LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Where to obtain articles on unreliability of Lyme testing?

 - UBBFriend: Email this page to someone!    
Author Topic: Where to obtain articles on unreliability of Lyme testing?
HamDune
Member
Member # 14139

Icon 1 posted      Profile for HamDune     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi everyone,

I've so far been very fortunate to have a couple LN members point me in the right direction on this topic, but thought I would share this on the forum to obtain more guidance as well as have it out for others who might be in a similar situation as myself.

I am appealing my denied SSDI decision, which was largely due to "insufficient diagnostic evidence", despite my SPECT scans and CD57 being consistent with chronic Lyme.

If anyone could post links or guide me to CDC articles, esteemed medical journals, studies, etc. on the inaccuracy of the WB and other Lyme tests -- as well as showing that Lyme is a clinical diagnosis more than anything.

Thanks in advance to everyone that replies... it is all so helpful. If anyone has anything else to add, feel free as well.

Posts: 85 | From Texas | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
LuluBellesMama
Member
Member # 22583

Icon 1 posted      Profile for LuluBellesMama     Send New Private Message       Edit/Delete Post   Reply With Quote 
i would have an attny and perhaps you can get ssdi based on your symptoms, not dx.

--------------------
------------
9.16.09 IGG+ 23 41
9.25.09 dx w/Lyme
10.22.09 first LLMD Appt

http://www.mylymelife.com

Posts: 69 | From CT | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
HamDune
Member
Member # 14139

Icon 1 posted      Profile for HamDune     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi LB's Mama, thanks for your feedback, I appreciate it. Sadly, I have had an attorney the entire time and my LLMD wrote a statement detailing my degree of disability due to intense symptoms.

The ALJ that handled my case disregarded all of this almost immediately and stated that because my WB was negative, I could not possibly have Lyme.

So, now I am at the federal level and want to cover all bases that the ALJ used against me in (mis)handling my case.

I have seen where several people have referenced great articles pertaining to the high rate of false negatives in testing, thus making Lyme a greatly clinical diagnosis.

I'd be grateful if anyone could steer me to some of these studies, especially if anyone has been in a similar situation in which particular submissions really aided them.

Thanks everyone. :-)

Posts: 85 | From Texas | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
i thought of something else, have YOU requested a copy of your entire file be sent to your local ss office where you first filed?


in it they should show ALL the evidence they used against you; make copies of all that and use that in rebutting all their comments!

i used my file preparing for my 2nd alj hearing...it worked.


if they allow you to do this, remember you are being watched like a hawk! how you dress, act, ability to sit for how long, how often you go to restroom, etc. anyway it was another thought.

IP: Logged | Report this post to a Moderator
JamesNYC
LymeNet Contributor
Member # 15793

Icon 1 posted      Profile for JamesNYC     Send New Private Message       Edit/Delete Post   Reply With Quote 
The CDC SAYS that lyme is a clinical diagnosis. What basis are they demanding a positive test?

What criteria are the applying for a positive WB? The CDC criteria is in the framework of a epidemiological survey, not as a diagnostic test.

Look to Cure Unknown, by Pam Weintraub to find more info on the problems with testing. She footnotes many of her sources.

James

Posts: 872 | From New York City | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
also PJ LANGHOFF'S, THE BAKER'S DOZEN...lunatic fringe, junk science...

it's all about the IDSA, infectous drs. and she has over 1,000 links REFUTTING what they say .... a real labor of love.

see if you can check it out from your local library on INTRA LIBRARY LOAN.

or perhaps someone in your area, support group has it and will loan it to you.

IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
See "Seronegativity" section.

http://www.lymeinfo.net/lymefiles.html

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20332 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436

Icon 1 posted      Profile for shazdancer     Send New Private Message       Edit/Delete Post   Reply With Quote 
Articles on unreliability of Lyme testing:

Maloney EL The need for clinical judgment in the
diagnosis and treatment of Lyme disease. Journal of American Physicians and Surgeons 2009;14:82-89
http://www.jpands.org/vol14no3/maloney.pdf

And from her bibliography:

Trevejo RT, Krause PJ, Sikand VK, et al. Evaluation of two-test serodiagnostic method for early Lyme disease in clinical practice. Journal of Infectious Diseases 1999;179:931-938.
http://www.journals.uchicago.edu/doi/full/10.1086/314663

This study found the sensitivity of
two-tier testing in early Lyme disease to be 29%-32% for early Lyme.

