Simplified Methylation Protocol Revised as of Today

[richvank]

Rich,in an earlier post on this thread you wrote:
"The problem with B12 in ME/CFS is that there is a functional deficiency of it due to the depletion of glutathione. While there may be enough B12 in the body by normal standards, in ME/CFS the cells are not able to use it at normal rates, because the depletion of glutathione drastically decreases the affinity of the CblC complementation group in the cells for cobalamin. A high-dose regimen of B12 supplementation is necessary to overcome this until glutathione comes back up. In the past, we just tried to boost glutathione directly, but this was not successful as a permanent means of raising it. On the other hand, if a combination of a reduced form of folate is taken orally, together with high-dose B12 taken sublingually or by injection, the vicious circle can be broken, and methylation, folates, and glutathione can be restored. We have verified this by lab testing, and it works."

Are you suggesting that supplementation with glutathione (lyposomal) is really not necessary ?

.What do you consider an appropriate "high dose regimen" of sublingual B12?

I recently bought MegaFood Balanced B Complex (whole food B complex) since it did not have folic acid in it as most B Complex vitamins do. However it says it has 25 MG B-12, and 40 MG Folate. These seems to be huge amounts - or is most of it ineffective because it is taken orally.

Thanks,
alice

Hi, alice.

In our clinical study of the simplified protocol, we did not supplement glutathione, and it came up automatically. This was the breakthrough in autism research in 2004, and we found that the same applies in ME/CFS.

For people who suffer excitotoxicity symptoms on the simplified protocol (anxiety, insomnia, nervousness) I have suggested adding glutathione support, either liposomal or acetyl glutathione. I've received only a little feedback on this, but it does seem to help some people.

When I speak of a high dosage of B12, I mean in comparison to the RDA level for B12, which is only a few micrograms per day. The simplified protocol suggests 2 milligrams per day sublingual, and I think that would apply approximately to either hydroxocobalamin or methylcobalamin. People differ in what they need, so it may require some experimentation to find a dosage that is helpful and tolerable.

I presume that you mean milligrams when you write MG. A capital M means mega.

When a large dosage of B12 is swallowed, about 1% of it is absorbed by diffusion in the gut. So if you are referring to 25 milligrams of B12, that would be 25,000 micrograms, and 1% of that would be 250 micrograms. This is approaching an effective dosage for ME/CFS, but I think it would still be necessary to take some sublingually in addition.

If you mean 40 milligrams of folate taken orally, yes, that's a lot. Most PWMEs need only about an RDA level of one of the active forms of folate, which is less than 1 milligram per day.

Best regards,

Rich

 

[Lynn_M]

Rich,
I see that the HDRI methylation pathways panel does not measure B12 . Will the test results indicate if there functional sufficiency of B12? Will they indicate if I need to take more B12?

 

[richvank]

Rich,
I see that the HDRI methylation pathways panel does not measure B12 . Will the test results indicate if there functional sufficiency of B12? Will they indicate if I need to take more B12?

Hi, Lynn.

It's true that the HDRI panel does not measure B12. The European Lab of Nutrients version includes a measurement of methylcobalamin. On the HDRI panel, if there is a partial methylation cycle block and glutathione depletion, a functional B12 deficiency can be inferred on the basis of the 2011 Korean paper that I have been citing lately. When glutathione goes down, the affinity of CblC for cobalamin drops drastically, and that causes the functional B12 deficiency, which in turn causes the partial block in the methylation cycle, according to my hypothesis. If there is a partial methylation cycle block, both B12 and folate are needed to lift it.

Best regards,

Rich

 

[Debi]

Hi,all.

As of today, I am suggesting a revised form of the Simplified Treatment Approach
for lifting the partial methylation cycle block in ME/CFS. The revised form is
shown below.

The changes involve using liquid supplements where possible, and a capsule
rather than a tablet, so that dosages can be divided more easily. Hopefully
this will be more convenient than having to split tablets.

I've eliminated folic acid from the protocol in favor of the active, reduced
forms of folate, exclusively, since folic acid is not readily utilized by some
patients, and it competes with the active forms for absorption.

I've also provided for use of lecithin in place of phosphatidylserine complex,
because the latter can decrease cortisol in patients whose
cortisol is already too low.

Because the revised protocol has substantially the same content as the protocol used in the clinical study conducted by Neil Nathan, M.D. and myself, the results of that study should apply to the revised protocol as well.

I would appreciate any feedback on how this works out for those of you who
decide to try it.

Best regards,

Rich


March 30. 2011


SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME

 

[Debi]

Hi, JimK.

