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Author Topic: Links for new Lyme Net members
Tincup
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Hey there Lyme mom too...

Me tinks I took too many "stupid" pills today.

I have had several questions asked to me tonight that I don't know the answers to... and you KNOW how that can make a goofy person feel right simple.

I am not a "computer person".... so sorry. I am posting to bring this up and maybe some sweet soul who still has a brain can explain.

If you still have problems.. or no replies... post a new topic and ask folks your question. Surely someone can help?

Don't give up... and GOOD LUCK!!!


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lookin4answers
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Keep it UP!
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lookin4answers
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I see some more newbies!! Welcome!
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shassler64
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RECIPEGIRL
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to the top
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RECIPEGIRL
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up for newcomers
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RECIPEGIRL
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up for newcomers
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Petra
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Rock on!

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RECIPEGIRL
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Up for newcomers to review.
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Magdalena
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I am new here and happened to click on a response from Rosemary to another new person and found this.

I am moving it up in case other newbies need to read this.

Thanks, Tincup for putting this together!


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RECIPEGIRL
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Move to the top for newcomers.
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RECIPEGIRL
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up for more to see
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Corgilla
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bg
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Tincup, thanks to everyone for bringing this back to the top for us newbies!

I have some sites too from the SS disability process of trying to get benefits. I haven't checked ALL your sites yet, but will send to you if there are not in there so you can add them for a more complete list of sites for all! Thanks for your "labor of love" tincup that you spent hours putting together! A greatful newbie, Betty G.


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bg
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added 10-19-04

from SHELLEY,
Frequent Contributor
Posts: 1500
From: columbia,sc
Registered: Mar 2003
posted 19 October 2004 00:30
www.geocities.com/lymeart3/misdiag-links.html#disease

The above site is from NIH, Natl. Institute of Health's MEDLINE library.

I personally love their medlineplus site...shows all illnesses, meds, & a medical dictionary for THAT specific illness. Sure has helped me alot since I learned of this! I highly recommend it.
==========================================

added 10-9-04 from SHELLEY,
Here's another one. (also on the good news post) --

this is the 300 OTHER MEDICAL CONDITIONS THAT LYME MIMICS W/CITATIONS ON CERTAIN ILLNESSES WHETHER IT'S REPUTABLE OR NOT! Please read -- important!
www.geocities.com/lymeart3/misdiag-links.html#disease
=======================================
from Betty G.
EDITED 10-19-04...

IGENEX is a NON-participating in health insurance plans; so when you submit IGX's PAID reimbursement paperwork plus their findings...positive or negative to YOUR health insurance company, they will only pay a VERY SMALL amount.

I paid $180 for 2 tests, IGM & IGG....they reimbursed me only $45. They said if I used a PARTICIPATING lab, I would have only paid $21 out-of-pocket vs. the $135.00!

I'm checking into MD LABS, New Jersey, if they test ALL 16 BANDS on IGM/IGG...they do accept health insurance, BC/BS...most others! They FILE your health insurance paperwork for you; IGX does NOT!
================================

The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to USA's no. 1 Lyme testing lab:

IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.

(If the early test, called IGM, is negative; the later test IGG is NOT done!)

Please see their web site: www.igenex.com for their CURRENT prices and

to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your refrigerated blood taken EARLY in the week and received in 4 days so it doesn't sit in post offices!

NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.

Medicare patients do NOT have to prepay!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.

NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).

FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting! Betty G, Iowa
==================================

Here is a LIST of ALL the web sites I've put together in the last 2-3 weeks about
SS DISABILITY & LYME DISEASE/MARSHALL PROTOCOL SITE, FORUMS, & DISCUSSION since my July 12, 2004 late stage lyme dx; misdiagnosed 34 yrs!

