Diary of a PWC on the Methylation Block Protocol

[zenzero-2001]

Hi Everybody

Today my supplements arrived for beginning the Methylation Block Protocol and I am feeling some trepidation. I know that I should start slowly with a quarter tablet for the Actifolate, Intrinsi/B12 and the Neurological Health Formula. But should I take all five supplements (plus the extra selenium) right from the beginning or should I introduce one supplement at a time?

I have decided to keep a diary of my progress on this forum whilst taking protocol. I will give an account of how and if my symptoms change and what I took.

Currently, I am taking 20 mg Fluoxetine and am on a course of Terbinafine for a fungal infection, I have two weeks left to go on this. I am also taking acidophilus pearls, I have ten days left of those.

Today, I am feeling quite rough. I have a thick head and am very tired. My legs ache and so does my head and ears. I have some pain and tenderness around the lymph nodes in my head and neck. I feel so tired that I am feeling a bit emotional and possibly irritable.

Zen

 

[richvank]

Hi Everybody

Today my supplements arrived for beginning the Methylation Block Protocol and I am feeling some trepidation. I know that I should start slowly with a quarter tablet for the Actifolate, Intrinsi/B12 and the Neurological Health Formula. But should I take all five supplements (plus the extra selenium) right from the beginning or should I introduce one supplement at a time?

I have decided to keep a diary of my progress on this forum whilst taking protocol. I will give an account of how and if my symptoms change and what I took.

Currently, I am taking 20 mg Fluoxetine and am on a course of Terbinafine for a fungal infection, I have two weeks left to go on this. I am also taking acidophilus pearls, I have ten days left of those.

Today, I am feeling quite rough. I have a thick head and am very tired. My legs ache and so does my head and ears. I have some pain and tenderness around the lymph nodes in my head and neck. I feel so tired that I am feeling a bit emotional and possibly irritable.

Zen

Hi, Zen.

I'm sorry that you are feeling so badly today.

Some people have chosen to start the methylation protocol slowly, adding one supplement at a time, while others have taken all of them from the beginning.

For those who have asked about starting slowly, I have suggested starting with the Neuro Health Formula, because it will help the overall nutritional status and counter deficiencies in vitamins and essential minerals that might be present. After this, I have suggested adding support for the phospholipids. In earlier versions of the protocol, this was phosphatidyl serine complex. More recently, I have suggested that for people who have low cortisol, lecithin might be a better choice. After these are being taken and tolerated, then adding the sublingal hydroxocobalamin would be next. Finally, adding the reduced folates, coming up slowly, would be the last ones to add.

I think you must be referring to an earlier version of the protocol. I no longer recommend Intrinsi/B12/folate, because the supplier of this supplement changed the formulation so that it no longer contains folinic acid. Most recently, the two folate supplements I am suggesting are folinic acid and MethylMate B, which is a liquid form of 5-methyl tetrahydrofolate. Since you have Actifolate on hand, I would suggest going ahead and using it. It contains three forms of folate. I have substituted folinic acid for Actifolate in the most recent version of the protocol in order to lower the amount of folic acid in the protocol, because some people are not able to utilize it very well, and it competes for absorption with the two more active folate forms, but Actifolate has worked well for many people. You didn't mention FolaPro, but if you have that, it is a good form of 5-methyl tetrahydrofolate. I switched to MethylMate B because it is a liquid, and I thought this might be more convenient than having to split tablets.

I'm sorry about the confusion in protocols. I had to change from Intrinsic/B12/folate because the supplier changed its formula. I made the other changes for the reasons I mentioned, in order to improve the protocol as more was learned and more experience was reported. The first protocol was suggested in early 2007, and there have been several revisions since then.


Here is the most recent version of the simplified methylation protocol:

March 30. 2011

SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE PARTIAL 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.

Best regards,

Rich

 

[Freddd]

Hi Everybody

Today my supplements arrived for beginning the Methylation Block Protocol and I am feeling some trepidation. I know that I should start slowly with a quarter tablet for the Actifolate, Intrinsi/B12 and the Neurological Health Formula. But should I take all five supplements (plus the extra selenium) right from the beginning or should I introduce one supplement at a time?

I have decided to keep a diary of my progress on this forum whilst taking protocol. I will give an account of how and if my symptoms change and what I took.

Currently, I am taking 20 mg Fluoxetine and am on a course of Terbinafine for a fungal infection, I have two weeks left to go on this. I am also taking acidophilus pearls, I have ten days left of those.

