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Help - I've overdone something re methylation and I don't know what

hb8847

Senior Member
Messages
432
Location
United Kingdom
As the title suggests I've made some errors regarding methylation supplements and I have no idea what's going on or how to fix it. Any help would be much appreciated.

The background to this is that I have SIBO and CFS, and have been getting a lot better after about 6 months on Ben Lynch's methylation programme. His advice is to start with his "Optimal Start" supplements which contain all the B vitamins (except B12 and Folate) and a combination of 'helpful' vitamins and cofactors, and also to take his "Optimal Electrolye" mix containing, amongst other things, potassium, magnesium, creatine and ribose. The advice is then to progress onto low levels of B12 and ultimately folate.

I haven't made it past stage one with the "Optimal Start" supplement because I haven't needed to - I'd been getting better on that all on it's own. And by getting better I mean significantly - my CFS, cognitive function, vision and bowel movements all improved concurrently and at roughly the same rate. And much of his other recommended supplements I cannot handle even the smallest amount. For example creatine, glutathione, B12 and B9 completely set me off with all the "overmethylation" symptoms outlined on his site - severe anxiety, insomnia, diarrhoea, bloating, acne, inflammation, brain fog, aching joints, and a tingling sensation throughout my body.

Anyway I was taking around 4 of these "Optimal Start" capsules per day and getting a lot better. The path though was far from smooth, and when symptoms flared I would often try some of the other supplements suggested on his site (hence why I tried the aforementioned glutathione etc). One that seemed to work OK was PhosphatidylCholine (PC), so I added that into my regular routine.

After about a month of taking this PC along with the Optimal Start I began to notice a worsening of my symptoms - more of the "overmethylation" symptoms I outlined earlier. I tried removing the PC but the Optimal Start on its own seemed to worsen things so I swapped it with the PC. For some reason, even though I didn't get better, I continued with the PC and eventually even upped the dose because I mistakenly thought it was helping.

The upshot of that is I ultimately tipped myself into what feels like permanent overmethylation, with all the aforementioned symptoms. I've come off the supplements and had to drastically limit my diet as food seems to be the real thing that sets this all off again (symptoms tend to calm after sleeping and then start up all over again once eating). Anything with Folate in it in particular seems to really worsen things. Too much protein (presumably methionine) doesn't seem to help either. Problem is this doesn't leave me with much.

Niacin I have tried but with limited success - Nicotinic Acid gives me the most INSANE flushing to the point where I worry about what it's doing to my health, and Niacinamide seems to take a bit of the edge off if I have really bad anxiety or insomnia but again it's fairly limited in its effect.

Right now I'm sort of wondering what the hell is going on with my biochemistry and what I can do if anything to fix it. My gut feeling is that the PC has really fired up overmethylation as it's a methyl donor, and eating methionine or folate fires everything up again to the point where it's too much for my body to handle or I'm lacking in some key cofactor which is giving me all these symptoms. But then I've read that Niacin really sorts out overmethylating, which isnt the case for me, and that in any case everything should calm down after a couple of days off the supplements, which again isn't my experience - it's been a month now and things are still just as f*cked up.

My plan now is to cautiously add back in the Optimal Start, seeing as it's what seemed to help in the first place, as well as tinker a bit with the diet by removing more of the protein. My options with the latter really are limited though.

If anyone can maybe shed some light on what the hell might be going on here I'd be eternally grateful. Thanks in advance.

PS. Regarding the SIBO, I'm aware that this is probably the root cause of my methylation issues (it inhibits the absorption of B12 and can itself produce excess folate) and I have no doubt it's a big factor in why my recovery has been so messed up. And ideally I would address this first, except that's just not an option - too long without the methylation supplements starts giving me some crazy autoimmune symptoms which are simply not bearable. As such I've been forced to put the SIBO stuff on the back burner temporarily while I get my methylation back up to scratch.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Niacin I have tried but with limited success - Nicotinic Acid gives me the most INSANE flushing to the point where I worry about what it's doing to my health

I struggled with methylation for about 2 years. I often mistakenly thought I was overmethylated when I was really undermethylated.

