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has anyone had a mitochondria test done?

Discussion in 'General ME/CFS Discussion' started by Aerose91, Mar 11, 2014.

  1. Aerose91

    Aerose91 Senior Member

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    And if so, did it provide anything? My doctor wants to do one on me because he said it will show exactly where the blockage is. He also wants to put me on phosphatidylcholine.

    In theory this would give some answers and allow for recovery, im just wondering what the catch is and why more people havent done it
     
  2. xrunner

    xrunner Senior Member

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    If your Dr refers to the Acumen tests, I did those for some time but in my experience it is an unreliable test. In my case for e.g. it never showed the real causes of my mitochondrial dysfunction which was bacterial/viral, mercury and lead.

    Those largely resolved later but it took other tests to find out and different treatments.
    Regarding the phosphatidylcholine.

    If your Dr refers to lipid replacement, I also tried that in iv version but apart from helping slightly with brain fog it did not do much else, that is in my case.

    However, it may help as part of an overall treatment package such as the simplified methylation protocol and whatever else is necessary to remove the causes of the mitochondrial problems which are usually found upstream.
     
    Last edited by a moderator: Mar 11, 2014
    justy likes this.
  3. aquariusgirl

    aquariusgirl Senior Member

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    Xrunner: who gave you the LIpid IVs? I thought you could only get those from Patricia Kane. tnx.
     
  4. Aerose91

    Aerose91 Senior Member

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    I can agree with that.

    Im not sure where he wants to do the tests but he did mention doing some work with mitochindria issues alongside dr myhill. I know she is a respected doctor here so im not sure how valid thay makes it
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Aerose91

    I had three things tested that had to do with mitochondrial function. I can't remember what they were without hunting--except that one was ATP.

    (It was not Acumen's test). It showed low mito function but nothing about causes. You can read here or elsewhere on the internet the recommended supplements, but until you deal with the causes, you are pouring water into a leaky bucket. (IMHO! ;)

    Sushi
     
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  6. Aerose91

    Aerose91 Senior Member

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    @Sushi,

    I completely agree. I guess im wondering if that test will help diagnose the cause. As in, can you back peddle and figure out where various blocks must be coming from?
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    In my case, I was in contact with Rich at that time, and he thought it was related to poor methylation.

    Sushi
     
  8. xrunner

    xrunner Senior Member

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  9. justy

    justy Senior Member

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    My experience with the test (had it done through Dr Myhill at Acumen) was that it told me I was ill, but not why. It showed all sorts of nutritional deficiencies which I took supps for to help the mitos but none of them really addressed anything as far as I can tell. They also did Translocator protein studies which where then supposed to show what was causing the blockages but all I had was some very low level chemical from shampoo, something to do with fats which they couldn't explain or help with and steroids which they said was weird and they didn't know what it meant. all in all spent about £400 plus supps to find out I am sick - I knew that already.

    On the plus side - it showed REAL damage. I could prove to myself and others for the first time in years that it was not all in my head. It helped me to understand just how much I needed to rest and pace.

    If I knew what I know now I wouldn't have done it but would go staright for in depth immune and pathogen testing and try to treat anything that came up. As far as I can tell from these board people who have done that have had the most success. I am going to see KDM soon In an attempt to do this. Of course if nothing shows up I will be no better off, but at least I will know one way or another if there is something we can actually treat.

    Most of the recommendations for mito issues can be done anyway without the test and all the info is on Dr mYhills website re supps, diet, rest and exercise. I do know of a few people who were helped a lot by just reading her website and free e book. They couldn't afford the tests but in the end didn't really need to do them.

    All the best,
    Justy.
     
