I had my Dr app. yesterday with the Nueroligist that finally is getting to all my problems. My severe back pain is coming from 3 buldging disks. Pt has been ordered. I have been referred to a Rheummy Dr but cant get in till the end of OCT. She said I was +Lupus,+ RPR, + ANA. At this point I am getting a little scared. I was going to ask for copys of my blood work 22 tubes in all,but felt they might confuse me more. She says I most deffenitly have SLE Lupus. I see my GP today to get my chest conjestion medicated again, I took antibiotics 2 weeks ago but they didnt clear it up. I really am keeping my fingers crossed that I like this new Dr. He is the only one around for 100 miles. My lifestyle is changing very slowly, I very much need to save all my energy for my job, but most importantly my 15 yr old son who is very involved in school. He is my LIFE. Some great reading was posted by some of you, if you could please post again I would like to get those books. Thanks bunches.

Dear NCWHS, Reading ideas---

(1) all the "sticky posts" at the front of the Board
(2) hardcovers from your library or bookstore: one is by Dr. Daniel Wallace, one is by Dr. Robert Lahita. Both are comprehensive!
(3) recent thread by Blessed4Life, with very interesting concepts on ANA=negative lupus (it actually talks about ANA, etc. PITFALLS, too.)

What's "RPR", that you cited as positive? Do you know which tests, other than it & ANA, came back positive? i.e., you could get a copy of your test results & try to understand more about the results as you read, post again, go to your rheumie in October, etc.?

Anyway, best wishes & good luck! from Vee

HIya Veej,

Sorry to jump in on this but I was interested in RPR too. I have found it, it is rapid plasma reagin and the information given is "Certain blood tests for syphilis may be falsely positive in lupus patients. Chronically false-positive VDRL or rapid plasma reagin (RPR) tests may occur in patients with lupus. Cardiolipin, a phospholipid, is a component of the antigenic mixture used in these assays".

So it is determined as the false positive test that a lot of lupus patients have for syphilis.

Dear NCWHS,

I know the positive result of this test sounds horrid, it is in fact a false-positive - but it doesn't mean anything nasty has happened to you.

Take care everyone.

goldenwings :angel:

Dear NCWHS & goldenwings, Very interesting on the RPR! Does this RPR test hint at antiphospholipid syndrome, too? Or "just" lupus?

NCWHS, I hope this makes you even more determined to ask for lab copies. I don't even think you "have to" understand them all. (How could we understand all without being doctors, anyway?) But if you have your own file, you can always provide copies prior to a consult; switch drs. if absolutely driven & have something right on hand to share; etc.

All my best to you & to Goldenwings, too (natch). Vee

Hiya Again,

Think I have worked a bt more out.

VDRL or RPR – these are tests for syphilis. Their reagents are made of cardiolipin and they will give a false positive result for both anticardiolipin antibodies and for lupus antibodies.

The Anticardiolipin Antibody Syndrome (Lupus Anticoagulant) is caused by an antibody response against phospholipid (a major component of the cell wall). The antibody response results in a heterogenous group of clinical conditions including blood clots, stroke, heart attack, low platelet count, spontaneous abortions, and vague neurologic symptoms. This abnormality was first identified as a prolongation of the clotting test (the PTT) in persons who had systemic lupus erythematosus, therefore the name lupus anticoagulant was coined. Although there is a high incidence of this in persons with lupus, it occurs in many persons without lupus and does not predict future development of lupus. Although some persons have prolongation of clotting tests, they do not bleed but are instead prone to the development of blood clots.

Bit long winded, but I think this throws more light on your question Veej. I hope I have got it right, if not can you let me know and I'll edit it out. Thanks.

Take care.

goldenwings :angel:

Dear NCWHS,

VeeJ and Goldenwings are so good at giving the technical explainations to aspects of this disease. They have explained much to you as they do for all of us when we first come here. It would be a very good thing if you could get all your test results and either post them or ask about a few at a time. VeeJ and Goldenwings are so good at deciphering them.

However, I am sensing that you are feeling overwhelmed and just want to run away and hide. A large part of me felt that way too. As much as I wanted to know what was happening to me, I also wanted not to know. I imagine others felt the same way. The thing is, when these tests are explained and you understand more, you will not feel so overwhelmed and you will begin to feel more in control of your own fate again. Please get the copies from your Dr. There is help here with all you are feeling.

May God Bless and Keep Us All
Patience 50 :wave: