If you are denied benefits for Lyme treatment due to a negative CSF test,
the quotes with sources provided below may help support your position.
LB [Absence of proof is not proof of absence. Multiple CSF studies have proven CSF testing can miss 75% or more of those with neuroborreliosis (neurological Lyme). Therefore, CSF testing is not generally recommended. If it is performed, it is generally used to rule out other conditions.]
“We found abnormalities which confirmed inflammation in CSF in [only] 24.3% of patients. Patients with positive IgG antibodies against Bb in CSF and confirmed their intrathecal synthesis had never had EM [Lyme rash] in the past. Przegl Lek. 2010;67(3):181-3. [The analysis of epidemiology, clinical symptoms, serological tests in the course of borreliosis]. Biesiada G, Czepiel J, Leśniak M, Garlicki A, Mach T. Klinika Chorób Zakaźnych, Katedry Gastroenterologii, Hepatologii i Chorób Zakaźnych, Collegium Medicum, Uniwersytetu Jagiellońskiego
[Abstract:] " RESULTS: Of the 35 of 83 (42%) patients who were positive for OspA antigen in their CSF, 15 (43%) were antigen positive despite being antibody-negative in CSF. Seven of these 15 (47%) had otherwise normal routine CSF analyses. … Since CSF antigen implies intrathecal seeding of the infection, the diagnosis of neurologic infection by B. burgdorferi should not be excluded solely on the basis of normal routine CSF or negative CSF antibody analyses." [Article:] "Prompt and precise diagnosis is difficult because basic microbiologic tests such as culture and staining have not been useful, on a broad scale, to document the presence of the spirochete in a body fluid. Instead, detection of specific antibodies to B burgdorferi in blood and CSF is commonly used to support or refute a clinical suspicion of infection. Many of the commercially available assays have been plagued by lack of sensitivity, specificity, and reproducibility. Furthermore, the absence of free antibodies to B burgdorferi components has been documented in well-characterized erythema-migrans-positive cases of Lyme disease, including those with prominent neurologic involvement." Detection of Borrelia burgdorferi-specific antigen in antibody negative cerebrospinal fluid in neurologic Lyme disease. Coyle PK; Schutzer SE; Deng Z; Krupp LB, et al. 1995 Neurology, 45:2010-2014
"...spirochetes show a peculiar feature compared to other bacterial neurologic infections: the organisms can be present in CSF without inducing inflammatory changes. This is well-documented for neurosyphilis, leptospirosis, and relapsing fever, and appears to be occasionally true for Lyme disease as well." In "Lyme Disease," Coyle PK. 1993 Antigen detection and cerebrospinal fluid studies. ed. P. Coyle, p.143
“For patients with neuroborreliosis, the diagnostic sensitivities in CSF and urine samples were 17% and 7%, respectively.” Mol Diagn. 2000 Jun;5(2):139-50.
Diagnostic value of PCR for detection of Borrelia burgdorferi DNA in clinical specimens from patients with erythema migrans and Lyme neuroborreliosis. Lebech AM, Hansen K, Brandrup F, Clemmensen O, Halkier-Sørensen L. Borrelia Laboratory, Department of Clinical Biochemistry, Statens Seruminstitut, Copenhagen.
"Of eighteen seronegative LD patients, 14 were OspA PCR positive on mononuclear cells and 5 were positive on CSF. ...Our results provide evidence of a correlation between certain HLA genotypes and the ability to mount an antibody response to Bb.” Contribution of HLA alleles in the regulation of antibody production in Lyme disease. Wang P; Hilton E. 2001 Front Biosci, 6:B10-B16