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Lyme Disease ForumsGeneral & SupportQuestions about the Lyme and Tick-borne Diseases R
06/23/2012 07:38 PM
DFTS
Posts: 1
New Member

I am looking for information about the Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center from people who have been patients there.

I am looking for the following information as well as anything else you want to add.

What sort of diagnostic tests and evaluation was preformed by their “Second Opinion” evaluation service?

What sort of treatment options were available? More specifically did they offer any non-antibiotic treatment options such as auto-immune treatment?

Thank you for your help.

Reply

06/24/2012 01:16 AM  Top
Bettyg
 
Posts: 26579
VIP Member
I'm an Advocate

welcome,

i suggest you start over here with a NEW post

[b]subject: columbia univ,LYME/TB CENTER, Q/A

your title was cut off and this board is way too active to read ALL posts/replies.

so please EDIT AND CUT, NOT copy your comments leaving this post EMPTY so a leader can DELETE IT ok.

start new one with he title i gave you, then you'll get more READERS and replies from participants.

always be as DETAILED as possible in SHORT area we have ok.

here's what i send to all coming here; good job on breaking up your post btw Wink[/b]

bettyg

**************

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 Qclosest, 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, we’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, a LEADER will send you names ok.

I RECENTLY RETIRED AFTER 6 LONG YRS. OF DOING THIS!

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 double space 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, Iowa activist FOREVER Wink

**************************

YES, be prepared to PAY UPFRONT!

i've heard of some requiring down payments; i wasn't aware of that one at all!!

very FEW accept insurance; why?

insurance co. allow 7 min. per patient; we can hardly say hello in that time!

you also have to follow INSURANCE'S GUIDELINES ON TREATMENTS, IDSA/infectious disease drs. socieity guidelines... BAD NEWS FOR US!

by NOT accepting insurance, they can practice ILADS/intl. lyme and associated disease lyme guidelines ... treating you longer than 4 wks. of antibiotics, herbals, and alternative therapeis.

they allow 30-60 min. appt; longer 1st time; you pay accordinatelly for those appts.

ACCEPTING INSURANCE; they get very little $$ to pay the staff/overhead of building/utilities, etc.

many call patients day before to make sure they will be there; MANY DO NOT SHOW UP NOR HAVE THE DECENCY TO CALL SAYING THEY ARE NOT COMING!!

they could get those close by to come in but NOT being called; they are OUT THE MONEY and having one hell of a time meeting the bills.

our LLMDS are NOT RICH by any means!!

i hope this answers your questions so you understand what THEY are going thru too.

hugs/prayers,

bettyg, Iowa activist forever

RETIRED llmd coordinator for 6 yrs working directly with these drs/former group leader

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

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

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
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