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Hi there

Has anyone tried ribose or creatine, if so was either any help. Ribose says

it should help with fibro plus heart conditions and oxygenation

n

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  • 3 months later...

Thanks for this info. I have ordered D-ribose to try as well, but

didn't know those with a Mediterranean background are more likely to

be deficient. I am of 100% Greek descent, so this is an interesting

lead. My mum is also sick, and my sister has some traits (like

anxiety, problems sequencing info) that I've thought were related to

what we have.

Interesting about FMF. I was just thinking of this yesterday,

wondering if any doctor had thought to rule it out in my case.

> I started taking D-Ribose (cardiovascular research brand from

vitaminshoppe), starting with just 1 gm (1/4 tsp) 3X day right before

meals because I'm nervous about the sugar. So far no bad effects. It

was absorbed quickly under my tongue.

> Just received Dr. Conley newsletter who is recommending ribose as

a new breakthrough. He says the body has a hard time making it and

many are deficient in one of the necessary enzymes G6PD, especially

people of Mediterranean background (includes some Irish ). He says 5

gms twice a day in water or juice with meals.

> This reminded me of a co-cure article (May 30 2005) about Familial

Mediterranean Fever with FM type symptoms acquired genetically and

found in old Appalachian families possibly of European descent. I

think they both mentionned defense of malaria. FMF involves lack of

pyrin to deactivate inflammatory response. This patient had pain in

side, relieved by trial of colchicine.

>

> >next week as he mentions all the stuff I have with the bad upper back

> >and the pain under the ribs ect.

>

>

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  • 7 months later...
Guest guest

Hi, all.

I just want to reiterate that I think the value of D-ribose in CFS

will mainly be in helping people to bounce back from a " crash " more

rapidly, because it should help to rebuild ATP when it temporarily

goes down low.

It may also help a little with baseline ATP, but I suspect that in

most cases it will not get to the basis of the low-ATP issue.

Although your case is still a puzzle to me, , I think that in

many CFS cases, the basic pathophysiologic issue is depletion of

glutathione, leading to partial blockades in the oxidative

metabolism (Krebs cycle and respiratory chain), and also leading to

the buildup of toxins and infections, which in turn can block

various enzymes involved in ATP production and use. I think

glutathione is held down by a vicious circle involving genetic

variations higher up in the sulfur metabolism, including the

methylation cycle and the cycles linked to it, including the folate

cycle, and also transsulfuration in some cases. Until these are

identified and dealt with directly, I suspect that it will be

difficult in most cases to get the glutathione back up to normal,

and until that is done, I don't think the person will be able to

overcome the fatigue and the other symptoms of CFS.

Rich

>

> Yes - nothing changed.

> > > Has anyone tried D-Ribose??

>

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Rich,

Montiff makes a ATP supplement. Would that also be a way to bring the ATP back

up after a crash???

Janet

rvankonynen <richvank@...> wrote:

Hi, all.

I just want to reiterate that I think the value of D-ribose in CFS

will mainly be in helping people to bounce back from a " crash " more

rapidly, because it should help to rebuild ATP when it temporarily

goes down low.

It may also help a little with baseline ATP, but I suspect that in

most cases it will not get to the basis of the low-ATP issue.

Although your case is still a puzzle to me, , I think that in

many CFS cases, the basic pathophysiologic issue is depletion of

glutathione, leading to partial blockades in the oxidative

metabolism (Krebs cycle and respiratory chain), and also leading to

the buildup of toxins and infections, which in turn can block

various enzymes involved in ATP production and use. I think

glutathione is held down by a vicious circle involving genetic

variations higher up in the sulfur metabolism, including the

methylation cycle and the cycles linked to it, including the folate

cycle, and also transsulfuration in some cases. Until these are

identified and dealt with directly, I suspect that it will be

difficult in most cases to get the glutathione back up to normal,

and until that is done, I don't think the person will be able to

overcome the fatigue and the other symptoms of CFS.

Rich

>

> Yes - nothing changed.

> > > Has anyone tried D-Ribose??

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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In my experience you need to reduce your toxin load of your system before

adding things to regenerate your energy levels. My energy levels are returning

since I have swictched to a more alkaline diet and I suspect that things will

normalise when I add supps to alkalise my system via Cal/ Mg.

