posted
Well I got my test results back and still no real answers. My igenex tests did show inc. (equivocal) for one borellia specific antibody and + for two non specific (flagella and heat shock protien) on one blot, the other was clear. PCR and Babesia FISH were negative...
Got my MRI back and the Neiro says there are some "white matter abnormalities" but not lesions. This doesnt say much to me since I have had life long migraines and they can cause white matter abnormalities.... The neuro also said my visual evoked potentials was slightly off in my left eye (the one without optic neuritis at the moment). He says he is leaning towards MS but is going to send me to an Infectious Disease doctor since I have had a constant low grade fever etc since this started.. oh joy...
Well that's where I am at the moment, have to talk to my lyme literate pcp when he returns from the conference.....
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
POOPOO on the shmoes you got lyme and equivical is positive in any LLMD's opinion.. after all you can't be a little pregnant can you.. you either or or your not..treat the lyme and you will feel better..
MS killed my father 29 years after being treated for that and found out he had lyme 27 years too late and while the lyme treatment made him better the damage done in the 27 years was far too much to reverse.....after being bed ridden for 2 years he was almost walking after 18 months of treatment.. and the dysphasia caused by the "MS" is what ultimately killed him.. but it was all lyme... I dont trust doctors any more not a one of them I only trust LLMD's period...
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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quote:Originally posted by bob_ffxi: He says he is leaning towards MS but is going to send me to an Infectious Disease doctor since I have had a constant low grade fever etc since this started.. oh joy...
Save your money!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lyme_suz
Unregistered
posted
Hi Bob,
If it is any consolation, getting my diagnosis was the beginning of the end of the intense misery.
People really do get better with proper treatment. and it sounds like you are knocking yourself to discover what that is for you.
My kids and I were so sick that we could go for a day or two not talking to each other except for necessities. (Where did you put my sweats? type questions) We have been taking antibiotics a little under a year...We have a long way to go, but we have been having so much fun together. We have laughed more the last couple months than the last couple years.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i don't know if neuros or infectious diseaase docs are worse---
bob-you're young, you're getting it early (some of us went 15-20 yrs with out dx and treatment), it might not hurt to follow thru with the appt -it will give your llmd more info-but don't start any treatment untill your llmd okays it.
remember-most of what you read on here is from pretty sick lymies ...when we start feeling better most of us start livng our lives again and are not on here that much--so it might seem to you that no one gets better. thats not true. i'm not sure if we ever get "cured" but for sure many of us get it under control for long periods.
it helps me to try to stay positive: -so many are worse off than me -so many are walking around with the lyme spreading inside them and they don't even have a clue it is there -make a plan for treatment...and know you will have to change it along the way... -somewhere along the line i realized i had to change my future life plans...i had put a lot of physical fun stuff on hold to raise my family and was planning on doing it after retrirement---wrong. i wish i had "made time to do my fun stuff" along the way...but whenit became clear i couldn't ski again or what ever---i let it go...found a replacement (for me kayaking) and by letting it go and not stressing over it---i think that helped me.
FOR NOW-CUZ YOUR YOUNG AND ITS EARLY-YOU NEED TO JUST GET ORGANIZED AND FIGHT IT...GOOD LUCK
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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