1. Health

Discuss in my forum

Adrienne Dellwo

Chronic Fatigue Syndrome & Mitochondrial Dysfunction

By July 4, 2009

Follow me on:

Mitochondrial dysfunction is getting more and more attention as an underlying mechanism of chronic fatigue syndrome. Dr. Sarah Myhill, a UK doctor who was an early proponent of this theory and has a treatment protocol based on it, has just published a paper on mitochondrial dysfunction that even points to a possible diagnostic test.

What are Mitochondria?

Mitochondria are specialized parts of cells that, among other things, convert nutrients into energy. That energy enables your cells to carry out their many jobs in your body -- or, if you have mitochondrial dysfunction, that energy isn't produced, thereby preventing your cells from doing their jobs properly.

Proposed Diagnostic Test

The test discussed in this paper is the "ATP profile." It's a blood test that looks at several levels, including ATP (adenosine triphosphate), which is the body's primary form of energy, and ADP (adenosine diphosphate), which mitochondria use to make ATP. Myhill's paper says the results were clear -- the more severe the dysfunction, the more severe the symptoms. It also says the test can differentiate between people who are fatigued because of stress/psychological factors and those who have cellular dysfunction.

That all sounds pretty exciting, but this isn't a test you can rush out and take right now (not that you probably do much rushing!) This research is in the early stages and needs to be confirmed, re-confirmed, and re-re-confirmed before it'll be accepted by the medical community. Best-case scenario, it'll be years before this test is widely available. However, that doesn't mean we can't use the information to our benefit right now.

Treating Mitochondrial Dysfunction

Dr. Myhill's recommendations for treating mitochondrial dysfunction is a set of supplements, many of which are familiar to most of us:

Some of the dosages she recommends are outside of the normal range, so please talk to your doctor and pharmacist and know any risks associated with high dosages before you start this (or any other) treatment regimen.

Other doctors recommend vitamin B2 (riboflavin) for correcting mitochondrial problems, and physical therapy for improving range of motion and dexterity.

Have you taken these supplements? Did they help? Have you undergone specific treatment for mitochondrial dysfunction? Share your experience by leaving a comment below!

__________________________


Stay up to date: subscribe to my free
and get support and information in our
__________________________

Suggested Reading:

Photo &copy Chad Baker/Getty Images

Comments
July 4, 2009 at 3:30 pm
(1) Laura says:

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.

July 4, 2009 at 9:37 pm
(2) Jeff Bertram says:

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.

July 6, 2009 at 9:48 am
(3) Jessica says:

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.

August 14, 2009 at 9:53 am
(4) Adrienne - Your Guide to Fibromyalgia & ME/CFS says:

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.

July 7, 2009 at 10:00 pm
(5) Jodith says:

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.

July 10, 2009 at 4:54 pm
(6) Dena says:

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. :P

July 10, 2009 at 6:23 pm
(7) Bridget says:

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.

July 11, 2009 at 1:05 am
(8) Juliet says:

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.

July 13, 2009 at 3:45 am
(9) Valetudinarian says:

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.

July 22, 2009 at 5:21 pm
(10) Lisa says:

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

September 16, 2009 at 6:42 pm
(11) 121starlite says:

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.

September 20, 2009 at 6:21 am
(12) The_Minkey says:

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’.

September 20, 2009 at 8:08 am
(13) The_Minkey says:

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

October 8, 2009 at 12:30 am
(14) Lucy says:

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?

November 24, 2009 at 10:42 pm
(15) Marjie says:

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

June 13, 2010 at 12:20 am
(16) Di says:

I began taking CoQ10 about 8 months ago after reading about the possible benefits of it in one of these forums. After about a month I realised that I was feeling a lot less fatigued and just generally feeling better with both my FMS & CFS. I still had ‘bad’ days but, they were less, and the ‘good’ days were far more. I managed to get through a hot & humid summer in pretty good shape. One thing that happened though was that my eyes were becoming EXTREMELY light sensitive (they always have been to a degree, but never this bad) and causing much more frequent migrains. The only thing I had done differently over this period of time was take the CoQ10 so I investigated and found that one of the POSSIBLE side effects was increased light sensitivity of the eyes. I stopped taking the Q10 and my eyes returned to ‘normal’. I was bitterly disappointed as the CoQ10 made a huge difference to my quality of life & as I am alone need to be able to stay on top of things as much as possible. I would be interested to hear of anyone else who has the ‘eye light sensitivty’ problem and to know how they handle it. Because it is a problem I have always had, I guess the CoQ10 exacerbated it, but for anyone else I would definitely recommend trying the ‘Q10′. I was taking 2 x 75mg tabs @ around 10.00 am each day – perhaps I should try a different quantity/break-up ????