Bacon RM, Bickerstaff BJ, Schreifer ME, et al. Serodiagnosis of Lyme disease by kinetic enzyme-linked immunosorbent assay using recombinant VlsE1 or peptide antigens of Borrelia burgdorferi compared with two-tiered testing using whole cell lysates. Journal of Infectious Diseases 2003;187:1187-1199.
http://www.journals.uchicago.edu/doi/full/10.1086/374395

This study found the sensitivity of
two-tier testing in early Lyme disease to be 38% for early Lyme.

Ledue TB, Collins MF, Craig WY. New laboratory guidelines for serologic diagnosis of Lyme disease: evaluation of the two-test protocol. Journal of Clinical Microbioogy 1996;34:2343-50.
http://jcm.asm.org/cgi/reprint/34/10/2343?view=long&pmid=8880477

In late Lyme, sensitivity of the testing procedure was found to be 44% in this study.

Dressler F, Whalen JA, Reinhardt BN, Steere AC. Western blotting in the serodiagnosis of Lyme disease Journal of Infectious Diseases 1993;167:392-400. (abstract only)
http://www.ncbi.nlm.nih.gov/pubmed/8380611

In late Lyme, sensitivity of the testing procedure was found to be 57% in this study.

Posts: 1558 | From the Berkshires | Registered: Jul 2001  |  IP: Logged | Report this post to a Moderator
HamDune
Member
Member # 14139

Icon 1 posted      Profile for HamDune     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all for your input, each bit of it is greatly appreciated! Betty, you have been an immense help, and Tincup, you have helped me quite a bit on this topic, even in the past. ;-)

shaz, I finally have some time (and brain power) to go through some good links, so you sent me these at the perfect time.

Thanks so much everyone... hope to hear from more of you.

Posts: 85 | From Texas | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
HamDune
Member
Member # 14139

Icon 1 posted      Profile for HamDune     Send New Private Message       Edit/Delete Post   Reply With Quote 
Forgot to ask:

Tincup (or anyone else who might have this), a while back you mentioned to me a Johns Hopkins blood test study stating that 75% of people are missed with blood tests for Lyme.

I have not, for the life of me, been able to locate that study in full... only abstracts and brief references.

Does anyone know where the actual study can be located?

Posts: 85 | From Texas | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436

Icon 1 posted      Profile for shazdancer     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think this is what you are looking for, HamDune:

Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease
http://jcm.asm.org/cgi/reprint/43/10/5080

Posts: 1558 | From the Berkshires | Registered: Jul 2001  |  IP: Logged | Report this post to a Moderator
HamDune
Member
Member # 14139

Icon 1 posted      Profile for HamDune     Send New Private Message       Edit/Delete Post   Reply With Quote 
You are awesome, shazdancer.

Big thanks to you and everybody else who chimed in... now to compile all this together into something coherent, when we barely know where we are most days. :-p

Hopefully it will lead to a nice victory for me and all of us in the Lyme/chronic illness community.

Posts: 85 | From Texas | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
hd,

here's some more IF not repeated earlier ....

from dream22 member posted today for a newbie...


Here's one on the need for clinical judgment in the diagnosis and treatment of lyme disease.
Good synopsis: FALL 2009

www.jpands.org/vol14no3/maloney.pdf


Regarding testing, you may want to direct the md to the IDSA guidelines review panel hearing website from the summer.

It is bound up in the controversy over conflicts of interest in the development of the guidelines set forth by the IDSA in 2002.


http://www.idsociety.org/Content.aspx?id=15026

http://www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


One of the presenters (here's the transcript) reviews the deplorable rate of inaccuracy with conventional tests:

http://tinyurl.com/inaccuratetests


Reasons why there are so many false seronegative test results:

http://www.anapsid.org/lyme/lymeseroneg.html


There are 2 standards of care re: lyme disease. The most important part being that treatment is based on informed choice of the patient. Ultimately, your treatment is up to you:

http://www.lymemed.nl/discussie/johnson.pdf

IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Glad you are getting it!

Don't let the tick win!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20332 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.