• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

D-Ribose Question - Freddd Protocol

sflorence

Senior Member
Messages
134
Hi all,

I have knocked EVERY single "co-factor" off Freddd's list of possible limiting factors besides D-Ribose.
Has anyone experience any breakthroughs with D-Ribose?


Heres a list off the top of my head of co-factors I have tried:
-SAMe
-TMG
-B1
-B2
-B3
-B5 *
-B6
-Biotin
-Zinc
-Copper
-Coq10 (ubiquinol)
-B-Complex (Swanson)
-Vitamin D*
-Vitamin A*
-Vitamin C
-Vitamin E*
-Calcium
-Magnisium
-Potassium
-Selenium
-Fish oil

Anything with a * next to it means I did not try it for an extended period of time, maybe a couple of days.

The most current co-factor am on now is Fish Oil, of which I started 5 days ago with no improvements; my lab results showed I was deathly low in omega3 and omega6.

Also, last time I tried selenium I got a terrible body odor, I prefer not to do that again.


Side note: I am up to 15mg/day folate, 25mg/day b12, 15mg/day ado, 4g LCF/day. These are not the only supplements I take.

I would say overall I have seen a 30% increase in my health throughout the Freddd protocol of which I have followed religiously for the past 4 months. I have now hit a dead zone, I have had no improvement for the last month and a half.




Thanks all.

(P.s.: If anyone has any spare D-Ribose please let me know!)
 
Last edited:

whodathunkit

Senior Member
Messages
1,160
@sflorence, congrats on your improvement even if it's not as great as you wish! :thumbsup:

One thing I can see is that you can probably adjust your LCF dosage down. Unless something's changed that I'm unaware of, Freddd indicated there probably wasn't any additional benefit to taking more than 1000mg/day. I was very happy to learn that as it helps with the $$$. :)

You don't say if you are stable or not on the regimen. Are you? If not, what sides are you still experiencing?

In order for me to stabilize and achieve healing on Freddd's protocol I had to go up to 40mg/day folate for a while. I was also doing 5mg/day injectable mB12 (which I obtained from my physician because I'm anemic). My doses were huge and I'm not necessarily recommending them to you, but it was my experience that this was how high I needed to go to get where I needed to be healthwise. Otherwise I would stall. IIRC this was Freddd's experience, as well.

D-ribose gave me some temporary relief from sides...it gave me a nice boost of energy when I needed it. But it wasn't effective for more than a couple weeks. For me. YMMV. TMG did me the same way...temporary boost then quit working. D-ribose is definitely worth using, though, because even if temporary a boost is a boost. And if not temporary but more long term, then that's even better. I wish I could tell you about dosage I used, but I just don't remember. It was a couple years ago. I think I dosed according to my symptoms, using the package instructions as a starting point.

When considering lack of progress it's also worth noting that we typically don't feel increasingly better every day. We love it when that happens because anything's better than the old status quo, but as a new level of health sets in, it becomes our "new normal". We incorporate it into our everyday perceptions the way the old level of ill health used to be part of our everyday perceptions. Once feeling better is no longer a novel sensation we sometimes think maybe we've regressed, but we really haven't. We're still getting better, it's just not giving us that "buzz" any more.

Good luck! :)
 

sflorence

Senior Member
Messages
134
@whodathunkit

I was at 40mg of folate at one point as well, but I just don't need that much anymore. I am very stable on all the quartet.

I will back of the LCF, thanks for the input.

Funny enough, I had the same experience with TMG. I think that is the general experience with TMG from what I have read. Everything so far (besides the quartet) has just given me nice boosts, then faded. Many of them were so promising because I felt AMAZING for a day or two, then back to my old self :(

You're last paragraph was a much needed dose of perspective, thank you :)

Thanks for the response,

-Stefan
 

junkcrap50

Senior Member
Messages
1,330
Have you tried using ALCAR (Acetyl L-Carnitine) instead of LCF?

I had some mild benefits on the Freddd protocol when I started the DQ (was at 4mg mb12, 20mg folate, 5mg ab12) using 1g LCF. I'd say I had about 25% improvement when I added the LCF. And was also frustrated by not having the big benefits some people had reported. Then I figured I'd try ALCAR. I thought it wouldn't work, since I had a response to the LCF, but WHOA did I feel great with ALCAR! Nearly 100% cured. Unfortunately, that lasted less than 1 day before crashing. I must have ran out of other cofactors. I'm still trying to get out of that crash. The mistake I had was I switched from 1,000mg LCF to 1,000mg ALCAR at once. DO NOT DO THAT. Start from scratch when switching to ALCAR, if you do. Start very low and slowly build up. I ran out of B1, B2, and B3 cofactors when I did that and am still rebuilding up my levels of those Bs after 3 months.

