Why isn't CFS/ME just Adult-onset Mitochondrial Disease?

[PhoenixBurger]

While trying to research the cause of my symptoms, which consisted of a full-on CFS/ME episode lasting about 2-3 months .... slowly fading away now .... I happened upon the issue of Mitochondrial Dysfunction. I had taken medications which are known to cause damage to the mitochondrial system (energy producing cells in the body). Reading about children born with mitochondrial dysfunction, I found little difference between their symptoms and those of CFS/ME.

Mitochondrial Disease (or the more temporary version - "Dysfunction") can be adult-onset. It can come from toxins such as medications, environmental influences, or life triggers which interact with the genetic predispositions in a person. The end result is the same - inability for the body to produce energy. This is seen on every level, as mitochondria exist both in muscle tissue, other body tissue, brain, and organs. As far as I know, mitochondrial dysfunction doesn't "show" on any standard tests. One would need a muscle biopsy, and even then, it isn't always evenly distributed throughout the body, so could be concentrated away from the particular muscle being checked.

Someone experiencing mitochondrial dysfunction could have system-wide symptoms of "inefficiency" that would look like a whole host of other diseases, yet with no abnormal test results, and no evidence of current infection. Sounds familiar right?

It wouldn't improve on its own, as damaged mitochondria would replicate more damaged mitochondria. Unless exercise is introduced, possibly the passage of time allowing for healing - it would depend upon what caused the damage in the first place, and whether its gone.

This video by Dr. Terry Wahls has "gone viral" lately, and for good reason:

Its a bit long but worth watching through to the end. She gets into the meat of it in the second half. But they say Fibro patients respond quite well to juicing, and mitochondrial supplementation, and careful, guided, increasing exercise. As exercise is one of the few things on this earth which can stimulate mitochondrial biogenesis (development of brand new baby mitochondria).

Why isn't CFS/ME simply a systemwide energy deficiency due to mitochondrial dysfunction?

Thanks.

 

[Sushi]

I think most of us agree that we have mitochondrial dysfunction...but it is caused by something and the is the bugger(s) we are after!

There are other ways to test mito function. I have had a few values tested that showed dysfunction. I'd guess that a lot of us take mito supplements, but that doesn't fix the causes.

Best wishes on this research,
Sushi

 

[Sparrow]

You may want to look into Dr. Myhill's work, if you haven't already. Mitochondrial dysfunction in ME/CFS is her area of specialty.

I agree with Sushi that many people recognize that mitochondrial dysfunction is a piece of the problem. But as she said, it doesn't seem to be the whole problem in many cases, and we can't say anything for sure about what's cause and what's effect. Mito dysfunction doesn't explain every symptom (feeling super viral, swollen glands, temperature issues, sensitivity to light and sound, etc.) as well as some other things or combinations of things, and many of us don't improve in any significant way on mitochondrial supports, gentle exercise, etc. That suggests there's likely more to the puzzle.

 

[PhoenixBurger]

Interesting, thank you.

The product called NT Factor (its in ProPax) is used in many studies for people with Mito dysfunction or malfunctioning energy production. I have been on it now for several weeks and ... well I am improved significantly. Though I can't claim its that stuff - its been used in studies to increase energy and shown to work.

 

[xchocoholic]

PhoenixBurger

While trying to research the cause of my symptoms, which consisted of a full-on CFS/ME episode lasting about 2-3 months .... slowly fading away now .... I happened upon the issue of Mitochondrial Dysfunction. I had taken medications which are known to cause damage to the mitochondrial system (energy producing cells in the body). Reading about children born with mitochondrial dysfunction, I found little difference between their symptoms and those of CFS/ME.

Hi,

I just had a bad reaction to Levafloxin, a flouroquinolone, that damages mitos and like you I am recovering from it. KOW ... I took it for pyelonephritis back in Jan and by mid Jan my shoulders locked up, my knees went out on me and I became exhausted. I've been off pain meds for a couple of weeks now but I'm still struggling energywise and my shoulders and knees are still troublesome. It was a serious kidney infection too tho.

Based on your timeline for recovering and mine, I'd say your experience was from the drug and not true ME/CFS.
But that's based on the hope that you and I totally recover from the damage these drugs caused. I'm assuming I'll go back to my old CFS symptoms once this is over. Most of my CFS symptoms were from food intolerances but I still have disabling OI and PEM.

My ME/CFS started in 1990 with a virus but I was given 3 doses of an antibiotic for green gunk in my lungs and was never the same. My body temp never went over 97 degrees for months on end which is why I think my CFS was the viral onset type. But, while a virus, or whatever, may have initiated a problem, the antibiotics finished me off. My muscles didn't come out of spasm from the first assault until 2006 - 7, 2 years post dietary changes. I'm recovering much faster this time around. kow ...

FWIW, as far as tests to show what's going on with PWCs the problem is that no one is running the right tests. If they looked for leaky gut, dhea, pregnenolone, Hashimoto's even with normal thyroid levels, nutrient defiencies, celiac disease, etc etc they'd certainly find more root causes. But if they actually looked for and treated root causes of symptoms how would they continue to make such a profit off sick patients ?

tc ... x

 

[PhoenixBurger]

xchocoholic thanks for the reply. Dont know if you know my "true" timeline but I am at about 14 months since I took the medications. There was a slow decline for about 9 months and then all heck broke loose. That has lasted until now and i've only been able to manage it by going Paleo and taking this NTFactor stuff, and other mitochondrial supplements like PQQ, CoQ10, ALA, RLA, carnitine, etc.