Today, I am feeling quite rough. I have a thick head and am very tired. My legs ache and so does my head and ears. I have some pain and tenderness around the lymph nodes in my head and neck. I feel so tired that I am feeling a bit emotional and possibly irritable.

Zen

Hi Zen

I would avoid the Neurological Health formula like the black plague. It has NAC which can cause induced folate deficiency completely preventing methylation startup. It has folic acid that can block 10x as much Metafolin. If you are sensitive to them, then folic acid and/or folinic acid can block active folate causing paradoxical folate deficiency completely preventing methylation startup. It aslo contains cyanocbl which is the worst possible least effective cobalamin. Hydroxycobalamin is only slightly better. If this doesn't make a substantial difference in 3 months you might want to switch to Metafolin, mb12 and adb12, 100 to 10,000 times as effective as the hydroxycbl/cyanocbl which will start methylation in 24 hours or less and often start the mitochondria just as fast.

 

[zenzero-2001]

Thanks for the info Rich.

That is annoying that I have bought the wrong stuff. I did notice and even read the sticky post about the revised protocol, but for some reason I thought it was out-of-date and that the other protocol was the up-to-date one. I blame the CFS, everything just seems so difficult, nothing makes any sense. I make so many mistakes, it is not like me

I will try and get some new supplements. Not sure what I will do with the Intrinsi B12 / Folate, it was very expensive and I assume the store does not take returns.

 

[Freddd]

Thanks for the info Rich.

That is annoying that I have bought the wrong stuff. I did notice and even read the sticky post about the revised protocol, but for some reason I thought it was out-of-date and that the other protocol was the up-to-date one. I blame the CFS, everything just seems so difficult, nothing makes any sense. I make so many mistakes, it is not like me

I will try and get some new supplements. Not sure what I will do with the Intrinsi B12 / Folate, it was very expensive and I assume the store does not take returns.

Hi zenzero,

I would start with what you have right now, except for that neurological health formula. I took ineffective things for years, and they were mostly just ineffective rather than damaging. It may work to some degree and get you started which is the most important consideration. Then you have a basis for comparison when you make other changes and know for sure how YOU respond to these various things. If it doesn't work you will also know. I have passed on a lot of vitamins to various people who were able to use them to some degree and served to get them started which they could then alter as they went on.

 

[zenzero-2001]

Thanks Freddd, I will do that. I will introduce the neurological health formula last.

I contacted the store I bought the supplements from and they said they can do a refund for the intrinsi b12 / folate if I return it unopened with a note. So that it is good.

To summarize, these are the supplements I will be taking each day:

Vital Whey, 1 scoop - 20g
ActiFolate, 1/4 tablet
Perque Activated B-12 Guard, 1 lozenge under tongue (2000mcg hydroxocobalamin)
Phosphatidyl Serine Complex, 1 softgel (500mg)
Selenium, 1 tablet (200mcg)

Neurological Health Formula, 1/4 tablet (later on, depending on how things go)

When I have finished the ActiFolate, I will switch to FolaPro or MethylMate B (if I can find it in the UK). After finishing the ActiFolate, I will also take the folinic acid.

I have been taking a general multi-vitamin (Multibionta) and 10mg additional zinc for a year or so. I will stop these whilst on the new protocol, even if I chose not to take the Neurological Health Formula.

I think I will put a B12 lozenge under my tongue this evening and start the rest (excluding the Neurological Health Formula) tomorrow morning.

Zen

 

[Freddd]

Thanks Freddd, I will do that. I will introduce the neurological health formula last.

I contacted the store I bought the supplements from and they said they can do a refund for the intrinsi b12 / folate if I return it unopened with a note. So that it is good.

To summarize, these are the supplements I will be taking each day:

Vital Whey, 1 scoop - 20g
ActiFolate, 1/4 tablet
Perque Activated B-12 Guard, 1 lozenge under tongue (2000mcg hydroxocobalamin)
Phosphatidyl Serine Complex, 1 softgel (500mg)
Selenium, 1 tablet (200mcg)

Neurological Health Formula, 1/4 tablet (later on, depending on how things go)

When I have finished the ActiFolate, I will switch to FolaPro or MethylMate B (if I can find it in the UK). After finishing the ActiFolate, I will also take the folonic acid.

I have been taking a general multi-vitamin (Multibionta) and 10mg additional zinc for a year or so. I will stop these whilst on the new protocol, even if I chose not to take the Neurological Health Formula.

