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ME/CFS as a Mitochondrial Disease

  [ 371 votes ]   [ 38 Comments ]
By Dr. David S. Bell, MD, FAAP • www.ProHealth.com • April 26, 2008


Reproduced with generous permission from the April 2008 issue of Dr. Bell’s e-newsletter, Lyndonville News.

ME/CFS is a disorder involving the cells’ energy-producing mitochondria – but it’s a mitochondrial disease like no other, Dr. Bell believes. He explains why it hasn’t been diagnosed, classified, and studied like other kinds of mitochondrial diseases - and why a change may be “just around the corner.”

________________

In the past week I have seen two patients who had an exercise lactate test which showed an elevation of blood lactate after mild exercise [considered a sign of mitochondrial damage]. They were told by their physician that they had “mitochondrial disease.” They were advised to take some vitamins, maybe some CoQ-10, and have a nice day. Like nearly everything else, the term mitochondrial disease left these patients feeling bewildered and somewhat lost.

While I agree that ME/CFS is a mitochondrial disease, this term needs clarification because ME/CFS is a mitochondrial disease like no other.

Until recently, when a child was diagnosed as having a mitochondrial disease, it was a disaster, even a death sentence, for it meant that there were major abnormalities in the mitochondrial or nuclear DNA that regulated energy production. Without energy (ATP) it is impossible to survive. These diseases are called MELAS, Kearns-Sayre, Leber hereditary optic neuropathy, and so on. Nearly three hundred mitochondrial illnesses have been identified from genetic mutations. It is a specialized area of pediatrics, where it is possible to measure severe abnormalities in the mitochondria on muscle biopsy testing.

This is what most clinicians think of when the words "mitochondrial disease" are mentioned, but these illnesses do not, in general, apply to ME/CFS. Many patients with ME/CFS have had muscle biopsies, and most of the mitochondrial tests on these biopsies are relatively normal. We will return to why this is in a bit.

What are Mitochondria?

Think of mitochondria as the power factories of the cell.

  • Nearly every cell in the body has them, usually around 500 or so in every cell.
  • They take in oxygen and glucose (blood sugar) and put out carbon dioxide and energy (ATP).

There are two hundred different steps in this process, and we will quiz you after this article. Actually, all you need to know is that:

  • ATP is the prime energy storage chemical (battery) of the body, and
  • Oxidative phosphorylation (ox-phos) is the complex of electron transport chains that do the major work of conversion.

Because the mechanism of energy production is essential to nearly every cell, a defect will have symptoms in every organ system. Sound familiar? Oxidative metabolism, the ability to utilize oxygen to produce energy, is quite efficient, and it is fascinating to look at the theories of how it came to be part of our cells.

However, when the energy demand is excessive, the cells revert to a more primitive, and less efficient, form of energy production - anaerobic metabolism (metabolism without oxygen). For an interesting study on the anaerobic threshold [point of reversion] in ME/CFS, see the literature review that follows.

When to Suspect Mitochondrial Disease

In a recent review article (Haas et al., 2007) there is a list of symptoms that suggest looking for mitochondrial disease. Among these symptoms are neurologic symptoms such as ataxia (coordination problems), myoclonus (twitching), and encephalopathy (brain injury), exercise intolerance, sensitivity to general anesthesia, and constipation.

A score sheet has been developed to help in when to suspect mitochondrial disease - and most ME/CFS patients would fall into the positive range. For lots of information on mitochondria please go to http://www.mitosoc.org. But remember that they are talking about “conventional” mitochondrial disorders, not ME/CFS.

A Mitochondrial Problem Can Be
Secondary to Some Other Problem

There is another form of mitochondrial disease, or “secondary mitochondrial disease.” In secondary mitochondrial disease the primary problem is not with the mitochondria, but some other problem that messes up mitochondrial function. There are many illnesses where the primary defect ends up causing problems with the generation of energy in mitochondria.

For example, thyroid hormone is needed for successful oxidative phosphorylation. With hypothyroidism (low thyroid) energy production is impaired, and fatigue, weakness, temperature regulatory problems, and difficulty concentrating result. This is one of the reasons that when you start to describe fatigue to your primary care physician, he or she begins to write out a script to test for thyroid hormone.

So What Is the Problem?

