To those considering the Chinese Medicine thing

Prior to the NPF conference in Anaheim, I happened to try a Chinese Medicine 
Clinic, here in Southern California.  Just thought I'd share my personal 
experience(s) for those who are interested.  The rest of you can delete me 
quicker than I can....(see they're already gone :-)   )

1.  The clinic I went to is affiliated with a school for people studying 
Chinese Medicine, so (disclaimer) perhaps they do things a bit differently 
than those in private practices.

2.  They took a VERY thorough medical history and did a physical exam 
(including the tonge-looking thing).  Have you ever had 3 people carefully 
studying your tongue.  It's a unique experience.

3.  They did nothing more invasive than acupuncture that I told them was OK 
to do at the end of our session.  I had had acupuncture before, believe it or 
not, from my pain management M.D., that is also a licensed acupuncturist.  
Some things I've tried acupuncture for have worked for me in the past (such 
as fatigue, nausea associated with chemo / immunosuppresive drugs, etc.).  
Other things have not worked (the blistering itself -- for me anyway, etc.).

4.  At the end of my session, the licensed, credentialed Doctor of Oriental / 
Chinese Medicine (not sure his exact title) looked up pemphigus in a book, 
written BTW, completely in Chinese.  He told me, "This is a very serious 
disease.  I think we can really help with side effects related to the 
steroids and chemo that you have to take.  I'm not certain that we can 
actually, completely stop the disease process itself.  It's important that 
you continue to see your "regular" (M.D.) doctor, even if you decide to take 
this route, and take the medications as he/she directed."  They NEVER told me 
that they could "cure" the disease, or even knock it into remission, and 
certainly advocated slow adjustments made with my M.D.s blessing, if there 
was any adjustments at all.  They pretty much said they'd augment Western 
treatment as it was needed.

5.  At the end of the session, I walked away with some Chinese herbs (don't 
know what they were, they WERE labeled in English, but it was things I hadn't 
heard of), had an acupuncture session, and was given general advice on how to 
lower the "heat" in my body, etc.  I followed most of the advice:  I noticed 
that I felt a little better.  It didn't cure me.  It certainly didn't hurt to 
check out though.  And, ready for this?  Because it was w/the school, it cost 
me a whopping $30 for a month's worth of herbs and to have the office visit 
AND acupuncture session.  Comparison:  It cost me $90 to just have 
electro-acupuncture from my M.D.

Here's Misti's summary / opinion:  Maybe the cynics (and you know I usually 
fall into your camp!) can say it was the Placebo Effect, but I think they can 
help people who are open to this type of trreatment (and understanding the 
*philosophy* behind the treatments is very important as well).  I do believe 
that the herbal remedies, acupuncture and the like are beneficial and helpful 
for some of our side effects, especially those of prednisone.  I personally 
do not think my disease (which they've told me is moderate to severe, 
depending on the day I suppose) will be cured solely by Chinese Medicine, but 
overall I had a positive experience, and I *personally* don't believe that 
it's dangerous... especially if you are a well-informed healthcare consumer 
as we all should be (as humans, NOT pemphigus patients only).  As some of you 
know, I've been doing the pemphigoid thing for 12 years now, and I certainly 
pause before jumping back into standard treatment -- it seems to get harder 
with time, not easier, for my body to take large doses of immunosuppresive 
drugs and steroids.  However, I've learned to monitor what's going on in my 
body and I DO go for treatment if I feel it's getting dangerous, out of hand, 
or I notice that the sites are not healing as they should.

Hope this little summary helps anyone out there who may have been curious but 
a bit apprehensive, etc.  I thought the speaker at the conference was good, 
but it was toward the end of the day, her accent made her a bit hard to 
follow, and I only followed as well as I did because I'd already had this 
experience.

Sincerely,
Misti