I don't think it's a strict either-or situation with LCF or ALCAR as Freddd and others has made it seem, perhaps to them. I think some people respond to both but more strongly to one. So, don't assume ALCAR won't help or work better because LCF seemed to work.

My second suggestion
is to try adding B1, B2, and B3 (perhaps the rest of the B's too) individually, one at a time, in addition to your B-complex. If you've tried that already, make sure the individual Bs are the active form or coenzymated forms (I use Source Natural's sublinguals). I had to do that with B1 (Thiamine) and now also B3 (as NADH). I've randomly taken B2 (FMN) too and on one or two occasions it's made me feel better. Again, this is taking a very good B-complex with all active or coenzymated B vitamins at 100mg doses each.

As a note: D-Ribose did not seem to help me as I was searching for cofactors.

Some more Info/Ideas:
++ One phoenix rising user needed 5g of LCF - a outlier in usual 1g LCF needed - which was the difference in curing her. See (search) @triffid113 's many posts saying @velha508 cured herself with 5g of LCF:
Velha cured herself of CFS (or CFS symptoms - she always said that she could have had something CFS-like that still was not CFS) by taking clse to 5g carnitine fumarate from Doctor's Best (she said most brands were not potent, but that brand and one other).
However, I'd assume, Velha was seeing increasing benefits as she increased her LCF amounts.

++ There is a very good/fairly well known chart or picture of the biochemistry pathways with all the cofactors used. I can't seem to find it, but it lists which pathways use B1 and B7 vs B2 vs others. If someone can find it, you may try referring to it to see which cofactors to try. (I think a Phoenix Rising user made it actually).

++ Try switching to a different B-complex. Seems there's a wide difference in brands for many of these things. Consider different brands for other cofactors and DQ.

++ Try switching to the B12 Oils for the DQ. @Johnmac seems to have essentially cured his CFS by switching to the oils. With the high doses of the DQ you're taking, it may be cheaper/more effective delivery of the B12s for you. I plan on ordering a trial of the B12 Oils to see if it makes a difference in me, even though I'm at low doses of the DQ (roughly 1mg for everything).

Hope this helps or gives ideas.
 

junkcrap50

Senior Member
Messages
1,330
Everything so far (besides the quartet) has just given me nice boosts, then faded. Many of them were so promising because I felt AMAZING for a day or two, then back to my old self

Reading this leads me to believe it's a B1, B2, or B3 cofactor issue that's being depleted. Each one of those are very important in several of the methylation and mitochondrial/ATP pathways. B1 is used in the pyruvate to Acetyl CoA step. Acetyl CoA is the main ingredient used in the The Citric Acid cycle to make ATP. It seemed to help me when I was having burning muscles from easy tasks, like a very fast lactic acid buildup feeling. You can see many people's positive responses in the "B2 I Love You" thread. It's used in methylation as a MTHFR cofactor and used in many mitochondrial pathway steps. And B3 or NAD+ is used in just about every mitochondrial pathway step. THese are things that I've been focusing on and have found benefits from. And from my research, they are probably the top 3 most used or biggest cofactors used in the Freddd Protocol. I think most people find sufficient supplementation with B-complexes or have normal enough stores in their body. A problem with them is that they are water soluable (except B1 if you take it as Benfotiamine, which is the better form) and aren't really stored in the body very well. So they need continual supplementation if you are low (I do 3-4 times a day along with my mb12).
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Reading this leads me to believe it's a B1, B2, or B3 cofactor issue that's being depleted. Each one of those are very important in several of the methylation and mitochondrial/ATP pathways. B1 is used in the pyruvate to Acetyl CoA step. Acetyl CoA is the main ingredient used in the The Citric Acid cycle to make ATP. It seemed to help me when I was having burning muscles from easy tasks, like a very fast lactic acid buildup feeling. You can see many people's positive responses in the "B2 I Love You" thread. It's used in methylation as a MTHFR cofactor and used in many mitochondrial pathway steps. And B3 or NAD+ is used in just about every mitochondrial pathway step.

