IanH and others, my next treatment step....

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by neoplus1, Feb 5, 2013.

  1. neoplus1

    neoplus1 Member

    So because of the improvements I have experienced through study of Meditation and Qigong, I have decided that I now may have the guts to go to the next step.

    I would like to use a simplified SIMPLIFIED Methylation protocol and a simple Mitochondrial protocol.

    For the Methylation protocol I am going to use either Hydroxocobalamin or Methylcobalamin, Methyl-Folate, and the sublingual glutathione by source naturals that Mary had spoken about in another thread.

    I am considering using P-5-P(Vitamin b6) in addition to the other Methylation supplements.

    For Mitochondrial supplements I will be using Coenzyme Q10 in the form of Ubiquonol and Acetyl-Carnetine.

    I am not sure whether to use hydroxocobalamin or the Methyl form. The Hydroxo form is a bit pricey and harder to find and I am not sure that it yields any advantage.

    My concern with the Methylcobalamin is that it may go too far in supporting methylation.

    The reason I am using Ubiquonol(Reduced form of Coenzyme q10) is because I don't see why I would take an oxidized form of something when a reduced form is available.

    Oxidized coenzyme q10 made me ill when I tried it before in the past. I felt weak and very sick and I only took a small amount. Ubiquonol made me feel really good for the first hour and a half, but then it became too much and I felt anxious and hyper. That was only taking 50mg and I can't find a lower dose so I am not sure what I will do about that.

    I will be using curcumin in the form of organic whole turmeric root with a min 4% curcumin. I will also be using a probiotic, but I am not sure which one yet. Taurine is also something I am considering.

    I currently already take Vitamin D3 1000IUs and Vitamin K2 90mcg as well as coconut oil.

    Any advice and suggestions would be greatly appreciated.

    Steve
  2. IanH

    IanH Active Member

    I do not think you find any difference between methyl and hydroxo-cobalamin. I never did. In fact I now take cyanocobalamin and find no difference (nor does my wife). It must be subligual too, I suggest the 1000mcg twice daily.

    I suggest MTHF or methyl-tetrahydrofolic acid (folate). 400-500mcg twice daily

    I started on folinic acid (Folinic acid is 5-formyl-tetrahydrofolic acid).

    Neither of these requires the action of dihydrofolate reductase for their conversion, which is helpful in ME/CFS and for people who have genetic polymorphisms for this enzyme.

    Both MTHF and Folinic acid, allows for some purine/pyrimidine synthesis to occur in the presence of dihydrofolate reductase inhibition, so that some normal DNA replication and RNA transcription processes can proceed at their normal rate.

    B6 is important, I suggest 50mg twice daily.

    Ubiquinol is good and necessary. Regarding the dose. If you have a tolerance problem then: To start with, as it will be in capsule form you could bite a hole in the capsule and draw out about half with your teeth. It is tasteless. Then put a piece of clingwrap around the remainder till evening, then take the balance. Some oxidation will occur but very little, more important that you can tolerate it.

    Acetyl-carnitine could be optional but I suggest you do use it.

    I also suggest magnesium 200mg twice daily. If you can, a good multivitamin to balance out other vitamins and minerals would be useful

    Also, why do you take only 1000IU vitamin D3? Do you get a lot sun?

    Rather than taurine I would suggest creatine. However both are optional.
    Otherwise sounds good as a starter.


    [This Message was Edited on 02/05/2013]
  3. neoplus1

    neoplus1 Member

    Terrific advice Ian thank you. I will use your suggestion for the Ubiquinol. Like I said it made me feel pretty good at first and I had energy, but then I became very jittery and uncomfortable. Perhaps that is a sign that I need it and am not making enough?

    As far as the vitamin d3 goes, I only was taking 1000IUs because before I was so sensitive to everything. Now that i have been improving, I am not so sensitive as I was and will likely up the dose. I DO NOT get a lot of sunlight, so enough vitamin d3 will be important. Once spring comes I will try to get most of my d3 from sunlight.

    I have not been able to take magnesium in supplement form. Every time I do I get the feeling of low blood pressure and weakness. Although it may not be ideal, but through further tweaking my diet, I hope to include very magnesium rich foods. It seems like the only option right now.

