Trying Simplified Methylation Protocol

Discussion in 'Fibromyalgia Main Forum' started by fincher, Jun 7, 2008.

  1. fincher

    fincher Member

    I've got the necessary supplements, and I'm beginning the simplified methylation protocol as described by Rich Van Konynenburg tonight. I've had ME/CFS for 17 years now. The first year was the worst, then I had the ups and downs for the next several years. My health has been quite a bit worse for the past two years. I went through the Fibromyalgia and Fatigue Centers protocol recommended for me personally for 8 months with no improvement. Since then, I've been working with the combined antiobiotic protocol designed by Dr. David Wheldon. I'm still not up to the full dosages on that protocol, and things have not been going well. My doctor at FFC suggested the simplified methylation protocol might be of benefit to me, so I want to give it a try.

    My problem is with taking 1/4 of a tablet of the Folapro and the Intrinsic B12/folate. I have a pill cutter, but the pills are too hard and crumble when I cut them. I crushed the pills as suggested and tried to divide them into four even doses, but this was very frustrating and rather time consuming, and my obsessive-compulsive tendencies are not happy with the fact that the doses might not be evenly divided. Does anyone have any better suggestions as to how this can be done? Also, why is the dosage so low?

    I'm also wondering why it's suggested we start with such a low dose of the Neurological Health Formula and only work up to one-third of a serving size as listed on the bottle. I've been taking vitamins and antioxidants for a long time, so I'm wondering what such a low dose can possibly do and why we might have difficulty starting out with more than 1/4 of a tablet.

    Having said all that, my obsessive-compulsive tendencies will compel me to follow the directions to the letter. I'm just not sure how long I'll be able to deal with crushing these stubborn little pills!

    Thank you for any advice!

  2. Slayadragon

    Slayadragon New Member

    You don't need to take perfectly consistent doses from day to day. The folates seem to remain in the body for a couple of weeks (at least), and so taking a little less some days and more others isn't going to matter that much.

    The doses are low because for those of us who need this stuff, our bodies will go crazy using it as soon as it gets some. The fact that my body put such a big priority on detoxifying as fast as it could once I took a tiny dose of that stuff is the most convincing evidence that I have that whatever that gunk in my body is, it's really important to get it out.

    I personally got more sick as a result of the methylation support (just folates and B12) than almost anyone on the board. (I'm in the "adverse effects" section of Rich's paper.) I've nonetheless come to the conclusion that taking large amounts of the supplements at the beginning wouldn't have hurt me permanently. If you want to go through a really hellish experience in order to get to the other side, taking large dosages probably would be fine. I wouldn't recommend it though.

    Did you ever consider the issue of toxic mold? I'm currently of the opinion that those people who cannot handle antibiotics and/or antivirals may have this problem. That certainly was the case with me anyway.
  3. Dlebbole

    Dlebbole New Member

    Hi Finch, I too am just about ready to try the protocol. MY obsessive/compulsive nature is to try to learn the biochemistry well enough to teach it before I start.

    I plan to order the supplements on Monday, but I plan to take the smallest possible dose. During my long history with this illness I have had to be very careful with all supplements and medicines. So I will grind up one tablet and take about one grain of sand's worth!!!

    I am finally able to live a "half life" of sorts. I work part time and there is no way I want to give that up if I can help it. My job has meant everything to me in the last few years. Anyway, best of luck to you; I will try to follow your progress. DE
  4. marti_zavala

    marti_zavala Member

    I am on Step 1 of the comprehensive. Going very slowly because I want to learn the protocol first, too.

    The B vitamins are bio-activated and therefore much more potent than regular B vitamins, B1, B6 and the folates are the ones I am referring to.

    Detoxing seems to happen quickly and takes a little while to slow down.

    I recommend taking the supplements that help soften detox a little. Activated charcoal/magnesium flushes, GABA, l-theanine. There may be a couple more. Then you have a game plan if the detox becomes too much.

    Also, I would document how you feel right now and call that your baseline. Then if you start detoxing and don't feel quite right (cognitive ability goes down for me when I detox) then you an review your "baseline" status and determine how far you are from baseline.

    It is common to start and stop the supplements to control detox. So don't feel like you are regressing if you have to slow down or stop.

    The doses are low because of the bioavailabiity. The doses of the Neuro multi vitamin are low because they have some of the folates and some other things that may not be good for all genetics (it is supposed to support methylation) that is my take, but I might be wrong.

