Carnitine/Freddd protocol

[Gretel]

Hi, I've been reading quite a lot on these forums the past several months but have never posted before. I have really appreciated all the group help and discussion that has been going on here.

@Freddd I have found significant benefit from your protocol after trying other approaches to supplement with methyl Bs. I can't tell you how much I appreciate your perseverance and effort to educate others on what you have learned. Thank you.

Right now I am perplexed at why I seem to have a questionably high tolerance/need for methylfolate and B12. Per 23 and me I am homozygous COM-T and hetero MTHFR C6772 but I have been taking 40 to 50 mg of methylfolate (Thorne) and even more B12 (One third methyl, two-third adeno Country life/source naturals). I also have homozygous MAO and SOD 2 mutations and long history of inflammation type headaches, complicated migraine, and neck stiffness. I have needed and supplemented 2000 mg of potassium to keep up with the demand from starting activated B vitamins.

When starting, I titrated up the B12s and then folate just fine with good results. Then I tried 1/2 capsule of Doctors Best l-carnitine. I had severe fatigue like others have mentioned but no anxiety (anxiety/mood is not usually an issue for me). I switched to and had amazing results with Jarrow liquid carnitine starting with 4-7 drops undiluted per day divided in two doses. This seemed to increase my folate need and greatly increase my potassium need, but I had fantastic energy and great mood for a few days and still no anxiety whatsoever. Prior to this I had worked my potassium up from 3.4 to 4.3 over the previous few months (K had dropped to 3.4 due to very high dose b1 a naturopath had put me on). Unfortunately, with carnitine my potassium decreased from 4.3 to 3.7 despite being on 2000mg K per day. I took a break from the carnitine for a couple of days and had very low mood and increased fatigue which I understand is to be expected. I restarted with 1 drop per day with good results the first day, but ongoing do not seem to be fully coming out of the fatigue/low mood. I suspect fatigue is related to lower potassium so I have increased my K to about 2400 mg. I did feel like there was some healing going on with the carnitine and the energy was really great. I was wondering if like other components of the DQ, once you start at a low level, you must increase progressively to meet the demand your body begins having from having started that supplement/healing. Meaning, should I titrate up on carnitine slowly?

I'm feeling a bit fearful one because of the demand on potassium and two because I also saw that my ALT liver enzymes went from 16 to 37 (with 32 being top of nml for females) it's never been out of range before--always 12–16).

@Johnmac I saw that you mentioned in a post that you had crashed recently. Was carnitine the reason do you think? I saw that you are no longer taking it and now doing B-2 per Greg. (incidentally, I have also ordered the B-12 oil. Thank you @garyfritz for your discussion about this. I found it helpful given my voracious need for B 12 especially adeno.)

I have read that carnitine is a major component of healing, and with the positive results I had initially, would love to have guidance as to whether to continue it or not. I also purchased Coenzymated B – 2 (FMN) with the theory that high folate needs may be due to b-2 deficiency. I have been taking 13mg per day (Source Naturals) the last two days with no immediate effects negative or positive. (EDIT: actually, possible decrease in folate need noted with FMN) I started with plain riboflavin prior, but got an inflammatory type headache that only went away with even more folate. No headache with FMN.

Thanks very much for any guidance or info anyone can provide. ***My main symptoms now overall are severely tight and painful musculoskeletal system with some nerve symptoms, difficulty building strength, inconsistent fatigue, and fluctuating very dry eyes, though I had other symptoms before starting Freddd's protocol).

 

[Deltrus]

I was wondering about this myself, what is the role of carnitine in healing?

Does it increase fatty acid transport to cells, so that mitochondria and inner cell structures can heal? That is all I can think of. I guess it is an anti-oxidant too?

 

[Justin30]

@Deltrus Acetyl L Carnitine passes the blood brain bareier. Its role is to prevent nerve cell damage from depleted oxygen levels in the brain. Further it stops this damage from occuring therefore protecting brain nerve cells.

It is also a key messenger as messenger molecule for acetycholine in the brain witch provides the brain energy/ATP that is otherwise needed to repair or heal/brain damage.

Its is not a miracle cure but plays a very important role. Dr D Petterson test these levels in the brain as it is one area I assume gets hit when you get ME.

The Acetyl form is the only form that is able to penetrate the blood brain barrrieir effectively....at least from what I have read.

 

[Gretel]

Hi @Freddd

Just wondering if you had any thoughts on my questions above. I'm new here and started this thread in the wrong place (it was moved) and not sure if you saw it. Thanks for any help you can provide!

