Carnitine/Freddd protocol

[hvac14400]

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.

its effect is dose dependent - one at low dose and completely different at high (around 300mg/kg of bw) doses.
how much you've used?

 

[junkcrap50]

Gretel, sorry to hear about your labored breathing. I don't have any idea about that. And neither K or folate helped? Huh. I'm imagining that I think I read somewhere about how people with CFS have RBCs that can't carry enough oxygen and thus are enlarged (high MCV=mean cell volume), due to inadequate folate or B12 - maybe due to folic acid blocking folate.(Don't take my word on this being true. It could very well be false. I've been reading a lot of stuff lately, and it's hard to remember everything.). So maybe that might explain your labored breathing; you're not carry/getting enough oxygen. Just an random idea for you to search around for: "enlarged RBCs," "MCV" "folate" "b12".

However, I'm glad to hear that your experimentation with increasing B12 and K helped! And good to know your report about having carnitine in your system seems to have helped your muscles too. I think I'll take away increasing K and keep with the carnitine (I had stopped even with the drops). I've never taken K daily. I take a bunch of coconut water as needed when I notice I'm having low K and when I try to exclude it being a cause. Maybe consistent or higher dosages of K will help.

Funny thing, I did think about methyl trap and tried taking 5x1mg b12 at once, twice. More than I've ever taken and it didn't help one bit. So I think I ruled out methyl trap from having folate>B12. What worked was I took an insane amout of folate.

I got rid of my muscle achiness/pain/soreness and muscle tightness 3 days ago by taking a total of 53.4mg of methylfolate: 400mcg intranasally, 3mg sublingually, 10mg intranasally, and then 4x10mg sublingually - all in one sitting (over 2 hours). I took with it 500mcg mb12 to help it get into cells. I would just dump 10mg Extrafolate-S capsules in my lower gum. So far, taking 50mg sublingually has been keeping my muscle tightness and soreness at bay. But I can feel it coming back. This hasn't made me feel awesome, just back to my normal pre-FP-side-effects self, but I think I answered that it was folate deficiency. Must have been severe folate deficiency.

I have no idea why I needed so much. I'm going to update my thread and hope Fredd or someone experienced answers. Maybe I'm getting folic acid somewhere or that eating vegetables for me blocks methylfolate and helped me get into this deficiency. I hope I don't need this much all the time. I read in a couple places that 28mg roughly is the maximum effective dosages for people (who knows if that's actually true) if they don't have folic acid/vegtable folate sensitivities. I might try not taking any B-complex (or 1/2) since Freddd has said that doses of B1,2,3,etc above ~30mg, can increase folate needs. But my amounts seem to be below what he says causes that.

I also read again in a couple places that you were right, higher mb12 and ab12 didn't necessarily mean you needed more folate. That, folate need is all unique to the individual.

Yes, I get neon yellow urine from excess B2. I also got it when I took my B-complex 2x/day. That's what I attribute my urine color too. If that doesn't indicated wasted B2, great. But I think I'll just go with splitting it up to 4x/day to be sure.

 

[garyfritz]

its effect is dose dependent - one at low dose and completely different at high (around 300mg/kg of bw) doses.
how much you've used?

300mg/kg!?? I weigh 80kg so that would be 24 GRAMS for me!

I took 855mg/day of LCF (Doctor's Best) and a similar dose of ALCar (don't remember the brand).

 

[hvac14400]

300mg/kg!??

i can't edit my posts, so that's just a typo of coz - 30 mg/kg : )
and you must take it for about 1.5-2 weeks minimum to see any changes.
i remember taking 6 to 7 grams a day, when my bw was around 107kg, but the difference with just 3g was insignificant.

 

[garyfritz]

Ah, OK. BTW you should see an "Edit" link on the bottom line of your posts...

30 mg/kg = 2.4 g for me, which is about 3x what I was taking. What benefit did you see when you took those larger amounts?

Was it 30 mg/kg of L-carnitine, or of L-carnitine fumarate? I was taking 855 mg/day of LCF, which had 500 mg of L-carnitine.

