@Antares in NYC
I had a spinal tap about six years ago and it was useless. I had been diagnosed with Lyme a couple of years earlier but all the tests (bacterial, viral etc) from my spinal fluid were negative. In addition as a result of that test I was forced to bed for weeks with an inflamed spine and meninges. It took me over a year to fully recover.
I'd suggest anybody doing a spinal tap (esp if inflammation is an issue) preferably not to do it as an outpatient, to rest in bed for at least a week (no unnecessary walking, sitting or standing) after the test and during that time not to lift anything heavier than a cup of tea.
PS:
Here's Dr Burrascano's views on Spect scans of the brain, pcr and spinal taps in Lyme:
http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf
MANAGING LYME DISEASE, 16h edition, October, 2008
SPECT scanning of the brain- Unlike MRI and CT scans, which show structure, SPECT scans show function. Therefore SPECT scans give us information unattainable through X-rays, CT scans, MRI’s, or even spinal taps. In the majority of chronic Lyme Borreliosis patients, these scans are abnormal. Although not diagnostic of Lyme specifically, if the scan is abnormal, the scan can not only quantify the abnormalities, but the pattern can help to differentiate medical from psychiatric causes of these changes. Furthermore, repeat scans after a course of treatment can be used to assess treatment efficacy. Note that improvement in scans lag behind clinical improvement by many months.
If done by knowledgeable radiologists using high-resolution equipment, scanning will show characteristic abnormalities in Lyme encephalopathy- global hypoperfusion (may be homogenous or heterogeneous). What these scans demonstrate is neuronal dysfunction and/or varying degrees of cerebrolvascular insufficiency. If necessary, to assess the relative contributions of these two processes, the SPECT scan can be done before and after acetazolamide. If the post acetazolamide scan shows significant reversibility of the abnormalities, then vasoconstriction is present, and can be treated with vasodilators, which may clear some cognitive symptoms. Therapy can include acetazolamide, serotonin agonists and even Ginkgo biloba, provided it is of pharmaceutical quality. Therapeutic trials of these may be needed.
Acetazolamide should not be given if there is severe kidney/liver disease, electrolyte abnormalities, pregnancy, sulfa allergy, recent stroke, or if the patient is taking high dose aspirin treatment.
PCR tests are now available, and although they are very specific, sensitivity remains poor, possibly less than 30%. This is because Bb causes a deep tissue infection and is only transiently found in body humors. Therefore, just as in routine blood culturing, multiple specimens must be collected to increase yield; a negative
result does not rule out infection, but a positive one is significant. You can test whole blood, buffy coat, serum, urine, spinal and other body fluids, and tissue biopsies. Several blood PCRs can be done, or you can run PCRs on whole blood, serum and urine simultaneously at a time of active symptoms. The patient should be antibiotic- free for at least six weeks before testing to obtain the highest yield.
Antigen capture is becoming more widely available, and can be done on urine, CSF, and synovial fluid. Sensitivity is still low (on the order of 30%), but specificity is high (greater than 90%).
Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.
I was so cross with myself and wouldn't want anyone else to make the same mistake.