 

[junkcrap50]

Gretel, I'm experiencing something similar to you in regards to methylfolate demand.

In my case, I titrated up over the last 2 months to rather high levels: 4000mcg mb12, 2500mcg ab12, 40-80mg mfolate (Extrafolate-s form), and 500mg LCF per day but with inconsistent and mild benefits. I misidentified/misunderstood startup effects and folate defienciency symptoms and added new DQ items too late leading to such high doses. I just recently switched to trying acetyl-L-carnitine and had a "WOAH" effect of feeling great. It lasted one day, and then I had intense headaches, tight muscles throughout but especially in neck, muscle aches, malaise, fatigue, etc. So, now I am in a position of having added carnitine while my other DQ supplements are at very high levels, which quickly leads to a deficiency of some sort. 80mg of folate,10-20mg of that sublingually, doesn't seem to help. I'm too hesitant to trying higher doses of carnitine to see if that would help.

My thoughts are that I should back down all my DQ levels to where everything is stable and sustainable at a low acetyl-l-carnitine dose and wait there while any healing is complete. So rather than increasing each DQ item to reach a benefit and then adding a new one, if all 4 are together at low levels and working synergistically, each respective DQ amounts can be lower. Maybe then methylfolate (and in your case, potassium too) demand won't be so great. Does that make sense? I don't know if that will help me or you but it is an idea for you to think about.

Instead of raising your potassium, methylfolate, and carnitine needs to match your methylation demands, lower your ab12 and mb12 to levels that will allow 1 drop of carnitine to cause you to feel good. The methylation cycle might be spinning too fast to be sustainable. Does anyone else have any ideas on my theory?

Other items:
-I am also trying B2 (FMN), 18mg/day, to see if that will decrease my folate needs. I haven't noticed any differences in regards to that.
-Carnitine's role is that it is important co-factor in the Krebs cycle, which makes ATP. Without adequate ATP, each of the 4 DQ are codependent on it and vice versa and you won't get any methylation. There is a post somewhere that explains how they are all dependent on each other, but I couldn't find it.

 

[Deltrus]

I'm learning that carnitine shuttles fatty acids into the mitochondria for the Kreb cycle, but mitochondria also use these fatty acids to make up all sorts of things such as lipid membranes. Thus, it is essential for healing.

 

[Gretel]

Gretel, I'm experiencing something similar to you in regards to methylfolate demand.

In my case, I titrated up over the last 2 months to rather high levels: 4000mcg mb12, 2500mcg ab12, 40-80mg mfolate (Extrafolate-s form), and 500mg LCF per day but with inconsistent and mild benefits. I misidentified/misunderstood startup effects and folate defienciency symptoms and added new DQ items too late leading to such high doses. I just recently switched to trying acetyl-L-carnitine and had a "WOAH" effect of feeling great. It lasted one day, and then I had intense headaches, tight muscles throughout but especially in neck, muscle aches, malaise, fatigue, etc. So, now I am in a position of having added carnitine while my other DQ supplements are at very high levels, which quickly leads to a deficiency of some sort. 80mg of folate,10-20mg of that sublingually, doesn't seem to help. I'm too hesitant to trying higher doses of carnitine to see if that would help.

My thoughts are that I should back down all my DQ levels to where everything is stable and sustainable at a low acetyl-l-carnitine dose and wait there while any healing is complete. So rather than increasing each DQ item to reach a benefit and then adding a new one, if all 4 are together at low levels and working synergistically, each respective DQ amounts can be lower. Maybe then methylfolate (and in your case, potassium too) demand won't be so great. Does that make sense? I don't know if that will help me or you but it is an idea for you to think about.

Instead of raising your potassium, methylfolate, and carnitine needs to match your methylation demands, lower your ab12 and mb12 to levels that will allow 1 drop of carnitine to cause you to feel good. The methylation cycle might be spinning too fast to be sustainable. Does anyone else have any ideas on my theory?

Other items:
-I am also trying B2 (FMN), 18mg/day, to see if that will decrease my folate needs. I haven't noticed any differences in regards to that.
-Carnitine's role is that it is important co-factor in the Krebs cycle, which makes ATP. Without adequate ATP, each of the 4 DQ are codependent on it and vice versa and you won't get any methylation. There is a post somewhere that explains how they are all dependent on each other, but I couldn't find it.

