B-12 - The Hidden Story

[suraj]

I looked quickly for Freddd's experience with this. His solution seems to be go back to the basics of folate, MeCbl and then AdoCbl.



If you go to his post, you can read the rest of his symptom list

Hi @CCC

Thanks for the immediate support. i did push folate to 60mg & b12 to 10mg and felt little better. but still a long way to go. Thanks once again for stepping in and guiding.

 

[Santilion]

I've been on Freddd's B12 protocol for about one month and I'm a bit perplexed. I've had me/cfs for about 9 months and my illness has been progressive; slowly building up during the months. It can still be regarded as mild and I'm able to work full time, but my occupation is far from mentally and physically demanding. I suffer mostly from PEM, lack of energy and mental fogginess.

I take all the vitamins for basic healing such as "Jarrow Methyl B12", "Source Naturals Dibencozide B12" (sublingually for 30+ minutes) and "Solgar Folate".
I started the protocol on a rather low dose (1500 mcg of Methyl B12, (approximately) 1500 mcg Dibencozide and 400 mcgs Folate evenly split each day". I also take the recommended (by Freddd) amounts of B-complex, vitamin C, D and E, potassium, kalcium, magnesium, l-carnitine and omega 3.

There was never any talk about potassium deficiency or methyltrap as far as I could determine. I felt a moderately painful headache upon taking the B12s but it wore off quickly and only returned each time I increased the dosage. It was fairly evident the B12 were the sole reason behind the headaches. I have also felt, during this month, that my aggressiveness and bitterness have increased quite radically. My libido has been increasing as well. My PEM, energy levels and mindfog remain unchanged. I haven't felt that "mental clarity" I've been reading about.

My dosage at the moment is: 7500 mcg Methyl B12 and Dibencozide and 1200 mcg Folate split on three occasions each day. I haven't felt any B12 related symptoms for a while now and even when I miss the potassium the symptoms never seem to worsen. It feels like I've hit a plateau and I'm uncertain what my next step should be. Perhaps I've increased the dosage too fast or maybe I'm taking the B12 incorrectly.

Since my condition is mild I never expected to experience the dramatic "detox-like" symptoms experienced by people here that's been suffering with a severe case of me/cfs for years. I hope the explaination for my lack of symptoms really is that easily explained, but I still fear I'm missing something about this protocol.

Perhaps my confusion is exaggerated, but it would be interesting to know if your experiences corresponds to mine in some way.

 

[suraj]

@Santilion Could you mention what form /quantity of l-Carnitine are u taking. Freddd says the L-Carnitine Fumarate is the best and some people need ALCAR or both ( like myself). After successfully adding LCF - then Add ALA- only then you will watch the fun.. improvements.
Also i see Folate to B12 ratio is not that balanced. Freddd says you need good high doses of Folate. and my personal opinion is up ur folate.

My Personal opinion. Check your self for heavy metal toxicity like Mercury from Amalgam fillings.

 

[dynamis]

I've been on Freddd's B12 protocol for about one month and I'm a bit perplexed. I've had me/cfs for about 9 months and my illness has been progressive; slowly building up during the months. It can still be regarded as mild and I'm able to work full time, but my occupation is far from mentally and physically demanding. I suffer mostly from PEM, lack of energy and mental fogginess.

I take all the vitamins for basic healing such as "Jarrow Methyl B12", "Source Naturals Dibencozide B12" (sublingually for 30+ minutes) and "Solgar Folate".
I started the protocol on a rather low dose (1500 mcg of Methyl B12, (approximately) 1500 mcg Dibencozide and 400 mcgs Folate evenly split each day". I also take the recommended (by Freddd) amounts of B-complex, vitamin C, D and E, potassium, kalcium, magnesium, l-carnitine and omega 3.

There was never any talk about potassium deficiency or methyltrap as far as I could determine. I felt a moderately painful headache upon taking the B12s but it wore off quickly and only returned each time I increased the dosage. It was fairly evident the B12 were the sole reason behind the headaches. I have also felt, during this month, that my aggressiveness and bitterness have increased quite radically. My libido has been increasing as well. My PEM, energy levels and mindfog remain unchanged. I haven't felt that "mental clarity" I've been reading about.

My dosage at the moment is: 7500 mcg Methyl B12 and Dibencozide and 1200 mcg Folate split on three occasions each day. I haven't felt any B12 related symptoms for a while now and even when I miss the potassium the symptoms never seem to worsen. It feels like I've hit a plateau and I'm uncertain what my next step should be. Perhaps I've increased the dosage too fast or maybe I'm taking the B12 incorrectly.

