Chronic Fatigue Syndrome & Mitochondrial Dysfunction

I have been seriously disabled by CFS for 16 1/2 years, though have been steadily getting better in the last six, due to avoiding stress, honoring my energy envelope, and taking wellbutrin.
My most disabling symptom is orthostatic hypotension, which manifests as not being able to stand still for more than a few minutes, without have a relapse the next day.

I read Dr. Myhill’s research and web page, and also on the recommendation of a friend, began taking NADH (as I understand it, a more expensive form of NAD). THE NEXT DAY, I felt an improvement that has lasted for the last three months. I take 5 mg (recommended dose is 10-20mg) daily. I’m also taking D-Ribose and find it helps, as well, though not as dramatically.

I did manage to get rid of my CFS by taking lots of good quality vitamins, and going on an 80% raw food diet. It took several months, and after that my immune system was very weak for a year or more after that.
The reason why the raw food diet is supposed to work is that the same mitochondria that struggle to produce energy with CFS also must reconstitute enzymes that have been broken up when cooking (a cooked egg gets hard because the enzymes are scrambled). A healthy body can do it no problem- but it takes energy. Eating raw food indirectly provides the cells with more energy to repair themselves. Magnesium supplements were important to me in keeping up my energy.
I am basically healthy now, but the raw food diet is so easy (simply wash sprout dishes, etc) that I am staying with it. The easiest raw foods to have on hand are things like lentils to sprout, and raw sunflower seeds- as well as of course whatever vegetables you can easily get. I counted yogurt and home made sauerkraut as ‘raw’ also.

I wonder where the line is between actual mitochondrial DISEASE and CFS or Fibromyalgia? My daughter and I have “mito”, as confirmed by tests; my mother has Fibromyalgia (she’s never been tested for mito). The symptoms are so similar. Will the distinction between the two or three dxs ever become completely blurred? For more info re: mito, go to http://www.umdf.org or http://www.mitoaction.org.

Mitochondrial dysfunction has also been linked to insulin resistance. I think the hard part isn’t going to be figuring out the test for mitochondrial dysfunction, but rather what that dysfunction actually means, since it will probably be an issue in more than one disease system.

This seems to be something that has come up quite frequently for the last few months. It is definitely interesting & sheds some light on quite a few symptoms for us and other conditions. I am hoping to find something for this ASAP so I can get healthy & lose weight (in that order). It would sure be nice to show all those people that think FMS is caused from being overweight that it was actually the other way around all this time.

I have suffered with both CFS and FMS for years. My doctor told me to start taking epsom salt baths regularly, to absorb the magnesium from the salts. It works! I have less pain and more energy. I have incorporated extra magnesium supplements into my diet. The only drawback is that if I take too much magnesium, I have loose stools.

Co Q 10 changed my life!
I had used it at times since I’ve had CFS, but didn’t notice a huge difference, just that ‘maybe’ it helped a little bit. But I’d only taken a low dose. 30mg to 50mg. But then I took a much higher dose of it and it made a huge difference. On 150mg I felt surprisingly good next day, but got bad insomnia, so cut it back to half that dose. At the 75mg it’s really had a good impact. I might take the higher dose sometime to see if I’m better able to handle it now. My whole sleep routine changed. It seemed to reset my sleep/ wake cycle for the better! Going to sleep earlier and waking earlier, and feeling more refreshed. Great! I still have CFS, but the Co Q 10 really made a difference in a major way.

THe above comments are interesting. I have given a lot of thought to raw foods, starting NADH and adding more C0Q 10. As of now I am on so much…stuff. I am very encouraged by the Co10 comment from Juliet

I do feel better when I take Magnesium, but now I am encouraged to take an Epsom Salt Bath. Isn’t that an old remedy? Interesting.

Have you taken these supplements? Yes, I think the Ribose is mildly helping if at all. The LCartinine…not sure. Magnesium Glycinate, I think helped. Have you undergone specific treatment for mitochondrial dysfunction? Just supplements that were mitochondrial enhancers in the beginning of my treatment. To be honest, I do not think it made much of a difference to me.