From Your Guide: I had a similar experience with CoQ10 — even moderate sunlight, through sunglasses, caused stabbing pains in my eyes. I also had several more side effects from it, so I haven’t been able to enjoy the benefits at all. ~Adrienne

June 16, 2010 at 2:16 pm
(17) Jennifer says:

This article is absolutely fascinating. I have suffered low energy my entire life. The stress of pregnancy and breastfeeding two children 5 years apart and then getting the flu brought on this crisis I am suffering from now. Early on I was lucky to find Dr. Teitelbaums book and added tons of supplements including the ones listed above, except NADH, which Dr. T says isn’t that helpful, but I’m willing to try anything. Maybe he is wrong.

I got the most help from SAMe and from taking 5-MTHF per the protocol: Glutathione Depletion Methylation Cycle Block: A Hypothesis for the Pathogenesis of Chronic Fatigue Syndrome
By Richard A Van Konynenburg, Ph.D. (Independent Researcher and Consultant). I believe I have a dysfunctional gene for the enzyme that utilizes folic acid. Taking 5-MTHF bypasses that enzyme and allows you to use folic acid.

That helped within 4 days, but I still struggle with a milder form of the symptoms and recently found out I am bradycardic during the night. I have had sleep apnea (and use cpap religiously) for years, but a follow up pulse oximetry revealed that despite my cpap I’m still bradycardic with heart rate going down to 41. Clearly, I need to continue to root out the cause of the problem. I recently increased my magnesium, slowly, to 900 mg a day and I saw relief with my muscle tension. I plan to add more

I’ve been sick for about 7 months and got partial relief about 6 weeks ago. As I continue to discover new things to try, I continue to get better. It makes sense that it would take a long time to recover, considering how long it took to get so sick.

I’m a firm believer that this is nutritional in nature (pregancy and nursing being so demanding nutritionally–it makes sense)! I’ve started juicing and also using plant enzymes and betaine hcl to help my digestion because I believe my digestion was terrible. This would be in place of a raw foods diet which I don’t have the energy or time to do right now–my research shows that adding back the plant enzymes that are killed during cooking has the same effect as a raw food diet. Good reading on the topic by a Dr. Loomis, if you are interested.

Also you might want to read Dr. Mercola’s (he has a website) opinion about coenzyme q10–he believes the ubiquinOL (not ubiquinone) version of coQ10 is better for those over 40 who may have trouble utilizing it–despite being younger than 40, I believe anyone with CFS or FS falls in that category! It is more expensive, but for those taking massive amounts, it might be worth it to try this version–you might get more bang per pill.

I’m only 37 and hope to rebound enough to have a more normal life and be the best mom possible to my kids–and most importantly–prevent them from suffering this way!

I sincerely hope my comments might help someone else. Your comments above, have certainly helped me!

September 22, 2010 at 2:26 am
(18) Andrew Porter says:

As a person with chronic XMRV infection that may be the cause of my M.E./C.F.S., taking all the recommended supplements has failed to provide any mitochondrial benefit, therefore, my fatigue remains. However, research from Glasgow, Scotland, revealed that people with my condition were found to have malformed mitochondria, therefore, very poor aerobic function. By then using an anaesthetic, the mitochondria fully recovered for as long as the anaesthetic remained. Once the effect wore off, the malfuntion returned clearly indicating a neurological problem. Perhaps my chronic infection causes a neurological problem, and trying to provide all the nutrients required to my mitochondria is analogous to putting better fuel into a car that has two ignition leads broken and wondering why the better fuel does not help.

Time to determine whether my immune system is at fault, or whether my XMRV infection is located in an area that my immune system cannot tackle. I suggest that the latter applies, therefore, rather than being a disease of my mitochondria, my mitochodria are malfunctioning because of my chronic infection.