 

[hvac14400]

30 mg/kg = 2.4 g for me, which is about 3x what I was taking. What benefit did you see when you took those larger amounts?

my activity level jumped like from 4 to 6-7, sometimes even to 8, so main benefit was increased energy production, stamina - that kind of things. and about once a month i was able to feel myself pretty "normal" for short period of time (less than a hour usually) - like it was pre-cfs.

Was it 30 mg/kg of L-carnitine, or of L-carnitine fumarate? I was taking 855 mg/day of LCF, which had 500 mg of L-carnitine.

i started from 3g of pure carnitine - 3 tabs of this per day:

http://ru.iherb.com/Now-Foods-L-Carnitine-1000-mg-100-Tablets/2507

never used fumarate in my life.

 

[Gretel]

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!

@whodathunkit

Good to hear you were able to make use of Carnitine and get past side effects. I've started up on it again since it seems I hit a bit of a saturation point with the other 3 of the DQ and my doses are MUCH smaller now (seem to get overstimulated by them now where as before I couldn't get enough!). Curious what helped you tolerate Carnitine in the end. Was it mainly B2/FMN that helped you? I am getting moderate headaches from it. I'm up to 1.3 drops of liquid so far. Energy level seems good though. Did you get headaches with Carnitine? I didn't come up with much when I searched, but thought I had read others' posts about headaches and Carnitine.
Thanks very much!

( @junkcrap50 fyi)

 

[whodathunkit]

Good to hear you were able to make use of Carnitine and get past side effects. I've started up on it again since it seems I hit a bit of a saturation point with the other 3 of the DQ and my doses are MUCH smaller now (seem to get overstimulated by them now where as before I couldn't get enough!). Curious what helped you tolerate Carnitine in the end. Was it mainly B2/FMN that helped you? I am getting moderate headaches from it. I'm up to 1.3 drops of liquid so far. Energy level seems good though. Did you get headaches with Carnitine? I didn't come up with much when I searched, but thought I had read others' posts about headaches and Carnitine.
Thanks very much!

@Gretel, for the most part, what helped me tolerate LCF was just not giving up. Plus all the co-factors that go along with the DQ. But I can't really point to any one thing that got me through it except perseverance. I stopped it a few times and circled back around to it, but never really discarded it. The last time I "stopped" I actually had forgotten about it because I couldn't seem to raise my dose, but the 250mg I was able to tolerate wasn't doing me any good. After a week or two of not taking it I felt more than usually crappy so I began to backtrack in my head to see what could be causing it. I realized I had forgotten LCF for some time, so added it back in. Voila! That was the "breakthrough" for me. I noticed immediate improvement in energy, and stamina, and mood when I added it in, and was able to quickly rachet up my dose to 1000mg/day. Worth noting is it took quite a long time to get to this point...months, but I can't remember how many. Probably between 6mos-1yr.

I never got headaches with LCF but have gotten them with detox supplements, and also with ALCAR (which has a bit different action than LCF). IMO boosting mitochondrial function causes a "detox" of sorts, in that things start moving that may have been stagnant before. This in turn causes the body to have more detritus to eliminate. Can't prove it, but that's what I think.

Glad you're getting good results from carnitine. Good luck!

 

[junkcrap50]

I've started up on it again since it seems I hit a bit of a saturation point with the other 3 of the DQ and my doses are MUCH smaller now (seem to get overstimulated by them now where as before I couldn't get enough!).

Gretel, are you saying that DQ doses are different now than they were before? That you restarted and are lower on them? That seems like a good sign. Maybe the side effects from LCF won't be as great then.

Thanks for tagging me. I'm waiting on a cofactor, B1, before restarting all the DQ again. I guess perseverance with carnitine is what's needed. From what I remember reading, it sounds like going off and then back on a DQ or cofactor seemed to do the trick for some people to get the FP working - strange that way.

 

[Gretel]

Gretel, are you saying that DQ doses are different now than they were before? That you restarted and are lower on them? That seems like a good sign. Maybe the side effects from LCF won't be as great then.