Hi junkcrap,

Thanks very much for your reply. It's nice of you to share your thoughts. Yes, your dilemma sounds similar! I was thinking of just backing off of Carnitine and allowing things to settle. However, I like your idea of reducing all of the DQ to a manageable, more synergistically equal level. What you say makes a lot of sense. The Carnitine does seem promising perhaps for both of us given our initial positive responses. I would love to have some of that back even at a less amazing (probably more normal) level.

Unfortunately, prior to my Carnitine trial, I did seem to require quite a lot of B12 (More adeno) or else increased neck and back tightness and pain would occur. The folate has also seemed necessary to a degree for the musculoskeletal issues and minor inflammation. Interesting, though, everything seems different now after trialing the Carnitine. The B12 does not seem to provide the immediate positive musculoskeletal response anymore. The folate insufficiency symptoms seem much more histamine/inflammation based with more headache now like symptoms I used to have my whole adult which reduced significantly after going off of gluten a few years ago (long before starting any of the DQ). I am still hoping the B-2 will help with some of this and reduce the folate dose, like you. So far for me, no major difference there, but perhaps it's not been quite long enough to know yet.

I recently started using sublingual folate (Methyl-life) to see if it was more effective. Do you find it to be for you?

I am hoping the B12 oil will help with a more stable input/result as others have reported.

The B1 that I had trialed last year for a while (also before attempting the DQ) did seem to help and I had a couple of really fantastic days, but I have been fearful of potassium and folate needs rising as a result.

Anyway, attempting to reduce my dosages and/or find what it is I'm missing to make them more effective at a lower level seems like a good course of action. I am currently taking what I mentioned above of the DQ, potassium, magnesium, calcium, vitamin D, fish oil, and a probiotic. I have been wondering about other minerals, but again too fearful to add anything...

Yes, if anyone else has something to add, I'm quite receptive!

Thank you again, Junkcrap.

 

[Johnmac]

I'm not in a great position to comment conclusively tight now, as I'm in an experimental stage. More coming in a couple of weeks, when things become clearer.

The Fred Protocol was great for me, & Fred's advice of titrating liquid carnitine helped me get over my horrendous carnitine crashes.

I'm now trying the B12 oils, and have stopped carnitine, lowered m-folate, & have added B2 50 mg/day (& am keeping up the selenium, C, & iodised salt in my cooking). I had a surge in the first week, a crash in the second, and now (the beginning of the third) am bouncing back nicely in terms of energy & to a lesser extent cognition.

But I won't really know what's going on for a couple more weeks, I'd guess.

@Johnmac I saw that you mentioned in a post that you had crashed recently. Was carnitine the reason do you think? I saw that you are no longer taking it and now doing B-2 per Greg. (incidentally, I have also ordered the B-12 oil. Thank you @garyfritz for your discussion about this. I found it helpful given my voracious need for B 12 especially adeno.)

I have read that carnitine is a major component of healing, and with the positive results I had initially, would love to have guidance as to whether to continue it or not. I also purchased Coenzymated B – 2 (FMN) with the theory that high folate needs may be due to b-2 deficiency. I have been taking 13mg per day (Source Naturals) the last two days with no immediate effects negative or positive. (EDIT: actually, possible decrease in folate need noted with FMN) I started with plain riboflavin prior, but got an inflammatory type headache that only went away with even more folate. No headache with FMN.

Thanks very much for any guidance or info anyone can provide. ***My main symptoms now overall are severely tight and painful musculoskeletal system with some nerve symptoms, difficulty building strength, inconsistent fatigue, and fluctuating very dry eyes, though I had other symptoms before starting Freddd's protocol).

 

[junkcrap50]

Oh good! I'm glad that my idea was helpful and made sense to someone else besides me. Hmm, I'm not sure why your symptoms have shifted and previous remedies aren't working. I must be frustrating and worrisome that these are all new symptoms that can't be helped. I know I get that feeling when long ago symptoms crop up spontaneously and don't respond like they used to (I'm speaking to when this happened to me previous to any Fredd protocol experimentation). But, I'm taking the attitude that any new symptoms due to doing the Fredd protocol (FP) are all related to it in some way since they seem so random and unique to each person. And some adjustment to the DQ will (I hope) have the new symptoms go away. That seems to be case for many people on this forum. When you look at the deficiency symptom list here, there are so many that Fredd can trace to his protocol.

As regards to your symptoms you relate to your gluten-eating times, Fredd says epithelial issues arise in the first stages of "Refeeding Syndrome" (see point #1 here). Your epithelial issues seem to display in your gut and present with headaches and histamine rather than the typical IBS-like symptoms. I have had some mild symptoms (bloating, foul smelling gas, irritable stools) after starting carnitine that reminded me when I had leaky gut and ate gluten. And I haven't had any other epithelial issues except a runny nose at the start of the FP that went away. No mouth or skin epithilial issues; nose epithelial issues at the very beginning; gut epithelial issues now with carnitine. See, it's pretty random.

