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Lyme Disease Message Board

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Need Help!
May 19, 2011
Hi. My name is Dan. This all started a year ago for me. In may of last year I developed a fever of around 100 degrees, complete with drenching night sweats for about 7-10 days. Then, just when I thought I was getting better, I experienced numbness in my left foot and a warm sensation up the back of my neck to the top of my head. As soon as that happened, all hell broke loose! I developed burning sensations throughout my entire body, and started to not be able to feel my arms and legs. The whole time my head had an incredibly drunk/spacey feeling, and a pressure like my brain was in a vice. Whenever I would go to a doctor they would say, "Have you been tested for lyme?" In fact, I had been tested about 8 times, all negative. I deteriorated to the point that I was hospitalized in the summer of last year. My heart rate and blood pressure were significantly elevated, completely dry mouth, the constant feeling of water splashing on my body, and all the same old arm, leg, and head symptoms. I was given a full neurological and endocrine work up in the hospital. They found nothing and released me. When my dog and my brother were both diagnosed with lyme through routine standard labs in the following months, I knew it couldn't be coincidence. I then visited my first LLMD who tested me using the Igenex lab. It came back positive for lyme and bartonella. I was put on Bactrim & Ceftin for 3 months, but did not improve. Every other doctor I saw tried to convince me that that wasn't a reliable test, and I didn't have lyme. I then saw a second LLMD, who agreed that the Igenex test was not reliable and performed PCR testing on me. This time it came back positive for Babesia and Anaplasmosis. I couldn't believe it. The only 2 that came back negative from Igenex! I was put on Mepron and Zithromax for a month, then re-tested and told I didn't need any more. The problem is I really don't feel any better. My brain still feels like it is in a vice. My neck is still stiff and warm. My legs feel like the tissue at the very center of them is dying. My mouth and eyes are completely devoid of any moisture. I feel like I've just drank a bottle of vodka at all times. I've got all these shooting burning/tingling/nerve-y type sensations throughout my entire body. Also, this is going to sound strange, but I know it's related, because this never happened before...I can't stop dreaming about sweets. It was every night for a while...I'd be in an exotic ice cream shop, or trying to pick out candy in a supermarket. Always either candy or ice cream. I don't know if I'm unconsciously craving sweets, but this never happened before, and it happens all the time now. Anyway, I don't know what to do now. I was told the PCR testing was extremely reliable, but I don't feel any better. I've always thought bartonella fit my symptoms better though, as I've had a lot of muscular pain (particularly thighs and upper arms), but never really joint pain. I've been practically bedridden for months now, and to say I'm at my wit's end would be an understatement of outrageous proportions! I was wondering if anyone here has had any experiences with Igenex vs. PCR testing, or any other tests that may be out there. At this point I don't know if I should go back to the Bactrim & Ceftin that didn't do anything, or perhaps seek out a 3rd LLMD. Any help or advice anyone may be able to offer would be sooo greatly appreciated. Thanks so much guys, and hang in there!

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