I need assistance with a Methylation plan

[Marianarchy]

I wish my brain fog wasn't so bad, I might be able to read and understand enough about my 23andme results and the basic Methylation protocol to start a plan on my own. Since my brain isn't working properly, I'm crying uncle and asking for help.

I have had ME/CFS for 5+ years. Major neurological symptoms. High viral titers (EBV, HHV-6, HHV-1) and take Valcyte, Famvir and LDN. I also have Pernicious Anemia and take 5mg of injectable Methylcobalamin three times weekly. I have never had a problem with it. I recently added Jarrow's MethylFolate 400mcg once daily. My doc just prescribed injectable Folic acid, I took one dose, 800mcg last week and immediately felt depressed.

It seems like I have started the Methylation protocol in the middle by treating the pernicious anemia. How should I proceed with the attached test results?

 

[Plum]

Hi

I don't have much useful advice but wanted to say that I found the following notes very useful. Taken from a talk Rich did - towards the end he details the protocol.
http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_1R.pdf
http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_2.pdf

I understand that brain fog makes things difficult - in fact it makes things impossible but I have found it important to learn as much as I can about any treatment I choose to follow.

I have found the methylation protocol quite full on to get my head around especially when you need to look into low potassium issues as well BUT I have found wonderful people on here who I'm sure will give you lots of useful advice!

Good luck

 

[Sushi]

Marianarchy

Just a note: folic acid is said to compete (and win) for the folate receptors. So by injecting folic acid you may be blocking Methyl Folate.

Sushi

 

[Red04]

I think it's reasonable to assume that both your negative reaction to methylfolate and your symptoms, suggest you may have a methylation problem. The negative reaction you had to metafolin might be induced folate deficiency or the increased potassium demand. Your intake of methylfolate is just enough to fire up the methylation cycle and all of the sudden, you need more metafolin. So you get negative reactions (depression). It's a little counter-inuitive, but when it makes you feel bad, you may need more.

My wife has been 95% healed for over 2 years using Freddd's protocol stickied at the top of the page. The active b12 protocol. Please note that the jarrow mb12 is no longer considered effective by many people on here. If you can "handle" 800mcgs methylfolate and are already injecting methylcobalamin, Freddd's protocol might be an easy enough transition for you. The other protocol used by many is Rich's protocol, also stickied at the top.

I suggest reading up on the two protocols and picking one based on your desired aproach. The active b12 protocol (Freddds) takes a direct approach and one must "embrace" the symptoms (depresssion, any many others) in the beginning and use them as signs to titrate more supplements. You supply your body with the active forms of the supplements so no conversion is necessary. Some will say that this overdrives the methylation or causes detox. This is a huge difference of opionion on this message board. Having seen the active b12 protocol work miracles in a few short months, I am a little biased, but I believe the "detox" and "overmethylation" are often confused with induced "paradoxical" folate defeciency or potassium demand. This can be tested trating the "startup" symptoms away with mb12, adb12, potassium, and methylfolate.

Rich's protocol is a lower slower approach that makes the assumptions that your body will convert "inactive" forms of b12 and folate at the rate it needs them, and this slowly lifts the methylation block. Whatever you decide, stick with it for a few months. Work within the supplements listed in the protocols. People have a tendency to start customizing the protocols and adding outside supplements for many different reasons and it gets confusing and overwhelming. Keep it simple, work within the protocol.

As far as your injecting mb12 for Pernicious Anemia, the sublingual mb12 could take care of that. Check with your doctor, but most on here get better results with the b12 lozenges. The injectable forms can degrade with light and have other inherit problems. Don't look at treating methylation as another symptom. Look at it as the root cause of all your illness.

Final note, watch potassium demand and don't start without some on hand. My wife battled cramping and IBS symptoms and had a large potassium demand for months when she started the protocol. Some have theorized that its your body healing and using all the potassium. Whatever it is, if you don't have supplements on hand, it causes a lot of problems and can be lethal.

Its a lot to take in and very confusing, post any questions you have here and someone will usually answer them.

