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Old 12-29-2006, 04:35 PM   #1
CrazyTom CrazyTom is offline
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Join Date: Dec 2006
Location: NY
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Lyme relapse questions

Hi All

Thanks in advance for any thoughts you might have and thanks for bearing with this "brief" history.

I got Lyme Disease in 1999 (then a 35 yr old male) but didn't know it of course. Typical initial symptoms which meant nothing to me (flu & cracking neck). As things got worse my main Lyme Disease symptoms were neurological and cardiac in nature. Symptoms kept getting worse, went to a GP. First possible dx was ALS. Very worried. Sent to Neuro to rule out ALS. Not likely ALS & not MS, possible Fibromyalgia, Chronic Fatigue Syndrome along with some minor Peripheral Neuropathy. After several visits to this neurologist I got the definite impression that the only thing that would happen is treatment of symptoms and no way of getting at or knowing the root cause since all test results were negative. So it was off to another Dr.

By now feeling quite bad, neuro and cardiac symptoms very prominant. Referred to a cardiologist and a different neurologist. 24 hour heart monitor test results looked almost like one solid 8 hour block of "incidents" while sleeping. Given heart meds on the spot. By now I had stopped trusting the Dr's 100% and started researching on my own. I mentioned Lyme to Cardiologist and he said they don't have it where he was from originally (Texas). 2 minutes on Google proved him wrong. He's either uninformed, a BS'er or both which didn't exactly impress me. I wasn't about to have a go with the heart meds with all the possible side effects so I decided not to take them. I suspected Lyme but first Lyme test (ELISA) at first neuro was negative. New GP was more open to Lyme as possible dx. Sent to new neuro. I was prepared this time. History and symptoms all on 2+ single spaced printed pages. Neuro's assistant said, "Impressive", but did read it. Neuro "doesn't believe in Chronic Lyme diagnosis" (that's a direct quote). Hypochondriasis was his dx. I was just happy to get a dx, none of this just treating the symptoms garbage anymore... little did I know. He left it to my GP to explain what exactly hypochondriasis is. I just about blew a gasket right in the Dr's office. She agreed that I should have the newer Lyme tests done but all LLMD's I knew about then were out of my area, so she couldn't refer me and my insurance wouldn't have covered it anyway.

So I decided to "anty up" and took my chance with a full work up done by an LLMD in Hyde Park, NY. My nearly $2K "ticket" was a winner - 2.5 years of no diagnosis was over. Lyme Disease by both IGenex and CDC standards. HGE positive, HME and Babesia negative. By some incredible coincidence I called and found out my tests results right around 9:03am on Sept 11, 2001 which makes that day exceptionally memorable for me to say the least. I thought it was good news that I now knew what I had and I felt that I could now, finally, be on my way to getting better. The LLMD was accomodating of the long distance I was from him and he and my local GP worked well together for me. Long story short, I felt like it had been beaten after nearly 2.5 years of various antibiotic regimens.

I felt fine with no cardiac symptoms and only the occasional muscle twitch or early awakening for the next couple of years or so; generally just chalking them up to: it happens. Then a few months ago (Sept.) I started getting some symptoms back with new ones I hadn't experienced before. I was thinking it might be Lyme again but wasn't sure because I was having these new symptoms that I didn't remember having the first time around. I went back to my local GP who is now quite Lyme Literate. Starts me on Doxy (really seemed to help the most the first time) & Zithromax with the IGenex tests to be done the next week. IGenex comes back negative. IgM Western Blot bands 28, 30, 34, 66 are + while 31, 39, 83-93 are IND. IgG Western Blot band 41 is + while 23-25, 31, 39 are IND.

So finally the questions.

Is it unusual to have a Lyme relapse after feeling fine for 2+ years?

If a relapse occurs is it normal to have different symptoms during the relapse?

My first IGenex test results had 6 +'s and was positive for Lyme. This one has a lot of IND's and is negative for Lyme. Is having that many IND's typical of a relapse?

Thanks again.