Raine's Story

I was a Navy brat who lived all over the United States. I remember being out doors a lot up north when I was a kid, and getting tick bites was very common. I don't know how long ago I was bitten originally, but the latest bites I remember were in Virginia just outside of Washington, D.C about 20 years ago. There's a possibility I was bitten again in Florida about 10 years ago, since I developed a strange case of hives on that trip, that I can add to a long list of strange fleeting ailments that have struck out of the blue, and just as unexpectedly, left.

I think that things came to a head several years ago when my cat had fleas, and returning from a trip, found the house had a flea problem. My husband, an oceanographer, was away on a trip, and I took the kids (two daughters then two and six, now 19 and 23!!) to a motel, and proceeded to do an extermination routine on my own, using malathion spray. I sprayed heavily everyday for three days, and stopped when I noticed my tongue felt a little numb (dumb!).

When my symptoms started in earnest in 1995, I blamed them on this. In retrospect, I feel that it was less likely the cause of my problems, and more likely that it served as a catalyst, and aggravated the dormant Lyme problem I already had. Before things came to a head in '95, I had odd things happen... unexplained miscarriages and troubled pregnancies, heel pain that put me on crutches for almost a year, and a TMJ problem (locking my jaw so I could only open my mouth half an inch for six months) after a having a routine filling (that had orthodontic specialists ready to break my jaw when it suddenly let up spontaneously.

I also had knee pain that made it hard to walk up and down stairs easily, eye problems in 1992 that made my vision fragment when I looked to the left (everything looked like a Mondrian painting), hearing problems that no audiologist understood, and various other odd comings and goings. NO doctor ever understood or had a clue as to what anything was. I had to endure the idea that people thought I was some kind of hypochondriac or somewhat crazy.

And the ironic thing was that I was always a healthy, outgoing, rather daring type of person, who could tolerate pain rather well. Things came to a head in 1994 when I suddenly experienced a lack of balance and double vision. I went to my family GP who diagnosed me with an inner ear infection, and when that didn't pan out, sent me for an MRI. Brain lesions were discovered and a diagnosis of MS was made.

I was sent to a neurologist who also spent less than a half hour with me, tapped me on the knee, and had me trace a path with my foot, ordered a couple of evoked potentials (that as far as I know he didn't see until a couple of weeks later), and promptly told me that I had MS (I have to add here that the southern part of the US is not considered endemic for Lyme -- ha! its everywhere). My ex-family doctor had a wife with MS, and the neurologist he sent me to turned out to be the head of the Louisiana MS society..no biased opinions here). No other diagnoses were discussed or considered.

He wanted me to start Betaseron immediately, but I balked because I never had liked medications in the past and this was something too major for me. I started a megavitamin regimen instead, and survived well enough. But even though I waited for the other MS 'shoe to drop' and feared becoming disabled, and even though my odd aches and pains (knee, stiff neck, rib pain, back pain, strange fleeting rashes,etc) continued, I just didn't follow the pattern that the doctors seemed to expect, or other MS patients seemed to follow (those MS group meetings were DEPRESSING!).

In 1997 I had a bad pap smear and a specialist found that a spiral(!!)growth of tissue was blocking them from even seeing my uterus. Other doctors called in were amazed and, again, had never seen such a thing. Thus a hysterectomy. Things continued in their own mysterious and odd way until I started having rib pain that mimicked a heart attack (no proof of that in the tests), and I started having strange electric shocks in my arm.

This was different than the L'Hermitte's syndrome I had already become used to. It would come on suddenly; my arm would start to fall asleep, and then a tingling like electricity would travel up and down my arm. My arm would go completely numb, and I had no muscle control at all. It would last for anywhere between a minute and five minutes, and then slowly subside. I had to hold completely still for fear of losing my balance. I was trapped one day at the mailbox for five minutes unable to move. Of course, as you know, you always attribute whatever happens to something else.

I had been lifting heavy suitcases on a trip a few weeks before. I thought perhaps I had strained a muscle or ligaments. It was scary and I knew I would have to go to my doctor. Then my husband heard something about Lyme imitating MS. I searched the internet and found some similar descriptions even an e-mail about the heel pain no one had ever been able to explain (Reiter's syndrome). I took my research to my Ex-family doctor, who dropped the material on the counter without looking at it, and said "you know you're problem is that you read too much!!"

Thus the computer research began. I couldn't believe at first that others were dealing with the same kind of weirdness. Lyme symptoms actually matched mine. I contacted the National Lyme Foundation and found a Lyme literate doctor 2 hours from us, in Alabama (This was all during Hurricane George last October, as if I didn't have enough on my plate). He spent an hour talking to my husband and I during the first visit, and was convinced I had Lyme.

He put me on Biaxin (1500mg a day), and by the next visit told me my Western Blot showed very suspicious Lyme activity, and that although not classically positive, strongly felt that I had never had MS unless the late chronic Lyme itself, was its cause. He strongly feels that MS and chronic fatigue are results of long untreated Lyme. The Biaxin gave me more energy which was great, and I no longer had the arm shocks; but my herxes were mild to nonexistant.

When I next saw him I mentioned that my legs were swollen in the evenings and he was afraid I was reacting to the Biaxin. He had recently heard that Flagyl was doing great things and we decided to try it. He said he had prescribed it in the past but that he had no real success with it, but he thought on reading the recent literature, that he had underprescribed the dosage in the past. The Flagyl gave me a tremendous 2 week herx right away and has left me extremely fatigued and nauseas.

On the plus side, my fingers tingle less, my knees speak to me gently, and I have no floaters. Also, the LUAT tests I took came back negative after the Biaxin and the week of half dose Flagyl, but the third LUAT, taken after the half dose Flagyl plus two weeks of 2000mg daily, yielded a POSITIVE result. Finally! So I guess that the Flagyl is doing some spirochete killing after all!

Best wishes to all, Raine

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