Simplified Methylation Protocol Revised as of Today
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Thanks so much, Freddd, Rich. I'm still digesting all your comments and trying to figure out where I go next....
Lucyhem - yes my neck was like a steel girder... good description! I woke constantly in the night and had to crack it as it felt like it would explode unless I self adjusted. It is still feeling better, though I had some extra pain again last night for the first time in a while. This whole thing can be really confusing.... trying to figure out detox from deficiency symptoms. Are you on the protocol but not experiencing any improvements in your neck? Really sorry to hear that
Lucyhem - yes my neck was like a steel girder... good description! I woke constantly in the night and had to crack it as it felt like it would explode unless I self adjusted. It is still feeling better, though I had some extra pain again last night for the first time in a while. This whole thing can be really confusing.... trying to figure out detox from deficiency symptoms. Are you on the protocol but not experiencing any improvements in your neck? Really sorry to hear that
Hi, SJB944.
Activated charcoal does not adsorb minerals very strongly. The adsorption occurs by means of Van der Waals forces, while minerals primarily bond by ionic forces. Activated charcoal does adsorb a wide range of organic molecules, including vitamins, so it should not be taken together with nutritional substances that are organic in nature.
The best binders for toxic metals are the clays, which operate by ion exchange, and the zeolites, which are aluminosilicate minerals with certain pore sizes that accommodate particular ions. These should not be taken at the same time as essential minerals.
Rich
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harrycat,
I am on the protocol and not experiencing any changes in general. Have only been on a few weeks and think I need to fiddle with the B12 to get it right. . . .I hope that makes a difference eventually.
It is so hard to differentiate detox from deficiency from sensitivity. I have many food, drug and chemical sensitivities. This forum is helpful in that regard. I rarely have identified a symptoms as detox, usually attribute reactions to sensitivities. Hard to know.
I am on the protocol and not experiencing any changes in general. Have only been on a few weeks and think I need to fiddle with the B12 to get it right. . . .I hope that makes a difference eventually.
It is so hard to differentiate detox from deficiency from sensitivity. I have many food, drug and chemical sensitivities. This forum is helpful in that regard. I rarely have identified a symptoms as detox, usually attribute reactions to sensitivities. Hard to know.
I have just done a scan of the posts in this thread and found the coverage fasciniating- I am only 2 weeks into fredd's protocol ( all co factors in place excet potassium as it burns my stomach...havent found a solution to that yet) - I am still learning and feeling my way.
I realised in reading these posts that my problems with sleep ( laying there until 3am) may have something to do with taking valium ( 5-10mg) on and off for years to deal with migraines..
I take it every couple of nights and sometimes a sleeping tablet. I am now wondering if i have a tolerance to this medication and if I need to try and withdraw myself by drawing up a titration off the medication- it seems that most people are saying the titration down needs to be done slowly and at a rate of 1% a week, if I understand it correctly. I would love it if someone could comment on that for me- I have had no success tryng to go cold turkey and have been substitiutig phenergyn , the anti hystamine to help me sleep some nights ( my itching and headaches have been worse since starting the protocol so it is hard to get to sleep naturally- especially taking my cold turkey approach into account)
I also posted on this site that at 2 weeks i tried to increase from 500mg methyl B12 to 1000mg. The following day i was bedriddden with nausea, intolerable headpain and an increase in the itching. I am not sure if i should just go back to the 500 mg dose for a day- hope this settles and then titrate very 4 or so days by about 125mg ( 1/8 of 1000 mg tablet).. that would take me 16 days to get to the 1000 mg all going well...any thoughts? the big jump I did from 500mg at day 10; follwed by 3 days at 750 then day 14 at 1000 just made me non functional. I am feeling my way and hoping I am not doing harm
many thanks
Suzanne
I realised in reading these posts that my problems with sleep ( laying there until 3am) may have something to do with taking valium ( 5-10mg) on and off for years to deal with migraines..
