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Freddd - have increased energy on your protocol!

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Mary, Apr 14, 2011.

  1. Mary

    Mary Senior Member

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    Freddd - As I posted earlier, I'm one of the ones who had a bad reaction to the simplified methylation protocol, but stuck with it off and on for almost 4 years, attributing negative symptoms to detox, as I know is very familiar to you.

    Okay - so - about 4 days ago I cut out anything that has folic acid, I stopped the methylation protocol supplements, I stopped taking NAC and l-glutathione.

    And this is what I started:
    carnitine fumarate, 2000 mg. a day (I had been taking acetyl-l-carnitine for several years with no apparent benefits)
    Source Naturals dibencozide (1 lozenge a day)
    Methyl B12 shots, 5,000 mg. 3 x week (I've been doing this for quite awhile with no noticeable benfits, but am keeping on doign it)
    Jarrow Methyl B12 lozenges
    Solgar Metafolin - 400 mg. 2 x day
    Now Brand Nutritional Yeast for B vitamins
    Country Life Total Mins - mineral supplement with potassium

    And my regular stuff of CoQ10, magnesium, etc.

    I feel more normal, stronger, like I used to feel a very long time ago. I'm taking it easy, only pushing things a little as I don't want to crash, but I am truly amazed at the difference in how I feel. I never thought I would feel this way again.

    A few times in the past a couple of supplements have given me increased energy for several days (NADH, l-carnitine, malic acid, calcium pyruvate), but only temporarily, so I am hoping that this will prove to be more than temporary.

    It just blows my mind that something as simple as changing the form of folate can have such a big effect but it makes total sense that a chronic B12 deficiency could cause severe fatigue.

    So THANK YOU FREDDD!!!!!!! I can't tell you how grateful I am for your generous sharing of your knowledge. I'll post more in a couple of days or so to let you know if I keep improving.

    Mary
  2. aprilk1869

    aprilk1869 Senior Member

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    It's good to know you're doing well. However I thought I should point out that the nutritional yeast has added B12 in it. Usually when they don't specify the type of B12 it's cyanoB12.

    Also, the Total Mins has l-glutamic acid in it. I think that this can be a problem for a number of people as it can lead to glutamate exitotoxicity.
  3. richvank

    richvank Senior Member

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    Hi, Mary.

    I'm so glad that Freddd's protocol appears to be working for you! My hat is off to him, too!
    I'm also very sorry that the Simplified Treatment Approach did not work for you, and that so much time was lost in trying it.

    There are several differences between the two protocols, probably the most significant ones being the forms of B12 used (hydroxocobalamin vs. methylcobalamin and adenosylcobalamin) and the forms of folate used (methylfolate, folinic acid and folic acid vs. methylfolate alone).

    As you may know, in our clinical study of the Simplified Treatment Approach, over two-thirds of the patients experienced benefit, but about one-third did not, and I have been very interested to try to understand why. Perhaps some of this one-third would have benefited from different forms of B12 and folate.

    There have been a few people who have reported that they could not tolerate the protocol recommended by Freddd, but that they did better on the Simplified protocol. It would be helpful if we could quantify what fraction of PWC's do not do well on each protocol, and also to figure out how to predict which would work better for a given individual, so time and money are not wasted on a protocol that will not pay off for the person.

    I think these differences must result from genetic differences between people. I note that in the full Yasko treatment approach, from which the Simplified approach was extracted, genetic polymorphisms are characterized, and the form of B12 is selected based on polymorphisms.

    I am in agreement with Freddd that the use of folic acid is best kept to a minimum in protocols to support the methylation cycle (even though one such protocol uses high-dose folic acid as its exclusive form of folate), because it competes with the active forms of folate for absorption, and because it uses NADPH, which may be in short supply in PWCs, for its chemical reduction to useful forms of folate. I have recently modified the Simplified protocol to lower the amount of folic acid in it, retaining only the amount that is in the Yasko multi, which is still part of the protocol.

    Though I'm not happy that the Simplified protocol was ineffective and wasted your time, I am happy that you found a better treatment for your case, and I also think that your experience is going to help us to better understand how to help others more effectively. Certainly I'm going to let others who have not had a positive response from the Simplified protocol know about your experience. Please keep us posted on how things go for you.