 

[cph13]

I think it's reasonable to assume that both your negative reaction to methylfolate and your symptoms, suggest you may have a methylation problem. The negative reaction you had to metafolin might be induced folate deficiency or the increased potassium demand. Your intake of methylfolate is just enough to fire up the methylation cycle and all of the sudden, you need more metafolin. So you get negative reactions (depression). It's a little counter-inuitive, but when it makes you feel bad, you may need more.

My wife has been 95% healed for over 2 years using Freddd's protocol stickied at the top of the page. The active b12 protocol. Please note that the jarrow mb12 is no longer considered effective by many people on here. If you can "handle" 800mcgs methylfolate and are already injecting methylcobalamin, Freddd's protocol might be an easy enough transition for you. The other protocol used by many is Rich's protocol, also stickied at the top.

I suggest reading up on the two protocols and picking one based on your desired aproach. The active b12 protocol (Freddds) takes a direct approach and one must "embrace" the symptoms (depresssion, any many others) in the beginning and use them as signs to titrate more supplements. You supply your body with the active forms of the supplements so no conversion is necessary. Some will say that this overdrives the methylation or causes detox. This is a huge difference of opionion on this message board. Having seen the active b12 protocol work miracles in a few short months, I am a little biased, but I believe the "detox" and "overmethylation" are often confused with induced "paradoxical" folate defeciency or potassium demand. This can be tested trating the "startup" symptoms away with mb12, adb12, potassium, and methylfolate.

Rich's protocol is a lower slower approach that makes the assumptions that your body will convert "inactive" forms of b12 and folate at the rate it needs them, and this slowly lifts the methylation block. Whatever you decide, stick with it for a few months. Work within the supplements listed in the protocols. People have a tendency to start customizing the protocols and adding outside supplements for many different reasons and it gets confusing and overwhelming. Keep it simple, work within the protocol.

As far as your injecting mb12 for Pernicious Anemia, the sublingual mb12 could take care of that. Check with your doctor, but most on here get better results with the b12 lozenges. The injectable forms can degrade with light and have other inherit problems. Don't look at treating methylation as another symptom. Look at it as the root cause of all your illness.

Final note, watch potassium demand and don't start without some on hand. My wife battled cramping and IBS symptoms and had a large potassium demand for months when she started the protocol. Some have theorized that its your body healing and using all the potassium. Whatever it is, if you don't have supplements on hand, it causes a lot of problems and can be lethal.

Its a lot to take in and very confusing, post any questions you have here and someone will usually answer them.

EXTREMELY well stated by "a student of learning & healing (wife)". Short sweet and to the point. Thank you Red04. xoC

 

[Marianarchy]

Thanks Red04. You explanation was very helpful. I was confused about the difference between Rich and Fredd's protocols. I have also been reading the heartfixer and Yasko websites. This is probably where I am really confused. They talk about fixing CBS and COMT problems, sulphates and sulphites. Is it important to fix these first to get the benefits of the B-12 protocol?

 

[Victronix]

I recently added Jarrow's MethylFolate 400mcg once daily.

Was this dose tolerable for you? Did you have side effects? Are you continuing?

I hope you don't get anymore folic acid injections. Here's some of what Fredd says about folic acid:

Folic acid and for fewer people I believe, folinic work something like this. I will describe the folic acid. At a low dose like 400mcg it might work quite well. For some people it doesn'rt work even at low levels, about 20%. About 30% can utilize amounts less than 800mcg. About 50% can utilize up to 800-1000mcg. The theory has been for about 30 years that unconverted folic acid can accumulate until it blocks the channel in some way and prevents l-methylfolate from getting to where it needs to get to. In many trial titrations of myself and others it appears that folic acid can block about 10 times as much l-methylfolate, is it is blocking. Sometimes it just isn't delivering the methylfolate where and when needed but isn't blocking it per se Folinic acid is very similar except that it has a longer halflife. It appears that it can block 10-20 times as much l-methylfolate and it appears to take several days to clear whereas folic acid clears in about 24 hours sufficienctly for methylfolate effectivness, depending upon degree of blocking.

The only way I know of to find out is to do a trial with no folic and no folinic. If it makes a large noticable difference you will notice. Then you can try various combinations and find out which you can take and which you can't.

