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My Dr Kogelnik Blood Test Results

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Scavo86, Sep 11, 2012.

  1. jimells

    jimells Senior Member

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    northern Maine
    Hahaha! Yes, I've been to my fair share of useless 'specialists'. (I think in the US they specialize in overbilling.) And you probably would've had a more interesting conversation with your newsagent!
    ukxmrv likes this.
  2. clive powney

    clive powney Senior Member

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    Rich,

    I am no doctor or have any medical background - so I only understand this in general terms. I have tried the methylation protocol (i have low glutathione ) for 6 months and had no effects whatsoever. I am in awe of your understanding and wilingness to help sufferers with this disease. But how can this all be translated from theory to practice? i.e how can we prove individually that we have methylation blocks and if we do, which part of the cycle is failing. Then what can we test at base level of what needs to improve , use effective treatment and measure for any improvements , revisiting and retesting when things either improve or do not. Where can we get this all done?
    I am sure you are more than aware it is very frustrating (in many countries) having to do this (and the many other hundreds of treatment theories) blind, and just waiting for something to happen and when it does or doesn't , having nowhere to get advice.

    Hope I haven't been harsh as I know you are one of the few people who are actually trying to help us all

    Best wishes

    Clive
    merylg and Kati like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Clive,

    You can get a methylation panel here:
    http://www.europeanlaboratory.nl/

    And it will give answers to many of the questions you raised. You do need an M.D. to sign the requisition and then someone to draw the blood. I know that this can be a problem in the UK.

    Best wishes,
    Sushi
  4. clive powney

    clive powney Senior Member

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    Thanks for this sushi - and this is no-one in particulars fault, but I would again be sticking a pin in the donkey. I havent got a clue whether I should spend another shed load of money on this route, or Dr Enlanders route or Dr K's route or Dr Cheneys route or Dr Demeliers route or the parasite route or lyme route etc etc etc etc etc etc etc. It has been over 10 years now and I have tried so many things (without any success) that all I feel so far is that a lot of people have made a lot of money out of me (and everyone here) and all that has happened is I have got gradually worse. Even if some of these things work there is no road map as to which way one should go. There are so many cul-de-sacs and u turns - surely everyone here must be feeling the same.
    We all have very similar symptoms and it seems to me that there are sub groups of this disease (probably 10 or more) but which one and which treatments goes with each ???? This seems to be the failing point which doesn't seem to be being addressed.

    rant over

    Clive
    merylg likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think you said that very well! We all know what cul de sacs look like--when we reach the end of them!

    It is very hard to try to identify the characteristics of a patient sub-group which "looks like me." and then figure out what treatments are helping those patients. And even if you do, it is still a gamble.

    Sushi
  6. richvank

    richvank Senior Member

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    Hi, Clive.

    Sushi has already posted the lab in Europe that offers the methylation pathways panel. That's what I recommend running to see if you have a partial block in the methylation cycle.

    I'm sorry to hear that you have not experienced a response from the methylation protocol. There are some possible reasons for this that I have identified, and have discussed in another post, quoted here:


    What are some possible reasons why a PWME would experience no response from the methylation treatment? One obvious possibility might be that the person does not have the vicious circle mechanism described above. Though this mechanism appears to be fundamental to the pathophysiology of ME/CFS, there may be some people who have similar symptoms but do not have this vicious circle. This is one of the main reasons it is helpful to run the methylation pathways panel (I refer here to the biochemical panel, not the genomic panel with a similar name.)

    I suspect that another possibility is deficiency in one or more of the essential nutrients for the methylation cycle and related pathways. There are several vitamins, minerals and essential amino acids needed to support this part of the metabolism, and many PWMEs have been found to be deficient in some of them. Those who have hemopyrrollactamuria (HPU) are a subset of this group. Again, testing is available to determine whether there are deficiencies. This includes direct determination of the levels of the nutrients in the blood, measurements of certain enzyme activities that are specific to particular nutrients, and inferring deficiencies from metabolic tests (such as urine organic acids and amino acids in the urine), hair mineral tests, and essential element tests in the urine. The interpretation of hair testing is not simple or straightforward and requires considerable understanding and experience. Testing for HPU is also available.