Why has ME/CFS not been diagnosed, studied and classified like other mitochondrial diseases? There are several reasons:

a. Mitochondrial disease is thought of by clinicians as a fatal disease of infancy, not one that occurs later in life.

b. Mitochondrial disease is usually thought of as a fixed, structural disease, and ME/CFS is a relapsing, remitting illness with some persons even becoming entirely well.

c. Mitochondrial diseases are hard to diagnose, requiring muscle biopsies and detailed ox-phos testing.

d. Ox-phos testing is often normal in ME/CFS, and this has been the critical piece that has diverted attention from mitochondria.

e. Physicians are used to thinking of organ-specific diseases (liver, kidney, etc), and mitochondria are in all cells.

f. Few physicians have taken ME/CFS seriously until recently, and research in this area has been scant.

Of the above reasons, only reason “d” is important to us here (ox-phos testing is often normal in ME/CFS). In 1990 I did a muscle biopsy study on 10 ME/CFS patients with Dr. June Aprille, PhD, an expert in cellular metabolism. All ten persons had relatively normal ox-phos studies. Although we did not publish this finding, it is consistent with the few published studies that have been done.

How can you have mitochondrial disease when the mechanism tests normal? I think that the answer to this paradox is just around the corner.

Hypothesis

If you have a patient with emphysema who is sitting in an armchair, he or she is not out of breath. You can measure the damage in tests, but to make symptoms, you have to “stress” the system – make the patient run up and down stairs. If a person with G-6-PD deficiency [linked to fava bean allergy] is sitting quietly, the blood looks normal. But feed this person fava beans and abnormalities quickly become obvious.

Persons with ME/CFS keep themselves at a balance point. They rest for two hours, then do a half hour of activity, then rest, then do more and so on. The worse the illness, the less overall activity is possible. If a ME/CFS patient does absolutely nothing for a few days, they usually feel pretty good. But go to the shopping mall for eight hours and the crash occurs.

Here is the problem: In the patients studied for mitochondrial disease, they have been resting up (staying above the balance point), and a muscle biopsy done at that moment will probably not show much. But have a ME/CFS patient exercise, and then study mitochondrial function. My hunch is that the ox-phos reactions will be seriously impaired, but this has not been systematically and methodically done. For me, this hypothesis is generated by the VanNess, Snell, and Stevens “Two-day Exercise Test” study described in the next section.

There are lots of studies that implicate mitochondrial problems; Dr. Hirohiko Kuratsune and carnitine; Dr. Suzanne Vernon and genomics; Dr. Kenny DeMeirleir, Dr. Martin Pall, Dr. Paul Cheney, and many others. But this problem cannot be studied in tiny fragments. It is time for a good study to look at the different steps of the body’s ability to generate energy. Let’s hope we get to see it within our lifetimes.

Literature Review - the “Two-day Exercise Test”

In the most recent Journal of Chronic Fatigue Syndrome (Vol 14, Number 2, 2007) there are two articles which may be the first to offer an objective proof of disability in ME/CFS. More importantly, if shown to be correct, they may give us an avenue to test and measure the biochemical abnormality which causes the symptom pattern. I would like to briefly review these two papers and present a case of pediatric ME/CFS which demonstrates the same abnormalities.

In the first of these papers, Margaret Ciccolella, a lawyer, teams up with Staci Stevens, Chris Snell, and Mark Van Ness of the University of the Pacific to review the legal issues surrounding exercise testing and disability(1). As everyone familiar with ME/CFS well knows, insurance companies require proof of disability, which a standard exercise test may or may not demonstrate. However, even if disability is present, insurance companies have been quick to say that the patient was not trying hard enough, or that the patient is de-conditioned.

The second paper of this series by VanNess, Snell and Stevens explains the two-day exercise test and presents results for six patients with ME/CFS(2).

As clinicians have observed, the symptom of “post-exertional malaise” is one of the most distinguishing features of CFS. This symptom is listed as one of the eight in the criteria of the Centers for Disease Control(3), and is central to the diagnosis in the recent Canadian Case Definition(4) and the proposed pediatric case definition(5). It is beginning to look like the symptom of post-exertional malaise is at the root of disability, and may be central to the pathophysiology of this complex illness spectrum.

A person with ME/CFS may be at home for several days doing little except basic activities of daily living. When this patient decides to go shopping, he or she will drive to the mall and shop for one or two hours. During this time, observers would say that the person looks entirely well, not appearing disabled. However, following this activity the patient will experience an exacerbation of pain and other symptoms of ME/CFS. This exacerbation may last one, two or three days, and, in my opinion, the more severe the illness, the longer and more severe the exacerbation.

