Simplified Methylation Protocol Revised as of Today

[Sasha]

Thanks, rich - I have probably confused things by being impatient and not waiting for this virus to clear before I started things up. I will give the TMG a rest tomorrow and try it again once I'm feeling better.

That's useful to know that it can be dropped at a later stage once things are properly underway.

 

[leela]

Hi Rich,

I'm checking in about the SMP, which I started sometime in early May. Mine is modified for vegetarian and other things, so what I have been taking is:

Methyl Mate B drops
Methyl B12 drops
AOR Advanced B complex
Vegetarian algal DHA
Folinic acid --panel showed I was low (boy is it a pain to quarter capsules

I have recently added B1 as the AOR doesn't have any, and I have upped the drops to three drops B12 and 4 drops MTHF.

One question I have is, as I up my dosing a little, is there a ratio of b12 to MTHF that is considered optimal?

As I've reported before I am on several other protocols simultaneously, so it is really hard to gauge what effects are from the SMP. I have retained the initial sleep gains, though, which I attribute absolutely to the SMP--while the sleep is still not entirely refreshing I am waking minimally during the night, which is a godsend.

About two weeks in to my SMP trial (I probably could have timed things better) I started with a new TCM doc out of state, who has me on a personalized herbal formula for the brain and stomach bugs. Within one week of that formula (about two weeks into SMP) I caught my first full-on cold-flu in five years, (others where I was visiting got it too, so it was not herx) which I took as a good sign of immune ramp-up.

However, after my doc here Dxed it as fungal, and treated for it accordingly, I have noticed that it has never really gone away. During the acute phase I had severe laryngitis for a full five days, and ever since, on most days, I am hoarse and croaky at some point, especially if a I talk for a time. I feel like I have "allergies" pretty much constantly, and my chest always feels rough, like it wants to cough. There doesn't seem to be a way to tell if this is ramp-up from the SMP, or the fact that my house has mold (I can smell it.)

The MCS have worsened. I wonder if this is something others have experienced during SMP? Maybe it's just another clue to get out of my moldy house

I have been really really tired and weak since May--part of this is the stress/PENE of travel--even though there is an underlying increase in energy. It's like I can feel the engine trying to rev, but there are "boots" on the wheels of the car. I want to believe this is the system ramping up, being met with a whole host of pathogens all at once, so it's super busy fighting battles this way and that.

Sorry this is so long. Here is a list of things that I feel have become more prominent since starting the SMP (and other protocols)

Entire skin and hair follicles itchy/hypersensitive a LOT
"Allergies" (eosinophils quite elevated in blood work)
Fairly continual axillary lymph pain
Very tired and heavy, despite sense of internal energy
Brain fog/confusion pretty constant, as if losing actual IQ points
Vision worse
Skin, mouth eyes dry a lot of the time
MCS very activated

Digestion somewhat better
Sleep definitely better
Less joint gelling/pain
Long-term frozen shoulder resolving
Feel more "positive"

I should add "verbose" to the list. For that reason I have highlighted my questions so you can skim the TMI.

Thank you, as always, for your tireless work and assistance in helping us all get this sorted. Any feedback or suggestions you might have would be most welcome.
I wonder if it is time to add or adjust anything, and especially would like to know your thoughts on the ratio question.

 

[Rockt]

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.


Thanks Rich. Would love to get these tests done, just do not have a doctor available to help.

 

[drex13]

Hi leela,

Source Naturals makes a Folinic Acid tablet, Mega Folinic, which would be easier to quarter than the capsules if you have a pill cutter.

I have tried to take methyl b-12 two different times now and neither time has been a pleasant experience. I chalked most of that up to the sweeteners that are used in the tablets. I switched to the Hydroxy b-12 drops, and have not experienced the digestive problems, fatigue etc... that I expeienced on the methyl b-12. My stamina has improved quite alot on the Hydroxy b12 drops. I have not tried the methyl b-12 drops.

 

[maddietod]

Thanks Rich. Would love to get these tests done, just do not have a doctor available to help.

Rockt, I don't have a doctor. PM me if you want details of which tests I'm doing and where the potential problems lay.

 

[lucyhem]

I dissolve my folinic acid in water in a tiny glass bottle. Then i can easily titrate it. I hope that is OK, Rich what do you think? It feels potent when I take it. My body loves it.
Lucy

 

[Sasha]

On the thread about Dr Enlander's talk in the UK, ukxmrv mentions that Dr Enlander discussed rich's work on the methylation cycle and said that he was doing research on B12, among other things.

Rich, is there anything you can tell us about this (without giving anything away that Dr Enlander would want kept under wraps while his research is ongoing)?