Both have similar symptoms for me but the main difference with overmethylation is I felt high anxiety, very energetic, less aches and pains and less depressed. With undermethylation, I still felt high anxiety, a lot of aches and pains, etc, but also tired and more depressed.

The reason I say this, is because if you are overmethylated, niacin will bring it down. Another thing that makes me think you might be undermethylated is you having such a strong reaction to niacin. The more overmethylated you are, the more niacin you should tolerate without flushing.


My plan now is to cautiously add back in the Optimal Start, seeing as it's what seemed to help in the first place

I feel like that's a good idea. There are many co-factors in that multi that support methylation.

Regarding PC. That stuff absolutely wipes me out, even at fairly low doses and it has nothing to do with methylation. It has to do with acetylcholine and how I react to it and PC raises acetylcholine. I take about 4 milligrams of methylfolate a day and 3 mg methylcobalamin. Which make a definite improvement in how I feel.

Many people here get a similar reaction as I do to anything that raises acetylcholine levels.
 

BeADocToGoTo1

Senior Member
Messages
536
Hi @hb8847
Barring any other malabsorption causes, are you able to handle whole eggs instead of PC supplements? I also do better with getting it (lecithin, choline, phosphatidylcholine) through food now and just added more eggs per day.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
I struggled with methylation for about 2 years. I often mistakenly thought I was overmethylated when I was really undermethylated.

Both have similar symptoms for me but the main difference with overmethylation is I felt high anxiety, very energetic, less aches and pains and less depressed. With undermethylation, I still felt high anxiety, a lot of aches and pains, etc, but also tired and more depressed.

The reason I say this, is because if you are overmethylated, niacin will bring it down. Another thing that makes me think you might be undermethylated is you having such a strong reaction to niacin. The more overmethylated you are, the more niacin you should tolerate without flushing.

Yes I guess this could be a factor. My gut feeling is it's unlikely to be undermethylation as there are some key symptoms I get with this (such as severe food intolerance) that I just don't have at the moment. Also so many of the symptoms are exactly what the Ben Lynch site says to expect from excess Methylfolate, namely:
  • irritability
  • insomnia
  • sore muscles
  • achy joints
  • acne
  • rash
  • severe anxiety
  • palpitations
  • nausea
  • headaches
  • migraines
  • nerves burning, stinging
  • runny nose
The only one of these I don't get is the runny nose, all the others seem to come along like clockwork, and seem to worsen significantly when I eat foods high in Folate. The Niacin issue is an odd one and is one that does make me think twice - perhaps rather than overmethylating there's some sort of cofactor I'm missing (as there seemed to be when I started the Optimal Start supplement) and the side effects of this mimic excess methylfolate? There's possibly another factor in that I've read SIBO can itself produce Folate which might explain some of it.

I feel like that's a good idea. There are many co-factors in that multi that support methylation.

Regarding PC. That stuff absolutely wipes me out, even at fairly low doses and it has nothing to do with methylation. It has to do with acetylcholine and how I react to it and PC raises acetylcholine. I take about 4 milligrams of methylfolate a day and 3 mg methylcobalamin. Which make a definite improvement in how I feel.

Many people here get a similar reaction as I do to anything that raises acetylcholine levels.

I tried the Optimal Start again at a low dose and altered my diet to include much less protein relative to plant based foods, and it seems to be going OK so fingers crossed it might be the solution. I can't help but feel I'm going to be spending this recovery continually be putting out fires but I suppose that's just the way it goes.

Thanks also for the advice re PC, I stopped that about a month ago. The reason I felt it might have been related to methylation is I get such a similar reaction to Creatine and according to this (link) they are both "Methyl Conserving", whatever that means. Both Methylcobalamin and Methylfolate completely set me off too.

Anyway thanks a lot for your advice, I'll definitely bear it all in mind.

Hugo
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Hi @hb8847
Barring any other malabsorption causes, are you able to handle whole eggs instead of PC supplements? I also do better with getting it (lecithin, choline, phosphatidylcholine) through food now and just added more eggs per day.

Hi BeADocToGoTo1,

I've been off eggs for a while as I for a long time I had bad histamine issues concurrent with the methylation issues (apparently the two are linked). I'm also staying off the PC for a while as I suspect it's what's pushed me into this current predicament but as much as possible I try to get nutrients from real food and am looking to add eggs back in as soon as possible.

