B-12 - The Hidden Story

[Johnmac]

The carnitine anxiety can be got around (according to Fred) by using liquid carnitine, & titrating up slowly.

That works for me.

 

[suraj]

Could you or someone answer a question about weight gain. My family is following Freddd's protocol and we are gaining weight. We can tell it's edema but 7,000 mcg of Solgar folate every 3 hours is not reducing the weight or edema? We were taking Acetyl Carnitine (which worked better for us) but had to stop due to anxiety and increased heart rate. We are taking 5 mg of magnesium per lb. and all the correct brands/cofactors including B complex that doesn't exceed the levels in B1 B2 and B3 plus taking the other 3 deadlock quartet.
What could be causing this or are we missing something? We've been on the protocol for 6 months.
Thanks

Quick reference to Fredds msg.. http://howirecovered.com/active-b12-therapy-faq/

"After adding in the adb12, the mb12 and things have stabilized, add in the methylfolate. After that has stabilized add the l-carnitine fumarate. That can have a much larger effect than the adb12 on energy generation. Actually whichever of that pair is added second is usually the most energetic. If the carnitine/adb12 pair is very energetic you may find that the TMG and smooth that out and make it more comfortable."


I’ve been producing swamp-smelling urine since I began Freddd’s protocol. Is it the result of some sort of
detox, or just one of the supplements itself that causes it?

I can tell you what started for me. It lasted for about 10 days and was gone by the time I got into my doctor at a hastily
made appointment. It started about 4 hours after I started L-carnitine fumarate. That first day I dumped about 4
pounds of excess water. My stomach was swollen taut and hard like a basketball. My breathing was impaired and
breathing while reclining was very difficult. By the time the smell returned to normal I had dumped 20 pounds of water
and my stomach was soft.

 

[Freddd]

Could you or someone answer a question about weight gain. My family is following Freddd's protocol and we are gaining weight. We can tell it's edema but 7,000 mcg of Solgar folate every 3 hours is not reducing the weight or edema? We were taking Acetyl Carnitine (which worked better for us) but had to stop due to anxiety and increased heart rate. We are taking 5 mg of magnesium per lb. and all the correct brands/cofactors including B complex that doesn't exceed the levels in B1 B2 and B3 plus taking the other 3 deadlock quartet.
What could be causing this or are we missing something? We've been on the protocol for 6 months.
Thanks

Hi Predw,

Honestly I don't know what is causing your edema. For me it was a combination of two things, both parts of the multi organ breakdown of excess MMA; kidney damage and cardio muscle damage as well as blocked methylation damage. I would be more inclined to say it was caused by the damage caused by mitochondrial damage from lack of sufficient carnitine and AdoCbl and methyltrap which is to say blocked methylation by expulsion of methylfolate from cells caused by lack of MeCbl when it is needed. Kidneys are a specialized epithelial tissue. It took 2 years after AdoCbl and l-methylfolate reach about 4 mg daily that I started dumping water the first time, -45 pounds in 30 days and at first it stank like swamp water. Then about 2 years later, I started L-carnitine fumarate, and I had to start at 1/4 of a 250mg capsule because it hit me hard and fast and was absolutely exhilarating. My aerobic exercise time on my Nordic Track doubled the next day. After a short while the water started pouring off at 45 pounds in a month but no swamp water this time. My thigh muscles at the top of my thigh were the thickness of my thumb. About the time the water finished pouring off I started putting on muscle all over my body with moderate exercise. My blood pressure was at 112/70 and 107/75 the past two visits, never used to be that way and I couldn't breath easily either back then. I also lost 40 pounds of fat as I put on the muscle without changing my diet. With the regrown muscle my body composition has changed. Before, all my life up to 5 or so years ago, I could float holding still upright and have my mouth out of the water. Since then I sink with my lungs half full and can barely float with full lungs.

