New member interseted in Tibetan treatments

[Guest guest]

Has anybody had experiences with Tibetan medicine in treating PSC?

My husband signed us up for this support group, because we recently had

it

confirmed that my 13 year old son (his stepson) has early stages of PSC. PSC was

diagnosed after he had a bad case of ulcerative colitis starting last spring,

that took the

mayor part of the year to get completely under control. He just completed a

three infusion

Remicade series, and he is now as per blood work in remission. He now still is

on 6-MP

(Immunosuppressant), Asacol, and Ursodial.

In November we saw a renowned Tibetan doctor in Berkeley, Dr. Dondon (former

doctor of

the Dali Lama residing in India), who after looking my son over, felt that with

his herbs my

son could turn this illness around. Just by examining my son he figured out his

early

childhood history with chronic headaches, which went away by age 9. He

attributed this to

some sort of food poisoning at the time, which the liver could not deal with and

showed

up as chronic headaches initially. I felt that we were dealing with a true

healer here, and of

course I liked the sounds of his confidence. I've had the opposite impression

dealing with

GI's and the Liver surgeon.

When I talked to the GI about our intention with Tibetan medicine, he made it

clear that my

son could not be on the 6-MP while trying the herbal remedies, because of

possible

interactions. My fear is that my son could be prone to a uc flare without the

6-MP, but still

I am leaning towards trying the herbal treatment, because I feel he has more to

loose by

not trying it.

I would appreciate any input if anybody has had experiences with Tibetan

medicine and

PSC.

Also, has anybody had experienced with a herbal supplement called Liv-52 and can

that

be taken with 6-MP?

Thanks,

and

[Guest guest]

-----Original

Message-----

Has anybody had experiences with Tibetan medicine in treating PSC?

I did a quick internet search and

came up with the following – (He spells his name Donden)

“The image of the

tree of medicine, with manifold trunks, branches, and leaves, provides the

conceptual skeleton for Tibetan medicine. Other major

concepts are that the body contains three humors and five elements that affect

its problems and their treatments, and that the three primary causes of disease

are attachment, hatred, and delusion. The four

immeasurables (i.e., the good guys) in the Tibetan system are loving kindness,

compassion, empathic joy, and equanimity.”

“Dr. Donden describes

the human body as being composed of the three rather poetic properties of wind,

bile and phlegm. Illness is described as being related

to an imbalance of these three fundamentally active principles. A medical diagnosis as being performed through

a general questioning of the patient, a special analysis of the patient's

pulse, and finally by a process of urinalysis. The treatment

of illness through a modification of both behavior and diet.”

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

Thanks Barb, those are great quotes.

As newbies on this site we would appreciate any kind of guidance you can give

us.

and

[Guest guest]

> I would appreciate any input if anybody has had experiences with

Tibetan medicine and PSC. Also, has anybody had experienced with a

herbal supplement called Liv-52 and can that be taken with 6-MP?

Hi and ;

I'm so sorry to hear of your son's PSC/UC diagnosis. I'm totally

ignorant about Tibetan medicine and I admit that I don't have any

clues about what herbal remedies this may specifically involve.

However, I have heard about Liv-52, and I would urge caution in using

this supplement based on a statement in this abstract ... " LIV.52 has

been withdrawn from the market because of deleterious effects in

patients with liver disease. " :

Clin Gastroenterol Hepatol. 2004 Nov;2(11):947-56.

Use of herbal supplements for chronic liver disease.

Levy C, Seeff LD, Lindor KD

Division of Gastroenterology and Hepatology, Mayo Clinic Rochester,

Minnesota 55905, USA.

BACKGROUND & AIMS: Complementary and alternative medicine (CAM) is

becoming popular among patients with liver disease. Although there is

a growing body of evidence regarding potential mechanisms of action

of these and other herbs, caution must be used to interpret the

results of the few clinical trials available. Our goal was to discuss

the biologic rationale for the use of specific herbs (silymarin,

glycyrrhizin, sho-saiko-to, Phyllanthus amarus , Picrorrhiza kurroa ,

Compound 861, CH-100, and LIV.52) in the treatment of chronic liver

diseases, as well as the evidence for their efficacy and adverse

effects according to clinical trials. METHODS: Because of the

relative paucity of clinical studies using herbs, every trial

published in English was reviewed. RESULTS: Although many trials

suggest that these herbs can decrease serum transaminase levels, the

effects on hepatic histopathology and long-term survival are either

poorly studied or conflicting. LIV.52 has been withdrawn from the

market because of deleterious effects in patients with liver disease.

