Pemphigus Vulgaris

[Guest guest]

Hi Kayte,

I treated A PV patient a number of years ago for about a year.

It's a rare disease and potentially life threatening and IMO should

be addressed from a number of different directions.Contact me

offlist if you want to discuss.

Warren

 

In , " acupuncture4health "

<acupuncture4health@r...> wrote:

> Just in case this is not familiar to most - it is an auto-immune

> disorder, which causes the body to blister the skin - often starts

> in the mouth.

>

> On the off chance - has anyone had any experience treating this?

> The prospective patient said he had heard some positive results

with

> acupuncture and chinese medicine out of Portland.

>

> I will not see the patient till Tuesday so information is limited

at

> this time, but would appreciate any input.

>

> He is 57 yo, diagnosed 4 years ago and currently on 40mg of

> Prednisone alternate days and Rx Immuran. Allergy testing was

> positive for eggs and cheese, which has helped some. Also suffers

> from chronic candida as a result of the prednisone.

>

> Thanks,

>

> Kayte

[Guest guest]

>

> In , " acupuncture4health "

> <acupuncture4health@r...> wrote:

> > Just in case this is not familiar to most - it is an auto-immune

> > disorder, which causes the body to blister the skin - often starts

> > in the mouth.

 

 

Kayte

 

I knew a homeopath in portland who developed Pemphigus. Homeopathy had failed

to

work for him so he turned to chinese herbs which allowed him to control, but not

cure, the

illness. Perhaps he was able to stop using attacking and dispersing treatments,

but I know

he was dependent on such for many years. The weeping sores of Pemphigus make

one

think of damp-heat at the onset. Look at this plate if you are not squeamish:

 

Moving blood is also probably indicated. Pemphigus is characterized by pain,

not

itching. Pain is common in AI disease and is generally considered to be blood

stasis.

Modern chinese research indicates moving blood as effective in decreasing

autoimmune

reactions in a wide range of diverse AI diseases. The idea that chronic illness

results in

stasis in the network vessels is another reason to consider this. This dictum

holds

especially true in other chronic skin problems such as psoriasis and eczema,

which

pemphigus can resemble as it proceeds. And prominent teachers like Jiao shu de

advise

that blood moving is almost always helpful in chronic illness. Herbs like zi

cao, mu dan pi,

chi shao, hong teng, yi mu cao, ze lan.

 

There is often dryness of lesions in later stages of pemphigus and this may be

due to

vacuity from heat, but also blood stasis. However any heat and/or stasis will

damage yin

blood and that may also be a factor. Heat and stasis are defining aspects of

the disease in

this case, regardless of pattern, so you can always expect at least temporary

relief from

that strategy. Your goal is to determine what causes the heat and stasis. this

is a good

example of the importance and usefulness of both bian bing and bian zheng dx.

Knowing

the defining characteristics of certain illnesses allows you to begin to offer

some relief

immediately. It should be fairly easy to determine if there has been yin, blood

or qi

damage that also needs to be rectified. However it is possible that this is

largely an

excess condition, that it begins as such as must be treated largely as such.

Not that we

ignore the progression, but do not forget the root. Yan de xin reminds us that

stasis is

often the root and I believe this has become a popular idea with regard to many

AI dz. It

is important not to treat vacuities with herbs in high doses unless they are

well defined by

s/s.

 

Because the illness has an acute eruptive phase that seems to come from nowhere,

one

cannot help but think of some sort of wen bing pattern. The sudden onset,

oozing and

life-threatening severity suggest damp-heat and toxin and herbs from those

categories

are also indicated. A number of these herbs are indicated for skin ailments and

have a

variety of effects against microorganisms and/or immune stimulation. It is

likely that this

AI dz is initiated by a virus as most seem to be. The fact that it seems to

arise acutely in

the blood level, yet goes " chronic " so quick immediately makes one think of some

sort of

lurking heat, perhaps spring-warmth, that is further stirred by either toxin

and/or

dampheat. Formulas for blood level heat and a wen bing approach deserve

consideration

as well. It does not seem to conform to a new warm disease as it begins with

interior heat

symptoms.

[Guest guest]

Hi Kayte,

I am currently treating a man in his fifties with Pemphigus Vulgaris. I have

seen him on a weekly, then every other weekly basis for three years.