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  10. ruben

    ruben

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    suffolk
     
  11. ruben

    ruben

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    hello Justy, I don't know much about these tests, but if you have them and they show "real damage" as they did in your case, does this mean that your GP etc will look on your plight in a different way. I struggle very much to work fulltime and it will be very difficult if not impossible for me to work till retirement age. I just wonder how easy it is to say you can't go on working and simply move to being on benefits. Do these test add any weight to your predicament? Look forward to your comments. thanks
     
  12. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I read somewhere else on the forum that someone got these mito tests done and the benefits appeals court didn't see them as valid. Not sure if the person is on here now but I read it a few months ago. Apparently the tests aren't very valid in the medical world or something? Or they would probably be used by mitochondrial disease specialists all over the world but they aren't. The only official test to check for dysfunction is a muscle biopsy but that's only if they think you have the actual disease. They wouldn't do it otherwise because it's expensive. I'm not sure how much Dr myhills test holds weight in the medical world but the fact that the government didn't recognize it says something.

    Benefits wise it's a postcode lottery. I wouldn't just quit work if I were you. I would see what your areas benefit and support system is like first then do so. In my area if I didn't have family and had quit my job I would have probably been homeless because they are so bad at helping people. They strip away the benefits from everyone. People with cancer, diabetes, learning disabilities are getting it taking away or are being refused. You have to be unable to clean or eat yourself before they give you anything. Hopefully your area is better.
     
  13. brenda

    brenda Senior Member

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    Dr Myhill holds no weight with the medical fraternity.

    For my DLA claim, I asked a private osteopath to examine me and give a report (£80). She reported on my physical problems with Lyme joints and mobility issues. I won high rate mobility but cannot say how much the report helped as I was not examined at all by the department.

    I also had the mito test done at Breakspear but can't say whether that helped.
     
    Last edited: Mar 16, 2014
  14. Abha

    Abha Abha

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    Hi Aerospace91 and others,

    I have had the Acumen Tests(Mitochondrial Profile Function Test/Translocator protein studies test too).I agree with what Justy has stated above.The tests are quite expensive...(and the treatment?)...However, as Justy has said, they do show that one has serious problems.From the latter test I remember I had high cadmium levels(fish?.....not smoking as I don't smoke but I suppose passive smoking could have been involved but i always tried to stay away from smoke as much as possible).I also have severe mitochondrial problems, in my case(in my opinion)caused by malathion(organophosphate)that I was in contact in my early life(as Lord Zuckerman stated in 1951 it(malathion/OPs) should be banned!Govts still use it(pesticide/spraying compounds/used in air cabins too) and it has been connected(Kerr/Behan) with ME/CFS).The NHS(re Appeals Court) threw out my claim for DLA some years ago although I presented them with Dr Myhill's letter(35£ then)to back up my case.(nothing in my medical files then re malathion/OP poisoning).Different NHS Trusts treat patients differently so you may be fortunate.Unfortunately I didn't have the info on OPs that I now have.However in the UK there are no NHS consultants/Clinics that wish to deal with OP poisoned/contact patients.If there are I would like to know about them.The Medical Director for my Health Trust informed me that there are no such experts in the UK!
    There is a lot of good advice on these boards and you can contact people with a pm.All the best...
     
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  15. brenda

    brenda Senior Member

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    For DLA, it is not a case of getting the right diagnosis though of course test results will help. It is proving that you have the physical problems they award you for ie cooking a meal, ability to walk without after effects, ability to dress and bathe. If you can prove these with various reports even from people who know you, perhaps with videos to back it up then I think that they would have a hard time to deny benefits at an appeal. I am waiting for an assessment by social services regarding personal care for which I do not have enough medical evidence, and hope I will then be able to make a successful claim for higher level care instead of low level.
     
    justy likes this.
  16. justy

    justy Senior Member

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    My Gp thought they were 'interesting' another that it was 'way over his head'. They showed serious CO Q 10 deficiency Co Q 10 can be prescribed on the NHS but they refused. This report has never held any sway with the NHS, and yet my own GP takes an interest in Dr M's work and is broadly supportive, though doesn't supply much help. The surgery were happy to show me how to inject B12 and provide sharps bin, but wont prescribe b12 or needles (I buy these privately)

    In terms of benefits I had ESA (work related group - what a laugh!), but as my husband works (although on low income) this was stopped after a year. You could get income related ESA if no other income in your family, other wise its the one year rule for all - unless you can get in the support group - not easy but doable. I didn't understand it at the time, otherwise would have fought for support group.

