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Re: Digest Number 1776

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I think bone marrow treatment has been overtaken by autologous stem cell

transplantation. Below is a copy of a note I circulated last year. Ann's

doctors have always said these are high risk strategies ( ie with a 25%plus

risk of being killed by the transplant process ) and therefore a last

resort. The key issue is whether these techniques when used in other more

common autoimmune diseases are getting better with experience.

" In my recent occasional foray onto PUB MED I noticed an article from a

German team ( Rosen. O and others ) which claims to have used autologous

stem cell transplantation successfully for rp and lupus. ( this is where

you wipe out the immune system and then regrow it from stem cells extracted

earlier and it then behaves itself ) I know it is a highly risky treatment

and the new rheumy confirmed this. But he also said he thought that a Prof.

in a Leeds hospital had had a lot of success with rheumatoid arthritis

cases which had not responded to other treatments. I shall try to find out

more . I don't think it will help the majority of the group but I think

anyone who gets really ill and nothing is working should raise it with

their consultant. "

Ann is generally feeling better. She is gradually upping the methotrexate

without severe side effects. RP remains active but at a tolerable level (

less coughing, less severe flares ) and she has dropped the pred to 12.5.

We just hope the existing damage to the trachea is not getting worse

without our knowledge

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, so good to hear from you and updating us on Ann. Sounds like the metho

is working. Great that she is able to lower that pred. Please give her my

best and tell her hello for me. You know....you really should post

more...LOL thought we lost you out there.

Hope you and Ann are having a good weekend.

C

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  • 1 year later...

In a message dated 11/25/2002 11:16:42 AM Eastern Standard Time,

PATISINKY@... writes:

> What I do not know is after weight loss surgery, how much protein is

> actually

> malabsorbed by food. I have read over the last year many posts from people

>

> who have perfect labs without protein shakes and also from those who had

> bad

> labs without the protein shakes. I was trying to gather my own data to try

>

> to figure out if it was just the distals who lacked protein malabsorption

> but

> what I found out was there was no rhyme or reason to proximals, medials or

> distals in individual protein lab results with or without protein shakes.

> And I think this is due to the fact that everybody's diet is different.

**************************And everbody's body is different.

>>I ask my doctor and he said he has done over 1500 medials over the last 15

years and never recommended shakes and still claims we don't need them<<

***************************We've discussed this before many times...doctors

may take 1 nutrition course in Med school, most still think protein shakes

are for weight-gaining body builders and don't even know there are shakes out

there that are virtually SF, FF and carb-free, so take what docs say about

protein shakes with several grains of salt, unless you know they're very

up-to-date on today's products. Also, doctors do not want us to live off

protein shakes rather than food, and in that respect, I think they're right.

The very nature of the word " supplement, " whether it refers to protein or

vitamins is that they are designed to supplement real food and are not

designed to be taken alone for any length of time, certainly not without

constant medical monitoring.

>> Since I don't have any proof one way or the other, I figured I would drink

2 shakes

a day. <<

***********************Me, too. I drink 2 when I think of it, but usually

only have my 1 for breakfast. Why? BECAUSE I LIKE IT! And, because it

certainly can't hurt, and probably does help.

>>But, I really do enjoy the information Ray provides. I think we should all

be able to express our knowledge and opinions because it helps us to learn. <<

*************************So do I. Again, this had been posted before, we

should all just put a little disclaimer after each one of our opinions or

experiences, such as " Just my .02, YMMV, JMHO, yadda, yadda, yadda.

JMNSHO :),

in NJ

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  • 1 year later...

I did mean MEDI-CAL..

I looked on obeistyhelp.com and I did

find a Doc for her. Turned out to be one in Fresno where she lives.

So I called her and she was so happy. She will call first thing in

the morning.

Thanks

Lap RNY Proximal

8-20-03

258/175/130???

Dr. Roger Fast

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I did mean MEDI-CAL..

I looked on obeistyhelp.com and I did

find a Doc for her. Turned out to be one in Fresno where she lives.

So I called her and she was so happy. She will call first thing in

the morning.

Thanks

Lap RNY Proximal

8-20-03

258/175/130???

Dr. Roger Fast

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