WESTERN BLOT INFO FROM IGENEX's web site: http://igenex.com/lymeset2.htm

Dr. Trevor Marshall's NEW DISCUSSION site & he visits these 3 boards daily trying to answer questions:
http://www.marshallprotocal.com http://sarcinfo.com/phorum/list.php?f=1
============================================
NOTE: for the BEST, most COMPREHENSIVE INFO I'VE EVER COME ACROSS:

go to DISINISSUES....disability insurance issues in yahoo group!
http://groups.yahoo.com/group/Disinissues/selprof?yguid=12748079&done=%2Fgroup%2FDisinissues%2F

I'm pretty sure the areas I found on my own below ARE found in the above link! So just look over the below I'm mentioned....it's maybe 5% of what they have put together! You don't know where to begin!

Read down thru their LINKS pages & decide what is most important. I found 3/4 down on 1st page helpful to me -- "really comprehensive site that helps explains the process of SS DETERMINATION" ....many SS rulings there!
==========================================

Social Security's ADULT IMPAIRMENT LIST - LYME disease shown on their APPROVED list of impairments, go to number 6....found after Sjogren's syndrome, etc. PLUS go to 14.09 also: www.ssa.gov/disabilty/professionals/bluebook/14.00-Immune-Adult.htm

This is mainly for those GOING THRU/WILL BE applying for SSDisabilty/SSI benefits! Otherwise, don't read.
**********************

Check out this SS site, laws & regulations, and their 10 questions/answers..you learn a lot!
[URL=http://ssa-custhelp.ssa.gov/cgi-bin/ssa.cfg/php/enduser/std_alp.php?sub_category_menus=&p_cat_lvl2=&p_lva=&p_li=&required=qcat&p_page=1&p_new_search=1&_dflt_sub_category=%7Ean y%7E&]http://ssa-custhelp.ssa.gov/cgi-bin/ssa.cfg/php/enduser/std_alp.php?sub_category_menus=&p_cat_lvl2=&p_lva=&p_li=&required=qcat&p_page=1&p_new_search=1&_dflt_sub_category=%7Ea ny%7E&[/URL] p_cat_lvl1=10&go=Go

HALLEX RULE I, 5, 3-17...this is the rule where 1st claim in Virginia's Appeals Council where the 2ND CLAIM they
will NOT work up or have the 2nd ALJudge hearing! I came across this when I was looking for something else!
http://www.socialsecurity.gov/OP_Home/hallex/I-05/I-5-3-17.html

Here's ALL of HALLEX Rules....read the headings as there are other areas that apply to us.....
http://www.socialsecurity.gov/OP_Home/hallex/hallex-I.html

Now here is the INFORMATIVE user friendly site I was referring to yesterday on APPEALS COUNCIL laws that EACH of the initial, reconsideration, ALJ, & AC have to use!

CODE OF FEDERAL REGULATIONS on SSI, old-age, disability:
http://www.socialsecurity.gov/OP_Home/cfr20/416/416-0000.htm
--------------------------------------
Edited & added 10-8-04:

Still going thru it 4 yrs., 2 months later...2nd time around like you.

1. Make sure your SSD specialized lawyer can represent you in FEDERAL COURT!

My lawyer of almost 4 yrs. in Nov. quit/withdrew from my case after my 1st lyme dr. appt. At this time, he finally told me he could NOT represent me in federal court; another lawyer would have to do this!

It was mutually agreed for him to quit me; I was not happy with him, and I was doing all the work!

He waived his attorney fee, plus his travel fees for my 1st case, & the overnight postage/copying his office did! So it was very mutual and amicable.

2. Since he quit me, I read ALL the info in both my cases that he returned to me.

I painstakingly noted EACH exhibit page numbers w/important info only:

date, drs. name, & what was important ... rashes that no one acknowledged as lyme; memory problems/concentration, when various things were diagnosed, etc.

Then I wrote the chief ALjudge in Des Moines who had sent me a letter 2 wks. prior to my lyme dx.

IMPORTANT NOTE TO THOSE REFILING 2ND CLAIMS:
============================================
(He stated they were sitting on my 2nd case NOT working it up and NO 2nd ALJ hearing UNTIL Virginia's Appeals Council decides on 1st case there 2 yrs. then. They were using Hallex rule that I showed on page 10 of tincup's posting.)

Found out later, has to be out east 2.5 YRS. BEFORE they even look at it...if then!

