CFS,mitochondrial diease, autism

Advocate

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A group in Hawaii has found that a great majority of tested CFS patients have a phospholipid in their blood that is very similar to ciguatera toxin (a marine protozoa toxin common in seafood poisoning) and is highly toxic to mitochondria.
I'd love to know if this is found in healthy controls at a lower rate. Gail Kanksy, of the NCF, just announced on CoCure that people can get the "ciguatera" test for free, for a limited period of time. I think it involves sending a specimen to Hawaii.
 

CJB

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I'd love to know if this is found in healthy controls at a lower rate. Gail Kanksy, of the NCF, just announced on CoCure that people can get the "ciguatera" test for free, for a limited period of time. I think it involves sending a specimen to Hawaii.
I talked to the Hawaii folks. They will do the testing for free, but you have to pay to have the blood collected, spun and shipped. ((I was told they will pay the FedEx on the first ten volunteers) I'm not in a position to do that now, but if anyone can help out, they should. They really want our blood.
 

Advocate

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Hi, all.

For what it's worth, Sarah Myhill and I drafted a review paper on all the published evidence we could find that point to mito dysfunction in CFS, and we found quite a lot. We submitted it to two journals in sequence and were turned down by both of them. We may try again.
Rich, I hope you do try again.
 

Advocate

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My father had Motor Neurone Disease (ALS) and his brother, my uncle, has retinitus pigmentosa (A mito disorder) as did their father. ...my son has Bipolar disorder and possible Aspergers.
Oh, how difficult this must be for you! I hope you and your son can get into an XMRV research study.
 

MEKoan

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This letter is fascinating because it lists many diseases related to mitochondrial dysfunction which are debilitating but treatable and NON PROGRESSIVE.

SNIP

From the letter itself:

Research has revealed that mitochondrial dysfunction is at the core of many common illnesses and chronic conditions such as Alzheimers disease, Parkinsons disease, diabetes, heart disease, obesity, osteoporosis, cancer and even the aging process. Autoimmune diseases such as multiple sclerosis, lupus and rheumatoid arthritis also may have a mitochondrial basis. There also is new evidence that mitochondrial dysfunction plays a role in the cause of some childrens autism.
Just for the sake of accuracy, Gerwyn, most of these diseases are progressive, not particularly amenable to treatment (with a few exceptions) and devastating.

If we are to join forces with the broader community of people dealing with mitochondrial dysfunction, I think we must stay informed as to the effects of other conditions where mitochondria is implicated.
 
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Gerwyn

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These diseases are not always progressive as in other mitochondrial disorders which almost inevitably end in death.The majority are treatable and arrestable whereas the genetic mitochondrial diseases are usually not.the authors name the disease as chronic.Things like osteoporosis obesity diabetes and so on can be managed by diet and excercise especially in the early stages.If" caught" they dont progress.the same goes for heart disease ,angina and so on.Progressive in this sense means inevitably going from bad to worse such as the congenital mitochondrial diseases .So I,m afraid that I don,t agree that these diseases are not particularily amenable to treatment.Arethoma for example can completely eradicated.Type 2 diabetes can be totally controlled in most people similarily osteoporosis and so on.There are new and effective treatments available even for Parkinsons and Alzheimer admittedly more difficult to treat--contrast this situation with classical mitochondrial disease where there is no proven treatment at all--these are truly progressive.I totally agree that we need to be informed as to the effects of other conditions where mitochondrial are implicated .
 
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Gerwyn

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Why is chronic fatigue syndrome not mentioned specifically?
Are these people even aware of CFS Feduka does not even suggest a mito disorder The canadian symptom complex does.My point is perhaps the WPI could make them aware.perhaps by inviting comment on the symptoms reported in terms of being consistent with a Mito disorder.At least it would draw the attention of this highly credible independent group
 

JPV

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In addition to Sarah MyHills recommendations on Mitochondria repair, I found this article very interesting...

Excerpt from: Enzyme-Rich Foods for Mitochondrial Repair

Degenerated, cancerous cells can potentially be reversed back to normal cellular function by utilizing specialized enzyme-active nutritional substances and select vegetable and fruit hydrogen acceptors. These enzyme-rich nutritional substances include: Saccharomyces cerevisiae live fluid yeast strain, raw crystallized (freeze-dried) red beets and red beet juice, raw blueberry juice, bromelain (pineapple enzyme), raw pineapple juice, raw red grapes, raw red cherries, carotene (specifically beta carotene).