Since my condition is mild I never expected to experience the dramatic "detox-like" symptoms experienced by people here that's been suffering with a severe case of me/cfs for years. I hope the explaination for my lack of symptoms really is that easily explained, but I still fear I'm missing something about this protocol.

Perhaps my confusion is exaggerated, but it would be interesting to know if your experiences corresponds to mine in some way.

I've been trying Freddd's protocol for over a year, different dosages and stopping altogether then restarting etc. I've gone to 10mg of mB12, 8mg of AdenoB12 and 2000mcg Folate and 1000mg LCF.
What i learned is that i can't handle any carnitine, even in 250 mg dose of L-Carnitine (not even acetyl). Also i found that the best dose for me is 500-1000 mg of mB12 every day and twice a week i take adenoB12 3000mcg. I also take 1000mcg folate every day.
Any more than this and i become irritated, tense and overly feel worse. I'm actually making more progress on smaller doses than on larger ones. It took me a year to learn to go slow and low, because i'm type of guy who like to do everything to the max.

Also, 1200 mg Calcium, 600 mg Magnesium, 30mg Zinc have been a great help. Specially Calcium. But nothing could calm me down if i take any carnitine or large doses of B12.

 

[Santilion]

@Santilion Could you mention what form /quantity of l-Carnitine are u taking. Freddd says the L-Carnitine Fumarate is the best and some people need ALCAR or both ( like myself). After successfully adding LCF - then Add ALA- only then you will watch the fun.. improvements.
Also i see Folate to B12 ratio is not that balanced. Freddd says you need good high doses of Folate. and my personal opinion is up ur folate.

My Personal opinion. Check your self for heavy metal toxicity like Mercury from Amalgam fillings.

I take 500 mg "L-carnitine-L-tartrat" every day. I don't feel anything after taking it. Perhaps http://www.iherb.com/product-review...ine-fumarate-855-mg-180-veggie-caps/4939/?p=1 will work better. It's worth a try.

By ALA you mean alpha lipoic acid?

I've been trying Freddd's protocol for over a year, different dosages and stopping altogether then restarting etc. I've gone to 10mg of mB12, 8mg of AdenoB12 and 2000mcg Folate and 1000mg LCF.
What i learned is that i can't handle any carnitine, even in 250 mg dose of L-Carnitine (not even acetyl). Also i found that the best dose for me is 500-1000 mg of mB12 every day and twice a week i take adenoB12 3000mcg. I also take 1000mcg folate every day.
Any more than this and i become irritated, tense and overly feel worse. I'm actually making more progress on smaller doses than on larger ones. It took me a year to learn to go slow and low, because i'm type of guy who like to do everything to the max.

Also, 1200 mg Calcium, 600 mg Magnesium, 30mg Zinc have been a great help. Specially Calcium. But nothing could calm me down if i take any carnitine or large doses of B12.

I take approximately the same dosages every day of the mentioned minerals. The aggression and irritation is noticeable but not overwhelming. I'm assuming the symptoms I experience is a sign of an activity set in motion thanks to the vitamins. A sign of detox. I understand the process can take time.

I find it hard to manage this protocol. I don't know if I should increase or decrease the dosages and how long time I should stay on each dosage. My body isn't giving me enough signs to go on. If my B12 dosage is too high, shouldn't that lead to more symptoms I wonder.

Thank you both for your input. I will start by increasing the folate and change the l-carnitine, include ALA and look for more signs. If that doesn't work I will start over from the beginning and increase the B12 and folate much slower.

 

[Strawberry]

• Some people are totally incapable of converting these to active forms because they lack the enzyme.

Is there any way of finding out if one has or lacks this enzyme? Sorry if this has been touched on in this thread, but I'm not reading 174 pages to find out! I never had any benefit at all from injectable B12, nor the sublinguals. I have wondered if my liquid had received too much light in the refrigerator. I wrapped it in aluminum foil, but that was after a week of being in bubble wrap... But now the sublinguals do nothing either.

And if it matters to anyone responding to me, my B12 blood levels is now over 1500. Current as of May 2016.

Thanks in advance!