I agree. Fred downplays them too much IMHO. I know a guy who takes 500 mgs niacin every day, and hardly any folates or B12, something that Fred would strongly disagree with, and has been in remission for 3 years.

Without niacin, it's very difficult to make ATP.
 

sflorence

Senior Member
Messages
134
Have you tried using ALCAR (Acetyl L-Carnitine) instead of LCF?

I had some mild benefits on the Freddd protocol when I started the DQ (was at 4mg mb12, 20mg folate, 5mg ab12) using 1g LCF. I'd say I had about 25% improvement when I added the LCF. And was also frustrated by not having the big benefits some people had reported. Then I figured I'd try ALCAR. I thought it wouldn't work, since I had a response to the LCF, but WHOA did I feel great with ALCAR! Nearly 100% cured. Unfortunately, that lasted less than 1 day before crashing. I must have ran out of other cofactors. I'm still trying to get out of that crash. The mistake I had was I switched from 1,000mg LCF to 1,000mg ALCAR at once. DO NOT DO THAT. Start from scratch when switching to ALCAR, if you do. Start very low and slowly build up. I ran out of B1, B2, and B3 cofactors when I did that and am still rebuilding up my levels of those Bs after 3 months.

I don't think it's a strict either-or situation with LCF or ALCAR as Freddd and others has made it seem, perhaps to them. I think some people respond to both but more strongly to one. So, don't assume ALCAR won't help or work better because LCF seemed to work.

My second suggestion
is to try adding B1, B2, and B3 (perhaps the rest of the B's too) individually, one at a time, in addition to your B-complex. If you've tried that already, make sure the individual Bs are the active form or coenzymated forms (I use Source Natural's sublinguals). I had to do that with B1 (Thiamine) and now also B3 (as NADH). I've randomly taken B2 (FMN) too and on one or two occasions it's made me feel better. Again, this is taking a very good B-complex with all active or coenzymated B vitamins at 100mg doses each.

As a note: D-Ribose did not seem to help me as I was searching for cofactors.

Some more Info/Ideas:
++ One phoenix rising user needed 5g of LCF - a outlier in usual 1g LCF needed - which was the difference in curing her. See (search) @triffid113 's many posts saying @velha508 cured herself with 5g of LCF:

However, I'd assume, Velha was seeing increasing benefits as she increased her LCF amounts.

++ There is a very good/fairly well known chart or picture of the biochemistry pathways with all the cofactors used. I can't seem to find it, but it lists which pathways use B1 and B7 vs B2 vs others. If someone can find it, you may try referring to it to see which cofactors to try. (I think a Phoenix Rising user made it actually).

++ Try switching to a different B-complex. Seems there's a wide difference in brands for many of these things. Consider different brands for other cofactors and DQ.

++ Try switching to the B12 Oils for the DQ. @Johnmac seems to have essentially cured his CFS by switching to the oils. With the high doses of the DQ you're taking, it may be cheaper/more effective delivery of the B12s for you. I plan on ordering a trial of the B12 Oils to see if it makes a difference in me, even though I'm at low doses of the DQ (roughly 1mg for everything).

Hope this helps or gives ideas.


1. Yes I have tried ALCAR. Although I haven't really gone above 1g. Maybe I will try a higher dose, thank you!

2 Yes, I have tried all of those individually. The only one I continue to take is b2, although I do remember b3 helping quite well for some of my depression symptoms. I took a very long time to figure out how each B effected my energy, but I think in the end B2 is the most important for me.

3. I currently use the b12oils. I have had no break-through with them, but they happily replaced 20mg mecbl and 15mg adocbl. So I just report back that I am still at that dosage. My teeth are thanking me.

4 Good point! I have a life extension activated B-complex laying around that I was going to try :)

I really appreciate the high effort response, goes to show what a great place this is :)
 

sflorence

Senior Member
Messages
134
@dannybex

Did he take the normal niacin? Or the niacinamide? I have only experienced with the latter, but I always used to get a feeling of well being after, of course, the big red flush :)
 

junkcrap50

Senior Member
Messages
1,330
In theory, any form of niacin should be easily converted to NAD+ to be used as needed. However, the usual theories never seem to be the case with us. So, I would say Nicotinamide Ribose would be the best form of B3. Then NADH.