Thanks for tagging me. I'm waiting on a cofactor, B1, before restarting all the DQ again. I guess perseverance with carnitine is what's needed. From what I remember reading, it sounds like going off and then back on a DQ or cofactor seemed to do the trick for some people to get the FP working - strange that way.

Hi Junkcrap50,

Yes, I had to stop all of it because suddenly I became hypersensitive. It was the strangest thing after seemingly not being able to get enough! I suspect 1 of 2 things: I either had much deeper penetration with the B12 oils and suddenly everything became more effective, or the B2 really did reduce the need for folate by making it more effective. Or perhaps both. The breathing issue I posted about earlier turned out to be due to too much "Methylation" or methyl donors. I had to take quite a lot of niacin over a couple of days to reduce the effect. Both Mcbl and Adbl as well as folate seemed to cause it. I went off all for a day or two and then started having return of neck and back pain. So I started the B12s at a lower dose which significantly reduced the neck and back pain and then brought folate back on again because of some clear inflammatory discomfort/pain. I still have to be careful to keep my B12 higher than my folate to avoid increased pain. I started with 3-4 125mcg doses/day of folate and even that and the 50 µg in my multi caused some of the breathing difficulty. I started the carnitine and now have increased the folate doses to 500mcg starting this morning. I'm getting headaches again from the carnitine and the increased folate seems to help. So far no breathing difficulty. I suspect the carnitine is increasing my folate tolerance. I restarted the B2 since it may help with the headaches. Still doing potassium and magnesium--those I did not stop. I have not restarted the B1 yet but I think I should since supposedly it's necessary if supplementing potassium and B2.
Your plan to get cofactors (B1) in your system sounds like a good plan. Starting and stopping like you said may be the trick, though. Good luck to you and hope to hear how it's going for you.

 

[Gretel]

@whodathunkit
Much appreciated. That's helpful to hear. Sounds like perseverance and the willingness to put up with some pain/discomfort is key!

 

[alicec]

Yes, I had to stop all of it because suddenly I became hypersensitive. It was the strangest thing after seemingly not being able to get enough!

I'm struggling with exactly the same phenomenon at the moment.

It seems to have happened in two phases - a gradual need to reduce methyl and ado B12, then acetyl carnitine, then folate, and in the last few weeks a sudden extreme hypersensitivity. I have stopped carnitine and adoB12 completely and have been trying to work out how much of the other two to take but it seems to be getting less and less - tiny doses when I once had a seemingly insatiable need.

I keep wracking my brain about what has changed and don't come up with anything much, apart from having introduced LDN at a very slow rate over the last few months. This did seem to have a remarkably stabilising effect on my unstable blood pressure so I persisted with it, even though there does not seem to be any other benefit.

Then I thought the only way to work out if LDN is affecting my response to the DQ is to stop taking it, but ran into a different problem. This is not an easy thing to do. I didn't stop completely, just made a significant reduction in dose and this caused what I interpret as withdrawal symptoms. So I proceeded more cautiously.

In the meantime the hypersensitivity to the DQ seems to be increasing!

Since the DQ has been the single best thing I have ever tried I keep struggling with all this and don't give up - but it is really weird and I don't understand it at all.

If anyone has any insights, I'm sure we would all be grateful.

 

[junkcrap50]

@Gretel
Great! Glad to hear you figured things out, especially with the labored breathing. Sounds like you're on the right path for the Freddd Protocol. I have to keep reminding myself that even the great success stories were on the FP for a while before huge improvements.

If you're good without the B1, would adding it risk what's working? I don't know. Maybe just add it as a couple times per week or as your symptoms (since you have experience with it) dictates. Then again, it might help your hypersensitivity. Who knows - just thoughts.

I think B1 might explain some of my muscle aches, more so my burning muscles. And hopefully why carnitine seemed to cause something to deplete very rapidly. B1 is said to rapidly reduce lactic acid buildup, and it is a cofactor that metablises a reactant for lactate. Plus, it's a cofactor for a reactant that carnitine uses and transports for use in the Kreb's cycle. Basically:

Lactate -> Pyruvate | then | Pyruvate + B1 -> CoA |then| CoA + Carnitine -> Krebs Cycle
​

I'm working on a post with images and pathways that will explain and my idea, but I have other things on my plate right now. Who know's if it will work, but I wanted to test B1 before restarting the DQ. There's not much info what people's B1 induced deficiency symptoms were, despite some people saying it was important for their improvements/FP.

