MY FIRST DIAGNOSED CASE
It's possible that I'd had Lyme for years before that first diagnosis in 1988. I was the head gardener at the PepsiCo World Headquarters in Purchase, NY. It was a huge and fiercely stressful job. I still clearly remember standing in the cafeteria that day absolutely unable to eat a thing because I was suddenly so incredibly ILL. I went to a friend's house just to lie down, and called the chiropractor/kinesiologist I was working with at the time. When I described how strangely and suddenly SICK I was feeling, she noted that she'd seen two or three other folks very recently with the same symptoms and they all had Lyme.
I called the clinic that my Health Insurance sent us to. I remember the PA listening to my symptoms and 'pronouncing' that I must have Chlamydia. I had to PUSH to get her to take a Lyme test by PUSHING the notion that hello, I'm a GARDENER. Reluctantly, she did and sure enough, it came back positive. Because I always bruise from having blood taken, I was showing my lovely bruise to someone, and I noticed a PERFECT RING on the inside of my other elbow. MOST unfortunately, the Treatment du Jour was only TWO WEEKS of Doxycycline. Oh, that's just enough to make those spirochetes mad. I was told to take aspirin if my joint pains remained bad.
My Rx ran out on a Friday and I couldn't speak to anyone until the following Monday and by then I had CRASHED. Already I had lost some of the feeling in my fingertips, but the doc assumed it was from the aspirin (?). I was put on another two weeks of Doxy and then pretty much pronounced 'cured'. Problem was, I still felt horrible. But I bought into it. I'd taken my medicine, so it must be gone. The deep depression, the body pain, the inability to handle stress at all -- must just be me. Must just be job stress. I cut my hours back. It didn't help. Finally I quit altogether. That didn't help either.
From then until I wound up in the emergency room in 1994 spanned six cases of this vile disease. The reason I clearly say six, is that each time, I got two blood test results back. One perpetually saying I'd HAD it, and the other 'indicative of a new infection within the past six weeks'. The early cases all ooze into each other, because I never FULLY recovered before I was nailed again. Only half of them ever showed a ring or rash. In major desperation, I think it was the fourth round that sent me to the Westchester Medical Center, reputed to be Lyme Central. THIS is where I met the most resistance to my having it at all. THIS blood test came back negative and THIS doctor looked at the NUMBERS, (not at my miserable self) and said "You've never had it at all". Yeah, right, and you've got SOMEBODY ELSE'S BLOOD TEST, Pal!....If I'd NEVER had the perfect ring rash and previous POSITIVE test results, I might have bought into this chapter too. So I was sent for every test in the book. We ruled out lupus, we ruled out arthritis. In order to RULE OUT Multiple Sclerosis, I was sent for an MRI (remind me NEVER to subject myself to that EVER again - if anyone wants to see inside MY head, they can drill a hole) Aside from the claustrophobia (this was one o' them 'olde fashioned' ones, where they slide you into a drawer) which became TERRIFYINGLY evident when the entire left side of my body began to tingle and I SAID so.....and my voice bounced back from a surface mere INCHES from my face.....no, the WORST part was when it was over. I just SAT. Every 'circuit' in my body was fried. The nurse cheerily said "Take it easy driving home!" while I was wondering how I was ever going to make it across the floor to the doorway.
I crawled into my boyfriend's van, curled up in a ball and burst into uncontrollable tears. He drove me up to my chiro/kinesiologist's office who took one look at me and asked 'what happened'. She checked me out and said I HAD no north or south. My internal compass was spinning. Yeah, that's about what it felt like. She worked on me with HUGE magnets and I left her office feeling all back together and settled.
When I went back to that neurologist so we could see that I had NO lesions on my brain, I told him I'd had a 'bad reaction' to the MRI. He TOLD me that NOBODY has a bad reaction to an MRI. (yeah, pal, either I'm NOBODY, or you're not LISTENING!!!!!!) Months later a friend sent me an article where research was done on MANY of us who had similar reactions to having an MRI and it turns out, WE have something in our brains very similar to migrating animals. (THAT and $1.95 will get you a bagel, no cream cheese)
So, by this time, I'm beginning to feel that these doctors don't have much in the way of answers for me. They're shaking their heads and I'm feeling HORRIBLE.
My first rounds of symptoms involved mostly endless joint pains. I remember noting that it felt like I had a steel rod from shoulder to shoulder that someone was TIGHTENING. My neck hurt SO badly that merely moving in my sleep would wake me from the pain. And all I WANTED to do was to sleep. It reminded me of the endless cap naps of early pregnancy. One of the early cases came with a headache SO excruciating that I couldn't bear to even touch my temples. When I wasn't in tears, I would laugh at the image of me, the herbalist....sitting on the edge of the bed with three Advil in one hand and a cup of black coffee in the other. It was the only way I could get past the pain and get GOING.........
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