posted
I have neuro Lyme with MS symptoms (and brain lesions). Before I go on the big, bad, scary hunt for a new doc, should I be looking for someone who has treated a lot of neuro Lyme or would the treatment plan be the same? I'm not asking for a name (although emails are welcome). Just looking for a starting point.
I had a terrible experience with treatment, if you can call it that, by a Southern LLMD, so I am very afraid of everything now. And I think I am running out of time. I am 38, and I was probably infected as a child. My story is so similar to many of you.
I'm not able to stay online for long because I don't do that well with sitting up, so I may disappear soon. I don't know if I should include more details or "keep it short, stupid." Just tell me what to do. I'm a kty who can be taught new tricks.
Thanks bunches! 3ktykatz
-------------------- 3ktykatz + 1 new kitten Posts: 24 | From Alabama | Registered: Jul 2006
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bettyg
Unregistered
posted
ok, what is "kty" ... too many abbreviations in this lyme world we live in...
I just sent you a pm with some newbie sites to visit.
There are many on here with MS/lyme and hopefully, they will venture by when they normally come in here.
If you do a search, found at top below POST NEW TOPIC,
type in MS and lyme in MEDICAL topic only any date providing your MY PROFILE was changed to any date vs. 30-60 normal days! leave membership blank and hit enter
Should bring up quite a few posts about these 2 illnesses together. Some might mention a neurologist and state. We do NOT list MDs last names on the board. Glad to have you aboard.
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posted
Thanks so much, BettyG. Right now I'm just trying to figure out how to "work" this board. With all my vision and cognitive problems, I'm not the sharpest tool in the shed.
Ktykatz is kitty cats. Obviously, I have three of the adorable fur children - two boys and a girl. They keep me going.
Thanks for the hints about searching. I knew about not posting doc names. I was just wondering about, I guess, if the treatment was different enough that it mattered. Gosh, I don't think that even makes sense. Sometimes I confuse myself. *sigh*
I'm so afraid of going through another doctor horror that I'm am taking baby steps in even looking. The way I am right now, I MUST take big girl steps. Just trying to get the energy and focus and courage to try again.
Kitty kisses, 3ktykatz
-------------------- 3ktykatz + 1 new kitten Posts: 24 | From Alabama | Registered: Jul 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ideally, you would probably want a doctor who has treated people with similar symptoms to you. But, as you know, we are limited in the world of doctors who really understand Lyme and Lyme treatment. Most LLMDs will have treated people with neuro Lyme.
If you want somebody to help with the MS type symptoms while the Lyme is being treated, you may want to find a Lyme-friendly neurologist to work with separate from Lyme treatment.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I didn't think about that! That will probably be my best way to go. Hmm. You cleared some of my brain fog.
Thanks bunches, 3ktykatz
-------------------- 3ktykatz + 1 new kitten Posts: 24 | From Alabama | Registered: Jul 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
A good llmd, all lyme is neuro because it is a disease of the central nervious system.
My symptoms were mostly neuro and I have been successfully treated for 3 years. Now the neuro is long gone and arthritis keeps trying to return. It's a never ending battle!
Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
{{{{Kty}}}}is that you???????
I've been wondering how you were doing since we both left the NM board.
I now see a doc in Lufkin, since there's no one in Houston any more. Others have been saying good things about a doc in LA, though I don't know his name or location. Someone will come by with that info for you, I'm sure.
Kty, we keep my lyme under control with minocycline and zithromax, plus intermittent flagyl to bust the lyme cysts. Liver protection is essential - milk thistle. I also had to go on thyroid meds as a result of lyme.
All of that allows me to function, which I believe is what you're after at this point.
posted
SUE!!! OMGosh, if I had a tail I'd wag it. Wait, I'll flip my kty tail around a bit. *swish, swish*
I've been mostly offline since I got off the NM board. It really sucks when you're too sick to do the research that you need to do in order to not be sick. I know I have to do something, but things have been really hard since my grandma died.
I'm just checking on here for a couple of minutes, but I will IM you very soon. I've missed you! I didn't realize how lonely I've been until I posted here. I wish I could be online more. I just physically can't do it anymore.
I know the info I get here will help me. I'm going to get better!!!
Love you ALWAYS, 3ktykatz
P.S. I had to add the "3" because I adopted a two pound starving orphan kitty that showed up in my back yard. He's now weighs - hold on to your hat - 28 pounds and is spoiled rotten.
-------------------- 3ktykatz + 1 new kitten Posts: 24 | From Alabama | Registered: Jul 2006
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Just tell me what to do. I'm a kty who can be taught new tricks.
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