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Elizlea
Wed, Mar-08-06, 04:53
Here's a link to an interesting theory about CFS and Fibromyalgia (My Mom and I have CFS).

The mitochondrial part of the cell is (the fuel engine of your cells and hence your body) damaged, by a multitude of things. The muscles and the brain require alot of energy, and if mitochondria are damaged they can't get the energy they need!

Here's a link with more info:

http://www.drmyhill.co.uk/article.cfm?id=373

and another GREAT site is

www.immunesupport.com/

Zuleikaa
Mon, Mar-13-06, 17:33
And vitamin D regulates the "Mitochondrial DNA" gene expression. Without enough vitamin D the cell mitochondria is damaged and repeated via cell generation. Vitamin D orders the damaged cells destroyed and repairs the sequence so that healthy cells can be ;roduced.

colinjn
Wed, May-03-06, 11:20
Any thoughts on the latest news from the CDC on the Kansas study?
Colin

fibroart
Sat, May-06-06, 04:15
ummmmmmmmmmm

miristar
Wed, Jun-07-06, 09:32
Elizlea -

So, can I ask - are you taking D-ribose, etc as the article says? I have heard it can reverse a lot of the FM symptoms in about 10 days... It's fascinating to me that the D-ribose protocol also has to do with phosphate in the body, just as guai does.

I'm in the initial stages of shock and coming out of the denial of whether I may have FM or not, it was suggested to me last week by a new specialist I went to see for my back. I then discussed it with my PT, who wasn't even surprised to hear it!

thanks, Miriam

VegGrrl
Fri, Jun-16-06, 20:31
Isn't it funny how that happens sometimes? I ended up finding out that my GP had diagnosed me a whole year before telling me about it! (I saw him for a few years before then, and I didn't have my first bad flare till then...I guess I should thank my lucky stars he had been paying attention, because I just thought I was going nuts! But once I had to stop working and kept calling him for new pain pills, he decided to tell me his suspicions and send me to a rheumy to confirm.)


Elizlea -

So, can I ask - are you taking D-ribose, etc as the article says? I have heard it can reverse a lot of the FM symptoms in about 10 days... It's fascinating to me that the D-ribose protocol also has to do with phosphate in the body, just as guai does.

I'm in the initial stages of shock and coming out of the denial of whether I may have FM or not, it was suggested to me last week by a new specialist I went to see for my back. I then discussed it with my PT, who wasn't even surprised to hear it!

thanks, Miriam

VegGrrl
Fri, Jun-16-06, 20:34
My new GP was telling my yesterday how his friend is a Neurologist and agrees with the Mitochondrial theory too. He thinks the problem originates in the digestive system though. He suggested taking CO-Q10 200mg in the morning and 100mg at night.


[QUOTE=Elizlea]The mitochondrial part of the cell is (the fuel engine of your cells and hence your body) damaged, by a multitude of things. The muscles and the brain require alot of energy, and if mitochondria are damaged they can't get the energy they need!

VegGrrl
Fri, Jun-16-06, 20:58
I read the article at the link you posted, and noticed it had things in common with this article on Mycoplasma causing FM:

http://www.nexusmagazine.com/articles/mycoplasma.html

Specifically, the section about Blood Volume.

So maybe the Mycoplasma infection causes the Mitochondrial Dysfunction...? :idea:

After reading the whole article (yours), I also saw that they do include CoQ-10 in their suggested supplementation program. A local store that also has an online store sells a form that melts in your mouth, and were giving out samples. I noticed an increase in energy when I tried it, so if anyone's interested in it, let me know. Also, if anyone is trying to find a source of D-Ribose, I recently went to a lecture by Dr. Jacob Teitelbaum where he talked about one he was having success with.

Anyone trying treatments related to either of these (Mitochondrial or Mycoplasma) I'd really love to hear from you! :help: (I'd try them myself, but I'm running short on $$. Might try the Mycoplasma one once my insurance kicks back in sometime next week though...) :agree:

~Jen

VegGrrl
Wed, Jul-12-06, 00:17
I just started the cocktail of supplements suggested by Dr. Myhill.
Anyone else tried it?

