The Trial to Diagnosis and Treatment of Neurologic Lyme

I am a 43 year old female with a history of SLE, asthma, and endometriosis.  I had a tick bite in April of 2008.  The rash was between 4-6 cm with a bull’s eye, but it was also very hot and inflamed. The first doctor prescribed 2 doses of 200mg Doxycycline, the second gave me a week@ 200mg per day, and my internist gave me a month’s supply at 200 mg 2 times a day after I had read about impact on immune-suppressed patients and experienced profound illness from the tick bite.  I seemed to improve, but had a lupus flare as a result of infection.  After taking the antibiotics for three weeks, I was told, the skin blisters and photo-sensitivity could be from the medication and discontinued the medication.  I seemed to be better, but later had issues with mild memory problems and brain fog.  Since this can also be attributed to Lupus, and infectious disease doctor said my Lyme tests were negative, we focused on Lupus causes.

In September 2009, I had another tick bite on my left armpit.  The rash had a faint bull’s eye, but was not inflamed like the previous bite. Because it was not the same, my first ID doctor implied Lyme infection was dubious the  first time, and a sense of “I could not possibly get this again”, I dismissed it.  Several weeks later I came down with what I thought was “Swine Flu”, took Tamiflu within 36 hours of onset, but was sick with fever, chills, and tremors for about 10 days.  I never seemed to recover, but attributed it to Lupus as a reaction to the flu.  I went from working out 3 to 5 days a week, to barely being able to maintain my household or personal care.  

In January of 2010, my resting heart rate was 100+ as noted by my rheumatologist.  I was sent to the cardiologist for an echo and wore a heart monitor for one month.  Resting heart rate remained in the 80 to 100+ range and there was at least one incident over 178 beats per minute without exertion or stress.

Cardiologist prescribed Calcium Channel blockers, but discontinued due to migraines.  Prescribed Beta blockers, but I did not want to take until we ruled out causes like thyroid, Lupus, deficiencies, etc. Lots of blood work.  No causes.  

Started to back track symptoms to Swine and tick bite when memory issues increased from a fog to obvious dysfunction.  Maybe it was not swine, but Lyme.  Looked at CNS Lupus, scheduled neuro-psych testing , infectious disease consult.  All takes six months or more to complete/schedule. MRI did not show lesions on brain, so the infectious disease doctor had a three month follow up. No treatment.

I am a 43 year old woman taking Namenda for dementia, I can barely type unless I look at every key, I can no longer articulate myself, spell, write what I think, plan projects and complete them like I used to. I am getting lost when I drive.  

I scheduled an appointment with a Lyme specialist. 42 vials of blood, SPECT scan of the brain and another MRI several trips to Northern Virginia and I am finally starting treatment.

I met with my internist and she agrees this is my best hope.  I need to be well again.  I have learned to adapt to Lupus and live well with it, but I cannot live well if my mind and health continue to deteriorate.