• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

repairing with B12 without overmethylation?

boo85

Senior Member
Messages
178
is it possible to repair with b12 without having to put up with overmethylation?

I know I need B12 to repair my body and brain, but the methylation is just getting too much.

If I (hypothetically) ate the same amount of B12 each day, but got it through natural sources, such as fried liver, would that prevent or slow down methylation?
 

Victronix

Senior Member
Messages
418
Location
California
It would probably help to describe what's too much a little more. How much potassium are you taking? That will be one of the biggest factors in how much suffering you have.

I use the term "start-up" symptoms to refer to the problematic symptoms -- what amounts to the combination of potassium deficiency (that is inevitable for many people who need to take m B12 or mfolate, etc), and the nerve repair that goes on (often a buzzing, tingling, brightening, itchiness, etc.). "Hypermethylation" is a term that's used on here, but it has no objective definition and so can cause confusion, esp since its used in the experimental research environment with animals with specific meaning.

But it's understandable people will use that term to describe what does feel like it's "too much". There's a reason it feels that way, and it's not because you don't need to take B-12, it's because you do.

If I (hypothetically) ate the same amount of B12 each day, but got it through natural sources, such as fried liver, would that prevent or slow down methylation?

If you have a problem with absorbing it from food, then it won't help to eat liver everyday. There's pretty much no getting around the start-up symptoms, which are a sign that your body is deficient. Importantly, once you get through the initial adjustment, things greatly improve within weeks and pretty soon all of the symptoms are gone. If eating liver everyday was enough for your body's needs, you would only be putting off the symptoms to a future date, when for some reason, you get tired of having liver everyday!

Easier to try potassium to allieviate the symptoms.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
is it possible to repair with b12 without having to put up with overmethylation?

I know I need B12 to repair my body and brain, but the methylation is just getting too much.

If I (hypothetically) ate the same amount of B12 each day, but got it through natural sources, such as fried liver, would that prevent or slow down methylation?
The absorption rate for B12 in the gut is low compared to B12 taken sublingually. You mentioned in another thread that you had a problem with methylcobalamin. Maybe you could try taking hydroxocobalamin sublingually instead if you're only getting the hydroxocobalamin injections once a week. Hydroxocobalamin is better tolerated by some people.
 

boo85

Senior Member
Messages
178
I think it is overmethylation because I feel anxious, paranoid, hyper sensitive senses (especially smell), mood changes, and just generally not being myself. It's really hard to get through.

Potassium is a different issue all together. I think I have that under control - when I take b12 practically the only foods I eat are potassium and I take potassium salt.

lotus, are you able to take hydroxy b12 under the tongue? So instead of injecting it, you just put a few drops in your mouth?
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I think it is overmethylation because I feel anxious, paranoid, hyper sensitive senses (especially smell), mood changes, and just generally not being myself. It's really hard to get through.

Potassium is a different issue all together. I think I have that under control - when I take b12 practically the only foods I eat are potassium and I take potassium salt.

lotus, are you able to take hydroxy b12 under the tongue? So instead of injecting it, you just put a few drops in your mouth?
Pretty much everyone here takes hydroxocobalamin, methylcobalamin, and adenosylcobalamin sublingually (under the tongue or between the lower or upper lip and gum) as it's much better absorbed that way. Tablets work better than drops though as far as absorption. All three types of B12 are available in tablets. With Perque's hydroxocobalamin tablets you need an X-acto knife if you want to cut it into smaller pieces. You can get one either on eBay or Amazon or a local art and crafts or hobby supply store. If 1/4 of a tablet taken sublingually is too much you could just swallow it (take it orally). Then gradually increase your dose orally. And then try taking 1/4 tablet sublingually again.

This is from Rich as far as why B12 is needed to be taken sublingually or intravenously (and in higher than normal doses)
Why is the dosage of vitamin B12 so high for ME/CFS treatment?
Hi, all.

The above question has been around for quite a few years, and we haven't had a good answer for it. I think it is now possible to answer it, based on some recent research in Korea.