I take it every couple of nights and sometimes a sleeping tablet. I am now wondering if i have a tolerance to this medication and if I need to try and withdraw myself by drawing up a titration off the medication- it seems that most people are saying the titration down needs to be done slowly and at a rate of 1% a week, if I understand it correctly. I would love it if someone could comment on that for me- I have had no success tryng to go cold turkey and have been substitiutig phenergyn , the anti hystamine to help me sleep some nights ( my itching and headaches have been worse since starting the protocol so it is hard to get to sleep naturally- especially taking my cold turkey approach into account)
I also posted on this site that at 2 weeks i tried to increase from 500mg methyl B12 to 1000mg. The following day i was bedriddden with nausea, intolerable headpain and an increase in the itching. I am not sure if i should just go back to the 500 mg dose for a day- hope this settles and then titrate very 4 or so days by about 125mg ( 1/8 of 1000 mg tablet).. that would take me 16 days to get to the 1000 mg all going well...any thoughts? the big jump I did from 500mg at day 10; follwed by 3 days at 750 then day 14 at 1000 just made me non functional. I am feeling my way and hoping I am not doing harm
many thanks
Suzanne
MethylMate dose equivalent in folate
Hi rich,
I'm going to try doses of folate and b12 at the levels in your simplified protocol for a while, to see what happens. I see that you list MethylMate as being (6s)-methyltetrahydrofolate with 3 drops being a dose of 210mcg.
I have Solgar's 800mcg folate tablets which are described as L-methylfolate-Metafolin. Is this the same stuff? So if I use a quarter of a tab I'm getting about the right dose?
Hi rich,
I'm going to try doses of folate and b12 at the levels in your simplified protocol for a while, to see what happens. I see that you list MethylMate as being (6s)-methyltetrahydrofolate with 3 drops being a dose of 210mcg.
I have Solgar's 800mcg folate tablets which are described as L-methylfolate-Metafolin. Is this the same stuff? So if I use a quarter of a tab I'm getting about the right dose?
Oh! An extra question. I just noticed that earlier on this thread you refer to "folates" on the protocol. I was going to skip the folinic acid because of the issues that Freddd has raised about it - should I take more metafolin to compensate? If so, how much metafolin do you think I should take altogether?
Thanks again for your help!
Thanks again for your help!
Hi, Sasha.
Yes, it's the same substance. Metafolin is made by Merck. The methylfolate in MethylMate B is made by Gnosis. But it's the same substance. Yes, a quarter tab would be about the same dosage as 3 drops of MethylMate B.
Rich
Hi, Sasha.
Maybe half to one tablet. The RDA for folate is 400 micrograms per day, and 800 for pregnant women, so one-half to one tablet would be in the recommended range.
I think folinic acid is actually beneficial for most people who have ME/CFS with a partial methylation cycle block. I'm aware that Freddd did not do well on it, but as I have suggested to him, I think he might have a genetic deficiency in the MTHFS enzyme, which is apparently pretty rare. But of course, you should do what you think is best for you. And I always recommend working with a physician while on methylation treatment. I understand that it is not easy to find one who is willing and able to cooperate.
Best regards,
Rich
Thanks, rich, for your answers to both questions - very helpful, as always! I will stick to the metafolin to begin with and see how I go.
I wish I had access to a physician who could help me with this but my GP would probably think I was weird for trying it and I don't think there are any doctors in the UK using a similar protocol (except Dr Myhill but she isn't taking new patients).
I wish I had access to a physician who could help me with this but my GP would probably think I was weird for trying it and I don't think there are any doctors in the UK using a similar protocol (except Dr Myhill but she isn't taking new patients).
Rich, is there anything wrong with taking higher levels of folate? I've tried taking higher doses of Solgar's Metafoilin and have seen minor, but positive results, (a small increase in my normally low mental energy limit). Isn't the drug Deplin just a high dose of metafolin, (I believe approx. 7500mg)?
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Rich and Fred
Rich, I was interested that you said you suspected that Fred has the rare MTHFS variant. The only genetic testing I did was the 677t which showed I was homozygous for the MTHF gene. I have it double. Is that the same as MTHFS? If so, I wonder if you have considered getting tested for that variant, Fred? My insurance covered mine. I never saw a bill for it. It might be helpful to others to know if your protocol specifically benefits that gene variant.