Regards

CS

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Where do you have an ATP test done?

Lee

Re: Re: Ribose

Rich,

Montiff makes a ATP supplement. Would that also be a way to bring the ATP

back up after a crash???

Janet

rvankonynen <richvank@...> wrote:

Hi, all.

I just want to reiterate that I think the value of D-ribose in CFS

will mainly be in helping people to bounce back from a " crash " more

rapidly, because it should help to rebuild ATP when it temporarily

goes down low.

It may also help a little with baseline ATP, but I suspect that in

most cases it will not get to the basis of the low-ATP issue.

Although your case is still a puzzle to me, , I think that in

many CFS cases, the basic pathophysiologic issue is depletion of

glutathione, leading to partial blockades in the oxidative

metabolism (Krebs cycle and respiratory chain), and also leading to

the buildup of toxins and infections, which in turn can block

various enzymes involved in ATP production and use. I think

glutathione is held down by a vicious circle involving genetic

variations higher up in the sulfur metabolism, including the

methylation cycle and the cycles linked to it, including the folate

cycle, and also transsulfuration in some cases. Until these are

identified and dealt with directly, I suspect that it will be

difficult in most cases to get the glutathione back up to normal,

and until that is done, I don't think the person will be able to

overcome the fatigue and the other symptoms of CFS.

Rich

>

> Yes - nothing changed.

> > > Has anyone tried D-Ribose??

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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Guest guest

Hi Leona, the only place I know of is over here in the UK, a lab

called Biolab, if you google you will find info about the lab and the

CFS ATP profile test they run.

BW,

Sheila

> >

> > Yes - nothing changed.

> > > > Has anyone tried D-Ribose??

> >

>

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>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested in

any treatment discussed here, please consult your doctor.

>

>

>

>

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Guest guest

Hi,

Also Acumen in the UK runs these tests.

Rosie

Hi Leona, the only place I know of is over here in the UK, a lab

called Biolab, if you google you will find info about the lab and the

CFS ATP profile test they run.

BW,

Sheila

> >

> > Yes - nothing changed.

> > > > Has anyone tried D-Ribose??

> >

>

>

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested in

any treatment discussed here, please consult your doctor.

>

>

>

>

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  • 1 year later...
Guest guest

Dear Sue,

I tried it when I was being treated through the Denver Fibro & Fatigue

Clinic in 2006. Didn't do a thing for me. I've read that it's helped

some people, but I wasn't one of them. I think this has been discussed

in the past, you might want to search the archives on " ribose " and see

what turns up.

Best wishes,

Marcia on

in Salem, Massachusetts

>

> Has anyone tried Ribose? Has it helped you? What did it help?

>

> Have you found any brand to be better than another?

>

> Thank you!

>

> Sue

>

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  • 11 months later...
Guest guest

Has anyone used Ribose (D-Ribose)? I am trying it for muscle energy (ATP) and

it really makes me feel REALLY " caffeinated " . I was wondering if that was

normal. Amy

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I tried it for about a month and didn't see any difference so I stopped.

Roni

<>Just because something

isn't seen doesn't mean it's

not there<>

From: amygreen53 <amygreen53@...>

Subject: ribose

hypothyroidism

Date: Tuesday, March 24, 2009, 2:18 PM

Has anyone used Ribose (D-Ribose)?  I am trying it for muscle energy (ATP) and

it really makes me feel REALLY " caffeinated " .  I was wondering if that was

normal.  Amy

------------------------------------

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The planets spin because the chances of the average rotational momentum

being zero for a mass of collapsing/congregating rocks in the condition

of the pre-planitary debris is virtually zero. AND because they are not

tidally locked to another body, such as the Sun.

..

..

>

> Posted by: " a DeVelbiss " gabrieladevelbiss@...

> <mailto:gabrieladevelbiss@...?Subject=%20Re%3A%20Ribose>

> gabrieladevelbiss <gabrieladevelbiss>

>

>

> Thu Mar 26, 2009 9:27 pm (PDT)

>

> [...]

>

> " I know of nobody who is purely Autistic or purely neurotypical. Even

> God had some Autistic moments, which is why the planets all spin. " ~

> Jerry Newport

>

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