    Good luck,
  5. tooks

    tooks Member

    Glad you are trying it and hope it helps. I too had been taking quite high doses of vitamins and supplements for years. But it has taken 6 months to workup to a half tab of each of the folates and one each of the others--with several stops of a week or so to calm down the detox.

    My current strategy with the crumbly folate pills is to grind a few days supply, put them in a baggy and use some tiny measuring device to measure out my dose.

    When the methylation cycle starts building up again so does the long dorment detox system, and believe me, it will find lots to try to clear. That can be unpleasant or awful depending on the rate you do.

    Having said that, good luck--it works!
  6. Diva55

    Diva55 New Member

    Just a note on the Folates - you should NEVER take more than 1/4 of those. This is stated in the protocol and reinforced by Yasko. They are powerful things!

    You can go up to 2 of the Multis but do it slowly as these cause detox as well in combination with the others. I personally never went more than one of those.

    The only thing you might want to increase very slowly will be the Perque B12's & possibly add in other forms of the B12 (not Methyl).

    The pill cutter method crumbles the pills but as you know the does can be uneven. I wouldn't bother with further crushing them just divide the cut pieces.

    As someone stated it doesn't matter as it evens out over 4 days.

    The doses have been worked out by Rich & I'm surprised that people are taking 1/2 or even a whole of the folates as that upsets the balance. Ignore the serving size on the bottles.

    Good luck with the protocol.

    Best wishes

  7. Slayadragon

    Slayadragon New Member

    I'm taking 1/2 a pill of the FolaPro and 1/2 a pill of the ActiFolate. I actually am not convinced that I need the folinic acid...perhaps I'm one of those people who can do the folic acid to folinic acid fine, but can't do the one from folinic to the active form.

    Anyway, I would think that as we reach wellness (e.g. get all the toxins out), we should be able to take ordinary doses of the pills.

    I'm at or approaching 100% on most days now, at least insofar as I keep using the Vitamin C IV's to wash the "top layer" of toxins (perhaps mostly mold poison, which may or may not be affected by the methylation process) out of my body.

    It's taken me a whole year and some really intense experiences to get here though.

    I started with about 1/32 of each of the pills though. I crushed them and then just used the smallest amount that would cling to a moistened fingertip for a while.

    The pills are smaller now, and so if you just purchased them I don't think there's be any way to put them in a pill splitter. Crushing seems the only way.

    I'm just rotating the pills now, so that I'm taking one FolaPro every other day and one ActiFolate on the other day.

    So there is an end, I think! And my upfront detox was enormous.

    Very potent and effective stuff, for those who need it. I think it's worth it for everyone to give it a try.
  8. deliarose

    deliarose New Member

    is to be conservative with the dosages because the protocol will reboot your detox system and your immune system and if you have a large body burden of toxins and viruses/bacteria from years of illnes, you can feel pretty crumby once that starts.

    Also, the different folate pills compete for transport ..hence the equal dosages.

    Having said that I took full pills of the folates from the get-go for about 8 months. It was a full-on experience, but I wasn't working or taking care of kids or doing just about anything....

    In retrospect, I don't know how wise that it is. I assume that the body can only eliminate so many toxins in a 24 hour there's no point in mobilising toxins you can't purge..

    If that's true, you'd be feelign bad for no reason.

    Also, it makes more sense to be consistent, than do full pills and then take 2 weeks or 2 months off ...because you get fed up of feeling lousey.

    The keys are :how much detox can you tolerate, and how much can your body physically detox on a regular basis?

    Also, I think it makes sense to use charcoal if you're getting that early morning nausea feeling, but it may be a trade off because it may also pull minerals from your body.

    That's where teh longer yasko program comes in with regular UEEs to monitor essential elements.

    I can;t see the point in sweating the quantities. Get a pill cutter and do your best. It's not rocket science!

    Just my 2 cents. Not an expert on anything.
    [This Message was Edited on 06/08/2008]
  9. fincher

    fincher Member

    Thank you all for the great tips and support. What I did last night was just take a spoon and guess at the amount that would be about 1/4 of the tablets. I'll get used to it. I like the idea of smashing some ahead of time and keeping them in a plastic bag. I also might just try the method of using the crumbled bits at what looks like close to 1/4. I'm glad it doesn't have to be exact.

    Diva - I've been using the sublingual methylcobalimin with the combined antibiotic protocol, and I thought it was helping me get through the day. Is there a reason it should be avoided? Also, is it better to take the Perque at night with everything else, or can it be helpful to use it in the morning?

    I'm so used to detox! Everything I've been given to try involved detox. Through the FFC, I've been on pretty much everything they could throw at me, and I was always told I'd feel worse before I feel better. The problem was that the better never came. I did anti-viral, and I did anti-yeast. The FFC believes in throwing everything at you at once, so it's hard to tell what helps and what doesn't.