Here's some background: In the 1990's, Drs. Charles Lapp and Paul Cheney initiated treatment of their CFS patients by injection of vitamin B12, after observing that many patients had elevated homocysteine or methylmalonate in urine testing. They found that there was a threshold of response at between 2,000 and 2,500 micrograms per injection to produce an improvement in energy, stamina or wellbeing that lasted for two or three days. Lower dosages did not appear to produce improvements. This was puzzling, because the recommended daily allowance (RDA) for vitamin B12 in adults is only 2.4 micrograms per day. Why did the dosage need to be so high to produce improvement in symptoms?

As many of you know, the sublingual hydroxocobalamin dosage in the Simplified Methylation Protocol today is comparable to the injected dosages that Drs. Lapp and Cheney found to be necessary, still very high compared to the RDA dosage, and this question has remained. (I note that high dosages of B12 are also used in autism, which shares much of the same pathophysiology with ME/CFS.)

O.K., in 2011 a paper was published by two researchers in Korea, Jeong and Kim. The abstract is pasted below.
The research they report was actually done on a bovine (cow) B12-processing complementation group and cyanocobalamin. However, the human complementation group is very similar, and I suspect that the results will also be similar for other forms of B12 than cyanocobalamin.

They studied the CblC complementation group. This is part of the B12 processing pathway that is found inside all cells. When a form of B12 comes into a cell from the blood by the usual transcobalamin route, it is bound to CblC, and its beta ligand (cyano-, methyl-, or adenosyl-) is removed. Then it is sent on to be converted back to methylcobalamin or adenosylcobalamin as needed by the cell.

In order for this processing to happen, the CblC complementation group must first bind the B12 form. The strength of binding is called the affinity (Kd), and it is measured in concentration units. The higher the affinity, the lower the Kd. It turns out that the bare CblC complex has a relatively low affinity for B12, compared to the concentration of B12 in the cells, and this would be unfavorable for the necessary binding, and would tend to lower the reaction rate.

What these researchers found is that normally glutathione binds to CblC, and in doing so, it increases the affinity of CblC for B12. And it does so by a whopping amount--over a factor of a hundred!!

Turning this around, if glutathione becomes depleted, as in ME/CFS and autism, the affinity of CblC for B12 is going to drop substantially. I suggest that the glutathione depletion, combined with its major effect on this affinity, is the reason the B12 dosage must be so high in treating ME/CFS and autism.

Best regards,

Rich


Biochem Biophys Res Commun. 2011 Aug 26;412(2):360-5. Epub 2011 Jul 29.

Glutathione increases the binding affinity of a bovine B?? trafficking chaperone bCblC for vitamin B??.

Jeong J, Kim J.

School of Biotechnology, Yeungnam University, 214-1 Dae-dong, Gyeongsan-si, Gyeongsangbuk-do 712-749, Republic of Korea.

Abstract

Intracellular B(12) metabolism involves a B(12) trafficking chaperone CblC that is well conserved in mammals including human. The protein CblC is known to bind cyanocobalamin (CNCbl, vitamin B(12)) inducing the base-off transition and convert it into an intermediate that can be used in enzyme cofactor synthesis. The binding affinity of human CblC for CNCbl was determined to be K(d)=?6-16 ?M, which is relatively low considering sub-micromolar B(12) concentrations (0.03-0.7 ?M) in normal cells. In the current study, we discovered that the base-off transition of CNCbl upon binding to bCblC, a bovine homolog of human CblC, is facilitated in the presence of reduced form of glutathione (GSH). In addition, GSH dramatically increases the binding affinity for CNCbl lowering the K(d) from 27.1 0.2 to 0.24 0.09 ?M. The effect of GSH is due to conformational change of bCblC upon binding with GSH, which was indicated by limited proteolysis and urea-induced equilibrium denaturation of the protein. The results of this study suggest that GSH positively modulates bCblC by increasing the binding affinity for CNCbl, which would enhance functional efficiency of the protein.

Copyright 2011. Published by Elsevier Inc.

PMID: 21821010
 

boo85

Senior Member
Messages
178
thank you lotus. I feel like the overmethylation might do permanent damage to my brain...

What supplements should I take along with b12 to help reduce overmethylation?
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi,
I just read your first post...the low B12 symptoms are better now, but the new symptoms do sound like overmethylation, or excess B12.

There are many people who only need monthly injections to heal. It may be better to take a break, and reduce the dosage and frequency.