YESTERDAY'S UPDATE: My Iowa Sen. Tom Harkin's office Des Moines asst. contacted Virginia's AC legislative liasion rep.

I had received a letter last wk. from AC stating they had received my REQUEST FOR REVIEW and the date RECEIVED would be put in line for review .. another 18 - 30 MONTHS! Another 1.5 - 3 YEARS! Disgusted!
=======================

AC left phone message for him. My 2 cases are being COMBINED INTO ONE CASE!

So he has a call into them again to make sure my date is first date of June 02 they recd. it....not Sept. 04 when I wrote Des Moines ALJudge to REOPEN & REVIEW my 2nd claim. ----------------------
====== -- NOW IT IS ONE CASE -- NOT TWO!
Yippee...that's progress for me!

EDITED 10-8-04:
Just reread my DENIAL letter on my 2nd claim reconsideration....the one I didn't receive until 6 months after the fact, which states:

"If the appeals council decides to REMAND your client's prior app for a NEW hearing, your prior and current app may be CONSOLIDATED FOR THE NEW HEARING. We will send you a NOTICE OF HEARING at least 20 days BEFORE the date of hearing to tell you its time and place".

BOTTOM LINE: I had thought when I heard they were combined; that they had ruled "favorable" to win. NO...looks like they are planning a NEW HEARING for the 2 combined cases! Darn..not over yet! Betty

PS - an online never-met friend went all the way to FEDERAL COURT; took her 9 YEARS! Judge had told her lawyer he was going to deny this prior to hearing. But they had an independent dr. present. When the judge asked this dr. if she could do sustainable work, he read the treating drs. written medical reports, and said NO...she was approved because this dr. was there & stated in his medical expertise of other drs. reports!


DO NOT GIVE UP FIGHTING; you have to go to hell and back to be approved.

Yes, chronic fatigue was approved 3-5 yrs. ago, but even that on mine w/12-15 other things didn't budge them.


Did you have RFC, RESIDUAL FUNCTION CAPACITY, test done by your treating dr. & rheumatologist ... needed!

plus MFC, MENTAL FUNCTION CAPCITY, tests done by your psychiatrist & psychologist ... NEEDED!

Each of above goes thru SSD's process of 8 things you can/NOT do: sitting, standing, walking, bending, crawling, & 3 others I can't remember! This is your best chance for medical documentation.

Although I had a rep from SSD in Des Moines come & talk to our fibro/fatigue support group. He said they DO NOT USE THESE ..

they are done by SSD/DDS's ON STAFF MDS who never see you but use the submitted drs. skimpy medical reports on all of us! wrong!!

My case will be an example later when I find out if they used them or not! Betty, Iowa
=========================================

Added 10-9-04 from CONNIE MC...
-------------------------------
"I was approved first time around using this resource, and I had lots of education and professional work history as an obstacle to approval. It's a great resource. You can buy it for around $20 plus shipping at smazon.com.

NOLO'S GUIDE TO SOCIAL SECURITY DISABILITY
536 Pages
Getting & Keeping Your Benefits
David A. Morton, III, M.D.
Nolo Press - 2nd Edition, 2003

This book is essential for anyone dealing with a long-term or permanent disability. It is especially useful for professionals who deal with clients/patients who may be seeking SSI or SSDI benefits.

While it deals with the technicalities of a bureaucratic system, the materials are presented in an easily understandable, and non-technical format.

Samples of all the major forms used by the system are presented with guidance on how to complete them.

Excellent glossaries are placed throughout the book.

There is an explanation of what Social Security Disability is, proving a disability, appealing a denial of benefits, as well as a complete listing and descriptions of illnesses covered by Social Security.

Upon completion of the course you will be able to identify:

What benefits are available to disabled children
How age, education and work experience affect benefits
How to prepare a Continuing Disability Review
SSI Benefits and SSDI Benefits and more"

[This message has been edited by bettyg (edited 09 October 2004).]

[This message has been edited by bettyg (edited 19 October 2004).]

[This message has been edited by bettyg (edited 19 October 2004).]