(Just on the " stress issue " as an immune " confuser " let me add that this

patient is a sky diver and has already jumped out of an airplane.close to

3000 times. It is his passion) Obviously he does this mostly in the summer -

which is when his symptoms flare up.)

He responded well to acupuncture - clearing heat from LU, Skin and Blood

while supporting his Immune system.

 

He was able to get off Prednisone. He chose to space out his appointments

more (to once a month)- then found that the Pemphigus came back up - had to

have another round of treatment with Prednisone (because he knows better not

to let the Pemphigus go too far.)

Right now, at the end of his last flare-up, he is working well with 7mg of

Prednisone every other day. He stays

on each step of his diminishing dosage for a week, going down by one gram a

week.

I have spoken to him about employing the same principals of clearing toxic

heat from blood and skin while boosting his KI, LIV and LU Yin and QI

through Chinese Herbal Medicine; I hope he will consent.

Asian medicine was very alien to him, indeed.........but he is slowly coming

around.

Fact is, that the acupuncture is helping him to deal with it - even if it

can't cure it - it can keep it at bay and thereby

it improves the quality of this man's life for may years.

best wishes

Verena

 

 

 

-

" acupuncture4health " <acupuncture4health

 

Friday, September 17, 2004 7:58 PM

Pemphigus Vulgaris

 

 

> Just in case this is not familiar to most - it is an auto-immune

> disorder, which causes the body to blister the skin - often starts

> in the mouth.

>

> http://www.chronicillnet.org/online/lehne.html

>

> On the off chance - has anyone had any experience treating this?

> The prospective patient said he had heard some positive results with

> acupuncture and chinese medicine out of Portland.

>

> I will not see the patient till Tuesday so information is limited at

> this time, but would appreciate any input.

>

> He is 57 yo, diagnosed 4 years ago and currently on 40mg of

> Prednisone alternate days and Rx Immuran. Allergy testing was

> positive for eggs and cheese, which has helped some. Also suffers

> from chronic candida as a result of the prednisone.

>

> Thanks,

>

> Kayte

>

>

>

>

> Chinese Herbal Medicine offers various professional services, including

board approved continuing education classes, an annual conference and a free

discussion forum in Chinese Herbal Medicine.

>

>

>

>

[Guest guest]

Kayte,

 

You wrote:

 

> Just in case this is not familiar to most - it is an auto-immune

> disorder, which causes the body to blister the skin - often starts

> in the mouth.

 

It is definitely familiar to me -- I have it for 25 years, and created

Pemphigus FAQ site in mid-nineties (www.geocities.com/victorlei).

I don't maintain it any more as better information sources are available

now, especially www.pemphigus.org.

 

> On the off chance - has anyone had any experience treating this?

 

Yes, from the patient side, so my perspective is somewhat different from

what you are looking for.

 

> The prospective patient said he had heard some positive results with

> acupuncture and chinese medicine out of Portland.

 

Well, there is some anecdotical evidence published. When you search

the archives do not confuse pemphigus vulgaris with other -- less severe --

blistering diseases that are also called pemphigus (not vulgaris).

 

As far as I am aware, there is NO alternative treatment to pemphigus

vulgaris that is reported to work for more than one patient.

(I do my best to be very careful with the wording here).

 

As of singular cases -- there is a variety, including a published report

of somebody who was cured by eating apples. In private communication

one south american lady told me that she was cured by drinking a

" cleansing tea " -- unfortunately she did not know what that tea contains.

 

When evaluating the positive reports, it is especially important to

ask hard questions. Example 1: " Did you take prednisone when you received

the alternative treatment that cured you? Other immunosuppressants? What

dosages? Etc. " . Example 2: " Does this alternative treatment fall into

an MLM scheme? Are you, your spose or your close friends are a part of that

MLM network? " .

 

Personally, no alternative treatment ever helped me with pemphigus vulgaris.

In particular, about 15 years ago I tried a TCM herbal treatment that

made me VERY sick. It is unfortunate that I have no way to recover now what

herbs were in that recipe. My understanding is that these herbs worked very

much like prednisone -- by suppressing the immune system, with more or

less the same side effects, but without the ability to fine-tune the dosage.

 

> I will not see the patient till Tuesday so information is limited at

> this time, but would appreciate any input.