I haven't tried the Methyl-Life product. I didn't know a sublingual product existed. That's interesting. I just opened and dumped a capsule of the Extrafolate-S form of methylfolate from MethylPro into my mouth. I don't think the Extrafolate-S form works that great for me, so I've been researching the other trademarked forms of methylfolate recently and will likely try Methyl-Life's Magnafolate-C next if I continue to need high doses of folate.

I don't know how much of an effect adding other minerals will have. Are you very sensitive to different supplements in general or have a history of being very sensitive? They wouldn't hurt me at all, but some people are very sensitive. You seem to be taking most of the "Critical Cofactors," except Vit. A, E, C, and zinc. Copper is mentioned fairly frequently and have helped a few people, but my multivitamin has it. I think these are just taken to cover all bases if any deficiency should show up since it would be hard to trial and error every time. Maybe you could add some minerals you wanted 1x per week or every 1-2 days.

 

[junkcrap50]

I'm hopeful that this approach of taking a lower, more synergistically equal amount of DQ will work. I came up with the idea after reading this Fredd post in this somewhat obscure thread. I had an "Ah ha!" kind of moment where I finally just "got it" and how & when to titrate each DQ. I will quote the most relevant part below, but the entire thread is worth reading. All of Fredd's posts in that thread explain and nutshell all aspects of his protocol very well. Reading dozens of threads and hundreds posts about his protocol didn't explain as much or as clearly as that thread did for me. He explicitly explains at what to add at specific doses.

....
Following the newer version of the titration pattern then the steps look like this.

1 - Titrate AdoCbl/MeCbl combo to approximately 100mcg absorbed where healing can "turn on" with 200-800mcg of l-methylfolate. 200mcg will not be enough and will immediately (3 days) give "detox" symptoms composed of low potassium and donut hole folate insufficiency. If startup does not occur by the time one gets to 1000mcg combined absorbed cobalamins, titrate LCF

2- Identify low potassium symptoms and titrate potassium.

3 - Identify donut hole folate insufficiency and titrate with 4x-8x dose size of l-methylfolate several times a day until those symptoms are strongly diminishing.

4 - titrate AdoCbl and MeCbl to perhaps a nominal sublingual dose of 1000mcg each, watching for low potassium, donut hole folate insufficiency and identify any other new symptoms, and what isn't being taken care of

5 - Finish titrating LCF to 500-1000mg for now, then identify what isn't healing or not enough. Try SAM-e, TMG, D- ribose, Vit D, Zinc, B-vits and various things as needed to improve performance. It isn't a try 1 thing and then another. It is add SAM-e and then TMG and various other things. It is usually combinations that yield results. SAM-e need titration over several months. LCF could take six months to titrate up to the 500mg dose and try 1000mg to see if it makes a difference. Don't rush things. Think things through. Look at the symptoms and effective supplements for them to get ideas. Most people will fall into one of several groups. Almost everybody here has appears to have complicating factors and more severe things going on, with me it is SACD which is basically long term damage from prolonged deficiency. Hormones get all messed up and will often change during these titrations.. There isn't a system of the body that is immune to damage from these deficiencies. As there are at least 600 reactions affected by the methylation and ATP the variations are huge in number.

6 - Titrate MeCbl separately until it makes no difference.

7 - Adjust potassium and l-methylfolate as needed by response to symptoms

8 - Titrate AdoCbl separately until maximum amount that makes a difference.

9 - Adjust LCF

10 - Adjust various factors.


This description is an approximate description of the process. There is no fixed specific ratio I can even begin to suggest between MeCbl, AdoCbl and l-methylfolate. It is all by titration AND VERY CUSTOM FOR EACH PERSON.
....

In the quote above, Fredd recommended adding carnitine pretty early on. Now, however, I'm a little unsure of how to undo or go backwards on the protocol. Last week, when I tried retaking carnitine a second time to confirm (and did) that it was causing my new symptoms, I took it alone without having taken any other DQ supplements that day or the day before. And even still, I got worsening deficiency symptoms.

