Are LCF dose and potassium demand related?

[Kitsune]

I agree that it sounds like the potassium demand means something is out of balance somewhere - and yes it's scary to be so dependent on it. That makes 2 things for me, as I'm already very dependent on high doses of vitamin C, and frankly I just don't need that kind of worry. I'm only taking 250mg of LCF and am needing upwards of 2,000mg extra K a day. On top of this, I haven't noticed any benefit. I'm thinking I will cut the LCF out and see how things go. I don't know why, but every single amino acid I've ever supplemented has either done nothing for me or made me feel worse.

 

[Kitsune]

@PatJ What is an OI increase?

 

[PatJ]

What is an OI increase?

It's where my orthostatic intolerance suddenly increased. I'm now bedbound for much of the day. I can be upright for roughly 1/2 hour every 1.5 hours before my pulse pressure (systolic minus diastolic) starts to narrow so much that I feel increasingly dizzy, hot, brainfogged, and have other OI symptoms.

My body doesn't manage my blood pressure properly. It's partly due to a spinal cord injury (Transverse Myelitis) I received in 1991, and partly due to some other unknown cause that made it suddenly and permanently increase in June of this year.

 

[Johnmac]

I get OI (presumably from falling adrenal function) when my folate dose starts to lose effectiveness, & I need to raise. Raising gets rid of it. For what it's worth.

 

[Kitsune]

It's where my orthostatic intolerance suddenly increased. I'm now bedbound for much of the day. I can be upright for roughly 1/2 hour every 1.5 hours before my pulse pressure (systolic minus diastolic) starts to narrow so much that I feel increasingly dizzy, hot, brainfogged, and have other OI symptoms.

My body doesn't manage my blood pressure properly. It's partly due to a spinal cord injury (Transverse Myelitis) I received in 1991, and partly due to some other unknown cause that made it suddenly and permanently increase in June of this year.

Very sorry to hear I hope you soon find some healing.

 

[Freddd]

An update on Metafolin doses. I have 8 years of titrating on it from 400mcg per day to 28,800 mcg daily right now. The results are a smooth curve approaching a limit. I have had low folate symptoms most of my life. I have scars on top of scars from angular cheilitis on both sides of my mouth. It was constant from starting CyCbl and folic acid in Special K at age 12 though intermittent before then. I also had IBS from about age 6 until I got daily Metafolin to about 8mg. I had all the symptoms on the group 3 of the list most of my ;life. When I started Special K, that year I went from missing 1/6 of the school year to 1/3 of the school year and it continued indefinitely. I was never without folic acid from then until I started systematically getting rid of it about 7 years ago, realizing that it blocked the effectiveness of Metafolin.

So I went from dozens of folate primary symptoms and more than 100 folate secondary symptoms 12 years ago. As the Metafolin went up (after getting rid of folic acid) the number of symptoms affected by folate and the degree of severity decreased with each increase in folate. At 12+mg/day the periodic (2 week) folate deficiency symptoms started fading. I am down to one difficult to describe symptom each 2 weeks now. The edema is entirely gone and has been for 3 or 4 years now except for the bi-weekly episodes. Now at 28,800 mcg that is gone too. All that happens each 2 weeks now is a barely noticeable difference in urine. So as the dose increased, and after carnitine, all "internal triage levels" were active and healing, the number of symtoms and intensity decreased approximately directly with the dose of Metafolin. There is virtually no where for it to go now. The Deplin studies showed on tested symptoms, that 15 and 30 mg daily were far more effective than 7.5 mg. My experience is that (28.8 mg) 30mg of Deplin all my folate deficiency symptoms are essentially 100% gone. There is nowhere for it to improve. I can see that there is a bi-weekly effect of reduced serum folate for unknown reason only by the change in the amount of B12 visible in my urine, which increases when folate decreases, it appears to affect the serum half-life of the unbound B12.