    The reason for my interest in Taurine is because of its neuromodulating and neuroprotective potential, particularly against excitotoxicity. It seems useful for cardiovascular function as well, particularly in those with arrhythmia. If RichVank is correct about methylation block, then Taurine synthesis would be impaired.

    I will look into creatine as well.

    Do you have any thoughts about the sublingual glutathione? Were you going to be trying it?

    Thank you for the response Ian.

    Steve

  4. mbofov

    mbofov Member

    It sounds good. I think I pointed out in a separate post to you that you very well may experience a sudden increased need for more potassium. Freddd of the Phoenix Rising board made me aware of this, and Richvank included a cautionary note about this in his latest version of the protcol. My potassium (and energy) tanked after about 2 or 3 days on the metafolin and it took me another day or 2 to figure out what had happened. I titrated slowly up to 1,000 mg. a day and now take 400 mg. potassium as a maintencen dose.

    B6 as Ian pointed out is good too. I tihnk the best form is P-5-P. My energy increased when I starting taking this, as well as Metafolin and all the rest.

    Keep us posted how you do!

    Mary
  5. neoplus1

    neoplus1 Member

    I am going to be ordering Acetyl Carnitine, Ubiquinol, Taurine, Sublingual Glutathione, and MethylFolate today. I am looking forward to Acetyl Carnitine because there is pretty good evidence for its use in cognitive impairment, energy, and other neurological symptoms that we experience.

    It is very well tolerated.

    Taurine is another one that I am curious about. Many people who experience rapid heartbeat, especially upon waking, have noted improvements or even elimination of that symptom. Not just In fibro or CFS, but in other conditions as well.

    Some doctors use taurine to help control irregular heartbeat as well as a supplement to improve anxiety and sleep. Again, there doesn't seem to be any issues with a lot of side effects.

    I know some people have concerns with Taurine because it is used in energy drinks and those can be dangerous. But that is likely due to other components of the drink such as the sugar and caffeine. If anything, it may be the Taurine in these drinks that prevents more people from freaking out as seen by studies that look at the actions of Taurine alone.

    I will admit that I am scared. I am going to be titrating very slowly and from a very low dose for these things. I hope I tolerate them well.

    Steve



  6. IanH

    IanH Active Member

    You seem to have missed out the B12 which is probably the most important of all. Also you made no mention of magnesium, the second most important. Perhaps you are already taking these?
    Why is that?

    Also if you want to correct cognitive impairment I would suggest Carnosine not carnitine. However if you dont want to take both then the carnitine is more helpful for general mitochondrial function via the PPAR function. ie delivering fats for energy within the cell.
    [This Message was Edited on 02/12/2013]
  7. neoplus1

    neoplus1 Member

    I already have methyl b-12 that I ordered before but never had the guts to start it. I have had some bad reactions to things before that have made me too cautious.

    As I stated in my response above, I have been unable to tolerate any form of magnesium from supplements. I get feelings of low blood pressure and weakness. For the time being I am going to try to get as much magnesium from diet as I can.

    I am going to be changing my diet around a bit to avoid a multivitamin as well. I would like to get as much from good whole foods as possible.

    I am not too familiar with Carnosine. Thank you for bringing it up. I have something new to learn. I think Carnitine is a very important supplement in CFS. There was a bit of study back in the 90's showing it was generally low in CFS and there has been renewed interest in recent years with studies confirming earlier results.

    Carnitine in its various forms seems to have multiple benefits in CFS and in Fibro(or any pain problems for that matter). I am not choosing Acetyl Carnitine exclusively for its cognitive effects, but that is part of it. I think anyone should give it a try if they have CFS.

    By the way, are you going to be trying the sublingual glutathione?

    Steve
    [This Message was Edited on 02/13/2013]
  8. IanH

    IanH Active Member

    Thanks for your reply.
    We have started the sublingual glutathione. so far we have all experienced an increased vertigo and slight nausea persisting 2 to 3 hours after taking the supplement which we take twice daily. mY wife has diarrhea but I am not sure whether that has anything to do with the subGSH.

    The product we are taking also has molybdenum and riboflavin but I doubt these are causing the symptoms because we have taken them in other forms.

    We will see how it all goes after two weeks. I am not expecting too much for me but for my wife and daughter as they suffer more from MCS and I am functioning at near 80% now. My wife and daughter are easier to measure their benefits because a simple exposure to petrol or turpentine will cause them much difficulty.