I think I will put a B12 lozenge under my tongue this evening and start the rest (excluding the Neurological Health Formula) tomorrow morning.

Zen

Hi ZEN,

The things tha might sabotage your healing are methylmate B that contains glutathione, neurological health formula with NAC, Vital Whey that is a glutathione precursor, both of these can cause mild to severe folate deficiency and later b12 deficiencies. The hydroxyb12 needs to be replaced with adb12 and methylb12 (100-10,000 times more effective for ALL the symptoms for most everybody rather than up to 1/3 of the symptoms for only 2/3 of people.

Until you elliminate all those things and get rid of all folic acid and folinic acid in multiple formulas and go to Metafolin only and active b12s mb12-adb12 only you will never know how much these items are sabotaging your potential healing. That will only happen after you get a good rate of healing working and then add them in and observe. As it take a while for the detrimental effects to build up careful observation is key.

So start WITH WHAT YOU HAVE, get the replacements and elliminate all of the potentially offending items until you are in a stably healing mode, then try adding them in to see what effects they have if any. Then you will also know the differences. In trying to heal from this the glutathione and precursors, folic acid and folinic acid is like playing Russina Roulette, they will cause some people massive problems and others no problem at all. Until you try without any potentially offending items you will not have a definitive answer for yourself.

The hydroxycbl's main offense is that it works so poorly. I don't think it is potentially damaging in the same way as the other items and might even help a little until you get suitable replacements. Hydroxycbl can actually allow a lot of b12 deficiency symptoms to get a lot worse and turn them into an invisible mystery disease.

 

[zenzero-2001]

Thanks for the info Freddd, I will take it one step at a time

Is it safe to take methylcobalamin when I have two amalgam fillings?

 

[Freddd]

Thanks for the info Freddd, I will take it one step at a time

Is it safe to take methylcobalamin when I have two amalgam fillings?

YES!

Two fillings are trivial. The fear created by the mythology around mercury far outweighs any real danger. I used to have many more than that and their routine replacement over the years with composite filling has made no difference in me. My children NEVER had any mercury in their mouth and that made no difference in their developement of these problems we all share as they have the same needs for mb12,adb12 and Metafolin as I have.

 

[Valentijn]

I haven't had any noticeable problems from taking NAC. In fact, a large dose helps me immensely with sleeping and has completely gotten rid of the mentally "wired" sensation.

HydroxyB12 also works very well for me (and for most people, it sounds like). I noticed no improvement when using methylB12 intermittently while on vacation, but I didn't have adenosylB12 with it.

I take the Ortho Core multi now, since it has folate instead of folic acid, and methylB12 instead of cyanoB12.

 

[Freddd]

I haven't had any noticeable problems from taking NAC. In fact, a large dose helps me immensely with sleeping and has completely gotten rid of the mentally "wired" sensation.

HydroxyB12 also works very well for me (and for most people, it sounds like). I noticed no improvement when using methylB12 intermittently while on vacation, but I didn't have adenosylB12 with it.

I take the Ortho Core multi now, since it has folate instead of folic acid, and methylB12 instead of cyanoB12.

Hi Valentijn,

In fact, a large dose helps me immensely with sleeping and has completely gotten rid of the mentally "wired" sensation.
It would. That would be entirly predictable based on it's effects. It neutralizes the mb12/adb12 in the brain that likely causes the feeling. That is what kind of active b12 that is in the CSF/CNS regardless of what you take to get there. Since it gets rid of the "wired" feeling and that is a major signpost of the road to healing I would say that NAC is affecting you. Further it would prevent me and lots of people from finding any difference between hycbl and mb12.

Healing isn't always pleasant while it is happening. How it feels may not be the best guide. For instance, glutathione reduced some pains considerably for me. So at first it seemed to be helping. A little while later it became obvious that it was reducing pain by damaging the nerves and numbing them out, an undesireable effect. So far in two years after quitting it my nerves have not made it back to where they were just before this extra damage.

Good luck.

 

[zenzero-2001]

Day 1: Today I started the supplements. I took 1/4 tablet Actifolate, 1 x Phosphatidyl Serine, 1 x Sublingual Hyrdoxocobalamin and 1 x Selenium at about 8 am this morning - it is now almost 7pm

I'm not feeling any different than I did yesterday, there has been no change good or bad. I am interpreting this as a good thing. I will take my Vital Whey about an hour before bed.

Because I am currently only taking the Actifolate (and not FolaPro and / or folic acid), would it be benficial to take a higher dose? Perhaps 1 whole table per day?

