Friday November 11, 2011
Approximately three years ago I spent a frustrating and intermittently physically debilitated five months before being successfully diagnosed and treated for borreliosis infection, also referred to as Lyme Disease (LD). I recently went through mitral valve repair surgery. the possibility exists that the severe prolapse developed during the infection (if indeed it has been eradicated).
Every organ and organ system can be affected by untreated LD. I was relatively fortunate. some patients are not treated until symptoms have progressed beyond repair. When the disease progresses enough chronic symptoms often persist, even when treating with aggressive antibiotic mixes, numerous complimentary and alternative therapies and a nutritional regimen targeted to repair damage caused by the disease and boost the immune system. Early treatment and diagnosis are critical. it recently took 12 to 14 months before a positive serological (blood) test for LD is now initiating a monitored antibiotic treatment schedule for my mother Karen.
Given my history with LD, various Board of Health membership dinner lectures by state health officials, and personal research I thought that I was a fairly educated nonprofessional resource and advocate for care. Early on and during Karen’s journey toward diagnosis and treatment for fatigue, depressive symptoms, intermittent yet persistent weakness, loss of appetite and a host of other clinical and non-specific symptoms, my requests for monitored LD antibiotic treatment, a very good LD diagnostic indicator, met with the same response — another test was ordered. When it came back negative (there were four or five negative results before a specialized test from Pharmasan Labs confirmed a positive infection for a $600 fee) psychopharmapsyeudicals were experimented with and tested for the “right mix.” Intentions were good, but reliance on blood tests to diagnose LD is unreliable. these tests are often incorrectly negative.
I take responsibility for having known this and not requesting treatment in writing, despite negative results, and then finding a LLMD (Lyme Literate M.D.) who would have expedited and monitored such a request. Absent a bulls-eye EM rash (often accompanied with fever) LD is diagnosed based on clinical symptoms, history and a response to treatment. no test can definitively rule out LD, though accurate and knowledgeable interpretation of lab results is important to this diagnostic and treatment exercise. Over reliance upon a positive lab test result is cause to search out another more literate practitioner.
It is your health care clock, dollar and choice — and it may be ticking toward continued disease if you do not practice the well established consumer rule: caveat emptor (buyer beware).
DEAN FULCO
Richmond
The writer is a member of the town’s board of health.