 

[junkcrap50]

I have stopped carnitine and adoB12 completely and have been trying to work out how much of the other two to take but it seems to be getting less and less - tiny doses when I once had a seemingly insatiable need.

@alicec, or @Gretel too, I'm not sure exactly what is causing your hypersensitivity.

(1) One possibility is that you are currently turning on methylation in one particular area, such as the brain or the gut's neurotransmitters, thereby making you more sensitive to over-stimulation/hypersensitivity. Or your methylation cycle is favoring making (certain?) neurotransmitters vs doing other methylation tasks. I don't know if that is a plausible theory, but @Freddd has said that healing turns on at different layers and methylation is involved in 900. Who knows the order of layer-healing prioritization.

(2) A second possibility is that you have "filled up your tanks," so to speak. That your needs for mb12, ab12, and folate are no longer so great now that you have a store in your body and just a little bit is needed. Several people who had been taking very large doses for several months have noted they no longer need as large of doses of the DQ to keep symptoms away. Unfortunately though, they didn't mention developing hypersensitivities. They just wanted to quit spending so much money. I'll have to search to find who exactly. However, I don't see why, given a good balance of DQ and critical cofactors, that high doses would start to cause problems.

(3) A third option is that I remember my naturopath once saying that I had a headache type overstimulation hypersensitivity because an inflammation pathway opened up and "too much inflammation was trying to path through it." This symptom for me started or was caused by taking certain antioxidants and anti-inflammatories. I forget which exactly, but not unlike curcumin, CoQ10, or Anatabloc. This was way before the Freddd Protocol.

I think #1 is most likely of my theories.

but ran into a different problem. This is not an easy thing to do. I didn't stop completely, just made a significant reduction in dose and this caused what I interpret as withdrawal symptoms. So I proceeded more cautiously.

I'm currently on LDN as well (4.5mg), but started years before the FP. I've never heard of LDN being much of a problem or causing withdrawal, but I'm not surprised it could. LDN is an opiate antagonist, but the low doses tricks the body to producing more natural endorphrins and enkephalins to compensate. So it very well could have caused some type of withdrawal for you. In fact, there are a few papers that studied using LDN to help with drug abuse and opiate dependency, supposedly to help prevent/ease withdrawal symptoms.

I wouldn't think there would be any overlap between LDN/endorphins/enkephalins and the DQ/methylation. A brief couple searches of the two mechanisms didn't show anything for me. Maybe the endorphins are interacting with your neurotransmitters somehow. I don't know though.

 

[whodathunkit]

One possibility is that you are currently turning on methylation in one particular area, such as the brain or the gut's neurotransmitters, thereby making you more sensitive to over-stimulation/hypersensitivity. Or your methylation cycle is favoring making (certain?) neurotransmitters vs doing other methylation tasks.

I was kind of thinking something like this, although I right now I couldn't have put it like that. Thank you, @junkcrap50.

If by hypersensitivity you guys are talking about overstimulation then I definitely had that. I had jitters, anxiety, insomnia, etc. In response to all of these symptoms I increased everything except LCF to massive doses (titrated to 40mg/day folate, 5mg/day injectable mB12, 10,000mcg/day adB12), with good effect. The extreme overstimulation went away fairly quickly with the big doses, although there was still some up & down. Please note that this is not something I'm suggesting you do (only try if you're willing to read up on the ramifications and live with the sides until things stabilize), nor am I suggesting it will work in every case, just saying it's what worked for me.

The LCF was a bit of a different beast but I did ultimately acclimate to it, too, IMO because of the foundation I laid by megadosing the rest of the DQ.

Basically, when I did it the way Freddd said do it, it worked the way he said it usually does.

