Some Points My Story Expresses....
• Bottom Line: The majority of Physicians are not aware of the many symptoms of Lyme disease, how to properly read test results, or the proper treatments. If a patient goes on-line and reads the famous study by Dr. Joseph Burrascano, he will be more informed about Lyme than most doctors.
• The majority of those who have Lyme took many months or years to be diagnosed. In my personal case, I was lucky that it took only eight months.
• The public is completely ignorant to the serious effects of this disease; I was fired from my job after requesting time off, and berated by my co-workers and friends for my “unusual behavior” when I “looked healthy.”
• Doctors still believe that the only people at risk for this disease are the ones who spend time in the deep woods. The reality: gardening, owning a pet that goes outdoors and unprotected sex can all result in Lyme Disease.
My Personal Saga --
Before Lyme
I was a different person before Lyme Disease. I moved out at 18 and supported myself through college. I did 18 credit semesters and worked three jobs. I graduated a year early. By the time I was 22, I owned my first home. At 24, I began consulting out of my home. I was on track to sure success....until March 1997.
The Misdiagnosis
My illness began in March 1997, with severe sinus headaches. My Primary Care doctor suggested that I had allergies, and sent me home with Allegra. The headaches rapidly became so painful, I often burst into tears. Additional visits to my doctor resulted in the same allergy diagnosis. In the following months, I developed constant dizziness, and a lack of depth perception.
Driving, walking up and down stairs and basic concentration were all extremely difficult by May.
In July 1997, I suffered a vertigo attack in a restaurant, where I eventually ended up laying flat on my back on the concrete in front of the establishment. Now, my doctor insisted I had "the dizzy virus," and told me to stay home in bed for a few days.
That week, the severe fatigue set in: I woke up tired at 7am each day, dragged myself through work, and came home and went to bed by 6pm. I slept through entire weekends, only waking to eat. I became so dizzy that nausea set in, and I my weight dropped over 10%. It was now impossible to simply function through a single day, and I was extremely depressed. I began seeing a counselor for the first time in my life, afraid that my symptoms were "imaginary."
In October 1997, eight months after my first symptoms began, my Primary Care Doctor sent me to my first specialist: An ear, nose and throat expert. He looked at me and insisted that everything was fine with my ears, but suggested I come back to his office if the problem continued. A week later, I found myself back at the same office, this time seeing a new, young partner....Dr. S.
He ordered an MRI, an ENG and some standard blood work.....including a Lyme Titer test. Although Dr. S had ordered all my tests, my Primary Care office collected the blood samples. Several days after giving the sample, I called the Primary Care Doctor and was informed that the results of my tests had not yet come in. Two minutes later, Dr. S let me know that my brain was healthy and my ears were normal...but the Lyme Titer test was positive.
Discovering Lyme and WHO to Trust
I was terribly confused, and not sure which Physician to trust. I called the Lyme Disease Foundation in Hartford, CT and LymeCure in Wayne, PA. After answering many questions, they faxed me some information, including a Lyme study written by Dr. Joseph Burrascano. After reviewing this study, I was shocked to find that all of my symptoms were on the list.
Self Education is the Key
I called my Primary Care Physician, who was EXTREMELY irate that Dr. S had "wasted his time" testing me for Lyme. She explained that since my "joints didn't hurt," that I could not have Lyme, and that the test results were incorrect. I explained that I had a list of symptoms in front of me, and that they did indeed match the disease. After a LONG pause, she replied "Oh," and offered to send my blood sample for a Western Blot.
That was the last time I heard from her; she never even contacted me with the results.
Now having an answer to my medical mystery, I went to my supervisor at work to explain why I had been feeling so poorly. I explained that I might need to take a week or two off work, as I had read that symptoms worsen during treatment, and I was barely functioning as it was. He was sympathetic and assured me that my performance was excellent.
Finding My Hero
Now having NO confidence in my Physician, I again contacted the Lyme Disease Foundation, who suggested I contact “Dr. Buonincontro.” After calling his office, and discovering he would be out of town for a week, I burst into tears. I explained my situation to the receptionist, who offered to take my chart over the telephone.
That night, I picked up a prescription, and was scheduled for the first available appointment.
In November 1997, after I had met Dr. B, I finally felt hopeful. During a one hour informative meeting with this new doctor - who had himself contracted Lyme 13 years prior - I was shown HOW to properly read a Lyme Titer and Western Blot test.
He also gave me an idea of the time frame in which I contracted Lyme. It fell into a period when my professional office building was having a mouse infestation problem; I had myself caught two mice in my cubicle. As mice are carriers of Lyme, and then give the disease to ticks, I felt it was possible that an infected tick picked ME for lunch. And since I was one of 60% of patients who did not develop a “bull’s eye rash,” I was unaware of the bite.
Lack of Sympathy and Understanding
Treatment did indeed make me feel worse, and again I expressed my concerns to my Supervisor. My co-workers had been, and still were, treating me like I was crazy, as they had never heard of anyone being so ill from a simple tick bite. One co-worker insisted that I was only acting in this manner to "get attention" and since I didn't "look sick," that I must be fine.
She even went to my Supervisor and reported that I had spent a great deal of time on the phone with my Doctor, and I was reprimanded. Keep in mind that during my 8 month illness, I had missed one day of work.
Fired from Work
Mid-November, I was fired from my position, given the reason that I was "talking socially to a co-worker during work hours." I now had no income, was too ill to interview, and secretly considering suicide. I hired a lawyer, made more appointments with my counselor, and stayed in bed most days.