I've now gotten the protocol posted on this thread. Metafolin, FolaPro, and Deplin are all the same substance. Dr. Amy Yasko's new MethylMate B, which is in the revised protocol, is a liquid form of the same substance, which is the biologically active form of methylfolate. I have switched to the liquid form in the revised protocol because many people with ME/CFS find that they are not able to tolerate very much of it at first, and using the liquid form is more convenient than having to split or crush tablets, which can be difficult especially for people who are very ill.

Best regards,

Rich

Hello,
I am new to this forum, so forgive me if I am in the wrong place - perhaps you can direct me. I have not seen anyone talk about their test results for methylation cycle testing by Yasko. I took the test and know where my mutations are, I just need help interpreting it and working out a plan of action with someone skilled in this. Due to the number of mutations, there are things you would do for CBS issues are not the same as you would do for a COMT issue and would be at odds with each other.Also, have been dealing with Lyme & viruses. Does anyone have any suggestions of either someone who will work long distance with me or who is in California? Thanks, Debi

 

[Lynn_M]

Debi,
You might look here http://forums.phoenixrising.me/index.php?forums/genetic-testing-and-snps.12/ for discussion about snps. Also here http://www.heartfixer.com/AMRI-Nutrigenomics.htm.

 

[Googsta]

Hi Rich

I began the Simplified Protocol about 6 weeks ago, but I have only managed to take the Folinic Acid for a week & a half. I expected agitation & a worsening of symptoms, however I ended up quite suicidal. After two days of crying & feeling numb I stopped the Folinic & the next day I was fine.
Is this a typical reaction to Methylation or is something else going on?

I could perhaps try a lower dosage for a while, or could I take extra Methlyfolate instead & still have the same effect?

I am doing really well otherwise, am able to walk 30 minutes most days. My psoriasis has returned shortly after starting the protocol, I am guessing that could be the immune system activating or something. It's no real bother, just looks bad.

I would really appreciate some guidance as it is quite concerning. Thankyou for your time in helping us

 

[richvank]

Rich,in an earlier post on this thread you wrote:
"The problem with B12 in ME/CFS is that there is a functional deficiency of it due to the depletion of glutathione. While there may be enough B12 in the body by normal standards, in ME/CFS the cells are not able to use it at normal rates, because the depletion of glutathione drastically decreases the affinity of the CblC complementation group in the cells for cobalamin. A high-dose regimen of B12 supplementation is necessary to overcome this until glutathione comes back up. In the past, we just tried to boost glutathione directly, but this was not successful as a permanent means of raising it. On the other hand, if a combination of a reduced form of folate is taken orally, together with high-dose B12 taken sublingually or by injection, the vicious circle can be broken, and methylation, folates, and glutathione can be restored. We have verified this by lab testing, and it works."

Are you suggesting that supplementation with glutathione (lyposomal) is really not necessary ?

.What do you consider an appropriate "high dose regimen" of sublingual B12?

I recently bought MegaFood Balanced B Complex (whole food B complex) since it did not have folic acid in it as most B Complex vitamins do. However it says it has 25 MG B-12, and 40 MG Folate. These seems to be huge amounts - or is most of it ineffective because it is taken orally.

Thanks,
alice

Hi, Alice.

Many people have been able to restore their glutathione levels by lifting the methylation cycle block, without direct supplementation of glutathione. This treatment probably does initially lower glutathione still further, and this can make the symptoms worse at first. If this is a problem, it may be possible to support glutathione initially by adding liposomal or acetylglutathione to the protocol.

I suggest 2 milligrams per day sublingually of hydroxoB12. Specifically, I think the Perque B12 Guard lozenge works pretty well, probably better than the liquid drops.

I looked up the MegaFood Balance B Complex, and it actually has 400 micrograms of folate from broccoli and 125 micrograms of B12 from a yeast that is included. The broccoli-based folate may be partly folinic acid and partly methylfolate. I don't know if you would need to add more methylfolate, but perhaps so. The B12 taken orally will result in only a small amount absorbed into the blood, so more would need to be added.

Best regards,

Rich

 

[richvank]

Hi Rich

I began the Simplified Protocol about 6 weeks ago, but I have only managed to take the Folinic Acid for a week & a half. I expected agitation & a worsening of symptoms, however I ended up quite suicidal. After two days of crying & feeling numb I stopped the Folinic & the next day I was fine.
Is this a typical reaction to Methylation or is something else going on?

I could perhaps try a lower dosage for a while, or could I take extra Methlyfolate instead & still have the same effect?

I am doing really well otherwise, am able to walk 30 minutes most days. My psoriasis has returned shortly after starting the protocol, I am guessing that could be the immune system activating or something. It's no real bother, just looks bad.

I would really appreciate some guidance as it is quite concerning. Thankyou for your time in helping us

Hi, Googsta.

It's possible that you could be one of the people whose cells are not able to use folinic acid well. Freddd has reported that he is not able to tolerate it. I would recommend that you avoid folinic acid and just use methylfolate. You can adjust the dosage to what seems to work best for you. You may need to increase it some.

