Slow but steady improvement w/ methylation protocol

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Sep 8, 2009.

  1. mbofov

    mbofov Active Member

    Although I started the methylation protocol over 2 years ago, I was not able to follow it for most of last year because I was sick so much. The protocol makes me detox, no question about it, and if I’m sick, I can’t handle detox symptoms on top of it. I started taking a thymus gland supplement a few months ago and now get sick much less frequently so have been able to restart the protocol. So I wanted to make it clear that the results I’ve obtained were not due to faithfully following the protocol for over 2 years. With all the starts and stops, it’s actually much less time.

    When first starting the protocol, I had a very rough time (severe constipation for about 10 days) until I learned to take smaller doses, every other day, or even stop altogether for several days. Going slow was essential.

    My chief improvement is in the nature and duration of my crashes (post-exertional malaise, or PEM). It used to be when PEM would hit that I felt like I had been hit by a truck (an 18-wheeler) after climbing a mountain, when in actuality I might have spent 20 minutes too long at the library. My poor body didn’t know what had hit it. Anyways, when I crash nowadays, the symptoms are much lighter, much fewer aches, the exhaustion does not feel as bad. I still have to be immobile, still can’t do anything until the crash is over, but I just don’t feel as bad while not doing anything as previously.

    The other thing is, my crashes now last 1-1/2 to 2 days, as opposed to 3 to 4 days. This is huge for me as well. I still get sick when I crash, but not as sick as before. Often it would take me 2-4 weeks to get over a crash after factoring in time spent getting over being sick, as I got sick with every crash.

    Unfortunately, my stamina has not improved yet. I still crash rather easily, have to ration my energy carefully, but I’m just hoping that before too long I’ll see improvement in this area too. We’ll see.

    Prior to starting the methylation protocol, I had seen no improvement in PEM since I first started crashing eleven years ago. I had made great strides in improving my digestion with digestive enzymes and hydrochloric acid and a liver detox, and sleep was improved after getting my cortisol levels down with Seriphos, but the crashes were killer.

    For those of you considering the protocol, read Rich’s posts on it.

    A few other things that help while doing it:

    a good B vitamin complex - I switched to a liquid form which is better absorbed
    I added free form amino acids at Rich’s suggestion
    activated charcoal for getting toxins out

    I’ve also recently added in 200 mg. of Sam-e and two 500 mg. capsules of l-methionine.

    Also, it was very helpful to me to get the Vitamin Diagnostics test done that Rich recommended, for it showed that I do have trouble methylating properly and was encouragement to keep on with the protocol.

  2. mbofov

    mbofov Active Member

    Thanks for your kind wishes - I hope so too!

  3. Forebearance

    Forebearance Member

    Hi Mary,

    I'm so glad to hear your report!

    And I'm so glad to hear that you are getting some good results from the methylation supplements. I had to temporarily stop mine while I was traveling, and now that I'm home, I can't wait to start them up again.

  4. richvank

    richvank New Member

    Hi, Mary.

    I'm really happy to hear that you're making such good progress! That's wonderful!

    One more thing I've learned lately is that some people are pretty low in zinc, and zinc is needed as a cofactor for a couple of the enzymes in the methylation cycle. So that might be another thing to consider.

    Best regards,

  5. mbofov

    mbofov Active Member

    Thanks for all your good wishes! Forebearance, glad you made it home. Rich, I do take a zinc supplement already but thanks for the suggestion.

    Nice hearing from you all -

  6. zipk

    zipk New Member

    What type of free aminos do you recommend? Any particular brand?

  7. mbofov

    mbofov Active Member

    I buy Now Sports Amino Complete. I remember a few years ago someone recommended this brand. I think it's one of the cheaper ones, I'm not an expert but it seems to be good.

    Both and carry it. Whoops - I just looked and Swanson Vitamins now has it (they didn't use to).

  8. AuntTammie

    AuntTammie New Member

    I am glad that it's helping you....have been seriously considering trying it, but have not yet for a few reasons (related to doctor issues, cost of testing, etc)
  9. mbofov

    mbofov Active Member

    I was on the protocol for close to two years before I did the Vitamin Diagnostics testing, because of the cost. ANyways, finally decided to bite the bullet and pay the $300 for the test, and it just confirmed I was on the right path.

    The supplements are relatively inexpensive - they last a LONG time because you take such small doses. If you start detoxing on the supplements (which I did right away), then it can be an indication that you do have trouble methylating.

    One more marker I discovered for problems methylating was on my standard CBC blood test. My doctor just told me about this in June - I'd never paid attention to this before. My values on MCV (mean corpuscular volume - size of red blood cells) and MCH (forget what this means) were both high normal, near the top of the range. Large red blood cells can be an indication that you are deficient in folate or B12 - all related to the methylation cycle. So check an old blood test. There may be more information there than you realize.

  10. Diva55

    Diva55 New Member

    Hi Mary
    So pleased you are doing well on the protocol. I too cannot afford the testing but I was interested in what you said about the blood values as my MCV & MCH are always at the high end of normal.

    My doctor had said not to worry about high values for MCH as MCV is the key one - but of course I could'nt follow his reasoning & what the codes actually meant! I'll try & get this clarified next time I see him.