I do tolerate the folinic acid and MethylMate well.
I am having interesting reactions to the sublingual methyl B12. The agitation has subsided somewhat from it but yesterday I had a sore spot on my gums where the lozenge sat for hours. It is still raw and sore. Again hard to know if it is the red dye, the strawberry flavoring or the B12 itself. The hydroxy has not done that.
Rich, I was interested that you said you suspected that Fred has the rare MTHFS variant. The only genetic testing I did was the 677t which showed I was homozygous for the MTHF gene. I have it double. Is that the same as MTHFS? If so, I wonder if you have considered getting tested for that variant, Fred? My insurance covered mine. I never saw a bill for it. It might be helpful to others to know if your protocol specifically benefits that gene variant.
I do tolerate the folinic acid and MethylMate well.
I am having interesting reactions to the sublingual methyl B12. The agitation has subsided somewhat from it but yesterday I had a sore spot on my gums where the lozenge sat for hours. It is still raw and sore. Again hard to know if it is the red dye, the strawberry flavoring or the B12 itself. The hydroxy has not done that.
Hi, Rockt.
Deplin indeed contains the same active ingredient, L5-methyltetrahydrofolate, as Metafolin. The dosage is 7.5 milligrams (mg) or 7,500 micrograms (mcg).
I don't think most PWMEs need this much. The concern I have about taking a high dosage of L5-MTHF is when it is taken together with a high dosage (in the high number of milligrams) of sublingual or injected methyl B12. That combination appears to overdrive methionine synthase, and it looks as though that converts too much homocysteine back to methionine, and not enough is able to go into the transsulfuration pathway, to make glutathione. I think this will hold up recovery of normal glutathione levels, which are very important in correcting numerous abnormalities in ME. Normally the cells are able to regulate this, but when given too much of these two together, they are not able to, and the methylation cycle, together with the folate metabolism, are driven into a futile cycle, passing excess methyl groups back and forth between them, and not allowing glutathione to come up.
As you probably know, Freddd's views are different on this, based on his experience. However, as I have noted several times, I suspect that he has a rather unusual genetic makeup, which I don't think is shared by many others.
Doing some lab tests can help to sort this out for a given case. The combination of a Health Diagnostics methylation pathways panel and a Metametrix plasma 40 amino acids panel will show the status of the methylation cycle, the folate metabolism, flow in the transsulfuration pathway, and the availability of the amino acids that are needed by this part of the metabolism. Some additional testing will show the status of the cofactor vitamins and minerals needed.
Best regards,
Rich
Hi, Lucy.
The MTHFS gene is a different one from the MTHFR gene, which you had characterized.
If the lozenges bother you, you might consider the drops from www.holisticheal.com They supply separate drops for methyl-, adenosyl-, and hydroxo-B12.
Best regards,
Rich
Lou
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Hi Rich,
I've avoided this thread because my experience with methylation was not a good one. It was not your protocol, but all the supplements came from Yasko's HolisticHeal. They made me far worse. The most negative effect was my blood pressure going crazy, it went from normal to sky high. And I felt terrible. Of course I stoppe the program and stopped seeing the doctor that suggested this treatment, but I've often wondered what happened. It seems to help many, so was it just me?
One of the problem pathways(there were others I can't recall) was MTHFR. The supplements I can remember taking were Folopro, methyl b-12, gaba, ora-kidney, ora-liver, paba, maybe sam-e but not sure. There were a few others cannot now recall.
Far and away, the worst symptoms came from folopro. Not far behind were methyl b-12 and ora-kidney. The others seemed somewhat negative as well. Couldn't much tolerate anything methyl.
It's my mystery. Any ideas.
I've avoided this thread because my experience with methylation was not a good one. It was not your protocol, but all the supplements came from Yasko's HolisticHeal. They made me far worse. The most negative effect was my blood pressure going crazy, it went from normal to sky high. And I felt terrible. Of course I stoppe the program and stopped seeing the doctor that suggested this treatment, but I've often wondered what happened. It seems to help many, so was it just me?