My plan now is I think I am just going to stop all DQ supplementation for about a week, except methylfolate and potassium, since I think I'm currently deficient in both. That way I can build up my folate and potassium stores while trying to calm down my symptoms. Hopefully taking just those won't cause much methylation to startup. Then, I will try going back to taking doses similar to Fredd's point 4 in the quote: per day of 1,000mcg mb12, 1,000mcg ab12, and appropriately matching methylfolate dose (hoping for just 4,000mcg). I was pretty stable at these doses previously. Maybe I will have to re-titrate up to that. Finally, at these new doses I will reintroduce carnitine as low as possible (75mg I think) and build up it from there.

Because just a few drops of carnitine caused your symptoms and I don't know how long you required titrating your DQ doses, you may have to restart the FP at much lower mb12, ab12, and methylfolate levels when you reintroduce carnitine - like in Fredd's point 1. I recommend you use your best judgement for yourself.

I'm hopeful all this will do the trick. I know I got into this problem myself because I didn't have a clear understanding of the FP and didn't know when to titrate folate, ab12, or carnitine. Reading all these threads can confuse oneself since there's not just one complete Bible-like source on the FP. I'll post back here and update how I'm doing with my plan. Best of luck to you on this new approach, Gretel.

 

[Gretel]

Yes, it was a bit frustrating. I am feeling much better now though I have mild break-through headache between folate doses. Wow, that's pretty interesting that you had return of old symptoms with carnitine that did not appear at the start of the protocol too! Nice to know there are others out there who can commiserate.

That makes sense about the epithelial component and timing of my symptoms. You're completely right about it manifesting in headaches vs gastric issues for me. After having a serious car accident a few years ago, it also manifested in the strained muscles (and has ever since unfortunately-darn histamine receptors everywhere). After stopping the Carnitine trial a couple days ago, I also started breaking out on my forehead which was interesting. Been a long time since I've had that! I'm glad Freddd has done so much of the groundwork and laid out these patterns. No one would push through this stuff without knowing.

I'm sorry, I was incorrect when I said the Methyl Life folate was sublingual. It's chewable but not sublingual. Methyl Life B12/folate combination supplement is sublingual but probably just for the B12 portion. Sorry about that! The Methyl Life folate is significantly less expensive than the Thorne I have been taking. It doesn't seem to work quite as well as the Thorne, but nearly as well for me. The cost differential makes it worth it.

I have also seen the talk about the minerals, particularly copper and zinc. I forgot to mention that I take a multi as well that includes the minerals and the other vitamins though I'd only been taking a half dose off and on. Supplements in general never used to bother me, but since doing the trial with high dose thiamine and having a bad reaction to glutathione, I've felt more sensitive (and leary). Perhaps because a pathway opened up. However, after processing my reply to you regarding minerals a couple days ago, I did start increasing it and so far so good (So thanks for that!). I think manganese and a couple of others may be vital for my MAO mutation which I am almost certain is expressing due to my tendency towards high histamine and only being heterozygous MTHFR. I'm not sure about the SOD2 but the minerals could help there, too if expressing.

I've increased B2 as an experiment and decreasing B12 if/as able. Hoping to be able to circle back around to the carnitine after some of these changes. According to folks who have talked to Dr. Greg who makes the B12 oils, carnitine is also facilitated by B2 supplementation. I am considering restarting Carnitine with micro-titration instead of the undiluted drops. Are you planning to do micro-titration or just start with a fraction of the capsule? I had tried 1/8 of a Doctor's Best capsule twice prior to going to the liquid and still got that fatigue. I had avoided the micro-tiration since it seemed like a pain and also I had no anxiety which seemed the main reason to titrate this way. Anyway, your thoughts about taking a week break except folate and K and starting up again with the others slowly according to Fred's outline seems like a good plan. I may be doing the same as you if my body can tolerate the break. Thanks for the link regarding Freddd's titrating guideline. It's very helpful content and good to have here. I think the insufficiency remedy is how I got so high on folate--in an attempt to stay head of the insufficiency. I had read in one post/version more emphasis on titrating up the folate with K until no longer having the deficiency symptoms before adding carnitine and that also led me to the high doses. I added Carnitine since I thought that might help things and then ended in boat we're both in.

I thought Freddd had also said somewhere that the amount of B12 should not affect the amount of folate a person takes (as opposed to vice versa). Meaning that you have to have a certain amount of B12 to cover what folate needs to work, but b12 dosage can be high and not force an increase in folate need as long as there is some Folate. If I'm wrong about that, then I have a better chance of decreasing all of it and proceeding with much lower levels since my high B intake could have been part of the problem as I think you alluded to. I've definitely felt I needed high doses, but have been extra liberal with it.

