Living With Lyme

PART VI: LYME DISEASE POST-TREATMENT - 1999 UNTIL NOW

    I eventually returned to San Diego with the intention of following up with my physician, and then within a month I got a job in New York and moved to Rye, New York.  I went to see a physician in New York when my insurance kicked in several months after I had been an employee.  I was given an MRI and it was confirmed that I had fluid in my hip socket. The physician noted that my pelvic tissue was popping and cracking, but did not link it directly with Lyme Disease. She said that sometimes a trauma to the tissue can  create an inflammatory cycle so that even once the initial trigger is gone, the tissue could still be responding to an inflammatory process.  She started me on physical therapy, which helped to relieve a lot of the muscular and soft tissue pain.   I was still going to work out regularly with good results. 

PART V: LYME DISEASE DIAGNOSED - APRIL 1999

    On that fated day 6 weeks into my Doxicyline standard therapeutic low dose regimen, I realized that whatever was happening in my body was something about which I had to trust myself.  In other words, I had tests that were coming back positive or equivocal positive (which is more than I can say for many Lyme patients), and yet I was still getting mixed messages.  My father and my primary internal medicine physician believed I had Lyme disease.  The Borrego Springs, CA Health Department had not counted my case as a reportable Lyme case.  The Physician's Assistants and two other physicians I had seen on the recommendation of my internal medicine physician had said they believed I did not have it at all and would not even entertain the idea or read any of the research or alternative treatment protocols that had been published at that time. 

    My previous experience 11 years prior with multiple physicians had continued to put it back on me as if it was my inability to deal with or process stressful situations.  Yet there I sat at my desk with Lyme Disease.  I had migrating arthralgias in my arms, hands, and fingers, and extreme joint pain all over my body after 6 weeks of what was considered to be standard antibiotic therapy treatment protocol.  I could have stopped there.  Yet, I had done enough reading to be really scared of letting remaining bacteria go unchecked.  I knew I had never felt that way before.  I could not imagine feeling that intense pain for the rest of my life.   I  believed the only way through to the other side and finding pain relief was through intensive antibiotic therapy.  At that point my choice was actually rather simple.  On one side, I could continue with intense pain and increasing debilitation.  On the other side, I could try the high dose antibiotic therapy treatment protocol I had found in a detailed paper on the web authored by Joseph Burrascano, M.D. to see if I got pain relief in time.  I simply needed to find a physician willing to treat me.  Guess which option I chose!   

PART IV: LYME DISEASE SEMI-DIAGNOSED - FEBRUARY 1999

    On February 6, 1999 I went on a camping trip for the weekend with my then boyfriend.  I was really excited, because he was involved with the California Wilderness Basics Course.  For those of you who don't know what that is about, and I'm suspecting that would be most of you, it is an annual course that is provided every year from January through April in San Diego, CA.  They hold it in a huge hall in Mission Valley and hundreds of people, possibly thousands, join each year.  It is relatively reasonably priced.  You pay for weekly courses held on Tuesday nights about basic wilderness and camping education and then once a month you go on a camping trip.  The first trip is a car camping trip, the second and third trips you park and hike to a camping location, and then the fourth trip you go camping in the snow, hike to a location, and build an igloo.  So, who would think that my first camping trip out I would get a tick bite and come home with Lyme Disease?  Better yet, who would think that this particular tick bite would activate the underlying pathology remaining unchallenged in my system for 11 blissful uninterrupted years? 

PART III: LYME DISEASE UNDIAGNOSED 1988 TO 1999 - 11 YEARS UNINTERRUPTED

    A significant period followed the year of improperly diagnosed symptoms in 1988.  The Lyme Disease enjoyed 11 blissful uninterrupted years until 1999.   During this time, I withdrew from Oklahoma State University and my study of Speech-Language Pathology.  I thought I had lost the talent for it, and with that I lost my passion for it.  When I withdrew from my classes at Oklahoma State University, I never explained to my parents that it was because I could not understand what I was reading in my text books and that I would study the same paragraph for two hours at a time with no comprehension.   My mother freaked at the thought I was dropping out of college.  My father suggested I move home and look at smaller private schools to get more of a personalized educational experience studying whatever I wanted to study.  He simply wanted me to stay in the game and hoped I would finish by default.  I reluctantly agreed. 

    I looked at many schools out of state, but decided it was most comfortable to remain in Tulsa living at home and finishing my education.  I noticed a lot of changes.  I was suddenly dyslexic in my class notes.  I had trouble retrieving words when talking.  My handwriting was sometimes quite legible and other times it looked like chicken scratch.  I spent about 4 hours a night studying and I had to employ multiple techniques to recall information.  I would have horrible migraines with regular frequency.  Sometimes the migraines were so severe I would throw up and pass out on the carpet in the bathroom in the middle of the night when up late studying.  I had a lot of insomnia.  Slowly I was able to adjust to my new life and a certain level of confidence returned.  I finished my Bachelor's of Science Degree  in the field of Psychology from The University of Tulsa. 

PART II: LYME DISEASE UNDIAGNOSED IN 1988 - MEET THE DOCS

    When I got home to Tulsa, my mother immediately started taking me to physicians to try to figure out what was going on with my quickly deteriorating health.   Keep in mind, my father was and is a physician.  There is usually an unspoken rule between physicians that they will do everything within their power to help family members of other physicians.  In other words, they become more astute in trying to help and figure out the problems at hand.  Of course, Lyme Disease was never even a consideration.  In fact, not a single physician asked me about the possibility of a tick, mosquito, spider, or insect bite of any kind. 

PART I: LYME DISEASE UNDIAGNOSED IN 1988 - THE ONSET

     In 1988, I was attending Oklahoma State University and pursuing my undergraduate degree in Speech-Language Pathology.  I moved into a beautiful four bedroom home with my girlfriends.  One of my girlfriend's mothers had a home that had belonged to her brother years prior.  She had been renting it for several years, and the previous tenants were four rugby players who trashed the house while they lived there.  We moved into a home that had been essentially neglected and abused for several years.  We cleaned, repainted, recarpeted, did household repairs, refurnished, and did some substantial gardening to clean up the yard.  We had cats and dogs, each other, lots of laughter, and it was really quite a charmed life.  That is, it was a charmed life until I was bitten by a tick and got Lyme Disease. 

MY STORY... THE SHORT VERSION

    Life can change in an instant.  My life went from an 85mph to a 5mph life overnight.  How?  In my case, I went out camping and hiking in Borrego Springs, CA.  Three days later I was in such intense pain I could not sit still and every single joint in my body was audibly popping and cracking.  Diagnosis?  Lyme Disease.  I got so sick so fast, I didn’t know what happened.

    Later, with a detailed medical history, my physicians determined that I had most likely been bitten by a tick back in 1988, when I had a year of improperly diagnosed medical symptoms, which included periodic paralysis.  At the time, I lived in a house with my roommates with a major tick problem, but didn’t put my strange medical symptoms together with my environmental exposure.  I don't really remember seeing or hearing much of anything in the media about Lyme Disease at that time.  There was not even a loose association between TICKS and LYME DISEASE in our awareness.  I simply did not associate the ticks in the yard, in the house, on our pets, and on me with the possibility of Lyme Disease.   Neither did family, friends, nor physicians.