Thanks for your advice,
Hugo
 

Busson

Senior Member
Messages
102
Regarding the SIBO, I'm aware that this is probably the root cause of my methylation issues (it inhibits the absorption of B12 and can itself produce excess folate) and I have no doubt it's a big factor in why my recovery has been so messed up. And ideally I would address this first, except that's just not an option - too long without the methylation supplements starts giving me some crazy autoimmune symptoms which are simply not bearable. As such I've been forced to put the SIBO stuff on the back burner temporarily while I get my methylation back up to scratch.

I've been off eggs for a while as I for a long time I had bad histamine issues concurrent with the methylation issues

If all other approaches fail then you might want to consider a long shot. There is a quite separate pathway of B12 deficiency which rarely gets discussed here, so it may seem strange at first.

(1) B12 is necessary not only for methyl group processing but also for processing methylmalonate. When methylmalonate rises it can also cause propionate to rise which is what causes symptoms. A large percentage of propionate in the body comes from bacteria active in the gut and perhaps your SIBO is upsetting their balance and causing more to be generated. An example of this is that one method of reducing propionate in people who have an excess but don't respond to other methods is to give an antibiotic to kill gut bacteria - although that could be problematic in your case.

(2) Furthermore, biotin assists propionate processing. However dietary biotin will be much reduced in the presence of avidin found in egg whites. In other words, eating a lot of egg whites could also cause propionate to rise to unwanted levels. Perhaps your reaction to eggs was not increased histamine but increased propionate although excess propionate, which has very many symptoms, is not associated with skin flushing.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
If all other approaches fail then you might want to consider a long shot. There is a quite separate pathway of B12 deficiency which rarely gets discussed here, so it may seem strange at first.

(1) B12 is necessary not only for methyl group processing but also for processing methylmalonate. When methylmalonate rises it can also cause propionate to rise which is what causes symptoms. A large percentage of propionate in the body comes from bacteria active in the gut and perhaps your SIBO is upsetting their balance and causing more to be generated. An example of this is that one method of reducing propionate in people who have an excess but don't respond to other methods is to give an antibiotic to kill gut bacteria - although that could be problematic in your case.

(2) Furthermore, biotin assists propionate processing. However dietary biotin will be much reduced in the presence of avidin found in egg whites. In other words, eating a lot of egg whites could also cause propionate to rise to unwanted levels. Perhaps your reaction to eggs was not increased histamine but increased propionate although excess propionate, which has very many symptoms, is not associated with skin flushing.

Hi Busson,

Thanks for this. I hadn't heard of the methylmalonate stuff, I'll bear it in mind going forward, particularly given my SIBO issues. Regarding the SIBO, yes I'm working to try and get rid of that but it's been very slow going - I must have a very high load because I get heavy herx reactions to even small doses of stomach acid drops, let alone antibiotics.

My plan with my doctor is to get my methylation up to a good level and once there gradually start to address the SIBO with medication. But yes it definitely makes things more difficult the fact that the SIBO is probably playing no small part in my methylation issues - there's a bit of a vicious cycle effect I'm not sure how to get around.

As for egg, I've not eaten that in years now but again I'll bear in mind this stuff with propionate if I continue to have issues with it once I re-add them back into my diet.

Many thanks,
Hugo
 

BeADocToGoTo1

Senior Member
Messages
536
...
  • irritability
  • insomnia
  • sore muscles
  • achy joints
  • acne
  • rash
  • severe anxiety
  • palpitations
  • nausea
  • headaches
  • migraines
  • nerves burning, stinging
  • runny nose...
I had all most of these due to nutrient deficiencies, which were due to malabsorption. But I also had many due to supplementation. You can take too much and/or have a reaction to one or more of the ingredients.

Have you looked into possible causes of malabsorption, beside SIBO? For example, Candida overgrowth, gallbladder issues, pancreas issues (e.g. exocrine pancreatic insufficiency), stomach acid issues. Have you checked through testing whether you are deficient (e.g. Genova FMV or Great Plains lab, or blood tests) or perhaps too high in a nutrient?

