Lyme Disease Support Group

My daughter has suffered from Lyme and coinfections for the past 12 years, has had several failed IV antibiotic treatments, although with only one antibiotic at a time and is just getting worse.

She is now barely able to get out of bed for a few hours each day.

I thought the Research Center would be able to make treatment suggestions but am not sure it will reveal anything productive or worthwhile.

Given it's two days of extensive testing and quite expensive, I thought I'd reach out to see what others have experienced. Thanks.

broke up solid block text to short paragraphs; emphasized, bettyg, leader

Post edited by: Bettyg, at: 02/27/2012 01:04 AM

bettyg, llmd coordinator/leader/iowa activist

Welcome to MD JUNCTION! I'm so glad you found us! You’ve come to the right place for education and support!

Private messages DELETED in 30 days!

ARCHIVE, upper right!

My WELCOME LETTER is posted at the top of SUPPORT FORUM in sticky pin full of good info and HYPERLINKS ready to be read.

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/2356916-bettygs-welcome-letter-wgood- beginner-links-

The most important things are at the top; MUST READ and print off as mentioned there already to start your lyme/co-infection journey with us all.

The 1st things to do are:

• JOIN LYME BOARD;

• Post in LLMD REQUEST FORUM for a LYME LITERATE md; see my welcome letter and the INSTRUCTIONS there if you are SPECIALLY FROM CALIF. Where it’s broken down into 8 NAMED AREAS.

• You’ll need to give me my calif. NAMED area where you live in the areas shown there in SUBJECT LINE plus if it’s for ADULT or a child; we need age of CHILD; some llmds have AGE restrictions.

• OTHER STATES will show the SPECIFIC NAME OF THEIR STATE and closest, largest city to them in SUBJECT line plus adult or child; UNDER 21; we need their age!.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/Itemid=217/func=post/do=reply

• Also, I’ll need the following info in your request post:

in your llmd request, please EDIT and add more info ok.

Are you UNDER AGE 21;; if yes, I need your age shown as some of our llmds have AGE RESTRICTIONS; thanks!

how long you've been sick

if you've tested for lyme/co-infections;

which labs doing work for which specific test, etc.

did you have western blot igm/igg done by igenex?

if yes, what were the POSITIVE & INDETERMINDED numbers; NOT negatives.

thanks for understanding; just EDIT your post. you can find all by going to left MY DISCUSSIONS, click on it.

after you add more, i'll send you names ok.

just send me a PRIVATE MESSAGE left side, giving me the direct link to come to here, and i'll send you the names ok big thanks.

Betty’s suggested posting guidelines:

NO ALL CAPS POSTS; they are illegible to me/other neuro folks!

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 42 yrs. neuro chronic lyme, so we are UNABLE to comprehend and read. Thank you for helping us help YOU

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX per paragraph and hit ENTER TWICE to doublespace between each paragraph. We’ve lost our comprehension skills to read solid block text.

we neuros lose our train of thought if the sentence is broken up in the middle; so please keep an ENTIRE sentence together as ONE. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit

ENTER key twice after each paragraph.

Go to left hand corner; click edit send. Then go to bottom and click SUBSCRIBE TO THIS DISCUSSION.

Thank you for posting in a manner that makes it easier for all to read and help others.

Bettyg, llmd coordinator/group leader/iowa activist