Since the eGFR percentage was generated on blood tests estimating kidney effectiveness and grades of kidney disease, this number of mine has come up from borderline 2-3 to borderline stage 2-1. My kidneys work better. My heart works better I have had the most kidney improvement in the last six months when my folate was upped from about 21 mg to 24 mg to 28.8 mg.

As regarding the l-caritine, "anxiety" was indicating it was working. People have found that they can titrate holding the dose just below anxiety and increase it regularly, different rates for different people, and be done with the anxiety response after a while. That allows it to do the ATP generation eventually getting enough for all the cells that need it. Smaller more frequent doses, say 3 a day, hold moods more level and increases resistance to the anxiety, maybe by undoing the damage in the brain and in muscles and anywhere cells need energy and to be made. Very important. It is needed to help the healing that allowed my edema to be eliminated. If you have had muscle atrophy, as I did, I gained weight gaining muscle, 50 pounds, and eliminated fat at near the same rate. Getting the mitochondria working appears to help get all sorts of things going.

 

[Nikki7]

Freddd, I think I was on page 100 before and somehow missed your posts. I'm interested to see that for you, and in at least some research, methylB12 and methylfolate are the big players in digestive issues. I'll be interested to see if my own gut issues straighten out over time. If I'm "healing backwards", it would make sense that the gut issues might be up front for me, because I've only had serious problems for the last year or so.

Lena, my own gut got better on this protocol, but only after something like 6 weeks to 2 months of constant nausea in with other bad crashiness. I didn't even have anything as severe as Freddd's disgestive problems, and yours sound severe to me as well; I originally started out with a cast-iron gut. Now my gut has healed some, I'm amazed at how much more present I am and I'm wondering too if this wasn't part of my lessening brain fog. I hadn't realized how much energy it takes to be nauseated all the time, and how it kind of puts a cloud of wooziness between you and your daily activities.

@lena
If you're still out there, can you update me on gut issues? I have severe ones (have trouble moving food, acid reflux, food allergies) and have recently started Freddd's protocol. I'm on 3-4000mcg methylcobalamin and much less 5mthf...wondering what my ratios of b12 to methylcobalamin should be. Any advice would be greatly appreciated as to what cofactors help most. I'm taking fish oil, zinc, multivitamin. Thanks so much!

 

[Jamo77]

Have been on the protocol for a few weeks.

Most of my adult life I have suffered from fatigue. After some huge stress in my life in 2001 and then surgery my entire body seemed to collapse further the following were/are my symptoms following these events:

- lose balance when walking
- burning mouth and eyes
- fatigue
- couldn't stand on one foot in the Tai chi exercises I use to do
- sensitivity to light
- post nasal drip (thick mucous) and allergies
- dizziness
- mcs
- complete blunting of emotion (flat affect)
- inability to think deliberately
- sore throat
- ringing ears
- bad memory
- in recent years buzzing and tingling of the nervous system
- irritable bowels
- hands seemed to have pink dots
- shaky personality
- low libido
- dead look in eyes
- shortness breath
- the feeling of having lost my soul so to speak
- also nerve damage from nasal surgery where the sneezing nerve was impacted.
- stiff neck buzzing back of head

The upshot of this I lost my family in 2009, my house, my well paying job and eventually was even living in a tent for a bit. Constant ridicule from a family of hard workers/achievers doesn't help. In recent years I have had the opportunity for a couple of beautiful relationships with women I completely adored but once again CFS set in and a general level of pain derailed things not to mention my loss of personality that I used to have. My thoughts started to become increasingly dark especially the non ability to feel any normal emotion coupled with the total inability to cry - this to me is akin to losing ones essential humanity. Living a life with no emotion and just a wired and tired tingly existence - hellish. Constantly living in fear as even with a basic job now often I can feel huge crashes coming on and there is no stability of when one is going to feel normal it is total carnage. Everyone on here has lived through this type of stuff.

