Freddd's Protocol: Penetrative Dose Questions

Freddd

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What is the neurological risk that this protects from? Can you elaborate?
Hi SwanRonson,

If l-methylfolate (and the worning goes back to folic acid and why the doses were set to 400mcg with 800mcg as the maximum so as to prevent people from correcting their blood errors with folate only and not take the B12 for the nervous system. Folate can start reactions going that have to have B12 the warned against onset of Sub Acute Combined Degeneration (demyelination from methyltrap).
 

SwanRonson

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Is the reverse (i.e. b12 without folate) in any way dangerous? I see some people take large amounts of methylb12, like injections, without accompanying folate. I know you've said that large injections of CyCbl, HyCbl or crappy MeCbl can be bad. But, assuming that the quality is 5 star, is there any known risk, or any risk you can calculate based on your research/experience?
 

Freddd

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Is the reverse (i.e. b12 without folate) in any way dangerous? I see some people take large amounts of methylb12, like injections, without accompanying folate. I know you've said that large injections of CyCbl, HyCbl or crappy MeCbl can be bad. But, assuming that the quality is 5 star, is there any known risk, or any risk you can calculate based on your research/experience?
Hi SwanRonson,

I really don't know. I had folate deficiency symptoms my whole life. If they got worse when I started MeCbl I couldn't tell you. I was only injecting 2.5mg daily before I found Metafolin. I didn't find out about paradoxical folate deficiency until 4 years later. Edema and congestive heart failure continued until high doses of Metafolin and LCF were added, MCS, IBS, angular cheilitis and a few other things continued until I got Metafolin up into the 8mg daily area, then they became intermittent and finally mostly gone as I get up to 19200mcg of Metafolin. Without the Metafolin I might have died before now.
 

SDSue

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Please, allow me to clarify. The method you outline should work if those brands will work for you. However the order it is done in is a necessary part.

  1. All basics in place
  2. Titrate body from start to 15 or 20mg a day of MeCbl and 10mg AdoCbl once a week and no more noticeable daily response from either
  3. Methylfolate titrated to sufficiency
  4. Potassium adjust to sufficiency
  5. L-carnitine titrated to effectiveness, perhaps 500-1000mg and an increase of 250mg more makes no difference.
  6. SAM-e is titrated
  7. TMG is titrated. If it does nothing, discontinue
  8. Biotin is titrated
  9. B1, B2 and B3 are adjusted if needed.
After this then the CNS penetration test is tried. The CNS effect is normally far more subtle than the body startup and if there is any body startup left, it overwhelms the CNS effects making the CNS trial less effective. The CNS can be tried with MeCbl first. Then a couple of days later try 50mg of the AdoCbl, first 2 tablets, adding one each half hour to total. The AdoCbl might only work once since AdoCbl is persistent in the mitochondria. Each of these two trials can let you know if you have a difficult to enter cerebral spinal fluid. It appears to be a transport problem of unknown cause which many with neurological diseases have, including FMS and CFS.
Great summary, Fred! It's like "Methylation for Dummies", which is what this brain needs. Thanks.

It's been up and down the past 6 years and other problems such as a dangerous fallback to worse damaged nerves because of a glutathione trial.
Do you have a theory on this? Within an hour of having an IV glutathione, I went from moderately functional to bed bound from the horrific CNS reaction. Apparently this isn't rare in our circles?
 

Freddd

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Do you have a theory on this? Within an hour of having an IV glutathione, I went from moderately functional to bed bound from the horrific CNS reaction. Apparently this isn't rare in our circles?
Hi SSSue,

NOW I do, See the post I started the other day, http://forums.phoenixrising.me/inde...ase-cfs-and-fms-with-extreme-prejudice.35251/

It just so happens that a reaction like this is a hallmark response for CblC which causes glutathione to induce "catastrophic b12 deficiency". Unfortunately it isn't rare. The differences I have seen are rate of onset and severity. It didn't hit me in an hour, but then I was injecting 7.5mg 4 times a day of MeCbl. I felt it in an hour or two and it worsened by the hour. I had healed a lot before hand so it didn't put me in bed. Of course I didn't do IV, so the stuff had to be absorbed and synthesized from precursors and it still hit in an hour or two. Whey was the slowest for onset so maybe there is a dose relationship. In any case it was devastating.
 