Nicotinamide Riboside is the best form to increase NAD+ levels in the body as a lot of research shows and was developed since niacin's other forms are inefficient in making NAD+. And the NAD+ form is the actual cofactor used in these pathways. However, it is a patented, specialized product so it probably cost more and isn't on hand. It is the only one of the B3 forms that, as I can tell, doesn't have some downside.

Each form seems to a downside:
++Niacin as pure niacin supposedly stops methylation, (EDIT: Technically not correct. Niacin consumes extra methyl groups) according to many people in these forums. And I believe it that it does help people who are over stimulated. Perhaps it only stop methylations (EDIT: consumes extra methyl groups) if it has driven into over-methylation. So I'm a little confused about it, since taking niacin plus mb12 and folate seem contradictory. Maybe it works if you take it apart from one another. If you have histamine issues, niacin will cause mast cells to release their histamine. So you may want to avoid this flush-form of niacin if you do.

++Niacinamide as the same problems with niacin with stopping methylation, but without the side effect of flushing.

++NADH probably would rank 2nd to Nicotinamide Riboside. That's what I take and it seems to help me. It's likely cheaper than the Riboside form too. I just had some NADH left over from before the Fredd Protocol so I started with that. It's advertised as the coenzymated and active form. However, it's the reduced form, so it would have to be oxidized (ie: NADH would have to be converted to NAD+, so NAD+ can be then used as a cofactor in a reaction and made back into NADH). I hesitate to explain my confusion on reduced vs oxidized form on fear it may confuse you or others, but there's debate on these forums and longecity.org forms about which form will produce NAD+ the best. Since NADH is likely used in a lot of other places to make NAD+, then taking NADH is probably okay to take to correct any deficiencies. It's working for me.

I hope this helps. I would start with whatever you have on hand first since you already have it.
 
Last edited:

sflorence

Senior Member
Messages
134
@junkycrap50

Thanks for the lowdown. Funny enough, this is the second time someone has recommended that form of b3 to me today. I will definitely put that on the list of things to try.

At the time of taking niacinamide, I did not know that it slows down methylation. Do we have any studies that show this is the case? Is it possible to even measure methyl groups?
Anyways, I am many, many weeks past the feelings of overmethylation. I felt overmethylated probably for the first month, since then it was smooth sailing.

Do you consider NADH or NR to be "essential" for you?
 

sflorence

Senior Member
Messages
134
I also want to point out that I cannot seem to find anyone who reports D-Ribose doing anything too great for them. I am interested that Freddd has included that in his highly important co-factors list.

Started on 500mg of Niacin today, it gives me a nice kick of energy, I will see how it plays out.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
@dannybex

Did he take the normal niacin? Or the niacinamide? I have only experienced with the latter, but I always used to get a feeling of well being after, of course, the big red flush :)

The regular niacin. And if you feel better afterwords, then that's something to pay attention to.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
p.s @junkcrap50, I don't think niacin literally stops methylation. It's a methyl-acceptor, which is needed, just like folate and B12 are needed methyl-donors. It's all about balance, and that balance will be different for different people. :)
 

junkcrap50

Senior Member
Messages
1,330
@junkycrap50
At the time of taking niacinamide, I did not know that it slows down methylation. Do we have any studies that show this is the case? Is it possible to even measure methyl groups?
Anyways, I am many, many weeks past the feelings of overmethylation. I felt overmethylated probably for the first month, since then it was smooth sailing.

Do you consider NADH or NR to be "essential" for you?
As of recently, yes. NADH is essential for me. After a couple months of trying to get the benefits from the FP to come back - without success - NADH has definitely helped. I've tried it in the past before the FP and it didn't do anything or made me feel worse. I haven't taken NR, but I have some. So I will play around with it. Glad to hear the niacin gave you some energy.

QUOTE="dannybex, post: 737941, member: 114"]p.s @junkcrap50, I don't think niacin literally stops methylation. It's a methyl-acceptor, which is needed, just like folate and B12 are needed methyl-donors. It's all about balance, and that balance will be different for different people. :)[/QUOTE]
Dannybex is correct. My mistake, I should have known better. People use the description of "stopping methylation" here in these forums, because it may appear that way when they take niacin after taking B12 and folate. However, I do not think NADH or Nicotinamide Riboside are methyl-acceptors, so they may be working on a different mechanism.