The approximate curve appears to show a halving of the symptoms-severity index for each doubling of the dose. However, 400 mcg of Metafolin increased the quantity and intensity of symptoms tremendously except that it also showed a reduction of several obvious symptoms, angular cheilitis most obviously. That was my number one indicator up to about 12,800 mcg when it went away except for bi-weekly episodes. Further the first 400 mcg increased my potassium need to 1200 mg daily. Each doubling of Metafolin increased the potassium need by about 200 mg daily. AdoCbl was already in place when I added Metafolin so I don't know the effect of that. Over time and some symptoms went away so did the potassium needed faded a little. LCF produced an increased need of about 600 mg of potassium daily, but it also kicked off additional triage levels healing. When I started Metafolin and reached 2400 mcg per day, I lost 45 pounds of water the next month. When I added LCF I had a huge response in energy and mood, lost another 45 pounds of water (85 in all as 5 was regained) in the next month, lost 40-50 pounds of fat and restored my atrophied muscles about 50 pounds overall. My thigh muscles went from thumb thickness to normal skiers thighs in a couple of years and all my other muscles except the ones with the damaged dorsal roots in my back. After my muscles restored in several years, the potassium need decreased back to about 1600-2000 mg daily. When I corrected the copper deficiency 2 months ago, on the third day, my potassium need went back up to 2200-2400 mg/day.

I hope this helps. Metafolin appears to have a direct dose-related effectiveness behavior up to about 30 mg after folic acid and/or excess vegetable folates and/or folinic acid are eliminated..

 

[Johnmac]

@Freddd, I assume the 28 mg of folate is a Fred thing, & not necessarily something we should all be aiming at?

I've done extremely well titrating up to 7.2 mg/day over a few months - fatigue, sleep requirement, brainfog, libido, exercise tolerance, gut & blood-sugar response are greatly improved. I've stopped my thyroid meds, & reduced my hydrocortisone from 30 mg to 5 mg/day. DHEA is down from 37 mg to 12 mg/day.

I take the m-folate sublingually, which may increase (double?) the penetration.

I added tyrosine, which pretty much finished off my chronic fatigue - tho mostly it's been the Freddd Protocol.

Like most people here, I would love to not have to pay thousands of dollars for very high doses, & am hoping I am near my ceiling with the DQ dosages.

Except carnitine, with which there is clearly a long way to go. My big roadblock last year was horrendous carnitine (LCF) crashes. Once I'd adopted your suggestion to switch to liquid carnitine, they ended. I'm now up to 2 mg carnitine per dose. Even 2.5 last week knocked me around, so I had to come down again. I can be patient with that one.

I assume the only reason for liquid carnitine is that you can titrate it more finely? I'd like to switch back to LCF one day (when I can handle higher doses), as the fumaric acid component fixed my psoriasis: nothing else does.

(By the by, I tried iodine (in which 96% of all people are allegedly deficient) to no effect. But the pyroluria protocol has been brilliant at removing anxiety, & making my skin much nicer. I think everyone with anxiety should at least have a look at pyroluria, which Dr Walsh says about 10% of the population has.)

I do a fair bit of heavy metal chelation (Cutler), which has been good for numerous things over a much slower time-span than your protocol takes. Lately the mobilised mercury caused very unpleasant sulphur thiol reactions (nausea, exhaustion). I began in the methylation game with the Rich Protocol, way back, which removed my thiol symptoms & allowed me to chelate. (Presumably it was the methylfolate.) I don't know why they've come back now.

But it's the Freddd Protocol which has afforded me the biggest gains of all, & the fastest. I was barely functioning as recently as 3 months ago.

So thanks!

 

[Freddd]

@Johnmac,

Glad to hear you are doing better. The 28mg is how much I am using is a result of titration by criteria, getting rid of every responsive folate deficiency symptoms. My partner only appears to benefit from something under 4mg a day but she never had FMS or CFS nor does she have problems with vegetable folates, never had refeeding syndrome and so forth. It appears to be healing a couple of her problems, but almost all are the result of traumatic injury. So far she hasn't developed FMS as a followup of trauma and does have nerve damage.