Started the FP recently and the first 3 weeks was on fire for the first time in my life I had meaningful sustained energy. I started it because i had a b12 jab 2 years ago and it was like being on speed (well to be honest havent done drugs but I did some tasks with ease) but subsequent jabs failed to have the same effect. I read freddd talking about this. I now understand why i have always felt like life was impossible. The first 3 weeks on FP I would wake jumping out of bed with energy something I hadn't had since being a young child. Normally I feel more devastated waking up than the night before. Sometimes now I even have feeling in my legs like i am reconnecting to my body and not just bad electrical buzzing/tingling. Brightening of the mind a beautiful thing. My sneezing nerve seems to be carrying more sensation helping me sneeze better and I get some pleasant tinglings afterward. I don't think I will ever regain that feeling of my soul like I had before 2001 but I do think I can have a life very well worth living on the protocol assuming the energy gains are stable enough. Hopefully I can start to cry soon.

However the past week and a bit there have been days with crashes again. Anyhow fear has been setting in as I didn't want to lose what I was starting to have - it would be like losing my entire existence I told the big bloke upstairs I have come to the end of my tether and will not accept anymore false hopes. I will start experimenting with smaller doses of LCF as I was popping an entire Drs Best 855mg or not taking it at all. At first i seemed to be successful with a haphazard approach but now i am guessing i must have some precision with my dosages. Fingers crossed going forward and thanks to @Freddd for the heart and soul he has put in. Reading his story I get the sense of a genuine man of steel to have not given up.

 

[ahmo]

@Jamo77 You might find some help in this post from JohnMac. Sometimes there are regressions, and then more progress. good luck. There are also emotional support sections at pr, see the forum front page.

 

[Jamo77]

Thanks Ahmo, I am a fellow Aussie (sandgroper) I have been reading your insightful posts and am giving serious thought to your metal detox protocol following removal in 2008 of 8 amalgams I had. I am trying these things for the reason you noted somewhere that is to be still, calm and once again enjoy the little things in life be it nature, colours, connections to people etc.

 

[Jamo77]

Have been getting strong effect by taking the potassium about an hr before the methyl b12 the past few days. It is weird half a day will have complete calm and stillness of mind then will experience the feeling of being wired like plugged into 120v with severe sinus pain especially where I was operated on. Even though all sorts of nerve pains are present and being amplified by the protocol the stillness of mind when it is taking place is something completely foreign to me. I even feel myself more present. I remember reading a person relating when b12 deficiency strikes them it is like being at the bottom of a swimming pool looking up everything is murky and muted thats how I feel. Sometimes I felt like I was about to completely lose my vision. When the FP is good it is like a night and day difference type scenario. I expect the next few months to be rocky but stabilization is key.

 

[Nikki7]

This morning I upped my adenocobalamin by 1mg at most and have been on 300mcg l carnitine fumerate for a few days...I feel super swollen...this may be nerves but also edema? My clothes aren't fitting now! Anyone have issues with water weight? How do you regulate it? I'm also more emotional than usual. I've been taking more potassium to try and help. Anything else I should do?

 

[prekdw]

This morning I upped my adenocobalamin by 1mg at most and have been on 300mcg l carnitine fumerate for a few days...I feel super swollen...this may be nerves but also edema? My clothes aren't fitting now! Anyone have issues with water weight? How do you regulate it? I'm also more emotional than usual. I've been taking more potassium to try and help. Anything else I should do?

Hello Nikki7,
I am on Freddd's protocol and have suffered the water weight gain/edema off and on. I noticed several things helped me.
First, I would recommend you purchase an Omron wrist blood pressure machine ($48) or any of the Omron blood pressure devices at your local CVS/Walgreens so you're not trying to guess what's going on in your body. We found the blood pressure to be the greatest way to regulate edema. If your blood pressure is under 115 systolic, we drink several 8 ounce glasses of water and recheck the blood pressure in 1 hour. You can also add a little salt to your water and see if that helps. I found I felt the best when my blood pressure was around 120/80 with a pulse between 75-90. I would also recommend you take a diuretic water tablet (over the counter) every 6 hours to help bring down the water weight. It's very likely you don't have enough water in your body and your body is storing water.
Hope this helps.