I wonder if I should add some Vitamin D as well? (I was tested over a year ago, and my levels were on the slightly low end...)

I'm not too sure about the DNA supplement I'm using (though I have faith in the doctor who prescribed it) because it doesn't say how much it has in it. I had wanted to use the CorValen kind, but couldn't afford it!

Also, I was a little confused about whether she was saying to take L-Carnitine or Acetyl-L-Carnitine. Settled on ALC.


Here's a link to an interesting theory about CFS and Fibromyalgia (My Mom and I have CFS).

The mitochondrial part of the cell is (the fuel engine of your cells and hence your body) damaged, by a multitude of things. The muscles and the brain require alot of energy, and if mitochondria are damaged they can't get the energy they need!

Here's a link with more info:

http://www.drmyhill.co.uk/article.cfm?id=373

and another GREAT site is

www.immunesupport.com/

VegGrrl
Wed, Jul-12-06, 00:19
The upside being D-ribose doesn't make you sick for a year in the meantime!


Elizlea -

So, can I ask - are you taking D-ribose, etc as the article says? I have heard it can reverse a lot of the FM symptoms in about 10 days... It's fascinating to me that the D-ribose protocol also has to do with phosphate in the body, just as guai does.

I'm in the initial stages of shock and coming out of the denial of whether I may have FM or not, it was suggested to me last week by a new specialist I went to see for my back. I then discussed it with my PT, who wasn't even surprised to hear it!

thanks, Miriam

lozkiah
Fri, Nov-17-06, 21:45
Hi everyone,
This is my first time here but you all sound llike you may be able to help. I was diagnosed with fibro 5 years ago. I lost 45kg on low carb the first time with no problems however this year i have run into a stream of problems. I was gaining 1kg a week even thogh i was sticking to 1200 calories a day (low carb). Last week my doctor diagnosed me with severe Leaky Gut syndrome which in turn has stopped oxygenation of my mitachondria which is why i cant walk further than the letterbox. Because of the leaky gut my blood is severly toxic and now my liver is struggling to work.

To lose weight at the moment i cant eat more than 400 calories a day. I am on most of the supplements that have been mentioned on this website including a few others for toxins, bacteria etc. Does anyone have any ideas that may help my weight loss. Btw i have hyperthyroid and hypometabolism!!!! I am really desperate for help. Btw it has taken me 5 years to find a doctor who specialises in fibro.
:help:

colinjn
Sun, Nov-19-06, 11:48
Re Leaky Gut, You might want to try the Body Ecology Diet protocol, featuring Coconut Kefir. I have been watching her program for a few years and she seems to have great success with a lot of GI related issues.
You might have to do a search for the link, or perhaps adsense will give the link at the top of the page after I post this.

Good Luck!
Colin

Gailew
Wed, Nov-22-06, 08:44
I don't log on often anymore, but wanted to see if there was any reaction to the CDC finally accepting that CFS is a serious illness. Maybe now we'll see some research money going to the right places! (Read the book Osler's web for the whole wretched story)

I'm going to try the D-ribose formula as soon as it all gets here, and will post back when I can tell if it's helping or not. I entered a double blind study for it, and haven't found out yet if I got the real deal. But I'm voting for table sugar (placebo) since I gained water weight and never got more energy. But, then again, I didn't have all the other components in place.


Oh, I agree about the ImmuneSupport message board for those with CFS/FM. It's been very helpful for me.

Gailew
Sun, Dec-24-06, 18:00
Ok, I started on this regimen about the first of December.

This year has been the worst for me as far as the winter slump goes. My FM pain has racheted up beyond anything I've experienced before.

Now, the days haven't even started getting longer yet, and this past week I'm already pulling out of the worst of it. I'm thinking it just about has to be the d-ribose (plus the other products). It's the only thing I've done differently this month.

Zuleikaa
Sun, Dec-24-06, 21:31
I wonder if I should add some Vitamin D as well? (I was tested over a year ago, and my levels were on the slightly low end...)

Definitely give the vitamin D a try. 89 of tested people with CFS had low vitamin D levels.

CFS has been linked to vitamin D deficiency. As has fibro, leaky gut, Crohn's, etc.