There is a lot of ellimination of possiblities in all this in order to be sure of what is working. After one gets things working well it becomes easy to see what doesn't work and what does. In the end it all makes sense . Part of the problem is that only some pathways are well identified. I was able to define only those I experienced and others that were frequent enough and welll described. I'm hoping that the next few most frequent pathways can be further defined this year. It's taken 5 years to work out this folate business becasue so much of it is paradoxical.

So to describe folic acid, typically it starts low and positive with small doses as the dose increases it becomes proportionately more effective. Then at some point it tops out at maybe 50% of what is sufficient for healing and then heads down going down to perhaps minus 50%, a blaockage condition. However, without enough MeCbl it can also despite folate insufficiency it it is relatively more common than MeCbl a person can then trigger into methyltrap an even worse folate deficiency symptoms set..http://forums.phoenixrising.me/index.php?threads/b-complex-without-folic-acid.19352/#post-341816

There's also an interesting thread on this topic here: How to Titrate to Get Out of Donut Hole Insufficiency http://forums.phoenixrising.me/inde...to-get-out-of-donut-hole-insufficiency.22614/

They talk about fixing CBS and COMT problems, sulphates and sulphites. Is it important to fix these first to get the benefits of the B-12 protocol?

The Yasko/Heartfixer suggestion about COMT is to use non-methylating forms of B-12, but I'm COMT++ and although it was difficult, I was able to take methyl B-12 and it greatly improved my condition. Freddd has made the case for why hydroxy B-12 is problematic, even as that may be easier for some with COMT polymorphisms to take. My experience with methyl B-12 is that it was hard for about 2 weeks and then the side-effects subsided totally. This is not the case for methylfolate for me, which seems much more complex in terms of side effects and interactions, etc., but for many, there is no problem.

I don't know if the sulfer and ammonia reducing diets would have any impact on the B-12 protocol. I haven't yet tried that, but feel a little concerned as some foods, like eggs, which I presume are high sulfer, have many other important nutrients that I wouldn't want to eliminate. I have issues with malabsorption, so food nutrients are important.

 

[Red04]

Thanks Red04. You explanation was very helpful. I was confused about the difference between Rich and Fredd's protocols. I have also been reading the heartfixer and Yasko websites. This is probably where I am really confused. They talk about fixing CBS and COMT problems, sulphates and sulphites. Is it important to fix these first to get the benefits of the B-12 protocol?

I would stick to learning the practicalities of Freddd or Rich's protocols for now. Don't overthink it. At some point you have to stop reading and start trying to correct methylation. So much of that is unproven and theoretical. I have read the heartfixer stuff. It is pretty interesting (and complicated and hard to test for) but at the end of the day, I'm not sure it really helped me out. I think it may go so far as to set people back, who could otherwise jump in and get better....

I think its awesome and I hope they get it all figured out. When I originally found that, I bet I read it 10x making sure I understood it. But, currently, the theories and doctors didn't get it done. The pragmatic approach of trial and error and titration did.

 

[Lotus97]

Thanks Red04. You explanation was very helpful. I was confused about the difference between Rich and Fredd's protocols. I have also been reading the heartfixer and Yasko websites. This is probably where I am really confused. They talk about fixing CBS and COMT problems, sulphates and sulphites. Is it important to fix these first to get the benefits of the B-12 protocol?

The CBS and COMT issues depend largely on your SNP. Certain SNPs can cause a lot of problems for people, but it's not absolutely necessary to have your SNPs tested. There is an entire forum on Phoenix Rising dedicated to SNP testing and many people here do get their SNPs tested so I would not so easily dismiss it.

Rich recommends starting with hydroxocobalamin and a low dose of methylfolate. He bases his recommendations on a study on CFS patients using an older version of his protocol which proved to successful for the majority of the people in the study. That said, when Rich revised his protocol last year he provided instructions on switching to methylcobalamin and raising the methylfolate dose if hydroxocobalamin didn't yield any improvements. Also, there are many supplements in Freddd's protocol which he calls "cofactors" which don't have anything to do with methylation. Some of those are included in the multivitamin Rich recommends, but many aren't so if you do decide to do Rich's protocol I'd recommend looking into some of the additional supplements.

 

[caledonia]

I agree with the others - the synthetic vitamin "folic acid" is not good and should be discontinued. It can block absorption of methylfolate, which is the final conversion utilized by the body. If you block methylfolate, you'll block methylation (and thus neurotransmitter production, thus causing depression).

