posted
Hi all! Newbie here. I have read a lot of great information out on the internet about Lyme disease and have a typical case.
My biggest problem is that I live in Hawaii and all the doctors here say there have never been any cases of Lyme disease in Hawaii...so no one will run the tests. After reading many Lyme disease stories, it sounds like this is the status quo.
I had a strange bite on my buttocks back in June 2006. It never turned into the bullseye rash, but becamse dark and raised. Then about 5 weeks later I started getting pains in my hands and feet. The pain gradually migrated to my calves, thighs, forearms, and now my shoulders and back.
I've seen 2 internal medicine doctors, 1 dermatologist, 2 rheumatologists...and they all say, "Hmmmm, sounds like Lyme disease but we don't have that out here." So they run everything else but the lyme titer. Lupus and RA have been ruled out. Rheumatologist is learning toward fibromyalgia. He has me on 100mg of gabapentin which masks the real pain.
I was fortunate enough to find an allergist who listened to me and finally ran the lyme titer. Even he said it was going to come back negative. BUT, it came back positive!! I know that these tests are basically worthless, but at least they're now looking into it. The Dept of Health contacted me since it is a reportable disease. Of course he's saying it can't be and the Wester blot will prove it.
Anyway, I wanted to give a little background. Seems like a pretty typical Lyme story and runaround.
Allergist prescribed 100mg of doxicycline (1 pill per day). When I read all the other articles from LLMDs it appears that a higher dosage is required to kill off this bacteria. More like 300-600mg per day.
One doctor even placed me on Prednisone...which I now found out is the worst thing to give someone with lyme disease.
So, you can see that I am very afraid of the doctors out here. They don't know how to detect or treat Lyme and I'm afraid my case is or will become chronic.
Anyone know of a great LLMD in Hawaii or West Coast?
Thank you very much!!!!!
Posts: 13 | From Hawaii | Registered: Dec 2006
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bettyg
Unregistered
posted
welcome doug!
please EDIT MY PROFILE to allow private messages, pms, and also change it to allow searching for ANY DATE vs. default ok!
after you do this, please send me a pm, 2 people standing together icon, and ask me to send you my 21 pages of newbie links/advise.
i send them by pm vs. taking up so much room on the board, but couldn't do yours.
great history writeup!
NONE IN HAWAII; there is 1 other hawaii member here, but i can't remember her name; hopefully, when she stops next time, she'll come to seeking dr. and see your post; not daily poster.
where in calif. do you want to go? 30-40 in calif!
so list the largest cities you'd like to go to in your post here, and we'll check our complete llmd lists for you ok!
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Hi all! Thank you very much for all the information about LLMDs and sharing your stories. It's a truly amazing community of compassionate people.
BTW...I'm from the island of Oahu. It's really beautiful right now...about 80 degrees, clear skies and sunny. Actually since this is year round, wouldn't mind a change of scenery. Like some snow skiing. (Well, once I get better!)
Thanks again to everyone!!
Posts: 13 | From Hawaii | Registered: Dec 2006
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posted
I PMed you. No one on Hawaii There is no Lyme here, that is why my CA LLMD has 9 patients from Hawaii and I know 2 other people from Oahu who see another LLMD in CA.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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bettyg
Unregistered
posted
lucy, i'm so glad you showed up! i couldn't remember your name for doug to get in contact with you! so glad you read his post!
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There is no Lyme here, that is why my CA LLMD has 9 patients from Hawaii and I know 2 other people from Oahu who see another LLMD in CA.
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