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Amy B's Story

Well, if you are on this page chances are either you have Lyme disease, think you may have contacted the disease or know someone who has it. Here's to praying that some day there is a cure found.

My Story started back in July 1985 although I would have never guessed this to be true. I was bitten by a tick in Bradford Maine(of course we don't have Lyme ticks in ME), at a little league ball game. Back then no one even thought about the problem of Lyme disease, so when I got home my grandfather put a hot match on my arm and removed it.....end of story so I thought. I only wish I had known then what I know today.

I never had a rash and don't recall flu like symptoms although I may have had them. As a child I always suffered from bronchial problems and phenomena several times but basically chocked it up to having a lousy immune system from Oct. thourgh March each year. I also required a lot of sleep, but figured during my teen years that it was do to the fact that most of us run until we drop.

I had a lot of female problems at a young age, and suffered from a sore tail bone and stiff neck a lot, but always blamed that on other things. I had several strep throats etc., causing me to have my tonsils out at a later age then most, but still chocked it up to my good old luck.

I hadn't felt good for a long time, but had gotten used to it, until it became totally uncontrollable in 1997. I complained of eye pain and pressure, dizziness aches and pains etc. I had already had a partial hyst at age 25, and figured that something weird was going on (so started probing my DR to see what we could do).

My eye tests came back as slightly off....nothing to be alarmed about....figured that maybe my headaches were do to a little near sightedness....rulled out glaucoma etc.....all the sudden my symptoms just seemed to disappear..

In Feb 1998, while working on a client (I am a hair stylist) I got this headache out of nowhere. It was so intense I had to have my partner finish her up so I could go lay down only to cry, vomit and think I was going to die. It was the strangest thing I had ever encountered.....just like something let go in the top of my actually felt like I had a water fountain trying to spurt out of the top or a nail being driven in my brain. I called the Dr's. office and they told me to go to the ER. I had suffered from headaches a lot, but never like this.

The ER thought that I had either had an aneurysm or spinal meningitis....ran some tests (spinal taps, x-rays etc.)and found nothing. From that day on my life has been changed forever. I was sent to a neurologist, after suffering from head pain, burning, numbness that traveled, fatigue, muscle weakness etc.

He decided to do another spinal tap, MRI, etc. and after trying me on uppers, downers, neurotin, and various meds, that I might have the early onset of MS (although he told my Dr. he thought it was all due to anxiety). Thank God she believed in me and decided to keep on searching. By April I was still going down hill fast....loosing my memory, having a hard time functioning, becoming weaker etc. So, she sent me to Boston to see a neurologist.

In May '98 I thought I had met the best Dr. in the world (he was this terrific neuro at Mass General who told me he thought all of my problems were due to Icelandic disease, possible MS or Lupas.....and totally threw out the anxiety diagnosis.

He gave me some meds....said go home and see what happens....I'll see you back in a few months. Meanwhile I grew worse.....started gaining weight.....couldn't remember what I was doing from one minute to the next, became more fatigued(the symptoms changed - sometimes changed by the minute). I couldn't even figure out my checkbook anymore....this coming from a girl who used to waitress and never forgot anything.

I became very moody, hated my life and everyone in it....almost wrecked my marriage...cried all the time and basically thought that maybe I was going crazy. Around July of '98 I went back to Boston, this time to see an MS specialist, for I was convinced that it had to be would explain balance problems, shaking, fatigue etc...only to leave there feeling like I had been kicked in the butt....

Sorry I am so tired I will have to finish this later......

Thanks Amy

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