Question on Lupus

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Regular Member

Date Joined May 2010
Total Posts : 110
   Posted 9/18/2010 11:31 AM (GMT -6)   
I've read through the introduction of Lupus and really am still lost.
I was tested for Lupus and it was found negative BUT.. I have been getting these welt like liaisons
on my cheek bones and it seems like months to go away. Well it IS months. Thought it might be an allergy and did everything under the sun to make it go away. It is disc shaped and raised. I've looked at all the pictures for Discoid but it doesn't look like those. Maybe because they post the extreme pictures? Mine were always hitting on the left cheekbone and this time it's on the right.

Anyway... I had them do a biopsy and the pathology report came back as inconclusive.. but notes state that it has Lupus Properties.

I am already being treated with MTX and the dermatologist is supposed to be calling my Rhuemie to discuss this with her then call me back. Of course nothing moves as fast as we want it to.. grrrrrr...

I was tested for EBV and it stated Yes I did have it.. No it was not active, Yes it was recent. I also have Congenital Ocular Toxoplasmosis, Fibro, Psoriasis (mild) and Psoriatic Arthritis (reason for MTX).

Question is.. Has anyone been given a dx of Lupus w/o the positive blood work? I know there is a property you can have and your test will come up negative and have no idea if I have that but.. Anyone?

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 9/19/2010 9:34 PM (GMT -6)   
Dear Silly,

We all understand how you feel; lupus is a difficult illness to diagnose. It took years for the doctors to finally dx my 3rd daughter, Cheryl, with SCLE.

I was somewhat lucky in that my rheumy first gave me a tentative lupus dx last October, after I had only been seeing him for a few weeks, even though I did not have a positive ANA test. The clinical dx was due to my symptoms (sun sensitivity, malar rash), a positive anti-DS-DNA test, and the fact that I have lots of lupus in my family and a genetic tendency to develop autoimmune diseases.

Then a couple of months later he reversed himself and told me I probably didn't have lupus because he kept testing me and I always had either a negative or borderline positive ANA test. He told my it was a "lupus-like autoimmune disorder".

I did point out that I was taking serious doses of prednisone and Imuran (both immunosuppressants), so it was not too surprising that my ANA was frequently negative.

I didn't have a REALLY positive ANA test until August of this year. As soon as he saw that I had an ANA titer of 1:160, he said, "OK, you have lupus". Well, not that I wanted to have lupus, but it's sort of comforting to be out of diagnostic limbo.

In the meantime I've also been dx with Lyme disease and 3 co-infections (Babesiosis, HME, Bartonella). I've learned that ANYONE with fibro plus AI diseases (especially lupus, RA, or MS) should consider visiting a Lyme disease specialist to find out if they have Lyme. Lyme can both mimic and trigger AI diseases and fact, most of the people I know who have Lyme were first dx with fibro and/or lupus and/or MS (or any combo of these).

Have you ever been tested for Lyme? This is just a suggestion of course, since I am not a doctor so cannot give medical advice, but you might want to explore that possibility, particularly since you tested positive for EBV.....I too tested VERY positive for EBV and CMV. Lots of Lymies have very high viral loads, because Lyme suppresses the immune system (literally turns part of it off) so you become very susceptible to infection.

I don't know if any of this has been helpful, but I hope that you get your answers soon!
Wishing you peace and healing....
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Mepron, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec
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