Have you tried to take a break from supplements for a while and just focus on a reset diet?

Have you had a hard, honest look at everything you eat, drink, water quality? Have you tried a temporary strict reset/elimination diet for the SIBO? What is your HbA1c?
 
Last edited:

hb8847

Senior Member
Messages
432
Location
United Kingdom
I had all most of these due to nutrient deficiencies, which were due to malabsorption. But I also had many due to supplementation. You can take too much and/or have a reaction to one or more of the ingredients.

Have you looked into possible causes of malabsorption, beside SIBO? For example, Candida overgrowth, gallbladder issues, pancreas issues (e.g. exocrine pancreatic insufficiency), stomach acid issues. Have you checked through testing whether you are deficient (e.g. Genova FMV or Great Plains lab, or blood tests) or perhaps too high in a nutrient?

Have you tried to take a break from supplements for a while and just focus on a reset diet?

Have you had a hard, honest look at everything you eat, drink, water quality? Have you tried a temporary strict reset/elimination diet for the SIBO? What is your HbA1c?


Re SIBO I have had a number of comprehensive stool tests and generally the results point to issues arising from SIBO. I'm also working with a very good doctor in the field.

I do also have low stomach acid which is a common byproduct of SIBO as it requires B12 and SIBO particularly prevents B12 absorption.

I have gone for long periods not taking any supplements and my diet is incredibly strict, partly on account of autoimmune and histamine issues arising from undermethylation. The issue I seem to have is that a low of foods promote methylation too - methionine is contained in most protein and folate in fruit, veg, nuts and seeds. Grains also arent an option as they trigger autoimmunity.

I am also on a strict SIBO diet and havent eaten sugar, Fodmaps, anything processed, gluten or dairy in over 5 years.

I haven't had nutrient checks or HbA1c - at the moment I'm going on what is recommended to me by my doctor. I might consider bringing some of them up at the next meeting.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Bit of an update to this in case anyone's interested.

I went ahead and tried taking the Ben Lynch "Optimal Start" supplements containing all the un-methylated B-vitamins.

Unfortunately it doesn't seem to have worked and if anything has made my symptoms worse, particularly the nerve tingling and insomnia which are both near constant throughout the night.

I have tried calming this down with Niacinamide, up to 2000mg daily, but it doesnt seem to make much difference, particularly to the nerve pain.

The fact this has all become more intense with the supplements suggests to me it is some form of over-methylation rather than under-methylation. I'm still none the wiser as to how to get on top of it though.

I've also pared back my diet considerably to see if it'll help - the past few days I've had nothing but quinoa and small amounts of chicken or fish, but again if anything food seems to increase the symptoms.

I'm not really sure what to do at this point. I feel there is something out there that will calm this down, I just don't know what. Most of the methylation-related supplements I've seen on sites like Ben Lynch or Chris Masterjohn I've tried to no avail (glutathione, creatine, nicotinamide, curcurmin, non-methylated Bvits, vitD, vitC, phosphatidylcholine). And many of these actively worsened the situation.

Going forward I'll probably just keep trying to experiment with the diet. The issue is most foods contain folate or methionine which further methylation, and most of the foods that don't I can't seem to handle. I know methylation needs methionine to function though so perhaps going without protein for a short while might help a bit, although that hasnt been my experience when I've done so before.

Another possibility is that my SIBO is just complicating things to such an extent that any recovery will be fraught with issues. Out of desperation I'm now flirting with the idea of really attacking it with antibiotics but this would go against my gastoenterologist's recommendations so I'm reluctant to do so.

Elsewhere I'll probably have to really search for methylation experts near to where I live. My current doctor assured me he was one but he's had little answer to this current issue and it's really becoming pretty unbearable.

I'll continue to update this with my progress in case anyone is ever in a similar situation in future.

Hugo
 
Last edited:

BeADocToGoTo1

Senior Member
Messages
536
Re SIBO I have had a number of comprehensive stool tests and generally the results point to issues arising from SIBO...
Hi @hb8847
It sounds very tough to balance!

