Although I don't post as often as before, here is my ``inspiring story''......
6 years a go I was a ``newbie''; I didn't know what this disease truly meant. Today, I'm 100% sx free; even my residual sx went away. God only knows for how long, but for now I'm feeling mostly sx free. This is more than enough compared to my first years not only suffering the horrible and indescribable symptoms but to find friends who talked the same ``language''.
I just want, with a few words, to let you know what kept me battling this disease even though I was getting, at some point, sicker and sicker. You know even after years of abx you might go down the hill if co-infections have not been treated.
The first LLMD I met was Dr. J, New Haven ,CT.
As some of you know, I got bitten at a state park in FL along with my 2 daughters in May 2000. To make the story short, I was misdiagnosed by an ID; I didn't have the rash, FL is not endemic, my bloodwork was negative, my ``subjective sx'' were anxiety: the perfect recipe for disaster, or maybe a wheel chair. Who knows ?
At least I had the privilege of clearly recalling tick bites.
But, since things happen for a reason and I really find this one complicated to believe; since my daughters were infected, too, I ended up meeting with Dr. J in his office. He is our ``Angel''.
While I was treated by a NON LLMD DR, due to the fact that I didn't have enough money at the time, my daughters had the privilege to see the best LLMD in the world for children.
He treated them and both went into remission after abx treatment for 9 months. On the other hand, I was sicker even though I was on abx (wrong dosage, wrong abx, etc). Dr. J said several times that Lyme should be treated until sx disappear.
A couple of years later, in 2002, I was prescribed other abx `s some old sx disappeared other new ones appeared It seemed like the never ending story, but by repeating Dr. J's words in my head, `` Until sx disappear.'', motivated me to move mountains, to question my whole family, to stop visiting some friends and relatives and to build other relationships, to find the money to see an LLMD and definitely educating my self on medical studies, other lymies experiences , and above all listening to my body.
I had the privilege to be one of many patients that Dr. B, East Hamptons, NY treated. He addressed my bart and babs and other issues like H pillory, etc... At this point, not only the improvement was enormous, but Dr. J's words were proving to be true. ``Until symptoms disappear.''.
Later on Dr. B retired and although I was almost symptom free, regarding my health, I knew the job was not complete. One more time the ``enormous'' privilege or the ``miraculous opportunity'' to go to another great LLMD. Dr. H, NY.....after some months under his care he told me `` no more abx.'' and I've been abx free since then;only Cowden's+ supplements.
As you see Dr. J made, not only me, but my loyal husband also to believe and pursue what once I thought was impossible. Not only that I was going to be at a stable health level, but to believe in myself, too.
Now : WITH TEARS STREAMING DOWN MY FACE I'M MOVING MOUNTAINS FOR HIM PLEASE HELP ME: COME TO THE HEARING. MY FAMILY AND MANY OTHERS ARE FUNCTIONAL BECAUSE OF HIM THERE ARE MANY MORE KIDS WHO NEED HIM.
P.S Wanted to add, too, that after more than 4 years abx and sx free my youngest relapsed or got re-infected. Of course, none of her local doctors knew she was relapsing or suffering of lyme disease. I was suspecting she was, but was not sure and having lyme myself I was tagged ``obsessed with lyme'' when she landed twice with cardiac involvement in the ER. One more time the only person who really helped was Dr. J and that's another story.
[ 12. April 2007, 10:36 AM: Message edited by: Lymeblue ]
Posts: 983 | From The sky | Registered: Feb 2005
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Thanks for the inspiration. My dd may have Lyme and if she does, I hope to take her to Dr. J. That will depend upon all of us supporting him and the trial & medical review board.
he needs our prayers and financial and physical support. I can do two of the three and am.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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First LLMD DR B...did treat bart and babs separately leva for bart and/mepron/zith/artemisia for babs...Dr H both co -infections at the same time leva for bart and malarone/lariam for babs.
Posts: 983 | From The sky | Registered: Feb 2005
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Posts: 983 | From The sky | Registered: Feb 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
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Nice to hear LymeblueY!*)!!
Doc J has helped dozens of Lymed kids out here in CA- always happy to consult with ANY doc for free!!!!!
And himself even taking calls in the middle of the night from Lymed parents!!! One support group mom told me she called him once in a panic beacuse her daughter had heart problems and she had not realized time difference and was on the phone with him from 1-3 am in the morning HIS time!!! And he NEVER said a word to her about the time- and she was so distraught she never noticed- until the next day!!!!!!!
HE IS A SAINT*)*)!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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