RE: Discouraged - with SLE

[Guest guest]

My DX was systemic sclero, SLE and polimyositis. I was under the

understanding you take doxy for SLE instead of mino. I have been on the ABX

for 10 yrs

and the only trouble I have is with the scleroderma. The lupus no longer

bothers me. I find it hard to believe that the ABX doe not work for lupus.

From my own experience. Don't give up. Judy

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

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[Guest guest]

Thank you Judy. I can't tell you how encouraging your email was! How long

did it take on the Doxy before your lupus was in remission or at least

substantially improved?

Good health to you -

Jan

[Guest guest]

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.

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[Guest guest]

Re: rheumatic Discouraged - with SLE

> Thank you Judy. I can't tell you how encouraging your email was! How

> long

> did it take on the Doxy before your lupus was in remission or at least

> substantially improved?

> Good health to you -

> Jan

Jan, Judy was close to death when she started treatment. She flew into town

and stopped by my house before her doctor appointment. I was appalled when

I saw I bad she was, and wondered how she ever made it that far. In fact,

the doctor took one look at her and felt she needed to send her right back

home - forget wasting money treating! But Judy felt God had led her to this

doctor and insisted on treatment which was extremely aggressive. Judy was

willing to immediately change her lifestyle - juicing, detoxing, etc. in

addition to the many IVs, etc. and her life was saved. That was 10 years

ago. Judy and her husband had dinner with us maybe 3 years ago and she

looked terrific - full of energy. She understands completely the need for

following a strict protocol for the rest of her life.

Ethel

>

[Guest guest]

I'm sorry that the doc said that. I was under the impression that Lupus was

easier to treat with antibiotics than RA. I thought Lupus was treated with

erythromycin. Look it up on the rheumatic site and I am sure you will see

what I just told you.

Ethel? Is this not right?

Cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Janiceesher@...

Sent: Wednesday, February 20, 2008 2:16 AM

rheumatic

Subject: rheumatic Discouraged - with SLE

Hi Everybody -

I visited Dr. Mirkin today, after months of waiting for my first

appointment,

and he told me that, if indeed I have SLE, the AP therapy will NOT work and

I

must stick with the Plaquenil (or similar drug)/Prednisone combo - which I

really don't like at all and have reacted negatively to. He is also testing

for

Lyme and he is hoping that is what I have instead of SLE because then he can

treat it with AP therapy.

I am SO discouraged. I was so encouraged to be starting AP therapy. Two top

rheumatologists have told me I have SLE and I just had a horrible flare in

the

fall (my first since Summer '06 diagnosis). Still on 10 mg Prednisone,

though I went off the Plaquenil because I couldn't stand it. No pain now and

getting the Prednisone down 1 mg a week, but need long-term help.

Is there any encouragement out there?

Jan

[Guest guest]

Wow, THANK YOU for this email, Ethel. And Judy, thanks again for the

encouragement your story is to me.

I am saving this for continued encouragement.

Can you send me the dr's name to my personal email?

THANK YOU so much again.

Jan

[Guest guest]

THANKS, Ethel. I have also saved what you sent from rheumatic.org. VERY

helpful.

Jan

[Guest guest]

rheumatic Discouraged - with SLE

>

>

>

> Hi Everybody -

>

> I visited Dr. Mirkin today, after months of waiting for my first

> appointment,

> and he told me that, if indeed I have SLE, the AP therapy will NOT work

> and

> I

> must stick with the Plaquenil (or similar drug)/Prednisone combo - which I

> really don't like at all and have reacted negatively to. He is also

> testing

> for

> Lyme and he is hoping that is what I have instead of SLE because then he

> can

>

> treat it with AP therapy.

>

> I am SO discouraged. I was so encouraged to be starting AP therapy. Two

> top

> rheumatologists have told me I have SLE and I just had a horrible flare in

> the

> fall (my first since Summer '06 diagnosis). Still on 10 mg Prednisone,

> though I went off the Plaquenil because I couldn't stand it. No pain now

> and

>

> getting the Prednisone down 1 mg a week, but need long-term help.

>

> Is there any encouragement out there?

> Jan

>

>

[Guest guest]

Thanks Ethel. I know the intestinal functioning is a major part of all of

our diseases. I'm glad you stress this.

I sent a FFN to the doc I go to and she started on Minocin and was improving

greatly. Then he did a test for Lupus (just because non of her docs tested

her for this) and it was positive. He immediately took her off Minocin

because he was under the same impression as I .Lupus can only be treated

with emycin. Long story short.she went down hill rapidly and even tried to

go back on Minocin without getting better. She could not understand and

decided to do the " bad " meds and she is OK but she cannot see that she is

just coating the real problem.

Note to everyone: a bird in the hand etc.

cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Ethel Snooks

Sent: Wednesday, February 20, 2008 5:10 PM

rheumatic

Subject: Re: rheumatic Discouraged - with SLE

rheumatic Discouraged - with SLE

>

>

>

> Hi Everybody -

>

> I visited Dr. Mirkin today, after months of waiting for my first

> appointment,

> and he told me that, if indeed I have SLE, the AP therapy will NOT work

> and

> I

> must stick with the Plaquenil (or similar drug)/Prednisone combo - which I

> really don't like at all and have reacted negatively to. He is also

> testing

> for

> Lyme and he is hoping that is what I have instead of SLE because then he

> can

>

> treat it with AP therapy.

>

> I am SO discouraged. I was so encouraged to be starting AP therapy. Two

> top

> rheumatologists have told me I have SLE and I just had a horrible flare in

> the

> fall (my first since Summer '06 diagnosis). Still on 10 mg Prednisone,

> though I went off the Plaquenil because I couldn't stand it. No pain now

> and

>

> getting the Prednisone down 1 mg a week, but need long-term help.

>

> Is there any encouragement out there?

> Jan

>

>

[Guest guest]

The IVIG has helped a lot. Probably more with the polymyositsis, but some

with the Sjogrens too.

I had such dry eyes, I would get corneal abrasions just during REM sleep. My

eyes are much better.

**************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,

I was wondering what kind of positive effects you have had concerning the

sjogrens???

Cooky

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.

[Guest guest]

Where would I begin in looking into IVIG treatments? Is there a dr. referral

source?

Jan