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RECIPEGIRL
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Up for newcomers.
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Up to the top!
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BOOKMARK THIS PAGE!!!!!
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up to the top for newcomers
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Bringing this to the top again, and I added the below to page 10 w/my other SSD info.

10-8-04:
Still going thru it 4 yrs., 2 months later...2nd time around like you.

1. Make sure your SSD specialized lawyer can represent you in FEDERAL COURT!

My lawyer of almost 4 yrs. in Nov. quit/withdrew from my case after my 1st lyme dr. appt. At this time, he finally told me he could NOT represent me in federal court; another lawyer would have to do this!

It was mutually agreed for him to quit me; I was not happy with him, and I was doing all the work!

He waived his attorney fee, plus his travel fees for my 1st case, & the overnight postage/copying his office did! So it was very mutual and amicable.

2. Since he quit me, I read ALL the info in both my cases that he returned to me.

I painstakingly noted EACH exhibit page numbers w/important info only:

date, drs. name, & what was important ... rashes that no one acknowledged as lyme; memory problems/concentration, when various things were diagnosed, etc.

Then I wrote the chief ALjudge in Des Moines who had sent me a letter 2 wks. prior to my lyme dx.

IMPORTANT NOTE TO THOSE REFILING 2ND CLAIMS:
============================================
(He stated they were sitting on my 2nd case NOT working it up and NO 2nd ALJ hearing UNTIL Virginia's Appeals Council decides on 1st case there 2 yrs. then. They were using Hallex rule that I showed on page 10 of tincup's posting.)

Found out later, has to be out east 2.5 YRS. BEFORE they even look at it...if then!

YESTERDAY'S UPDATE: My Iowa Sen. Tom Harkin's office Des Moines asst. contacted Virginia's AC legislative liasion rep.

I had received a letter last wk. from AC stating they had received my REQUEST FOR REVIEW and the date RECEIVED would be put in line for review .. another 18 - 30 MONTHS! Another 1.5 - 3 YEARS! Disgusted!
=======================

AC left phone message for him. My 2 cases are being COMBINED INTO ONE CASE!

So he has a call into them again to make sure my date is first date of June 02 they recd. it....not Sept. 04 when I wrote Des Moines ALJudge to REOPEN & REVIEW my 2nd claim. ----------------------
====== -- NOW IT IS ONE CASE -- NOT TWO!
Yippee...that's progress for me!

EDITED 10-8-04:
Just reread my DENIAL letter on my 2nd claim reconsideration....the one I didn't receive until 6 months after the fact, which states:

"If the appeals council decides to REMAND your client's prior app for a NEW hearing, your prior and current app may be CONSOLIDATED FOR THE NEW HEARING. We will send you a NOTICE OF HEARING at least 20 days BEFORE the date of hearing to tell you its time and place".

BOTTOM LINE: I had thought when I heard they were combined; that they had ruled "favorable" to win. NO...looks like they are planning a NEW HEARING for the 2 combined cases! Darn..not over yet! Betty

PS - an online never-met friend went all the way to FEDERAL COURT; took her 9 YEARS! Judge had told her lawyer he was going to deny this prior to hearing. But they had an independent dr. present. When the judge asked this dr. if she could do sustainable work, he read the treating drs. written medical reports, and said NO...she was approved because this dr. was there & stated in his medical expertise of other drs. reports!


DO NOT GIVE UP FIGHTING; you have to go to hell and back to be approved.

Yes, chronic fatigue was approved 3-5 yrs. ago, but even that on mine w/12-15 other things didn't budge them.


Did you have RFC, RESIDUAL FUNCTION CAPACITY, test done by your treating dr. & rheumatologist ... needed!

plus MFC, MENTAL FUNCTION CAPCITY, tests done by your psychiatrist & psychologist ... NEEDED!

Each of above goes thru SSD's process of 8 things you can/NOT do: sitting, standing, walking, bending, crawling, & 3 others I can't remember! This is your best chance for medical documentation.

Although I had a rep from SSD in Des Moines come & talk to our fibro/fatigue support group. He said they DO NOT USE THESE ..

they are done by SSD/DDS's ON STAFF MDS who never see you but use the submitted drs. skimpy medical reports on all of us! wrong!!