 

[richvank]

I dissolve my folinic acid in water in a tiny glass bottle. Then i can easily titrate it. I hope that is OK, Rich what do you think? It feels potent when I take it. My body loves it.
Lucy

Hi, Lucy.

I think that's fine. Folinic acid is pretty stable chemically and should be able to tolerate that well.

Rich

 

[richvank]

On the thread about Dr Enlander's talk in the UK, ukxmrv mentions that Dr Enlander discussed rich's work on the methylation cycle and said that he was doing research on B12, among other things.

Rich, is there anything you can tell us about this (without giving anything away that Dr Enlander would want kept under wraps while his research is ongoing)?

Hi, Sasha.

I have communicated with Dr. Enlander for several years. Over the years, he developed his own supplement protocol for treating ME/CFS, based primarily on experience, incorporating what seemed to work. He has also believed that viruses are involved, so he has incorporated supplements such as hepapressin, which is thought to be antiviral. He has compounded some oral supplements and an injectable combination of supplements, and he has also compounded an electrolyte solution based on the Blasi product (Recuperacion) from Spain.

When I came to an understanding of the importance of the methylation cycle in ME/CFS a few years ago, I noticed that some of the ingredients in his protocol are supportive of the methylation cycle. I wrote to him about this, and after looking into it, he agreed with me, and he has kindly acknowledged my contribution in his talks. He has done more study of the methylation cycle issue, and I think that some time ago he adjusted his protocol somewhat to take advantage of what he learned.

I don't know what specifically he was referring to in terms of doing research, but I think he is keeping track of the results of using treatment that includes support of the methylation cycle.

I have appreciated Dr. Enlander's efforts and his interactions with me a great deal. He has been willing to try things that have the promise of being helpful. He is one of the few prominent physicians who specialize in treating ME/CFS who have taken seriously the importance of the methylation cycle in this disorder and have acted accordingly. I think he is seeing a good treatment response.

Best regards,

Rich

 

[Sasha]

Thanks, rich, that's very interesting - even if all he is doing is to keep track of how his patients do in relation to a methylation protocol it will be a useful piece of proto-research and if he communicates his good results with patients to other ME specialists it might help to get the methylation approach tried by other doctors.

He sounds like a lovely guy - it's great that he is open to good ideas and willing to communicate.

 

[Sasha]

Last Sunday I came off Freddd's protocol altogether because I was getting symptoms of induced potassium and/or magnesium deficiency (profound exhaustion and sore muscles).

Yesterday evening, and for most of today, I've felt a bit short of breath and have had occasional nausea. Nausea and difficulty breathing are symptoms of too much magnesium and/or too much potassium (according to the symptom lists I've seen).

I haven't taken any potassium for a week. I've had an Epsom salts bath (500g) on Monday night and Thursday night and 180mg of magnesium as an oil spray each of yesterday and today.

I came down with a new viral infection on Sunday but the symptoms didn't include breathlessness or nausea until yesterday.

Are my problems likely to be due to any kind of rebound from stopping the protocol suddenly? Or is it likely that I've overloaded myself with magnesium?

 

[richvank]

Last Sunday I came off Freddd's protocol altogether because I was getting symptoms of induced potassium and/or magnesium deficiency (profound exhaustion and sore muscles).

Yesterday evening, and for most of today, I've felt a bit short of breath and have had occasional nausea. Nausea and difficulty breathing are symptoms of too much magnesium and/or too much potassium (according to the symptom lists I've seen).

I haven't taken any potassium for a week. I've had an Epsom salts bath (500g) on Monday night and Thursday night and 180mg of magnesium as an oil spray each of yesterday and today.

I came down with a new viral infection on Sunday but the symptoms didn't include breathlessness or nausea until yesterday.

Are my problems likely to be due to any kind of rebound from stopping the protocol suddenly? Or is it likely that I've overloaded myself with magnesium?

Hi, Sasha.

I don't know, but I think that it would be a good idea to make sure you are taking in sufficient fluids. This will help your kidneys to eliminate any excess electrolytes that might be present. I hope you will be able to get relief from this soon.

Best regards,

Rich

 

[Dreambirdie]

Hi Rich--

I just realized that I had been taking MUCH too much of the folapro (800 mcg) in ratio of the B12 (250 mcg).
(It's all because those stupid little folapro pills are so hard to slice.) :headache:

I haven't had any adverse symptoms that I've noticed... so far.
What problems are created by taking too much of the folate, and how long after you begin the correct ratio, will it take to bring things into balance?

thanks in advance for you input.

 

[Sasha]

Thanks, rich - actually I don't think I have drunk very much today so I will make sure I drink a lot more water.

I feel better when I lie down so I will keep lying down! I hope it might wear off on its own.

