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Spinal tab / lumbar puncture scheduled - what panels should I request?

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Sep 2, 2016.

  1. Antares in NYC

    Antares in NYC Senior Member

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    Hi everyone,

    My new neurologist is scheduling me for a lumbar puncture to analyze my cerebro-spinal fluid next week. She asked me to reach out to my other doctors (ME/infectious disease specialist, LLMD) so they can add their requests for panels and tests to run. We are trying to piggyback as many tests as possible from this one invasive procedure.

    Unfortunately, most of my doctors are out for the long Labor Day weekend, and fear I may not hear from them on time for the test.

    The following is the list of tests and panels that the new neurologist wants to run:
    • WBC + RBC
    • NMDA
    • Glucose
    • EBV
    • CMV
    • Lyme
    I've been researching a bit, and I think it would make sense to add some of the following tests as well:
    • Fungal tests, cytokines, Lyme co-infections (I'm positive for bartonella), proteins, lactate...
    I would like to ask anyone in the forum with knowledge of CSF tests to please add any suggestions for extra tests that could be conducted next week. Anything else that could help shed some light on my progressive cognitive/memory decline? Any tests my doctor is missing?

    For the record, recent MRIs and CT SPECT scans showed that I have brain lesions and hypo-perfusion.

    Thanks in advance for your help!
     
    Valentijn likes this.
  2. duncan

    duncan Senior Member

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    What are the testing for Lyme with? The AI (antibody index)?

    I think they can run a WB and C6 on your CSF - but this has to be specified, if I am not mistaken. You may wish to check.
     
  3. Antares in NYC

    Antares in NYC Senior Member

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    The nurse practitioner I talked to on the phone told me they are looking at titres for Lyme only.
     
  4. duncan

    duncan Senior Member

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    Sorry, I should have explained myself better.

    Similar to blood, there are different ways to check for Borrelia in CSF. I think the way some in the IDSA seem to prefer these days is looking at the ratio of Bb in blood vs CSF; that ratio is the AI.

    But I believe one can also look at the Western Blot and C6 in CSF - not certain about that, though, as it's been a while, and my memory...

    I personally have reservations about the AI, and besides, I think more insight is better insight. You should just be able to check with your doctor to see what he is ordering on the Lyme panel. When all is said and done, you may not have any say in the matter.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Can spinal tap check other viruses like VZV or enteroviruses?
     
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  6. halcyon

    halcyon Senior Member

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    As @Gingergrrl mentioned, a PCR for enterovirus would be good, though the usual caveats apply; a positive is significant, a negative doesn't mean it's not there.
     
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  7. Mrs Sowester

    Mrs Sowester Senior Member

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    I've no testing suggestions, just a bit of aftercare advice - lie flat for two full days afterwards!
    I made the mistake of thinking I'd avoided the headache and started sitting up and gently pottering about after 24 hours, the headache that hit that afternoon was like nothing I've experienced before or since, it lasted for a week :ill: I was so cross with myself and wouldn't want anyone else to make the same mistake.
     
  8. Sidereal

    Sidereal Senior Member

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    Given your zero response to aggressive ABX therapy and ongoing brain symptoms, it may be worth exploring autoimmune encephalopathies in more detail. If your neurologist is already testing you for anti-NMDA receptor antibodies it may be worth getting a more comprehensive panel for different kinds of autoimmune encephalitis. There is detailed CSF and serum testing available at Penn.

    http://www.med.upenn.edu/autoimmuneneurology/patient-care.html

    I think there is a Mayo panel as well testing somewhat different things.
     
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  9. Helen

    Helen Senior Member

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    @Antares in NYC , you may also ask them to save spinal fluid for further investigations. They surely know that they can freeze it. I had this done some years ago.
    Dr. Dan Peterson was earlier interested in collecting spinal fluid samples from people diagnosed with ME. He and Dr. Gunnar Gottschalk at Simmaron Reserach both lectured in the city where I live and talked about their ongoing study two years ago. I never heard of any result so they may still be collecting samples. I, then, was offered to send my sample to them.

    Edit: KDM told me that in late stage Lyme there are seldom abnormal lab results from a spinal tap. I guess he meant the tests that usually are used to detect an ongoing Lýme infection. I was among others tested for antibodies IgM and IgG (ask for the numbers if so, not only positive or negative).
     
    Last edited: Sep 3, 2016
  10. xrunner

    xrunner Senior Member

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    @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.
     
    Helen likes this.
  11. leela

    leela Slow But Hopeful

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    HHV6, misfolded proteins
     
  12. Mrs Sowester

    Mrs Sowester Senior Member

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    I should add that when the evil headache past I had a few months of improved symptoms, much less neck and head pain. The doctors put it down to the release of pressure.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    Did they do a "blood patch" or something to reverse the headache from the spinal tap or did it go away on it's own? I am curious how a headache from a spinal tap compares to the headache that people get from IVIG? In the ER they told me that if they'd suspected aseptic meningitis, the spinal tap was the only procedure that could verify 100% but very risky b/c of the headache (when I already had the IVIG headache) plus they were certain that I did not have meningitis. Am not saying this to scare the OP and I think the percentage of people who get that headache is small if they do the procedure right and you lie flat as you and others advised. I think a lot of people don't know that you have to lie flat for a good period of time after a spinal tap and not all doctors tell you.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Yes, this is a great idea and hopefully they can do a full panel for all of the AI encephalitis and send it to U Penn or Mayo.
     
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  15. Mrs Sowester

    Mrs Sowester Senior Member

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    @Gingergrrl No they didn't, I live at the end of a very rough farm track and at least an hours drive from the hospital so I chose not to go back to the hospital. Instead I waited it out, flat on my back for a week. We monitored my temperature, it was a little raised but not high enough to indicate infection.
    The chap who did the spinal tap was a junior doctor, it was his first one, it was a little bloody. But I'm sure I got the headache because I didn't lie down for the full 48hours. Also we thought I had MS at the time, not ME so I wasn't used to resting so much and was in the habit of pushing myself.
    An interesting feature of the headache was that it started in my lower spine as well as my head and travelled up incredibly slowly, like a bubble in a spirit level it took about 3 days for the pain bubble to reach my head and join in the pain party that was going on there too!
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    Wow, and you are incredibly brave to allow a doctor who never did a spinal tap before to do one on you! I don't think I would ever be that daring!

    Makes sense like my IVIG headache was from too fast of an infusion speed. Sometimes we have to learn the hard way!

    Wow! That sounds intense and am glad you recovered from it.
     
    Mrs Sowester likes this.

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