• 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.

Was feeling steadily better.. but now not so much, confused?

renerdrat

Every teardrop is a waterfall
Messages
46
Location
Temecula
I've been following a methylation protocol for some time now, probably like 8 months, which I have definitely improved but.. Sometimes when I take too many vitamins I feel overwhelmed and depressed. I think I may have been overdoing it and that's why I've not been feeling very good.. Like I took quite a bit of liposomal vitamin c, b3 and other b vitamins while still taking my regular 10mg folate 2mg b12 100mg b6 and I felt like shit for a few days, lots of fatigue, back pain, diarrhea. I feel like it's detox but then I'm not sure if my body just reacted poorly?

I was following a somewhat low sulfur diet.. (but was still eating meat) which I thought may be helping, but now I'm not so sure, so I've added a handful of green veggies back in my diet. I thought maybe the reason I've been reacting to higher ammounts of vitamisn is because I'm not getting enough sulfur. I read that sulfur is super important... which before I thought your body could detox without it? I dunno there's just so much information out there.


Thing that's weird though is I could drink a bottle of vodka and wake up the next day feeling medicore... but when I take vitamins and stuff I feel even worse than if I would be hungover. Wouldn't drinking excessively cause similar reactions of a detox if that was the problem?
Also junk food doesn't even make me feel worse I feel fine after I eat, and my appetite is very low most the time. But I usually eat quite well. These are reasons that I am guessing that it's just my body healing but I'm not sure... and I feel confused and frustrated quite frequently because I'm not sure if I'm doing something wrong.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
How did you decide on what supplements to take? (I take many of the same things, but in much different proportions.)

A little insight on how you came to choose those supplements and dosages would be helpful - lab tests, SNPs, someone's protocol? Do you have known toxicities, and if so, what?

And a more exact list of what you're taking - you may be missing cofactors...
 

renerdrat

Every teardrop is a waterfall
Messages
46
Location
Temecula
How did you decide on what supplements to take? (I take many of the same things, but in much different proportions.)

A little insight on how you came to choose those supplements and dosages would be helpful - lab tests, SNPs, someone's protocol? Do you have known toxicities, and if so, what?

And a more exact list of what you're taking - you may be missing cofactors...

Well the original ones folate, b12,b6 was just by a website for methylating, forgot which. I read that niacin could aid in symptoms and vitamin c I just ... dunno read it was good for you lol. I thought maybe I wasn't taking enough cofactors or something but I take a bcomplex every day, and around 600mg magnesium.
I also take small doses of choline and zinc
I have upregulation of cbs genes, which is why I thought I would eliminate sulfur...

Am I right in the idea that you can't detoxify properly without sulfur? I was under the impression previously that you could get by fine with b vitamins, vitamin c, other methyl donors. Which I mean I was still having some sulfur but not a significant amount.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
It might be wise to fine tune your protocol. 10mg folate is a lot. And too much (or too little) folate can be REALLY bad...

Taking someone else's protocol and applying it to you can have unintended consequences, as you're finding.

I have upregulated CBS, too, but find I need large amounts of B12 (10mg) and not so much 5-MTHF (1-2mg) even though I have both folate and methionine cycle SNPs. And I take 100mg of R5P and >200 of P5P a day. And 500mg niacinamide, no more. And 1mg each methionine and TMG.

Much different ratios of the cofactors than your protocol. I work with an excellent naturopath who's done extensive lab tests and tweaked my protocol to optimize it.

A Genova Diagnostics NutrEval test might be useful in sorting things out for you, as genes only give you a tendency to biochemical behaviors, but environmental factors, like diet, toxins, gut health, and infections can dramatically alter your needs.

Sulfur and eating adequate protein are essential for detoxing. You need amino acids to make glutathione, which contains a lot of sulfur. Many of us have increased needs for aminos, as suggested by recent research.

It's managing the sulfur you have that's important.

I have a lot of toxicity which my doctor and I are trying to get rid of by ramping up methylation and other detox processes. At times, my body struggles with this load and I start emitting sulfur.

The transsulfuration pathway, which comes after CBS, requires molybdenum, B1, and taurine to work, so I've had to bump up intake of these to handle the load. And eat plenty of fiber (vegetables) and take activated charcoal and curcumin when I have a minor sulfur crisis.