My case will be an example later when I find out if they used them or not! Betty, Iowa

[This message has been edited by bettyg (edited 08 October 2004).]


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ConnieMc
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Good resource for anyone who needs to file for SSDI or SSI. It's available at amazon.com for around $20 plus shipping. Worth every penny, and more in my case. My first application was successful. Which is unheard of considering the fact that I had lots of professional work experience in sedentary occupations and lots of education to overcome.

NOLO'S GUIDE TO SOCIAL SECURITY DISABILITY
536 Pages
Getting & Keeping Your Benefits
David A. Morton, III, M.D.
Nolo Press - 2nd Edition, 2003

This book is essential for anyone dealing with a long-term or permanent disability. It is especially useful for professionals who deal with clients/patients who may be seeking SSI or SSDI benefits. While it deals with the technicalities of a bureaucratic system, the materials are presented in an easily understandable, and non-technical format. Samples of all the major forms used by the system are presented with guidance on how to complete them. Excellent glossaries are placed throughout the book. There is an explanation of what Social Security Disability is, proving a disability, appealing a denial of benefits, as well as a complete listing and descriptions of illnesses covered by Social Security.

Upon completion of the course you will be able to identify:

What benefits are available to disabled children
How age, education and work experience affect benefits
How to prepare a Continuing Disability Review
SSI Benefits and SSDI Benefits
And More...


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RECIPEGIRL
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up for newcomers
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bg
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bringing this to top -- looking for:

DISINISSUES -- diability insurance issues w/countless good web sites for SS disability process! I'm pretty sure, I copied this elsewhere...must have forgotten to bookmark it! uffda... Betty, Iowa


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bg
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Please BOOKMARK this; you will come back often to read the many links you find here.

Thanks Tincup! Betty G., Iowa


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bg
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Bumping up to top for newbie, Nancy/Lauren's Mom.

I had copied Shelley's post about 300 other medical conditions that lyme mimics that shows whether info is reputable or not for Nancy. Thanks Shelley. Betty G., Iowa


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bg
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EDITED: adding this wonderful, COMPREHENSIVE SS Disabiility site w/links galore from the professionals!
http://groups.yahoo.com/group/Disinissues/selprof?yguid=12748079&done=%2Fgroup%2FDisinissues%2F Betty


I just copied Shelley's below link & put it on page 10 of my posts where her 300 other conditions, similar to this link, are.
Great job Shelley. Betty G., Iowa

shelley
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posted 19 October 2004 00:30
www.geocities.com/lymeart3/misdiag-links.html#disease

This link is from Natl. Institute of Health's MEDLINE LIBRARY...very detailed & also by Art Dougherty, Calif., 2001.

I personally have used NIH's medlineplus area to find all illnesses, meds, and a dictionary for EACH illness...really has helped me & user-friendly! Betty G.

[This message has been edited by bettyg (edited 19 October 2004).]


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Magdalena
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Bettyg requested that this be added to the Newbies link.

So here's to Betty. (Best of health to you!)

This article is Part One of the 48 page booklet,

"But You LOOK Good: A Guide to Understanding and Encouraging People Living with Chronic, Debilitating Illness and Pain!"
http://www.myida.org/lookgood.htm

Maggie


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bg
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Maggie, thanks for posting the above link!

After reading the below, MD tests ALL 16 BANDS also, and they accept most health insurance coverages; less out-of-pocket for you.

IGENEX labs, Calif., does NOT accept health insurance; so you pay a LARGE sum out-of-pocket expenses.

In my case, if Igenex participated in Bc/BS, I would have only paid $21 vs. $134 !!
FYI only...

Here's what I got from MD LAB LYME SPECIALIST today/yesterday:


"Dr. Tilton, thank you for your permission to post the info on message board you furnished me for the fibromyalgia/chronic fatigue support group folks I correspond with.

I and others will be calling MD for the info you mentioned. Betty

Wed, 20 Oct 2004 17:20:55 -0400 Richard Tilton wrote:
Yes, you may post my notes. Call the lab and they will send you some info.