I take Niacinamide,( it's a non-flushing niacin, B3), to help overmethylation symptoms. It's very calming. I usually take it at bedtime, but also during the day if I need it. I take 250 mgs. at a time, but for some, 50 mgs. works fine. Others may need more.

Even though there are folks here who take huge amounts of B12, there are many who respond better to very small dosages, 50-250 mcg. of a sublingual daily.
 

Victronix

Senior Member
Messages
418
Location
California
I think it is overmethylation because I feel anxious, paranoid, hyper sensitive senses (especially smell), mood changes, and just generally not being myself. It's really hard to get through.

Those are the exact symptoms I get from taking methylfolate and they are all alleviated with enough potassium gluconate. Without enough potassium, all of those symptoms come back in a matter of hours.

I don't consider this "overmethylation".

I am taking a miniscule amount of mfolate, about 50 mcg or less. How is 50 mcg "overmethylated"?

Some people are incredibly sensitive and there is a reason for that. I get the same extreme response from folinic acid because I am able to convert it. Backing away from mfolate or folinic to instead take folic acid is not the solution to coping with start-up symptoms. Even at this tiny dosage of mfolate I have had benefits that I could never get from folic acid.

Taking enough potassium to offset the feelings of having "too much" is key to being able to stay on a protocol for people who are sensitive.

Potassium is a different issue all together. I think I have that under control - when I take b12 practically the only foods I eat are potassium and I take potassium salt.

Food potassium is not enough. I thought I had it under control also, but I did not.

Many on here taking potassium are taking over 1000 mg/day.

How much are you taking?

However, if you are already getting hydroxy shots weekly, it may not be worth the effort of taking methyl B-12 on top of that. You could consider waiting until the shots are only once a month.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Hydroxocobalamin works similarly to niacin (and niacinamide) in that it uses up methyl groups/SAMe which then reduces methylation. This is partially why it's better tolerated by some. I think another reason it might be better tolerated is that the conversion to methylcobalamin probably happens gradually rather than hitting you all at once. I'm not sure if there are other reasons besides the two I mentioned as far as why it's tolerated better. Some people have a shortage of methyl groups (sometimes referred to as undermethylators) and they do better with methylcobalamin (rather than hydroxocobalamin).
 

Lotus97

Senior Member
Messages
2,041
Location
United States
This is from dbkita. I agree that simply supplementing with extra potassium isn't going to necessarily solve all your problems
Overmethylation is a very,very real thing. It is basic biochemistry. People focus on methylation via the cycle, but in fact methylation via SAMe (mostly) is a huge regulator of gene expression, even silencing certain genes. Too much methylation can have HUGE effects on the body. Period. Anything to the contrary is just ... wrong.

That being said overmethylation is NOT generally the province of b12 generally since even the methyl b12 variant has a very short half-life. Some people on these forums take massive doses to force it to high overpowering concentrations in the CNS to help them with fundamental neurological issues.

On the other hand taking too much SAMe directly, too much TMG and for sure too much 5mthf or even folinic acid for many (or even folic acid for like 40% of the population) can overmethylate you. For those who lack the C677T SNP, riboflavin can also really spark methylation. Those with A1298C mutations are susceptible to overmethylation since the SAMe negative feedback mechanism on MTHFR via allosteric binding is inhibited (which can be really bad). P5p is also a contributor and can spark those with trans-sulfuration problems. B12 has much less impact on overmethylation (though mb12 will reduce melatonin and can cause some insomnia regardless of 'startup' effects).

Personally I overmethylated myself for two years taking too much methylfolate, TMG, r5p, p5p and even some SAMe (the last of which made me understand clinically that I was hammering myself wrongly). And no it was no detox or start-up effects. That tune gets real old real fast for some of us. And it wasn't low potassium either since I got 10 grams per day in diet and supplements. It was simply over-methylation.
 

Jarod

Senior Member
Messages
784
Location
planet earth
boo85

Can you post a link for where you got your defintion "overmethylation" please?

Do you have your 23andme results by any chance? Good to post them in your signature if you do have them so we can all try to understand this methylation treatment better.

With a genetic test, your potential for success may be improved. I'm not trying to give advice; just gathering information.

