A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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lumbar puncture?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by saltgirl, Jan 20, 2015.

  1. saltgirl

    saltgirl

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    My doctor recommended trying B12 injections, which I would like to start, but I would like to know my B12 and Folate levels before I begin. I feel very confused about my laboratory findings. Before supplementing with B vitamins, my B12 levels were always low normal (400-500 range). After I started supplementing, my labs were consistently off the charts high (1,700-1,900).

    I stopped taking B complex and Levocarnitine on December 18, 2014 and would like to redo my labs after some time has passed. I am also considering a lumbar puncture. I know a LP is invasive, but I am feeling quite desperate. Of course, I will consult with my neurologist first. If she agrees to the LP, what should I request beyond measuring B12 and Folate CSF levels?
     
  2. halcyon

    halcyon Senior Member

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    You may also want to have homocysteine and methylmalonic acid levels tested as these are supposed to be another way to determine folate and B12 status.

    What kind of symptoms are you having?
     
  3. minkeygirl

    minkeygirl But I Look So Good.

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    Which B12?
     
  4. Sushi

    Sushi Moderation Resource Albuquerque

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    Laboratory B12 results are usually not accurate for B12 as they measure total B12--both active or usable and inactive or not usable (excuse the inaccurate language!) Rather than an invasive lumbar puncture you could consider the methylation panel from Health Diagnostics which measure several form of folate. And, as @halcyon mentioned, a methylmalonic acid test.

    Sushi
     
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  5. beaker

    beaker ME/cfs 1986

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    An LP seems rather drastic imo.
    I've had 2. Both landed me in ER w/ hospital stays and severe relapses.
    Both I did for studies.
    I would not have another unless it was life or death situation.
     
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  6. Valentijn

    Valentijn Senior Member

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    Another good one for functional use of B12 is holotranscobolamin (holoTC).
     
  7. ukxmrv

    ukxmrv Senior Member

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    I've avoided a LP (even though a Neurologist booked me in for one) because other PWME have had such severe and long lasting bad reactions to them.
     
  8. saltgirl

    saltgirl

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    I have had both those tests as well. I also tested B12 Binding capacity and Folate RBC. Everything is normal or off the charts high. I am Homozygous for MTHFR C677T, Homozygous for FOLR2, and Heterozygous for FPGS. I have ASD, Narcolepsy, Ehlers Danlos Syndrome, Dysautonomia, and celiac disease. I suffer from extreme fatigue, muscle weakness, and cognitive decline.
     
  9. Tammy

    Tammy Senior Member

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    I don't think you should get an LP for the purpose of getting a b12 or folate level............if I'm understanding you right?
     

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