Hi – I also take NADH, ribose, and Dr. Teitelbaum’s fatigued to fantastic vitamin mix = they all help, but to my surprise, it is the NADH that I notice gives me an immediate boost – it is also involved in mitochondrial function

Jessica,

There’s a lot of work going on now to see what role mitochondrial dysfunction plays in these conditions. It’s becoming clear that it’s probably a major component for many people. It would be interesting to have your mother tested, to see if she has the same underlying problem as you and your daughter.

you lucky people! i am suffering from cfs for the past 30 yrs.my husband thinks i am lazy and does not believe that i am upset.a sychiaterist is giving me prozac ,two daily .has helped me only a little and am having sleep dissorders (terrible) i am using the computer to communicate with somebody for the first time.

I had the ATP Profile test done a few weeks back. I was so confused as to whether what I was feeling was real or whether it was all a trick of my subconcious. When I felt unwell, I ‘knew’ things weren’t right. When I felt well, I doubted the unwellness.

To be honest, I had been preparing myself to find that everything was fine, and that the problem lay in my head. Illness aside, one of the worst features of CFS is the character assassination that takes place, by others and within oneself.

The results came back on Friday. As I read ‘these are extremely poor results with a very high cell free DNA’, I was overwhelmed by an emotional storm: Horror, relief, fury, despair, hope..

I’m afraid it’s too soon to comment on whether the supplements etc are helpful as I haven’t really digested the results let alone had chance to progress anything. There are significant deficiencies in various elements which support the mitochondria, I’ll be taking a cocktail of Acetyl L-Carnitine, D-ribose, Co-Enzyme Q10, Vitamin D – plus injections of magnesium and B12 if my GP can be persuaded to change her rather rigid attitude.

I don’t expect a ‘cure’ from the diet regime, the supplements and injections, I just hope for an improvement.

More than anything, it’s a tremendous psychological relief. I no longer have to allow room space for the little voice that kept whispering ‘you fraud’ whenever I found myself in the situation where I had to tell people I wasn’t well or make that call into work to say I couldn’t make it that day.

I had a phone call today from my brother asking about the results and taking an interest. All I can say is that it no longer feels the same lonely road it did.

I very much hope that this test becomes a routine test for all people with CFS, not just those able to pay. So people aren’t left to suffer the slings and arrows of the outrageous fortune that is mis-diagnosed ‘illness belief’.

Dear Starlight,

How rude of me not to comment on your situation. I’m so sorry, it was taking all my concentration to compose my post.

How awful to have someone you share your life with think you are simply being ‘lazy’. You must feel horribly isolated. Unfortunately, yours is not a unique experience. Luckily for me my partner has been largely supportive. Of my blood family though only my mother was prepared to believe there was something going on that getting more active wasn’t going to cure. My boss thinks I’m depressed, my colleagues think I’m swinging the lead as does my father.

Meanwhile, having been ‘diagnosed’ by leading CFS pyschiatrists in the UK, I am on the waiting list for a second course of CBT (what a joke) having resisted my GP’s urging to embark on a course of anti-depressants.

I’m sure nearly all people diagnosed with CFS, if not all, will have very similar stories to tell.

Are you UK based? Have you tried getting in touch with your local ME/CFS support group for advice and support? One of the UK ME sites has a helpline you can call to talk to someone. I’m sorry, I can’t remember which one it is.

All the very best,

Sue

I have had CFS fro 12 yrs following a severe viral episode. For 2 yrs my quality of life was poor, no day-night rhythm, jusst drifting in and out of sleep most of the time, able to read a paragraph while lying flat on my back then going to sleep for a while. having a shower, cleaning teeth, having a daily life of any sort was very difficult. Going out of the house to attend to my daughter’s needs at school meant several weeks confined to bed afterwards, with even more sleep than usual. Food was whatever was the easiest to pick up. We had a housekeeper for the 1st 5 yrs of my CFS.