Note that folinic acid is found in some vegetables. Have you had any problems when you eat vegetables? Freddd has reported that vegetables do cause problems for him.

Best regards,

Rich

 

[alice]

Hi, Alice.

I looked up the MegaFood Balance B Complex, and it actually has 400 micrograms of folate from broccoli and 125 micrograms of B12 from a yeast that is included. The broccoli-based folate may be partly folinic acid and partly methylfolate. I don't know if you would need to add more methylfolate, but perhaps so. The B12 taken orally will result in only a small amount absorbed into the blood, so more would need to be added.

Best regards,

Rich

Hi Rich
Sorry - I as looking in the wrong column----- . I will continue with the Perque B12 SL and methylfolate in addition to the MegaFood Balance B Complex.

I'd welcome any opinions of what the general feeling is of nutritional supplements made from fresh food, like the MegaFood brand?..
alice

 

[richvank]

Hi Rich
Sorry - I as looking in the wrong column----- . I will continue with the Perque B12 SL and methylfolate in addition to the MegaFood Balance B Complex.

I'd welcome any opinions of what the general feeling is of nutritional supplements made from fresh food, like the MegaFood brand?..
alice

Hi, Alice.

The food-based ones are probably better, so long as they do contain enough of the nutrients.

Best regards,

Rich

 

[Googsta]

Hi Rich,
thanks for your response .
The only vegetables containing folinic acid I am aware of are lettuce, spinach, carrots and peppers? I am fine with all of these, even in large quantities.
The only things I am particularly sensitive to are pumpkin, sweet potato, onion, garlic & citrus though I enjoy tomatoes in moderation.

I will try increasing the methylfolate over the next few days. Thanks again

 

[LisaGoddard]

Hi Rich,
I live in the UK and would like to try the methylation protocol that you suggest. Has it changed since your first
posting on this thread of March 2011? I've found the only thing that helps so far is TMG (betaine) but I gather this is not a good thing to take.

Is it still....1. General Vitamin Neurological Health Formula [2]:
2. Hydroxy B12 Mega Drops [3]:
3. MethylMate B [4]:
4. Folinic acid [5]:
5. Phosphatidyl Serine Complex [6]?

Thanks for your help,
Lisa

 

[Uno]

This is the latest from Rich as far as I can see.....but substitute Phosphatidyl Serine for Lecethin.

Hope this helps
x




SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROM (March 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 one-quarter 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]: one-quarter 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.may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY Patients who already have lower than normal cortisol 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. one-quarter 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.
richvank, Mar 31, 2011
#7

 

[LisaGoddard]

This is the latest from Rich as far as I can see.....but substitute Phosphatidyl Serine for Lecethin.

Hope this helps
x

Hi Uno, Thanks for the prompt reply! I've been having difficultly trying to track down these supplements in the UK. Have you tried the protocol and found the same problem? I wonder if you or any other UK people could recomment suppliers or alternative supplements.
Lisa

 

[richvank]

Hi, Lisa.

You might try vitaminsuk.com or mandimart.

 

[Lola23]

Hi guys I am new to this website. I totally believe methylation is key to my healing from CFS/ fibro. Two years ago I took 800mcg folic acid and felt AMAZING for two weeks. I slept better. My back pain went away. Then all of a sudden I started to get a migraine every time I took the folic acid. Even when I halved the dose and took it a month later, I still got a migraine. Now two years later, I still can't tolerate even a quarter of a tablet of metafolin. What is going on? I also get an immediate migraine from B12...even if I nibble off the slightest bit of a tiny active B12, I get a SPLITTING headache to the point of having to lie in bed in pain for the next 24 hours.

Does anyone know what could be going on? Or what I could do to be able to tolerate folic acid and B12? I know if I could tolerate these vitamins, I would feel much better. For some reason B6 or P5P gives me no problem at all.

 

[richvank]

Hi, Lola.

I don't know why folate and B12 give you bad headaches. I wonder if you might have some other deficiencies. It would be helpful if you could do some testing to find out, I think.

Best regards,

Rich

 

[Lola23]

Thanks for the reply. What kind of testing should I get?

 

[Googsta]

Hi Rich

Unfortunately I am experiencing the same problems with the Methylfolate as the Folinic Acid i.e severe depression. It seemed fine at first but after one week I had the same issues. I stopped the entire protocol Thursday (Saturday here) & am still having these negative effects.

Taking the half tablet of metafolin seemed tolerable, I was more anxious but not depressed. Would that amount be sufficient?

Any ideas why this is happening? I wasn't depressed at all before introducing these two components. It is so frustrating!

Thanks

UPDATE 9th Aug: Have been feeling fine again since Sunday afternoon.