    I started the protocol in 2007 but I was off it for a long time due to other health concerns. The health problems also meant I have stopped & re-started many times but I have been on it this time for mostly 6 months.

    Like you I'm seeing some glints of improvements although of course it can take a step backwards as well due to having FM & chronic IBS thrown into the mix.

    Best wishes to you & hope the improvements speed up
  11. hubcap_halo

    hubcap_halo New Member

    I'm glad to hear the protocol is helping. Rich is one smart guy.

    And I think it's great he recommended amino acids.
    I had labs done and was shown to be very depleted too.

    Can I ask what brand amino acids you are taking?


  12. mbofov

    mbofov Active Member

    Your experience sounds very similar to mine, I had to stop for a long time also because of getting sick so much. Interesting that your MCV is high normal as well.

    I'm sure it's more difficult for you with FM and IBS thrown in. I've read a lot of people with IBS get better when they cut out gluten or find other food sensitivies - have you checked this out?

    I did learn several years ago that I needed digestive enzymes with hydrochloric acid - my digestion was a mess until I started that.

    Best wishes to you too, and for continued improvements!
  13. mbofov

    mbofov Active Member

    Actually the full name is Now Sports Amino Complete - you can see different places to buy it in my response to zip above. It's one of the cheaper ones.

    I am very grateful to Rich for all his research and his unending willingness to share his knowledge!
  14. hubcap_halo

    hubcap_halo New Member

    Sports Amino Complete. I will try it.

    A doc here in the DC area had me on several amino supplements, very fancy brands and it was crazy expensive.

    I wish you even better health,
  15. AuntTammie

    AuntTammie New Member

    thanks for your response to me - interesting info, I will have to pull out my most recent blood test results
  16. Diva55

    Diva55 New Member

    Hi Mary
    Yes we do sound similar on our protocol journey!

    I'm under the care of a Gastro Dietician who is wonderful - she doesn't believe in drugs for IBS.

    I've tried lots of elimination things but we both came to the conclusion that strong probiotics are helping the most.

    However, she & her some of her fellow dieticians in the (UK) NHS now believe that PREbiotics are better than PRObiotics. So I'm doing a trial with Inulin & more prebiotic foods.

    I'd be very happy if Inulin helped as it's very cheap & so I could cut back on some of the very expensive probiotics but of course will keep the most helpful brand in place.

    I tried digestive enzymes a while back & didn't feel good with them so stopped. I might consider introducing them in future.

    I do consider getting the gut in shape is inportant when dealing with the Methylation cycle.

    Best wishes

    ps. Nice to see Hubcap again - I was wondering how you were doing
    [This Message was Edited on 09/12/2009]
  17. mbofov

    mbofov Active Member

    Well, actually, 2 more things - one, I'd never heard of Inulin or prebiotics before. Sounds interesting -keep us posted how they work.

    The second thing is, for me, digestive enzymes alone were not enough - I had to add in hydorchloric acid, so took a supplement which had the enzymes and the HCL. In your post you say you took digestive enzymes but if you didn't have HCL as well, it might not have been enough.

  18. Diva55

    Diva55 New Member

    Hi Mary
    PREbiotics are the things that stimulate your good bacteria to make them increase - so they can fight the bad bacteria.

    PRObiotics work on the premise that they add to the good guys. But when your get probiotics in food they are mostly destroyed by the gastic acid before they get a chance to get to the gut where they are attacked by the bad guys.

    Anything like yogurts & those probiotc drinks don't stand a chance as they are heat treated which destroy probiotics anyway! As my dietician said they are a waste of money.

    Enteric coated probiotics stand a better chance of getting to the gut so more strains in the probiotics the better.

    With PREbiotics they are not under so much attack & can get about their work of stimulating the growth of the good guys which then fight the bad guys.

    Inulin is a powdered form of prebiotics. I think they add it to some foods as well. I just sprinkle it on cereal. It tastes a little sweet.

    My stomach when IBS was bad was like a solid football. It's now smaller & softer. This is down to the enteric coated probiotics & I believe is also being helped by the Inulin which I've only been taking a week. I've not had any IBS attacks in this week which is great.

    Anyway lecture over - hope that helps a bit as I'm not good at explaining what the dietician said.

    I did try both Papaya as a digestive enzyme & also Betaine HCL & I believe it was the Betaine which was the problem. I think it contains Bromelain (Pineapple) which I'm extremely sensitive to!

    Best wishes

  19. Diva55

    Diva55 New Member

    Hi Mary
    I meant to say I read (I think) on Cort's board that Yasko doesn't advise HCL. I think it was DeliaRose who wrote that & said it was advised to have lemon juice instead.

    Sorry it's so vague but that's all I can remember & can't find the post at the moment.

    Best wishes
  20. lbconstable

    lbconstable New Member

    Good news Mary! It's nice to hear how you're doing. Good wishes for you continued improvement!

    I haven't been doing the protocol much for over a year. I continue with 1/4 tab of Folapro when I remember. I continue to do really well, though. Even under a heavy work load and a fair amount of stress!

    For me digestive health is a key element. I'm interested in the prebiotic concept that Diva brought up.

    Anyway, good to see some familiar friends here!