My balance is still pretty off. I don't notice it much but I cannot stand on one leg and balance at all or walk in a straight line....
My slurring is pretty much gone. Unless I am herxing or extremely tired will I slur.
I've been on abx for 4 months now. I also have been dx'd with Bart and Babs.
anyway, i told my story so many times. we've actually found vacation photos we took on our visits to Nantucket Island and there on my leg are textbook bullseye rash. how i found out i passed it on to my children. the first in '91, 2nd '93, locally in '96 get recurring rash on foot where that one was, and '98 and it was present when i saw UPENN peter l. schwartz and he wouldn't even look at the wierd sores.
an ID specialist, roger e. neiman, taunting me in my records "no dr has seen the rash and we had no photos of it". had a recurring rash on my foot from '96 rash at time of visit, but he didn't bother to do much of an exam. said i no longer had an active lyme infection if in fact i ever had lyme. then we turned up the vacation photos we unwittingly took of the rash. how i found out my children got lyme from me.
i had tested neg. on UPENN lyme test, though i was assured first visit , before any lab work ordered , by petie schwartz, that i most definately did not have lyme, i had an incurable disease called "fibromyalgia". too many things wrong by then. he was just going to let me die.
i only had the LUAT from IgeneX labs pos at that point ( highly highly pos ) but found out drs just laugh at that test "everybody tests pos..." and a neg W.B. not sure that it was actually neg, as the lab and dr refused to report the bands. later on another western blot, i was CDC pos on Igm western blot.
now have a slew of pos pcr's from various labs as well as pos babesia test and abnormal brain spect scan showing what is consitent with lyme encephalopathy. and roger nieman, the aforementioned ID specialist , 6 mos after seeing me, in a newspaper article, trying to discredit a PA lyme literate dr, says that he has never seen a patient with babesia in PA. HE SAW ME 6 MONTHS EARLIER WITH FULL BLOWN ACTIVE LYME AND BABESIA! and he is supposed to be the best!
and my daughter went to a small private quaker school - due to problems from undx lyme - with the daughter of
"the best" pediatric infectious disease specialist in teh Philadelphia/So. Jersey area. knew us for 4 yrs and her daughter was in the same after school program with this woman's daughter. was confiding in her and the other moms in that small group, not knowing i was confiding in the enemy. i knew nothing of the politics surrounding lyme. too "alzhiemer" to even realize this horrid "fellow mom" was a dr, let alone pediatric ID spec.
so, what i am trying to say, is i know first hand that so many drs do know they are doing harm. and have great stuff in my med records. and then finding the photos!
so, you really really need to be seen by a truely Lyme literate medical dr (l.l.m.d.). if you post in "seeking a dr" and tell people where you are from, they can direct you to a "l.l.m.d.". i am so glad alslyme reached you. so many of us.... so many i know where i live, that despite what i tell them, "listen to their drs"....
Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm
Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html
Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html
Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html
Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html
Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html
Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html
The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html
More info: http://www.ilads.org/
Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html
Lyme Disease State Info http://www.lymeinfo.net/support.html
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oops!
Lymetutu
I went thru it (and still do on occassion) about 1 1/2 years ago shortly after a car accident. I sounded like a stroke victim, and could barely stand.
I had a spinal tap, doc thought I had intercranial pressure - not sure if so, but they took out lots of fluid for samples, nothing was found but it made my speech better.
Please don't get that serious if you don't have to, just a story to tell.
good luck!
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
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++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )
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