms/supplmnt.html)) was passed in 1994, anything categorizable as a food based supplement (http://www.cfsan.fda.gov/~dms/ds-oview.html#what) was removed from direct regulation by the FDA. The only regulatory power they now have is with respect to medical claims on the label. That limitation applies until people start to get hurt, and even then, the FDA has to go to court. Ma Huang, which contains ephedra (see the first hit on your Medline search) has been causing deaths for years, but the FDA has been unable to get it off the market or require appropriate label warnings. As long as the labeling of a dietary supplement doesn't make unproved medicinal claims according to the formula of the law, a manufacturer can sell literally anything that falls into the allowable category, and sometimes even things that don't. There is also no general requirement that adverse effects or drug interactions be listed on the label. As long as the warnings aren't made available by the manufacturers you will see people like me have to refer to newspaper stories and FDA alerts to point out risks associated with supplements. If you want to know the risks associated with a prescription med, you can just read the label or online go to the FDA site and find the published information on that medication.

Anon1234

I don't buy your "evil intent" argument. Any company that produced a cure for psoriasis would do incredibly well. It's also inconsistent to apply the "money" argument to big pharmas and not apply it to the many companies popping up all over the internet selling natural treatments. Of course money is a consideration for all of these companies. That's why they should *all* be regulated. That's why the pharma companies are regulated. You won't have an argument from me about the need for that regulation. Would I have an argument from you if I suggest that companies selling dietary supplements should be subject to similar restrictions?

[scabby]

hi folks...thats for the response, support. i appreciate your concern, but i am told the meds are 100% herbal, i will still try and determine the exact ingredients. one of the things they gave me smells like rubbing alcohol...but the part i drink is the real key i think. its made from some kind of plant, boiled like a soup. the chinese really have very few chemical based meds...its a different philosophy here, i havnt been given pills or injections...just soup and creams...all made from some kind of plants. my doctor specifically told me there are no side effects, whereas ive been given stuff back in canada that was carcinogenic...gah!
anyway...its been 3 days now...its not gone, but it definately shows signs of weakening, and im getting used to the aweful taste of the drink. i would also like to mention, that i have always believed that this (p) is something that needs internal treatment, not just some creams that u rub on...its much more than just some bad skin, its inside us. western docs have never given me pills, or soup, or anything to injest, but it seems a basic and integral part of the treatment here. just makes more sense to me.

my 2 cents,
thanks for listening.
chris

[Zara]

quote from soloist:
--------------------------------------------------------------------------------
I was prescribed a beta-blocker for heart problems, and took it against my better judgement. I felt awful, and developed psoriasis as a result of not listening to my intuition. Plus, I decided the doctor was more knowledgable than me, and surely he would have known of and warned me of the dangers. This was far from the truth, and I have learned my lesson.
Don't assume that the medical establishment is protecting our health. It is up to us to do that, and if something works for you, keep at it. There seems to be an effort to stop people from trying out remedies other than drugs. Many life threatening drugs are not taken off the market with the speed of alternative medicine.
--------------------------------------------------------------------------------

I'm curious as to how you determined that taking a beta-blocker for high blood pressure caused you to develop psoriasis?

One interesting thing that I've noticed since joining this forum is that folks who use prescription medication and treatments prescribed by the medical community ("establishment" in your words) quite frequently discuss side effects, caution other people abt treatments that should not be used together, tell people that different drugs work for some people but not for others and so forth. People who post about so-called alternative treatments seem to virtually never do that, beyond saying that an oral concoction did not taste very good. Recently, someone posted about some potential negative side effects of taking turmeric, after multiple posts about the benefits of using turmeric as a treatment for psoriasis, which seem to come as a surprise to some of the alt-med enthusiasts. While I personally do not think that turmeric either relieves psoriasis or causes significant illnesses given that 100's of millions of Indian people use it in cooking every day, but still have fellow countrymen who do develop psoriasis, this post abt the possible impact of taking the spice in large quantities was one of the few that I've seen of that type.Usually, the alt medicine posts speak only of great results or interesting theories.

And scabby, the fact that any substance is 100% herbal/natural means just that, that it contains 100% of herbs or plants are included in the mix. Belladonna (deadly nightshade), hemlock, peyote and opium (to name just a few) are all herbal or natural, but taking them wouldn't do someone much good.

And for the record, I do think pharmaceutical/medical companies should be better controlled, such as limiting the approval of drugs which are very similar to each other (I don't think the world needs 5 versions of Viagra) and perhaps should be required to meet certain standards in terms of how much of their revenues should be plowed into R & D. (By the way, a lot of medical treatments also come from federally funded researchers' projects who don't have the same type of profit incentives. I think Anthony Fauci would probably give up his right arm if it meant finding a vaccine to prevent HIV/AIDs, for totally altruistic reasons.) But in the end, when it comes to my own health, I'll take my chances with the folks who developed vaccines to prevent polio and smallpox, defibrillators to keep hearts beating, stents to keep clogged arteries open, and now mundane drugs such as penicillin to prevent infections.

