B-12 - The Hidden Story

[aquariusgirl]

liquidsky: yes, several of us who started rich's simplified protocol back before PR and before Fredd began posting here.. ran into problems with methylation support causing intensification of inflammation.
Most of those people have quit the protocol, or suspended it while they attack pathogens, or are trying other things to combat inflammation.
Prof Richard Deth was just lecturing today at Autism ONe about the damaging effects of chronic oxidative stress on the brain. it's no trivial thing.
Thing is I don't know if the intensificiation of inflammation we are experiencing affects the brain as well as the body.
Personally, I decided it wasn't smart to tough it out.. but it's a trade off.. my brain doesn't really function w/out b12 and folate.. ..so I actually took low doses of both today.
(think i just contradicted myself there..,so clarification.. I tried to quit..but occasionally i take low dose b12 and folate occasionally because I find it hard to function without it.)
Sorry. Clear as mud, right?

Plus, and it would be great if Rich could comment on this, I assume that if we have partial methylation blocks, we are accumulating DNA damage the whole time we are not treating it.

Everything is a trade off.

 

[Freddd]

liquidsky: yes, several of us who started rich's simplified protocol back before PR and before Fredd began posting here.. ran into problems with methylation support causing intensification of inflammation.
Most of those people have quit the protocol, or suspended it while they attack pathogens, or are trying other things to combat inflammation.
Prof Richard Deth was just lecturing today at Autism ONe about the damaging effects of chronic oxidative stress on the brain. it's no trivial thing.
Thing is I don't know if the intensificiation of inflammation we are experiencing affects the brain as well as the body.
Personally, I decided it wasn't smart to tough it out.. but it's a trade off.. my brain doesn't really function w/out b12 and folate.. ..so I actually took low doses of both today.
(think i just contradicted myself there..,so clarification.. I tried to quit..but occasionally i take low dose b12 and folate occasionally because I find it hard to function without it.)
Sorry. Clear as mud, right?

Plus, and it would be great if Rich could comment on this, I assume that if we have partial methylation blocks, we are accumulating DNA damage the whole time we are not treating it.

Everything is a trade off.

Hi Aquariusgirl,

Any of the induced folate deficiencies, whether from NAC, Glutathione, folic acid, folinic acid or even food folate (such as myself) causes a sizable increase in inflammation. The only thing that I have found that reverses it is the Metafolin. If the methylation cycle is successfully started than potassium can plunge. Have you accounted for all of these things?

 

[maddietod]

aquarius, how do you know you have inflammation issues? Meaning, how does anyone know?

 

[Freddd]

aquarius, how do you know you have inflammation issues? Meaning, how does anyone know?

Hi Madie,

how does anyone know?

I took 2400mg of ibuprofen daily for a couple of decades. Before that I had mentioned to my doc that I could use a number 3 codeine with aspirin and that it worked as well as a #4 APAP with codeine It helped with the inflammation and pain from inflammation. In the 9 months after mb12 was started the ibuprofen no longer made any difference if I took it or didn't. All the pain it worked on was gone. My CRP, when measured dropped to the lowest point on the scale. WHen I took glutathione precursors my inflammation based pains went out of sight again and once again aspirin or ibuprofen helped a lot. And again when glutathione precursors were discontinued, the inflammatory pains faded quickly after starting Metafolin and once again the ibuprofen or aspirin made no difference.

 

[Rockt]

I started taking AOR Advanced B-Complex about 10 days ago and it makes me very tired and not great feeling. However, I seem to be sleeping a bit better at night and I fall asleep quite quickly because I'm so tired. I was taking it at noon, but have switched to after dinner. Still get overly tired and feel crappier at night. I was wondering if it is OK to take at bedtime - might help sleep further and I won't notice the crappy feeling.

 

[Red04]

You can click on my username and read my wifes story. I just wanted to let everyone know that she has been training for a sprint triathalon (5k run/500M swim/15 mile ride) for about 2 months. The race is in two weeks and she is more than prepared. For practice and on different days, she runs 8k, swims 1000M and bikes well over an hour.

Amazing turnaround from what felt like a death sentence only 6 months ago.

