Peoples improvement on Methylation protocol

Discussion in 'Fibromyalgia Main Forum' started by neoplus1, Jul 26, 2012.

  1. neoplus1

    neoplus1 Member

    For those of you who are on the methylation protocol and have improvement or even recovered, what kind of improvement do you get? Whenever I read around it seems everyone always just talks about improvements in energy, but being that ME/CFS goes far beyond fatigue, what about the other symptoms such as pain, headaches, dizziness, weakness, vertigo, cardiac symptoms, malaise, flu-like feelings, other immune symptoms, etc?

    I am interested in doing the methylation protocol. I already have Methyl B-12 by Jarrow Formulas and will also get Hydroxocobalamin as well as Methylfolate and lecithin. My symptoms are not just fatigue, but many others as well. So if I do this, and it helps, I'm hoping that it would help more than just fatigue but all the ME/CFS related symptoms. All answers and opinions welcomed!!

    -Neo
    [This Message was Edited on 07/26/2012]
  2. richvank

    richvank New Member

    Hi, neo.

    In our clinical study of the methylation treatment, we asked the patients to rate their energy, freedom from pain, mental clarity, sleep and overall feeling of well being. The group reported significant improvements in all of them. You can read the report here:

    http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-2009VanKonynenburg-TrtMethylStudy.pdf

    If you are interested in the biochemical basis for expecting improvements in CFS symptoms in general from methylation treatment, you could watch the video or view the slides here:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}

    Note that you can get the slides by clicking on the blue print below the video.

    Best regards,

    Rich
  3. MicheleK

    MicheleK Member

    Hi Neo, I can feel an overall improvement after about 3 months now on the protocol. I feel stronger across the board. I went from bedbound to being able to socialize a bit. I've had a three week straight good time of activity. I rarely got a day here or there among many months, so this is like heaven.

    I will say that I also am on LDN also and the LDN helped with my orthostatic issues. I know that is fromt he LDN because I wasn't on the methylation protocol when the improvements began.

    I hope you get overall improvements too. It's such a simple things to take these supplements, and not costly at all. Win-win!

    Hugs, MicheleK
  4. neoplus1

    neoplus1 Member

    Thank you Rich and Michele for your responses. I did go over the study and it is very interesting. I would be very interested to see another larger study of a longer duration. It seems 6 months was not long enough given that by that time the improvements were still continuing and although the additional 3 months were not included, I'm betting the improvement continued. It was also interesting to see the large number of people who also had migraines and IBS.

    It's good to see how much improvement you have felt MicheleK. Going from bedridden to being a bit social is quite a leap. Unfortunately I can't take LDN because I am very allergic to it. I broke out in hives all over my body and my blood pressure dropped. Luckily there are lots of other options.

    Thank you both for your responses!

    -Neo
  5. neoplus1

    neoplus1 Member

    When I do start I plan to use microdoses. I do tend to be super sensative to supplements and medications. When I say microdoses, I mean microdoses such as 1/20, 1/50, or even 1/100 of a dose. Then very gradually up the dose little by little to avoid detox reactions and to slowly re-establish the blocked reactions. Hopefully I can avoid the issues others have had trying the protocol.

    At the very least I would love to have an overall modest improvement in all the symptoms. Even if only 20% improvement, if it were in all the symptoms, that would be a huge plus. I imagine if I did respond it would be more than that. We will have to see.

    -Neo
  6. richvank

    richvank New Member

    Hi, neoplus1.

    The last part of the video I cited earlier discusses an additional 3 months of the clinical study, and yes, the improvements did continue to be significant.

    Starting with low dosages is a good idea. Some people respond very strongly to supplementation directed at lifting the partial methylation cycle block.

    I hope it will go well for you when you try this protocol.
    As always, I recommend working with a physician.

    Best regards,

    Rich
  7. FaithHopeCure

    FaithHopeCure New Member

    Thanks for all your info that you have posted. I have been reading your posts and watching your presentations. I am beginning to believe this is a genetic issue for me and will start using the: Vitamin B-12 (as Hydroxocobalamin) which helps to detox metals. i have a family history of mental illness and they say that many scyzrophrenia patients have high levels of metals in their brain. So it is better to be safe and use the b-12 that detoxes metals. Also, I will begin using the metafolin folate.

    I have a question about phoshatidyl serene. My Dr. has recommended the phosphorlated serene. Why do you recommend the tidyl version?