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SDSue

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Devestating, indeed, @Freddd.

As always, thanks for the info. Embarrassingly enough, I read and even liked the post to which you refer. Unfortunately, that's not rare either! Have you found that those of us poisoned by glutathione follow a pattern for methylation supplementation responses?
 

Gondwanaland

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@Freddd I ordered a SOD supplement with glutathione in it. It contains 25mg of glutathione, and I took only a sprinkle from one capsule. What I felt a couple of hours later can be only described as instant B12 deficiency :wide-eyed:
  • dark fogged depression
  • muscle tension
  • back pain
  • increased tension in abdomen, neck and shoulders
When I realized what was going on I took a MB12 dose and it went away. Thank you so much for your warnings!
 

Freddd

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Devestating, indeed, @Freddd.

As always, thanks for the info. Embarrassingly enough, I read and even liked the post to which you refer. Unfortunately, that's not rare either! Have you found that those of us poisoned by glutathione follow a pattern for methylation supplementation responses?
Considering that the standard treatment of HyCbl (doesn't work for 1/3, works poorly for rest), folic acid (works poorly at best) and carnitine (may or may not be correct for any given person) works poorly for adult onset CblC disease according to all the articles. I would say that they really have no idea.

I found that for the variation I appear to have and similar ones, that I have come to a solution that uses AdoCbl, MeCbl, l-methylfolate and trials to determine the type of carnitine (LCF 90% and ALCAR 10%), pays attention to the electrolytes (sudden low potassium) and the basics etc. The deadlock quartet works far better than the "standard" but requires a lot of work to customize it and doing it isn't easy. We have to learn how to manually balance things that ought to be automatic. It makes no assumptions about how well the various parts of the b12 and folate systems work. Also, if you haven't had your thyroid checked that would be a good thing to do. It's a common problem.

I have several close calls to the wheelchair and have managed to back off each time and recover from most of the symptoms. Basically I have to manage the unstable areas and be 100% regular in taking everything on time. It's a high compliance program. I have to take enough potassium every day often enough, same with Metafolin and MeCbl. For me the AdoCbl is fairly stable but it wasn't for my daughter. Carnitine is another stable item for me. Anyway, I think you get the idea. You need to get going sooner than later to stop damage that is happening. If I knew 11 years ago what I know now, I could have a lot less neurological damage.
 

SwanRonson

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Hi SwanRonson,

I really don't know. I had folate deficiency symptoms my whole life. If they got worse when I started MeCbl I couldn't tell you. I was only injecting 2.5mg daily before I found Metafolin. I didn't find out about paradoxical folate deficiency until 4 years later. Edema and congestive heart failure continued until high doses of Metafolin and LCF were added, MCS, IBS, angular cheilitis and a few other things continued until I got Metafolin up into the 8mg daily area, then they became intermittent and finally mostly gone as I get up to 19200mcg of Metafolin. Without the Metafolin I might have died before now.
Thanks for entertaining the question. The reason I asked is that I wondered if it's beneficial to begin a small dose (like 50-100mcg) of 5 star MeCbl ahead of time, along with the cofactors, and allow one's b12 levels to come up a bit before bringing in the methylfolate to launch startup. Since methylfolate can "start reactions going that have to have B12," it might be a good insurance policy to have a decent amount of b12 in your system ahead of time. Just a thought.
 

whodathunkit

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@sheclimber: not @Freddd but I believe I read him say that he finally decided it was almost impossible to get a CNS penetrating dose with sublingual.

The sugar from all those sublinguals would likely rot your teeth, at any rate. About the only effective ones now are Enzymatic Therapy, they are 1000mcg/lozenge, and are very, very sweet.

Some on here have been having good luck with a mB12 oil:

http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/page-10#post-573075

There may be other threads on B12 oils, too, so maybe search for those.

Transdermal oils may be an alternative for those who want/need high-dose mB12 but can't get injections for whatever reason. I don't have any idea about the effectiveness of oil for CNS penetration, however.

Hope that was not too unhelpful. :)
 

aturtles

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@sheclimber: not @Freddd but I believe I read him say that he finally decided it was almost impossible to get a CNS penetrating dose with sublingual.
Hmm. I don't remember him saying that. Link?

I myself would still consider 5mg-20mg in an hour or two a penetrative dose.