After about eight weeks on treatment, I finally began to feel better. The improvement was only about 20%, but I was thrilled. I had luckily found a new job, a Vice President position with a local non-profit, but waited another month before starting. I continued treatment through the Summer of 1998, with Dr. B re-testing me every 6 to 8 weeks to determine my progress.In October 1998, one year after treatment began, I was almost symptom free. I was very lucky to find Dr. B.
Warning Others
Since getting Lyme, I have become an "educator" of sorts to family, friends, work associates, etc. Most knew very little about the disease. When they asked their doctors about the disease, they discovered how ignorant most really are.
For example, one of my co-workers decided to get the Lyme vaccination this Spring. I explained to her that she must be tested for Lyme BEFORE getting the first shot; when she mentioned this to her doctor, he was unaware that the vaccine would make a Lyme infected person worse! Another close friend called me from Virginia one morning, claiming that she had a bull’s eye rash on her arm.
I told her to see her Doctor and mention Lyme; he actually had to LOOK UP the disease in a book, and sent her home to "see what would happen." She actually had to relay MY SUGGESTIONS to him before he gave her antibiotics, and agree to test her later.
After Lyme
I continue to suffer with mild rebounds of fatigue, dizziness and nausea. But due to my own fears of possibly becoming ill again, I purposely stopped moving ahead with my life for the last three years; I have avoided romantic relationships, ceased going out socially with friends, turned down opportunities to move out of state, discontinued consulting, and put my career on hold.
After a very tough rebound in February 1999, I wrote my will at the age of 27. I am grateful that I have a disease that is treatable, and I accept that I must deal with it for the rest of my life. However, due to the obvious ignorance that surrounds this illness, I am terrified as to what my future holds.
And most of all, I am afraid to move away from Dr. B, the only Doctor who holds my confidence.
Please...help us to educate Doctors and patients about this rapidly growing disease and the ignorance surrounding it. Please feel free to contact me at your convenience.
UPDATE
Not AGAIN...
In December 1998, I had a bad dizzy spell and my right ear began ringing. It has not stopped since, and has created great great stress for me. Trips to two ear experts accomplished nothing; but I haven't given up hope.
In July 1999, I suffered a very serious and traumatic panic attack in the middle of the night. My ear was ringing extremely loudly, and my head hurt so badly that I wanted to hurt myself. The first thing that saved me was my cat, September. She was following me around the house, meowing, and kept licking my leg as to say "It's okay, mommy!" I called a crisis center, because I was afraid of what I might do. A good friend got out of bed at 2am to come over and calm me down.
I had just started a new job (as my previous one was EXTREMELY stressful and not helping my condition), and called out the next day, rattled. After a few trips to counselors and Dr.B, I was put on the antidepressant Zoloft. I left the new job to take a few weeks off.
The Magic of Zoloft
Within a month, I was laughing again: something I had forgotten how to do. My family noticed a huge difference in my manner...and I never had another panic attack. Although....my ear is still ringing and brings me close to an attack may times a week.
Finally Moving Forward
I soon accepted another offer as an Event Planner for a non-profit organization in July 1999. THIS is when GOOD THINGS began happening to me.
My new work environment was extremely positive. I began to put back on the weight I had lost many years before. I began to go out more....and met a wonderful man whom I am still dating. I adopted two more cats. But...I am still tired, and my ear is STILL ringing. But I feel so much better then when the whole nightmare started.
This summer (May 2000), I finally decided to get my Lyme Vaccination. I had been feeling considerably well, although I never have regained the energy I once had. Anyway, I went to see Dr. B only to discover that he no longer gives the vaccine! As I recall, he told me that the manufacturer failed to tell the FDA that the vaccine causes serious and untreatable arthritis in 25% of the human population.
He mentioned one patient who ended up in a wheelchair after the first shot! However, in the vaccines' defense, Dr. B did give himself the treatment last year, and he has experienced zero side effects.
As for me personally: I got my life back together, but never did return to the "fast paced" career track I had before. I often wonder where I would be now if that damn tick hadn't bitten me. I am terrified when I am outside pruning bushes or planting flowers. I will NOT go camping with my new love! Yes, I still am, in some ways, "holding back" on things I would like to do out of fear of again becoming ill.
But at least I am starting to live my life again....THREE and A HALF YEARS after I contracted Lyme....the disease many ignorant medical professionals still believe doesn't exist!! Now...if only I could find someone who could stop my ear from ringing....
More Updates on my Lyme Story
What do you mean, my doctor RETIRED?
October 2000
Although I knew it would happen eventually, I was VERY sad that my hero Dr. B. decided to retire. I discovered this after calling his practice upon my one year ZOLOFT anniversary; it was understood that I would discontinue the drug after one year. I visited with the new Dr. (Dr. R) that had taken over the practice, and we agreed to take me off the Zoloft. So far, the depression has not returned.
December 2000
Of course, as fate would have it, my sinus headaches and dizziness started all over again. Now, keep in mind that the only time in my life that I have ever had sinus headaches was when I contracted Lyme in the first place. So, after losing mr dear Dr. B to retirement, off I went to see Dr. R.
My lyme titer can back positive just a few days after my appointment. I was disapointed that I did not get the grand explaination and little pictures that Dr. B would provide to explain the disease. In fact, I wondered if the new doctor would be like my first; ignorant to Lyme. He placed me on the classic treatment for Lyme, which I tried.
January 2001
After a month on Doxycycline, I am still having the severe headaches that bring me to tears. I had a CT scan of my sinuses just to rule out any problems, and am awaiting on results; which I expect to be fine, as they were the last 2 times this was done. I feel as if this has all happened before...oh, that's right...IT DID.
So, I have another appointment with Dr. R this weekend....and in the meantime, am searching for another Lyme Doctor in my area. Anyone out there know any good docs in the Philadelphia/Southern NJ area????
Thank you, Jennifer
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