 

[Vanessa_M]

Was anyone else other than Fred cured of their ME/CFS from taking the right B12? I am asking, because a close friend of mine has CFS and she has struggled to find the right B12. She got worse on the one she was trying - but she also has SIBO. Apparently she found an article that explained that B12 can actually increase or worsen a SIBO overgrowth, if taken orally.

 

[CCC]

Was anyone else other than Fred cured of their ME/CFS from taking the right B12? I am asking, because a close friend of mine has CFS and she has struggled to find the right B12. She got worse on the one she was trying - but she also has SIBO. Apparently she found an article that explained that B12 can actually increase or worsen a SIBO overgrowth, if taken orally.

Freddd's suggestion is all sublingual b12, and we prefer the b12 oils. I don't think the little SIBO critters would get a chance at either of them.

 

[smileygirl]

Hello. I'm new here and think this may be what I need. I was ready to get started until I read "fatal". That's a little scary. I read "My understanding of Freddd's protocol" because I had no idea where to start. I am trying to read this thread but I'm only on page 29. It took me hours to get there. Sometimes I have to re-read things three times. It's a lot to take in.

What I want to know is if "My Understanding of Freddd's Protocol LAST UPDATED: 1/22/15" is up to date with the protocol. Are those the latest recommendations?

I have experienced very bad reactions to everything I've ever done so I will be starting extremely slowly. Today I started taking NOW Foods krill oil. I was already taking C&D. Next I will add calcium, magnesium, and NOW Foods Gamma E complex individually. Then zinc at a very low dose and possibly potassium but I don't know if I start the potassium now or wait until I start the B. Last I was going to start taking Jarrow B Right or Pure Encapsulations B Complex Plus or Nature Made Super B Complex. Not sure which is best and it's really hard to figure out what is in them because I order from Amazon and there are different labels from different vendors.

After a week or two on all of the above I was going to try a very small amount of Country Life Dibencozide (adenosylb12) or whatever brand is recommended now. Starting very small and working up to one per day. Then on to the methylb12 Jarrow or Enzymatic therapy starting with a tiny amount. Maintain 1 adb12 daily during all this.
after comfortable on 5mg or more a day of mb12 then add the Solgar Metafolin again, very small amounts.

I plan to go very slow. Want to know if I have the right order and need to know brands.

Is freddd on here still? Will I be able to ask him questions as things happen?

I am full of fear, more so since reading that the potassium situation can be fatal so I need to know if I'll be able to get help here. Don't have a doctor that I can trust or that understands anything other than prescription meds.

Think that is all. Look forward to getting to know some of you. Thank you in advance for helping me out.

Jennifer

 

[smileygirl]

Another question - would it be a good idea to take Betaine HCL? Don't think I digest well. I eat but weigh 98 pounds and have never really been able to gain weight. Have been underweight pretty much all my life.

Jennifer

 

[Jamo77]

@Freddd you mention veggie folates cause problems for you - do you or anyone have a list of veggies that cause problems ??? does one exclude all veggies in our cases? I do notice I pay dearly if I have veggies in terms of energy and function but haven't really documented it. Interested in people's experiences - does the malaise set in a day or 2 days afterward?

Also with this folate donut deficiency that occurs I am interested how quick this occurs and people's experiences. For example I took 8mgs of Thorne 5-mtfh the other morning and felt the best I had in a long time then next day crashed when administered the same dose. How quick have some people ramped their doses from say 2mg's to 30mg's? Does that mean I need to keep increasing dose? If I increase that do I need to increase potassium?? Same with b12s?? Other b vitamins.

one thing I notice I feel ok one day then crash the next and the cycle keeps going? Its like on the crash day there are some repairs going on then the next day am ok.

Also should note I did real well on copper for about a month.

 

[KappaMaki]

one thing I notice I feel ok one day then crash the next and the cycle keeps going? Its like on the crash day there are some repairs going on then the next day am ok.

I'm so glad to see you mention this! I have been on the protocol for about six weeks now, and while the general trajectory is up, I do seem to have a great day followed by a day where my symptoms and general fatigue are much worse.

I am also curious as to whether others have experienced this, and to what they attributed it.

 

[Johnmac]

I'm so glad to see you mention this! I have been on the protocol for about six weeks now, and while the general trajectory is up, I do seem to have a great day followed by a day where my symptoms and general fatigue are much worse.

I am also curious as to whether others have experienced this, and to what they attributed it.

Yes, many times. Don't know the cause. I take the B12 oils now, & lots of B2, & have a smoother ride.

