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A New Year, a New Diagnosis

January 6th, 2013

Lupus often results in a butterfly shaped, or mylar rash, on the face.

Lupus flares often leave patients with a characteristic butterfly-shaped rash.
Photo Credit: University of Minnesota

2012 went out with a bang as I found myself subject to another battery of lab tests to check for more autoimmune illnesses. Most of the time my blood screenings are perfectly normal, however this time was an exception to the rule. I received a dreaded call from my doctor’s office alerting me to the fact that I probably have Lupus, but they couldn’t be sure with 100% certainty.  Dr. House will tell you, “It is never Lupus.” But in the real world sometimes it is. The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus1.

Lupus, like Lyme Disease, is often called the great imitator because of its ability to mimic other diseases. Similar to screening for Fibromyalgia, other illnesses must be ruled out before a patient receives a diagnosis of Lupus. One would hope any screening for Fibromyalgia or Lupus would included testing for Lyme disease, however there are glaring inaccuracies in screening for Lyme bacteria. Blood tests for Lupus aren’t 100 percent accurate either. Sometimes patients have all of the symptoms without positive labwork, so doctors find themselves making a diagnosis based upon symptoms alone.

Much of my bloodwork for Lupus was negative, however I did test positive for the Lupus anticoagulent that can lead to blood clots. Also my body was producing a small amount of antibodies to double-stranded DNA (anti-dsDNA). These are antibodies that attack the DNA, the genetic material inside the cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus, but lupus can still be present even if these antibodies are not detected2. This autoimmune response means that my immune system cannot tell the difference between foreign invaders and my body’s healthy tissues causing inflammation, pain, and damage in various parts of the body.

I am a bit confused by this new diagnosis and I find that I have more questions than answers. Do I really have Fibromyalgia? How long have I had Lupus, if it is really Lupus? Did the Lyme bacteria and other tick-borne coinfections trigger this autoimmune response in my body? Will the Lupus go away after receiving proper treatment for the Lyme Disease? Could I have drug induced Lupus from the aggressive antibiotic treatment I have been undergoing for Lyme Disease and other tick borne coinfections? How will this new diagnosis impact my quality of life? Will I ever feel well again? Hopefully this new diagnosis will provide a better pathway to treating my illness, but as of now I am feeling quite ambivalent.

 

 

  1. Statistics on Lupus []
  2. Laboratory Tests for Lupus []

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  1. Pat Damiano
    January 6th, 2013 at 22:51 | #1

    Would like to view more.
    I’m Celiac , CFS , Fibro & false- positive for lupus between my endocrodologist & rhuematologist. .

  2. January 6th, 2013 at 23:17 | #2

    Pat, I am trying to gather more information. I will keep posting things as I learn more about what this new diagnosis means. How did you come up with a false positive for Lupus?

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