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Re: seeking rhumatologists..

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i am hoping someone here can help me find a rhumatologists........

i live in staten island and am in deperate need of relief.......the pain has

gotten out of controll...i am currently on celebrex and it is NOT helping in

the least.also just wondering if anyone has developed carpel tunnel from

having lyme disease.

and has had any kind of arthritis suregery with relieving results??????

please any help will be greatlt appreciated...............

thank you for your time.

sue...advocate for lyme

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I saw a great rheumatologist, very smart but VERY busy. She's in

Wayne, NJ off Rt 23. She decided to order my western blot test after

I hadn't had one for approx 8 months, she wanted to see what was up,

I was shocked she even mentioned it as everyone else doesn't seem to

care I " had " lyme and was treated.

dunno.

it's a drive for you, but she is very good.

michelle

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In a message dated 4/10/2001 6:39:06 PM Eastern Daylight Time, pttllc@... writes:

I saw a great rheumatologist, very smart but VERY busy. She's in Wayne, NJ off Rt 23.

Hi ,

Rt 23 in Wayne, NJ is very near where I live, so if anyone out there is in that area, please look me up & we can have lunch & chat face to face. Would love to meet some of you.

Hugs,

a Aida (near Wayne, NJ in Caldwell, NJ)

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Hi Sue,

I have carpal tunnel in both hands, dx'd by nerve studies (EMG) I have

been to the orthopedic doctor who injected both my hands with steroids (I

forget the right word for this!) but I had no relief from his injections, he

wanted to operate, but I had heard of a doctor with LD, who had several

procedures done on his Carpal tunnel, got no relief, and finally realized it

was Lyme disease and was diagnosed soon after, so I decided I would be

wasting my time and insurance money. I do not know of a Rheumatologist in

NY state who treats LD, but I think you should consider a Pain doctor. I

have Aetna USHC, we are given a booklet of doctors and specialists in our

area, and I found my doctor there. I was surprised how much he knew about

Lyme disease, and he is very sympathetic to my problems, he has helped me

immensely. If your insurance will cover a Pain doctor (mine is board

certified) please consider seeing one for your pain. As for your question

about surgery helping to relieve Lyme disease pain, I really don't know if

it would be worth your while. I find that most of my symptoms come and go,

for months I have terrible sciatica pain, then it mysteriously disappears,

only to be replaced with neck pain for another month or so and on and on. I

do have 3 herniated discs in the cervical area but I would not consider

surgery unless I was incapacitated. Good luck,

Marta

-----Original Message-----

From: despratmom@... <despratmom@...>

>i am hoping someone here can help me find a rhumatologists........

>i live in staten island and am in deperate need of relief.......the pain

has

>gotten out of controll...i am currently on celebrex and it is NOT helping

in

>the least.also just wondering if anyone has developed carpel tunnel from

>having lyme disease.

>and has had any kind of arthritis suregery with relieving results??????

>please any help will be greatlt appreciated...............

>thank you for your time.

>

>sue...advocate for lyme

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Dear Sue,

I developed acute carpal tunnel syndrome from swelling of my wrists/hands

just prior

to diagnosis of LD. My internist ordered all sorts of blood tests (including the

ELISA

and Western Blot) and gave me a 1 week pack of steroids (I know, don't take

steroids

with Lyme). But I hadn't been diagnosed yet and the steroids took away the pain.

The

ELISA was positive 3 days later and I started my journey with AB's. I wear wrist

splints

to bed to keep my hands from falling asleep but I've been lucky to not have that

terrible pain again (I've never had joint swelling again). If your wrists are

swollen,

then you might get relief with antibiotics and sleeping with splints and taking

pain

meds until the condition gets under control. I know everybody's case is

different but

this is what worked for me. I'm concerned about surgical correction of Lyme

induced

carpal tunnel syndrome because what's to keep it from coming back? Good luck.

Eileen, NJ

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sue, I know

a great rheumatologist. I saw her twice and she diagnosed me with fibro, I know

another lymie who sees her and is happy with her. She is not a lyme literate doctor though. But she is

understanding and kind and thorough. And if you have arthritis, she is the

person to see. So long as you keep

seeing you LLMD. Yes, sue, I was

just diagnosed with carpel tunnel, by my neurologist, she did an upper emg and I

have to wear a brace at night. My neuro

is also not an LLMD, but she is open minded. In the world of misinformation about this disease the best

we can do sometimes is to find an open minded specialist who will listen and

who is open to working with lyme patients and if enough of us show up with the same

symptoms, they will begin to see a pattern, this is happening with my neuro, who

is noticing the same problems in all her patients with lyme. I will email you the name of the rheumo

roe

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lyme gave me carpel tunnel...arthritis in the hands and big swooleen

arthritic knees.

i won't get surgery....if the spirocchetes go away , i imagine these symptoms

will improve....

cherlyme

In a message dated 4/10/01 3:20:37 PM, despratmom@... writes:

<< i am hoping someone here can help me find a rhumatologists........

i live in staten island and am in deperate need of relief.......the pain has

gotten out of controll...i am currently on celebrex and it is NOT helping in

the least.also just wondering if anyone has developed carpel tunnel from

having lyme disease.

and has had any kind of arthritis suregery with relieving results??????

please any help will be greatlt appreciated...............

thank you for your time.

sue...advocate for lyme

>>

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I also had trouble with carpel tunnel. When I was on IV antibiotics it was real bad, I had to wear braces on both of my hands. If I didnt, I would wake up all night with either numbness or pain. And then it just stopped after about 1 month. I sure hope that it doesnt happen again. Take care, Kim S.

InfoNymfo@... wrote:

lyme gave me carpel tunnel...arthritis in the hands and big swooleen arthritic knees.i won't get surgery....if the spirocchetes go away , i imagine these symptoms will improve....cherlyme

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