Jarod
 

Victronix

Senior Member
Messages
418
Location
California
This is from dbkita. I agree that simply supplementing with extra potassium isn't going to necessarily solve all your problems

dbkita was taking huge dosages of numerous different methylators simultaneously, which is very different from what we are talking about here.

As he says: "That being said overmethylation is NOT generally the province of b12 generally since even the methyl b12 variant has a very short half-life."

Given those two points, it is important to probe for whether enough potassium is really being taken to alleviate the symptoms, or whether, like me, a person is hesitant or afraid to take a lot of potassium -- which is very understandable given all the warnings from all directions about it -- and simply has been unwilling to go far enough with that.

At the least, anyone taking B-12 needs to be taking the other Bs as well to balance things out. I'm not sure that's happening here. So there is no need to rush to reject mB-12 in place of hydroxy when the various issues that we already know will lead to problems -- not taking other Bs, not taking enough potassium, etc. -- are not yet addressed.

Better to suggest someone back off and start with a better balance of factors than to push away methyl B-12 altogether.

Some people have a shortage of methyl groups (sometimes referred to as undermethylators) and they do better with methylcobalamin (rather than hydroxocobalamin).

What is the evidence for this? Is this something Rich or Fredd said?
 
Messages
21
Location
near LA, California
is it possible to repair with b12 without having to put up with overmethylation?

I know I need B12 to repair my body and brain, but the methylation is just getting too much.

If I (hypothetically) ate the same amount of B12 each day, but got it through natural sources, such as fried liver, would that prevent or slow down methylation?
/
Dr. Nancy Mullan, a peer of Dr. Amy Yasko, says that no one should suffer side effects from taking methylation supplements. They want you to reduce your supplement intake until there are no negative effects. From there, you can work up slowly. Dr. Mullan, in a recent webinar, said that adults tend to be much more sensitive to supplements then children. She recommends starting a supplement with only the amount that fits on on the tip of one tine of a fork. If that's still too much, mix it with water and apply it to the skin. Niacin, usually in amounts as small as 30mg, will slow down methylation per Dr. Ben Lynch but overall, I think you should lower the amount of methylfolate you take.
 

Victronix

Senior Member
Messages
418
Location
California
/
Dr. Nancy Mullan, a peer of Dr. Amy Yasko, says that no one should suffer side effects from taking methylation supplements. They want you to reduce your supplement intake until there are no negative effects. From there, you can work up slowly. Dr. Mullan, in a recent webinar, said that adults tend to be much more sensitive to supplements then children. She recommends starting a supplement with only the amount that fits on on the tip of one tine of a fork. If that's still too much, mix it with water and apply it to the skin. Niacin, usually in amounts as small as 30mg, will slow down methylation per Dr. Ben Lynch but overall, I think you should lower the amount of methylfolate you take.

I agree with taking it slow and carefully and use lower amounts if one feels overwhelmed.

Does Dr. Yasko or Lynch recommend taking potassium, or point out that a potassium deficiency may happen and may be the cause of the sufferiing?

Last I saw, Dr. Lynch was asking someone how they knew they got low potassium, and didn't seem to even believe that was a factor. I got tested and I saw that it went very low. Another person on here has also tested their potassium very carefully and is reporting on that now, showing clearly that it is going down with methylation. Low potassium should not be a reason to stop taking methylation supplements when taking potassium will correct those feelings of suffering.

Having worked with children, I can easily see how anyone working with children with autism would likely be looking for ways to avoid any side effects leading to them being unwilling to continue taking the supplements. It is hard enough for an autistic child to cope at all, let alone with taking a supplement that could lead to low potassium.

That's a different situation from adults without autism who may have decades of nerve damage to repair.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
dbkita was taking huge dosages of numerous different methylators simultaneously, which is very different from what we are talking about here.
Yes, and he was also taking 9000 mg of potassium.
Given those two points, it is important to probe for whether enough potassium is really being taken to alleviate the symptoms, or whether, like me, a person is hesitant or afraid to take a lot of potassium -- which is very understandable given all the warnings from all directions about it -- and simply has been unwilling to go far enough with that.
I'm not convinced that an extra need for potassium is a sign of "healing" and neither was Rich
As you know, I have suggested a somewhat different approach to treating the methylation cycle partial block than Freddd has suggested.

