posted
Hi. I've been on lymenet for several years because my partner has Lyme here in Mass. But this post is for a very dear friend of advancing age just diagnosed with ALS. History of tick bite (brief attachment). Hoping to convince her to rule out Lyme before accepting an ALS diagnosis. She has been run through the medical mill of late (with speech slurring) so I am hoping to make this as simple for her as possible.
So - kindly competent docs in western PA with ALS experience?
Thank you.
Posts: 204 | From ma | Registered: May 2007
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bettyg
Unregistered
posted
in case you don't get any answers due to ALS knowledgeable too, here's my suggestion!
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
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posted
There is a great LLMD an 1:15 minutes south of Erie. I know of atleast six others from Erie that use this same Dr. I also live in Erie (Harborcreek). You can contact me on my cell 460-6327 for the dr. name. I'm available any time between 8 am to 8 pm M-F.
Posts: 7 | From Erie, Pa | Registered: Apr 2008
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quote:Originally posted by bystander: Hoping to convince her to rule out Lyme before accepting an ALS diagnosis.
Bystander, this is a really sensitive subject for me. My absolute favorite uncle (same birthday as mine - today 4/30) was dx with ALS. He's since passed, but I've wondered over and over for the last several years if he really had Lyme like me but was never dx for it... and if he'd still be alive today if he had been tested and/or treated.
The only difference I can remember is that he's had a "bells-palsy"-ish droop to one side of his face ever since ever, and I don't have that (yet) but everything else - very similiar!
I really hope your friend will try to find out before accepting that dx. Perhaps she can see one of the dr's close to her in PA to get some testing?
(((hugs to her - and to you for being such a great friend)))
Roxy
Posts: 31 | From PA | Registered: Apr 2008
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