    Neo-I will post here when I start using Rich's protocol. I have been using nearly all of methylation protocol supplements with about 75% improvement on most days. The days I don't sleep well then I suffer bad. So I am adding the seriphos (phosphorlated serene) to my regimen.
  8. neoplus1

    neoplus1 Member

    Rich- Unfortunately I will likely not have the supervision of a doctor. I do have an appointment with a Rheumatologist on August 2 and this will be the first time I am seeing one although I have seen many other types of doctors. After seeing him the diagnosis of ME/CFS will become official assuming nothing else is found. He is a very compassionate doctor from what I hear from my neighbor so he may be on board.

    FaithHopeCure- I hope you do post your progress although it seems as if you have made some excellent progress already as it is. 75% on most days is fantastic. That will be wonderful if I could get improvement like that for my symptoms. I probably won't start until after my appointment with the rheumatologist, but when I do I will likely post progress. Instead of phosphotidylserine, I am going to lecithin.



  9. neoplus1

    neoplus1 Member

    Three years ago when I really started to get bad, one of the blood tests I had before the doctor mention I may have ME/CFS was b-12. My B-12 was not only NOT low but was actually quite high, I believe around 1300 or so(whatever the units of measure are). Do you think this could actually be in support of using the methylation protocol? Maybe perhaps I am not converting it to the active forms and my body sensing this as low dietary b-12 was reducing my excretion. At least I read something similar to that. I also was NOT supplementing with b12 at the time or any time around that period.
  10. richvank

    richvank New Member

    Hi, FaithHopeCure.

    I'm glad to hear about your improvement.

    Seriphos is O.K. The reason for recommending phosphatidylserine complex is that it contains a range of phospholipids, not only serine. Thus, it can help to support the repair of cell membranes, and the phos. choline that is in it can support formation of acetylcholine, which is usually low in ME/CFS, as well as the choline being convertible to betaine to support the BHMT pathway, which is an alternative methylation pathway in the liver and kidneys. So the complex is just more versatile, but seriphos is a good supplement, too. It is particularly good for lowering cortisol if it is too high. Taking it at bedtime can help with sleep in some cases for that reason.

    Best regards,

    Rich
  11. richvank

    richvank New Member

    Hi, neo.

    High serum B12 is common in ME/CFS. The dominant part of the B12 in the serum is bound to haptocorrin, and has been exported by the cells. This B12 is not available to the cells of the body in general, but is absorbed by the liver after about a week. This is a salvage and recycle pathway. The "new" B12 that comes into the blood from the diet or supplements is bound to transcobalamin, and the cells in general can accept this B12.

    In ME/CFS, there is a functional B12 deficiency. This means that the cells are not able to utilize B12 normally. They are not able to convert it to the two coenzyme forms, so they just export it back to the blood, bound to haptocorrin.

    The cause of the B12 functional deficiency in ME/CFS is glutathione depletion. When glutathione becomes depleted in the cells, this drastically lowers the affinity of the CblC complementation group, which is part of the intracellular B12 processing pathway, for cobalamin.

    That's why a large dosage must be used, to compensate for this low affinity. Efforts to raise glutathione directly have not been very successful.

    The methylation treatments raise glutathione by first lifting the partial block in the methylation cycle that is caused by the functional B12 deficiency, and then glutathione rises automatically, relieving the B12 functional deficiency.

    We inherited this type of treatment from the autism researchers. Autism and ME/CFS are very similar biochemically.

    Best regards,

    Rich



  12. neoplus1

    neoplus1 Member

    I have to say that although this illness is terrible, it does peak my scientific interest. I was a biology major in college(although I did not get to finish) and ever since around Jan 2009(that's when I went very down hill after suffering already for three years), I have become so interested in the biochemistry of our bodies and complex illnesses such as these. There are a lot of biochemical theories floating around, all with their merits and seem to end up being intimately related. Thank you again Rich for all your brilliant input.
  13. FaithHopeCure

    FaithHopeCure New Member

    Yes, I have improved but I will have 3-4 days at 75 % improvement but then my pain and fatigue will return for 3 or 4 days. It seems to cycle this way. Now that I do have good days, I want more of them! If I can get consistent good sleep then I do much better. I will be doing the cortisol salvia test and adding the seriphos for sleep accordingly.

    Also, I will be adding more folate as your protocol suggests. My question is: Do I take metafolin folate by itself or do I take the folapro and intrinsi b12/folate combo? If I remember correctly, the metabolin folate is sufficient.

    I want to try this methylation treatment as closely as I can. All your research pulls everything together that I have been doing on my own.