CBS is one of the First Priority mutations. Theoretically, you would work on this before adding in B12 and folate. However, you only need to treat your CBS mutations if they're expressed. If they were expressed, you would have trouble tolerating even tiny mounts of methyl B12 and methylfolate. You would be experiencing stress/anxiety symptoms. This doesn't seem to be your case. If you want some cost effective way to verify to be sure, you can order urine sulfate strips and see if your sulfate is high. You can also have your ammonia levels tested. That's a blood test, so more expensive.

COMT can put a limit on how much mB12 you can tolerate. There is an interaction with VDR taq that makes a COMT+ mutation better or worse. According to Yasko (see COMT/VDR chart): http://www.scribd.com/doc/132017201/Dr-Amy-s-Simplified-Road-Map-to-Health you might have to be a little careful about it (she's suggesting hydroxycobalamin instead of methylcobalamin), but in general, but because you also have the pernicious anemia, I would just go with how you feel.

Note that you need both mB12 and mfolate to cause methylation. So when you were just taking the B12, if your stores of mfolate were low, no matter how high the B12 was, you wouldn't be doing much methylating. Vice versa, the other way too. If you were taking mfolate and your stores of mB12 were low, you wouldn't be doing much methylating.

Anyway, like the others are saying, you seem to be on the right track. Do research into what co-factors you may need.

I disagree about everyone needing potassium. So far I haven't needed additional potassium, but I have needed additional magnesium. This has been the case even before I started methylation - I'm losing electrolytes like crazy and do a homemade electrolyte replacement drink four times a day - mine is sodium and magnesium, no potassium, which I don't tolerate.

 

[aquariusgirl]

If you have been reading Yasko, you will note that she seems to have changed her ideas about the starting point for all this .. based on what she is seeing in chronically ill adults.. (READ us lot) and is saying that if you have a lithium problem and you supplement B12, you risk screwing up your lithium even more, which since you need it to transport B12 is probably a not so great idea....

I think this lithium thing is gonna be big... and for some of us it might tie into BH4.

 

[dbkita]

If you have been reading Yasko, you will note that she seems to have changed her ideas about the starting point for all this .. based on what she is seeing in chronically ill adults.. (READ us lot) and is saying that if you have a lithium problem and you supplement B12, you risk screwing up your lithium even more, which since you need it to transport B12 is probably a not so great idea....

I think this lithium thing is gonna be big... and for some of us it might tie into BH4.

Do you have any links to material that discusses this Aquariusgirl? I would love to learn more what her latest views are.

 

[Lotus97]

Is there a lot of SNP information that's changed over the years? I assume much of the information comes from Yasko. I could be wrong about that, but in Caledonia's signature her link to Heartfixer's site mentions Yasko. Since aquariusgirl said something about Yasko's views changing, that could mean a lot of information out there is possibly outdated since it seems other websites are just recycling Yasko's views. I'm not sure I have the brainpower or the determination to learn all this from the ground up so I'm going to have to rely on so-called experts for now.

 

[Red04]

So are several people doing the following?

1. Trying one of the protocols here
2. Getting "stuck"
3. Testing for SNPs
4. Then treating accordingly with yasko or heartfixer and back through methylation
5. Seeing major improvement

 

[aquariusgirl]

Dbkita: the paragraphs below are taken from an email circular from Dr Nancy Mullan who works closely with Yasko.
Quote: This is just not simple…. You need to get lithium in balance before attempting to push the long route with 5-methylTHF and methylB12, or, to quote Dr Yasko, “…you really risk having people crash in a big way.” Our attention was called to this by having really chronically ill MTHFR+ adults come to us whose clinicians were trying to push detox and fill in the substrates in the long route way too much, way too soon.
Doctors are used to the paradigm in which one gene is responsible for a disease. This is the way genetics has been used historically. Dr Yasko has given us the first genetic test to examine a whole biochemical pathway that impacts on a particular function, the methylation function. So I give her the last word here:
Single mutations, or ‘biomarkers’ as they are called, are generally perceived to be indicators for specific health issues. A single genetic mutation has been found to be responsible for sickle cell anemia, for example. And cystic fibrosis has also been traced to one gene. However, for a number of health conditions, it may be necessary to consider an entire interconnected biochemical pathway as the biomarker for underlying genetic susceptibility. This requires expanding the view of a biomarker beyond the restriction of a single mutation or a single gene to all of those mutations or SNPs that impact these multiple pathways of interconnected function

 

[aquariusgirl]

I hope it is ok to cut & paste like this.. It is posted on scribd.. so I hope I am not violating any copyright rules....