CONCLUSIONS: Based on current evidence, we cannot recommend the use

of herbal supplements for the routine treatment of any chronic liver

disease and further well-designed clinical trials are necessary.

PMID: 15551246.

It's possible that the statement in the above article may be related

to the outcome of the Liv-52 trial mentioned in this article:

J. Hepatol. 2005 Nov;43(5):901-10. Herbal hepatotoxicity. Stickel F,

Patsenker E, Schuppan D. PMID: 16171893.

" Ayurvedic herbal preparations from India have been studied for the

treatment of chronic liver diseases either experimentally or

clinically, including a herbal combination termed Liv.52. Liv.52

contains Capparis spinosa (capers), Cichorium intibus (wild chicory),

Terminalia arjuna (arjuna), Solanum nigrum (black nightshade),

Achillea millefolium (yarrow), and others. Liv.52 was reported to

protect against experimental toxic liver damage [87], and suggested

to be useful for human alcohol-related liver cirrhosis by lowering

acetaldehyde, the highly toxic first metabolite of alcohol

degradation [88]. This initiated a 2-year European randomized

controlled clinical trial in 188 patients with alcoholic liver

cirrhosis [89]. While no effect of Liv.52 on survival was noticed in

cirrhotics with Child class A and B, increased liver-related

mortality among those with child class C was found leading to

premature termination of the study. This emphasizes the potential

hazards of poorly defined and incompletely tested herbal medications. "

Sorry, but I have not been able to find anything specifically on Liv-

52 in PSC, and whether there is interaction with 6-MP.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Thank you for your reply, we appriciate your quick response.

If I understand correctly, your son was diagnosed with PSC and UC in 03. How is

he doing? Is

he leading a normal life?

Best,

and

[Guest guest]

Hi , My dad who has PSC takes many herbs recommended by a chinese doctor in our area. My dad's test results still show a progression on a yearly basis, but he is doing so well considering he has had the disease for a least 12 years. He is 59 years old. He has some symtoms of the disease but not even close to the symtoms explained by the people in the PSC group! I do know for sure it is due to prayer but also feel taking herbs coupled with prayer is why he is still living a close to normal life. Would you provide me with the contact info for this tibetan doctor? I would be very intertested in viewing his website and looking him up on the web. My dad is very serious about organic food and herbs and has good knowledge about it. He is a part time organic farmer. Thanks!! and

wrote: Has anybody had experiences with Tibetan medicine in treating PSC?My husband signed us up for this support group, because we recently had it confirmed that my 13 year old son (his stepson) has early stages of PSC. PSC was diagnosed after he had a bad case of ulcerative colitis starting last spring, that took the mayor part of the year to get completely under control. He just completed a three infusion Remicade series, and he is now as per blood work in remission. He now still is

on 6-MP (Immunosuppressant), Asacol, and Ursodial. In November we saw a renowned Tibetan doctor in Berkeley, Dr. Dondon (former doctor of the Dali Lama residing in India), who after looking my son over, felt that with his herbs my son could turn this illness around. Just by examining my son he figured out his early childhood history with chronic headaches, which went away by age 9. He attributed this to some sort of food poisoning at the time, which the liver could not deal with and showed up as chronic headaches initially. I felt that we were dealing with a true healer here, and of course I liked the sounds of his confidence. I've had the opposite impression dealing with GI's and the Liver surgeon. When I talked to the GI about our intention with Tibetan medicine, he made it clear that my son could not be on the 6-MP while trying the herbal remedies, because of possible interactions. My fear is that my son could be

prone to a uc flare without the 6-MP, but still I am leaning towards trying the herbal treatment, because I feel he has more to loose by not trying it.I would appreciate any input if anybody has had experiences with Tibetan medicine and PSC.Also, has anybody had experienced with a herbal supplement called Liv-52 and can that be taken with 6-MP?Thanks, and Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!" First Weber Group Cell: 1507 E. Sunset Drive Waukesha, WI 53189 LoriUSA@... www.BuyandSellRealProperty.com

[Guest guest]

Dear Lori,

It's encouraging to learn that your father is doing so well with Tibetan herbs.