When high dosages of methylfolate and methyl B12 are taken together, the cells are no longer able to control the rate of the methylation cycle, and it becomes overdriven.

One result of this is a rapid buildup of folates in the cells, because of the rapid production of tetrahydrofolate by the methionine synthase reaction.

Tetrahydrofolate is readily converted to the forms of folate needed to support DNA and RNA synthesis, and this releases cells from a block at the S phase of the cell cycle.

They rapidly start dividing, and this produces a strong demand for potassium.

As Alex has noted, it has been shown that the intracellular potassium levels are low in CFS (likely because of an ATP deficit at the membrane ion pumps, due to mito dysfunction, in turn due to primarily to glutathione depletion), so there is no reserve there.

The result is that the plasma level of potassium drops, and that accounts for the tachycardia.

Note that another effect of overdriving the methylation cycle is a further drop in glutathione, as less homocysteine is available to go toward cysteine synthesis.

There seem to be more and more people who are exhibiting effects of overdriving the methylation cycle from taking high dosages of methylfolate and methyl B12 together. I do not recommend this approach.

Best regards,

Rich
What is the evidence for this? Is this something Rich or Fredd said?
Adreno and Rich have both talked about hydroxocobalamin using up methyl groups/SAMe. This is from Dr. Ben about niacin also using up SAMe/methyl groups:
One has to keep in mind that methylation is dynamic and one can shift quickly from under and overmethylated – in a matter of an hr it is possible – or less – especially if utilizing potent nutrients such as methylfolate or methylcobalamin.

We have to keep in mind that there may be other mutations on board – such as COMT. Niacin speeds up COMT which is one reason why it also may be useful. If one speeds up COMT, then things like dopamine and epinephrine get broken down faster. Niacin also is a ‘sponge’ for methyl groups, namely SAMe, because SAMe is required to metabolize niacin.
This is from Rich about the pros and cons of hydroxocobalamin and methylcobalamin
I had also considered changing the form of B12 to methylcobalamin. Some PWMEs do need to use this form, particularly if their glutathione and/or S-adenosylmethionine are very low. However, use of hydroxocobalamin is a “gentler” approach to lifting the partial methylation cycle block, and many PWMEs need such an approach. Use of hydroxocobalamin also keeps the cells in control of the rate of the methylation cycle, preventing it from being overdriven, which slows the rise of glutathione. So I have decided to stay with hydroxocobalamin as the first form of B12 to try. For people who do not get a response from the SMP within a couple of months, switching to methylcobalamin would be an option to try. Another option would be to try adding some adenosylcobalamin (dibencozide). However, I do not favor raising the overall dosage of B12 very much above 2,000 micrograms per day, and especially not when it is combined with dosages of methyfolate that are much above the RDA range of 400 to 800 micrograms per day. This combination can overdrive the methylation cycle and hinder the rise of glutathione.
and also how some people have "a shortage of methyl groups".
Some people have had good experience with methylcobalamin. It can be especially helpful if a person has a shortage of methyl groups
At the least, anyone taking B-12 needs to be taking the other Bs as well to balance things out. I'm not sure that's happening here. So there is no need to rush to reject mB-12 in place of hydroxy when the various issues that we already know will lead to problems -- not taking other Bs, not taking enough potassium, etc. -- are not yet addressed.

Better to suggest someone back off and start with a better balance of factors than to push away methyl B-12 altogether.
Since Boo experiences the symptoms with only 250 mcg methylcobalamin I'm not sure what you mean by "back off".
That's a different situation from adults without autism who may have decades of nerve damage to repair.
Maybe we're talking about two different things. I'm talking about methylation. There was a methylation study done on Dr. Neil Nathan's CFS/ME patients using hydroxocobalamin. Based on the results of the study I have no problem recommending hydroxocobalamin.
http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf
index.php

index.php

This is from Dr. Neil Nathan who ran the study and whose CFS/Fibromyalgia patients were used:
http://www.prohealth.com/fibromyalgia/library/showarticle.cfm?libid=16138
The Project Went as Follows

• I took 30 patients (none of whom were part of the first pilot project), all of whom I had treated with Dr. Teitelbaum’s program, all of whom had made some progress (ranging from 30% to 70% improvement) but were still not where they needed to be health-wise.

