Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Discussion in 'Lyme Disease and Co-Infections' started by Fuzzyhead, Mar 28, 2017.

  1. Fuzzyhead

    Fuzzyhead Senior Member

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    Can anyone give me any advice on these results please?
     

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  2. Fuzzyhead

    Fuzzyhead Senior Member

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    I am in the uk by the way and been ill 17yrs.
     
  3. Crux

    Crux Senior Member

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    Wow your MCV is really high.

    It's not a clear indicator of a specific issue, but there are many possibilities. The doctor will need to further test.
    Some possibilities are : hypothyroid, liver problems, and more.
    Other causes are : B12 deficiency, folate deficiency, low B6, and low copper.
     
  4. Fuzzyhead

    Fuzzyhead Senior Member

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    What does high MCV mean? My dr won't accept these bloods because they are private.
     
  5. Crux

    Crux Senior Member

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    High MCV means, big blood cells.

    Has your doctor ever had blood tests done? A CBC, or complete blood count is a basic test. It would include MCV.
     
  6. Fuzzyhead

    Fuzzyhead Senior Member

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    Yes numerous times and this has never came up abnormal. I tested weak positive for lyme and my NK57 was low on the armin labs but the nhs basic lyme test was negative.
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Any doctor will accept an MCV of 106 because the machines are absolutely standard. It may not mean much if the haemoglobin level is normal but it would normally be investigated - probably the most common causes are hypothyroidism, folate deficiency and alcohol consumption. But a small proportion of people have a high MCV for no very obvious reason.

    In terms of the tests for infection I think it is very difficult to know how to interpret results from private labs of this sort.
     
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  8. mikeperino

    mikeperino

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  9. Thinktank

    Thinktank Senior Member

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    Besides the MCV, nothing seems out of order really.
    CD57 is a bit low, i've also seen low CD57 in people without lyme so it's not a good marker.
    I would not rely on the elispot for a lyme diagnosis, it gives too many false positives and imo can't be trusted.

    I was diagnosed with lyme disease partly because of this elispot test. Years of antibiotics, IV and oral did nothing, turns out i probably never had lyme disease. What i'm left with is a messed up microbiome, damage from oxidative stress, more allergies and food intollerances, skin problems and ofcourse a much lighter wallet.
     
    Last edited: Mar 29, 2017
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  10. Fuzzyhead

    Fuzzyhead Senior Member

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    What would you rely on for a lyme diagnosis Thinktank? Obviously somethings going on when i haven't been well for 17yrs.
     
  11. Thinktank

    Thinktank Senior Member

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    Well, my opinion might be skewed after the fiasco i've been through.
    At the moment, until better tests are available, i would only accept a CDC-positive result as lyme diagnosis, or knowing that i have been bitten by a tick.
    If negative i'd try a 6 weeks course of doxycycline (+metronidazole perhaps) to see if anything happens, a strong herxheimer reaction would indicate infection.
    I know of too many people who have not improved on years of antibiotic therapy, or even got worse. There are not only lots of people with lyme who have been misdiagnosed, but also people who received a lyme diagnosis based on false -positive tests like the elispot and perhaps Igenex.
     
  12. Fuzzyhead

    Fuzzyhead Senior Member

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    Have you had a positive test anywhere?
     
  13. Fuzzyhead

    Fuzzyhead Senior Member

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    I got ill 17yrs ago and it started with an off balance feeling and i just didn't feel right. I was a post lady at the time and very fit, went to the gym etc.
    The symptoms over the years are:
    Headaches
    Anxiety
    Brain fog
    Dizziness
    numbness
    tingling
    Can't think straight
    Muscle aches
    Restless legs
    Light sensitivity
    ibs symptoms
    Muscle twitches
    Sweating
    Night sweats
    Sore throats
    fatigue
    insomnia
    Sleeping too much (can't get up)
    Excess mucous
    Ear and jaw pain
    depression
    migraine
    eye pain
    There are more but can't think of them all at the moment.
    All these can be Lyme or any other virus/infection but it's knowing which one.
     
  14. Thinktank

    Thinktank Senior Member

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    No i've always tested negative, i had pretty much all tests done multiple times.
    Only the Elispot was borderline positive + other suggestive immune markers that indicate infection.
     
  15. Fuzzyhead

    Fuzzyhead Senior Member

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    Only the Elispot was borderline positive + other suggestive immune markers that indicate infection.
    Do you mean on mine or yours?
     
  16. Thinktank

    Thinktank Senior Member

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