Thanks Freddd!

My wife completed her triathlon on may 7th. She did very well and finished about middle of the pack with an inferior bike.

Bad news is that she seems to have crashed. She took some time off from exercising after intense training for the race. Then started some light jogging after a week off.

On Sunday, she started feeling depressed and was crying for no reason. Monday she was fatigued and some nausea returned tuesday. Her appetite is gone and she is depressed and fatigued. Some slight muscle pain has also started up.

She has been pretty good on the protocol. She missed saturday, Sunday, and Monday. However, she has missed more than that before with no effect and leading up to that missed very few times.

Any advice would be appreciated. I can't think of anything that would have triggered this.

 

[Freddd]

My wife completed her triathlon on may 7th. She did very well and finished about middle of the pack with an inferior bike.

Bad news is that she seems to have crashed. She took some time off from exercising after intense training for the race. Then started some light jogging after a week off.

On Sunday, she started feeling depressed and was crying for no reason. Monday she was fatigued and some nausea returned tuesday. Her appetite is gone and she is depressed and fatigued. Some slight muscle pain has also started up.

She has been pretty good on the protocol. She missed saturday, Sunday, and Monday. However, she has missed more than that before with no effect and leading up to that missed very few times.

Any advice would be appreciated. I can't think of anything that would have triggered this.

Hi Red04,

She does seem to have crashed. So let's look and speculate on what could do it. First, we start with mb12. After three days without, many of us would start to have return of symptoms. "Start" is the operative word here. I've never heard of it hitting that hard and fast. But it could contribute. Another thing that could account for for those symptoms is low methylfolate, especially if it was very marginal to begin with for some reason. It can hit that hard and fast but usually doesn't, but it could contribute to some degree or another. Another possibility is low potassium. It often does hit this hard and fast, especially when marginal to begin with.

She may still be repairing the physical damage of the triathlon. That would put a strain on potassium. Then there are all the unknowns. Was she taking folic acid or folinic acid. Are you aware of paradoxical folate deficiency which has come up in the last 6 weeks. Sometimes it takes a while to occur for unknown reasons. For some people it is quite intermittent for reasons unknown. Folic acid has a longer serum halflife than methylfolate. That could cause the sudden onset of the deficiency as the level of methylfolate fell off faster than folic acid (speculation).

Or of course there could be other unknown factors. I have to tell you that this is more or less how each factor has been found, somebody crashes and identifies what reverses it. Your wife's situation is complicated by having stopped the supplements. The last time she crashed she had substituted the multivitamin for the separates and it wasn't adequate in one or more things. So the first thing to do is try about 600mg of potassium, maybe as 2 tablets at a time with a glass of water each 15 minutes. If it is potassium, changes will occur likely within an hour. The next thing to do is restart the protocol and get rid of those supplements with folic or folininc acid in them substituting others as discussed elsewhere and Metafolin to supply the folate with a larger dose of methylfolate than prior.

Could she have started whey, NAC and or glutathione?

 

[Red04]

Thanks for the quick reply. I wouldn't know where else to turn if it wasn't for this place.

"Was she taking folic acid or folinic acid."

I am not up to speed on all the folic/folinic acid issues. I will be reading up later today. My wife was taking the B-right complex with folic acid and solgar metafolin. We are following the protocol down to every brand and supplement as far as I know.

EDIT: I read the 20 page thread about folic/folinic acid. B-right complex and the country life adb12 both have folic acid. It looks like there might not be a consensus on what to replace these with. Is this correct? Should I eliminate them and go from there? Did I miss something?

EDIT NUMBER 2: I found where the active b12 basics have been updated. I am on track now with the new supplements. Order has been placed.

"So the first thing to do is try about 600mg of potassium, maybe as 2 tablets at a time with a glass of water each 15 minutes. If it is potassium, changes will occur likely within an hour."

Trying this now. Lets hope it's that easy.

EDIT: wifes response after 6 - 99mg spaced 20 min apart this morning: "but nothing but a bad headache, stomach ache, weird overall feeling & lightheaded. I thought it kicked in b/c about 20 minutes ago I felt a little better, like I was high, but it only last a few seconds & i got dizzy & nauseous, kinda like i was being drained of anything or everything in my body."

