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Lupus/what could this be?


It started a couple of years ago. I went from low/normal bp to stage 2 hypertension. Had bad EKG that showed extreme fluttering of atrium. The doctors put me on metopolol and my bp went down to 84/43 within a couple of months. Extreme tiredness, mouth ulcers and rashes including an access started to break out. Tested positive 1:320 on ANA. Positive for sjogrens or other connective tissue disease and lymphocytic microscopic colitis. Tested negative for SSA and SSB which says to me that it's not sjogrens. Doctor's say it's only fibromyalgia but medication has helped nothing. My entire back went out this past winter. All of a sudden I have multiple buldging discs, disc on disc, an annular tear, scoliosis throughout my spine even in my neck, and osteoarthritis throughout my spine. As far as I know fibromyalgia doesn't cause literal deformities in your spine. Please help me figure out what is going on. I get chest pains all the time and my back kills me. They said in order to fix my back I'd have to have every disc replaced which I already know they're not about to do that.

Hi Mari

Thanks for writing in.
I am not a doctor, just another lupus patient.
I've lived with lupus for 20 years and have experience being treated with mainstream medications, alternative medicine, and diet modification. That's my background. I'm not a diagnostician. However I have gone from near-death and being on 9 medications plus chemo and transfusions to very healthy. I even take tap dance lessons now, in my 40s. Recovery is absolutely possible, but diagnosis- correct diagnosis- must come first.

You need someone who is really good at getting to the bottom of what's going on with you. Yes there are some signs of autoimmune activity, but this does not sound like any lupus I've ever heard of. You may need 2nd or 3rd opinions, and you may also need to look outside mainstream medicine. There's now "functional medicine" where they take all kinds of tests  (these are MDs who instead of just covering symptoms with drugs try to actually address the root of the problem).

Dr Mark Hyman is at the forefront of this kind of medicine. If you aren't near enough to become his patient, perhaps he can recommend someone in your area who practices the same kind of medicine.

You might also ask yourself if anything unusual has happened to you in the last year or so. Traumas, stresses, pollutions, exposures to chemicals or radiation, big life changes. This might help to identify what triggered the problem, and get you closer to the right diagnosis. Diagnosis is so important! How can you know how to proceed if you don't know what you're dealing with? So, that is my wish and hope for you- that you are correctly diagnosed soon, so that healing may begin.

All my best-

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"


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Carla Ulbrich


I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.


I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

Past/Present Clients
Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

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