Why I believe I have Lyme Disease

Posted by Troy Eckhardt on April 26, 2009 at 1:26 am

Well, if you’ve read my previous health-related blog entries, you know that I’ve been sick. It’s been over four years now since my first symptoms started plaguing me. At this point, I’ve come to the conclusion that I have Lyme Disease. There are lab tests for Lyme, but they are not very accurate. I have taken only one, an ELISA work-up, and the result was negative, but I have read that there is a 50% false negative record for this particular test. Lyme Disease really has to be clinically diagnosed because of the lack of definitive and accurate tests. I have not taken a Western Blot test yet, but I plan to do so soon.

Most of my symptoms are sporadic, but every day this stuff just keeps tormenting me one way or another. On the best of days I feel like I have a bad flu and terrible muscle aches. On the worst days I say suicidal things that scare my wife. I would not actually commit suicide, but some days I really am in a lot of pain. Some pain is physical and some is psychological.

I have been told by doctors, just like many, many other Lyme Disease sufferers, that I need a Xanax, or that it’s all in my head, or that nothing is wrong with me. But I know that I did not go from being a normal 35 year-old man to a psychotic, hypochondriacal mess on July 31, 2005, which I call “the day I got sick.” (Some symptoms are a bit older than that, but on that day I knew for sure that something was drastically wrong with me.)

Lyme is a very politically charged disease. Many doctors are in trouble for the way that they treat Lyme because they believe that it takes long-term, high-dose antibiotics to kill late-stage Lyme Disease. Worse, IV antibiotics seem to be the best route to take. This is not a popular treatment plan with insurance companies because it is very expensive. Furthermore, the Infectious Disease Society of America, the body which sets the standard protocol for Lyme treatment, has decided that a very short course of antibiotics will treat late-stage chronic Lyme Disease. They maintain that any continuing symptoms felt after the short-course of antibiotics are something called “Post Lyme Disease Syndrome.” To me, this special syndrome is really just another name for the it’s-all-in-your-head syndrome.

Because of the price of IV medications, the price of paying a Lyme Literate doctor who would not take my insurance for fear of flying above the radar, the distance I’d have to go to find a doctor brave enough to treat my disease properly, and my weariness of dealing with this disease for four years, I am just about ready to start self-medicating. I have not come up with a whole regimen yet, but I think one component will be 400mg to 600mg of Doxycycline five days per week. I’ve been reading the copious and often-updated notes of a decent Lyme doctor, and I’ll follow his protocol as much as I can without actually being a doctor.

I’ve put together a list of the symptoms that I experience, and which I used to diagnose myself:

Erythema Migrans rash at site of tick bite
Mild headache most of the time
Pressure in face, behind nose and eyes
Brain fog, inability to concentrate
Light sensitivity
Sound sensitivity
Plugged ears
One small white matter lesion in brain (MRI)
Double vision, blurry vision, outward drifting left eye
Minor bell’s palsy-like sensations on left side of face
Decreased ability to whistle
Destruction of my thyroid gland, Hashimoto’s syndrome
Increased urination at times
A few episodes of uncontrollable chills/shaking
Air hunger/shortness of breath at times
Change in sleep pattern
Occasional pounding heart
Mood swings, irritability, depression
Sometimes it’s hard to think of words
Panic attacks
Worry about losing my mind
Some speech difficulty
Frequent swollen glands
Low body temperature
Weird whole-body vibrations, especially upon waking
Frequent muscle twitching throughout entire body
Tingling of tip of nose and tongue
Upper back and shoulder pain I’ve never had before
Wandering joint pain every day
Wandering muscle pain every day
Carpal tunnel syndrome
Cold feet
Numb hands
Extreme and chronic fatigue
Heavy, tired, weak hands
Heavy, tired, weak arms
Heavy, tired, weak legs
Heavy, tired, weak feet