 

[smileygirl]

@Johnmac

did you tititrate B2? How much are you taking now?

Thanks.

 

[Johnmac]

@Johnmac

did you tititrate B2? How much are you taking now?

Thanks.

No, just started with 25mg twice a day, which is still my dose.

I noticed quite an improvement in the effect of the B12 when adding the B2.

 

[outdamnspot]

I was wondering if it's normal to experience an initial worsening with Methyl-b12? I tried it before I became really unwell and could tolerate relatively high doses (4000-5000mcg), albeit with some 'crash' symptoms like more hypoglycemia etc.

Last night, I took 500mcg before dinner and felt a 'crash', which generally manifests as endless, insatiable hunger, fatigue/brain fog and poorer stress tolerance.

When I held the B12 under my lip, I could feel my stomach gurgling and it triggered several BM's.

Today, I woke up and felt really awful -- I have cold 'menthol' burning-like sensations in my chest and limbs (a kind of neuropathy, I believe?), tingling, far worse balance issues and tolerance for standing (normally I can walk around the house without issue, but here I was holding onto things constantly). I also had a lot of bowel eliminations.

I am wondering if the combination of neurological symptoms and bowel stuff is a good sign in a way? My doctor also believes I have a copper toxicity, and am wondering if the B12 might also be eliminating metals.

 

[Nikki7]

I was wondering if it's normal to experience an initial worsening with Methyl-b12? I tried it before I became really unwell and could tolerate relatively high doses (4000-5000mcg), albeit with some 'crash' symptoms like more hypoglycemia etc.

Last night, I took 500mcg before dinner and felt a 'crash', which generally manifests as endless, insatiable hunger, fatigue/brain fog and poorer stress tolerance.

When I held the B12 under my lip, I could feel my stomach gurgling and it triggered several BM's.

Today, I woke up and felt really awful -- I have cold 'menthol' burning-like sensations in my chest and limbs (a kind of neuropathy, I believe?), tingling, far worse balance issues and tolerance for standing (normally I can walk around the house without issue, but here I was holding onto things constantly). I also had a lot of bowel eliminations.

I am wondering if the combination of neurological symptoms and bowel stuff is a good sign in a way? My doctor also believes I have a copper toxicity, and am wondering if the B12 might also be eliminating metals.

I'd like to know this also because I've felt worse starting this. I have symptoms of over methylation. Good question @outdamnspot

 

[Jimbo39]

Hi guys,

Three days ago I hit a wall. I mean really hit it: flu-like symptoms,blurry vision, awful headache, brain dead, gut pain.

I've been doing pretty good with b12 but when I went from 2500 mcg Mb12 to 5000 and 5000 abB12 to 10,000, all hell broke out.

In addition to B12, here is what I'm taking now:

Folate 5,000 mg
Niacin 4,000 mg
Potassium 1,200 mg
Magnesium 1,000 mg
Calcium 700 mg
Seeking Health Trace Minerals Complex x2
Pure Encapulations B-Complex x2

Adding 10,000 mg folate seemed to pull me out of my spiral but I'm still far from baseline.

I have not added LCF. I wonder if I'm deadlocked there? I don't even know what LCF is supposed to do.

Any insight or guesses would be appreciated.

 

[Johnmac]

Hi guys,

Three days ago I hit a wall. I mean really hit it: flu-like symptoms,blurry vision, awful headache, brain dead, gut pain.

I've been doing pretty good with b12 but when I went from 2500 mcg Mb12 to 5000 and 5000 abB12 to 10,000, all hell broke out.

In addition to B12, here is what I'm taking now:

Folate 5,000 mg
Niacin 4,000 mg
Potassium 1,200 mg
Magnesium 1,000 mg
Calcium 700 mg
Seeking Health Trace Minerals Complex x2
Pure Encapulations B-Complex x2

Adding 10,000 mg folate seemed to pull me out of my spiral but I'm still far from baseline.

I have not added LCF. I wonder if I'm deadlocked there? I don't even know what LCF is supposed to do.

Any insight or guesses would be appreciated.

They are all clear histamine symptoms, so histamine intolerance or high histamine levels are one possibility. I have had histamine attacks since getting my B12 levels higher - don't know why.

 

[Jimbo39]

@John Mac I never thought of that but it makes sense. I assumed it was causing a detox or die off and hence the flu like symptoms. Have you found anything useful for your histamine attacks? Would they affect the gut?