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Questions on test results

Discussion in 'General ME/CFS Discussion' started by trickthefox, Jun 10, 2016.

  1. trickthefox

    trickthefox Senior Member

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    Brighton
    I've been getting very frustrated with Dr KDM, i could go into it further but it would honestly be such a long message of the amount of things that have frustrated me

    I just got my most recent test results back, I thought I'd put them here incase someone here has some better insight

    When I asked KDM about the methalation results he said 'oh that means your a low methalator' and I said 'Okay so what should I do about it' he said 'oh nothing, people see 1% improvement at best with methylation... it's a waste of money'

    So why the hell get me to spend hundreds of pounds on the test in the first place?

    I sent an email asking about my negetive reaction to ALA which is also a chelator -questioning if this indicated I had a problem with metals hoping that I'd get a response and I got an email back saying they were all out of office. An hour later, I get an email from the same office with my invoive for the 70 Euro phone consultation.

    Anyway here are my latest test results, if anyone could shed better light on them that KDM that would be helfpul

    C4A - 0.4 (NORMAL RANGE 0.5-1.6)
    Kynuneric acid 2.5 - (NORMAL RANGE 0.7-1.32)
    CD14 - 3495 (NORMAL RANGE 1430-2800)

    GFOL1298A/C - MTHFR 1298A/C POLYMORPHISM - HIGH ACTIVITY
    GFOL-667CT - MTHFT 667CT POLYMORPHISM - MODERATE ACTVITY

    GDVR - FOK1- FOK1 POLYMORPHISM F/F

    GDVR-BSM1 - BSM1 POLYMORPHISM - B/b
     
    TiredSam likes this.
  2. msf

    msf Senior Member

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    I don´t know about the genetic ones (did you ask for those to be done, or did he?) but they first 3 look pretty typical for a KDM patient. I´m not sure you are asking about those in particular, but C4a has been found to be low in Chronic Lyme, Kynuneric acid seems to be increased during the stress response, and high CD14 is supposed to be an indicator of increased intestinal permeability.
     
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  3. Valentijn

    Valentijn The Diabolic Logic

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    The MTHFR mutations look pretty mild too. Presumably C677T is CT (+/-) and A1298C is +/+, which means the MTHFR enzyme is running at about 65% of optimal. 70% of optimal seems to be pretty average (ME patient or not), so isn't really anything likely to require treatment. At most, it might warrant making sure you eat your veggies or take a normal multi-vitamin with folate in it.
     
  4. trickthefox

    trickthefox Senior Member

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    Brighton
    Thanks guys, maybe thats why he said do nothing... Curious as to why taking methyl folate turns me into a zombie, but maybe thats more to do with sulfur intolerence and my leaky gut issues coz lots of supplements give me a bad reacion whereas IV doenst seem to.

    Also what im curious about is the pulsed antibiotcs for the gut

    I was taking pulsed clindamycin for bacterioids - and they came down like presumed, but also my beneficial flora was pretty decimated too and became abnormal as did my bacterial diversity which was normal pre treatment and very bad post treatment, then my streptococous levels shot up from normal to 40% of my gut flora, and clostridium shot up - he now wants to treat those bacteria with antibiotics, im just wandering isnt this like playing whackamole? cause there is no way to supplement alot of this native flora so if i knock it down with a different antibiotic wont that just kill even more beneficial flora and then perhaps another bad will pop up?
     
  5. msf

    msf Senior Member

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    I have been thinking along the same lines, TricktheFox. I don´t think there are any good solutions to the gut problem at the moment, but KDM is trying to do the best he can with the tools available (antibiotics and probiotics). His recent meeting abstract (posted in a recent thread) suggested a possible mechanism by which it may be possible to correct some or all of the gut problems, but it will probably be years before a treatment is available.
     
    Last edited: Jun 11, 2016
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  6. Justin30

    Justin30 Senior Member

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    I ead somewhere as well with immune disorders that the ability of the microbiome to maintain certain colonies of bacteria is compromised. Meaning that the good guys have a problem sticking to the walls of the gut.

    Butyrate helps control the growth of the cells lining the gut, to make sure there’s good balance between old cells dying and new cells being formed. It’s also the most important source of energy for those cells.

    We supposedly have issues with this and mucous and epethelial layer of the GI track.

    CD14 also is found high in HIV patients which is translocation and is thought that in may cotribute to them being sick even after ARV treatment.

    I believe Kyuneric Acid has to do with neurotoxins and may show a correlation in this study for Exitotoxicity in this study

    http://www.hindawi.com/journals/omcl/2013/104024/

    I have know clue about methylation either.
     
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  7. trickthefox

    trickthefox Senior Member

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    Brighton
    can you point me to the recent meeting abstact please :)
     
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  8. msf

    msf Senior Member

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    It will be one of the more recent threads in the ´recent research-ME forum.´
     
  9. msf

    msf Senior Member

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  10. Jonathan Edwards

    Jonathan Edwards Senior Member

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    That seems to me to be the sensible question to ask. Your results look pretty unremarkable and of no known relevance to ME/CFS and I find it hard to see why anyone should have to pay for getting tests like this done.

    That seems sensible too. In the UK I suspect this sort of treatment might be considered worthy of investigation by the General Medical Council. Not that they are a shining example of logic themselves but prescribing antibiotics without any evidence base is not something that is encouraged. Having looked after patients with multiply resistant infections I think that makes sense.
     
  11. msf

    msf Senior Member

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    Thank god KDM isn´t British!
     
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  12. msf

    msf Senior Member

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    I mean, what is the UK´s big contribution to the study/treatment of ME? PACE? And Belgium has Maes and De Meirleir. Seems like one country has got it completely wrong, and it isn´t Belgium.
     
    Art Vandelay, Thinktank, RML and 3 others like this.

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