Feb 12, 2013 3:50 pm
http://www.scribd.com/doc/125176090/Lit ... Metabolism

I wanted to reiterate an important connection I have discovered concerning those who are MTR + and lithium levels. This relationship also seems to hold true for many adults regardless of their MTR status (this may be due to the impacts of oxidation with aging). I tend to find VERY LOW lithium levels (and signs of higher level lithium excretion) for those who are MTR + as well as many adults. This is important to pay attention to, as lithium plays a role in helping with B12 transport. Especially for those who have concerns about about transcobalamin II deficiency you want to be sure you keep lithium in a healthy normal range. Lithium levels can be followed on a combination of a HMT and a UEE. Also blood lithium levels can be checked. Those who show very low in cobalt on a UEE in spite of adequate B12 support should consider that lithium may be low and look at lithium on that same UEE as well as running a HMT. Possible sources of low dose lithium support can include low dose lithium orotate, Be Calm Spray, Lithia water. This connection is described in greater detail on the Lithium DVD (online no charge at http://www.dramyyasko.com/resources/web ... -webisode/) As ALWAYS work with and defer to your doctor when using supplementation.
With love and hope, Dr.Amy
griffkoom
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[aquariusgirl]

There have been a number of questions lately about how to start with the program. So I thought I would take a moment and briefly review how to get started for those adults as well as individuals with autism interested in the program. I feel the first step is to get balance glutamate and gaba in part by pulling down glutamate levels that are too high. Tools you can consider for help with this include: Be Calm Spray, Ku shen tea(may help neutralize excess glutamate
http://bit.ly/11gKqxO
), carnosine(as it may help decrease glutamate transport), gaba, Nerve Calm Formula, Resveratrol Spray, pycnogenol, grape seed extract. It is not necessary to use all of these, which ones you choose will depend on your doctors opinion, how much of an issue glutamate is and which supplements you respond well to. Also glutamate works with calcium to cause excitotoxicity so keeping calcium in balance with zinc, low dose lithium and magnesium can be a help. Also you can consider the use of ATP to be sure phosphate levels don't drop too low so that leucine increases which can in turn increase glutamate. All of this is part of STEP 1 of the program, which you can read more about in the book and workbook and the updated supplement by mutation list.

Next, you can work with your doctor on getting some basic methylation support in place. Start with the short cut first, looking at the use of PS/PE/PC along with SAMe(if it is tolerated), VitaOrgan and DHA. While working on the short cut check that lithium levels are in balance. If not, work with your doctor on low dose lithium support. Where lithium plays a role in B12 transport if you start to add too much B12 before lithium is in balance you run the risk of further depleting lithium levels. Once lithium is in balance consider low dose hydroxy and adenosyl B12 and continue to keep an eye on lithium levels. Finally look at long route support with supplements such as MethylMate A + B. Move slowly and work with your doctor as long route support may trigger detox. Special considerations should be given to a need for support for those with CBS and SHMT SNPs. Where MTHFR compromises the long route. I would start with the short cut and then be sure lithium is in balance, be sure taurine is not too high, be sure SHMT is not an issue...THEN once short cut is supported and lithium, taurine and iron are in balance I would add hydroxy B12 and a drop or two adenosyl B12 (and methyl if COMT --/Taq ++) and THEN add low dose Methylmate A + B and the MTHFRA1298C Compound to get around the long route.
For more information please view the DVDs , webisodes and previous presentations all online at no charge. And as always work with and defer to your doctor. With love and hope, Dr. Amy
http://www.scribd.com/doc/123021228/Neu ... -receptors

 

[aquariusgirl]

Not endorsing any of this.. just interested to see what Yasko is seeing in her data.. I mean she tests a lot of people often and for a lot of things.. so u wld expect her to see trends/abnormalities.....