    Now, with the combined antibiotic protocol (CAP), the issue is the same with die-off of the c. pneumoniae bacteria that the program is designed to eradicate. I don't know whether it's a brilliant idea to combine these two protocols, but I'm at a point with the CAP where I don't want to stop - I'm still building up to the full dose of the antibiotics - but I'm also not feeling any improvement.

    If the simplified methylation protocol can help, it's definitely worth it. It's really much easier to follow than all the supplements I was using with the CAP, and I'm cutting the CAP supplements back to just the basic ones that are required. Both my doctors thought there were too many antioxidants going on with that protocol. The essential supplements with the CAP are N-acetyl cysteine, Vitamin C, Vitamin D3, Vitamin B12 (which I can get with the Perque), and Vitamin B Complex. I'm also using Coral Calcium and Jarro-Dophilus. The antibiotics are doxycycline, azithromycin, and monthly "pulses" of Flagyl.

    My symptoms now include scratchy throat, burning eyes, brain fog, heavy fatigue, post-exertional malaise, orthostatic intolerance, unrefreshing sleep, headaches, muscle pain, joint pain, GERD, and stomach pain. Of course, how can you tell the die-off from the ME/CFS? The symptoms are all the same.

    What type of detox symptoms do people experience with the simplified methylation protocol? Is it basically an exacerbation of symptoms you're already experiencing? I do need to keep working, which has become quite a problem lately, but I'm used to it, so I should be able to make it through whatever I have to go through. At least I have some hope that I may find some level of recovery once I get through that. Since I've been feeling basically lousy for the past two years and for much of the 15 years before that, I have gotten pretty used to it, but lately it's been even worse and harder to take. My great fear is that I'll push too hard through this and end up in a bedridden state. I've heard of that happening to too many others after being ill for this many years, so I am trying to be careful outside of my job, which really is not heavy duty or stressful. It's just having to put in the time that is hard.

    Thank you again - so much - for all the quick answers and tips! I really do appreciate it!

    ~ Finch
  10. Forebearance

    Forebearance Member

    Good luck, Fincher!

    I can only echo what everybody else said about starting slowly and being cautious so you don't detox too quickly.

    When I began this protocol, it took me a while to figure out the correct doses of things for me. At first I overdid it, and it was pretty awful. That made me more careful.

    It's wise, DE, to take smaller doses than the recommended ones if you know you are often sensitive to supplements. I did that, too.

    To describe what the detox feels like, to me it felt both better and worse at the same time. I slept better, started getting thinner, and was able to go off my DHEA supplement.

    I also felt more tired, had a stomach ache at times, and diarrhea at times. It helps to stay close to a bathroom until you know how it's going to affect you.

    My nickname for the protocol is "excrete your way to better health".


  11. fincher

    fincher Member

    To answer your question about the antivirals - I wasn't hesitant at all to try them. The doc told me I'd probably have a die-off reaction, and I probably did, but as I said, they hit me with everything at the same time. At the time the antiviral was prescribed, my EBV titers were very high, so I was glad to go on it thinking it might be a big part of my problem. If I remember correctly, Valtrex was the antiviral I used, and I used it for about 3 months. I didn't actually notice any reaction whatsoever from it, either negative or positive. I've not had my EBV titers rechecked, so I don't know what effect it may have had.
  12. fincher

    fincher Member

    Wow, you made me go into the archives for that - it was over a year and a half ago, but I found it amazingly quickly! The dosage was 1000mg once daily. As I said, I didn't respond to any treatment so far, so that's why I'm still searching. The only response I actually did have was to the T3 thyroid replacement. The doctor kept increasing the dose, and it got too high. My thyroid levels got really messed up. I haven't taken the thyroid replacement since, although I thought maybe at the low dose I started with, it was helpful. It caused atrial fibrillation, though, so nobody wants me to take it anymore. Again, that was a year and a half ago, and I'm not sure if it was actually helpful or not, just that it turned out badly.

    ~ Finch
  13. marti_zavala

    marti_zavala Member

    I am also surprised at a low dose such as 1000mg per day.

    I did not respond at that level but I did responding - beautifully and wonderfully at 3000mg per day for 1 week.

    My insurance won't cover it so I take acyclovir. I am now at 800mg per day down from 1200mg.

    I can't/wouldn't live without it.

  14. fincher

    fincher Member

    I never realized 1000mg per day was a low dose. I guess that might be why it didn't help!