how long did it take for methylation protocols to effect your energy levels?

[penny]

Or when did you give up?

I've been on Fredd's protocol for about a month, and am just not seeing any increase in energy. I'm taking most all the cofactos (except didn't do well with sam-e/tmg) and have avoided the confounding factors (folic acid, gulthathione). And have been on decently large doses (of all the right brands) of the 12's (6mg mb12 a day, 6mg adb12 a week, LOTS of methylfolate - in the range of 4800mcg a day) for several weeks (sorry for the vagueness, I don't have my notebook with me that I track this in and my memory is crud).

My problem is that I seem to be tolerating most everything well now (had muscle cramping to start) but have had zero energy improvement. Just to be clear, I don't expect miraculous, dramatic or overnight results but I haven't had even a glimmer of energy improvement since starting this.

And it seems like everyone else has some at least initial energy increase (and everyone has a nicer car/better hair, etc. ; )

Could it really be taking this long even for an even temporary energy improvement? Or is this just not working for me?

 

[determined]

I'm far from an expert, but I am wondering if you had any of the negative signs when you started up, such as headaches, nausea, increase in fatigue, etc.

For me, when something has ultimately proven to be helpful, there has been that initial period of "adjustment," die-off, immune system reconstitution, whatever you want to call it.

If you didn't have any start-up effects AND it hasn't helped you, perhaps this isn't something you need. Let's see if others have any suggestions.

After reading your post again, I see that you had muscle cramping. But that's it?

 

[penny]

Thanks for the ideas Determined!
Yeah I think muscle cramping the first week. I do have nausea pretty regulary, but didnt change much with methylation. So hard to tell about fatigue, It seems about the same as before. No headaches.

So did these start ups then lead to you having improvements in some areas? How long till you saw some positive change?

 

[richvank]

Or when did you give up?

I've been on Fredd's protocol for about a month, and am just not seeing any increase in energy. I'm taking most all the cofactos (except didn't do well with sam-e/tmg) and have avoided the confounding factors (folic acid, gulthathione). And have been on decently large doses (of all the right brands) of the 12's (6mg mb12 a day, 6mg adb12 a week, LOTS of methylfolate - in the range of 4800mcg a day) for several weeks (sorry for the vagueness, I don't have my notebook with me that I track this in and my memory is crud).

My problem is that I seem to be tolerating most everything well now (had muscle cramping to start) but have had zero energy improvement. Just to be clear, I don't expect miraculous, dramatic or overnight results but I haven't had even a glimmer of energy improvement since starting this.

And it seems like everyone else has some at least initial energy increase (and everyone has a nicer car/better hair, etc. ; )

Could it really be taking this long even for an even temporary energy improvement? Or is this just not working for me?

Hi, Penny.

I'm sorry that Freddd's protocol has not given you an increase in energy.

As you may know, Freddd and I have somewhat different views about the dosages that most PWMEs need. Based on the test results I've seen, dosages of methyl B12 in the several milligrams per day, combined with dosages of methyfolate that are large compared to the folate RDA levels of a few hundred micrograms per day, overdrive the methionine synthase enzyme in the methylation cycle. This prevents enough homocysteine from entering the transsulfuration pathway to feed the synthesis of glutathione. So long as glutathione remains depleted, the mitochondria will remain dysfunctional, and the person's energy level will remain low. At these high levels of supplementation, the cells are not able to regulate the homocysteine flow as they normally do. The result of this is that the methylation cycle and the folate cycle develop a "futile cycle" between them, in which they pass excess methyl groups back and forth via sarcosine and 5L-methyltetrahydrofolate. You might consider lowering the dosages to something comparable to those suggested in the simplified treatment approach, pasted below.

Best regards,

Rich


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.

 

[Sasha]

Hi Penny - I'm one of the people who had an immediate (within minutes) improvement of energy with ab12 on Freddd's protocol, followed by increasing exhaustion and muscle cramping when I added in the mb12. It was clear that some of the exhaustion was due to an induced need for potassium because a test dose of 500mg sometimes fixed it, but in the end this didn't work and I was probably also having an induced extra need for magnesium which no amount of supplementing seemed to tackle. I've had to come off the protocol and am doing what rich suggests - starting again but with doses of the b12s and folates similar to those on rich's simplified methylation protocol. I've only just started, though, and haven't yet added in the b12s and folate.