This phenomenon is known as post-exertional malaise. The symptoms of the illness (malaise) are exacerbated by mental, physical or emotional activities (post-exertional). In an employment environment, the patient may be able to do a job well for one or even several days. However, disability lies in the inability to sustain this normal level of activity. The two-day exercise test is the first to begin to explain this phenomenon.

The exercise test is no different from what has been used for years. The patient exercises on a stationary bicycle (bicycle ergometry) and breathes through plastic tubing to measure the concentration of oxygen and carbon dioxide as well as the total amount of air. The six female patients and six sedentary matched control subjects of the study were all able to achieve maximal exertion. The ME/CFS patients had a slightly lower V02max (maximal oxygen utilization) than controls (28.4 ml/kg/min vs. 26.2 ml/kg/min) and lower VO2 at anaerobic threshold (15.01 ml/kg/min vs. 17.55 mg/kg/min) on the first day of exercise testing.

These values are not dramatic, nor are they statistically significant.

It is on the second day that interesting results are seen. The same test was repeated the following day for all 12 subjects. As is often the case, sedentary controls improved slightly in their ability to utilize oxygen, going from 28.4 to 28.9 ml/kg/min for VO2max and from 17.55 to 18.00 ml/kg/min for oxygen utilization at anaerobic threshold. The CFS patients however worsened in both categories: VO2max fell 22% from 26.23 to 20.47 ml/kg/min, and oxygen utilization at anaerobic threshold fell 27%, from 15.01 to 11.01 ml/kg/min.

To put this into perspective, these values are in the “severe disability” range on the AMA guidelines, and the decline in function from day one to day two cannot be explained by inactivity.

Sedentary or de-conditioned persons do not change their oxygen utilization because of an exercise test. Even patients with heart disease, cystic fibrosis or other diseases do not vary more than 7% from one day to the next. However, the patients with ME/CFS in this study had a significant drop; something occurred because of the test on the first day that interfered with their ability to utilize oxygen on the next day. And this is exactly what patients with ME/CFS have been describing with the symptom of post-exertional malaise.

As the authors state, “The fall in oxygen consumption among the CFS patients on the second test appears to suggest metabolic dysfunction rather than a sedentary lifestyle as the cause of diminished exercise capacity in CFS.”

Conclusions

The results of the two-day exercise testing are objective and not dependent upon subjective symptoms. Moreover, hypochondriasis, intentional falsification, and/or poor effort can be detected by the physiologic parameters. Therefore:

  • The two-day exercise test, if confirmed in a larger trial, could become a clinical trial end point.
  • More importantly, evaluations could be designed which would demonstrate the specific metabolic abnormality generated by the exercise of day one and demonstrated on the second day exercise test.

It would be my hope that these findings be explored without delay.

Sources:

  1. Ciccolella M, Stevens S, Snell C, VanNess J: "Legal and Scientific Considerations of the Exercise Stress Test". JCFS 2008, 14(2):61-75.
  2. VanNess JM, Snell CR, Stevens S: "Diminished Cardiopulmonary Capacity During Post-Exertional Malaise". JCFS 2008, 14(2):77-85.
  3. Fukuda K, Straus S, Hickie I, Sharpe M, Dobbins J, Komaroff A, Group ICS: "The chronic fatigue syndrome: a comprehensive approach to its definition and study." Ann Intern Med 1994, 121:953-959.
  4. Carruthers B, Jain A, DeMeirlier K, Peterson D, Klimas N, Lerner A, Bested A, Flor-Henry P, Joshi P, Powles ACP et al: "Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols." J Chronic Fatigue Syndrome 2003, 11(1):1-12.
  5. Jason L, Bell D, Rowe K, Van Hoof E, Jordan K, Lapp C, A G, Miike T, Torres-Harding S, DeMeirleir K. "A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome." J CFS 2006, 13:1-44

___
Dr. Bell's Disclaimer: Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

Note: This information has not been evaluated by the FDA. It is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.



Please Discuss This Article:   Post a Comment 

Do nothing and feel OK?
Posted by: liztom
Apr 23, 2008
Interesting that Dr Bell says if a PWME does absolutely nothing for a couple of days they usually feel pretty good. He seems to be talking about a different illness from mine - I've spent months in bed unable to do anything and always feel dreadful. I know of lots of others in the same position.
Reply Reply

 
months in bed
Posted by: rosedale
May 7, 2008
liztom, I've had ME(CFS) since 1985 and fibro since 1994. Have you pursued a fibro diagnosis? They are very different in some ways, and fibro can knock you down and keep you there. So can ME, but I had improved some with it until I got fibro.