March 25, 2011 at 8:32 pm
(19) Mog says:

I had the ATP profile test done a few years back and it showed that I had mitochondrial disfunction. However, I understood that mitochondrial disfunction could show up as a feature in many illnesses. It’s not necessarily the illness itself, but is just a symptom of a sick body. I have tried the supplement regime to improve it and unfortunately it didn’t seem to have any effect. I didn’t notice any difference with D-ribose, for instance. I am currently trying all the supplements again with some added extras, because obviously, even if it’s not the cause of the illness, helping your struggling cells must surely help. Hoping it will work better this time.

March 30, 2011 at 12:22 pm
(20) Corinne says:

Thanks to all of you that have posted here.

I am currently struggling to cope with my ME / CFS and have just ordered some q10 in hope that it alleviates some of the more far reaching fatigue symptoms. I try to put on a brave face for the sakes of others but all I want to do recently is cry or sleep.

Will log back on in about a month (if not sooner) and let y’all know how I am feeling after trying these.

ty. x .

June 12, 2011 at 8:07 pm
(21) Leslie Wilson says:

I have debilitating fatigue with Fibromyalgia. I may have Chronic Fatigue Syndrome too. I had an episode last spring, where I was exposed to toxic powder residue for my bathtub being resurfaced. I got terribly sick and fatigued for several months. I took CoQ10, L-Carnatine, Magnesium and d-Ribose everyday, and it relieved me of my terrible fatigue within several weeks.

August 28, 2011 at 11:12 am
(22) Sherry says:

I have had symptoms of chronic syncope/falling ever since 2005 using a w/c at present on lower level and basically crawl in my upstairs. I can have good days good weeks and so on and get have bad days all spuratic and nothing to relate to it. I was diagnosed with POTS which I definatley have was diagnosed with tilt table basic symptom tachycardia,blood pooling in lower extremities. My syncope/falling is what is so baffling to Dr. I have had all the tests from A-Z seizures ruled out, MS ruled out by spinal tap lymes ruled out, cardiac do have tachycardia related to POTS. My last stop was Cleveland Universty Hosp with a well known neurologist that specializes in syncope tilt test done there again which was consistent with POTS,but the falling/syncope he was totally baffled by I do have lesions on my MRI of my brain he looked at that and definately ruled out MS once again he said the lesions are not in the right place of the brain and recommenend I have a MRI done yearly to make sure not change and there has been no change. My falling is so unique Dr’s look at me in disbelief being sexually assulted and raped when I was 18 is always an easy out for them I’m somehow have not dealt with that they say and it should stop with counseling I have been to so many counselors I have pretty bad depression/anxiety which is basically controlled by meds.
when I do fall it is so quick I lose about 2 seconds then on the floor I know I basically passing out but am always conscious but do lose that 2-3 secs. The Dr. that saw me in Cleveland did mentioned that mitochondrial disease is a true possiblity but there is not enough know started me a new med because the only other thing he thought it might be is a migraine pattern that somehow is causing me to fall here it is 2011 and still falling nothing changes if anything worse was able to walk and push my w/c but now not really I just have to sit in it I really want to pursue this but have no idea where to turn.

November 4, 2011 at 12:26 am
(23) a2730939 says:

I’ve said that least 2730939 times. The problem this like that is they are just too compilcated for the average bird, if you know what I mean

November 4, 2011 at 12:26 am
(24) a4105475 says:

I’ve said that least 4105475 times. The problem this like that is they are just too compilcated for the average bird, if you know what I mean

November 4, 2011 at 12:26 am
(25) a4078858 says:

I’ve said that least 4078858 times. The problem this like that is they are just too compilcated for the average bird, if you know what I mean

November 4, 2011 at 12:26 am
(26) a588086 says:

I’ve said that least 588086 times. The problem this like that is they are just too compilcated for the average bird, if you know what I mean

July 7, 2012 at 4:11 pm
(27) Micro Niche Site says:

Pretty section of content. I just stumbled upon your website and
in accession capital to assert that I get actually
enjoyed account your blog posts. Anyway I will be subscribing to your augment and even I achievement you access consistently rapidly.

September 7, 2012 at 12:02 am
(28) Your Future says:

Racetams (Piracetam, Oxiracetam, Aniracetam, etc.) fix mitochondrial energy dysfunction, though Science still cannot say why.

Legal, cheap, for sale online at many stores (eBay, Cerebral Health, Smart Powders, etc.) and totally safe – they lack any kind of toxicity, with no withdrawal syndrome and all helping the brain, these are the best molecules for anyone and especially for someone with CFS, as I have.

