Mitochondrial Dysfunction Test?

Discussion in 'Fibromyalgia Main Forum' started by meditationlotus, Sep 11, 2008.

  1. meditationlotus

    meditationlotus New Member

    Can anyone tell me if there is a test for mitochondrial dysfunction or mitochondrial failure? I had to stop taking my CoQ10, Acetyl-l-carnitine, and D-Ribose for about a month, and boy could I tell a difference. Couldn't function at all. Didn't realize how much those supplements were helping me.

    I would like to be tested to help with a disability case.

    I appreciate any info anyone can provide.

    What type of doctor gives this test? Do most insurance companies cover the test?

    I may not be able to write back immediate because my computer mouse is about shot. (I have the old roller ball type.)

  2. Catseye

    Catseye Member

    I don't know about any tests, but I think you probably just have a problem with digestion and aren't absorbing nutrients well, that's why you have such good results with supplements.

    Have you tried working on digestion? Cutting out wheat, dairy and junk and eating lots of veggies, trying betaine hcl, etc.

  3. victoria

    victoria New Member

    I cannot remember the name of it, but at the time in 2000 it cost $20,000 and was fortunately covered by her health insurance as she was still working.

    It was basically a biopsy if I remember right... anyway, even tho it showed her mitochondria were not functioning correctly or damaged or something... still took her 5 years to get approved for SSD.

    If this is the type of thing you're talking about and can swing it, I'll ask her... it's really a shame tests like these are not do-able by the average person. I'm betting most health insurance these days wouldn't cover it.

    (Right now I only have hospitalization, and they wrote me out for about 10 years for anything having to do with an ulcer even! Even tho I didn't have it when I first got insurance with them... sorry, don't mean to make this a rant about insurance...)

    all the best,
  4. SkeptikSharon

    SkeptikSharon New Member

    I would also be interested in any tests that can be done on something like that.

    Victoria – How did your insurance write you off for 10 years for anything even to do with an ulcer? Especially if it was not preexisting? I thought insurance was not allowed to do that? I really hate insurance companies more and more each day. Don’t they understand that if they allow us the treatments we need to get better, that we then wouldn’t necessarily have to continue submitting claim after claim after claim and costing them even MORE money?
  5. ardnave

    ardnave New Member

    There's a test in the uk done by a company called Biolab that was developed with Dr Sarah Myhill, a secialist in CFS treatment. If you google her name you'll fing her website which has information about the test and also about how to order this test if you're a non UK resident. Hope this is of some help.
  6. victoria

    victoria New Member

    Maybe it's because of the state I live(d) in, Georgia? Maybe they allow doing that... every state is different as to insurance regulations. Grrrrrr.

    I'm permanently written off for ANYthing to do with the female reproductive system because I have endometriosis, prior to the policy, no grace period even tho I've never had surgery nor intend to and past menopause... and even tho it's not been linked with cancer etc.

    Trying to contact my friend who had the mitochondrial test to ask her what the name of it is again... will let you both know when I find out; may be the same one as Myhill orders?!

    all the best,
  7. neptoe

    neptoe New Member

    There is a test out there by a lab called Spectracell. It is the Spectracell Intracellular Function Analysis. Cash pay is about $350 (I think). They take Medicare and PPO insurance but they do not take HMO. Your PCP should be able to request it.
  8. zoster

    zoster New Member


    I had the Mitochondrial failure test done at Acumen lab here in the UK by Dr Sarah Myhill. It showed severe problems with my ATP production - I cannot recycle ADP to ATP properly - it is going far too slow which is why I run out of strength very quickly on exertion. The translocator protein on my Mitochondria is failing I think it said - I would need to pull out my file to check the result in detail.

    It was quite a detailed report and showed various things wrong with my Mitochondrial energy production and gave an indication as to why.

    I think you can contact her by email through her website.

    Good luck, let us know how you get on.
  9. meditationlotus

    meditationlotus New Member

    All of you gave me a wealth of information. I am going to save this thread for when I get ready to pursue this test. I didn't realize there was so much help available for this disorder.

    Not only am I basically on my back when I don't take these supplements, but extremely depressed. When I take the supplements, I can do more and my mood improves.

    I also have neurally mediated hypotension, and have to take medication and wear compression hose in order to tolerate a vertical position. These remedies don't cure the blood pooling, but help to slow it down.

    To feel improvement,I must do both the mitochondrial enhancing supplements and the medication and compression hose.

    And yes, Barrowinnovations, and have many food allergies. I take digestive enzyems, but find it hard to avoid foods because I am allergic to practically everything, and I have hypoglycemia, so it is a challenge. But I know I need to address these issues too, but just don't know how. If I wasn't so financially strapped, it might be easier.

    Thanks again everyone. The information was thorough.

    And yes, insurance companies are a rip-off. We pay them all that money for coverage, and then when it is time for them to pay-up, they want to keep it all.