Lyme Disease Support Group

please EDIT your post using my below guidelines and make sure you answer all questions asked.

supper time here; back AFTER MIDNIGHT; if you've edited by then, i'll send you names then. thanks for helping us help YOU.

bettyg, leader/llmd coordinator

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

You sound so much like my symptomology. You really need a LLMD (Lyme Literate MD) for treatment. Lyme is a clinical diagnosis. Tests are unreliable.

However, the LLMDs know how to properly interpret Lyme tests, and chances are, you probably had the ELISA test run. They are junk. Pure junk.

You need to get a Western Blot done, and if there are ANY positives or even IND (indeterminate) or whatever other word is used for "it's not negative, but we technically can't call it positive because it's not dark enough" then you have Lyme.

Think of that aspect like this: when a woman takes a pregnancy test, if the line is really light, it's still a line, right? It's still positive. A doctor wouldn't say "well, it's not dark enough, so it's not known if you're pregnant." That's bologna.

So make sure you get tested, and ask for a Western Blot. Then, ASK FOR THE NUMBERS, NOT JUST THE WORDS "POSITIVE" OR "NEGATIVE." Huge importance.

In the meantime, request an LLMD in the Doctor Request forum up at the top of the page, and get scheduled for ASAP.

Many LLMDs don't take insurance, but some do. It just depends on where you're at geographically. It's not fun. But this is something that NEEDS to be done. So ask for a LLMD, then call your reg doc even and ask for a Western Blot Lyme test. When you get those results, take them to a LLMD appt. and that will be helpful in the dx (diagnosis).

Keep asking questions here, and keep us posted! We are all here for each other, and remember that no question is too small, or insignificant.

Tehre's already a wealth of info here, and you can do a search at the top as well, but make sure you type "Lyme" in the search box along with anything else, because there are hundreds of other support groups here as well. That would be a huge mess of results!

All the best,

Lauren

used quotes to enlarge text, bettyg, leader

Post edited by: Bettyg, at: 03/03/2012 01:59 AM