Dr Tilton

On Wednesday, October 20, 2004, at 12:03 PM, Betty Gordon wrote:

Dr. Tilton, thank you so much for the email back!

So MDL tests on all 16 bands of WB..IGM/IGG! Good. I want to verify this. I'd read online that MD is a participating health
insurance lab. So I want to send more business your way; but wanted to make sure the testing there was all 16 like IGX's is.

I had heard that MDL and IGENEX were the 2 top-LYME testing lab facilities we have in the USA.

I was recently dx on 7-12-04 by IGX using their WB tests...they are NON-participating health insurance; I paid a lot out of pocket for this. I hadn't heard of MDL at the time of my recent testing...learned of your company on the lyme message board.

I'm a former fibromyalgia/chronic fatigue support group leader. As I learn more about lyme testing/illness, I forward emails to those I still correspond with so they may be tested too with RELIABLE, accurate testing.

With your permission, may I post your below note on 2 lyme message boards. They asked me to check MDLabs out to see if they test all 16 bands or not. (My clinic had me retest using Mayo Clinic...they test only 5 bands there and said I was negative.) I'm learning about the differences and quality of reputable lab results.

Do you have any "free" info your company can send me? Thanks! We teach each other about our illnesses.

PS - (we have 1 phone line; I'm in bed until 11-noon daily, then on internet for 2-4 hrs. straight researching. That's why it's easier for folks to just email me on results of any questions so I do NOT waste your precious time with "busy" signals!) Betty

Richard Tilton wroteTue, 19 Oct 2004 18:53:35 -0400 :

Ms G:

Thank you for your inquiry on Lyme Western blots. MDL reports ALL bands on a blot which meet the intensity standard, regardless if they are included in the CDC recommendations.

We also report out 2 interpretations; the CDC interp as well as the Alternate Interp (which I developed and published).

I suggest that you request some of our publications and other literature on Lyme Western blots as I do not know your specific question and would not wish to provide such a detailed answer in an email. Thank you

Dr RC Tilton

Dr Richard C Tilton
Medical Diagnostic Laboratories
133 Gaither Drive, Suite C
Mt. Laurel NJ 08054

MDL TOLL FREE (877) 269-0090 "


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treepatrol
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upcyfreakindaisey
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henson2
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up for servo2


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lookin4answers
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Keep it UP!
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dullchime
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sometimes I just go back and read this and realize this pot of gold needs to go UP!
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seibertneurolyme
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To the top!
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seibertneurolyme
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This is great for a new Bea.

Bea Seibert


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RECIPEGIRL
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Up for Heather.
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AmandaPI
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Up...Great post!
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shassler64
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Great post! up
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fish
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to the top for L
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treepatrol
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Up for LeapinLizards
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bg
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Tincup and other posters,

I just went back into my personal posts from page 10 on, and DELETED all "uping/bumping" or just thanking TC for her contributions.

Tincup, this important post and Treepatrol's copy with yours/his need to REMAIN AT THE TOP...have either of you contacted Bill directly so he could make sure it stays there and then we wouldn't have all the bumping/uping.

For a newbie, they have 12 full screens to go thru before they find any other important stuff in the middle.

I'll post a new post but just the posters names I saw from page 10 when I joined your wonderful post "uping/bumping" are:

Tincup, fish, congilla, lkpod, dullchime, seibert..., amanda, henson, lookinanswers, shassler, roseisland, treepatrol, recipegirl, samantha, shelly, etc.

If we ALL who just "uped" would DELETE these unnecessary replies, the newbie would have less screens to go thru to read any important links/info that anyone else added to your wonderful post TC.

EDITED: I forgot to say why I was suggesting this. On another non-lyme board I'm on, they have "bumped/uped" a post from a celebrity 3500+ times ... no news; just bumping! That person posted once & it leads newbies to believe they have posted more than once.

How about it gang? Thanks for considering.
Betty G., Iowa

[This message has been edited by bettyg (edited 22 November 2004).]


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up !
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