Tuesday, October 8, 2013

Part Ten: Living with Chronic Lyme Disease: a long and difficult journey

Part Ten: Lyme Disease Diagnosed, and Still Doctors Don’t “Get it” 

My new "out-of the-mainstream-doctor/nutritionist" had been a God-send. The diets and supplements made me much healthier, but my doctor also noted the dips in my health that seemed to be cycling with some regularity, so after almost two years on her special diet and supplement regime, she tested me for Lyme Disease using the Western Blot IgM and IgG Blood tests.

These blood tests were sent to Igenex, a special lab for tick-borne illnesses, along with my medical history. At the time little was known about this special lab by regular mainstream doctors. This lab has both extra-sensitive testing equipment as well as specialists in tick-borne illnesses to properly review the histories as well as the lab results. Their conclusion was that I definitely had Lyme Disease and needed proper treatment. My IgG test was Negative (indicates current or old infection) and the IgM test positive (indicates current infection).

Because my IgG test was negative, but the actual test result paper read “equivocal” for all but one band, other doctors I worked and consulted with were not so sure that I should consider extensive antibiotic treatment without further testing to rule out a false positive test. Confused and not wanting to believe that I had Lyme, I took the advice of the regular mainstream doctors and asked my personal doctor for more testing. She agreed and a series of 24 hour urine tests were done following medication that was taken to flush out any potential antigens from my bladder walls. These test were positive. Lyme Disease could no longer be denied and as I read about this illness, I realized my history all made sense. My doctor also told me, what it took years for me to fully understand, that I was far sicker than I ever imagined.

I have since learned that testing for lyme disease is extremely difficult.  There are many different strains of Borrelia (lyme infection), and it is able to escape detection and treatment by mutating into a cyst form and hiding so that the immune system doesn't produce antibodies to kill it.  For this reason diagnosis by tests alone is NOT recommended and clinical findings must be considered as well, though in my case, my blood IgM test for active infection was positive, as were my urine antigen tests.

I then asked about my children and whether or not I could have passed it onto them during pregnancy as my pregnancies were so difficult and I had had the false positive syphilis (VD) test when I was very young. My doctor helped me to understand this false positive test had likely picked up the presence of my Lyme spirochete infection in my early twenties. I learned what many doctors do not know: Lyme can be passed in utero and my doctor agreed to test them as well. The results of their tests returned with a “strong positive”. Apparently they tested more positive than I did as their immune systems were not as damaged, having had the illness less time than me.They too had never had a tick bite or any rash excepting those that came with the usual childhood illnesses.

Their history indicated that their Lyme was most likely congenitally acquired.   Many doctors do not know that Lyme Disease can be passed in utero, and it is suspected that it may also be passed sexually. Fortunately, my husband seemed to be without clinical findings and went on to have a negative Western Blot test.  (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

 (*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)