Well, I hope your malaise and headache from Carnitine has gone away and you're also doing better! Yes, please do post how you are doing with the new plan. Thanks again for your support and the links, Junkcrap50 (I feel bad calling you that ) It's very kind of you.

I'm hopeful that this approach of taking a lower, more synergistically equal amount of DQ will work. I came up with the idea after reading this Fredd post in this somewhat obscure thread. I had an "Ah ha!" kind of moment where I finally just "got it" and how & when to titrate each DQ. I will quote the most relevant part below, but the entire thread is worth reading. All of Fredd's posts in that thread explain and nutshell all aspects of his protocol very well. Reading dozens of threads and hundreds posts about his protocol didn't explain as much or as clearly as that thread did for me. He explicitly explains at what to add at specific doses.

 

[Gretel]

I'm not in a great position to comment conclusively tight now, as I'm in an experimental stage. More coming in a couple of weeks, when things become clearer.

The Fred Protocol was great for me, & Fred's advice of titrating liquid carnitine helped me get over my horrendous carnitine crashes.

I'm now trying the B12 oils, and have stopped carnitine, lowered m-folate, & have added B2 50 mg/day (& am keeping up the selenium, C, & iodised salt in my cooking). I had a surge in the first week, a crash in the second, and now (the beginning of the third) am bouncing back nicely in terms of energy & to a lesser extent cognition.

But I won't really know what's going on for a couple more weeks, I'd guess.

Ok, thanks @Johnmac Sounds promising. Would love to hear when you feel things have stabilized a bit.

 

[garyfritz]

I've never understood what the carnetine was supposed to do for you. It doesn't seem to do anything to me. I tried LCF and ALCar and never noticed any difference. Haven't been taking any for almost a year.

 

[whodathunkit]

I've never understood what the carnetine was supposed to do for you. It doesn't seem to do anything to me. I tried LCF and ALCar and never noticed any difference.

LCF is supposed to help you build new mitochondria and restore the mitochondria you already have (see @Deltrus post above). So maybe if you don't have mitochondrial problems it won't help you. Not sure, just thinking out loud about why someone might not get a reaction from it.

But I can say beyond a doubt that it really helped me with exertion tolerance and exercise tolerance, after I was able to get stabilized with it. The sides (overstimulation, anxiety, insomnia, etc.) were kind of hard to get through but after stopping and starting a few times over the course of about half a year or more I was able to tolerate it.

ALCAR never did anything for me until I'd been on Freddd's protocol for a while. Now it seems to kind of overstimulate me, but I have some choline/liver problems and it's supposed to work more on the neurological/nervous system. That's all related. IIRC ALCAR can pass the blood-brain barrier, whereas LCF does not do that.

@Gretel: I'm a Freddd's protocol success story, and consider LCF a foundation of my recovery. I plan never to be without it. I take 1000mg/day, every day. I tend not to stop things that I know work for me, but rather add new things I think might help on top of them. FMN/B2 has been a help, as well.

I experienced a "classic" Freddd recovery following the protocol pretty much as he laid out (upping folate doses when adverse symptoms appeared, adding in co-factors when symptoms dictated, etc.). I also had some old symptoms return before I got entirely stabilized on Freddd's protocol, including gastric/gut issues (still ongoing, although better with the addition of gut therapeutics), some immune issues (mostly eczema, resolved) and some unwanted behavioral/psych issues (thankfully also resolved).

I highly recommend LCF, within the caveat of understanding the sides might be more than some people can tolerate, even with very low and slow titration. It's quite a powerful substance. But if you've already had a positive response from it, even a little one, I'm confident in speculating that it might work well for you, especially if you can find the right approach for using it. For whatever that's worth. Good luck!

 

[garyfritz]

LCF is supposed to help you build new mitochondria and restore the mitochondria you already have (see @Deltrus post above). So maybe if you don't have mitochondrial problems it won't help you.
But I can say beyond a doubt that it really helped me with exertion tolerance and exercise tolerance, after I was able to get stabilized with it.

That makes sense. Thankfully I've never suffered the full set of horrors that some folks here have. I never had problems with exercise intolerance &etc. So maybe my mitos are OK and LCF/ALCar won't do anything for me. I never felt ANYthing from it, including the startup problems you had.