 

[Johnmac]

Thanks @Freddd. Yes, I was barely functional 3 months ago. Now I work a very demanding job in a very demanding country - all whilst reducing then stopping most meds.

Can I ask a few questions?:

* How do you titrate by criteria? That is, upping folate et al has helped each time - but it doesn't fix everything overnight. I doubt that if I upped it by double the amount each time, it would fix everything. So what are the criteria exactly? "Some improvement"?

* Does taking folate sublingually increase its penetration, & by how much (if you know)?

* There's some argument over whether the mB12 molecule is small enough to penetrate mucosal tissue. I assume the m-folate molecule is? (This has important implications vis a vis whether you should take it near food. I.e. if it penetrates mucosal tissue, & it's taken sub-lingually, why not take it immediately after a meal?)

* I assume the only reason for liquid carnitine (as opposed to some other form) is that you can titrate it more finely?

* I've got little bumps on my forehead, since beginning the Protocol. Dry, very tiny, scaly, not especially troubling. What might they be?

* Re the DQ, do you subscribe to the "filling the tank" theory? I.e. that one titrates up & up till one hits one's useful ceiling; then after a while (commonly many months) at that maximally useful dose, one's tank is full - whereupon you can bring your doses down again, without untoward effects?

Thanks...

 

[Freddd]

Thanks @Freddd. Yes, I was barely functional 3 months ago. Now I work a very demanding job in a very demanding country - all whilst reducing then stopping most meds.

Can I ask a few questions?:

* How do you titrate by criteria? That is, upping folate et al has helped each time - but it doesn't fix everything overnight. I doubt that if I upped it by double the amount each time, it would fix everything. So what are the criteria exactly? "Some improvement"?

* Does taking folate sublingually increase its penetration, & by how much (if you know)?

* There's some argument over whether the mB12 molecule is small enough to penetrate mucosal tissue. I assume the m-folate molecule is? (This has important implications vis a vis whether you should take it near food. I.e. if it penetrates mucosal tissue, & it's taken sub-lingually, why not take it immediately after a meal?)

* I assume the only reason for liquid carnitine (as opposed to some other form) is that you can titrate it more finely?

* I've got little bumps on my forehead, since beginning the Protocol. Dry, very tiny, scaly, not especially troubling. What might they be?

* Re the DQ, do you subscribe to the "filling the tank" theory? I.e. that one titrates up & up till one hits one's useful ceiling; then after a while (commonly many months) at that maximally useful dose, one's tank is full - whereupon you can bring your doses down again, without untoward effects?

Thanks...

Hi Jonhmac,

"How do you titrate by criteria? That is, upping folate et al has helped each time - but it doesn't fix everything overnight. I doubt that if I upped it by double the amount each time, it would fix everything. So what are the criteria exactly? "Some improvement"?"

For instance, with folate, when I was titrating it, I would increase it 50% and some of the symptoms would fade. I did it some more and more would fade. I added more and the first ones healed and were gone. Added more and more faded and disappear. Basically what I found the response curve to be is an estimated 50% reduction of "severity-symptoms". By 8mg most of the symptoms were gone. At 28.8 mg they are all gone. With potassium, I took 300mg each several hours until my stomach unlocked, that being the only potassium symptom I get now, along with increased BP. With copper I titrated by 2.5mg a day until the last one didn't make a noticable increase in rate of improvement.

Does taking folate sublingually increase its penetration, & by how much (if you know)?

I've never tried. Some of said yes.