 

[Sushi]

Day 1: Today I started the supplements. I took 1/4 tablet Actifolate, 1 x Phosphatidyl Serine, 1 x Sublingual Hyrdoxocobalamin and 1 x Selenium at about 8 am this morning - it is now almost 7pm

I'm not feeling any different than I did yesterday, there has been no change good or bad. I am interpreting this as a good thing. I will take my Vital Whey about an hour before bed.

Because I am currently only taking the Actifolate (and not FolaPro and / or folic acid), would it be benficial to take a higher dose? Perhaps 1 whole table per day?

Having done this protocol, I would not up the dose yet. I did fine for 3 days and then crashed. The effect seems to be cumulative. Give it a few days, I'd say.

Sushi

 

[zenzero-2001]

Thanks, I will take it steady for a few days

 

[Freddd]

Day 1: Today I started the supplements. I took 1/4 tablet Actifolate, 1 x Phosphatidyl Serine, 1 x Sublingual Hyrdoxocobalamin and 1 x Selenium at about 8 am this morning - it is now almost 7pm

I'm not feeling any different than I did yesterday, there has been no change good or bad. I am interpreting this as a good thing. I will take my Vital Whey about an hour before bed.

Because I am currently only taking the Actifolate (and not FolaPro and / or folic acid), would it be benficial to take a higher dose? Perhaps 1 whole table per day?

The whey can make sure you don't have any corrective or healing effect. My opinion is that to give the things you are trying the best chance to work you may need to ditch the whey.

With methylb12 and methylfolate a person is very likely to feel the changes starting 15 minutes after the mb12 goes under the tongue and 85% within 1 hour. A quarter tablet might reduce the level of deficiency a bit but won't correct it and if it is blocked then it will make no differene at all.

 

[Valentijn]

It neutralizes the mb12/adb12 in the brain that likely causes the feeling. That is what kind of active b12 that is in the CSF/CNS regardless of what you take to get there. Since it gets rid of the "wired" feeling and that is a major signpost of the road to healing I would say that NAC is affecting you. Further it would prevent me and lots of people from finding any difference between hycbl and mb12.

The wired feeling lasted for months without any improvement in other symptoms. I think it's more plausible that it was due to high levels of the neurotransmitter glutamate, resulting from a cysteine deficiency. Mentally I feel perfectly normal now. I have trouble seeing how my brain being so badly messed up could be a sign of healing, especially during a time when ME symptoms were worsening.

 

[zenzero-2001]

Day 2: I took the same dose of supplements this morning and no reactions to report

I've been feeling pretty depressed most of today, but it has been coming on all week. Actually, I feel marginally happier this evening though. It's not anything to do with the supplements, just me finding things difficult.

I think I will keep on with the whey powder for a bit longer, I think it is helping me. I will probably leave it off for awhile at some stage and see what happens.

 

[zenzero-2001]

Day 3: I'm not feeling any different, better or worse. I'm usually more tired on a Saturday and so it was this afternoon when I had a nap.

 

[Freddd]

The wired feeling lasted for months without any improvement in other symptoms. I think it's more plausible that it was due to high levels of the neurotransmitter glutamate, resulting from a cysteine deficiency. Mentally I feel perfectly normal now. I have trouble seeing how my brain being so badly messed up could be a sign of healing, especially during a time when ME symptoms were worsening.

Hi Valentijn,

Methylb12 PROTECTS against glutamate toxicity. There can be all sorts of reasons for feeling wired. If a person is taking mb12 and no NAC, glutathione, folic acid, folinic acid, the wired feeling is usualy nerves coming back and ATP starting up. On a low dose that goes on and on and on becasue it never gets all the way started up so it keeps teasing it. However, mentioning only 1 factor or even no factors and making a statement of effect makes it quite impossible to know what is going on or even make more than a guess. While mb12 and methylfolate INTENSIFY the PERCEPTION of ME symptoms they don't worsen them. The deficiencies cause them in the first place. The symptoms that mb12/methylfolate stir up immediately tend to be the ones that heal most rapidly.

 

[zenzero-2001]

Day 4: Had a lousy night last night. Some youths were outside my house causing trouble, so I went out to tell them off. Didn't go to bed until 1.30am, still awake at 4.30am - too much adrenaline

Am very tired, will try and have an early night tonight. Tomorrow, I will try half an actifolate tablet. Not feeling any worse, apart from extra tired due to lack of sleep.