Radio has written a lot of interesting things about sulfur here on PR, and there's an interesting discussion of sulfate/oxalate balance over on BeyondMTHFR.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Thing that's weird though is I could drink a bottle of vodka and wake up the next day feeling medicore... but when I take vitamins and stuff I feel even worse than if I would be hungover. Wouldn't drinking excessively cause similar reactions of a detox if that was the problem?

Also junk food doesn't even make me feel worse I feel fine after I eat, and my appetite is very low most the time. But I usually eat quite well. These are reasons that I am guessing that it's just my body healing but I'm not sure... and I feel confused and frustrated quite frequently because I'm not sure if I'm doing something wrong.

Ha, ha. I drink a little now and then, don't feel horrible the next day like when I was younger (pre-illness) with a wicked hangover. I actually sleep ok, and don't need to take lots of meds if any.

I am not sensitive to meds/supplements, at least have not made any link. Do notice on days where I am much more active (mild to moderate exercise) I do not get to sleep easily. Tends to happen more the following night. I do take a day of to rest.

I splurge with empty calories on days of exercise, some before, and sometimes lots afterwards, increases my appetite a lot. Hungry rather often normally, trying to see if I can curb that, so I can keep from gaining weight and
perhaps not feel the need to be so active, to try to keep my weight in check.

GG
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
I took quite a bit of liposomal vitamin c, b3 and other b vitamins while still taking my regular 10mg folate 2mg b12 100mg b6 and I felt like shit for a few days, lots of fatigue, back pain, diarrhea.

The B3 - niacin - slows down methylation. So when you say you took "quite a bit", we have no way of knowing how much you took but it could very well be factor in why you felt bad. It may have slowed methylation down too much.

Also, what other B's did you take? e.g., I don't do well on extra B2. It makes me feel bad, so I don't take it.

B1 gave me a good boost of energy for a day, and then dropped me down quite hard. It's a long story but I figured out that it was causing my phosphorous levels to drop, hypophosphatemia - which can cause severe fatigue. I learned about foods high in phosphorous, started taking kefir and it helped a lot.

Also, are you aware of potassium issues in regard to B12 and folate? It's huge for many of us. See http://forums.phoenixrising.me/index.php?threads/are-you-feeling-bad-on-methylation-supps-or-starting-methylation-important-info-re-low-potassium.49540/

So there are many possibilities for why you felt like crap after taking these things. It's really best to only start one new thing at a time, so you can tell what is doing what to you - otherwise it's next to impossible to figure out. And also, start at a low dose, and go slow, so you can hopefully stay on top of any reactions.

If I were you, I would go back to when you felt halfway decent, try to get back on that protocol, and then only introduce one new thing at a time, very slowly.

Also, do you take a B complex? That might be a better way to go than adding a bunch of individual Bs on top of your folate, B12 and B6. A good one is B Right by Jarrow.
 
Last edited:

renerdrat

Every teardrop is a waterfall
Messages
46
Location
Temecula
It might be wise to fine tune your protocol. 10mg folate is a lot. And too much (or too little) folate can be REALLY bad...

Taking someone else's protocol and applying it to you can have unintended consequences, as you're finding.

I have upregulated CBS, too, but find I need large amounts of B12 (10mg) and not so much 5-MTHF (1-2mg) even though I have both folate and methionine cycle SNPs. And I take 100mg of R5P and >200 of P5P a day. And 500mg niacinamide, no more. And 1mg each methionine and TMG.

Much different ratios of the cofactors than your protocol. I work with an excellent naturopath who's done extensive lab tests and tweaked my protocol to optimize it.

A Genova Diagnostics NutrEval test might be useful in sorting things out for you, as genes only give you a tendency to biochemical behaviors, but environmental factors, like diet, toxins, gut health, and infections can dramatically alter your needs.

Sulfur and eating adequate protein are essential for detoxing. You need amino acids to make glutathione, which contains a lot of sulfur. Many of us have increased needs for aminos, as suggested by recent research.

It's managing the sulfur you have that's important.

I have a lot of toxicity which my doctor and I are trying to get rid of by ramping up methylation and other detox processes. At times, my body struggles with this load and I start emitting sulfur.

The transsulfuration pathway, which comes after CBS, requires molybdenum, B1, and taurine to work, so I've had to bump up intake of these to handle the load. And eat plenty of fiber (vegetables) and take activated charcoal and curcumin when I have a minor sulfur crisis.