One of the problem pathways(there were others I can't recall) was MTHFR. The supplements I can remember taking were Folopro, methyl b-12, gaba, ora-kidney, ora-liver, paba, maybe sam-e but not sure. There were a few others cannot now recall.
Far and away, the worst symptoms came from folopro. Not far behind were methyl b-12 and ora-kidney. The others seemed somewhat negative as well. Couldn't much tolerate anything methyl.
It's my mystery. Any ideas.
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Hi Lou,
I couldn't tolerate any of the methylation supplements in the beginning either. I have inched my way up from small crumbs and am making progress finally. Perhaps your system just gets overloaded, like mine, and you need to start small. (I do have two MTHFR mutations as well.)
I couldn't tolerate any of the methylation supplements in the beginning either. I have inched my way up from small crumbs and am making progress finally. Perhaps your system just gets overloaded, like mine, and you need to start small. (I do have two MTHFR mutations as well.)
Hi, Lou.
I'm sorry that you had this bad experience with methylation-type treatment. I don't know what dosages you tried, but as therron noted, some people need to start at pretty low dosages and work up slowly.
Another possibility might be that your body was deficient in one or more of the cofactor vitamins, minerals or amino acids. I don't know whether you did biochemical testing to look at these, but if not, that might help.
Best regards,
Rich
Does TMG cause problems?
I'm introducing the stuff that I have from Freddd's protocol that's also in the SMP Neurological Health Formula before I add in the b12 and folate.
Yesterday I started on Vit A, D, E, B complex, Mg, zinc, Potassium, L-carnitine, iron and omega 3 with no problems.
This morning I added 100mg TMG. I haven't previously taken TMG. Within about an hour I had aching joints, which is not a symptom I've ever had. I think I have a viral infection at the moment which started with a lot of flu-like malaise and extra fatigue a few days ago. It seemed to have faded but these things wax and wane with me so it's possible that this new thing of aching joints might be related to that. I've also been perspiring a lot this morning for no apparent reason. I also feel malaise again which I didn't have yesterday and have spent the morning resting in bed and sleeping.
Does any of this sound like problems with TMG? If so, should I just stop taking it or reduce the dose and try to work up?
I'm introducing the stuff that I have from Freddd's protocol that's also in the SMP Neurological Health Formula before I add in the b12 and folate.
Yesterday I started on Vit A, D, E, B complex, Mg, zinc, Potassium, L-carnitine, iron and omega 3 with no problems.
This morning I added 100mg TMG. I haven't previously taken TMG. Within about an hour I had aching joints, which is not a symptom I've ever had. I think I have a viral infection at the moment which started with a lot of flu-like malaise and extra fatigue a few days ago. It seemed to have faded but these things wax and wane with me so it's possible that this new thing of aching joints might be related to that. I've also been perspiring a lot this morning for no apparent reason. I also feel malaise again which I didn't have yesterday and have spent the morning resting in bed and sleeping.
Does any of this sound like problems with TMG? If so, should I just stop taking it or reduce the dose and try to work up?
Hi, Sasha.
I don't know if these symptoms are associated with starting TMG or not.
TMG stimulates the BHMT (betaine homocysteine methyltransferase) reaction, as it is a reactant for it. This reaction takes place in the liver and kidneys. It is an alternative pathway for converting homocysteine into methionine, and it will help to produce SAMe in those organs.
There are a couple of ways that it might produce symptoms. One is that it will initially lower the flow of homocysteine into the transsulfuration pathway, so the rate of production of glutathione may drop lower initially. So symptoms could be caused by initially making the glutathione depletion somewhat more severe.
Another possible mechanism is that it can also take homocysteine away from the main methionine synthase pathway initially, and that will impact the folate metabolism, since the conversion of methylfolate to tetrahydrofolate will decrease in the liver and kidneys.
A little TMG is often helpful when methylfolate and B12 supplementation are started, because it can help to raise SAMe, needed for recycling methyl B12. After these supplements are well underway and methionine synthase is coming up in activity, the TMG can be stopped, or DMG can be added to counter the BHMT pathway, so as to route more of the homocysteine to the methionine synthase pathway and the transsulfuration pathway.
Best regards,
Rich