 

 
Do nothin and feel OK?
Posted by: jjoys
May 3, 2008
I had a little flag go up in my mind too when I read this. I might feel a little better after a day or 2 of rest, but i wouldn't call it okay. But I think Dr. Bell may have just had a poor choice of words. Surely he knows ME/CFS better than this. I do wish docs would be more careful about their choice of words.

 

 
Agree with you.
Posted by: Heatherbell
Apr 23, 2008
I am not always in bed, but I do not have one good day!! The small tasks of everyday living (shower, prepare food, etc) are always tiring. But this article also does not address the crash after even brain activity, and the cognitive functions etc. I have read about the mitochondrial dysfunctions before and take the various supplements suggested for this, but notice no improvements. The article is interesting, but does not cover enough I think. I definitely feel worse after shopping, as Dr Bell says, and for days, but I do not feel very well at any time!

 

 
used to be confined to bed, now, not cured, but able to do much more
Posted by: twinsmom528
Sep 28, 2008
I am so sorry to hear that you are feeling so dreadful. I, too, felt that way for several months (doing nothing) and even once or twice really believed I would die-but I didn't die-at the time I was angry that I didn't die, but now I am OK with it because I am actually doing better.

It was the linking of CFS to mitochondrial disease that prompted me to buy a mild hyperbaric chamber. I went in it for one hour twice a day, breathing 100% oxygen. After several weeks I noticed a difference, and now (using it about 4 months) I am at the point where I can go shopping for an hour or two, but "payback" usually lasts three days or so. But still the hyperbaric chamber gives me a "boost" so even though I don't feel normal, I don't feel dreadful either.

 

 
replying to: liztom
Posted by: forb
Aug 13, 2008
Same here. I would like to think that a cure is found, but I am tired all of the time, without reprieve. Fortunately I seem to be on the very mild end of the spectrum, inasmuch as I don't seem to need to sleep frequently but only once a night like anyone; but I'm still tired throughout the day all of the time without it being alleviated by sleep (that is, I feel fresher, but never completely recovered).

 


Multi-day excercise test
Posted by: gerardaalderink
Apr 23, 2008
Hello, I'm very glad with this article. In my opinion it is coming very close to the core of our disease. And yes, have been wondering for some time, why this has not been studied at more locations in the world. In our country we have problems with the government not willing to spend money on this kind of studies. They only do a little bit with CGT and GET, which is not good for most of us. In the Netherlands the CFS Research Centre in Amsterdam ( http://www.cfscentrumamsterdam.nl/CFS%20intro%20English.htm ), Vermeulen et al. is now in the final stage of a study with more than one hunderd CFS-patients. They all do two excercise tests as described in the article. They also do many blood tests and psychological tests like Rand 36 and CIS20 in order to exclude other possible causes of fatigue Don't know the exact numbers, but know that the outcome is about as predicted in the article. Best Regards to all Gerard The Netherlands
Reply Reply

Mitochondrial Dysfunction
Posted by: chdeevey
Apr 23, 2008
I am very interested in your finding regarding Mitochondrial Dysfunction and CFS. As a long time sufferer, I have endured many types of treatments, and though I consider myself "functional", I still have so many bad days. I exercise as much as possible, but cannot plan on doing this on a regular basis, because I suffer much like the patients in the article. Daily exercise is out of the question. How can I get this test done, and if it proves positive, what actions can be taken, if any? Is there any link to this and adrenal dysfunction, which I also seem to suffer from (does anyone else?) Thank you.
Reply Reply

 
Some things that may help
Posted by: DiamonDie
May 23, 2008
You don't really need a test, you can try mitochondrial supplements anyway. Carnitine (1-3 g a day, more if you can afford it), coenzyme Q10 (100-400 mg a day, idebenone may be even better but is more expensive), lipoic acid (200-600 mg of alpha lipoic acid, 100-200 mg of R lipoic acid) and D-ribose (10-15 g a day) would be worth a try. Resveratrol might also be helpful - I don't know of anyone who has tried it for CFS/ME, but it has been approved as an orphan drug for MELAS, a mitochondrial disease (it is still available as a supplement). Melatonin is also thought to protect the mitochondria.

There are some medications that can help, but they are all very experimental. Dichloroacetate (DCA) has been tried for mitochondrial diseases and cancer, but is not approved for any use. Someone I know started taking it for CFS/ME, but I haven't heard back from him. IMO the medications are all too risky, but the supplements can be quite helpful.

