Dr. Sarah Myhill's mitochondrial tests

Discussion in 'Fibromyalgia Main Forum' started by sick~kitty, Jun 18, 2008.

  1. sick~kitty

    sick~kitty New Member

    I was considering writing to Dr. Myhill to ask if any doctor or lab in the US is doing the detailed mitochondrial testing that she pioneered in the UK. I was pleased to see that she now offers a service whereby patients can have blood drawn here in the US and air-mailed to her office for the tests. From there the blood is sent to two different labs for the various panels. On receipt of the lab reports, she'll forward them to a patient's physician along with her recommendations on supplements. I think the total cost is around £250 to £300.

    I'd like to hear from anyone who has had these tests done. Was the information provided helpful? Did you see an improvement from taking the recommended supplements?
  2. sick~kitty

    sick~kitty New Member

  3. sick~kitty

    sick~kitty New Member

    Either Dr. Myhill's panel or anywhere else?
  4. free_spirit

    free_spirit New Member

    Hi Kitty

    I have had this test and swear it is the best £240 I ever spent!

    Dr Myhill's report was detailed (over 11 pages long) and she was able to show mitochondrial dysfunction, which vitamins and minerals I was deficient in, how these would tie in with my symptoms and recommend treatments to correct.

    The mitochondrial function score (how little energy I have) was closely matched to how I am on the disability scales (good proof of disability for benefit applications perhaps?)and the Cell free DNA score showed my Doctor how ill I actually am (which felt good as his disbelief in ME/CFS is only matched by the lack of care he gives me). For the first time ever he is interested in me and my condition and is ordering the tests which Dr Myhill has recommended!

    It is early on yet for me to say if the supplements are having a good effect (have only introduced 2 at the moment) but, I can say that the D-ribose is ROCKET fuel lol. A noticed improvement is with my shortness of breath. Before I could barely climb the stairs without struggling for my breath (by the end of the day I would be on my knees dragging myself up) but with the D-ribose, it is so much easier. I have gone from chairbound to pottering around my house, doing light housework, short trips outside without my wheelchair (yippee).

    There is something 'stuck on' my DNA which is causing the dysfunction and I will need further tests to discover what this is. I can't do this yet as I do not have the money.

    I am very happy with Dr Myhill. I am sure I have read somewhere that there are labs in the USA where you can get this done. I will have a look around and see if I can find where I read it. Sorry I cant be a bit more helpful right now, I am waiting for the CoQ10 to reach my brain lol.
  5. zoster

    zoster New Member

    Hi sick kitty

    I had the test done and it showed my Mitochondria are not producing enough ATP (chemical energy). I had high malondealdehyde and a significant increase in cell degradation. It showed a blocked Translocator protein in my Mitochondria and Nickel associated with the double strand cross linking in my mitochondrial DNA.

    Further testing recently has shown a major problem with a toxicity of Nickel which has associated with my DNA.

    I also had many vit and min deficiencies even though I have been taking supplements for a long time. I had low co Q10 levels and very poor vitamin E status. I have taken all of the supplements reccomended but became so ill on themI just couldn't tolerate them.

    I am wondering if an infection migjt be gobbling up all my nutrients and reducing my capacity to detoxify. I have low amino acid levels so I've added those in and started Glutathione to try to get the Nickel out. Oh and I'm doing saunas.

    Still very poorly. I'll keep going until something helps.

    Best wishes
  6. sick~kitty

    sick~kitty New Member

    Zoster and Free Spirit - Thanks for the detailed replies. Did the results have any info on Vit D deficiency? I may have more questions later - I need to go back and re-read all the info on Dr. Myhill's website. Over the years, I've tried a lot of supplements. Some have been at the recommendation of doctors, others based on my own reading. A lot of them seem to be hit or miss. They help some people, but not others. It would be very nice to have more of a roadmap. Of course I realize that the mitochondrial disfunction is only part of this illness. After 30+ years, I no longer expect a cure, but every bit of improvement is a huge blessing. :)
    [This Message was Edited on 07/08/2008]
  7. sick~kitty

    sick~kitty New Member

    Free Spirit, I'm so glad that your doc responded! For 18 years I've been fortunate enough to have a doc who pays attention to her patient, not just the test results. She told me on my first visit that even if she didn't know about CFS, she'd realize something was wrong with me.

    CoQ10 is a godsend for me. It seems to have a cumulative effect for me. I may not notice it I miss it one day, but skip it for a few weeks and I definitely decline. I'm probably now about the same point you are since you've added the D-ribose. There was a time I could barely sit up for an hour. Thank God that's no longer the case!

    If you do run across the US lab info, I'd appreciate it; though I suspect that Dr. Myhill's interpretation of the results might be as important for my doc as the test results.

    [This Message was Edited on 07/08/2008]
  8. zoster

    zoster New Member

    The mito test didn't include vit d - I had it done through another lab which showed a very low level of 25OH vit D, but taking Vit D made me very ill. Being in the sun makes my pain worse also and my brain more foggy.

    Let us know if you go for it and how you get on.

    Everything I've taken so far hasn't helped me which is hugely fraustrating. Hopefully you would get on better with the treatments, I do seem to be in the minority as I hear others usually do well with them. I'm really hoping the Glutathione will help me.