• All had their methylation chemistry measured prior to the start of the supplements(3), and all took the supplements for the next 6 months, while we measured their chemistry and they reported on their health status throughout. All patients took exactly the same supplements.

• After six months, we individualized the patients’ treatment program based on their chemistry results, and continued to follow their progress and monitor their chemistry.

The Results Are Exciting(4)

Several important questions are addressed and answered:

1. First of all, do we find that fibromyalgia and chronic fatigue patients do, indeed, have abnormal methylation chemistry? YES

The initial methylation testing showed that:

• Every single patient had abnormal results.

• 83% started with low glutathione levels.

2. Can we demonstrate that taking these supplements raises those numbers into the normal range? YES

3. Does this rise in glutathione and SAM correlate with clinical improvement? YES

We had our patients rate 5 important areas of function on a 1-10 scale. This included energy, sleep, pain, cognitive function (memory, focus, concentration, and “brain fog”), and overall sense of well being.

We can demonstrate progressive improvement in all of these areas in most patients, over the 9 months of the study:

Sleep improved from an initial score of 4.7 to 6.0, with 73% of patients reporting improvement.

Energy improved from an initial score of 3.9 to 6.6, with 86% of patients reporting improvement.

Pain improved from an initial score of 5 to 6.6, with 80% of patients reporting improvement.

Cognitive function improved from an initial score of 5.0 to 6.3, with 73% reporting improvement.

Overall sense of well being improved from 4.3 to 6.8, with 79% reporting improvement.

4. How much better were our patients? A LOT!

It took an average of 5 to 6 weeks before the supplements started to work, and we can clearly show that the longer patients stayed on this program, the better they got.

• Not everyone got better, but the vast majority (86%) improved.

• The average improvement was rated by our patients as 48%.

• And notably, 27% reported so much improvement that they now felt essentially well! Several who had not worked in over 5 years were able to resume full-time employment without difficulty.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
boo85
Most people are at least able to tolerate the starting dosages in Rich's protocol, but some people aren't (myself included). I'm not sure if you'll need to go to the lengths of Determined, but this is what determined did as far as doing things low and slow:
Several years ago I told Rich that, if it were possible to start the methylation supplements with just ONE molecule, I would do it! Well, I didn't start then.

But in late January, I decided to start FolaPro and methylcobalamin at miniscule doses.

I should say that I have a very long history with extreme multiple chemical sensitivities and food intolerances (could only eat a handful of foods, and I was basically a prisoner in my home to avoid chemical exposures for a few years) so I have lots of experience getting HUGE reactions from tiny specks of medications and supplements scraped off of a tablet, or emptied from a capsule.

The weakness and fatigue component of this illness started about 20 years ago. The most significant improvement I got was when I was treated with chemotherapy (Rich has pointed out that folinic acid is infused along with the meds). I have also been helped by doxycycline.

So, in late January of this year, I opened a 1,000 mcg capsule of methylcobalamin, removed a speck, and broke off a very small fraction of a Folapro tablet. I emptied both of these into one cup of water. Then, I measured a quarter teaspoon and put it under my tongue. I could only hold it for a few seconds and I have had to stop this sublingual method because my bottom teeth would ache and ache.

To give some perspective on just how small a dose this is, I have only used 4 FolaPro tablets since I began 3 months ago.and realize, that all but approximately 1/200th of that ended up down the drain!

I know that this sounds odd and perhaps unbelievable. But I have a difference in energy. Im not sure where my boundaries are for weakness/fatigue. This in itself is very unusual since most days in the past 20 years I have been right at or even beyond that boundary.

Its very exciting for me but I am resisting the impulse to increase the dose. The idea that some kind of switch has been flipped really resonates for me. I am cautiously increasing my exercise, without forcing it. Usually, when I have walked my dogs, I have been grateful for their constant stopping and sniffing. Now, I find that I am impatient with them, and try to walk without them so I can go faster(!!!). I have even experienced muscle soreness from walking faster and yet I have NOT experienced PEM. Wow.