I wonder if it makes sense to take it just to support proper function? Given that I have SOMEthing that causes huge B12 requirements, and I have SNPs that suggest CFS/ME tendencies, maybe I should take the full DQ just to make sure everything keeps working well? I've been taking meB12 and adoB12 (in oil), and I was taking methyl folate. I experimented with higher/lower doses of folate, and for several weeks I haven't taken ANY. And for about the last 1-2 weeks I've only been taking meB12. So far no problems -- but maybe it's prudent to supply the full DQ just to make sure I don't run into problems....?

Thanks @whodathunkit!

 

[Gretel]

But I can say beyond a doubt that it really helped me with exertion tolerance and exercise tolerance, after I was able to get stabilized with it. The sides (overstimulation, anxiety, insomnia, etc.)

@Gretel: I'm a Freddd's protocol success story, and consider LCF a foundation of my recovery. I plan never to be without it. I take 1000mg/day, every day. I tend not to stop things that I know work for me, but rather add new things I think might help on top of them. FMN/B2 has been a help, as well.

I experienced a "classic" Freddd recovery following the protocol pretty much as he laid out (upping folate doses when adverse symptoms appeared, adding in co-factors when symptoms dictated, etc.). I also had some old symptoms return before I got entirely stabilized on Freddd's protocol, including gastric/gut issues (still ongoing, although better with the addition of gut therapeutics), some immune issues (mostly eczema, resolved) and some unwanted behavioral/psych issues (thankfully also resolved).

Good luck!

Thanks very much, @whodathunkit! I had actually read some of your posts and have felt inspired by the success you've experienced. That's very encouraging and affirming about Carnitine and B2. I appreciate that.

I know everyone will be different and with their own convoluted route, but curious, how long would you say it took for you to feel maximum benefits after starting the protocol/carnitine? It seems like for several posters, carnitine made a huge difference and sort of sealed the healing deal, so to speak. Also curious, did B2 decrease your folate demand like others have mentioned/speculated about? I think I remember you mentioning you'd wished you had taken it sooner.

Thanks again!

 

[junkcrap50]

Gretel, interesting to hear Greg says B2 supplementation helps with carntine. Maybe I"ll stick with it. Though, I seem to excrete it on just 1 dose (25mg) even if I split it up to 2x/day.

Quick update: I took some time off from everything except folate and potassium, and all my symptoms seemed to improve with everything but mild muscle aches going away. I then used liquid ALCar and just titrated up to 20 drops (100mg) over a week with everything going fine. And then I added my lower doses of the DQ (1mg mb12, 1mg ab12, and 4mg methylfolate, everything split to 4x/day) and had my symptoms return, mostly the muscle aches/soreness and tight muscles in neck and legs. Though, I didn't have any headaches, malaise, or other "carnitine" symptoms. I kept at it for a couple days, but then got frustrated and backed off. I'm still having muscle aches and tightness. I was really stumped for a several of days. I'm writing up a long detailed stand-alone post to ask Freddd and everyone what their ideas are. I think it could be a cofactor deficiency, carnitine deficiency, or a methyl trap, but most likely it's just good old folate deficiency.

I read a quote from Freddd somewhere where he says, "In some cases, even just100mcg of absorbed mb12 can require up to 30mg of methylfolate to prevent folate deficiency symptoms." Maybe I screw towards that extreme. But, I think that I just started too much healing too fast. Reviewing my symptom/dose diary, I noticed didn't stick with the high dose folate for more than 2-3 days. Plus, maybe the Extrafolate-S just doesn't work at all for me. So, I'm going to buy every trademark form of folate and try high doses of them. In the meantime, crush up large doses of Metafolin and try sublingually again for several days. Maybe try intranasally (might be dangerous) if sublingual doesn't work.

I still think that having more synergistically equal dosages of the DQ will be important (build up carnitine at lower doses of the other DQ). But I think folate deficiency explains everything, as simple as it is. Consider, we did not have anxiety or other emotional symptoms from carnitine, which I think indicates excess neurotransmitters. Plus, our "good" symptoms disappeared, which may point to incomplete or "deadlocked" methylation.

 

[junkcrap50]

I thought Freddd had also said somewhere that the amount of B12 should not affect the amount of folate a person takes (as opposed to vice versa). Meaning that you have to have a certain amount of B12 to cover what folate needs to work, but b12 dosage can be high and not force an increase in folate need as long as there is some Folate.

It looks as if you're right. I came across one place where Fredd says it here. Interesting if it's true. But then why do people need to increase their folate doses as they progress on the FP? That's a rhetorical question.

