Two weeks into the simplified protocol, advice and encouragement please...!

[Bananas]

Hello and thank you to all the people who gave me some advice a few weeks back. After considering what everyone was saying, we decided to try Rich's revised simplified protocol on my husband, and see what happened. Our biggest fear was that nothing would happen, but quite the reverse, we got quite a number of the side effects of die-off and detox, as listed on Dr. Myhill's site. He has been feeling muzzy and dozy, with the waxing and waning fatigue (taking mid-day rests and going off to sleep - healing naps!), he has been a bit irritable if I'm honest, some strong emotions, runny nose, sore throat, effects on bowel movements and unusual colour of stools.

On the positive side, he did feel at one point that his typing had sped up when he worked, and he has sometimes slept through the night, which is rare. So something is definitely happening.

The only problem is, that overall, he is not feeling too great about it. He has cut the medication down to the lowest possible doses of everything, and intends to build up when his body is more used to the vitamins, and last night, decided that he would take a 'day off' from them, and so took nothing - was this a bad decision?

So I suppose my question is, how long has it taken for other people to adapt to having the vitamins in their system? How long does the 'die off' phase last? He is quite happy to continue with the protocol if eventually his system will pick up, but just needs some words of encouragement from anyone who has gone through this before and come out the other side. Obviously we know that what happens to one person cannot be guaranteed to happen to another, but it is a question of how long do we continue with this experiment if it is mainly generating unpleasant side effects? Many thanks in advance for any replies.

 

[Sherpa]

I never had a die off type reaction from methylation supplements. Maybe someone else can chime in with advice who has had similar symptoms.s!

 

[Sushi]

I also had to "restart" at absolutely tiny doses. We used to call them toothpick doses as we would crush a tablet and dip a moistened toothpick into it as a dose.

In my own experience I raised the doses slowly enough to avoid difficult symptoms. If I goofed, I backed off. In my opinion, it is fine to miss a day or more to get over symptoms. Others might disagree. It took me about 3 months to work up to the recommended doses.

Best wishes,
Sushi

 

[Bananas]

Thank you both for answering. Sushi, I think we will be doing what you did - tiny doses. Thing was, when he first had symptoms we thought it was great that something was obviously happening, but after two weeks of him feeling not so good, we started wondering whether there was a time period where we should just stick it out and put it down to die-off and detox, because frankly, he was getting a bit disheartened by the fact there were more negative symptoms than positive improvements.

After I posted yesterday, I did some more reading on the forum, and we have decided to leave of taking anything until he feels a bit more 'normal' and then introduce small doses of the vitamins one at a time, and record the effect of each one, starting with the multi-vit as recommended by someone on here, then the lecithin, then the methylcobalamin and finally the folate. That way, we can figure out which one is having which effect. I find reading on here a bit overwhelming, because as someone said, M.E. sufferers are like snowflakes, and what becomes apparent is that everyone reacts differently and has different imbalances, so it is all trial and error. But three months is not a problem given we have been living with the illness for 15 years! I read the 'slow and low' theory and that will be our mantra.

 

[idn0]

starting with the multi-vit as recommended by someone on here, then the lecithin, then the methylcobalamin and finally the folate

I don't think Rich's simplified theory suggests MeCbl, does that mean you're actually doing Freddd's?

I'm starting Freddd's and in the middle of gradually building up my basic supplements (B Complex, D, C, E, Fish Oil, Lecithin, Calc/Mag, ALA, Zinc, Selenium, Chromium, Potassium). Will begin my active B12s & Folate next week, and finally the cofactors after that.

Low and slow, with a detailed diary is the only way to go! As tempting as it is to get cracking on the active B12s, my system needs to be ready for the intense healing that will come with that.

At least you know it is having an effect, and methylation is a problem (but a fixable one!) for your hubby.

Goodluck

 

[Bananas]

I don't think Rich's simplified theory suggests MeCbl, does that mean you're actually doing Freddd's?

I'm starting Freddd's and in the middle of gradually building up my basic supplements (B Complex, D, C, E, Fish Oil, Lecithin, Calc/Mag, ALA, Zinc, Selenium, Chromium, Potassium). Will begin my active B12s & Folate next week, and finally the cofactors after that.

