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What were your lyme symptoms?

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Unread 11-07-2011, 09:20 PM   #1
Join Date: Nov 2011
Posts: 560
Default What were your lyme symptoms?

I am currently a mystery diagnosis, but getting worked up for many things including lyme.. I was curious for those of you that have had a confirmed diagnosis (or treatment with nonconfirmed diagnosis, but got better with the lyme treatments) what yalls symptoms were.
I have GI issues, muscle twitching, peripheral neuropathy (EMG showed sensory and motor nerves of a 90 year old as per the neurologist - and i'm 31). slurred speech at times, numbness tingling "dead leg and arm " sensation that i feel in the day uncomfortably and wakes me up ALL NIGHT, swallowing feels odd, and weakness muscles and joints.. I have back and neck pain that is new for me that is pretty intense, and joints ache which is also new
i Have had many tick bites (last one probably 2 years ago) lived in the northeast and hiked there for several years (about 7 years ago now). I also had a blood tranfusion for a procedure complication before these symptoms started (could i have gotten lyme from that?) My dr's ordered western blot and should have results this week.. i'm nervous its goign to be negative, which will mean we still have no explanation.. but i was curious if these symptoms sound typical of lyme.. if i need to dig deeper with other testing if the western blot comes back negative.. thanks for any help!
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Unread 06-24-2012, 01:49 AM   #2
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Join Date: Apr 2012
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idk,,i have been sick for almost a year. started with pain in ankle then both then wrist then by last fall full body pain and bed ridden. couldn't file my fingernails of hold a fork.
was told it was fibro.. tried fibro drugs for 5 months and demanded doxy..

seeing a llmd this week.
heard to take flagal sp? with the doxy to break open the cysts that the little buggers hide in when they suspect the antibiotic..
learng so much

see the movie Under my skin.. search it on hulu by PBS..
lots of dr.'s and now on doxy.

am i considered a late stage.?
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Unread 06-24-2012, 01:50 AM   #3
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oh yea 2 lyme tests came back negative.. one in november and one in may... i swear i have lyme. i hike fish garden and live in VT!

heard someone had 6 tests till one said positive
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Unread 06-25-2012, 07:46 AM   #4
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My symptoms began as pain in the left arm (elbow down to hand, wrist, and fingers) then shortly included left leg (knee down to foot, ankle, and toes) then included the same symptoms on the right side, though the left remained more severe. I had both nerve and joint pain, with jolts and numbness going down arms and legs out various fingers or toes. It was such that at times I was walking like a robot, unable to to bend my legs or arms since it led to an increase in pain when I did so.

As time passed I also started getting facial pain, increased melancholia levels, bouts of dizziness and spaciness, and clouded thinking. Finally, I started experience waves of weakness and rapid fatiguing.

It took me two years to be officially diagnosed. Research showed that Lyme tests at most places have a very high false negative result. There were two places I was told that yield more reliable results. I can't remember both, but one of then was Stonybrook. I think the other was in California, but I'm not sure.

I did several high antibiotic regimens, as well as supplements such as Samento and Banderol, a special diet with a variety of supplements and antimicrobials, among other things. All helped quite a bit at first, but over time staying on one too long plateaued or stopped working and symptoms started returning.

I currently still have joint pain and some nerve pain, but am much more functional than I was 16 months ago when I finally was diagnosed and began treatment. I need to change treatments again soon though since the numbness is returning with a moderate increase in pain.

Hopefully some of this information proves useful to you. And if you would like any additional details on anything, let me know and I will try my best.
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Unread 08-23-2012, 12:43 AM   #5
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i am still waiting on my tests. i have tried some aBX and felt much better..so need to find out if it is Barts and treat accordingly. just not sure if i should be taking a vacation from ABX while i waite for tests
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