[GitOverIt]

come on over to the "ALTERNATIVE THREAD"

I'm looking forward to hearing your outcome...don't think I'll be going to China if it works ....but then I'm not going to go to the dead sea either:D

have all you newbies read our post from member services?......I gave it a boost so that we could all refresh the post sent by MS's on "a message about alternative treatments".....

for a while it was working well!!!!!

[MikeK]

Originally posted by Zara I'm curious as to how you determined that taking a beta-blocker for high blood pressure caused you to develop psoriasis?Hi Zara,

I don't doubt that Soloist's psoriasis was triggered by a beta-blocker. Some beta-blockers are known triggers for psoriasis. It's included in the NPF's discussion of Psoriasis Triggers (http://www.psoriasis.org/facts/triggers/). Everyone and their p is different, but Soloist is not the only one who posts here who either developed psoriasis or had their's get worse after taking a beta-blocker. Here's a link to a very informative thread on the subject: http://www.psoriasis.org/forum/showthread.php?threadid=3503.

Mike

[MikeK]

Originally posted by GitOverIt
have all you newbies read our post from member services?......I gave it a boost so that we could all refresh the post sent by MS's on "a message about alternative treatments".....

for a while it was working well!!!!! Here's a link to the thread that Sally referred to: http://www.psoriasis.org/forum/showthread.php?threadid=5304&perpage=25&pagenumber=1

[GitOverIt]

Mike, Mike, Mike you are the best diplomat!:D You are in the wrong profession....(accounting?) where, out in the field working with people, would be better suited....in my opinion:D

I always look forward to your posts (and answers) cause you have a way of not stepping on toes (like me..foot- in -mouth disease) and of making all our newbies welcome.... and I notice you do keep up with the alt-treatments thread...good!....
There are two new urls on sun lamps (tanning beds) and sunscreen that I posted....what are your thoughts on the tanning beds? I was hoping to try one out but...........? doesn't sound too reliable.....:eek:

[scabby]

hi folks, its been almost a week with the new meds, and im not doing as well as i had hoped, but i continue to see small improvements. i will go back to the doctor again after the end of 2 weeks and let her check me. im glad my work schedual is light, and allows me plenty of time to relax. like i said, i havnt made the kind of improvement i had hoped for, but its still early...i guess thats all.

[scabby]

its been almost 2 weeks now, i go back to the doctor in a couple of days. i have made some improvements, but not as much as i had hoped. i asked about what's in the stuff they gave me, and i was told its an anceint chinese secret. the hospital wont divulge the ingredients for fear that another hospital will copy it, and profit by it. either that, or they dont want people to make it themselves, or find out its only something common...whatever, they wouldnt say whats in it.

[EdR]

Scabby,

It is unacceptable that the people who are giving you this herbal medication will not tell you what the ingredients are. I believe that in the U.S. this is against the law. Herbal medicines can be just as potent as synthetically derived drugs and have the same type of issues, but without the regulatory protections. If your "doctor" will not provide you with a list of the ingredients, their history and efficacy, known side effects and drug interactions, then I would view this as a very large red flag. These are the same questions that any of us should expect our care giver to answer whether that care giver practices Eastern or Western medicine.

I've been poking around the web looking for on-line resources containing information about traditional Chinese medicine. There are a number of practioners and institutes that have web sites. Of those that I visited, one site did seem to be more focused on providing in-depth information, positive and negative about available treatments. I certainly don't know enough about them, or Eastern medicine to recommend them. That said, here is a URL:

Articles about safety (http://www.itmonline.org/safety.htm)

Here are some other online resources worth checking out:

National Center for Complementary and Alternative Medicine (http://nccam.nih.gov/health/supplement-safety/)
NIH: Botanical Dietary Supplements (http://ods.od.nih.gov/factsheets/botanicalbackground.html)
WHO Medicinal Plant Monographs (http://www.who.int/medicines/library/trm/medicinalplants/monographs.shtml)

If you check out these resources you will see that not all herbal treatments are created equal. Some may be relatively safe but still have side effects and/or drug interactions. Some may be accidentally contaminated with dangerous substances. Some may deliberately contain dangerous substances. Please be careful!