Did the stool tests included the following?:
  • 24 hour fecal fat (to see how well you break down fat, indication of EPI)
  • Pancreatic elastase (pancreatic enzyme, indication of EPI)
Did you have the following blood test done?
  • Fasting trypsin (to see if you produce enough enzyme for protein breakdown)
If not, please talk to your doctor about them. The above should be covered by insurance. The Genova Diagnostics FMV is also a great one to do, but is rarely covered by insurance.
 

sflorence

Senior Member
Messages
134
Bit of an update to this in case anyone's interested.

I went ahead and tried taking the Ben Lynch "Optimal Start" supplements containing all the un-methylated B-vitamins.

Unfortunately it doesn't seem to have worked and if anything has made my symptoms worse, particularly the nerve tingling and insomnia which are both near constant throughout the night.

I have tried calming this down with Niacinamide, up to 2000mg daily, but it doesnt seem to make much difference, particularly to the nerve pain.

The fact this has all become more intense with the supplements suggests to me it is some form of over-methylation rather than under-methylation. I'm still none the wiser as to how to get on top of it though.

I've also pared back my diet considerably to see if it'll help - the past few days I've had nothing but quinoa and small amounts of chicken or fish, but again if anything food seems to increase the symptoms.

I'm not really sure what to do at this point. I feel there is something out there that will calm this down, I just don't know what. Most of the methylation-related supplements I've seen on sites like Ben Lynch or Chris Masterjohn I've tried to no avail (glutathione, creatine, methylfolate, nicotinamide, methylcobalamin, curcurmin). And many of these actively worsened the situation.

Going forward I'll probably just keep trying to experiment with the diet. The issue is most foods contain folate or methionine which further methylation, and most of the foods that don't I can't seem to handle. I know methylation needs methionine to function though so perhaps going without protein for a short while might help a bit, although that hasnt been my experience when I've done so before.

Another possibility is that my SIBO is just complicating things to such an extent that any recovery will be fraught with issues. Out of desperation I'm now flirting with the idea of really attacking it with antibiotics but this would go against my gastoenterologist's recommendations so I'm reluctant to do so.

Elsewhere I'll probably have to really search for methylation experts near to where I live. My current doctor assured me he was one but he's had little answer to this current issue and it's really becoming pretty unbearable.

I'll continue to update this with my progress in case anyone is ever in a similar situation in future.

Hugo


I am in the same exact situation as you. Have you figured out the solution yet?

Best wishes

Edit:

I just saw that this was posted a few days ago, lol.


Anyways, I would like to add something to the conversation.

I am actually experimenting with beef organs, and I am experiencing definite overmethylation from it.
I have had experiences with overmethylation from b12 in the past, and it feels identical. Beef organs have tons of folate, b12 and other cofactors in them. Even a small piece of raw liver seems to send me into the deep end...

So crazy how sensitive some of us are
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Hi @hb8847
It sounds very tough to balance!

Did the stool tests included the following?:
  • 24 hour fecal fat (to see how well you break down fat, indication of EPI)
  • Pancreatic elastase (pancreatic enzyme, indication of EPI)
Did you have the following blood test done?
  • Fasting trypsin (to see if you produce enough enzyme for protein breakdown)
If not, please talk to your doctor about them. The above should be covered by insurance. The Genova Diagnostics FMV is also a great one to do, but is rarely covered by insurance.

I don't have insurance - am based in the UK. I see a private doctor but pay for it all myself.

I'm pretty sure the stool samples Ive done will have included that stuff, it was a comprehensive one done with Genova.

I might bring the stuff you mention up with my doctor when I next see him. To be honest though I'd be surprised if he hadn't considered it - he seems pretty clued up regarding gut health, it definitely seems like his field of specialisation and he came highly recommended.

For the SIBO he's given me a checklist to work through, and taking an enzyme supplement is on it so I assume Ive got some issues with breaking down food I need to resolve. So far no notable change from doing so.

Others on the list include HCL acid drops (my stomach acid is very low), natural antimicrobials, antibiotics, and eventually probiotics to replenish the gut. All whilst being on a strict low FODMAP diet so as to starve the SIBO.

As of yet Ive only managed to begin the stomach acid drops at a very low dose - I must be very overladen with SIBO because I get a large die off reaction (Herx) if I go too quickly. (Doc has confirmed this is what it is). For reference I need to get up to 20 drops before each meal; I'm currently on 2.

