Thread: Lyme Update
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Old 07-14-2009, 08:53 PM
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
Member
LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
Default Lyme Update

While I don't read or post that often anymore, I still maintain an interest in the group, and maintain the Lizajane.org lab sheets, which are getting about 15 downloads a day--not bad!

So here's the update. I've been on antibiotics since February for lyme. I began feelnig much better in April and since April I have felt more well than I have felt in a decade. It's quite a marvel.

First I was on doxycycline, but as the sun came out and I began to react we switched high dose Amoxicillin---1Gm three times a day. I continue to do well on this, and will be on it until September, when I will be started on pulsed dose Flagyl, to hit the cyst form of the bacteria.

I believe my neuropathy symptoms are improving slowly over time. I can't say for sure, but they are definitely not worse. I am able to walk longer distances, and when I stop, it is NEVER because my feet are hurting. There are occasions when I get diffuse small fiber symptoms--like a prickly itch all over my skin, but these seem to go away quickly.

I continue to urge people with idiopathic axonal or small fiber disease to get tested for lyme at one of the labs approved by ilads, the lyme advocacy group of doctors. I still urge people to NOT trust routine testing.

There is a new documentary out about the underdiagnosis of lyme. It's called Under Our Skin, and can be bought for a donation from its website. There's been some publicity on this on TV, and I can't recommend this movie highly enough.

3 1/2 months of feeling relatively well. That's more than I've had in the last 15 years.

Good luck to all....
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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