Oxiracetam is the most powerful mitochondrial energy enhancer of the racetams.

September 10, 2012 at 4:07 am
(29) Undead says:

I’m sincerely happy for all of you, who have found some relief by taking supplements. I’ve tried tens of different including L-carnitine, Q10, D-ribose, magnesium and vitamin B’s, and have noticed no effect whatsoever. I’ve been diagnosed with CFS and mitochondrial dysfunction was observed. It seems that if a given supplement isn’t the limiting factor for your mitochondrial function, taking it won’t help.

I was offered bupropion (wellbutrin) and I guess I’ll give it a try, though I’m a little bit skeptic about taking antidepressants while not feeling depressed. Also I’d like to think that antidepressants wouldn’t be a long term solution.

To see whether yeast (candida) has anything to do with my symptoms, I’ve tried a strict diet, but the symptoms remain. Maybe I’ll give a raw/alkalizing diet a go at some point when I don’t have any other experiments going on.

April 28, 2013 at 8:09 pm
(30) Barbara says:

It has been very interesting reading everyone’s accounts and thier progress or lack of it, their frustration and the lack of support from others. Good luck to everyone. If only CFS would come with a stamp on our foreheads! I was fortunate to find a doctor who recognised my illness and prescribed the same cocktail My CFS was due to sick building symdrome so I was also directed to take an infrared sauna 15 to 20 minutes a day, I also drink alkaline water with a ph level of 8.5 to 9 (Kangan Water) and have become a reluctant vegan. I have been almost a year on this regime and feel so much better in so many ways however I still struggle if I overdo anything. I measure my energy output closer than I have have ever measured anything and any added output will still knock me out for several days. However my head is clear, I am less feverish and have “Housecoat” days as opposed to “Bed” days. I feel it has helped improve the quality of my days.
Before I was diagnosed I was prescribed antidepressants but they did not help me and created more of a fog. I tried for 6 months before I stopped.
Has anyone heard of Red Maca Powder? Any reviews?
Thank you for this forum. I will follow this one to see how everyone is doing.

May 7, 2013 at 6:25 am
(31) Johan says:

To The_Minkey who wrote “Illness aside, one of the worst features of CFS is the character assassination that takes place, by others and within oneself.” This is so true. I have been living with this condition now for at least 4 years and it has been hell up to the point where I have had my ATP profile tested which finally confirmed everything. It remains a challenge though as friends, family and most GP’s don’t know much about it and are quick to assume that you are either depressed, lazy, or have a mental dissability of some sort.

In any event, I am also curious to understand the difference between CFS and Mitochondrial Dysfunction, if any. I am struggling with an unhealthy, super-quick metabolism which means that I am unable to absorb the nutrients, proteins and lipids from normal food. As such I am dependent on suppliments, even amino acid suppliments. If I don’t take the suppliments I quickly fall off the cliff both physically and mentally. I am still trying to determine whether the mitochondrial problems originated from my gut problems or the other way around. I hope to get an answer to that soon as I have just had intensive tests done to determine the cause for my metabolism related issues. If the cause lies within the gut, then at least it is treatable to some extent. Solving that would hopefully improve the other symptons over time. There is a German product called Activomin which detoxes, lines and restarts one’s digestive system. That may be the way to go to get rid of all the bad stuff in the intestines and start fresh.

May 7, 2013 at 6:26 am
(32) Johan says:

Part 2: As for day-to-day care, I concur with the majority “main stream” suggestions above. I would also add limiting one’s gluten intake and processed foods, while taking in plenty of proteins. A Mediterranean diet is a good guideline. People in Mediterranean countries consume more total fat than Northern European countries, but most of the fat is in the form of monounsaturated fatty acids from olive oil and omega-3 fatty acids from fish, vegetables, and certain meats like lamb, while consumption of saturated fat is kept to a minimum. Short-chain fatty acids are also extremely important for the cells.

I take a personalised Amino Acid suppliment, L Glutamine, L Carnitine, Ubiquinol Co-Q10 (after reading this I will try a higher dosage), Butyrate (short-chain fatty acids), Kefir (a natural source of good bacteria and enzymes for the stomach), Calcium, Magnesium, Tryptothan, Phosphatidylcholine and a blended product with 5-HTP, L-Tyrosine, L-Phenylalanine, St. John’s Wort, Theanine, Vit B complex, Ginseng and Ginkgo biloba. I have had IV (drip) treatments consisting of Phosphatidylcholine and Glutathione and these were quite beneficial but started to irritate my veins after a few months. I have also just started with Glycine which, together with Trypthothan, seems to help with the sleep problems.

