Over the past one and a half years plus, I exhausted two internal medicine doctors, two neurologists, two endocrinologists, a cardiologist, an ophthalmologist, a gynecologist, two psychiatrists, three psychologists and three primary care physicians. These doctors ruled out thyroid disease, adrenal fatigue, anemia, anorexia, myasthenia gravis, hemochromatosis, lymphoma, leukemia, cancer, lupus, syphilis, amyloidosis, sarcoidosis, cardiomyopathy, fibromyalgia, 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.
After all of this, I was treated with medication for anxiety and depression and the treatment was relatively ineffective. I was also encouraged to exercise. (Exercise?! I can't get up the stairs sometimes! And my echocardiogram & stress test at age 36 "had the results that a 55 year old would have".)
My symptoms for the last year and a half have been, in the following progressing order :
ongoing weight loss
severe 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.)
I also had random but more nagging symptoms like:
peeling finger nails
recurring rash on the palms of my hands and feet
tremor in my hands
increase in facial hair
heavier menstrual periods
I'd also like to note that two recent fellow lyme disease sufferers experienced paralysis on one side of their faces.
Without anywhere or any doctor to go to next, I was diagnosed, or more accurately "categorized" with Chronic Fatigue Syndrome, which, as I was told by my second neurologist and 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'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. Chronic Lyme Disease begins by a deer tick bite carrying Borrelia burgdorferi, a bacteria, that first spreads locally (50% of bites present a rash at the site of the bite) and then becomes systemic.
That's 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.
There is standard laboratory blood test for lyme disease and another more involved lab test called the Western Blot test. The latter is also used to test for people with HIV. Both of these lyme blood tests can offer false negatives simply because the bacteria are no longer in the blood. The Western Blot test encourages certain bacteria to adhere to certain proteins (calcium being one of the most common), and based on the proteins that the bacteria adheres to, they reveal themselves as lyme.
The prognosis for Chronic Lyme Disease is excellent. I'm told that as long as I take the antibiotic long enough to find all hidden bacteria, then I should be free of Lyme for the rest of my days. Tetracycline is apparently the most effective antibiotic, though there are two other antibiotics that are used as well. I'm on Tetracycline now.
The doctor informed me that my symptoms would worsen over the next 2 months or so of antibiotic therapy, but to knuckle through it; By the third month I should be feeling better. The antibiotics have to spend time locating the bacteria, then the bacteria will become violently active as they are attacked... thus the sudden worsening of symptoms before feeling better.
The reason for continuing the antibiotics beyond the first 3 months, or beyond "feeling good again", is to be sure we've given the antibiotic time to find all the lyme bacteria in one effort. If not, I could have a reoccurrence of symptoms later, and a second round of the antibiotics would be less effective and likely unsuccessful.
The infectious disease doctor that has finally diagnosed me specifically with Chronic Lyme Disease is stating confidently that lyme or some other similar bacteria have been hiding out and wreaking havoc in my central nervous system. He believes that the bacteria have likely been causing me trouble for as many as the last 10 years, and could have been bitten back then when I was an avid mountain biker. Lyme could even have been the cause of some of my postpartum symptoms of anxiety, dementia, hyperthyroidism, and severe fatigue - simply in response to the stress of childbirth and my subsequent recovery.
I'm going to be taking 1500 mg of antibiotics (Tetracycline) daily for the next 9-12 months. I've been on that regimen for about two weeks so far and I am so hopeful at last - even though, true to the doctor's word, my fatigue and anxiety have sprung like gangbusters.
I have found
this article to be very helpful to my understanding of the process of Lyme Disease.
