Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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And the winner is...

Discussion in 'General Treatment' started by Strawberry, Dec 28, 2015.

  1. Strawberry

    Strawberry Senior Member

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    I got my results back today! Well, for the tests I have had. I still need to do the SIBO and bartonella and something else I think. But for now the official results are:

    CMV high 4.17
    Parvovirus is high
    feratin is high
    B12 is extremely low
    folic acid is very low
    EBV is high
    HSV2 high
    Vit D is very low 21
    NK function is very low 8

    He wants me to try Valtrex, B12 shots, 5MTHF, and 4000 mg of Vit D.

    Crikey!
     
  2. Chriswolf

    Chriswolf Senior Member

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    Congrats on getting some test results back, I know its probably not the greatest of news but at least you now know what is giving you grief and you can develop a strategy to reclaim some wellbeing.
     
    Jennifer J likes this.
  3. Strawberry

    Strawberry Senior Member

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    Thank you @Chriswolf . It is nice knowing I can start moving forward. Two decades plus of my life is too long!
     
    Chriswolf and PandaDarling like this.
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'm in Seattle too and am curious about who your doctor is. If you'd rather not say openly, can you send me a PM?
    Thanks.
     
  5. L'engle

    L'engle moogle

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    That's great you were able to get some results. Do you know if the Vitamin D is the measure of the active form (1,25? I think?)

    I hope it is worth the energy expenditure of going to appointments and you see some real chance for improvement!
     
  6. PandaDarling

    PandaDarling

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    @Strawberry thats fantastic that you have some results you can work on :)
    Did they say how much you need to increase / decrease each by? Would getting B12 from food supplemented with the vitamin help? Or would you need to take them in tablet / injection form?
     
  7. Strawberry

    Strawberry Senior Member

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    @CFS_for_19_years I coughed up a HUGE hairball and went to California to the Open Medicine Inst. and saw Dr Kaufman. It was so difficult physically, but worth every penny. Now I am hoping I can go back to my normal doctor and wave the results in front of his face and get treatment here too. If he scoffs at the results, I have Dr Kaufman's credentials card that I can play. I think I have a full set of aces on this! :D I just don't have the energy to find another doctor, or travel to another hospital! So crossing my fingers this works for me.

    @L'engle I am not sure I can answer, but I will give it my best shot! It says 25-OH, and the optimal reference range is 30-100 ng/ml. I hope that some day soon we can either get someone local for you, or you can make the trip to California. I'm still sad for you that you couldn't go.

    @PandaDarling He wants me to do injectable B12 and 5mthf 15 mg. I eat very healthy, and the very low Bs is a little surprising. So he wants to very aggressively and quickly get me back into a normal reference range.


    I am hoping to get some time to go through ALL the out of range labs and post them here, but I have some other questions I want to ask so it might be next week. It will be nice for me to have all the data here in one place.
     
  8. Strawberry

    Strawberry Senior Member

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    Okay, I'm fashionably late as normal... :D

    Here are all my abnormal test results from Dr K so far. Can anyone enlighten me?
    ***
    Test results summary



    CMV IGG 4.17 (above 1.1 is positive)

    Parvovirus B19 IGG 6.8 (above 1.1 positive)

    Mycoplasma Pneumoniae IGG 3.04 (above 1.1 positive)

    Varicella Zoster IGG 1.73 (above 1.1 positive)



    Hematocrit 46.7 (35 -45 normal)

    Ferritin 288 (10-232 normal)

    Folate, Serum 3.0 low (doesn’t state normal range)



    EBV Viral Capsid AG (VCA) AB (IGG) 5.00 (above 1.1 positive)

    EBV Nuclear AG (EBNA) AB (IGG) 3.73 (above 1.1 positive)

    HSV2 IGG Indes >6.00 (above 1.1 positive)

    Herpesvirus 6 IGG 1:40 (<1:20 past infection)



    Vit D, 25-OH, Total, IA 21 (30-100 ng/ml normal)

    -------------------------------

    Creatine Kinase, Total 19 low (29-143 u/l)

    Arginine Vasopressin <1.0 Low (1.0-13.3)

    Vascular Endothelial Growth Factor <31 Low (31-86 pg/ml)

    Carnitine Esters 14 High (4-13 umol/L)

    No Celiac. :)

    ----------------------------------

    NK Cells, Functional 8 almost low (7-125 LU30)
     
    L'engle likes this.
  9. Forçe e Honra

    Forçe e Honra Senior Member

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    @Strawberry - I know I'm 18 months late, but I am new here, just saw Dr. Kaufman (now 2 doors down from OMI) 2 weeks ago and have a follow up appointment by phone with him on Monday, 8/14...and I have a lot of similar abnormal labs. He also gave me almost all the same meds/supplements you listed. As a matter of fact, I need to give myself a B12 injection in five minutes...

    Anyway, I don't know how to PM and I really wanted to find out how you are doing and how the treatments worked or went or anything...
     
  10. Strawberry

    Strawberry Senior Member

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    Well, for me the treatments did nothing. My pharmacy switched valtrex brands and I reacted to the 2nd one, so we decided since it hadn't affected me positively or negatively that we would discontinue and switched to antibiotics, which also didn't work.

    I think my issue is that I have had this for so long now that the virus or bacteria is no longer active. Or we were going after the wrong one.

    Don't take this in a negative way, I still consider Dr K. to be my doctor and I do think he can help me. I have decided to take a break from his treatments for other reasons. I'm a single mom and have to work full time, and am hoping science will come up with something more concrete soon. I can't afford (physically not financially) to try option after option, and I don't want to have to take care of a port at the moment (and I'm not sure now what it was expected to fix). I do want to re try the B12 shots as I think mine was exposed to light in the fridge and expired.

    Thanks for bringing back this thread, I forgot I ever posted my results! I hope the treatments are able to help you regain back some life. For now I am trying to stabilize my MCS and MCAS.

    Best of luck in your healing!
     
    Forçe e Honra and Kati like this.
  11. Kati

    Kati Patient in training

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    Best wishes, @Strawberry. Hopefully the next set of treatments will have something better to offer for us all.
     
    fireflymd and Forçe e Honra like this.
  12. Forçe e Honra

    Forçe e Honra Senior Member

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    I'm sorry that the treatments didn't work.

    I totally understand your need to take a break from Dr. K's treatments and I don't take it in a negative way. I appreciate your feedback.

    Thanks for your well wishes for healing and I wish the same for you :)
     

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