@sheclimber
The sugar from all those sublinguals would likely rot your teeth, at any rate. About the only effective ones now are Enzymatic Therapy, they are 1000mcg/lozenge, and are very, very sweet.
This I can disagree with from direct experience. I use both Jarrow 5mg MeCbl and Country Life 5mg MeCbl (methylcobalamin) and both are effective. I've tried Enzymatic Therapy and did not find them so much more effective, and stopped using them.

The trade-off for me is that the Jarrow has citric acid which, if you keep it dissolving in your mouth all day, as oral mucosa absorption requires, your teeth will start to hurt, even if you use sensodine or similar toothpaste. I can't use them all the time.

The CL brand does not have citric acid, so my teeth tolerate it better, but it's very delicate and depending on your mouth and saliva, it might not last more than a few minutes, even tucked up between teeth and gum.

I use both. For people just starting, I typically recommend the Jarrow, because it's not as fragile in the mouth, and then if they keep going, get some experience with letting the tabs absorb slowly, I'll graduate (heh) them to the Country Life.

See my disclaimer for all the stuff about how I'm not an expert. :)
 

whodathunkit

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Hmm. I don't remember him saying that. Link?
Sorry, don't have it. A search of @Freddd's posts in the last six months may turn it up, but I don't have time to do it. I don't think I dreamed him saying this, though. I think that's why he went back to injections. He trialed the sublinguals to see if he could do without injections and then decided he couldn't.

That's not to say that sublingual mB12 is useless. Far from it. Just that it's probably not possible to get a CNS penetrative dose with it, at least from Freddd's perspective.

As far as the efficacy of the brands: you may well be correct. I don't use the sublinguals any more since I get injections from my hematologist to treat anemia. When I used them I did find Enzymatic Therapy to be overly sweet. And I remember Freddd and some other people saying maybe CL wasn't so effective any more, at least not for them. Manufacturers do change their formulations sometimes. But I can't say since I don't use them, so maybe I shouldn't talk about them any more. Just trying to pass along some information.

All in all, though, if I didn't have access to injections I would probably try to go with an oil for mB12 delivery. I'd use sublinguals as a last resort. Because of the issues with additives that could affect my teeth if no other reason.

Speaking of, I wish Anabol Naturals didn't change their formula from powder to sublinguals. I liked the powder so much better...no taste at all.
 
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aturtles

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Sorry, don't have it. A search of @Freddd's posts in the last six months may turn it up, but I don't have time to do it. I don't think I dreamed him saying this, though. I think that's why he went back to injections. He trialed the sublinguals to see if he could do without injections and then decided he couldn't.

That's not to say that sublingual mB12 is useless. Far from it. Just that it's probably not possible to get a CNS penetrative dose with it, at least from Freddd's perspective.
You are right Freddd uses injections. But not everyone can do injections for various reasons.

So I asked him, and here's my understanding of his answer: It depends on the quality of the brand, but yes, it is possible. A penetrative dose is about getting enough of the MeCbl into the blood serum, so that enough gets through the BBB (blood-brain barrier), so that enough gets into the CSF (Cerebrospinal fluid). In this regard, a large enough dose of sublingual tabs is identical to an injection's effects. Again, depending on the brand's quality of MeCbl, and how the tabs are absorbed into the serum via the oral mucosa.

So, yes: a penetrative CSF dose is possible from tabs.

Your teeth and gums may suffer, of course, but you knew that. :)
 
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Considering that the standard treatment of HyCbl (doesn't work for 1/3, works poorly for rest), folic acid (works poorly at best) and carnitine (may or may not be correct for any given person) works poorly for adult onset CblC disease according to all the articles. I would say that they really have no idea.

I found that for the variation I appear to have and similar ones, that I have come to a solution that uses AdoCbl, MeCbl, l-methylfolate and trials to determine the type of carnitine (LCF 90% and ALCAR 10%), pays attention to the electrolytes (sudden low potassium) and the basics etc. The deadlock quartet works far better than the "standard" but requires a lot of work to customize it and doing it isn't easy. We have to learn how to manually balance things that ought to be automatic. It makes no assumptions about how well the various parts of the b12 and folate systems work. Also, if you haven't had your thyroid checked that would be a good thing to do. It's a common problem.