    Another possibility is high body burdens of one or more toxic metals, such as mercury, that are capable of blocking enzymes in this part of the metabolism. Testing is available to look for these in urine, blood, feces and hair, and chelation may be needed if the levels of the toxic metals are high.



    No problem concerning being "harsh." If I had had your experience, I would probably be pretty "harsh" myself. I hope this helps.

    Best regards,

    Rich
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  7. clive powney

    clive powney Senior Member

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    Rich and all,

    Thanks so much for your time it is much appreciated.
    Being through the experiences and like so many here, after so many years of trying everything, it comes down to balancing time , money and effort against probability of recovery.
    Looking at your assessment above there seems to be a lot involved - usually all the testing is quite expensive. And once you start down a route it is quite difficult to halt it part way, as you feel you are not giving yourself a chance.
    From what you are saying , the following would be involved - I have no idea of the most of the costs.
    1. Initial methylation panel and subsequent retesting (estimate 3 tests in total at £300 each )
    2. Vitamin tests £???
    3. Hair mineral tests £???
    4. Urine test £???
    5 hpu test £???
    6 a medical consultant to interpret and consult over the term £1000 ? (that is if I can find one in the uk - if not I will need to add the cost of flights - a further £600???)
    7 toxic metal tests £????
    8 the cost of any treatment £????

    I suspect this lot would be £4000 - £5000 in total??

    If I did this, what are the chances that I will find what is wrong and recover??
    Other doctors have totally different regimes like I said before and they are confidently suggesting how to recover - but where do you place your bet when you have a 20 horse race and you have already backed many many losers and your money is running out?? And you cannot even be sure that any one of the 20 horses in the race is actually going to get over the finishing line!!!

    I have probably spent well over £10000 in the last 10 years and have got nowhere - it is SOOOOO frustrating especially now that I have had to retire on health grounds, and have had a family to support through my whole illness.
    Sorry to whine but I think I am expressing the frustrations of 000's of individuals.

    Again I am not aiming these frustrations at anyone in particular , it is just nice to get them out.

    Anyone got any views on the above???

    Clive
  8. richvank

    richvank Senior Member

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    Hi, Clive.

    I'm sorry that your expenditures in the past have not paid off.

    Running a methylation pathways panel would tell you whether this is something worth pursuing. If it comes up negative, you won't need to do the rest. If it comes up positive, you will know that this is something that needs to be corrected in your case, and you wouldn't then be running in the dark. Most non-responses to the methylation protocol so far are due to other deficiencies. You could try testing for them, or you could just do additional supplementation with B-complex and a multimineral. The latter might be worth a try, given your experience so far, and shouldn't cost too much.

    I wish I could give you a guarantee, but I can't. Running a limited number of tests can be very helpful for defining the issues.

    Best regards,

    Rich
  9. anniekim

    anniekim Senior Member

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    Scavo, may I ask does Dr K test for Lyme with his preliminary blood work. I noticed in your blood work that you kindly shared Lyme wasn't tested. Has Dr K shared any thoughts of his on Lyme?

    Thank you and also for sharing what you are doing. I live in the Uk too and have had m.e now for 14 years. For the first few years I was moderate and spent money on some alternative therapies as that seemed all that was available at the time. I have been severe for the last 8 and am now too ill to travel overseas (am housebound). I wish there had been docs such as Dr K when I was well enough to travel rather than waste it on hopeless treatments. I think it is great you are seeing him and I appreciate hearing how it is all going.
  10. Timaca

    Timaca Senior Member

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    Scavo86~ I am interested in what Dr. K had to say about your HSV1 results. My HSV1 (run at Quest Nichols lab) is also high (IgG >8.0; Igm 1:20). So I'm interested to "meet" you since we have similar HSV1 results.

    I wonder if your Cpn IgM is a false positive as you don't have any IgA or IgG. For me, I've had high IgGs and IgAs, but no IgM.

    Did you start on Famvir?

    Best, Timaca

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