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
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posted
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
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bettyg
Unregistered
posted
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.
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
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.
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
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posted
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
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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
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I think this is what you are looking for, HamDune:
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
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bettyg
Unregistered
posted
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
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:
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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