I have several close calls to the wheelchair and have managed to back off each time and recover from most of the symptoms. Basically I have to manage the unstable areas and be 100% regular in taking everything on time. It's a high compliance program. I have to take enough potassium every day often enough, same with Metafolin and MeCbl. For me the AdoCbl is fairly stable but it wasn't for my daughter. Carnitine is another stable item for me. Anyway, I think you get the idea. You need to get going sooner than later to stop damage that is happening. If I knew 11 years ago what I know now, I could have a lot less neurological damage.
HI @Freddd ,

I have been on your active b12 protocol for about 3 or 4 weeks. My energy is much more stable:) But I am dealing with brain fog at times that is awful. Is it that I might need more b12 after taking the folate throughout the day?

I can not believe how much potassium I need. I practically live on bananas, coconut water and potatoes, and this was years before doing this protocol. I am so happy to learn about potassium supplements, they are wonderful and have taken care of so much of my "malaise" I can not believe it.

When I added in 2 doses of 100mcg of LCF, I feel as if my insulin crashes. Should I try the ALCAR? I'm not noticing any benefits from the LCF. Have gained quite a bit of abdominal weight (mostly water) in the last few years and was hoping to see some change, maybe too early.

Also, can you please tell me what brand you prefer of b12? I have searched and can not find this info. I am taking Solgar and want to experiment.

I am very grateful to you, thanks so much. It feels like I don't really know how to thank you for all of your generous giving of your time.

Regards,

TropicalKid
 
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Well, I went ahead and tried it using the Anabol Naturals. Yes, they are very sweet, but they haven't seemed to have any negative impact on my teeth - I would know because I've been going to the dentist twice a week as she agreed to try an ozone experiment with me to try and help me avoid a root canal. (Sadly, I don't think it's going to work.)

So did I get a CNS penetrative dose? Maybe? I really went for it - 5mg of MeB12 every 30min(ish) up to a total of 50mg. I felt pretty good, though I've been feeling steadily better and better since starting the protocol, so it wasn't stark. The most interesting thing, was that it seemed that this tooth which has proved to be mostly dead woke up and started having some sensitivity again.

Also, didn't know if I needed to, but I also upped my folate quite a bit that day, as I seem to be hovering at the edge of slipping into folate deficiency with my regular protocol.

Maybe that means that low CNS B12 isn't an issue for me? (And thus maybe I don't have ME/CFS - I never was diagnosed with ME/CFS specifically - once I started realizing it as a possibility, I was already being treated for adrenal fatigue and had discovered the methylation issues, so I just kept moving forward with that. I do know that my methylation panel looked almost identical to what Rich described for CFS - that's actually how I came to this forum in the first place.)
 

heyitisjustin

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@sheclimber
Some people are extremely sensitive, others need quite large doses. You don't know which you are until you try the supplements. The best thing is to start very low and increase very slowly. Even Freddd says this. I'm talking 50mcg or less of methylfolate and B12 to start. Certainly not mg doses.

If you're sensitive, it can put you in the hospital. Be sure to have niacin on hand before starting in case you run into trouble. Even 50mcg could be too much for some people.

I've been doing this for 2 years and I'm not even taking 50mcg.
I was taking a non-sub-lingual mB12 and was taking fairly large doses. I then switched to the enzymatic therapy sub-Iingual mB12. I hadn't read enough to realize what a good starting dose was and started at 500 mcg (half a pill). I initially took it on its own and perhaps for that reason it dissolved rather quickly and I probably didn't absorb much. I thought I was handling it well so I went to 1mg the next day. I took it with other sub-Iinguals which seemed to slow absorption and thereby increase the amount absorbed.

I had horrible naseau, cold sweats, racing heart, leg cramps, shivers and couldn't sleep the entire night.
I am going to significantly lower the mb12 and ramp up probably half a pill every week or two.

My question is regarding what the side effects indicate.
My guess is that the cramps indicated a need for potassium.
I did have a racing heart even on the 500 mcg and I think it might've disturbed my sleep too.
Does anyone know what I should be doing to address these symptoms (mainly the heart racing/disturbed sleep) besides reducing dosage.
I am taking lots of folate and 250 potassium.

It also might be a good idea for people who can handle it to take sublinguals (I took B1,B2 with B12) together to increase there absorption