"The next thing to do is restart the protocol and get rid of those supplements with folic or folininc acid in them substituting others as discussed elsewhere and Metafolin to supply the folate with a larger dose of methylfolate than prior."

Again, is the B-right the only source of folic acid? If so, what should I substitute for B-right? I haven't had a chance to read up on this. Forgive me if its all over the first page of the forum.

EDIT NUMBER 2: I found the info I needed with the update "active b12 basics thread". Ordered the source natural adb12 and b-complex without folic acid.

"Could she have started whey, NAC and or glutathione?"

About 99.9% no. Unless it was hidden in some everyday food.

 

[Freddd]

Thanks for the quick reply. I wouldn't know where else to turn if it wasn't for this place.

"Was she taking folic acid or folinic acid."

I am not up to speed on all the folic/folinic acid issues. I will be reading up later today. My wife was taking the B-right complex with folic acid and solgar metafolin. We are following the protocol down to every brand and supplement as far as I know.

EDIT: I read the 20 page thread about folic/folinic acid. B-right complex and the country life adb12 both have folic acid. It looks like there might not be a consensus on what to replace these with. Is this correct? Should I eliminate them and go from there? Did I miss something?

EDIT NUMBER 2: I found where the active b12 basics have been updated. I am on track now with the new supplements. Order has been placed.

"So the first thing to do is try about 600mg of potassium, maybe as 2 tablets at a time with a glass of water each 15 minutes. If it is potassium, changes will occur likely within an hour."

Trying this now. Lets hope it's that easy.

EDIT: wifes response after 6 - 99mg spaced 20 min apart this morning: "but nothing but a bad headache, stomach ache, weird overall feeling & lightheaded. I thought it kicked in b/c about 20 minutes ago I felt a little better, like I was high, but it only last a few seconds & i got dizzy & nauseous, kinda like i was being drained of anything or everything in my body."

"The next thing to do is restart the protocol and get rid of those supplements with folic or folininc acid in them substituting others as discussed elsewhere and Metafolin to supply the folate with a larger dose of methylfolate than prior."

Again, is the B-right the only source of folic acid? If so, what should I substitute for B-right? I haven't had a chance to read up on this. Forgive me if its all over the first page of the forum.

EDIT NUMBER 2: I found the info I needed with the update "active b12 basics thread". Ordered the source natural adb12 and b-complex without folic acid.

"Could she have started whey, NAC and or glutathione?"

About 99.9% no. Unless it was hidden in some everyday food.

"Could she have started whey, NAC and or glutathione?"

About 99.9% no. Unless it was hidden in some everyday food

It is often hidden in "protein" drink mixes for athletes and various consumer items.


EDIT: wifes response after 6 - 99mg spaced 20 min apart this morning: "but nothing but a bad headache, stomach ache, weird overall feeling & lightheaded. I thought it kicked in b/c about 20 minutes ago I felt a little better, like I was high, but it only last a few seconds & i got dizzy & nauseous, kinda like i was being drained of anything or everything in my body."

So, it is potassium AND something else. That amount of potassium would normally have no effect at all unless low.l

 

[lizw118]

Again, is the B-right the only source of folic acid? If so, what should I substitute for B-right? I haven't had a chance to read up on this. Forgive me if its all over the first page of the forum.

Pure Encapsulations makes a supplement called B6 complex which only has methylfolate and no folic or folinic acid. That's what I take.
Liz

 

[Freddd]

Again, is the B-right the only source of folic acid? If so, what should I substitute for B-right? I haven't had a chance to read up on this. Forgive me if its all over the first page of the forum.

Pure Encapsulations makes a supplement called B6 complex which only has methylfolate and no folic or folinic acid. That's what I take.
Liz

Hi Liz,

Country Life Dibencozide also contains folic acid. Many multi-supplements also do. It is also in a lot of food items.

 

[h4house]

BioCare do a B Complex without any B12 or Folic acid in it. It is called B-Plex. Don't know if it is available in the USA, I'm in the UK.

 

[Red04]

Freddd! Welcome back.

