Welcome to Lyme City

I was diagnosed with Lyme Disease.

It took me at least 18 doctors, 8 different medical facilities, and 1.75 years to find this diagnosis.

I exhausted 3 primary care physicians, 2 internal medicine doctors, 2 neurologists, 2 endocrinologists, a cardiologist, an ophthalmologist, a gynecologist, 2 psychiatrists, 2 psychologists, a gastroentrologist, and an infectious disease doctor. I'm sure there were others. These doctors ruled out thyroid disease, adrenal fatigue, anemia, anorexia, myasthenia gravis, hemochromatosis, lymphoma, leukemia, cancer, lupus, syphilis, amyloidosis, sarcoidosis, cardiomyopathy, fibromyalgia, celiac disease, Parkinson's disease, multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS or Lou G Gehrig's's disease), and lyme disease! ...Standard blood tests ruled out lyme disease three times.

I couldn't open doors, turn my steering wheel, or climb stairs without great effort and exhaustion. I was so exhausted that I could sleep all day and night and still feel weak and tired. Sometimes my vision would suddenly go out of focus and I feared I might go blind instantly. I was losing weight - 15 pounds that I couldn't put back on despite my healthy starting weight and ample eating habits. I was hyper-anxious and fighting depression and falling into deep despair.

After all of this, I was simply treated with unsuccessful rounds of medication for anxiety and depression. I visited an out-patient facility for 3 days and clearly did not belong there. I was also encouraged to exercise. (Exercise?! I can't get up the stairs sometimes! And my echocardiogram & stress test at age 36 "were the results of a 55 year old".)

My symptoms appeared and amplified in a frighteningly progressive order :

ongoing weight losss
evere anxiety & depression/despair
short term memory loss & confusion
SEVERE overall fatigue
Shortness of breath
Muscle weakness in arms and legs and difficulty climbing stairs or opening doors or turning the steering wheel in my car
Muscle cramps/spasms in my legs
Strong muscle "twitching" (for example: my arm will involuntarily leap up over my head while I'm falling asleep.. or my stomach muscles will belly dance involuntarily...or my hand will suddenly squeeze an imaginary ball 4 times in a row... It's all so WEIRD.)

Like many with this tricky disease, I was first diagnosed with Chronic Fatigue Syndrome, which, as I was told by my second neurologist and near final doctor, basically means that all my doctors are stumped and have nothing else to call what I was experiencing -– at least not until my symptoms progressed into one of the disorders that I had already been tested for; or until my symptoms simply disappeared. I was told he sees 2 patients like me each month that "claim to have some "mysterious disease".

I'd had every blood/urine test, brain & body scan, and physical or neurological evaluation that I could imagine and they all turned up nothing.

I started telling everyone and anyone that I had been diagnosed with Chronic Fatigue Syndrome hoping that someone with experience could tell me what to explore next. That's when a friend's Mom, had a friend, who had been diagnosed with Chronic Fatigue Syndrome and was finally correctly diagnosed and successfully treated for Chronic Lyme Disease.

The the trick in diagnosing Lyme Disease: Apparently, lyme bacteria becomes systemic shortly after it enters the blood and then there is really no way to test for it once it leaves the blood and enters your body's cells. Once you have the bacteria, it finds a home in random cells in your body, and lies dormant, sometimes for years, and only becomes active during periods of stress. Each subsequent stress period brings on new and/or more severe previous symptoms. It would seem that the bacteria get stronger with each bout of stress in defense of their restful home in your cells.

My infectious disease doctor, after looking at my (abbreviated) 21 pages of medical history, pronounced me near death on arrival - er, I mean, pronounced me as having Lyme Disease. I felt like I was near death. Or at least close to causing my own. Scary.

I'm going to be taking 1500 mg of antibiotics (Tetracycline) daily for the next 9-12 months. Then in the spring start eurethromycin or biaxin with plaquenil (a malaria medication!)

I'm hopeful that I've found my diagnosis, but I'm still listening to other fellow "mysterious disease" sufferers for other possibilities! There is a great community on healingwell.com that I have recently and thankfully found. Community is good. I've been lonely in this city for a long time.