RE: Discouraged - with SLE -njteabag & Cooky

[Guest guest]

Thanks Cooky for clarifying regarding the Lupus patients. My moms friend with

Lupus is in such bad shape, I mentioned ABX before but since at the time I didnt

have one patient to point out as having improved I couldnt get her to start.

This helps a lot. Also thanks for asking about SS help on my behalf, you are so

sweet.

I had found one doc a while back that does IVIG and at the time dindt know

much about it but for whatever reason he decided it wont work and didnt ever

contact me after that to make an appt and I tried so hard. I have to find

someone else somehow. Not sure how to go about it at all. Can you help with that

too njteabag?

Just typing & reading is so hard when your vision is blurry, I usually stay

off the boards for that reason.

C Stonkey <cookee1@...> wrote: I asked this for Vicki. She is

having such a bad time with her SS and I just

feel so bad for her. I hope she reads this.

Cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of njteabag@...

Sent: Thursday, February 21, 2008 12:28 AM

rheumatic

Subject: Re: rheumatic Discouraged - with SLE -njteabag & Jan

I just responded to Cookee. The IVIG has helped the primary SS quite a lot.

The side effects can be controlled by infusing very slowly. At most, I get

some headaches.

[Guest guest]

Sorry I don't have any idea how to find a doc like that. Ethel may be able

to help??.or njteabag??

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Vicki

Sent: Thursday, February 21, 2008 12:32 PM

rheumatic

Subject: RE: rheumatic Discouraged - with SLE -njteabag & Cooky

Thanks Cooky for clarifying regarding the Lupus patients. My moms friend

with Lupus is in such bad shape, I mentioned ABX before but since at the

time I didnt have one patient to point out as having improved I couldnt get

her to start. This helps a lot. Also thanks for asking about SS help on my

behalf, you are so sweet.

I had found one doc a while back that does IVIG and at the time dindt know

much about it but for whatever reason he decided it wont work and didnt ever

contact me after that to make an appt and I tried so hard. I have to find

someone else somehow. Not sure how to go about it at all. Can you help with

that too njteabag?

Just typing & reading is so hard when your vision is blurry, I usually stay

off the boards for that reason.

[Guest guest]

Just a note. My first diagnosis was Lupus since I had a positive ANA and a

butterfly rash across my nose and cheeks. Actually, that came after the

Idiopathic Thrombocytopenia. Then followed R.A. with Lupus tendencies. And,

finally, Lyme. Well, breast cancer in between, colon rupture, etc. Oh, and

Sjogrens. Regardless, antibiotics have helped me tremendously, I'm not sure

why they do, but I'm thankful. Just wanted you to know that my first rheumatic

duagnosis was Lupus, and antibiotics have seemed to help all my blood counts

and my symptoms.

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)