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Mary L's Story

I hiked and camped often when in my early 20's - Long Island, Martha's Vineyard, Fire Island, upstate NY. Took pills for a strange rash which went away. After that I had fleeting symptoms which I learned to ignore. After graduating college the troubles were more pressing - first "mono", then eye infections, heart palpitations, and nagging anxiety slowly turned into panic. I was working, getting promoted. Finally succumbing to agoraphobia made me housebound for 6 months during which I developed duodenitis, then colitis.

Everything pointed to stress or depression but treatments for these backfired. I noticed that my anxiety improved every time I developed an upper respiratory infection, but that made no sense, who would believe it? I battled the panic attacks and was finally able to return to work, but never forgot the day when I was lost in my own neighborhood, that was scary.

Now I developed allergies, chronic uri's, migraines. We joked at work about my "Alzheimer's " getting worse with every promotion. Not that Alzheimer's is funny, just the idea that I would have it. Developing weak muscles in one eye, I reported for eye therapy, did exercises, and kept going. Also had to have my wrist checked for carpal tunnel, funny how it moved from wrist to wrist - and how my knee only bothered me once in awhile.

After all I was now 39, that rash was 18 years ago, and I was enjoying a successful career. Sure, I had my share of maladies, but they seemed to happen one thing at a time and they always went away. My chronic respiratory infections had finally stopped about a year prior - and so did the antibiotics used to treat them. But something new and more insidious was going wrong now. I couldn't get organized, I was bringing increasing amounts of work home because it took me longer to get it done.

I had trouble making decisions, finding words, expressing myself. And I was losing the feeling in one arm. Finally one night I lost feeling in my leg as well, and sat on my balcony until the sun came up, terrified. Maybe if I ignored it, this would go away just like everything else. And it did, until 2 weeks later while watching TV. My enire left side suddenly went numb, and I ended up in the hospital for a week where they found - nothing. I was pretty used to that, but it was getting worse instead of going away this time.

Within 4 weeks I couldn't be left alone between the balance problems, strange images, crying spells, fast spreading sensory/motor problems and blurred vision. I couldn't tell my right from my left, called items by the wrong names. I had seen 6 doctors, had 4 Lyme tests which were all negative. But I continued to pursue this possibility because my sister said that there was something about the way my symptoms came on and off like a switch that reminded her of when her son had Lyme disease.

He had been hospitalized with it 10 years prior, a severe case which started as an alleged "emotional problem" and ended up as a serious case of encephalitis. When my 5th test was positive I thought salvation was just a few weeks away- not the beginning of another nightmare. Hey, I would be treated and get on with my career, right? Twice I tried to return to work, twice I slid backwards rapidly after treatment. I've been battling chronic neurological Lyme disease ever since, along with chronic, obstinate denial that there is such an ailment.

Despite regular treatment motor problems have progressed, most recently including what look to be seizures. Blood flow in my parietal lobes is particularly impaired, and other areas of my brain as well. My formerly negative EMG's are now positive. Sometimes I need a cane to walk. But antibiotic treatment makes a big difference: controls the seizures, allows me to walk and think more clearly. I've lost my career, I'm very afraid for the future, and pray for a cure.

Don't tell me that there is no such thing as chronic Lyme disease, don't tell me it can't go dormant and come back later. Don't suggest this is "something else" because I've been tested for it all - repeatedly. An infected tick bite is like a "ticking time bomb" that can be set off at any time. I used to get mad if a doctor told me this was all in my head but not anymore - because among other places, that's exactly where you'll find the infection.


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