 

[suraj]

Hi All

I just came across a beautiful article " What the father eats matters to the fetus", thought this is the best forum i should share with. just makes a lot of sense to what we are all going through.

http://www.thehindu.com/sci-tech/what-the-father-eats-matters-to-the-foetus/article8085569.ece

summary

• 1. The importance of Folate before fathering
• 2. importance of protein, DNA, RNA before fathering.

 

[suraj]

Thanks a ton Johnmac , for posting a detail recipe, makes lot of meaning, i will try this and update all in 2-3 weeks.

Thanks a ton @Johnmac , followed the titration, it works perfect and smooth . im dosing hourly 1 drop, it just got me out of a crash.
now i got a hang of managing the dose between anxiety and depression. got energy to think and work too

 

[suraj]

@Johnmac @silverseas2014 @Freddd @ahmo and all.

my current dosage is as below

I make a solution of 750ML with the below and sip it through the day away from folate.

+ 1200 Mg Now Potassium Gluconate
+ 4000 Mg+ of Now Vitamin C ( 1.25 Teaspoon)
+ 5gm of Healthy Origins D-Ribose ( 1 Teaspoon)

apart i take
+7.5 mg x3 times = 22.5 Mg Folate
+ 15 Mg B12( country life) + 4 mg B12 ( Enzymatic Therapy) + 10Mg Source Natural ADb12. = 20mg MB12 +10mg Adb12
+ Thorne IV multi vitamin & mineral
+ Now Vitamin D 10,000IU
+Now E 1-2 tab per day
+ minerals Thorne Citramins
+ Omega 3
+LCF (1:98) 1 drop every hr

Im now feeling pretty stable after adding LCF.

since adding LCF , frequent urge to urination has begun, its more towards the evening, but this suffices with increase in Vitamin C extra 2000mg, is this normal, or any particular reason.

Also is this rht time to add

1. TMG- if yes should i micro titrate this or simply start with jarrow 250 -500mg per day.
2. SAM-e titrate this using liquid SAM-e from Cellfoods, as previously i could not tolerate jarrow or Dr best 200mg Tab.
3. lithium 5mg ( as i understand this helps transport B12 across BBB)
4. amino acids. ( does it really add value) if yes, any particular brand.

 

[Freddd]

@suraj,

I din't find any need to titrate TMG, not the slightest. It smoothed out the LCAR, solid energy without the edgy feeling. I know there have been a variety of reactions to TMG, so I don't know. It is methylation side operations, not the ATP that you appear to be more sensitive to as you are starting very low.

I did the SAM-e first, then the TMG which I think is a better order to see the effects.

For the SAM-e. I don't know. I didn't try it until after I had methylation well started and then it gave just a little additional improvement for a 400mg dose.

I know nothing about lithium.

I've never felt a need to take amino acids. I eat meat and beans and eggs, high quality protein.

 

[Johnmac]

Thanks a ton @Johnmac , followed the titration, it works perfect and smooth . im dosing hourly 1 drop, it just got me out of a crash.
now i got a hang of managing the dose between anxiety and depression. got energy to think and work too

Glad it's working @suraj. My experience is pretty much identical to yours (& exactly what Fred said would happen.)

 

[Johnmac]

Don't want to complicate matters, but those really do stand out as textbook mercury symptoms. Not to say they are for you - but if you look up mercury symptoms you'll find something quite close to your list.

I'm on the FP as well, & it's been a lifesaver. But I also do Cutler heavy metal chelation. That's much slower, but does produce gratifying results over time.

BTW: Look up iodine deficiency & check out the pink dots that produces, to see if they are like yours.

Have been on the protocol for a few weeks.