My wife has been on your protocol since October and she has been doing great.

She is off ALL medications. Sleeping well, no teeth grinding, emotions generally better, severe fatigue gone. She is pretty much back to her normal self. She still likes to sleep a lot, has some digestion issues (although reduced significantly) and is tired quite frequently.

She had pretty much peaked around the beginning of December. We added the last co-factor, alpha lipoic acid and saw no results.

My wife never really was positive it was the protocol that was the reason for the improvement she saw and she was having trouble with (bitching about) the shear number of supplements and she would skip taking them altogether. She was taking them less than half the time, but still felt about the same and pretty stable.

In order to lessen the number of supplements, I replaced A,D,E,C,calcium, mag,potassium, and zinc with a multivitamin. She took a full weeks worth of multivitamin, TMG, SAMe, L_carnitine fumarate, adb12, and mb12.

Along with changing to a multivitamin, she began exercising. I think she worked her way up to ~20 minutes of running/cardio in about a week.

She has had a pretty significant "crash". She is very restless in her sleep, severe fatigue, muscle pain, she is back to going to sleep at 6pm. This all happened in a very short time, since about saturday she has felt like this and it has gotten worse.

Last night, I re-configured her vitamins back to the individual supplements to see if that was the problem. Do you think the "crash" could be from the multivitamin or is it from the exercising?

Thanks in advance.

I just looked at the multivitamin my wife was on for a week before this crash in January and it has 400mg of folic acid. I was reviewing everything today and thought it might be useful info.

 

[Adster]

Thorne Research have a heap of different B-Complexes now, available at iherb. I've just got this one http://www.thorne.com/Products/Vitamins/prd~B104.jsp which has folinic, methylfolate, mB12 and Adb12.

 

[Sasha]

I'm joining this thread about 2,000 posts in so apologies if this has been asked but I listened to a recent talk online by Dr Bell, who said he gets his patients to take 3,000 micrograms of B12 a day indefinitely and sees about a 10-20% improvement in about 30-40% of patients.

I'm wondering if anyone knows what form of B12 he uses?

 

[Sasha]

I moved Freddd's spectacular post on B-12 from the story section to here in order to focus on it more fully. Many, many people try B12 for ME/CFS but few are cured. Freddd was actually cured when he stumbled upon the right type of B12 for him.

Freddd's story sounds very interesting! Can anyone provide a link to it?

 

[Sasha]

I've read the first 120 posts in the thread, only 1,800 to go...

Have there been developments in the protocol or is it still as it was in 2009?

 

[richvank]

I've read the first 120 posts in the thread, only 1,800 to go...

Have there been developments in the protocol or is it still as it was in 2009?

Hi, Sasha.

Freddd and I have both modified our suggested protocols since 2009. I'll let Freddd update you on his protocol. The latest version of the one I've suggested is pasted below.

Best regards,

Rich


March 30. 2011

SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROMEMarch 30, 2011 Revision
Rich Van Konynenburg. Ph.D.
(Based on the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. General Vitamin Neurological Health Formula [2]: Start with tablet and increase dosage as tolerated to 2 tablets daily
2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
3. MethylMate B [4]: 3 drops under the tongue daily
4. Folinic acid [5]: capsule daily
5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

All these supplements can be obtained from http://www.holisticheal.com.
The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
For those allergic to soy, lecithin from other sources is available.
GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

[1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
[2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
[4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
[5] Folinic acid is 5-formyltetrahydrofolate. capsule is a dosage of 200 mcg.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
[7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.

 

[Rockt]

At different points Freddd has recommended what I believe he termed "penetrative doses" of 50mg at one time. Was this for Mb12, Ab12 or both? Has anyone tried this and if so, what were the results? Also, is there a particular way to do this, (ie. am or pm, with metafolin, etc.), or do you just stuff 10 sublinguals between your cheek and gum and see what happens?

Thanks.

 

[Sasha]

Hi, Sasha.

Freddd and I have both modified our suggested protocols since 2009. I'll let Freddd update you on his protocol. The latest version of the one I've suggested is pasted below. [...]

Thanks, Rich - it's all interesting stuff!