I'm not sure if there's a link between adrenal insufficiency and mitochondrial dysfunction. However, there might be one, considering that almost all of us have adrenal problems.

"Exercising as much as possible" is usually a bad idea.

 

 
Adrenal Dysfunction
Posted by: bboomer
Jul 22, 2008
With all the signs coming out precidicting CFS I was hoping for Adrenal Dysfunction, so I could just pop a cortisol pill daily. no such luck adrenal function completely normal

 


mito test is already available.
Posted by: circle2
Apr 23, 2008
i wonder if dr.bell is aware that there is already a mitochonrial test being used to diagnose and treat people with cfs. its been done in the uk through biolab for the past few years, the test stresses the mitos to find out where the problems are, they can then be addressed with: magnesium, q10, b3, ribose, carnitine, etc. it has been documented on this site already: http://www.immunesupport.com/library/showarticle.cfm?id=7495&t=CFIDS_FM http://www.drmyhill.co.uk/article.cfm?id=381 and dr myhill's free book here: http://www.drmyhill.co.uk/article.cfm?id=362
Reply Reply

ME/CFS as a Mitochondrial Disease
Posted by: PenFlorida
Apr 23, 2008
Dr.Bell describes my current experiences exactly. Good day, bad day, depending on how much I do but no accumulating effect that could be described as progress. Another piece of the puzzel has fallen into place. I've been dealing with this over 6 years now and maybe off and on my whole life. There have been times when I'm just so sick even doing nothing doesn't help but that is not what I'm experiencing now. I've been on Cymbalta for 6 weeks and it has helped.
Reply Reply

post-exertional malaise
Posted by: Susan17
Apr 23, 2008
I started experiencing post-exertional malaise 2 or 3 years ago and had to stop exercising completely. When I researched the symptom picture, there was virtually nothing on it. I'm glad to see this topic being addressed and hope to see treatments developed in response to the data. Note to other sufferers: since I began taking Omega 3 oil in the form of fish oil 8 months ago, my muscle recovery time has improved tremendously! Be careful to choose the highest quality of fish oil, though -- all fish oil is NOT alike.
Reply Reply

Interesting but I just want to feel better...
Posted by: questus9
Apr 23, 2008
This is interesting information, and the part about post-exertion fatigue is certainly not news to me, although my fatigue level is always high. What if 'felt' like reading this though reminded me of seeing Dr. Cheney 20 years ago and listening to him explain the ATP cycle as if 'Voila!'...I remember listening patiently, and then saying, 'that's very interesting, but I just want to feel better, and be able to live my life again'... So bravo to all those doing research, but after 20 plus years...I just want to feel better and live my life again. It's difficult for me to get excited about more 'interesting information'...
Reply Reply

 
Feeling better with mild hyperbarics
Posted by: twinsmom528
Sep 28, 2008
It was the link between CFS and mitochondiral disease that prompted me to find out more about mitochondrial disease and a story about a young girl born with a mitochondiral disease who nearly died from it, but her mother saved her through getting hyperbaric treatments for her.

I bought a mild hyperbaric chamber and use it regularly. It has helped me more than anything else I have tried, though I am not cured yet. I used to be bedridden, but now I can be active at home for several hours a day without "penalty". Shopping still sets me back for a few days, but maybe more months of treatment will result in more improovemnt.

 


Thank you Dr. Bell
Posted by: Jacquie
Apr 23, 2008
This article describes exactly what I am now going through and have gone through for quite awhile. Over two weeks ago I pushed myself by walking all over New Orleans while on vacation. Ever since I got back, I've been in pain and totally fatigued. I called my doc today for some prednisone as I am not getting better and the pain is getting to me. Thank you so very very much for putting this article out for everyone to read. I also have Hughes Syndrome and rheumatoid arthritis.
Reply Reply

Mitochondrial Disease
Posted by: jmkinsey
Apr 23, 2008
I'm with Questus9. This is indeed interesting, but I just want to feel better!
Reply Reply

