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 Post subject: rambling response update
PostPosted: Mon Jul 20, 2009 10:11 pm 
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Joined: Thu Jul 16, 2009 6:46 pm
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thank you all very much for your kind and helpful words. i hope this letter finds you at least in great spirits if not in quite great health.
(esp. you krissy!! blessings to you and yours x5)

i apologize for taking so long to re-post but im sure you all realize what i mean when i say that i am being fairly overwhelmed by everyday life+lymeco.
i am just trying to process all of the info ive been devouring over the last four days. im very tired, i may ramble, hehe.

believe me when i tell you that i have cried with you guys. i read all of the stories that i could find and i am saddened and outraged by the seemingly willful disregard by the powers that be, amazed at the strength exhibited, and humbled by the selflessness of the people who have reached out to me and anyone else with this complex disease. i have found new benchmarks of courage through you.

oh, yeah. im pretty emotional lately, haha.

well here is some more info for those keeping my personal score with me.
i forgot to mention that i dont have insurance, so i dont have to worry about being denied for anything. found an llmd VERY close to home. his wife called me on a saturday to talk about my issue. yeah, a saturday!! not sure how thats going to work out, she was very helpful with info but wanted me to try to get my reg md to go the extra mile first. i was a little demoralized but we'll see. called recommended lab and got coinfections panel sent to me, waiting for arrival. they suggested lyme tests but i already got clinical dx. i assume thats good enough. (i dont have to inform anyone of the costs of these tests im sure.) i hope to take that coinfec panel with some wonderful info to my reg md and tell him i need him. i say reg md but ive only seen him twice, three days apart a week ago. and hes actually just a physicians assistant, lol. i think it might work to my advantage though. maybe there is a modicum of compassion and idealism that i can capitalize on.

physically i feel 80%. the scene of the crime, i.e. left shoulder bite zone has a weird needle feeling deep inside, left arm veins bulging a little and left arm is sore. esp. at shoulder and what ill call my elbows armpit. tingley too. knees hurt, just the backs, fronts and sides of them. and a stiff neck (waayy up where my neck meets my head). headaches have lessened to a constant dull pressure around my eyes.

my self concerns are that the low dose of doxy that im on is just driving bb further into tissue and will be more difficult to deal with. should i stop, should i double dose for half the time, or stay the same for now? those questions dont seem as pertinent now that im assuming coinfec and waiting on panel cause most info says treat coinfecs first. my brain is trying to organize things in a very linear way. when you are used to thinking a certain way and are unable to think in that same way anymore, problem solving has become difficult. i own a construction company and if it wasnt so pathetic it would be laughable what a bumbling idiot i am at the jobsite. pressures of organizing the labor force, clients, completing jobs, getting new jobs, and trying to deal with this. i try to step back and realize that this is capitalism in action and for better or for worse i have to play the game. the stakes seem pretty high though and im tired. aargh

well...once i get a little better handle on this ill try to be more responsive to other posts and be more timely. you are all in my heart.

what a ride, wheee
truly yours,
jonathan


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 Post subject: Re: rambling response update
PostPosted: Mon Jul 20, 2009 10:29 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
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Hi Jonathon,
Thanks for checking in.

Yes, all this can be so overwhelming - it took me really 2 years to get all of it fully and that was with non-stop study.

Crazy to have a disease that is a fight w/doctor's, insurance companies and the governement (CDC/IDSA).

I wouldn't worry too much about driving Lyme further on low dose doxy. Low doses can work too, although higher doses are recommended, many simply cannot do the higher doses because symptoms increase (herxing) is just too much to deal with. But hopefully the LLMd will come up w/a good protocol.

Also-know that even if the co-infection tests are negative, they are imperfect. It is also a clincial diagnosis. Here are symptoms of the coinfections to help you see if you think you may have any co-infections. MOST Ld patients have one or more: viewtopic.php?f=10&t=313

Some LLMd's go after co-infections first and other's don't. There just is no one set way to do this. It is all hit and miss and we each will get well a different way...that is what makes this so tough. Here is some more information on treatment from the "pioneer" in Lyme Disease treatment protocols. He was the BEST..he retired a few years ago, but updates his treatment guidelines every so often. It is 33 pages, I printed it and refer to it often - it will help you a lot in understanding treatment. Here is the link to the Lyme "bible": http://www.ilads.org/lyme_disease/B_gui ... _17_08.pdf

Also,hope you saw this section at the main site - lots more information to confuse you...lol! http://www.truthaboutlymedisease.com/resources.html


We are here for ya!
Dana

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