I think

especially as an adult, healing the body has to be a body, mind, spirit

approach.

I have heard a similar story to your dad's from a person who has had a

transplant a few

years ago. She had been on Tibetan herbs for the years prior to her operation

(on Dr.

Yeshe Dhonden's herbs). She said that when she finally had the transplantation,

the

doctors were puzzled by the contrast between her overall very good health,

considering

the declined state of her liver.

Neither Tibetan doctors we saw have a web site, but if you google them you'll

find lots of

info.

Dr. Yeshe Dhonden has his practice in India. He must be in his seventies. He has

written

two books, which you should be able to get. He travels to the east and west

coast of the

US once per year, We saw him in Berkeley in December of last year. He has a

western

doctor that helps coordinate his appointments (it is extremely difficult to get

an

appointment with him). I could email you this info privately, since she is

already

overextended (hasn't answered my last email).

The other doctor we saw on a regular basis for several months is Dr.

Dickey, also

first generation Tibetan. She leads a busy practice alternating weeks between

the Bay Area

and LA. I could email you her number as well.

Best,

and

[Guest guest]

> If I understand correctly, your son was diagnosed with PSC and UC in

03. How is he doing? Is he leading a normal life?

Hi and ;

Our son was diagnosed with PSC at age 18 as a result of seeing elevated

LFTs in routine blood tests. Once PSC was confirmed (with liver biopsy

and ERCP) they then did a colonoscopy and found he had UC, even though

he had no symptoms of this. He was given ursodiol and asacol initially.

The ursodiol was eventually increased to a " high dose " . Then rifampin

was added to control itching. In addition he takes vitamin supplements,

extra folate, and fish oils. He tries to eat sensibly with a well

balanced diet, and abstains from alcohol. He works out by weight

lifting to try to keep fit. He went off to college a few months after

PSC/UC diagnosis and really has had no major health problems, thank

God. He's the designated driver when going to night clubs and parties,

and has taken up dancing instead of drinking. I think that's pretty

hard for young men to do these days! He has fatigue, but how much of

this is " normal " student fatigue (e.g. staying up late working on

papers etc) is hard to tell. He's now applying for medical school and

has been interviewing at several medical schools over the last few

months. He'll be graduating in May.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

, yes please email me at my personal email address the info. LORIJOHNSONUSA@... I go to India often and would like to look him up when I am there in November if possible. Thanks!! and wrote: Dear Lori,It's encouraging to learn that your father is doing so well with Tibetan herbs. I think especially as an adult, healing the body has to be a body, mind, spirit approach. I have heard

a similar story to your dad's from a person who has had a transplant a few years ago. She had been on Tibetan herbs for the years prior to her operation (on Dr. Yeshe Dhonden's herbs). She said that when she finally had the transplantation, the doctors were puzzled by the contrast between her overall very good health, considering the declined state of her liver. Neither Tibetan doctors we saw have a web site, but if you google them you'll find lots of info.Dr. Yeshe Dhonden has his practice in India. He must be in his seventies. He has written two books, which you should be able to get. He travels to the east and west coast of the US once per year, We saw him in Berkeley in December of last year. He has a western doctor that helps coordinate his appointments (it is extremely difficult to get an appointment with him). I could email you this info privately, since she is already overextended (hasn't answered my last

email).The other doctor we saw on a regular basis for several months is Dr. Dickey, also first generation Tibetan. She leads a busy practice alternating weeks between the Bay Area and LA. I could email you her number as well.Best, and Lori A. "Aggressively Pursuing Solutions To Your Real Estate Needs!" First Weber Group Cell: 1507 E. Sunset Drive Waukesha, WI 53189 LoriUSA@... www.BuyandSellRealProperty.com