Anti-bodies
Posted by: kathyCFS1989
Apr 23, 2008
Before I was diagnosed with CFS in 1990, it was 1989 that I actually got sick. Many doctors at that time were not familiar with it, and either was I. I was in denial for quite a while. I was a high income earner ,and had no time for this. I had a fever for at least 6 months,swollen glands,severe fatigue,balance problems,slurring words and talking backwards sometimes. (Quite embarrassing when I was with a client trying to close a million dollar sales job !) I could not do math. Every time I used the calculator I came out with a different balance. I thought I had early alzheimers. My mind raced. I got lost in my own neighborhood while driving ! Anyway ,the first doctor I went to did some bloodwork. I had High anti-mitochondrial antibodies. And High anti-microsomal antibodies. He gave me anti-depressants. I took one and threw the rest in the garbage. I told him I wasnt depressed ,I was sick. Fix me ! I asked him to do an ANA....he reluctantly did ,and it was positive . In 1990 I finally found a doctor that diagnosed me. The blood work at that time had to be sent to California. It was the only place that could do the helper/suppressor ratio. I had EVERY blood test positive at that time , in order to diagnose it. In the old days it used to be called "Chronic Epstein Bar Syndrome" because everyone had HIGH anti-bodiese to Epstein Bar. Early Antigen and Nuclear antigen. Anyway, I wonder if the anti-mitochondrial antibodies was a warning of the onset of CFIDS ??? Kathy PS- One wierd thing in one of my CFS meetings I would go to. I tried to find something in common between us all. One day there were only 7 people in group, and I told them that a month before I started the fever I went to the Key West and swam with the dolphins. The lagoon was very green and not alot of fresh water and I did inhale some of the water. My husband did not. Anyway, there were 3 people out of 7 that had swam with the dolphins. A cross-species bacterial maybe ? Who knows. I am sure not everyone that has CFS swam with Dolphins. It may have been a coincidence.
Reply Reply

 
Dolphins!
Posted by: malony33
Apr 28, 2008
How very odd and interesting, Kathy!

Many years ago, I swam with dolphins also! However, I cannot remember - big surprise there - if it was before I became so ill with FMS/CFS (onset was 1991).

It does make me wonder if there's a connection...good fodder for a study. Not too many people, statistically speaking, have gone swimming with dolphins.

Barbara malony33@aol.com

 

 
CFS
Posted by: barbsigns
Apr 24, 2008
I have had Fibromyalgia most of my life but for the last 7 years I have been increasingly "sicker" with wierd "attacks" every 30 minutes--anxiety, air hunger (trouble getting enough air), heart palpatations, nausia, sick all over and profuse sweating.

I have gone through 25 doctors, surgeons, specialist, tests etc. No one knew what was wrong with me.

After realizing these attacks were not FM and/or hormonal I started doing research while spending days on the couch. I have since been diagnosed CFSID with Epstein Bar, Mycoplasma pn. and (non STD) Chlamydia pn.

In November 2007 I came across an artical on Lyme. Consulted a "Lyme Literate" doctor (very important what kind of dr.) and guess what--Lyme--late stage. Hard to cure because of the many co-infections the tick passes on.

New research is showing that Lyme is a "great mimicker" of many diseases such as CFS, FM, MS, Parkinson and many more. Your symptoms, fever, confusion, balace, swollen glands, speech problems, fatigue--they all are what I also had, in addition to those "attacks."

Frustration in trying to concentrate (brain fog), falling (broke ribs, bruised all over etc.) off balance, sleep problems, anxiety, pain, and so much more.

Do some research on line, find a "Lyme Literate" dr. in your area or travel to one and get evaluated. Most of these diseases we have today have an infectious element but test are specific and must be sent to the right lab. Lyme most often will not even show on blood test because it leaves the blood and goes into the cells and the immune system stops making antigens against it. Lyme is contracted from the tick but can also be contracted from misquitoes. Check it out--it's worth it. Good Luck!!!!!!!!!!!!

 


I have CFS and Mitochondrial Disease
Posted by: BBall
Apr 25, 2008
This article really hits at the heart of my experience. I have been diagnosed both with CFS and with a mitochrondial disorder, but by different doctors in different specialties. When I first became very ill in 1997, blood testing showed that my CPK levels were off the charts, and CPK is the primary marker, as I understand it, for mitochrondrial disorders. I had a number of tests done looking for the specific disorder but nothing showed up. Then I had a muscle biopsy. The only abnormality the biopsy showed was a low CPT level. CPT deficiency is one of the recognized disorders of muscle metabolism. However, since my levels were only low and not totally absent, I could not be diagnosed with CPT deficiency. All of this work-up was done in the neurology dept. at Cleveland Clinic. After several years of bouncing from one doctor to another complaining of activity intolerance, muscle weakness, etc. I got the diagnosis of CFS from a nationally known CFS specialist. I got the usual advice about CFS but no treatment that returned me to my normal functioning. Ten years later I am still activity intolerant. My muscle weakness is considerably worse. I have to be very careful to avoid throwing myself into massive muscle pain. The disks in my back are all moving out of place because my muscles are getting so weak. I have taken the exercise-based metabolic testing mentioned in Dr. Bell's article. I actually flunked it on the first day, so I wonder what my performance would be like on the second day. Last year a new neurologist advised me to again have a muscle biopsy. He said a lot of progress had been made since the one I had in 1997. Based on my history, he is sure I have a mitrochrondrial disorder. He knew nothing about the possibility the CFS might be a mitochrondrial disorder. I think there may be a lot of people like me who straddle the line between CFS and demonstrable mitochrondrial dysfunction. I wish doctors like Dr. Bell could get the neurology disciple to study us.
Reply Reply