Each sufferer’s condition is probably unique, so he/she would react differently to medication/suppliments. Finding the right balance of the right remedies is therefore a challenge. It is trial and error until you get there (the broad spectrum referred to by many on this forum should be the starting point for “new comers”), but once you manage that it makes life a lot easier.

I am curious about Your Future’s suggestion. It may be something to explore.

May 7, 2013 at 11:40 am
(33) Johan says:

Part 3: In reference to the NADH, have you read this:- http://en.wikipedia.org/wiki/NADH_dehydrogenase_(ubiquinone) and in particular the last paragraph under Function? I am therefore slightly uncertain as to whether one should use NADH – does anyone have some verified information on this?

Jennifer referred to natural plant enzymes. Well, I am using Barley Grass powder and it is extremely rich in proteins. I find that it works quite well with an afternoon banana & kefir shake.

I believe that the condition is treatable, at least to managable levels. One needs to manage your energy and your stress levels while nurturing the body with a personalised essential suppliment and detox mix. It is important to try and establish the cause though (infection, intestinal related problems, or other). If the cause can be treated, the symptons should also become less severe if that too gets treated with these known suppliment, detox and cell repairing agents. If it was inherited and its part and parcel of your DNA mix, then it could be more complicated I suppose.

May 13, 2013 at 4:37 am
(34) en/index.php?Itemid=0&option=com_fireboard&func=showcat&Go=Go&catid=0 says:

What a stuff of un-ambiguity and preserveness of precious familiarity regarding unexpected feelings.

May 16, 2013 at 4:51 am
(35) Johan says:

Part 4: In reference to what I wrote above regarding NADH, please read this interesting article on the benefits of NADH: http://www.nadh-priceinfo.com/nadh_doctor_birkmayer_interview.cfm. It would appear that NADH (together with Co-Q10) is essential for people suffering from low energy levels due to mitochondrial problems. People who can’t absorb NADH effectively would also find a hint in the article, whilst the other alternative is to take Vit B3 in stead. It is less effective, but easier to absorb. I was advised to also use a mitochondrial enegiser/resusitation suppliment such as this one – http://www.lef.org/Vitamins-Supplements/Item01578/Mitochondrial-Energy-Optimizer-with-BioPQQ.html. I have also just started with Piracetam (as per Your Future’s suggestion), but so far the effects have been undetectable.

May 17, 2013 at 8:55 am
(36) sportsbooks basics says:

My brother suggested I might like this website. He was entirely right.
This post truly made my day. You can not imagine just how much
time I had spent for this info! Thanks!

my web site: sportsbooks basics

May 20, 2013 at 12:41 am
(37) Jerzy says:

I was healthy until 2010 took antibiotic Levaquin only 5 pills – is same drug like Cipro or Avelox. Long story but this drug ruin my life. Few months ago I did mito function test in GB in doc. MyHill lab. I am 49 my mito function is only 9% like 90 years old man. You can check your med. record if you ever had this drug. Is almost 1000 peoples on FB they know about adverse drug reaction, even months after you took it. You can visit our wall of pain on face https://www.facebook.com/pages/The-Fluoroquinolone-Wall-of-Pain/209182505773463?fref=ts I have two kids and I have no idea haw longer will be with them. I have over 50 symptoms – neuro, orto, vision, gastro ect ect. My kidney, gall bladder are damage. My energy due to mitochondria damage is almost 0.

June 18, 2013 at 9:19 pm
(38) whatever says:

how does everyone have energy to do what you advise doing? I can’t bathe or brush my teeth or do anything without using up all of my energy. If I weren’t on certain meds, I would have died in bed years ago.But I can barely function. I might as well be dead. I have zero energy and no docs or NPs have more than a few minutes at a time.

