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Lyme Community Lyme Disease Support Forums General & Support Does anyone know of a specialist in KS or MO?
 

Does anyone know of a specialist in KS or MO?


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05/02/2008 14:36
Mizuiro
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 I live within an hour drive of Kansas City and have been having a horrible time finding a specialist. My neurologist has been extremely helpful but he and my family doctor agree I really need to see a specialist. Apparently I've been having an allergic reaction to the Doxycycline. My doctors office has been looking for a specialist but they said all the ones they've talked to don't think there's Lyme in this area.

Post edited by: Mizuiro, at: 05/02/2008 17:29

Smee: I've just had an apostrophe.
Captain Hook: I think you mean an epiphany.
Smee: No... lightning has just struck my brain.
Captain Hook: Well, that must hurt.


"Hello in there Cliff. What color does the sky happen to be in your little world?"
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05/02/2008 19:50
ConnieD
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 Hi jessica,

Jaime should be along soon. she has 'the list.', and should be able to help you with that information. Try pming her. I think she checks her pm first.

connie

Please do not take anything I say as medical advice. I am not a doctor

~Lyme Disease Support Group Leader~
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05/02/2008 20:43
Mizuiro
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 Ok, I'll try that. Thank you!

Jessica

Smee: I've just had an apostrophe.
Captain Hook: I think you mean an epiphany.
Smee: No... lightning has just struck my brain.
Captain Hook: Well, that must hurt.


"Hello in there Cliff. What color does the sky happen to be in your little world?"
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05/02/2008 21:20
synergyman
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 We lived in Parkville;MO 2000-2005. I was bit by a tick in June 2001. Three days later I had the classic signs of lyme's disease (according to a list of the symptoms on the internet). I promptly took in the saved tick and the list of my symptoms to which the MD claimed there was no such thing as lyme's in the area, threw away the tick, and only put me on 2 weeks of Doxycycline. Need I say more? I started having the cascade of different body systems attacked over the next few years to which each time I suspected lyme's and was brushed off by the physicians. Finally in Feb 2007 lyme's and several co-infections were properly diagnosed by a LLMD in Minnesota Both my wife and I are still being treated but feeling better. Good luck finding a specialist!!!! We wish you well.
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05/03/2008 06:04
ConnieD
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 Your welcome, Jessica. We're all in this together.

wow, synergyman. That's just insane that the doc threw away your tick!!! You were more informed than he!

As for me, I was ignorant about TBDs. I had a tick attached to my neck in 91 or 92...can't remember, because I didn't think anything about it. I had a strange rash on my leg in 97, but it went away and again I thought nothing of it. (My symptoms began way back in 91. They were slow to get started, but nonetheless, hindsight points to lyme. My symptoms gained steam after my first child was born in 98. I finally saw some docs about my symptoms in 2004. I told all of them about 'the rash' in 97. Still, no one tested me for lyme or even mentioned tick-borne diseases. They tested me for everything else under the sun.

Lyme disease needs a reliable test and needs to be a standard rule out diagnosis. That could save lives. Also, lyme needs appropriate, effective treatment. It's so complicated. What works for one person, may not work for the next. It is so beguiling.

However, we can get better.

I wish you the best Mizuiro and synergyman and all of you fellow lymies.

Connie

Please do not take anything I say as medical advice. I am not a doctor

~Lyme Disease Support Group Leader~
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05/04/2008 04:56
tina.r
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 Have you tried the Lyme Disease Associations referral?

http://www.lymediseaseassociation.org/referral/LogIn.php? setcookie=yes

I found some local LLMD's through them
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05/04/2008 15:54
fin24
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 Hi

Ive sent you a PM with several links to very good Kansas sites esp. the support group there and their hotline phone number!!!

let me know if you need more

Fin
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05/04/2008 16:05
Mizuiro
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 I did find there's a support group around Kansas City that meets at St Jo hospital so my doctor's looking if there's some on there or on the MO side. My dad says he also works with a woman who's husband has Lyme and he's trying to find out who he sees. I will definitely let everyone know if I need more information or support though. I'm just stressed now with talk of a wheelchair and bell's palsy. In my last exam on friday my family doctor told me it's like I've just forgotten the right side of my body and it's scary. I should be a senior in high school and be worrying about prom and graduation right now.

Jessica

Post edited by: Mizuiro, at: 05/04/2008 18:07

Smee: I've just had an apostrophe.
Captain Hook: I think you mean an epiphany.
Smee: No... lightning has just struck my brain.
Captain Hook: Well, that must hurt.


"Hello in there Cliff. What color does the sky happen to be in your little world?"
Post Reply   Quote


05/04/2008 19:39
fin24
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 Oh Jess, thats so hard to take but be hopeful--Ive personally known many teens who are worse off and yet theyve recovered!!

Just make sure you do whatever you need to do to get by--If you need a wheelchair, just tell yourself "its only FOR NOW" and go forward.

If you keep saying "this is hard but I can deal with this" and you keep sharing and allowing yourself to gain support from others, you can get though this!!

Hang in and try to contact that Warriors group!! many are in a similar boat and others have gotten better!!

Fin
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05/04/2008 20:14
Mizuiro
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 Well I did manage to find a doctor. I looked at some doc referral sites I've been sent links too and found one about an hour drive away that's an ILADS member. It seems almost as though I'm meant to see this doctor since my grandmother (One I only hear from every few months) called out of the blue and gave my mom the name and number of a doctor she'd gotten from a man at her church. The doctor she told my mom about is the very same one that came up in the search. So my mom said she'd call my family doctor tomorrow for the referral and they'll make the appointment so I may be able to get in a little sooner than I would otherwise.

And I know I said it's scary and it is but I still find myself full of hope. I know I will get through this and I pray everyday for everyone else going through this and that they can learn more and prevent Lyme from spreading so much like it has been. I've read a few articles now which referred to Lyme as an unseen plague.

Jessica

Post edited by: Mizuiro, at: 05/04/2008 22:15

Smee: I've just had an apostrophe.
Captain Hook: I think you mean an epiphany.
Smee: No... lightning has just struck my brain.
Captain Hook: Well, that must hurt.


"Hello in there Cliff. What color does the sky happen to be in your little world?"
Post Reply   Quote


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