My two older brother suffered from this too.
Posted by: Wagar
Apr 26, 2008
This miochondrial information was not part of my theory. Oh well. As a kid I now figure I had ME-CFS, ADHD and depression but who knew what to do with strange symptoms? Sixty years ago no one would have believed these diseases. My older brother came back from the service sweating and twitching and in a few years he couldn't make a decent living. My next older brother, after having early business success, was ruined by his late thirties. All of us suffered great fatique and depression, some of us drank too much and two of us could not settle down. Our Grandpa who immigrated from Denmark also suffered greatly from fatique, and having learned ME-CFS is genetic, I based my theory on his passing it to us. Now I don't know. I still have depression, ADHD, ME-CFS and now diabetes. It's all being treated but without the help, I would have gone looney decades ago. Can anyone enlighten me? Is it genetic?
Reply Reply

comment abt. exercise test, ? abt. other symptoms
Posted by: wprwl
May 3, 2008
I've been struggling with CFS symptoms since 1998, after a respiratory infection, and have an official diagnosis of fibromyalgia (which I think I've had to a degree my whole life without being aware of it). Over the years, I've tried to maintain a basic fitness level and have been able to build up a fair degree of cardio fitness by using great caution and persistence, limiting the number of workouts. I had built up to being able to walk, hike, and even run (VERY SLOWLY) 3-4 miles up to 2x a week (more often once a week, with quite a few missed weeks), 3x if I was very lucky. As long as I progressed slowly, I didn't feel too terrible afterwards. Granted, not able to do much else, but more of a good tired feeling than the nasty fatigue other stressors produce. I can't do anything like that now, as I have had a bad year and let my exercise slip, but I still stretch, swim and do water aerobics, lift light weights and walk every once in a while. What I found I could not tolerate to any degree was regular weight lifting, particularly using Nautilus equipment. I was surprised, as the resistance equipment at Curves hadn't bothered me and I had used the Nautilus in college prior to 1998. The Curves equipment modifies itself to your body; the other doesn't, and after a few weeks' effort, during which I struggled to complete a moderate Nautilus routine very slowly 2x a week, I had to quit. My brain was completely scrambled; I knew it was time to end it when I sat in a parking lot, realizing that I had "lost" a Target store I had been in dozens of times, and that I could sit in my car all night and still not remember where I had put it. A long way to a point: while I never function very well, my metabolism fares far better w/a cardio workout than serious weight training. Is this unusual? Would it affect the 2 day testing proposed? Another question: While I have some pain and muscle fatigue, my most bothersome symptoms by far are cognitive dysfunction and a seriously disrupted circadian rhythm, which I haven't yet been able to correct. How do these problems fit into the mitochondrial thesis?
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Supplements and NAET
Posted by: DiamonDie
May 27, 2008
They are extremely safe and they have loads of benefits. E.g. lipoic acid prevents cancer and Alzheimer's and Q10 is so good for the heart it is used to treat congestive heart failure. Unfortunately I don't think it is possible to get sufficient quantities of them from food. It might be possible by eating very high quantities of something like spinach, but it's difficult to find information about how much of these things the foods actually contain. You could get carnitine by eating loads of red meat, but you probably know that isn't very healthy otherwise. And since D-ribose is taken in doses of 10-15 grams a day, even if it's found in food I doubt you can manage to get it in sufficient quantities to have any effect. NAET is quackery. It only works through the placebo effect. If you have benefited from it, good for you, but there are cheaper ways to treat allergies with placebo. Anyone who told you that you had 16 viruses in your body was making it up. Unfortunately there are many practitioners who are just looking to make money off vulnerable people. They know how powerful the placebo effect can be, but the patients don't know it. Here's some real information about NAET: http://www.chirobase.org/06DD/naet.html This is just the perspective of a medical writer (who has had CFS/ME for eight years, just like you). I know you probably won't believe what I'm telling you in the previous paragraph, but it is true. As far as quackery goes, NAET is harmless, just like homeopathy, but I bet it's not harmless towards your wallet.
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Two Day exercise Test
Posted by: sydneysailor
Jun 7, 2008