2 yrs in it was suggested I take Co-Enzyme Q10 by the owner of a health food shop, after trying ginseng caused a very bad reaction. My 1st 50gm capsule changed my life. 30min after taking it I was able to get up and take a shower. I can tell when it runs out because I start repeatedly yawning. This now meant I had enough energy to have a shower every day, wash my hair when needed, have 3 meals a day. I switched to 75mg capsule, then 150mg caps. Each increase in dose meant the effect lasted longer. Due to the expense here in Australia, I now get this on the internet from USA, where my husband discovered larger caps for sale. I now take 2 x 400mg caps a day – 1 on waking and 1 4-5hrs later. If my day is a very long one, I take an extra 100mg cap in late afternoon. If I take this last dose on a not so busy day it keeps me awake. This is a very high dose as far as I am aware, but the quality of life it gives me is worth the risks of side effects, whatever they turn out to be. Without the Co-Enzyme Q 10, I would spend most of my life in bed. My thinking is also affected by the CFS and CoEnzyme Q10 helps with that too, giving me more energy for my brain – the simplest way I can put it.

I take a trycyclic antidepressant about 3pm which helps control my emotional stability and gives me a day/night rhythm. I have been told by a Professor of Infectious Diseases ( Dept head) that my use of CoEnzyme Q10 is unique in the 300 or so patients he has seen. He suggested I do a double blind test on myself. I haven’t done that yet but I have taken a 100gm cap thinking it was a 400gm cap and wondering why after 2hrs I was unexpectedly very tired and couldn’t work out why for some time.

Carnitine made me worse.

I also take a multivitamin and Vit E cap

What is NADH please?

I hardly know where to begin!! I became ill after I gave birth to my 3rd child 8 years ago but managed to keep going until I could no longer function and became bedridden for 6 months. Long story short, after ruling out all other possible medical explanations (6 specialists later), I finally had a doctor who looked into a possible adrenal tumor and from that point on I began to do my own research and 2 more doctors later I know know that I suffer from adrenal burnout. Well essentially my entire endocrine system is on strike. I have hypothyroidism, a tendency for hypoglycemia, severe insomnia, weakened immune response. All of these conditions have culminated in an energy crisis or CHRONIC FATIGUE.

Because of my nursing background and my unwillingness to be dismissed or told to “come back when I have a real disease” from various experts, my efforts led me to a great doctor named Dr. Stephen Sinatra. He is a board-certified cardiologist and assistant clinical professor at the University of Connecticut School of Medicine. He also is a certified nutrition and antiaging specialist. He calls himself an ‘integrative cardiologist’. He wrote a book called The Sinatra Solution that I read from cover to cover and within a week my life dramatically changed!! I went from bedridden and no diagnosis to reading his book and implementing his “awesome foursome” ( coQ10, D-ribose, L-carnitine and magnesium) and confirming what I had suspected from the start- a mitochondrial ‘glich’ if you will. Also, in his book he also discusses the correct dosages for the supplements and the ‘must-have’ ingredients in selecting the right coQ 10 formulation etc.

I enjoy a chemical free diet, jucie my veggies and take my supplements (and much much more) and I now have my life back. I have read somewhere that only 10% of peolple who suffer from chonic fatigue get their lives back!? I feel so passionate about this illness and the possibilty of healing that I plan on writing a book (someday)about my journey and will be going back to school to get my nurse practioner degree within the next few years. I want to help others out there suffering from our affliction but have no one to turn to for help and healing. God has blessed me with this healing plan and now I would like to pay it forward.

I am encouraged to read each of your comments as I have something in common with each of you!! Just know you are not alone and we are on the right track, even if we have to make the track ourselves!!

God bless!

P.S. I have not yet added NADH to my supplement regieme…I will have to try it. What is a good brand and a good dosage?

P.S.S.
I take 100mg coQ10 3 times a day
1000-3000mg of l-carnitine
15+ grams of d-ribose( has to be a good brand some don’t work at all) I take one from bioinnovation.net
400-800mg magnesium a day

Sincerly,

Marjie