 

[determined]

Hi Penny.

To answer your question, I recall that I felt more energetic almost right away and it lasted for a few weeks (the details are fuzzy now...). Then, the nausea, fatigue, headaches, and increase in chemical sensitivity began. All but the chemical sensitivity faded after a few weeks.

I really can't explain why my "diluted speck" doses have any effect at all, but I remain convinced that they do. I still have no desire to increase my dose, although I am very slowly adding some of the cofactors I may be missing.

Good luck Penny! I think Rich's advice to back down on the doses is worth trying.

 

[penny]

Thanks all!

I did start pretty low (1mg mb12 daily) and titrate up and didn't get any energy improvement, in fairness though I did this pretty quickly (probably within a week for the b12, two for folate). I'm not usually very medication sensitive but I have found that I only tolerate a very low dose of LDN (.2mg) - so perhaps I'm more sensitive than I realize and a speck of b vitamins is more what I need. Such a puzzle!

I think I'm going to take a hiatus from the methylation stuff for a bit - see what my body's reaction is to stopping it.

 

[Mary]

Penny - my energy increased on Freddd's protocol within a couple of days, and within a couple of days after that, I hit a wall of exhaustion, which turned out to be a sudden need for lots of potassium. I titrated up to 1000 mg. of potassium a day and now am down to 400 mg.

But I took much less methylfolate than you - I've been taking 6 mg. mb12, 8.6 mg. dibencozide (from Source Naturals) and 800 mcg. of methylfolate (Solgar brand) a day.

I feel better overall, but unfortunately I still crash just as easily as before, and after reading another post about chelation helping with PEM, am seriously considering giving that a try (Andrew Cutler's protocol).

So maybe you should try Rich's advice and lower your dose of the methylfolate at least and see how you do - good luck!

Mary

 

[Red04]

My wife had very slow changes. She couldn't notice the changes as they happened. It was like at the end of two months she looked up and was better.

I would give it another month or at least until you have to reorder vitamins.

Hang in there. You can click on my username and read through my posts and her journey.

 

[penny]

I was at the point of reordering several of them, which is part of why I was debating. It's a difficult protocol for me - between the cost, the many possible co-factors to test and the tooth pain from the sublinguals. My lack of response makes me think that this may not be my (dominant) problem right now, so even if it needs work my body isn't ready for that yet. Not very scientific, but I do think there's some value in our gut feelings about treatment - it's not like there's a one size fits all one out there (at least not yet!).

Not to say I won't try another variant of methylation supplementation again in the future. But I think I'll refocus on digestive issues and OI for a bit...

 

[richvank]

I was at the point of reordering several of them, which is part of why I was debating. It's a difficult protocol for me - between the cost, the many possible co-factors to test and the tooth pain from the sublinguals. My lack of response makes me think that this may not be my (dominant) problem right now, so even if it needs work my body isn't ready for that yet. Not very scientific, but I do think there's some value in our gut feelings about treatment - it's not like there's a one size fits all one out there (at least not yet!).

Not to say I won't try another variant of methylation supplementation again in the future. But I think I'll refocus on digestive issues and OI for a bit...

Hi, Penny.

It may very well be that your digestive system and other organ systems need to be built up some before you will be able to address the methylation issue. I note that Dr. Amy Yasko puts a lot of emphasis on this in her treatment of autism, which bears considerable biochemical similarity to ME/CFS. You might find her book Autism, Pathways to Recovery, of help.

Best regards,

Rich

 

[penny]

Ah well, that didn't work so well! Discontinued most of the methylation stuff and have been feeling much worse. Not 100% it's related (I think I've been heading into a crash for a while), but it seems compelling.

So back on a moderate dose (2.5mg mb12 and 1600 folate), we'll see how it goes. Oy.