Please note that Saccharomyces cerevisiae yeast strain is not to be confused with Candida albicans! Unlike Candida, Saccharomyces cerevisiae live fluid strain exhibits no negative influence on human cells, and in fact has been observed to have an antagonistic effect against Candida albicans. Most orthodox medical practitioners, and even many nutritionists remain unaware and unappreciative of the far-reaching health benefits of live S. cerevisiae yeast. Additionally, we must seriously consider the utilization of specialized green foods. Excellent green foods include: Barley Grass powder, Kamut Grass powder and Sun Chlorella. For the most effective hydrogen acceptor, we utilize a specialized freeze-dried red-beet crystals. For herbal fortification, we utilize a very special liquid extract formula Essiac.

Greater cellular protection can also be achieved by utilizing a specialized low-molecular antioxidant compound Anoxe. Based on clinical observation and experience, Anoxe may be the Ultimate antioxidant compound, with high efficiency and great safety in restoring the ROS/antioxidant balance. Anoxe affords an anti-aging potential of scientific correctness, and is excellent for cosmetic enhancements, specifically for bad skin and wrinkles.
I wonder if anybody with more experience on the subject can comment on these recommendations?
 

MEKoan

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Hi Gerwyn,

I totally misunderstood the point in your first post. Sorry - my error. :ashamed:

Thanks for taking the time to explain.

Koan
 
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Gerwyn

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Hi Gerwyn,

I totally misunderstood the point in your first post. Sorry - my error. :ashamed:

Thanks for taking the time to explain.

Koan
Hi Koan,

My pleasure My wording could have been better i have spent too much time dealing with the medical profession and I can slip into "shorthand" I will have to watch that in future sorry if it wasn,t clear in the first place
 

Advocate

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Fukuda does not even suggest a mito disorder. The canadian symptom complex does.
I never thought of that! That's a terribly important distinction. Is there one part of the Canadian consensus definition that suggests that, or is it the combination?
 

FernRhizome

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This is a great letter! Two of my mitochondrial doctors signed it: Vamsi Mootha and Dr. Bruce Cohen. There are already two other threads on this forum about mitochondrial cytopathy and CFS. I suggest we merge this letter with those threads?????

Yes, the mitochondria world is VERY VERY VERY aware of CFS. Don't worry! They know that we are part of their group. As I've posted in the other mito thread, Vamsi Mootha is working on some phenomenally designed new testing that will let a single drop of blood from a finger prick be tested for all 200 enzyme reactions in the mitochondria. That will bring fast diagnoses. It's being done in animal models and hopefully will be available for humans within a couple of years.

Also, if we don't move this thread could someone add the word "mitochondria" to the thread title? That's important as that's the topic of this letter and then other folks will find the thread, though perhaps merging with the other thread is more sensible?

See the other mitochondrial threads for more information. ~FernRhizome
 

FernRhizome

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Hi folks:
Check out the Letter to Obama which appears just a few titles above this thread title. That letter is entirely about mitochondrial disease and research funding and is signed by two of my mito doctors: Bruce Cohen and Vamsi Mootha. I've suggested on that thread that they add the word "mitochondria" to the thread title and/or merge it with this thread. It's a great letter!!! And yes, those mito doctors know about CFS and want to help us too. ~FernRhizome
 

Frickly

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Thanks FernRhizome! JPV, your post prompted me to go warm up my juicer. :)

Fern, Whats the title of the thread?
 
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Thank You FernRhizome!
As a CFIDS caretaker (my son) and Patient.....we were tested for this disease immediately by our sepcialist at our first visit, to rule out Mitochondrial Disease. I would think all CFS/CFIDS/ME/FIBRO Docs would do this testing if they suspect the disease could be present. Especially when they see a sick Mother and child.
Blessings,
Julia
 
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JPV:

One has to be careful with Pineapple (it reacts with many meds) and red Beet Juice (It affects the Blood-use in small doses!-Wonderful...). Some of what you speak of is in the ALT Rotational Diet that my son and I were put on. This is a common diet for Cancer, AIDS and Transplant Patients. The diet cleanses and Nourishes, but will not replace nutritional deficiences immediately, so it is important that diet and supplements be used together in the beginning. It is my experience that medium-severe deficiences should be addressed immediately by a licensed specialist who can take the appropriate samples, then based on test results ....prescribe/compound the appropriate vitamins and minerals. Once the deficiencies are cleared....diet will work great alone. Blessings, Julia...
 

CJB

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In addition to Sarah MyHills recommendations on Mitochondria repair, I found this article very interesting...

Excerpt from: Enzyme-Rich Foods for Mitochondrial Repair



I wonder if anybody with more experience on the subject can comment on these recommendations?
I know that the saccharomyces yeasts are present in kefir. Obviously, not sure about that particular strain. I'm really interested in trying to compose a diet rich in the nutrients we need. So far, the kefir seems to be a great starting point.