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Old 07-04-2012, 05:12 AM   #1
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do i have to die before they figure this out? Lyme, Ms, fibro ??

Hi All,, Well where to begin, I am new to board.. so hope I will not babble on forever. OK I am 54 with all the symptoms and one time or another.. of Lyme.. and have had them from age 30. I have been tested for lyme many times.. lupus, MS, told I had FM, fibro,, and my favorite.. it was all in my head! Now my latest test show I at some point did have Lyme and rocky mountain spotted fever~ Not active mind you.. just that I had it.
My symptoms are so bad now it is hard for me to do just normal every day stuff.. like feed the dog.. it hurts ! I have weird seizures go into a shaky all over fit. Doesnt last long.. but scary. I have vision issues,, can not tolerate the heat, light bothers me. gives me eye pain. Have headaches more days than not. Tho they don't last long if it is a morning headache that is. Have insomnia,, life pretty much sucks.. my 62 year old boyfriend told me I was holding him back! How nice I cant even keep up with a 62 year old ..lol
Hmm

So from reading here I see high does of doxy are the norm.. my doc gave me one months worth of 100 mg twice a day. Will this help? He was not sure it would..

Wondering where you find lyme literate md's.. and why would so many lyme test show negative? I should have asked my doctor,, I know. Not sure what test he used either.

So guess what i would like is questions to ask doctor.. and LLMD name in arkansas.
Or for somebody to just shoot me and put me out of my misery!

 
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Old 07-04-2012, 09:44 AM   #2
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jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
Re: do i have to die before they figure this out? Lyme, Ms, fibro ??

Don't buy the "not active now" response to whether you now have lyme! Any doc, other than an LLMD, hasn't a clue! LLMD's go primarily by clinical symptoms first, tests are not that important. The symptoms you report are not inconsistent with lyme and that you've had them for so long it's imperative that You find an LLMD. Also, read the post "lyme newbies" at the top of this page. A lyme infection only gets worse without proper treatment because the spirochetes replicate about every month. Lyme Disease is serious! I hope you get the help you need.

Jen

 
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marbach52 (07-06-2012)
Old 07-06-2012, 08:58 AM   #3
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marbach52 HB User
Re: do i have to die before they figure this out? Lyme, Ms, fibro ??

I am in Massachusetts and took the lyme test many times and they all turned out negative. Finally found a Lyme doctor about an hour away in Longmeadow MA. She's an Infectious Disease doctor that treats Lyme. She has me on antibiotics for the last year. She warned me that I would feel worse, but eventually feel better. I still feel worse, but I haven't given up hope.

I can give you the name and phone number of my doctor if you want. We can trade emails

Last edited by marbach52; 07-06-2012 at 02:02 PM. Reason: Gave out names and phone number.

 
Old 07-06-2012, 09:02 AM   #4
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marbach52 HB User
Re: do i have to die before they figure this out? Lyme, Ms, fibro ??

Posted twice!

Last edited by marbach52; 07-06-2012 at 09:49 AM. Reason: Posted Twice

 
Old 07-06-2012, 09:52 AM   #5
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marbach52 HB User
Re: do i have to die before they figure this out? Lyme, Ms, fibro ??

I can't find the "Lyme Newbies" post?

 
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