 

[alicec]

In response to all of these symptoms I increased everything except LCF to massive doses (titrated to 40mg/day folate, 5mg/day injectable mB12, 10,000mcg/day adB12), with good effect.

Well I have done that, plus was taking 1000 mg acetyl carnitine. In reaching those sorts of doses I actually didn't have many overstimulation symptoms and definitely was getting benefit.

The jitteriness etc has happened more recently, starting gradually, then dramatically increasing. The benefits also seem to have disappeared. I've actually now stopped taking all the DQ while I rethink.

I think #1 is most likely of my theories.

I have considered variations on all of those theories, plus some others, but nothing has really helped me to decide what to do next!

I've pretty much rejected theory 2. I used to think it a possibility when it just seemed like I needed to reduce the dose, but the recent sudden hypersensitivity is difficult to reconcile with this notion.

Actually some version of 3 is what I most favour and I'm imagining that the LDN might have been instrumental in opening up a pathway that was formerly closed.

wouldn't think there would be any overlap between LDN/endorphins/enkephalins and the DQ/methylation

I don't think the endorphin/enchephalin pathway is really the mechanism for the LDN effect. Rather it has some sort of anti-inflammatory effect which modulates glial cell activation. See here.

With this in mind I first thought that the sensitivity was a good thing - neurons are now able to respond which couldn't previously. I just needed to learn to manage it.

Then things really got out of hand!

I don't know of course that the LDN has anything to do with it, but it was the only significant change so seems like a likely candidate, hence my idea of reducing LDN to see if it made any difference. Well that wasn't a good idea either so now I feel a bit stuck. Maybe I'll try increasing.

I'm thinking aloud here, have no idea really. Thanks for the input.

 

[Crux]

I'm struggling with exactly the same phenomenon at the moment.

It seems to have happened in two phases - a gradual need to reduce methyl and ado B12, then acetyl carnitine, then folate, and in the last few weeks a sudden extreme hypersensitivity. I have stopped carnitine and adoB12 completely and have been trying to work out how much of the other two to take but it seems to be getting less and less - tiny doses when I once had a seemingly insatiable need.

I keep wracking my brain about what has changed and don't come up with anything much, apart from having introduced LDN at a very slow rate over the last few months. This did seem to have a remarkably stabilising effect on my unstable blood pressure so I persisted with it, even though there does not seem to be any other benefit.

Then I thought the only way to work out if LDN is affecting my response to the DQ is to stop taking it, but ran into a different problem. This is not an easy thing to do. I didn't stop completely, just made a significant reduction in dose and this caused what I interpret as withdrawal symptoms. So I proceeded more cautiously.

In the meantime the hypersensitivity to the DQ seems to be increasing!

Since the DQ has been the single best thing I have ever tried I keep struggling with all this and don't give up - but it is really weird and I don't understand it at all.

If anyone has any insights, I'm sure we would all be grateful.

One process, among the many, is that the intake l-carnitine increases nitric oxide production,(NO), which is good unless there is an Inflammatory process, whereby, the NO may be converted to peroxynitrite, causing negative neuro symptoms.

Low dose naltrexone, among other things, lowers the production of NO by reducing the enzyme, iNOS, which may reduce production of peroxynitrite.

B12 scavenges peroxynitrite, Folate is necessary for the formation of BH4, which is utilized to form NO.

http://www.ncbi.nlm.nih.gov/pubmed/15694688
http://www.ncbi.nlm.nih.gov/pubmed/25289711
https://consultqd.clevelandclinic.o...beyond-the-arteries-to-the-heart-and-kidneys/

 

[Crux]

@Gretel , and everyone having painful side effects from l-carnitine, or NO donors, etc. ;

This article is written using a lot of technical jargon, but it does list in chart form many of the painful results of excess peroxynitrite.

http://www.enzim.hu/~lbarna/articles/17667957.pdf


- Hope you all get to feeling better -

 

[alicec]

Low dose naltrexone, among other things, lowers the production of NO by reducing the enzyme, iNOS, which may reduce production of peroxynitrite.

Thanks so much for all that info. I hadn't thought about that aspect at all.