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Methylation Protocol for Mild CFS?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Sherpa, Aug 5, 2014.

  1. Sherpa

    Sherpa Ex-workaholic & adrenaline junkie

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    Over 3 years, with careful diet and supplement work and graded exercise... I have improved from severe AFS (adrenal fatigue syndrome) / CFS to mild CFS symptoms

    These days, I'm feeling more good than bad. I currently have excellent sleep and great cognitive function.. few symptoms.. unless I overdo it... then I get PEM, fibro pain, sleep problems.. which clear up after a day or two of taking it easy.. But with careful rest and pacing, I feel good most of the time. I work almost full time but I still suffer from not being able to live a normal life, make friendships and dating and feel like I'm on "house arrest" on the weekends.

    I currently take Energy Revitalization System (multivitamin containing folic acid & cyano), d-ribose and thyroid glandular. It works to boost but doesn't seem to fundamentally cottect the underlying cellular dysfunction.

    Does a methylation protocol sound like a good fit for my mild CFS or is it only for very sick people?


    Thank you very much for reading and/ or responding.
     
    Last edited: Aug 9, 2014
  2. Critterina

    Critterina Senior Member

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    @Sherpa ,

    Methylation supplementation can help a lot of things, not just people with CFS. It all depends on what is causing what is wrong with you. I'd like to say "it can't hurt" but there are a few people who have been adversely affected by what they have taken. So, might it help? Yes. I would say likely. Is it risk-free? No. But I would definitely look for a replacement for your folic acid and cyano (which I assume is cyanocobalamin), as a good number of the population can't convert these to the active form, and they tend to be the people with CFS.

    I'm glad to hear you've made so much progress. Let us know what you decide, what you do, and how it goes.

    Crit
     
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  3. Sherpa

    Sherpa Ex-workaholic & adrenaline junkie

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    My best guess is that I have an acquired glutathione deficiency and a functional B12 deficiency - based on my positive response to NAC, whey, glutathione & B12 supplements.

    I am going to assume that - since my condition is pretty stable... If I doesn't work out, I can always go back to my current regime. It works now. should work if I ever had to change back to it.

    For the first step I am going to try going off the Energy Revitalization System multivitamin (contains NAC, Folic acid, whey). The nearest possible replacement for it I have discovered is one @adreno mentioned in another thread: http://www.iherb.com/Doctor-s-Best-...Vitamin-Mineral-Complex-90-Veggie-Caps/50548#

    I am currently looking at 3 protocols - Freddd's Active B12, Rich's SMP and Dr. Myhill's Protocol (http://www.drmyhill.co.uk/wiki/CFS_...yhill.co.uk/wiki/CFS_-_The_Methylation_Cycle). All these folks know an incredible amount about CFS and nutrition - and there are minor opinion differences, but the basic recipe (folate + b12) is similar.

    My current "hybrid" plan is:
    1. Replace my folic acid / CyanoB12 multivitamin & NAC with something "safer."
    2. Continue taking my thyroid & ribose to keep my equilibrium stable.
    3. Add phosphadatidyl serine (since it was helpful in the past)
    4. Slowly add sublingual Methyl B12.
    5. Slowly add more methylfolate, AdlCBL if tolerated.
    6. Microtitrate LCF, SAMEe or additional cofactors IF needed / tolerated.

    I am praying that methylation will improve my OCD (which is currently treated with NAC & inositol) and power up my sluggish mitochondria... upping my PEM threshold from "almost well most of them time" to "100% well."

    It would also be nice if methylation reduced my dependence on thyroid glandular and ribose (to create energy equilibrium). Has anyone reported that recently?
     
    Last edited: Aug 7, 2014
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  4. Critterina

    Critterina Senior Member

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    @Sherpa

    I like the way you plan things out. I believe that Step 1 and Steps 4 and 5 will be the same thing. When you replace the folic acid and cyanoB12, you will be replacing them with the methyl forms you mentioned, plus the adenosyl if you want.

    You are right about most of the formulas being folate + B12, but the forms matter, and depend on your SNPs. If you don't know them, it's trial and error, but as you say, you're pretty stable. Some people have reported losing ground, but I hope you are right that you can go back to what works for you now.

    Oh, yes, the OCD. Since you mention that, I would not get too high on the methylB12 without methylfolate. OCD is associated with the MTHFR A1298C (you see in my profile - it's not me but it's in my family). I think there is a good chance that the methylfolate will help that.

    Sorry, but I don't want to get your hopes up about the thyroid. That all happens through other pathways. But if you're the first, we will all cheer you on. Ribose is interesting...for a while I needed it with NADH to address energy and temperature/blood circulation issues. Now I just use it when I want to sweeten something without table sugar, stevia, or agave. Maybe the difference is that it's 90 degrees at 11 pm now instead of minus 5 at noon last February.