There's some argument over whether the mB12 molecule is small enough to penetrate mucosal tissue

People can argue all they want. However, it indisputably works well at 10mg/ml MeCbl in Sterile saline without any other ingredients that ruin it, like glycerin and anything that makes the nose run.. It is by far the best way I know of. I use a 1/10 ml metered sprayer, I spray in each nostril each 10 minutes. You don't want it running down your throat. With a light spray it stays where it needs to be to be absorbed immediately and then as the mucous slowly carries it down to the throat it is absorbed for perhaps 12 hours. I find 10 fast sprays in a row in each nostril at bedtime with my head tilted way back so as to get it to run up into the sinuses and lasts all night. Eventually it all goes down the throat and is slightly absorbed there too. Based on a series of tests I did with urine colorimetry the absorption is about 5%.

I assume the only reason for liquid carnitine (as opposed to some other form) is that you can titrate it more finely?

That is my opinion.


I've got little bumps on my forehead, since beginning the Protocol. Dry, very tiny, scaly, not especially troubling. What might they be?

No idea.

Re the DQ, do you subscribe to the "filling the tank" theory? I.e. that one titrates up & up till one hits one's useful ceiling; then after a while (commonly many months) at that maximally useful dose, one's tank is full - whereupon you can bring your doses down again, without untoward effects?

There are no tanks. However, there are "parking places" for AdoCbl and after reaching equilibrium, I found that I can take that once per week to 1 per month without noticing any difference. Two months makes a noticeable difference. Potassium decreases slow as any given tissue completes healing.

However, A and D are fat soluble and too much can be a problem. Mine is measured each 3 months or so and I am at about 66% percentile on 5000 iu a day.

 

[Johnmac]

Hi Jonhmac,

"How do you titrate by criteria? That is, upping folate et al has helped each time - but it doesn't fix everything overnight. I doubt that if I upped it by double the amount each time, it would fix everything. So what are the criteria exactly? "Some improvement"?"

For instance, with folate, when I was titrating it, I would increase it 50% and some of the symptoms would fade. I did it some more and more would fade. I added more and the first ones healed and were gone. Added more and more faded and disappear. Basically what I found the response curve to be is an estimated 50% reduction of "severity-symptoms". By 8mg most of the symptoms were gone. At 28.8 mg they are all gone. With potassium, I took 300mg each several hours until my stomach unlocked, that being the only potassium symptom I get now, along with increased BP. With copper I titrated by 2.5mg a day until the last one didn't make a noticable increase in rate of improvement........

Re the DQ, do you subscribe to the "filling the tank" theory? I.e. that one titrates up & up till one hits one's useful ceiling; then after a while (commonly many months) at that maximally useful dose, one's tank is full - whereupon you can bring your doses down again, without untoward effects?

There are no tanks. However, there are "parking places" for AdoCbl and after reaching equilibrium, I found that I can take that once per week to 1 per month without noticing any difference. Two months makes a noticeable difference. Potassium decreases slow as any given tissue completes healing.

However, A and D are fat soluble and too much can be a problem. Mine is measured each 3 months or so and I am at about 66% percentile on 5000 iu a day.

Thanks again @Freddd. Nice & clear now.

So in lieu of the "filling the tank" metaphor, you'd just say that deficiencies of folate & B12 take months or more of constant dosing to rectify?

Nothing budges my psoriasis - just about my oldest symptom - even now everything else is healing well. I wonder if a trial of higher-dose m-folate might be worth a shot for that? (Currently I'm on 7.2 mg/day.)

Most of my other symptoms are gone or 80% gone. I don't have new pathologies appearing, or old ones reappearing. To me that's suggested I'm okay on my 7.2mg/day. But maybe I'm wrong? Could perhaps the remaining 20% also be budged by upping the folate?

If so, by how much? And do I up B12 & AdoCbl as well?

Being sick is kind of spectacularly awful, whilst being well (our evolutionary norm) feels unremarkable. You may get less gratitude than you deserve because of that. Nonetheless I try to remember how bad I was just earlier this year. At times I never thought I'd make it with the FP - but I'm doing well now.