Radio has written a lot of interesting things about sulfur here on PR, and there's an interesting discussion of sulfate/oxalate balance over on BeyondMTHFR.

thank you for this detailed response.. I guess I just can't afford any type of holistic doctor to see right now, all I have is medi-cal so I just use whatever information I find online. Before I even started the protocol I was taking just methylfolate and quite a bit of it so I guess that's why I just feel safe taking as much as I do but I should maybe reconsider that.

I'm gonna start taking more molybdenum, b1 and taurine and see how I do since I actually have all those on hand. For some reason I thought b12 was also part of transfulfuration pathway. But gonna try upping my b12 though anyway since I was taking a 5mg tablet for quite a while and then ran out and bought just some 1mg tabs and just didn't bother taking 5 of them a day.

I started taking some magnesium sulfate yesterday and don't feel bad at all today, I think even better. So yeah I'm not gonna limit my sulfur intake like I was.

Thanks for responding, I'm gonna try tweaking my regime and do a little more research and see how I do.
 

renerdrat

Every teardrop is a waterfall
Messages
46
Location
Temecula
The B3 - niacin - slows down methylation. So when you say you took "quite a bit", we have no way of knowing how much you took but it could very well be factor in why you felt bad. It may have slowed methylation down too much.

Also, what other B's did you take? e.g., I don't do well on extra B2. It makes me feel bad, so I don't take it.

B1 gave me a good boost of energy for a day, and then dropped me down quite hard. It's a long story but I figured out that it was causing my phosphorous levels to drop, hypophosphatemia - which can cause severe fatigue. I learned about foods high in phosphorous, started taking kefir and it helped a lot.

Also, are you aware of potassium issues in regard to B12 and folate? It's huge for many of us. See http://forums.phoenixrising.me/index.php?threads/are-you-feeling-bad-on-methylation-supps-or-starting-methylation-important-info-re-low-potassium.49540/

So there are many possibilities for why you felt like crap after taking these things. It's really best to only start one new thing at a time, so you can tell what is doing what to you - otherwise it's next to impossible to figure out. And also, start at a low dose, and go slow, so you can hopefully stay on top of any reactions.

If I were you, I would go back to when you felt halfway decent, try to get back on that protocol, and then only introduce one new thing at a time, very slowly.

Also, do you take a B complex? That might be a better way to go than adding a bunch of individual Bs on top of your folate, B12 and B6. A good one is B Right by Jarrow.
Thanks for the response

Well I took like 500mg which I usually only take 50mg a day. As far as why.. I'm not sure I guess I just think sometimes that I need more of something, usuaslly after reading about certain symptoms. I do take a b complex regularly but also will add more b vitamins

I have looked into potassium, and I do take it sometimes but not everyday.
Never thought about phosphorous since I just don't hear about it but makes sense that it would be an issue, especially since I will sometimes drink excessively which is another issue altogether.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
thank you for this detailed response.. I guess I just can't afford any type of holistic doctor to see right now, all I have is medi-cal so I just use whatever information I find online. Before I even started the protocol I was taking just methylfolate and quite a bit of it so I guess that's why I just feel safe taking as much as I do but I should maybe reconsider that.

I'm gonna start taking more molybdenum, b1 and taurine and see how I do since I actually have all those on hand. For some reason I thought b12 was also part of transfulfuration pathway. But gonna try upping my b12 though anyway since I was taking a 5mg tablet for quite a while and then ran out and bought just some 1mg tabs and just didn't bother taking 5 of them a day.

I started taking some magnesium sulfate yesterday and don't feel bad at all today, I think even better. So yeah I'm not gonna limit my sulfur intake like I was.

Thanks for responding, I'm gonna try tweaking my regime and do a little more research and see how I do.
Educating yourself would improve your odds of success mightily. Otherwise, you really risk unintended consequences.

I learned a lot by reading Amy Yasko's methylation explanations. They're a little out of date, but give a foundation you can build on.

I also found Heartfixer, Dr Robert's explanation. Then, on this site, look up Rich Van Konynberg Sweden and 2011 - he gave a presentation to a group of doctors and you can download the slides. Ben Lynch has some good videos and blogs, too.

Understanding how the moving parts work and learning from the various experts different points of view will help you start to get the hang of things.