In the meanwhile I think most of my symptoms are related to methylation, and perhaps some sort of vitamin imbalance as this has been a problem of mine in the past. Perhaps SIBO isnt helping but I can't do any more with that thsn I currently am so have to try experimenting with the methylation.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
I am in the same exact situation as you. Have you figured out the solution yet?

Best wishes

Edit:

I just saw that this was posted a few days ago, lol.


Anyways, I would like to add something to the conversation.

I am actually experimenting with beef organs, and I am experiencing definite overmethylation from it.
I have had experiences with overmethylation from b12 in the past, and it feels identical. Beef organs have tons of folate, b12 and other cofactors in them. Even a small piece of raw liver seems to send me into the deep end...

So crazy how sensitive some of us are

Hi sflorence,

No, no solution yet unfortunately.

Just to clarify my symptoms as I dont want to be suggesting things to you that might not be entirely relevant, the main stuff I'm experiencing are

- significant joint pain, particularly in my back and particularly in the morning.

- this odd sort of 'nerve tingling' sensation throughout my body, especially in my legs. This tends to come and go.

- really bad insomnia; often Im waking up an hour or two after going to sleep, wide awake and with the aforementioned nerve tingling and unable to get back to sleep.

- diarrhoea or very loose stools, often just after eating.

- some mental/mood symptoms, like anxiety or depression (by depression I mean a loss of motivation or a despondency rather than sadness, which I suspect is being caused by inflammation that is being triggered by overmethylation, or whatever is causing the nerve tingling etc)

- the mood symptoms particularly come on shortly after I eat. I've had autoimmune issues in the past and it doesn't feel like a specific reaction to the food, more the food spurring more overmethylation.

For reference the food Im eating is oretty bland and restricted - I'm on a low FODMAP diet to deal with gut health issues, and I also avoid gluten, dairy, anything processed, sugar, grains, and anything high in histamine.

Currently my diet mainly consists of fish/chicken, quinoa, nuts, and low fodmap fruit (berries) and veg, although recently I've been forced to pare back the veg and nuts because they also seem to spur on the methylation too much - I suspect it's the folate content. So at the moment I'm mainly just eating fish, quinoa and berries.

I've been trying a few different things, mostly following the advice on the Ben Lynch website as this is what has helped in the past (specifically I went through a very difficult few months last summer when I was taking a high dose B12 and methylfolate supplement and I was getting heavy brain fog with each meal and many of the same symptoms re aching joints, only to a much greater degree).

I eventually managed to get on top of this by taking Ben Lynch's Optimal Start supplement containing all the other B vitamins plus some other cofactors. He says if you go ahead with B12 without prepping beforehand with this you can get bad mental symptoms when neurotransmitters get "stuck" in your brain, and this was exactly my experience.

I was on these for a while and they helped. I was also taking excess B2 (riboflavin) as initially the Optimal Start seemed to give me extra bloating but B2 seemed to help.

Eventually I came off the B2 as I was concerned I'd been overdoing it (began to get diarrhoea) and soon after stopped Optimal Start as I felt I was overmethylating again (no brain fog but aching joints).

Since then I've basically struggled to get back on track. At times Ive experimented with eating individual foods on certain days to see how I fare. Most things though seem to fire things up so I suspect it's a vitamin/nutrient imbalance as before and that changing the food wont fix things in the long term.

Since my early post I retried Ben Lynch's "B Minus" supplement, which is like his optimal start except without the added cofactors, just the B vitamins. Safe to say this didnt go overly well, just worsened all pre existing symptoms.

I then gave glutathione a go for a couple of days, at a very low dose. This also just seemed to fire everything up even more so, particularly the anxiety after eating. I highly suspect this is all overmethylation because the anxiety seems to hit like clockwork and Niacin does seem to help bring it down. It doesn't do anything for the nerve tingling or insomnia though.

I'm now trying some individual B vitamins from the Optimal Start supplement to see if there's one in particular I'm deficient in. I've started today with Riboflavin because it's helped in the past. Unfortunately it didn't seem to do much; I felt the usual anxiety after eating and have been getting the nerve tingling again, but my bowel movements changed a bit (stools less loose than before and I didn't need to go immediately after food) so I'm hoping the B2 might have had some effect and will give it a few more days to see. The insomnia and joint pain will be the real revealer of any success here.

