You are here:

Lupus/Lupus Dx?


I am a 57 year old female with longstanding osteo-arthritis.  I now have severe bone spur formation throughout my spine and my knees are bone on bone.  For 30 years I have had "reactive airways"  Any upper respiratory infection would trigger , getting easily winded and the sensation that I couldn't take a breath.  Breathing test showed compromised lung function but inhalers and nebulizers didn't help at all. About two years ago, I had chronic sinus inflammation which lead to constant sinus infections and airway involvement.  I started to get low grade fevers (99-100) and would start to sweet out of the clear blue.  I had brain fog, fatigue and felt miserable.  Blood work was all over the place with sky high markers of inflammation such as sed rate, c-reactive protein etc etc.  I went to an ENT who sent me to a rheumatologist, immunologist and infectious disease doctor.  Everyone agreed that I have systemic inflammation but could not pin down what the cause was.  The immunologist was convinced that there was some type of auto immune/connective tissue disease that has not yet presented itself.  Ten months ago, I suddenly developed a large effusion.  A liter of blood was drained.  The blood started to re-accumulate and this time, I was in tapenade (upper right chamber was collapsing)  I had a pericardial window.  The biopsy of the pericardium showed both chronic and acute inflammation.  I continued to have pericarditis despite taking colchicine.  I developed tachycardia, elevated blood pressure and eventually palpations.   Echos and a 36 hour heart monitor were negative for heart valve involvement or arrhythmias. A cardiac MRI revealed continued pericarditis.  I was recently put on a calcium channel blocker which helped with the tachycardia, elevated blood pressure and palpitations. I sporadically feel as if there are sores on my gums but I don't see any. My nose has been so dry the past four or five months

Two weeks ago, repeat blood work reveled elevated homogeneous ANA 1:320.  A rheumatologist diagnosed me with lupus and started me on plaquinil. I am seeing an ophthalmologist for a baseline eye check next week.  When I read about Lupus, I don't have a lot of the symptoms described.  I do however keep reading that late onset Lupus could have a different presentation but I have not been able to find out what the late onset presentation is. The dx surprised me. Despite the ANA readings, the double stranded DNA was normal Does my history point to the possibility of lupus?  I am debating going for a second opinion


Thanks for writing in.
I am not a doctor, but a lupus patient (diagnosed 1993).
I've also been diagnosed with Sjogrens, Raynauds, Fibromyalgia, lupus nephritis, stroke, congestive heart failure, anemia... i've lost track, but the good news is my kidney failure and congestive heart faliure are reversed/ in remission, as is the anemia and lupus, with no drugs. I am also fully recovered from the stroke.

I remember well how frustrating it was knowing that i hadn't yet been diagnosed properly. How do you start dealing with a problem before knowing what the problem is? My doctors threw antibiotics at me for several months, which on served to send me speeding downhill healthwise.

Once I did get my definite lupus diagnosis (I *did* have all the symptoms), I started reading up, and eventually I learned that mainstream medicine is never going to get to the root of the problem when it comes to autoimmune disorders. Alternative medicine does a much better job with chronic illness. Regular doctors just have 2 tools: drugs and surgery, both of which can be quite dangerous. Those tools are great for emergencies, but cause a lot of problems when used repeatedly, as with chronic illness.

I suggest that while you are trying to put all the puzzle pieces together, and while you adn your doc are trying different things to help you get better, keep a journal of all your symptoms (and all your treatments) and how you feel each day (pain on a scale of 0-10, energy 0-10). You can do this using an app like "symple" if you have an iphone, or write in a spiral notebook, or download the "Symptom Tracker" I created (it's free. Go here: ). If you go to see an alternative medicine practitioner such as an osteopath or acupunturist, they will be very interested in looking at all your data.

My biggest improvements have come from eliminating food i was allergic to (and didn't know it) (in my case, gluten, dairy, eggs), removing things like nutrasweet/ aspartame from my diet (reformed Diet coke addict!), getting enough rest, enough fun, regular massage (twice a month) and, during time of severe illness, getting chelation therapy and lots of Chinese acupuncture.

A few books you might find useful:
Eat to Live, Joel Fuhrman
Never Be Sick Again, Raymond Francis
How Can You NOT Laugh at a Time Like This? (my book on how I got better)

A website I find very inspiring (an MD who *does* use supplements and diet modification to help patients reclaim their lives):

I hope some of this is of use to you.
I wish you all the best-


Carla Ulbrich

The Singing Patient

Humor, song and hope for people  who need it most- patients and healthcare workers  


All Answers

Answers by Expert:

Ask Experts


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

©2017 All rights reserved.