Low and slow, with a detailed diary is the only way to go! As tempting as it is to get cracking on the active B12s, my system needs to be ready for the intense healing that will come with that.

At least you know it is having an effect, and methylation is a problem (but a fixable one!) for your hubby.

Goodluck

Oh gosh - I am confused now - maybe I got mixed up. I think we are doing Rich's first, and may then change to Fredd's if it doesn't work out. Maybe it is not methylcolbalamin.... I get very mixed up with all the names and brand names and variations, what with it all being a new endeavour. idn, did you try Rich's first and then decide to do Fredd's? and if not, what made you choose Fredd's to try first? Does it work better on certain types of symptoms, or has it been more successful with more people? My husband felt better yesterday and said he was going to take a tiny bit of multivitamin last night to see if that alone could be tolerated without symptoms. His system needs to be ready too! He is impatient though. I passed on a message from Sushi a few weeks back that he should start slowly, but he was so anxious for a 'result' he ploughed straight in, but he is now understanding that he needs to be more cautious!!

 

[idn0]

I have not tried Rich's. Decided to go for Freddd's as it made more sense to me.

The theories are the same, meaning what each protocol is trying to correct. The difference is that Freddd advocates the active forms of B12 and folate, and Rich advocates the inactive forms as a default (he does agree some people need active forms, but believes that to be somewhat of a rarity I think). Freddd says the inactive forms are largely useless and actually harmful to some.

The attachment I linked in my last post is a simplified guide to Freddd's protocol written by another member on this site. It includes supplement order, brands (some), dosages etc.

I'm still in the first phase (basic vitamins and minerals) and have yet to even touch the B12s, but am relatively confident in what I have read. I'm starting vitamins/minerals at full dose as I have never really had issues with anything like that, but will start low with the B12s to be safe.

I am new to all this stuff, and can't claim to have it right, but I am pretty confident for myself that Freddd's protocol is the way to go.

 

[Sushi]

The difference is that Freddd advocates the active forms of B12 and folate, and Rich advocates the inactive forms as a default (he does agree some people need active forms, but believes that to be somewhat of a rarity I think). Freddd says the inactive forms are largely useless and actually harmful to some.

Comment: Rich also advocates the active form of folate. He advises trying hydroxocobalmin in his basic protocol because it is one step from being "active" and most are able to convert it to the active form. He does this because it lets the body "decide" how much to convert to methylcobalamin and how much to adenosylcobalamin (both are active forms) rather than the patient deciding these conversion proportions.

For those who don't respond to hydroxocbalamin, he advises trying methylcobalamin.

Sushi

 

[Bananas]

Thanks Sushi - this makes the difference a bit clearer then. My husband is now looking at taking some adrenal support at the same time and he thinks it could be key to coping. He has always been very concerned about adrenal fatigue.

 

[idn0]

Ah yes, Rich said this in his revised protocol

"I had also considered changing the form of B12 to methylcobalamin. Some PWMEs do need to use this form, particularly if their glutathione and/or S-adenosylmethionine are very low. However, use of hydroxocobalamin is a “gentler” approach to lifting the partial methylation cycle block, and many PWMEs need such an approach. Use of hydroxocobalamin also keeps the cells in control of the rate of the methylation cycle, preventing it from being overdriven, which slows the rise of glutathione. So I have decided to stay with hydroxocobalamin as the first form of B12 to try. For people who do not get a response from the SMP within a couple of months, switching to methylcobalamin would be an option to try. Another option would be to try adding some adenosylcobalamin (dibencozide). However, I do not favor raising the overall dosage of B12 very much above 2,000 micrograms per day, and especially not when it is combined with dosages of methyfolate that are much above the RDA range of 400 to 800 micrograms per day. This combination can overdrive the methylation cycle and hinder the rise of glutathione."

This is a summary of the differences between Freddd, Rich and Dr. Yasko:
http://howirecovered.com/active-b12-therapy-faq/#Freddd-vs-Amy-Rich