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First post - my Lyme disease story

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Old 05-29-2012, 07:24 PM   #1
Join Date: May 2012
Location: laytonsville, Maryland, USA
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Post First post - my Lyme disease story

Moved back to Maryland in 2006. My home is deep in the woods of north Montgomery County. I work inside in a build with no windows, I live for spending time outside doing yard work and exploring the woods. Contracted Lyme in 2008 with the classic "bulls eye" on the side of my neck. Saw the Dr the next day and treated for 10-14 (can't remember) of anti-bionics. Didn't notice any symptoms until spring 2009 when I started losing my balance. Things progressively worsened starting with "foot dropping", occasional bouts of sever fatigue, joint pain (especially in my ankles). July 2011 seemed to be the worst of it and symptoms have stabled off and perhaps improved slightly. The daily struggle is joint pain caused by inactivity (I have a desk job and now three times a day I walk approx half mile, climbing stairwells 3-4 flights trying to work an additional flight every month) That gets me through the work day. My commute is about an hour. I'm so stiff at the end, I know people watching me walk into work (it's at least 300-400 yards) think I'm drunk. It takes at least 50 yards for me to "stabilize" Medical tests: 2x MRI brain, neck and spine. 2x spinal tap, PET scan, genetic level blood work, multiple neurological exams by three neurologists (all Johns Hopkins Baltimore). Last consult with my Johns Hopkins neurologists basically ended with "you need more tests..." I'm done with tests, went back to my family doctor and was denied "long term anti-bionics" and prescribed NABUMETONE. I started on 16 May.

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Old 05-31-2012, 05:50 AM   #2
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Re: First post - my Lyme disease story

Hi Loon, it is such a frustration trying to deal with finding doctors and help when dealing with lyme.

There are 2 threads that may help you in a better direction instead of going to run of the mill g.p's. When we are dealing with lyme or any of the co-infections. We need to see a doc that is a specialist in these diseases.
Read over Lyme Newbies, and How to share Lyme Doctors names.

It is very important that you get to one as soon as you can. They are costly. But your health is very important. As you have found out, a 10 or so course of antibiotics is "not" the way to treat lyme.
The longer you go, the more it invades the body and becomes chronic.

I hope you feel better soon.


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