Is there anyone else on this board who has been tested for mitochondrial dysfunction? I've had ME since March 2000, and for the past three years have been under the care of the wonderful Dr. Sarah Myhill. I responded successfully to magnesium and B12 injections on two separate occassions (went from not being able to walk for more than 20 mins and not having worked or studied for 4 years to part-time work and study, cycling and gentle swimming), though relapsed when I came off the injections (took a few months for my magnesium levels to drop, then I'd crash). So, I went back to Dr Myhill before christmas 2006 and had the complete mitochondrial profile test done (£175 for tests, which are done through post, plus £25 for her analysis, letter to your GP etc.). The results came back in January, and my mitochondrial function was scored as 44% of lowest end of normal, which fitted with how I was feeling as I was back on the sofa, unable to work or study or walk very far). The tests include checking levels of red cell magnesium, Vitamin B3, Co-enzyme Q10, tissue damage is measured as Free Cell DNA and a few more biochemical things that are very complicated and I didn't really understand!! The treatment is to give the mitochondria what they need to do their job and rest sufficiently to take the strain off the body and minimise tissue damage. I've been on the new treatment regime for 14 weeks now and have really started to see the results in the past two or three weeks. Treatment includes daily half mil injections of B12 and magnesium, plus vitamin (B3, C, Multi), mineral and micronutrient supplements (D-Ribose, Acetyl L-Carnitine, Q10) and fatty acids (Fish Oil, Borage or Evening Primrose) plus anti-oxidents Glutathioine, Selenium plus mineral tinctures of copper, zinc and manganese. Its time consuming and expensive, but I can feel my body getting stronger week by week. My reason for posting is to ask if anyone is on a similar treatment package, and if so how are you getting along with it??
Maenad, I see it's been a few months since you've posted. How are you doing with Dr. Myhill's treatment protocol? I haven't had those tests done, but I'm taking D-Ribose, CoQ10, L-Carnitine, and oral magnesium. I went into a crash this spring, after being in semi-remission, and I've been on these things for about 10 weeks. My energy is slowly increasing, but it's hard to say if this is contributing. I do notice that it makes a big difference with my wierd heart rhythms. If I forget to take those supplements for a day, they come back--not sure if the improvement is from one of them, or a synergistic effect. Anyway, would love to know how you're doing with it.
Can report good news - it took about three months to really start to notice a change but over the past six/eight weeks I've improved massively - I realised yesterday that I'd been out the house every day for eight days straight, including a couple of long days/late nights. I'm still symptomatic, but can do more before symtoms hit badly. I also notice little things like being able to get up a bit earlier each day etc. I'm going to have the full mitochondrial profile redone in another couple of months and will post the results. So far I'm happy with results, and am sure that if I rested more they would be even more impressive (I find it hard to keep resting once health returns, and am aware that I sabotage the recovery process to a degree)
Hi there - I meant to add that I've been taking a high dose oral magnesium supplement for years but only seem to get results from the injected magnesium. Although its painful to do, using a fine insulin syringe and adding a tiny amount of lidocaine makes the half mill magnesium sulfate easier to inject. Its also one of those things that you get used to quite quickly, and becomes part of daily routine. Also wanted to ask how much D-Ribose you take and whether you take it with caffeine? My treatment plan includes taking it with a small cup of organic coffee or tea twice a day, though a good hour or two away from food/other supplements. Aparently caffeine helps with an aspect of the mitochondrial function, though I can't remember which bit!! Regarding the wierd heart rhythms (aren't they scary!!) have you read the research about differences in heart volume output between CFS and non CFS people? Its fascinating. All best, Jane
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Hi Jane--thanks for posting your results with Myhill's protocol. I've heard that she recommends coffee, though I've been hesitant to add it, since other docs say to avoid caffeine. Might give it a try, though, combining D-Ribose with organic coffee or tea. I take 5 grams of D-Ribose, 2 x day (Now brand powdered form). Thanks for the tip on injectable magnesium. I've been wondering about trying that. I took it years ago, but it might have more of an effect with the other things I'm taking now. Yes, I've seen the Peckerman research on low cardiac output, and have also been following Martin Lerner's and Paul Cheney's work on cardiac issues in CFS. Lerner thinks ppl. with CFS have herpes viral infections of the heart. I'm so glad to hear you're doing better. Are you following her full protocol, as described on her website? Please keep us posted on what works and doesn't work for you. All the best.
I take 5 grams of D-Ribose, 2 x day (Now brand powdered form)
Just wanted to mention that Myhill recommends taking D-Ribose in small amounts through the day - rather than two large doses, six or seven small ones. Aparently its rapidly absorbed and 'used' and body benefits from small and often.
I'm not following the full protocol as I'm vegan so her 'stoneage' diet; high protein and low carb is just not possible for me. I do eat a pretty healthy organic brown rice/loads of veg diet though, so feel fairly confident about food. Only concession I have made is that I've been taking fish oils for a couple of years as the length of my illness plus a history of depression made me think that being fish/omega-3 (EPA in particular)-free for over 20yrs might have had negative consequences. I also continue to drink alcohol, which is a big no no but I feel I've given up/lost so much with this illness that I'm loathe to give up the odd night out/wine with dinner etc. I also haven't been able to buy the infrared sauna/sweat cabin she recommends, though may get that later in the year. Also, regarding caffeine what I do is mix equal measures of 'normal' ground and decaff ground (organic, fairtrade etc.) coffee, so that when I have my two cups of coffee with D-Ribose I'm only getting half the caffeine. I find it helps so long as i don't 'abuse' it and use coffee to get me through the day when I should be resting. I actually find it really helps and I don't seem to pay for it. I can see that those with a caffeine intolerance might struggle though. Its great to hear from someone following a similar treatment plan by the way, and I really hope you continue to feel stronger on it. I'm really pretty amazed at the results I'm getting so far - though the bottom line remains the same regarding rest and pacing and being sensible. Groan!!
Hi, I find this all very interesting. I was diagnosed with hypothyroid, CFS, FM when I was 19. I am now 34. I did okay for quite sometime with on/off problems but then in 2000 I injured my back herniating several discs and then ended up with temporary hyperthyroidism due to thyroiditis and then on came a severe flare of CFS/FM. I have now been unable to work at all since 5/01. I'm very interested in this info. Where is the doctor located?
Thanks for posting your info!
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