Most of my adult life I have suffered from fatigue. After some huge stress in my life in 2001 and then surgery my entire body seemed to collapse further the following were/are my symptoms following these events:

- lose balance when walking
- burning mouth and eyes
- fatigue
- couldn't stand on one foot in the Tai chi exercises I use to do
- sensitivity to light
- post nasal drip (thick mucous) and allergies
- dizziness
- mcs
- complete blunting of emotion (flat affect)
- inability to think deliberately
- sore throat
- ringing ears
- bad memory
- in recent years buzzing and tingling of the nervous system
- irritable bowels
- hands seemed to have pink dots
- shaky personality
- low libido
- dead look in eyes
- shortness breath
- the feeling of having lost my soul so to speak
- also nerve damage from nasal surgery where the sneezing nerve was impacted.
- stiff neck buzzing back of head

The upshot of this I lost my family in 2009, my house, my well paying job and eventually was even living in a tent for a bit. Constant ridicule from a family of hard workers/achievers doesn't help. In recent years I have had the opportunity for a couple of beautiful relationships with women I completely adored but once again CFS set in and a general level of pain derailed things not to mention my loss of personality that I used to have. My thoughts started to become increasingly dark especially the non ability to feel any normal emotion coupled with the total inability to cry - this to me is akin to losing ones essential humanity. Living a life with no emotion and just a wired and tired tingly existence - hellish. Constantly living in fear as even with a basic job now often I can feel huge crashes coming on and there is no stability of when one is going to feel normal it is total carnage. Everyone on here has lived through this type of stuff.

Started the FP recently and the first 3 weeks was on fire for the first time in my life I had meaningful sustained energy. I started it because i had a b12 jab 2 years ago and it was like being on speed (well to be honest havent done drugs but I did some tasks with ease) but subsequent jabs failed to have the same effect. I read freddd talking about this. I now understand why i have always felt like life was impossible. The first 3 weeks on FP I would wake jumping out of bed with energy something I hadn't had since being a young child. Normally I feel more devastated waking up than the night before. Sometimes now I even have feeling in my legs like i am reconnecting to my body and not just bad electrical buzzing/tingling. Brightening of the mind a beautiful thing. My sneezing nerve seems to be carrying more sensation helping me sneeze better and I get some pleasant tinglings afterward. I don't think I will ever regain that feeling of my soul like I had before 2001 but I do think I can have a life very well worth living on the protocol assuming the energy gains are stable enough. Hopefully I can start to cry soon.

However the past week and a bit there have been days with crashes again. Anyhow fear has been setting in as I didn't want to lose what I was starting to have - it would be like losing my entire existence I told the big bloke upstairs I have come to the end of my tether and will not accept anymore false hopes. I will start experimenting with smaller doses of LCF as I was popping an entire Drs Best 855mg or not taking it at all. At first i seemed to be successful with a haphazard approach but now i am guessing i must have some precision with my dosages. Fingers crossed going forward and thanks to @Freddd for the heart and soul he has put in. Reading his story I get the sense of a genuine man of steel to have not given up.

 

[suraj]

@suraj,


I din't find any need to titrate TMG, not the slightest. It smoothed out the LCAR, solid energy without the edgy feeling. I know there have been a variety of reactions to TMG, so I don't know. It is methylation side operations, not the ATP that you appear to be more sensitive to as you are starting very low.


I did the SAM-e first, then the TMG which I think is a better order to see the effects.


For the SAM-e. I don't know. I didn't try it until after I had methylation well started and then it gave just a little additional improvement for a 400mg dose.



I know nothing about lithium.

I've never felt a need to take amino acids. I eat meat and beans and eggs, high quality protein.

@Freddd Thank you for the details .

i just hope i see stable progress while titrating LCF, and no surprise crashes.

it was my bad, i had tried SAM-e before titrating LCF and crashed, i will now titrate SAM-e along with LCF and keep u all posted of it.

im currenty skinny body type. i was a vegetarian most of my life, i now have meat 1's a week. and 1 egg daily. trying to also increase the intake of protein. so i was exploring options.

thanks you once again, i will update my results once i implement.

 

[suraj]

Glad it's working @suraj. My experience is pretty much identical to yours (& exactly what Fred said would happen.)

