posted
I had late stage neuro lyme, disabled by it 11 years ago, 10 years-5 years ago treated with pairs of antibiotics with excellent results. Over 95% nerve damage eventually healed. NOW>>>>>>>>>>>>2 1/2 years ago neuropathy started in my upper back, spread to my thighs, torso, then to my entire skin surface. Recently, it has felt deeper, like burrowing electric worms in my back. Hands and feet are the last/least affected. I have confirmed nerve damage that wasn't there 10 years ago. I am on 2,400mg neurontin and will ask for more relief when I get my fourth neurologist (soon). I have been tested for lyme and co infections by my old lyme doc at the good labs, at least twice. I tested negative to everything, as I did 10 years ago. Lyme Doc doesn't believe it is lyme.
The progression of the damage is central to peripheral.....backwards of all neuropathies that I or my doctors know of. In fact, I think a couple of them thought I was making it up. I haven't been able to work since 2/14/08 due to side effects of medication. Disability cut me off and we have to borrow money to pay out bills.
The only tests I haven't had are lumbar puncture, mri and nerve biopsy. I will ask for the last 2 when I get a neurologist.
My diabetes doctor says it isn't from diabetes. It isn't supposed to be lyme, but.....what in the world could it be? At this point, I believe that any diagnosis is going to be emotionally devastating. Nothing but a really bad thing could do this to me.
I would like to go on antibiotics for a year as if I had lyme...and see if I stop getting worse. I honestly don't know if it could be lyme or not.
what do you think?
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
I would say if it worked in the past why not try it again? It seems to me that the neurologists haven't pidgeon-holed yet what all Lyme can or cannot do. It seems several studies show the persistence of Lyme even after supposed cure.
There's a good chance that the neurologists's treatment will entail scary immunosuppressive drugs. I'd opt for the antibiotics to rule out the Lyme first.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
A couple years ago my old lyme doc gave me a couple of weeks on one antibiotic....he won't do it again...I have asked him. What do I have to lose? I guess even he doesn't like being told/asked what to do. I suppose I could really beg him if the neuro appt turns up nothing. Lyme really is the only thing that makes sense. I mean, lyme overall makes no sense, so this makes sense it.....well you get it, right?
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
I saw the new and nice neurologist. No more neurontin than 2400mg, he says the body won't absorb it. Prescribed indocin, a drug that is so rarely used that it is taking the big savon pharmacy, here in southern california, a whole week to get some in. All it is is an anti inflammatory drug. No mri, the small fiber nerves involved won't show up. No nerve biopsy, they are too painful. It isn't lyme or an infection because my white blood cells etc count are low. I looked in my old old records and found that my infection fighting cells were just as low back then. Go figure.
I did have seven vials of blood drawn for seven tests, some of which are so obscure that the phlebotomist had to get her supervisor. On the other hand, where the needle went in, I now have a purple spot, not a bruise, but it looks like a one toothed vampire bit my arm. Never had that and I've had more vials than 7 taken in the past.
He said that I may have neuropathy because of bad luck.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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