I've been gone awhile, and now I have a dx

[BloominHeather]

Likely nobody remembers me..I've been away from the forum for a few months.  Wanted to check in and let everyone know that I tested CDC positive from three different labs for Lyme Disease.
My tremors, twitches, buzzing, electric shocks, burning, brain fog, joint aches, nerve pain etc... all caused by Chronic long term Lyme Disease. I have Neuro Lyme.   So even though I was convinced I had MS, I was wrong.  The "new great immitator" had me fooled.
Hopefully I'll be able to get treatment :)

So that is the forum I'll be frequenting from now on.

[Quixotic1]

I remember you!  I am thrilled for you.  If your positive test was the ELISA or the Western Blot it is likely accurate.  The ELISA is pretty reliable "when it is positive" but not very good at all when it is negative.  The general recommendations to do a Western Blot only when the ELISA is positive, don't make much sense if someone is having symptoms highly suggestive of Lyme.

As I understand it, that protocol (ELISA, if positive then WB) were formulated as a "screening protocol" to test large numbers of people.  It is felt by many not to be appropriate for diagnostic use.

Rebeccah and Stacey - Do I have this right?

Anyway, Congratulations on a diagnosis!  I hope this is the answer and the only answer.  If it is not, remember that ANY PERSON with any other disease can get Lyme disease, just like they can catch any other disease.  So a person with MS can certainly get Lyme.  The response to antibiotics will sort this out.

Quix

[SOONERMOM]

I THOUGHT that I had a western blot in January.  What my neuro wrote for was a western blot reflex test which means that they do a screening test first (ELISA, EIA, etc.--which are pretty much worthless)  and if it  comes back negative, they NEVER do the western blot-which is much more accurate.

PLEASE  make sure that if you were tested that it was actually a WESTERN BLOT and like Rebeccah said, find out if any bands were positive.

For anyone interested, here is an explanation about different testing for lyme:
http://www.drcharlescrist.com/testing.htm

Stacey

[cjacks]

I have tested neg two or three times. Don't know the type of test

Jo

[cjacks]

Hi

I'm too remember Bloomin Heather . Good to have you around again . And you can /should pop in often to remind us all about the mimics.

Its great that you have an answer...    

How long ago did any of you get bitten by a tick   I was bitten twice , in the early 80s.  First time I was sick, had the bulls eye and given antibiotic ( they didn't know about Lyme's then ) . Second , I can't remember well , I think there was redness but thats all , no tx.     I'll ask dr. this wk.

Thanks for the reminder

Jo

[sllowe]

Hi there!!!

I remember you!!!!!!!  Thanks for popping in.  You know you will still be so helpful here w/your experiences.

I hope you can beat this Lyme!!!  What are they saying as a predicted prognosis?

Hope you stay in touch!
-SL

[Want to feel well!!!]

Great news for you!  I'll bet this has been a great relief for you!  And you can be treated...best news of all!

This is just wonderful...thanks for posting your good news and wishing you wellness...soon!  

Wanna

[speechgeek]

YOu need to have a western blot (Igg and Igm). You need to ask if it's positive or negative. If your doc tells you negative ask "Did I have any bands come back positive?"

Rebeccah

[Wobbly]

Hi...glad you got a dxs and getting treatment.  Good luck with that..

What kind of test did they do to get the Dx...I hear there are a few different ones...I've been checked twice for Lyme and told No...but I don't know what kind of test they did...??  

thanks for any info on this..

andie

[SOONERMOM]

I am glad that you finally got some answers! I had my first appointment with a LLMD today and was finally accurately diagnosed with neurological lyme.  Even though I had a  CDC positive western blot for lyme, neuro #4 was still telling me that he thought that I had MS.  You aren't kidding about it being an "imitator"!  I think this makes at least 4 of us that have tested positive for lyme recently.

Best Wishes!
Stacey

[aura3]

I wish you will.  Glad to hear that you have answers.

Take care,
Aura

[speechgeek]

Well I am glad you got some answers!! I too have been diagnosed with lyme. I hope that you will check in here often as there are several that have turned up lyme positve and sharing your story may help others.

I have had 10 consecutive days of no symptoms and I have been on treatment since the end of January. I started with 1500 mg of oral amox per day and was increased to 3000 mg of oral amox per day. I also have late stage/ neurological lyme.

Please keep us posted.

Rebeccah