Re: Discouraged - with SLE -njteabag & Jan

[Guest guest]

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.

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[Guest guest]

Jan, Dr Mirkin discouraged me also saying if it Sjogrens then there no hope

and said hopefully it something else...but nothing else matches so closely. Dont

let him discourage you, I have been discouraged by so many docs but trying to

keep the hope alive. Its so hard but we have to. The doc I see next week out of

state had 2 patients with SLE improve with infrared alone but hasnt yet worked

for me. Maybe it can for you tho.

njteabag, what exactly do they infuse you with? Did anitbiotcs not wokr for

you? how long did you try them? What side effects have you had with the IVIG?

Can you please tell me how your Primary SS is after the tx you have had? My SS

is not improving no matter what I do.

I have heard of tons of people with RA getting better on abx but not one with

Lupus so not sure how the reverse statment came about on here.

njteabag@... wrote:

If you can't take the AP have you looked into IVIG treatments? They

might

work and don't have the toxic side effects of the others. There are some side

effects, but I have been getting them for 12 years with no ill effects.

IVIG is given by infusion and floods your body with antigens that are not

programmed against your body. They are friendly antigens that lock with your

antibodies. The more friendly ones you have, the less room there is for the

enemy ones to lock into your antibodies.

It has helped me a lot. I have polymyositsis and primary sjogrens which are

a little different than SLE, but my rheumy uses it for both.

**************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)

[Guest guest]

Hi, Jan. Just curious - but did you actually meet with Dr. Mirkin

himself? Or one of his associates.

Also, did he run any tests? Just wondering.

Amy

Vicki wrote:

>

>

> Jan, Dr Mirkin discouraged me also saying if it Sjogrens then there no

> hope and said hopefully it something else...but nothing else matches

> so closely. Dont let him discourage you, I have been discouraged by so

> many docs but trying to keep the hope alive. Its so hard but we have

> to. The doc I see next week out of state had 2 patients with SLE

> improve with infrared alone but hasnt yet worked for me. Maybe it can

> for you tho.

>

> njteabag, what exactly do they infuse you with? Did anitbiotcs not

> wokr for you? how long did you try them? What side effects

>

[Guest guest]

Hi Amy -

Yes, I met with Dr. Mirkin after meeting with Dr. first. My time with

Dr. Mirkin was very short. My main appointment was with Dr. , but we

had it scheduled so that Dr. Mirkin would come in at the end. Dr. Mirkin

ordered some labs after meeting with me, and I will meet with him another time

or

two.

Jan

[Guest guest]

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.