    Looking forward to sharing even more and better results! Thanks for all your work and I love your grass roots approach to getting the word out....
  14. FaithHopeCure

    FaithHopeCure New Member

    I was looking at the Folapro by metronixs on th PH products page. I found your protocol and have a clear understanding of what to take. So I will be ordering and posting my new and improved results....
  15. neoplus1

    neoplus1 Member

    FaithHopeCure, do you sleep consistantly well? Do you think the 3-4 bad days that you have are a result of inconsistant sleep? Lately I have been developing a good sleep habit and surprisingly my symptoms have eased up a bit. Not just how much I sleep but what hours specifically I sleep. If my 8+ hours of sleep include the hours of 9:30pm-1:00am, then it helps. Last night I went to sleep after midnight but still got a full nights sleep and it didn't feel nearly as good.
  16. FaithHopeCure

    FaithHopeCure New Member

    Yes, the lack of sleep directly reflects the pain in my body. On a good night I will get 5 hours of straight sleep. I use large amounts of GABA and suntheanine, along with 5htp and fibro sleep that has melatonin in it. I started the GABA and was doing great for about 3 months but then I started getting a lot more sleepless nights which for me is waking up every 2 hours or less. Which tells me the GABA is becoming less effective and there still is a fundamental problem. This happens with all sleep aids that I have tried including prescription meds. They work for awhile then lose their effectiveness.

    I don't sleep during the day even though I try to take a nap. I have the wired but tired feeling, so my dr will be testing my cortisol levels. I have ordered the seriphos to see if it helps.

    I have been taking the extra b12 and folate and multivitamin along with omega 3, coq10, grape seed, and fibro freedom which has magnesium and 5htp. This is what has improved my energy and relieved much of my pain. Also going gluetin free. I no longer use any prescription meds, which was a big improvement. I believe the meds were making me sicker with all the side effects. I have gone from almost daily migraines and major neck and back pain and major anxiety due to pain level. To being able to cook healthy meals and working part- time. But still have those bad days.

    So now I am committed to trying the methylation protocol in hopes it will boost the glutathione that we need. I am hoping by using the brands and dosage that rich is using then I can get more to the fundamental chemistry that is throwing my system off. I really think Rich and Neil Nathan have come up with a good formula for even better results.
    [This Message was Edited on 07/28/2012]
  17. neoplus1

    neoplus1 Member

    about that wired but tired feeling. I absolutely CANNOT take a nap during the day or I will have so much trouble sleeping at night. Today I am going to be ordering the Solgar metafolin and lecithin. I am wondering if I should also get potassium just in case. All the supplements say they contain 99mg of potassium which turns out to be 3% of DV, that seems a bit small.

    If you're taking b12 and folate aren't you technically on the protocol already? Or are you also looking to include the Actifolate? I think the phosphotidylserine or the seriphos is a good idea. Hopefully that will get your sleep into a normal consistant rhythmn as well as be able to sleep straight through the night for more than 5 hours. That maybe could take your improvement much higher. I'm glad to see your progress already and I really hope it grows even more. Goodluck!
  18. mbofov

    mbofov Active Member

    Neo - if you do a little research re a b12 and/or folate deficiency, you will see that treatment for correcting these deficiencies can cause sometimes severe potassium deficiencies. I'm going to ask Rich to comment on this. Freddd talks about it a lot, and I've experienced it myself.

    It's mentioned briefly here:
    http://emedicine.medscape.com/article/204066-treatment#aw2aab6b6b2
    http://potassiummetabolism.blogspot.com/
    http://forums.phoenixrising.me/index.php?threads/warning-low-potassium-is-dangerous.14410/

    Yes, 99 mg. is not very much. Even if you take 1,000, that's still less than 25% of the RDA and the RDA has been criticized as being too low. When I first started on Freddd's protocol, I found I had to take 800 to 1000 mg. of potassium a day, and now am on 400 mg. as a maintenance dose.

    I suggest you read what Freddd has to say about it (see http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

    Mary
    [This Message was Edited on 07/28/2012]
  19. mbofov

    mbofov Active Member

    Seriphos can be very helpful for sleep if your cortisol levels are high at night. However, it should be taken in the morning, paradoxically enough, something to do wtih circadian rhythms. I found this out the hard way (like everything else!)

    It won't make you sleepy, but does calm you down by lowering cortisol, and definitely will help with sleep at night.

    Mary
  20. mbofov

    mbofov Active Member

    You may need to add in some potassium. Taking folate and/or B12 can cause a potassium deficiency which can cause fatigue, among other symptoms - see posts above.

    Mary