    DLA - Dr M's report helped me enormously as did the extremely rigorous and detailed report I wrote myself - my husband also worte for the form about my condition. I included copies of all test results from Dr M etc. She charged me £45 to write the report. I got high rate mobility and middle care for a couple of years with no medical required. I was rea ssesed about a year ago and had to put in new form etc - I used the old one as a basis and paid DR M for another in depth report and included all test results again. I had improved slightly, so lost care altogether but retained mobility until 2018 (I use a wheelchair for anything longer than short walks outside).

    The most useful thing I did as well was join the website Benefits and Work - they have very detailed guides availbale to members to help fill out forms and great advice and forums for memebrs to ask questions.

    http://www.benefitsandwork.co.uk/

    If anyone wants to ask me any questions on how to successfully fill out the forms I am more than happy to help if I have the energy at the time. The best advice is to not try and fit your illness to the form, but the form to your illness and include lots of pages of extra information - at every question describe exactly what you cant do and need help with - it doesn't matter IF YOU DONT GET THE HELP, IF YOU NEED IT YOU SAY SO (sorry caps lock)

    EG I could dress myself and shower sometimes without help, sometimes with. BUT in order to be a normal functioning in the world woman with a job I would need to be able to manage daily grooming - washing hair and blow drying, shaving legs, underarms etc, applying make up. Choosing outfits and making sure they are clean, and ironed. I could not manage this every day so I said so.

    Another section asks you about the things you would do if you had help. Go to town! I WANT to go swimming three times a week, in order to do this I would need someone to take me, help me shower, wait with me, help me dress and bring me home. I WANT to be able to go to yoga, same thing. The library once a week - I would need someone to drive me, stay with me, push my wheelchair and bring me back. We have to be honest on the forms about the reality of our illness. We so often don't say how bad it is. On the question can you walk upstairs? well yes, physically I can, but most days it left me exhausted afterwards, it would take me a while, I would have to rest, hold onto a support. stop at the top to regain breath, I actively avoided the stairs and needed my children to run up and down stairs for me many times a day - if you need someone to do this for you, say so! (luckily I don't have this problem now). So we have to remember not just to tick yes I can, because we cannot do it LIKE A HEALTHY PERSON WOULD.

    I alos repeated myself over and over again, explaining exactly what steps would be necessary for me to be able to do this and explaining in fine detail what help I would need to complete a task such as cooking a meal.

    All the best,
    Justy

    sorry, ranted on a bit now... you get the picture?
     
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  17. brenda

    brenda Senior Member

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    I joined the benefits foum that Justy mentioned and found it well worth the joining fee.

    I would also add to what Justy has said that, l kept repeating the same things and going into great detail. My knee swells at times, and l said that when l walk l compensate using other muscles so am less stable, and although l can walk albeit more slowly, l am apt to do so using adrenaline and have taught myself to ignore pain, so l suffer after afterwards and am couch bound and cannot repeat the walk that day.
     
  18. justy

    justy Senior Member

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    @brenda, you raise a good point about repeating an activity. I think there is a case for saying - and I think this is allowed that if you cant repeat the activity within ga reasonable time frame realiably then you should be judged to not be able to do it at all.

    For example I can physically walk, but can really only go for a short walk once a week - if I tried to do this every day, or twice a day ( for example to walk from the car park to the office in order to work) then my condition would seriously worsen. Being able to do something once a week does not constitute as being able to do it. Therefore I use a wheelchair and am judged as not being able to walk as I can not do so reliably and repeatedly.
     
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  19. brenda

    brenda Senior Member

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    Yes l found out this information before l put my claim in fortunately. I did not even think l would qualify which l have for life.
     
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  20. gregh286

    gregh286

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    hi,
    i just got my results back for mito function test.
    Scored 1.03 on a 1-3 scale.
    I am a mild CFS sufferer which is about the right score.
    It showed low levels B3, copper, zinc, (I had good Q10 @ 2.09 umOL)
    At least now it gives me something to "attack".
    It is an excellent report for £310. I recommend it.
    Also, I suggest MMS, clean out the bugs.
     

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