Rich, I want to thank you for all the information you have provided. I have been following your ideas for years now; I just wish I had acted sooner. The reason I am writing this is to encourage those who may be afraid to gamble with their current state of health. I have enjoyed a half life for several years and I didnt want to risk it on something that could potentially make me feel worse, even for a while. I believe that starting at a VERY small dose is a rational strategy for others like me.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
boo85

Can you post a link for where you got your defintion "overmethylation" please?

Do you have your 23andme results by any chance? Good to post them in your signature if you do have them so we can all try to understand this methylation treatment better.

With a genetic test, your potential for success may be improved. I'm not trying to give advice; just gathering information.

Jarod
I don't want to discourage anyone from getting their SNPs tested, but it's worth mentioning that Rich didn't think SNPs were always a good indicator of how a person would respond to methylation supplements. I was kind of surprised to hear that since Rich seemed very knowledgeable on the subject. In the study he and Dr. Nathan conducted they tested everyone's SNPs and also ran everyone's Methylation Pathways Panel at 0 months, 3 months, and 6 months so he is basing his opinion on a lot of data. This is from August 2012:
(I think this was before 23andme lowered their price to $99. Maybe he would have the same answer, but the methylation pathways panel costs $299 which is why I mention it)
My approach in recent years has been to suggest the simplified protocol for everyone, regardless of SNPs, and then try to deal with whatever issues arise. Many people do not have the finances to afford the nutrigenomic panel, and prefer just to try the treatment. Sometimes this pays off. Other times, more work is needed.

If people have the resources to run one test, I prefer the Health Diagnostics methylation pathways panel.

When I see the results of the Health Diagnostics methylation pathways panel on someone who has also run the nutrigenomic panel, the results in the biochemistry don't always match what one might expect on the basis of the SNPs. I prefer to go with the actual biochemistry. The SNPs are helpful for showing tendencies, but they aren't always very predictive.

Best regards,

Rich
 

determined

Senior Member
Messages
307
Location
USA: Deep South
Hi all,
I have been away for quite a while. I've been wanting to get back to update you on my progress with my methylation strategy (Lotus97 linked it a few posts up.....). I am still maintaining both my method/dosage of methylation supplements AND my improvement in stamina/energy. I would not say I have the energy/stamina levels of a normal person by any means, but I don't consider it my "limiting" symptom anymore.

I remain convinced that my teeny, tiny dosage is more like an inoculation than a replacement dosage. I believe it's possible that the "almost homeopathic dosage" is modulating my immune response in some way.

When I started the supplements, I had a significant increase in chemical sensitivity. I would say it's still higher than it was, but I consider this a reasonable trade-off. Pain is my worst problem now, often leading to taking medication, which makes me more chemically sensitive. And I really have to watch my stress levels or I can get VERY anxious.

I still miss Rich so much. I guess that's the reason I haven't been around...... :(
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Hi all,
I have been away for quite a while. I've been wanting to get back to update you on my progress with my methylation strategy (Lotus97 linked it a few posts up.....). I am still maintaining both my method/dosage of methylation supplements AND my improvement in stamina/energy. I would not say I have the energy/stamina levels of a normal person by any means, but I don't consider it my "limiting" symptom anymore.

I remain convinced that my teeny, tiny dosage is more like an inoculation than a replacement dosage. I believe it's possible that the "almost homeopathic dosage" is modulating my immune response in some way.

I still miss Rich so much. I guess that's the reason I haven't been around...... :(

I first stumbled across your post a couple weeks (or months?) ago. I admit I was (and still am skeptical) that dosages that low can work. Even though I admit that I'm not yet able to tolerate the starting dosages in Rich's protocol (which some consider too low). Since the post I quoted was at least a year or two old I thought maybe you had gradually increased your dose.
When I started the supplements, I had a significant increase in chemical sensitivity. I would say it's still higher than it was, but I consider this a reasonable trade-off. Pain is my worst problem now, often leading to taking medication, which makes me more chemically sensitive. And I really have to watch my stress levels or I can get VERY anxious.
That's interesting because I was also experiencing pain, anxiety, and MCS before I made a recovery. The things that helped me the most I believe were getting a lot of sleep (10-11 hours for over a year) and limiting activities and sources of stress. I was also eating healthy and taking a lot of supplements, but I starting relapsing 6+ months ago and I'm still eating healthy and taking a lot of supplements so I think sleep (and also limiting activities and sources of stress) were the most important.