Monday, September 9, 2013

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

Part Two: Abnormal Findings, but Not Considered Significant

Lyme disease is caused by Lyme Bacteria, Borrelia burgdorferi that is often, but not always transmitted to people through a tick or other insect bite. Lyme bacteria takes different forms, but often it is the spirochete form that first penetrates and infects human cells. Spirochetes have life cycles and so I erroneously reasoned that if my symptoms were cyclic, they must be related to the only cycle I knew I had, though sometimes the pattern of feeling good or bad did not seem to coincide with my female hormone cycle.

My hormones were raging and tumultuous at best and with them my menstrual cycles very hard and painful. My girlfriend in college used to laugh and tease me, asking how many days before or after my period, as I blamed everything on them, not knowing that I was in fact harboring spirochetes whose life cycle were truly making cycles of varied states of well-being in my body.

My validation for spirochetes being present in my young adult years, came when I had a false positive syphilis test during a physical when I went to work in a California hospital after my second year of college during my summer break. Apparently a VDRL test was done routinely for employee physicals and the results of mine came back positive. I was clueless, when they asked for ”my contacts”, I thought they meant the ones in my eyes.

It only took a brief examination to confirm that I was indeed a virgin and that naive! The doctor didn’t see then that fatigue, and achy joints along with this false positive test could be significant, though perhaps to gain employment I failed to mention my complaints. Syphilis is a spirochete, similar to the Lyme spirochete and hence showed a false positive VD test.  I also didn’t know, and neither do many doctors that women with Lyme have unusually hard and painful menstrual cycles with exaggerated PMS.

As my symptoms often came and went, I was optimistically fooled as many are, that I simply suffered from different acute and short term illnesses.  One doctor even thought that I was ill more often simply because I was a nurse and exposed to more “bugs”.  At the time this made perfect sense, though as a child I was never sick, and my peers weren't experiencing the same struggle with their health as they practiced nursing.

After college,I thought perhaps my fatigue was related to shift work, which didn't agree with my body. As a newborn nurse, we would often donate blood to assure that our tiny patients received only blood from healthy subjects. Mine was tested and not acceptable due to a positive CID Titer (Cytomegalic Inclusion Disease), another sign that all was not well within, though I didn't feel ill most of the time. I reported this finding to my doctor, but again he had no answer for me. He felt, no treatment was needed, as to him I appeared nothing less than a healthy young woman.  Lyme Disease, I have since learned, mimics many different illnesses and so it is not surprising that my doctors were as fooled, as I was.

I knew nothing of Lyme Disease and even if I had, I wouldn't have given it a second thought. I had never been bitten by a tick or experienced a bull’s-eye rash and my come-and-go-symptoms fit most common acute  illnesses.  I have since learned that many stricken with Lyme don’t recollect having a tick bite or any sort of rash, much less the hallmark symptom of a bulls-eye rash. Rashes can also go unnoticed if they are in an area that is hard to see. I did grow up in the era of Hair and had sufficient hair on my head to cover most of my body. (to be continued...)

(The illustration above is done by Hannah McMillen; 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.)