How she interprets it is another thing of course.

 

[baccarat]

This may be of interest to anybody who perhaps like me could not afford testing or the substantial number of supplements required under the Yasko's protocol.

Until a few years ago I used to be unable to tolerate any methylation supplements. The slightest dose of B12 and any form of folate would make me feel so wired, sam would cause mood changes and feel like i was going nuts and I suffered from severe insomnia. Persisting made my illness worst. I couldn't afford testing so I never knew waht was actually wrong. I only tested my homcysteine levels through my gp and it was quite high which could indicate a methylation problem.

Fast forward a few years and I managed to unexpectedly overcome all of that by other, unrelated treatments for parasites and bacteria.
Since then I was able to tolerate the smp without any problem, most nights I sleep like a log and the old and quite severe anxiety and low stress tolerance I suffered from have resolved. I also used to have problems with toxicity but I recently managed to redecorate part of my flat with no problems.

Perhaps I should add, as it was rightly pointed out in earlier posts, that mutations are relevant if and when they're expressed.
I suspect, but I can't be 100% certain, that pathogens and their toxins affect the expression of our mutations, otherwise I would not know how to explain such changes in my system and ability to tolerate again different stressors. Although I remember that Yasko's patients seem to be on a wide package of treatments also covering chelation of heavy metals and pathogens which certainly contribute to her success cases.

 

[Branston]

When you said your wife had "large demands for Potassium", could you say how much she had to take and what kind of Potassium product she used?
I am realising what a BIG deal Potassium is for me.... my heart rate increased, my heart felt as if it was "thumping" in my chest, my legs and ankles developed oedema and swelled up. i was going into heart failure.
I am using a Potassium salt substitute now and taking about 600mg 3 times a day-ish.

I think it's reasonable to assume that both your negative reaction to methylfolate and your symptoms, suggest you may have a methylation problem. The negative reaction you had to metafolin might be induced folate deficiency or the increased potassium demand. Your intake of methylfolate is just enough to fire up the methylation cycle and all of the sudden, you need more metafolin. So you get negative reactions (depression). It's a little counter-inuitive, but when it makes you feel bad, you may need more.

My wife has been 95% healed for over 2 years using Freddd's protocol stickied at the top of the page. The active b12 protocol. Please note that the jarrow mb12 is no longer considered effective by many people on here. If you can "handle" 800mcgs methylfolate and are already injecting methylcobalamin, Freddd's protocol might be an easy enough transition for you. The other protocol used by many is Rich's protocol, also stickied at the top.

I suggest reading up on the two protocols and picking one based on your desired aproach. The active b12 protocol (Freddds) takes a direct approach and one must "embrace" the symptoms (depresssion, any many others) in the beginning and use them as signs to titrate more supplements. You supply your body with the active forms of the supplements so no conversion is necessary. Some will say that this overdrives the methylation or causes detox. This is a huge difference of opionion on this message board. Having seen the active b12 protocol work miracles in a few short months, I am a little biased, but I believe the "detox" and "overmethylation" are often confused with induced "paradoxical" folate defeciency or potassium demand. This can be tested trating the "startup" symptoms away with mb12, adb12, potassium, and methylfolate.

Rich's protocol is a lower slower approach that makes the assumptions that your body will convert "inactive" forms of b12 and folate at the rate it needs them, and this slowly lifts the methylation block. Whatever you decide, stick with it for a few months. Work within the supplements listed in the protocols. People have a tendency to start customizing the protocols and adding outside supplements for many different reasons and it gets confusing and overwhelming. Keep it simple, work within the protocol.

As far as your injecting mb12 for Pernicious Anemia, the sublingual mb12 could take care of that. Check with your doctor, but most on here get better results with the b12 lozenges. The injectable forms can degrade with light and have other inherit problems. Don't look at treating methylation as another symptom. Look at it as the root cause of all your illness.

Final note, watch potassium demand and don't start without some on hand. My wife battled cramping and IBS symptoms and had a large potassium demand for months when she started the protocol. Some have theorized that its your body healing and using all the potassium. Whatever it is, if you don't have supplements on hand, it causes a lot of problems and can be lethal.

Its a lot to take in and very confusing, post any questions you have here and someone will usually answer them.