 

[xchocoholic]

PhoenixBurger

While trying to research the cause of my symptoms, which consisted of a full-on CFS/ME episode lasting about 2-3 months

Hi,

Here's where I got the idea that your CFS lasted a few months. I see now that this says full on CFS/ME. I had a rapid decline within days of taking this med. I see yours was slow.

I would consider my reaction severe tendonitis and fatigue. What do you mean by full on ? Are you dealing with leaky gut ? candida ?

When my ME/CFS hit in 1990, I had these symptoms plus FM pain all over, ataxia, myoclonus, bladder spasms, brain fog, brain zaps, mitral valve prolapse, flulike feelings, oi, pem, candida, swollen lymph nodes, etc etc .. But the neuro problems turned out to be triggered or caused by gluten. I've had most of these under control for almost 7 years now. MC meds are helping lymph node pain.

I'm assuming a semi Paleo diet is helping me get over this reaction now too. I was full paleo from 2008 - 2012. Due to fatigue, I've been eating a lot more grains and legumes, all homemade, in the last couple of months. So far so good. No candida either ... : )

Hope you continue to recover ... tc ... x

 

[RinkyInky]

Has anyone noticed stunted growth with your CFS?

I have noticed that I have very thin bones and I have very little muscle mass such that my hips/ shoulder blades are sticking out of my body. I also have mitochondrial mutations as seen from my 23andMe test.

 

[frog_in_the_fog]

I thought maybe I had some kind of mitochondrial disorder, but it appears my doctors did some testing for it. Labs came back negative. There are a number of tests and some can be quite invasive.

There is a company performing DNA analysis to aid in detection of mitochondrial disorders.

http://www.courtagen.com/test-menu-genetic-test-mtseek.htm
http://www.courtagen.com/test-menu-genetic-test-nucseek.htm
http://www.courtagen.com/test-menu-nucseek-focus.htm

 

[RinkyInky]

I thought maybe I had some kind of mitochondrial disorder, but it appears my doctors did some testing for it. Labs came back negative. There are a number of tests and some can be quite invasive.

There is a company performing DNA analysis to aid in detection of mitochondrial disorders.

http://www.courtagen.com/test-menu-genetic-test-mtseek.htm
http://www.courtagen.com/test-menu-genetic-test-nucseek.htm
http://www.courtagen.com/test-menu-nucseek-focus.htm

Have you tried those?

Also, if you don't have mitochondrial disorder do you know what you have?

Thank you!

 

[frog_in_the_fog]

@RinkyInky I am tempted to try just to cover all the bases. I don't know what I have, but I am working with Stanford to find out. I just have the dreaded catchall diagnosis: CFIDS.

 

[RinkyInky]

@RinkyInky I am tempted to try just to cover all the bases. I don't know what I have, but I am working with Stanford to find out. I just have the dreaded catchall diagnosis: CFIDS.

Have you tried the 23andMe genetic test?

According to my results, I have many gene mutations which include mitochondria mutations.

I am also trying to find out what I have exactly/ find a way to cure it but I believe that it is largely genetic.

 

[frog_in_the_fog]

Our conditions are possibly: genetic, bacterial, fungal, viral, psychological, environmental, or some combination of the above. Take your pick and role the dice. I am currently rolling on viral.

 

[RinkyInky]

Our conditions are either genetic, bacterial, fungal, viral, psychological, or some combination of the above. Take your pick and role the dice. I am currently rolling on viral.

Any reason why you think yours is viral? I want to make sure I've gone through that thought process.

I'm currently looking at genetic as I've had issues with digestion for my whole life and I did notice that my mother had similar symptoms (not as bad as mine though) before she died of cancer. Also, my naturopathic doctor is able to link my genetic mutations to my symptoms, of course it's a guessing game as this is still quite new. I'm also worried that my health issues have stunted my growth as I was sick throughout childhood/puberty. I am 24 now with wrists skinnier than my 8 year old cousin :/

 

[frog_in_the_fog]

I have rolled the dice many times before. I have seen: a naturopathic doctor, a ayurvedic nurse practitioner, endocrinologists, a psychologist, a cardiologist, an immunologist, and internal medicine doctors. All rolls were no dice. My illness started with flu like symptoms, so I placed a new bet and I waiting to see if I hit seven or eleven. So you see, all this is like a game. You win some, you lose some. We are all different, and some of us are better players than others. Good luck my friend!

 

[RinkyInky]

I have rolled the dice many times before. I have seen: a naturopathic doctor, a ayurvedic nurse practitioner, endocrinologists, a psychologist, a cardiologist, an immunologist, and internal medicine doctors. All rolls were no dice. My illness started with flu like symptoms, so I placed a new bet and I waiting to see if I hit seven or eleven. So you see, all this is like a game. You win some, you lose some. We are all different, and some of us are better players than others. Good luck my friend!

Thanks for taking the time to respond. Good luck to you too, hope we are able to solve our problems in the near future.