    I am glad I had the mito function test because it did show why I have no energy, this Nickel problem seems to be difficult to get rid of but I'll keep at it! I don't know where I got all the Nickel from!

    Take care

    [This Message was Edited on 07/08/2008]
    [This Message was Edited on 07/08/2008]
  9. sick~kitty

    sick~kitty New Member

    Zoster - If I remember right, one of the things that I did along the way was injections of glutathione and ATP. They did help.

    One thing that makes a big difference in nutrient absorption is intestinal health. I take large amounts of probiotics and am reading up on "prebiotics" - the foods that best support the growth of the healthy bacteria in the intestines.

    Guess I should clarify a bit - when my thrush flares up I take several probiotic capsules a day until it clears up - then I go back to 2 a day. It's important to take the most broad-spectrum probiotic you can find. Somewhere I've got a link to the best one I've found (recommended by a DC on another board.) I'll order some of that once I take up the rest of what I have.

    IT sounds like Vit D doesn't agree with you. I'm taking 2,000 iu of D3 right now. It helps some with blood pressure and does wonders for my complexion. I'm not sure what else it may help, but it's cheap, not dangerous & I tolerate it, so I'll keep taking it.

    The nickel surprised me! I've only heard of it being a problem with jewelry. I googled for "sources of nickel toxicity" and was surprised to find it's in most plant foods and drinking water - also that some quantity is necessary for certain metabolisms, and that high quantities are found in food grown in contaminated soil. Not much help, I know. I hope the sauna and glutathione help you shed it.

    Where are you taking your saunas? I've read several places that sauna is the best overall detox method.I did some several years back in a doc's office, and they did seem to help. I just couldn't handle the 80 minute drive to the office. I want to buy a home unit. The Heavenly Heat model seems to be the safest from the standpoint of MCS, but it's also more expensive than others. I keep hoping to find a HH model used that will fit in my space. The far infrared models are much less debilitating to me than the straight heat type. (I sweat at a much lower temperature.)

  10. mbofov

    mbofov Active Member

    sick-kitty - I'm interested in Dr. Myhill's tests also. I e-mailed her office because it was going to cost over $200 via FedEx just to get the blood samples to her office within the 48 hours she prescribed - additionally, she wanted them by noon of the second day. It was going to be prohibitively expensive, and not to mention iffy whether she would even receive the blood samples in time (I live in California), also there may be a time delay for the package to go through customs there.

    Anyways, I got an e-mail back from Dr. Myhill's secretary the next day saying she was changing the procedure for submitting the blood samples. Now they are to be sent directly to the two labs she uses, which increases the time allowance for transit of the blood samples from 48 hours to 72 hours. I called FedEx again and was told they could do a one-pound package priority to Wales for around $80.

    Fortunately, one of the tests can be done in the U.S. - Myhill's office said the one for CoQ10 can be done at Genova Labs (formerly Great Smokies Lab), so it looks like you only have to pay for one priority shipment to Wales.

    It's very important to look at the website and read the whole protocol about how to package the samples, etc.

    Anyways, with Dr. Myhill's fee for her report, and the FedEx charge, and the Genova Lab charge (and the charge for getting blood drawn to send to Genova Lab) and the charge in Wales for the other lab tests, I'm just guessing the whole thing will be around $500 - $600. Also with the weak dollar now, Dr. Myhill's report which costs I think 50 euros will be more in U.S. dollars.

    It's a lot of money, but these tests do seem very important. I e-mailed Dr. Myhill's office again to get a price on the other lab cost (without the CoQ10 test to be done in the U.S.) and will post when I get that. It's incredible, like so much of U.S. medicine, that these tests are not available here. We are just so backwards in so many ways --

  11. mbofov

    mbofov Active Member

    ooops -- I misspoke in my post above. The cost of Dr. Myhill's report and lab tests are not in euros but the British pound. I just checked and the exchange rate is almost 2 to 1 - one pound is worth about $2.00, worse than I thought.

  12. sick~kitty

    sick~kitty New Member

    Mary, thanks for the information. I've had some other things come up lately, so I won't be doing the testing just yet.

    A weird thing about medicine is that it does vary a lot from one country to the next. I don't mean the treatment available, but rather the concensus about just what is the best treatment, necessary testing, etc. I don't doubt that the best care for 8 different problems would be in 8 different nations, but I'm not sure that even a medical expert could identify which is the best in any given field. That may come from hindsight.

    Anyway, enough rambling for now. ;~)

  13. free_spirit

    free_spirit New Member

    Hi Kitty

    Sorry for the delay in getting back to you, I had a crash after coming off my meds for some hospital tests. I found the following article by the oneclick group which maybe some help to you. http://www.theoneclickgroup.co.uk/news.php?start=2020&end=2040&view=yes&id=2428#newspost

    Scroll down to the very bottom for details of testing.
  14. viralfree

    viralfree New Member

    FreeSpirit -

    Thank you for the article, it, along with the linked citations were very informative. For the past year+ i've been trying to find a good source of mito information re: ME/CFS. Most of the data is focused on severe childhood mito diseases or genetics.

    MBOFOV -

    Did Dr. Myhill's office indicate if they will interpret the CoQ10 test performed in the U.S.? For me, the tests have no use unless they are interpreted specifically for an ME/CFS profile and in tandem w/all the tests.
    Thanks for your help.


    [This Message was Edited on 07/29/2008]