    One recommendation I would make: write everything down. Food, supplements, mood, anything that you think might remotely be interesting. When I did, I could go back and figure out what was really going on, not what I remembered.

    Best of health to you!

    Critterina
     
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  5. Sherpa

    Sherpa Ex-workaholic & adrenaline junkie

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    Thanks @Critterina!

    I can't tell you how much I appreciate your response. I have spent hundreds of hours online helping adrenal fatigue sufferers - it feels great to get some help back.

    I ordered the 23&Me genetic test. Hopefully it will provide some confirmation or evidence not to go too far in a wrong direction.

    In the meantime, do you know where I can read some methylation success (and failure) accounts from others? Other forums? I read something about a WrongDiagnosis forum with lots of methylation activity but it apepars to be gone.
     
  6. Phred

    Phred Senior Member

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    Hi Sherpa,

    I followed Fred from the wrongdiagnosis forum. Don't remember the path, but did wind up here. It was a very long thread. And I read all of it.

    It was started by a nurse who wrote a book: "Could it be b12: An Epidemic of Misdiagnosis." She was looking at blood serum levels, uMMA and I think homocystine. HOWEVER she was suggesting cyanocobalamin shots to help with the b12 deficiency. It wasn't until Fred showed up and started touting methylcobalamin as the superior form of b12 that she started to change her mind. Or at least concede that cyanob12 might not be the best. At least that's how I remember it. It's been a couple of years since I read all this.
     
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  7. whodathunkit

    whodathunkit Senior Member

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    @Sherpa: I've not been diagnosed with CFS and Freddd's methylation protocol has helped me immensely. I have a lot of other things wrong (adrenal dysfunction, hypothyroid, hormone problems, etc.) and it's helped all of them. I consider it a godsend.
     
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  8. Sherpa

    Sherpa Ex-workaholic & adrenaline junkie

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    Today is the second day I have taken 250mcg methylb12 sublingual. I feel energetic, cheerful, calm, bright, enthusiastic. It's a subtle but noticeable difference: I'd usually feel a bit depressed and tired after the workweek. I also noticed a significant increase in libido.

    Does an initial positive response to MethylB12 suggest a deficiency that can be corrected by methylation?

    I'm hopeful but don't wanna get too excited.
     
    Last edited: Aug 10, 2014
  9. whodathunkit

    whodathunkit Senior Member

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    In my case, it did. It seems in many cases it does. Does it in every case? Can't say. If I had to pick yes or no, I would say yes, based on what I've read and what I've experienced. But that's not an absolute answer.

    If you decide to try methylation and all the supplements that can go with it, be prepared for somewhat of a rollercoaster. You may get sicker before you get better, and you'll probably be faced with the choice of whether or not to reduce dosages or raise them in the face of some symptoms. For example, I had really good results with radically increasing methylfolate and mB12 in the face of some symptoms, per Freddd's "paradoxical methylfolate insufficiency" theory. Not everyone has the same results I did with dosage increase, although some do. Worth noting is I'd had some experience with healing crises in the past so wasn't terribly nervouse when I found myself getting pretty sick. Some people find the symptoms intolerable or become afraid they are doing themselves more harm than good because they feel worse before they get better.

    Doing methylation supps is a very personalized thing and it won't work exactly the same way or in the same dosages for everyone. My advice is to read a bunch of stuff on this board, esp. the sticky threads at the top of the Detox forum. There's a wealth of good info there.

    And then listen to your body. Do what you're comfortable with. But remember that sometimes to progress we must step out of our comfort zones. It's all your choice how to proceed.
     
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  10. Freddd

    Freddd Senior Member

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    Hi Phred,

    That was Sally (lost the last name) if I remember correctly. She was hot on HyCbl. The book is still available. As far as advice goes it is very outdated but as far as lack of good diagnosis, that is as valid as ever. The problem is that there are so many wrong diagnoses.

    I had diagnoses such as; It's All In Your Head, lying alcoholic, hypochondriac, conversion disorder, "too many symptoms to be believable, "Imaginary woman's disease" (CFS/FMS), conversion disorder, hypochondria, many neuropathies, interstitial cystitis, chronic Epstein Barr, Myofascial pain disorder, IBS, MCS, allergies, asthma and who knows what else, non of them predictive of useful treatments. B12 and folate deficiencies were "ruled out" as being possible causes. They sure got that 100% wrong by 100% of over 100 docs.
     
  11. Freddd

    Freddd Senior Member

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    I did an N=1000 questionnaire development study. The only people having a noticeable response were those that had a bunch of symptoms of the ones on the lists. Things that responded first were usually those things that improved first.
     
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