    Best regards,

    Rich
  4. Mary

    Mary Senior Member

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    Thanks, April -

    April - Thanks for the info, but so far so good. I know there are a couple of B complex products out there without folic acid and hopefully with teh Methyl B12 and may switch to one after the nutritional yeast runs out. I don't think I have a problem with glutamate excitotoxicity, but will keep this in mind too.

    Mary
  5. dannybex

    dannybex Senior Member

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    Hi Mary,

    That is indeed very good news -- very encouraging!

    I'm curious -- you said you had no noticeable benefits (or negative effects) from methyl-b12, even in 'shot' form. I'm wondering if you had a history of toxic exposures -- mold, pesticides, solvents, heavy metals (mercury?)...?

    Thanks in advance,

    Dan
  6. Mary

    Mary Senior Member

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    Hi Rich - You know, although of course I wish I had known about Freddd's protocol 4 years ago, I don't consider the time I spent trying the methylation protocol as wasted. It was the only game in town - I had tried everything else. The doctors couldn't do anything. So although difficult, it gave me hope, just a little misguided in retrospect.

    I'm really glad to hear that you'll let others who don't respond well to the methylation protocol know about my experience. And I will post how I continue to do. I remember too well the other things which helped me only temporarily, and hope that this is not a one-trick pony! (or however that saying goes)

    I put a post directed to you on the PH board about this, but am glad to hear from you here.

    I do appreciate all you do for all of us!

    Best wishes,

    Mary
  7. Mary

    Mary Senior Member

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    Hi Dan - I did have heavy exposure to chemical solvents (acetone) when I was 19 (I'm now 59) at a factory I worked in. We washed our hands in it, breathed it etc. About 9 years ago I did a liver detox which helped I think getting rid of some of that. Before I did the detox, one glass of wine would make me sick for an entire day and afterwards, no problem. I also started taking milk thistle and HCL with meals.

    I did have several mercury fillings which were removed 10 or 12 years ago. I didn't notice any difference after removal.

    So I'm just guessing that it's the metafolin that is helping me actually use the B12 I've been taking all along (plus the added ADB12). I don't really know, to be honest. I really want to see if this lasts, because I've had temporary benefits before from different things, but nothing lasting. And of course will be curious to see if I have more stamina before crashing, or just what the heck happens in regard to crashing. But am taking it slow for now .... I'll keep posting how it goes -

    I was born in Seattle, by the way, but moved to So. Cal. when I was 10. We lived on Capitol Hill. It's a beautiful city!

    Mary
  8. anne_likes_red

    anne_likes_red Senior Member

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    Mary, I'm so pleased for you! I hope this improvement will hold for you. Make sure you update :))))

    I started L carnitine fumarate several days ago (on top of the simplified protocol, good co-factors, less some folic acid and plus some MethylB12) and adding in the Lcf seems to have made a big difference to my energy levels. Probably 20% of improvement in just a few days. I haven't reacted this positively to a single supplement before.

    So I want to send Freddd a big thank you too, for recommending L Carnitine Fumarate. (School holidays start tomorrow and this extra energy is VERY much appreciated!!)

    Anne.


    PS Dan, I have mcs - and I had pesticide exposures. I rode my bicycle past orchards when I lived in the countryside and I got sprayed more than once. Plus I used naphtol dyes every day in my work. Anyway, I'm OK with 1000mg MethylB12.
    I did have treatment for pesticide exposure (HBOT) in 1997/98 so perhaps I'm less toxic than I otherwise would have been? I've also had chelation therapy (DMSA). I'm taking taurine and molybdenum for sulfation and I had a more severe reaction (detox type reaction) to starting those I think. Naphtols require sulfation as far as I know, so perhaps I had collected some toxins through using the dyes when already unwell?
    I do seem to be getting increased inflammation, more extreme bouts of tiredness, and increased swollen glands as a result of starting B12s and folates but I'm hoping that will improve.
  9. Mij