Edit: I'm getting a bit of facial twitching too, no idea what that's about.

 

[Lou]

A belated thank you to Therron and Rich for your comments. As far as biochemical testing for possible deficienicies in cofactor vits, minerals and amino acids is there a particular test someone could recommend? Thanks.

 

[richvank]

A belated thank you to Therron and Rich for your comments. As far as biochemical testing for possible deficienicies in cofactor vits, minerals and amino acids is there a particular test someone could recommend? Thanks.

Hi, Lou.

The Genova Diagnostics NutrEval panel and the Metametrix ION panel are both helpful in this regard. They are both available without a doctor's order from www.directlabs.com, or they can be obtained through some doctors.

Rich

 

[richvank]

Hi Rich--

I just realized that I had been taking MUCH too much of the folapro (800 mcg) in ratio of the B12 (250 mcg).
(It's all because those stupid little folapro pills are so hard to slice.) :headache:

I haven't had any adverse symptoms that I've noticed... so far.
What problems are created by taking too much of the folate, and how long after you begin the correct ratio, will it take to bring things into balance?

thanks in advance for you input.

Hi, Dreambirdie.

I don't think the FolaPro will cause you any problems. Sorry that the tablets are so hard to split. In the latest revision, I have switched to MethylMate B, which is in form of drops, to make it easier to deal with. I think that raising the B12 dosage is likely to help. People seem to respond at different rates, so I can't predict how soon you will see effects. My general advice is that if a PWME has not experienced benefit on a methylation-type treatment within 3 months, it's time to do some testing to find out why, or to change the protocol. This time is based on our clinical study.

Best regards,

Rich

 

[Dreambirdie]

Hi, Dreambirdie.

I don't think the FolaPro will cause you any problems. Sorry that the tablets are so hard to split. In the latest revision, I have switched to MethylMate B, which is in form of drops, to make it easier to deal with. I think that raising the B12 dosage is likely to help. People seem to respond at different rates, so I can't predict how soon you will see effects. My general advice is that if a PWME has not experienced benefit on a methylation-type treatment within 3 months, it's time to do some testing to find out why, or to change the protocol. This time is based on our clinical study.

Best regards,

Rich

Hi Rich--

I am having positive results, even with the wrong ratio of dosages... BUT I am not sure how much of this is due to the methylation supp's, as I am also doing other protocols at the same time: Chinese herbs for the viral issues, and high doses of curcumin extract for the brain inflammation... and also the TD-glutathione to aid in the relief of some of the more severe MCS symptoms.

Initially, for about 2 months after starting all of the above, I had a lot of detox-like symptoms: headaches, intense lethargy, flu-like symptoms. But now I have less of those, and more energy available to do things I enjoy. YAY! On most days, I can walk for 30 minutes straight, and most of the time I do not get any PEM from that. I have also been able to drive a bit further and have gone to the store a few times BY MYSELF. (Any bit of freedom is a such a great relief.) I have been playing my guitar for at least an hour a day, and working on some creative projects. I could not have done so much back in April or May.

We'll see what happens down the road. Thanks again for all your great help.

 

[richvank]

Hi Rich--

I am having positive results, even with the wrong ratio of dosages... BUT I am not sure how much of this is due to the methylation supp's, as I am also doing other protocols at the same time: Chinese herbs for the viral issues, and high doses of curcumin extract for the brain inflammation... and also the TD-glutathione to aid in the relief of some of the more severe MCS symptoms.

Initially, for about 2 months after starting all of the above, I had a lot of detox-like symptoms: headaches, intense lethargy, flu-like symptoms. But now I have less of those, and more energy available to do things I enjoy. YAY! On most days, I can walk for 30 minutes straight, and most of the time I do not get any PEM from that. I have also been able to drive a bit further and have gone to the store a few times BY MYSELF. (Any bit of freedom is a such a great relief.) I have been playing my guitar for at least an hour a day, and working on some creative projects. I could not have done so much back in April or May.

We'll see what happens down the road. Thanks again for all your great help.

Hi, Dreambirdie.

It's really great to hear about the improvements!

Hoping they continue,

Rich

 

[leela]

Hi Rich,

I have been on the SMP for three months now, and while I have retained the sleep gains, can't say I feel other significant improvement.
Having done the panel at the outset, it's a bit pricey to retest now. What kinds of adjustments would one consider to the protocol wwithout firther testing?
I would also like to know what the appropriate ratio is in your experience/opinion, between mB12 and the Methylfolate. I increased each by one drop a few weeks ago.
At the beginning of (overly lengthy) post #362 of this thread I included the modified version I am currently taking.

Thanks for your input, if you have a moment

~leela