 

First and foremost, you should be aware that the disease is FATAL if

untreated or mis-treated. In fact, it is sometimes fatal even if treated,

as some patients do not respond to prednisone and immunosuppressants (imuran,

cellsept, etc). Pemphigus vulgaris definitely falls into " Don't try it at home "

category.

 

> He is 57 yo, diagnosed 4 years ago and currently on 40mg of

> Prednisone alternate days and Rx Immuran.

 

One piece of important information is missing here. Pemphigus usually

appears as flares (high activity periods), mixed with (sometimes very long --

10 years in my case) remissions. 40 mg alternate days of prednisone is

usually too little to handle a flare, and too much for a remission period.

 

So the important question is at what stage of the disease is your patient.

 

> Allergy testing was positive for eggs and cheese, which has helped some.

 

What helped whom?

 

> Thanks,

>

> Kayte

 

I believe that any treatment of your patient must be coordinated with

his MDs. I hope they are open enough to this kind of cooperation.

 

Good luck,

Victor

--

 

Calligraphy of geese / against the sky / The moon seals it (Buson/Hass)

[Guest guest]

Has anyone run across homeopathic or herbal treatments for Pemphigus

Vulgaris? Someone I know suffers from this autoimmune, skin disease.

She has been prescribed mostly prednisone for it - but steroids can

have such horrible side effects.

 

cj

[Guest guest]

She should look at her diet first and foremost.  She might try doing a cleanse

for a week or so then eat mainly raw foods and stay away from anything

processed.  I had this disorder and I know it isn't fun.

 

Marji Page, Certified Herbalist

www.CoyoteMoonHerbs.com

 

------------

" Blsbee " <blsbee

 

Sat, 28 Oct 2006 16:25:33 -0000

Pemphigus Vulgaris

 

> Has anyone run across homeopathic or herbal treatments for Pemphigus

> Vulgaris? Someone I know suffers from this autoimmune, skin disease.

> She has been prescribed mostly prednisone for it - but steroids can

> have such horrible side effects.

>

> cj

>

>

------- End of Original Message -------

 

 

 

 

[Guest guest]

Thanks for your response, Marji - is yours completely under control

now? She is a vegetarian but am not sure if she has a completely

raw diet. Are their homeopathics and herbs that are especially

helpful for this disorder?

 

cj

 

, " marji " <CoyoteMoon

wrote:

>

> She should look at her diet first and foremost.  She might try

doing a cleanse for a week or so then eat mainly raw foods and stay

away from anything processed.  I had this disorder and I know it

isn't fun.

>

> Marji Page, Certified Herbalist

> www.CoyoteMoonHerbs.com

>

> ------------

> " Blsbee " <blsbee

>

> Sat, 28 Oct 2006 16:25:33 -0000

> Pemphigus Vulgaris

>

> > Has anyone run across homeopathic or herbal treatments for

Pemphigus

> > Vulgaris? Someone I know suffers from this autoimmune, skin

disease.

> > She has been prescribed mostly prednisone for it - but steroids

can

> > have such horrible side effects.

> >

> > cj

> >

> >

> ------- End of Original Message -------

>

>

>

>

[Davika 0]

 

Hi Kayte,

I treated A PV patient a number of years ago for about a year.

It's a rare disease and potentially life threatening and IMO should

be addressed from a number of different directions.Contact me

offlist if you want to discuss.

Warren

 

In , " acupuncture4health "

<acupuncture4health@r...> wrote:

> Just in case this is not familiar to most - it is an auto-immune

> disorder, which causes the body to blister the skin - often starts

> in the mouth.

>

>

> On the off chance - has anyone had any experience treating this?

> The prospective patient said he had heard some positive results

with

> acupuncture and chinese medicine out of Portland.

>

> I will not see the patient till Tuesday so information is limited

at

> this time, but would appreciate any input.

>

> He is 57 yo, diagnosed 4 years ago and currently on 40mg of

> Prednisone alternate days and Rx Immuran. Allergy testing was

> positive for eggs and cheese, which has helped some. Also suffers

> from chronic candida as a result of the prednisone.

>

> Thanks,

>

> Kayte

I

 

 

Hello,

 

 

I am not sure if anyone is monitoring this board but I need some help in trying to understand this disease. My mother has pemphigus vulgarisms disease. Please reply and I will post more information. Thanks a bunch.