Magnesium sulfate is a great laxative, but not a great choice otherwise. Magnesium malate, glycinate, or taurate are all good choices. Be wary of arsenic contamination common in many cheap magnesium supplements.

Next, too much folate can promote cancer. So can too little. It's pretty impossible to OD on B12, though. One strategy is to get the methionine cycle going with adequate B12, then add folate.

The B complex can fill in the other Bs, though you may need more riboflavin or B6. And B1, molybdenum, and taurine. You might also need TMG, SAMe, or methionine.

Also, please see if you can get lab testing done. MediCare will cover the Genova Diagnostics NutrEval, I'm not sure about MediCal, but worth a try.
 
Messages
15,786
I learned a lot by reading Amy Yasko's methylation explanations. They're a little out of date, but give a foundation you can build on.
Most of Yasko's claims regarding specific SNPs are unsubstantiated, and some of them are completely wrong. Apparently her explanations of the methylation cycle in general are also flawed in some respects.

I also found Heartfixer, Dr Robert's explanation.
Unless things have changed recently, he repeats much of the misinformation originating with Yasko.
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Most of Yasko's claims regarding specific SNPs are unsubstantiated, and some of them are completely wrong. Apparently her explanations of the methylation cycle in general are also flawed in some respects.


Unless things have changed recently, he repeats much of the misinformation originating with Yasko.
I said it was a place to start. The general tasks of the various cycles as she explains them are there. I suggested moving on to more "modern" information like richvank, Ben Lynch, etc. for a more comprehensive education.

I've been dealing with a family with serious health problems for 25 years. I've lost my father and sister, my mom is dying, my children have had serious issues, and my mother in law has had a serious mental illness for 50 years

The information that we and our very educated doctors have gleaned from 23andme over the past 5 years have opened the door to what went wrong with each of us and given us clues to fix those of us for whom the damage was not too great.

The theories we've learned about have been proven time and again with careful lab work and explained why our biochemistry doesn't respond as expected to logical interventions.

Maes' theories of oxidative and nitrosative stress, inadequate Kennedy pathway function, ammonia buildup, inadequate BH4 recycling and SOD production, upregulated CBS, glutathione depletion, inadequate transsulfuration pathway function, incredible toxicity, the methionine block, aberrant COMT metabolism of estrogen and dopamine... the list goes on... oh, and impaired folate metabolism, too...

Understanding the principles of what's going on helps us adjust our protocols as things shift due to environmental factors and interventions.

Dr. Yasko is certainly not the Bible of genomic, but I'm very thankful to her for giving me an initial framework to pin our last 5 years of learning on.

This is all very complex. Everything is not cast in stone. New discoveries are made all the time. Theories will be proven and disproven. The best we can do is work from a framework of knowledge and be flexible to examine new ideas that come our way.

Many of the "this doesn't work for me" reactions I've seen on this site are likely due to people trying the various ingredients in very random quantities without a good understanding of how the biochemical pathways work. So, the proportions are wrong, cofactors are missing, or they don't realize that one must work in order to unclog and optimize pathways.

We've had the opportunity to work with doctors over the past 8 years who are experts at it. It's been amazing to see how taking a step by step approach, working through the pathways methodically has caused dramatic changes in symptoms and outcomes.

And, every time the unexpected has happened, going back to our knowledge of our genes are behaving has provided insights that help us make mid course corrections for a better outcome.

It's powerful stuff and I'm thankful that there were people to help me learn about it, even though each resource wasn't perfect.
 
Messages
15,786
Dr. Yasko is certainly not the Bible of genomic, but I'm very thankful to her for giving me an initial framework to pin our last 5 years of learning on.
Except she's given you the wrong framework. Significant genetic upregulation of the CBS gene simply doesn't happen, for example.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
No, you might have certain symptoms which Yasko has attributed to CBS upregulations, but she is incorrect. Something else is causing those symptoms.
It's what's going on in the pathway that's important. Genes express themselves differently depending on environmental factors.

No matter what you or Dr. Yasko say, it seems that my CBS pathway is going really fast, faster than I can feed it at times. This is helpful to know in treating me. And, this same tendency runs in my family - we are all very toxic, which has caused serious health problems.

I don't really care to argue about whose theory is right... what's important is finding information that can inform the process of getting well.