I'll continue to update my progress here in case this helps anyone in the same situ.

Hugo
 

sflorence

Senior Member
Messages
134
Interesting, you have already tried B3, correct? I have been trying B3 these past two days and I am noticing that it is actually helping me. I have been taking low doses, 50mg, a few times a day, and I feel pretty good afterwards.

It sounds like we don't have exactly the same symptoms. My worse symptoms were increased anxiety, mania, agitation, anger, insomia, ect. Lots of mental symptoms. I had wayyy too much energy as well, it was building up to a huge crash before the B3 started helping me yesterday.
Maybe the B3 supplement had a filler that you were intolerant to? I use the GNC brand, very basic and little filler.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Interesting, you have already tried B3, correct? I have been trying B3 these past two days and I am noticing that it is actually helping me. I have been taking low doses, 50mg, a few times a day, and I feel pretty good afterwards.

It sounds like we don't have exactly the same symptoms. My worse symptoms were increased anxiety, mania, agitation, anger, insomia, ect. Lots of mental symptoms. I had wayyy too much energy as well, it was building up to a huge crash before the B3 started helping me yesterday.
Maybe the B3 supplement had a filler that you were intolerant to? I use the GNC brand, very basic and little filler.

I've tried a few different types of B3, both Niacinamide and Nicotinic acid, neither with much success. I suspect because of this that it's not solely about overmethylation, or excess SAMe, as Niacin would sort that out, but that there's some other cofactor I've too much or too little of.
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
I'm now wondering if some of this might be as a result of not taking B12 or folate in a while, and so being relatively deficient in that compared to the other B vitamins? I'd be worried though about taking B12 in any significant amount in case it just makes this all worse? Fuck this is so difficult.
 

BeADocToGoTo1

Senior Member
Messages
536
I don't have insurance - am based in the UK. I see a private doctor but pay for it all myself.
Those are standard tests that should be covered by the NHS.
I'm pretty sure the stool samples Ive done will have included that stuff, it was a comprehensive one done with Genova.

I might bring the stuff you mention up with my doctor when I next see him. To be honest though I'd be surprised if he hadn't considered it - ....
Please do not assume this is the case. If I had assumed doctors had ordered the correct tests, or covered all the important scenarios I would not be here today. Always get copies to take home of all the test results from all your doctors so that you can reference them. With this complicated illness you have the most time of anyone to dig into the research.

Hope you figure this out soon!!
 

hb8847

Senior Member
Messages
432
Location
United Kingdom
Those are standard tests that should be covered by the NHS.

Please do not assume this is the case. If I had assumed doctors had ordered the correct tests, or covered all the important scenarios I would not be here today. Always get copies to take home of all the test results from all your doctors so that you can reference them. With this complicated illness you have the most time of anyone to dig into the research.

Hope you figure this out soon!!

I will do, thanks.
 
Messages
45
Location
Northern Virginia
I hesitate to post on this subject as I'm biology challenged unlike a lot of folks here but thought I would mention something that has helped me recently. First let me say that folate heavy food causes serious sweating, insomnia, and inflammation in me. I have not taken a methylated form of a B vitamin since 2015. I would like to be able to eat salads again but am about ready to give up on that. Taking niacin and electrolytes helps with overmethylation but not a total solution for me. I still overmethylate and wish Dr. Lynch would quit saying, "Just take a little niacin, and everything will calm down." Sheesh.

While working with Bob Miller, the naturopath, with Tree of Life, he said to me that folate drives MTOR and can cause inflammation and excitotoxicity. Hmmm......

So after eating anything green I try and take some things that inhibit MTOR. Some things I might take - curcumin, valerian, olive leaf, magnolia bark, eldeberry, etc. I'm not saying it's magic but this has definitely helped me, and maybe this info can help someone else. Joe at Selfhacked.com has a great article about MTOR so I'm posting in case it's helpful. https://content.selfdecode.com/mtor-natural-mtor-inhibitors/