More active b12 allows for deeper tissue penetration and somewhat faster healing but folate requirements don't appear affected by b12 quantities once that necessary minimum level is reached with it distributed by diffusion directly in the active form (mucosal absorption or injection) and not involved with TC2

Going from 3mg absorbed a day to 30mg absorbed required no change in l-methylfolate in any of us. Going from 400mcg to 30,000mcg of l-methylfolate did not require any more MeCbl or AdoCbl. SO I am quite unsure of what you are referring to as to requirements. The linkage between quantities of b12 and folate are very loose.

 

[Gretel]

It looks as if you're right. I came across one place where Fredd says it here. Interesting if it's true. But then why do people need to increase their folate doses as they progress on the FP? That's a rhetorical question.

Hi Junkcrap50,

Sorry for the delay. Thanks for very much for the update. I have wondered how things were going for you. I was thinking about your situation and I am wondering whether you may not be taking enough B12 to cover your folate. From what I had read, in various other's posts, B12 dose needs to be more than the folate dose or else methyl trap occurs. You may have seen that Freddd mentioned that it's actually the amount in the cells that is of concern in order to avoid severe folate deficiency (requiring large B12 doses for some?) I was reminded of this last week when trying to problem solve my fluctuating musculoskeletal issues. I realized, that I had let up on the amount of B12 I was taking despite having increased my folate previously (this was due to bringing the transdermal b12 oils on board and not knowing how to guage) I was still having all sorts of neck soreness, tightness, and pain as well as lower back pain. As soon as I realized this, I increased my B12 and consistently took more B12 than my folate dose (thought I had been doing that, but was not!). I also suspected that my potassium dropped greatly during the Carnitine trial and I never had recovered my levels which was likely contributing to the muscle spasm's. I increased my dosage of potassium temporarily and with those two changes, neck and back pain subsided completely. It was pretty night and day! I wonder if that would work for you too.

The musculoskeletal soreness and pain has been such a huge issue for me the past few years. It feels good (for right now at least while it lasts) to have some idea and control over it finally! I seem to have progressed over a hump--my muscles feel significanlty stronger and less likely to pull my spine out of alignment and endurace is better. I suspect some of this is related to having carnitine in my system for a while as I noticed this improvement starting around that time.

I'm sorry it hasn't worked out to get the carnitine back in for you. I have not tried again yet. Unfortunately, when I went on vacation last week, I inadvertently ran out of supplements and am still recovering. I can't seem to kick this labored breathing feeling. I thought it was potassium or folate, but dosing high on both has not helped. I still need to figure out how to get my folate doses down a bit more regardless, though. I will say that I think the transdermal B12 oils was helpful for me and maybe running out a few days ago and restarting sublinguals only is partly what's causing the trouble I'm in right now. Like I alluded to before, perhaps a non-steady or high enough dose of B12 in my (or your?) system is causing the high folate need. I really feel like I was taking a lot sublingually, but now as I am awaiting delivery of the B 12 oils, I and wondering if I am not able to get enough/smooth enough input that the B12 the oil was providing. I was taking the 3:1 Adeno/methyl combo so I've always seemed to need more adeno.

Regarding the B2, is it that output is yellow? I think I read that this is not a bad thing or indicative that it's not being used as opposed to other supplements causing color excretion. I have been on about 40–50 mg per day. I had also restarted 25 mg of B1 since I initially had a very positive response to that and I read that b1 is necessary if supplementing with potassium. This seemed to be going fine have taken it out while I try to get this labored breathing under control. Like you, though, I'm just not sure the B2 is really helping me. I'm interested to hear what Freddd has to say. Maybe in the meantime you could try higher doses of B 12? I can't remember if you have had any sort of bad reaction to increased doses. I know you went off completely of B12 for a while, but maybe that's why the neck soreness when just taking folate and potassium didn't go away completely? Just guessing here. I completely commiserate with you on lack of knowing where to go from here. This process is so bloody long and complicated. It's quite frustrating.

Will watch for your posts!

Gretel

 

[Gretel]

It looks as if you're right. I came across one place where Fredd says it here. Interesting if it's true. But then why do people need to increase their folate doses as they progress on the FP? That's a rhetorical question.

Another thing I wanted to mention as it pertains to your symptoms is, before realizing my B12 and potassium levels needed to increase, I was having really significant gastric issues. Lots of trapped air and bloating. The gastric stuff is typically not an issue for me as you know, but during this time it definitely was! This also got better with the increase in B12 and potassium. Likely the potassium helped since deficiency can cause ileum issues per Freddd. It may just manifest differently with your slightly different gastric symptoms. Or possibly it is the lack of proper folate usage due to low B12 (manifesting in epithelial layer)...?