    Mij Senior Member

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    Freddd, is there a reason you prefer l carnitine fumarate? I took acetyl-l-carnitine with R+ lipoic acid on and off for years and find it helpful. I need to reorder more and I'm trying to decide whether I should try the l carnitine fumarate now.

    thanks
  10. Mary

    Mary Senior Member

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    Hi Anne - I will update. That is interesting about the L carnitine fumarate helping you so much - that's what happened to me 9 years ago when I first took l-carnitine, I had a wonderful increase in energy, but it only lasted about a week. I really can't tell right now what is helping my energy the most, the Lcf or the metafolin or the ADB12, because I started almost all of them at the same time (I know, you're supposed to do one at a time, but what the heck). And also stopped all folic acid and folinic acid at the same time too. At this point I don't care, just want my energy to continue.

    I hope your energy increase continues!

    Mary
  11. Freddd

    Freddd Senior Member

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    Hi MIJ,

    I prefer the l-carnitine fumarate as it works very well, knocked my socks off for 6 months on startup. Acetyl l-caritine did nothing at all, put the socks back on and cement overshoes too. If it is used in combination it negated the l-carnitine fumarate. The fumarate is the specific variety for transporting the fats into the cell for the Krebs cycle with adb12 producing ATP.
  12. Freddd

    Freddd Senior Member

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    Hi Mary,

    In all likelihood it isn't any one thing, but the combination. It is very important to start exercise, at a low level and build up a bit each day. The muscles need stimulation and usage to heal and grow more mitochondria. Glad to hear it is going well. Now comes the hard part, a modest exercise program without overdoing it and causing a crash. I started walking and increased the distance by one driveway a day. That is about 75 feet in the area I lived in. In 100 days it was an increase of a mile and a half. In a year I was up to 5 miles without ever overdoing it. Then I was able to accelerate it.

    I can't overstress that need for potassium with a strong response like this.
  13. Freddd

    Freddd Senior Member

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    Hi Anne,

    An increase in the inflammation that then fades is pretty normal in this. Again, with cell formation kicked off I can't over stress the importance of potassium at this point to avoid problems.
  14. Rockt

    Rockt Senior Member

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    Freddd, not sure about the best way to add in potassium. Do you just take it occassionally or do you take it regularly?
  15. leaves

    leaves Senior Member

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    Fredd when i started methylfolate I started dreaming again. Folate stopped my dreaming. I stopped al folate and at first I dreamt, but no longer.. What could it be? I have the idea that higher methylb12 stops my dreaming. My bloodlevels b12 are also insanely high. Could it be that b12 is not the limiting factor for me?
  16. madietodd

    madietodd Senior Member

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    Mary -

    I'm about to start the simplified methylation protocol, and if it doesn't work, what you're doing will be my next experiment. So please keep posting about what happens.

    Madeleine
  17. Mary

    Mary Senior Member

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    Hi Freddd - I do plan to start very modest exercise in the very near future. I don't mind at all how slow I have to go, as long as I can go. I just had an annual physical today, the only interesting part was where they measured the oxygen in my blood with a pulse oximeter - it was 99. The nurse was surprised, it's a good number. I had bought a pulse oximeter several months ago in desperation, wanting to see if low oxygen was causing my exercise intolerance. It was in the normal range then, 95 or 96, but it has gone up now and I'm figuring that my body is finally starting to be able to properly utilize B12. I know I'm extremely out of shape (no real sustained exercise for 13 years) but looking forward to being able to move again.

    I am taking a mineral supplement with potassium in it. How do you know when you need more potassium?

    Mary
  18. Mary

    Mary Senior Member

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    Update - well, I crashed yesterday, my regular CFS crash, still recovering today. I only did a little bit extra than I usually do. So it appears my stamina has not increased, although I felt better.

    I don't know if I'm back to square one or not. Am going to continue with Freddd's recommended supplements and just see what happens. It's rather discouraging, to put it mildly. I would give anything to know what's going on.

    Mary
  19. richvank

    richvank Senior Member

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    Sorry about that, Mary. I guess you'll just have to give it some more time and see how it goes.

    Rich
  20. leaves

    leaves Senior Member

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    Same here...

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