@Johnmac @Freddd now that, its 4+ months into FP, i had throttled up to B12 (20mg) + folate (23mg) in the first 4-6 weeks ( & it was a honeymoon period), but had crashed since then for various reasons like ( no LCF or too high dose of LCF or abruptly added SAM-e).

now that im doing good, titrating LCF with precision, would you like to worn me of any pit falls ahead, or should i see only positive days ahead.

just too scared of crashes and awful startup.

 

[Johnmac]

I'm flattered that you asked Fred & me in the same breath. But he's the expert round here: I flail in his wake.

The FP has basically been great for me.

LCF can be a right MTHFR, and I don't mean methylenetetrahydrofolate reductase (NAD(P)H. Like you, I am sensitive to LCF - way more than you, I think, as I can't take it at all - I gather because the dosages in capsules are too big. On Fred's advice I had to switch to liquid carnitine, which I can titrate up slowly from tiny dosages. (Now on 4 mg after several months.)

My most recent augmentations have been:

* Switching from sublingual to transdermal, via the world famous @ahmo method (patent pending): grind the B12 & folate pills up, mix them with oil, and bandage them against your body. (She uses wristbands; I use elastoplasts. More sophisticated operators use commercial oils: tho folate oils are hard to come by, & the Australian guy who makes B12 oils isn't even sure they could work.) That took me from 65% functioning to 75%, & allowed me to cut doses by 1/3. I.e. lower dosage, higher effect.

* Upping my B2 from 10mg to 40mg. That has kicked me from 75% functioning to about 90%, at least for the week since I began it.

I don't know what's going on with the B2; but my experiment suggests, to me at least, that transdermal methy-folate works, & that transdermal methylfolate, methyl B12 & adenosyl B12 achieves more penetration than the other methods.

Good luck...

@Johnmac @Freddd now that, its 4+ months into FP, i had throttled up to B12 (20mg) + folate (23mg) in the first 4-6 weeks ( & it was a honeymoon period), but had crashed since then for various reasons like ( no LCF or too high dose of LCF or abruptly added SAM-e).

now that im doing good, titrating LCF with precision, would you like to worn me of any pit falls ahead, or should i see only positive days ahead.

just too scared of crashes and awful startup.

 

[suraj]

Thanks @Johnmac for the reply , i address and look up to you for your valuable inputs, since we are similar- in response to LCF, so i may be able to learn from your pitfalls if any. No doubt @Freddd is master for all of us here.

My two cents idea. may be you could evaluate, if it makes meaning, i did try to use a oil ( only B12 , not folate as it does not have BBB issue) in the center of head. which could trans-dermal seep into the head (CSF penetration similar to intraventricular). i dint do a sustained trial to declare the result. i will try again once im stable on LCF after a few months..

Thanks once again..

I'm flattered that you asked Fred & me in the same breath. But he's the expert round here: I flail in his wake.

The FP has basically been great for me.

LCF can be a right MTHFR, and I don't mean methylenetetrahydrofolate reductase (NAD(P)H. Like you, I am sensitive to LCF - way more than you, I think, as I can't take it at all - I gather because the dosages in capsules are too big. On Fred's advice I had to switch to liquid carnitine, which I can titrate up slowly from tiny dosages. (Now on 4 mg after several months.)

My most recent augmentations have been:

* Switching from sublingual to transdermal, via the world famous @ahmo method (patent pending): grind the B12 & folate pills up, mix them with oil, and bandage them against your body. (She uses wristbands; I use elastoplasts. More sophisticated operators use commercial oils: tho folate oils are hard to come by, & the Australian guy who makes B12 oils isn't even sure they could work.) That took me from 65% functioning to 75%, & allowed me to cut doses by 1/3. I.e. lower dosage, higher effect.

* Upping my B2 from 10mg to 40mg. That has kicked me from 75% functioning to about 90%, at least for the week since I began it.

I don't know what's going on with the B2; but my experiment suggests, to me at least, that transdermal methy-folate works, & that transdermal methylfolate, methyl B12 & adenosyl B12 achieves more penetration than the other methods.

Good luck...