posted
could you share your story with me,please
Posts: 24 | From pa | Registered: Oct 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I'll try to give you my reader's digest version.
In the summer of 1988 spent a lot of time in my garden. Was always being bitten by something or other. Had flu like symptoms that summer, but since my kids were in summer camp and periodically sick I didn't think anything of it. Don't remember a rash in particular.
By the winter of 1991 I developed Reynaud's syndrome and depression. Was also diagnosed with mitral valve prolapse. Nothing unusual about the blood work except an elevated ANA titer.
Fast forward to 1995. I started having trouble walking in that my ankle would turn. Also pain in my right knee. "Clicking" elbows which I attributed to shoveling snow the winter before?!
By the fall of 1997 I had another deer tick bite and was now in pain from my neck to my toes on my right side and was now unable to lift my right leg. Had an EMG which didn't show anything. ANA titer was even higher.
My PCP put me on doxycycline and all symptoms cleared up except the right leg weakness.
This started my roller coaster ride of symptoms, but always it was the right leg that was the #1 problem that didn't go away.
5 MRIs showed nothing. Neither did another EMG, Xrays, Doppler of my legs and gallons of blood work.
Took many antibiotics (Zithromax, Suprax, Biaxin) even IV Rocephin. Would get better, but never 100%.
In 2003 I wasn't on any abx at all and had a stressful job which resulted in my health deteriorating rapidly. Started walking with a cane because my balance was so bad. Had traditional Physical Therapy. I've also done Feldenkrais and KMI in the non-traditional.
Back on abx in 2004 for almost the whole year. My PCP was a great guy, but didn't really know how to treat me.
Started seeing an LLMD February 2, 2005. Igenex test showed active Lyme infection. Have been treating with Ketek, Plaquenil and Doryx. I can lift my right leg, but it's now the left one I can't lift! Lots of herx symptoms. Joint pain galore, including that pesky right knee. Had to start using a walker immediately after starting the new regimen of drugs.
So, that's my story -- abbreviated believe it or not.
The Bb is ingrained in my central nervous system. My LLMD estimates I've got aboug 4,000,000 in my body.
I know I will not get better overnight, but today I felt better than yesterday. It's a cure of inches, not miles, and minutes, not days.
I hope this has been of some use to you.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Monica you are a real fighter & hope you get better with your new LLD.
I wonder how he can est.4,000,000 bb in your system? Is there some sort of test or scale he is going by?
Take care and hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
You know I didn't question his estimate of the bacteria. I just thought, "Hmmm. That SEEMS reasonable!" I think I'll ask next time I see him (2/11).
Of course we won't discuss the ducks I saw. The neurologist who ran the EMGs and blood work, didn't believe in chronic Lyme, and thought I had something "exotic." Was gung ho on a spinal tap, but I declined and never went back.
Or the rheumies. One thought I had lupus (and this is an alleged LLMD in NJ). The other believed in chronic Lyme, but didn't think I had it. I pointed out I had every symptom in the book!
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
monica: thank you for sharing your journey. i am sorry for your,our,painful journey..perhaps we will someday know WHY.
until then may S/He who knows you so well and loves you so much, hold you gently in the palm of HIS/HER hand.
Posts: 24 | From pa | Registered: Oct 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
monica, thanks for sharing your remarkable journey. let's hope that days will pass into weeks of recovery and that you'll have some healthy years soon.
thanks again
hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Thank you for all the well wishes.
We MUST believe in the inevitability of better health.
Of course, it's very hard when every part of your body hurts and you can't walk across the room, but I try to keep a positive outlook.
My ex-husband's mother (who is one of my favorite people on the planet) has been fighting non-Hodgkin's lymphoma for 9 1/2 years. I attribute it to her wonderful attitude, one I try to emulate.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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