[scabby]

thanks edr, i couldnt agree more...i thought it was a bit odd they wouldnt tell me. i went back to the doctor yesterday, and had a chat with her, she gave me a new prescription. i was apparently having an allergic reaction to the first (actually second round) of meds. my forearms and stomache had developed a peculiar ichiness, which although uncomfortable, i was not really worried about. she gave me some new stuff, and i noticed on the prescription there was actually a list of ingredients which i am having translated. she aslo gave me something for the "reaction" which has immediately reduced the itchiness. i also bought a humidifier, because the air here is very dry, and i was hoping that would help to some degree. the new stuff she gave me is only oral...ie something i drink, brewed from 12 different things, plus i add some ground antler of some sort...like i said, i will have a complete list of ingredients as soon as i can have it translated...i expect something like, hair of bat, eye of newt...you should have seen some of the stuff they put in the bag! they filled a bag with all this odd looking stuff...and i had to take it to another part of the hospital, where they brew or boil it into some kind of drink, bag it, and i came back after a shopping for a few hours, and picked it up. it's even more horrid tasting than the the last batch if u can believe it! uggg! but i still have more faith in this than all the western meds ive ever seen. does anyone honestly believe the p will go away with only some creme? i think it need to be fought from within...

anyway, ill let u know how it goes, and post the actual ingredients soon...

merry christmas!
chris

[GitOverIt]

All I can say is "you are braver and bolder than i could ever be.....eweeee"

of course we use lotions, make-up and etc with urea (urine)

[EdR]

Chris,

Most people with moderate to severe psoriasis no longer use creams as their primary treatment. They use systemic medications (http://www.psoriasis.org/treatment/psoriasis/systemics.php), biologics (http://www.psoriasis.org/treatment/psoriasis/biologics.php), and phototherapy (http://www.psoriasis.org/treatment/psoriasis/phototherapy.php).

Systemic treatments are serious medications with different known risks. These risks are described on the labels and in the literature so you can discuss them with your doctor and make an informed choice whether or not to use them. Biologics are derived from very large molecules that are too complex to synthesize, and instead are produced by living cells in the laboratory. They are expensive, and most people can't afford them without insurance. Their known risk profiles are less than for most systemics, but they also have unknown long term risks because they are so new. That said, some people with severe psoriasis have found biologics to be the only effective long-term treatments they have ever used. Prescription phototherapy using ultra violet light can also be an effective treatment for some people. I use home UVB myself, and I don't need to take any medications. Narrow band UVB and PUVA treatments can create remissions that last for several months. There are also other new treatments under development.

Not every treatment works for everyone - that's true for all psoriasis treatments. The point is that there are many treatments that are probably safer and more effective than unknown herbal concoctions. If you feel strongly that you can only use "alternative" treatments, have you considered diet? As long as you are maintaining proper nutrition, an elimination diet protocol is relatively harmless. Following is a link to the most credible online discussion I've seen on the topic of diet and psoriasis. The diets that are discussed are less restrictive than some well known protocols being promoted in books and on web sites. The panelists are a physician and a Ph.D. nutritionist:

A panel discussion on Psoriasis and Diet (http://www.healthtalk.com/psoriasis/talks/edition11/index.cfm).

[scabby]

thanks again edr, you have done a very good job of explaining some of the things ive not been quite sure about...ie biologics. i was prescribed some uv treatment years ago in canada, but didnt have the time to go the hospital everyday...perhaps they can do it at home now? i think its time to look into something else. the new meds ive got dont seem to be doing a good job, and im losing patience with this, plus im having some kind of allergic reaction, even though ive never been allergic to anything in my life. my forearms and stomache are itchy, burning...looks like the p is spreading...but it might be something else. i think the next logical step is to find some practioner of the magic arts...a shamman, or witchdoctor perhaps. im off to thailand in a couple of weeks, maybe lying on the beach and drinking rum for 2 weeks will help! :D

i wish i had more positive news to report about all this, but thats the way it goes sometimes.
chris

[dizzycat]

I spent 5 weeks in Hong Kong in summer 2003. My psoriasis had cleared up 95% for the first time since I've had it, by the time i returned to England. I stayed clear for a couple of months. My skin's back to it's usual worst now and I'm considering a permanent move to HK.

[scabby]

i decided to stop all the meds, something was making it worse, and i dont know know if it was the new medicine, or the cold i caught, or the stress ive been under or what. oddly enough, alot of the new patches have dissapeared, but its still bad on my leg, knees etc...but at least the new stuff all over my arms and back have cleared alot...spending some time in the sun next week should be even better...

happy new year everyone...and happy spring festival for those of you who know about that!

chris

[jcasciani]

dizzycat - did you take any of the herbal medicine while you were in HK ?

[jcasciani]

scabby -
what hospital in china did you go to ?

[sho]

It can be hard to find a good reputable doctor be they western or alternative. I had great success with TCM. I suggest that those of you who are interested go to a TCM school clinic. I went to the Internation college of traditional chinese medecine in vancouver. The good thing was that the school was intimately connected to the farms that produce the herbs.

It can be difficult to describe the herbs since a lot of them are only used in china and cannot be found readily. Also, some of the herbs are premixed into formulas.

In TCM, the body is not divided like in western medecine. The terminology is very different too. People always talk about how P is so different with each case. It may be that there are many causes of P instead of the "one". In TCM, if you have P, you are imbalanced and this imbalance has manifested as P and your other symptoms. Treatment is designed to bring harmony to an otherwise chaotic system, whatever the cause. Food and lifestyle should be addressed since these things can disrupt the body's internal balance. Another thing is that it can take up to a year for its dramatic results.