I recently experienced my highest energy levels after suffering from chronic fatigue for the past five years. I had just come to Australia and was on a break of approximately two months before commencing study here. In this time I gradually built up my fitness to the extent that I could cycle at an intense speed for 60km approximately every second day in addition to swimming 50 laps of a 25 meter pool without pause. The days in between were spent exercising to a measure of roughly 50% but still above what the average person would exert themselves to. Since i returned to my studies at university and experienced some prolonged periods of high stress due to the strain put on my concentration I have gradually deteriorated and more rapidly since I contracted a cold that I am close to incapable of fighting due to the abnormally insufficient immune system I have due to CFS. My main point is that I believe a level of high physical fitness can be attained in some cases of chronic fatigue but the main obstacle is maintaining a stamina of concentration that allows one to function in a typical everyday environment consisting of frequent mental challenges. I wonder if similar results have been concluded from any other studies undertaken?
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Regarding Dr. Bell's article
Posted by: issnowwhite
Sep 25, 2008
Wow, I came across this article from one of the groups I belong too. I want to thank that person for putting this link out there. I found it very informative. I am making copies so when I go to see my doctors, I can give each a copy of this article. My neurologist Dr. O. Gerber of Stony Brook University Hospital in N.Y has been with me many years, I call him my miracle worker. He has been the only doctor and believe me out of many, that has helped me and helps me function as best as I can. He believes I have Mitochondrial Disease and that it points to Mela's. I have had many, many test by doctors, and I still went down hill with out any proper or good guess of what it could possible be. Till I met Dr. Gerber. He ordered a biopsy, and it showed only some ragged red fibers, not totally conclusive to Columbia Pres. Hospital in NY. I was totally dissatisfied with the service, doctors etc. I was not able to join MDA without a definitive diagnosis either. But yet my Nero. still believes this is what I have, and treats me the best that he can. This article that Dr. Bell has written explains me to a Tee. It was like he was writing about me and my symptoms. My life has deteriorated quite a bit and this has been going on for quite a few years. So thanks to Dr. Bell and his article, hopefully by showing this to my doctors, they can read about this disease me and my Dr. Gerber feel I have. I hope this get a lot of people moving to find out more about this type of disease and testing.
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ME/CFS as a Mitochondrial Disease
Posted by: uffizi
Nov 28, 2008
This article describes me precisely. I've been like this for 20 years or more but I pushed myself to my limits to work until I retired. Fortunately I had skills which enabled me to 'temp' so I could work a few hours a day and sleep during the evening. I didn't know what was wrong with me and I tried walking - 5 miles exhausted me and I couldn't walk and talk. My GP enrolled me in the gym for 3 months and that made me feel worse. I live in the UK, I have constantly been told by my GP that there is nothing wrong with me, so I have spent a lot on alternative investigations which showed 'my immune system was totally shot up'. I'm 'running on adrenalin' and much more. My GP finally told me earlier this year I have ME. I felt vindicated, started to research this and came across Dr Myhill. My blood tests showed mitochondrial disease. She prescribed magnesium injections every day, along with a host of vitamins, minerals, l-carnitine, coQ10. So I've been on the supplements for a few months and I am managing my life in much the same way. I have no family around, no one calls to see me and if I don't feel well enough to go out I see no-one for days. I can't have magnesium injections as my GP said I cannot be under a private doctor and the NHS. To go private is too expensive, unless I can see a cure or some benefit. I've been referred to the ME clinic but have been waiting since April for an appointment. A cop out as far as I can see. What a lonely life I have to look forward to in retirement. As I look back over my life, all my energy has gone into survival. I think I need some moral support but where from?
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ME/CFS, Myhill, UK
Posted by: Allie2727
Mar 29, 2010
I also see Dr Myhill. It is not true that you cannot have a private doctor and still get treated by your GP - on the injections, I just taught myself how to do it when my GP would not help. As this was posted a while ago, I guess you may have figured this out by now! I really hope more research is done on this soon - and, more importantly, that it gets some publicity. Incidentally, doing the Myhill treatment has changed my life. I am still very sick, but no longer bedbound.

 



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