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Dr. Kaufman - what tests does he do, & is he knowledgable about MTHFR etc.

Discussion in 'ME/CFS Doctors' started by Mary, Jun 27, 2015.

  1. Mary

    Mary Senior Member

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    @jeff_w, @Gingergrrl - and anyone else who has seen Dr. Kaufman - can you tell me briefly what tests he does? e.g., I know he tests for viruses, but would appreciate any other info about testing he orders. I also know he tests for SIBO if warranted.

    Also, is he knowledgable about methylation and MTHFR issues?

    Thanks!
     
  2. helen1

    helen1 Senior Member

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    He tested me for NK cell function, Lymph subset, c.pneumonia, mycoplasma, cmv, hhv, ebv, metabolic profile, histamine, vzv, ammonia.

    He asked me about my mthfr snps, but not about other methylation snps, though he did ask me to send him my snps.
     
    L'engle and Mary like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    Pretty much what Helen mentioned- viral testing (EBV, HHV-6, CMV, VZV, etc) Lyme & co testing, C. Pneumonia, mycoplasma etc. NK cell functioning, lymphocyte testing and whatever specific to your case. SIBO test, histamine & tryptase etc. I was initially tested for MTHFR genes (SNP's ?) but I did not tolerate the methylation supplements at all. Hope that helps.
     
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  4. Mary

    Mary Senior Member

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    Thank you - this helps!
     
  5. Mary

    Mary Senior Member

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    Thank you - this does help. I've had some of that testing before, but not all of it, so this is helping me decide about making the trek to northern California - I'll probably have to bite the bullet ...
     
    Gingergrrl likes this.
  6. jess100

    jess100 Senior Member

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    Mary
    He tested me for all the things the others have mentioned (Lyme, Babesia, Bartonella, B.burgdorferi) as well as thyroid, A1C (for diabetes), iron, vit D (and the usual blood tests) mono, herpes, HME, and maybe a few others. He was very thorough.
     
    Billt likes this.
  7. Mary

    Mary Senior Member

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    Thank you Jess! The more I read, the more I think I should go see him -- I haven't had testing this thorough done before --
     
    Billt likes this.
  8. funkyqueen

    funkyqueen Senior Member

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    Dr Kaufman tested on me:
    - Sibo ( positivity is very commun on MEers)
    - NK function & immunologie
    - MTHFR mutations ( positive for one of the two commun MTHFR mutations seen in more than 90% of MEers, and only seens in less than 25% of " controls" )
    - a large panel of some virus/enterovirus, bacterias (even if a loooooooot was done in my country,he re-test me for some )
    - basics ( cbc, cbp)
    - probably others things i can not remember just right now

    and i gave some of my blood for OMI/OMF's ME Research...i guess they look genetics too.
    I'm really appreciative for their work and devotion in ME Research ...
    I'm really convinced that it will come out positive for us one day !

    http://www.openmedicinefoundation.org/the-end-mecfs-project/
     
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  9. Valentijn

    Valentijn Senior Member

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    Which mutations? C677T and A1298C are equally common in both patients and non-patients, according to the data I've seen. Has something been published?
     
    Ema likes this.
  10. MYSTIC

    MYSTIC

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    I received my last Rituxan infusion in OMI yesterday !
    D.Kaufman tested on me :
    SIBO (strongly positive)
    NK cell Lymph activity
    MTHFR mutations: only A1298C positive
    virus panel :herpes, HIV,EBV,CMV,HHV6,HSV 1+2.....
    CD56+CD16
    CD3+CD4
    CD19 before Rituxan
    CK, glucose
    IL1 , IL2
    IGg, IGa,IGm subclass
    vit D D25 ,mononucleosis,
    ACTH level (undetectable)
    blood sample (18 tubes!!)
    genetic counseling and DNA testing for at risk family members

    cost 3500 $ only for blood test and SIBO

    It seems , complete remission with Rituxan therapy is rare, many patients are in partial remissions and fall ill again a few months after stop.
    I'm only in partial remission too, sad
     
  11. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Since this is at OMI I wonder if it might be one of these (as yet unpublished) studies:

    http://www.openmedicinefoundation.org/completed-studies/

     
    Last edited: Sep 4, 2015
  12. Gingergrrl

    Gingergrrl Senior Member

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    @MYSTIC I think I may have asked you this in another thread but now I can't find it and apologize if I am now asking you twice! Can you explain how you were determined to be a good candidate for Rituxan and what symptoms you had that are now in partial remission? Thank you for any info.
     
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  13. MYSTIC

    MYSTIC

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    @Gingergrrl
    hi, I think that you confuse with another person.

    I will like to give you the symptoms which disappeared but I joined the idea of a member who also treated at the OMI with RITUXAN by D.Kaufman and I think that it would be very dangerous for the quality of these studies in progress in Stanford and Bergen to declare this chronology on the social networks because the psychological aspect of our disease being very strong.

    It would be a shame of ruined these studies and to waste the chance that this treatment can lead for those which did not have the chance and the means of offering it (total costs 30,000 $ !!).

    The psychiatrists would have a joy of finding a fault in the study to decline its veracity !

    I will make you the diary as soon as Fluge / Mella and OMI will have published .

    I can say only that my improvement is approximately 50%.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    @MYSTIC I am not confusing you with someone else b/c you posted in another thread about getting Rituxan, I just can't find it!

    OMI is not giving Rituxan out right now as a study and you telling your symptoms would have nothing to do with the results of the Norway trial.

    But fair enough if you prefer not to discuss and no worries.
     
    Last edited: Sep 6, 2015
  15. MYSTIC

    MYSTIC

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    Hi,
    I do not know all about the criteria of eligibility for the RITUXAN, just that 80% of these patients have a low level ACTH or undetectable and especially a very low level of the NK lymph cells.

    There are other deteriorations which are I think the fruit of their work since two years.
    All patients are not eligible in Rituxan,

    only form them obviously immune are it.

    I am sorry to not be able to say more,

    just than symptoms disappear gradually :brain fog, blurd vision,facility to sleep ,headhache,refresh sleep,joint pain, dry syndrom,...... very very slowly.

    In my case, as of fifth infusion,i noticed that my immune system had been reactivated after only two months
    and half of the
    previous infusion (reactivation of symptoms).

    During this last infusion, I felt as at the beginning the same feeling which did not exist any the preceding ones .

    i think for me the deadline between two perfusions was too long and the immune system had been reactivated before .
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and was just curious if it matched what I had been told re: having active EBV and certain viruses, low NK cell functioning, autoimmunity, etc.

    I am not sure what ACTH would have to do with it and your symptoms are totally different than mine.

    You answered my question and I appreciate it but I have no more clarity on who is a candidate and who is not but I guess this is just my own curiosity and the answers will unfold with time.
     
    MYSTIC likes this.
  17. nandixon

    nandixon Senior Member

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    When you say "ACTH" do you actually mean ADH, i.e., antidiuretic hormone, also known as vasopressin?
     

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