August 4, 2013 at 10:32 am
(39) rony says:

After 25 years in the Dept. of Surgery, please look into sv 40 virus/ polio

August 7, 2013 at 12:40 pm
(40) Heather says:

Hello all – I have struggled with these symptoms for over 20 years wirh periods of extreme fatigue after surgeries. I have a strong family history of ms, dystonia and fibromyalgia. After experiencing severe symptoms for the last few years following spinal fusion surgery. I am slowly improving, I say 2 steps forward and one step back still denotes forward progress. I am taking a mito cocktail with simply amazing results. I no longer nap daily, I walk ride bike and swim. I still get alot of pain and easily flare up. I recommend trying this cocktail. It is 1000 mg co q 10, 1000 mg l carnitine, 100 mg b complex which includes B 1 and 3. 1000 mg vit C, 400 iu vit E, 40mg vit D. This can be found on mito.org. I also use b 12 sublingual prior to exercise and msm powder 10,0000 mg daily. Please note that this is not a replacement for a healthy diet and lifestyle. Try the supplements for 3 months if they dont help, stop taking them. Ask dr first of course. :) wellness!

September 11, 2013 at 10:29 am
(41) Stacy says:

I too began feeling these symptoms after having my third child (second and third were only 13 months apart- both were breast fed for at least four months each). I began feeling muscle aches in my arms, legs and neck- thought I had the flu until the pain didn’t subside and I never ran a fever or felt sick to my stomach. The fatigue sat in and the pain in my muscles became worse- I had no idea what was wrong. I had always had digestive issues and mild bouts of depression so I thought it could be fibro. Over the last 6 years I’ve seen MDs and two different Rhuematologists. The first blood test results indicated both positive and negative results for RA- no diagnosis. It also showed a low number for Lupus- no diagnosis. The second Rhuematologist did a wide range of blood work and told me he could not affirm ANY diagnosis for RA, Lupus, Sojourns, etc. However, I am still on Plaquenill for now and he even prescribed low doses of steroids (I have not taken). I want to go off Plaquenill because I have no diagnosis that calls for it. I ran across an article in First for Women about Mitochondrial Dysfunction and felt as though I had found a logical answer to my symptoms. I am going to alert my Dr. of this and request to cease Plaquenill and see if I can start this supplement regiment asap. I take B12 and it does help. I had taken CoQ10 as well but maybe I need to increase the dosage. Thanks to all of you for sharing these amazing stories!~

February 7, 2014 at 4:51 pm
(42) Carla says:

I have had CFS for almost 25 years and it has been progressive. I have been told thru out the ordeal that I had Candida and / or Adrenal issues.
The woman who said that she got sick after taking antibiotics, maybe you beneficial flora was eradicated and needs to be restored. There are so many theories. The newest is that dark greens need to be lightly cooked.
This is something that I cannot abide by. An earlier writer referred to getting well with his raw food diet. Then there are all of the supplements.
Overwhelming. I would like to know if anyone here has been told that they have Candida, what their symptoms were and how it was diagnosed as there is no specific blood test. For the lady whose husband thinks she is lazy, I feel for you . This is toxic for you and will impede healing but then you probably already know that. Being positive is possibly the most important thing that we can do for ourselves. I have had problems with friends not understanding . The core group do now , but not completely. It is inconvenient to have a sick friend!!!

February 8, 2014 at 12:03 am
(43) Maureen says:

I have CFS and have recovered significantly. I can run again, work out, and lead a relatively normal life. I was diagnosed twice by MDs specializing in CFS research. I found the CFS protocol of D-Ribose, L-Carnitine, magnesium, and Ubiquinol (CoQ10) worked. Other things obviously helped but this was the key for me. It talks a few months to feel results. Rest while you get better.

February 14, 2014 at 11:55 am
(44) site says:

Hi, this weekend is fastidious designed for me, because this occasion i am
reading this great educational article here at my
residence.

Review my web page :: <a href=”http://host-nice.com/”>site</a>

February 19, 2014 at 9:07 pm
(45) Heather says:

Maureen,
What brand are the supplements?
Thanks!

March 23, 2014 at 6:43 pm
(46) Francisco Garcia says:

You should try this supplement. it’s called Alfa Glycopeptides. You can listen these audios. Really good results here en Mexico and USA too.

http://www.ivoox.com/alfa-glycopeptides-dr-jack-tips-canference-call-audios-mp3_rf_2950576_1.html

http://www.ivoox.com/mitochondrial-dysfunction-dr-jack-tips-audios-mp3_rf_2950856_1.html

Leave a Comment

Line and paragraph breaks are automatic. Some HTML allowed: <a href="" title="">, <b>, <i>, <strike>

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.