Methylation: From feeling FANTASTIC back to Square One

[caledonia]

Just popping in so you can see my signature links.

 

[sregan]

Hello there,
This lead me to trying to figure out why I felt so great - hence my discovery of the methylation cycle.

I read Freddd’s protocol in detail, along with a couple of the others. I started taking Jarrow 5mg sublingual B12 along with the Thorne Activated B Complex. I still felt good, but ever since I increased my B12 dosage (I ended up taking 2x 5mg sublingual daily) I have crashed.

@ryanbarclay, if you can get to that place where you feel amazingly wonderful again, like you haven't felt in years... (whispering) don't make any changes!!! Enjoy, enjoy, enjoy. By all means do some research but if it ain't broke don't touch it.

If things change then start adding/taking away things. Would also recommend only adding 1 thing at a time (or 2-3 synergistic things. i.e. Zinc and P5P for pyroluria) and don't make a change for a week. Otherwise you'll never know what is helping and what is hurting.

I also vote to just go back to taking the Thorne Basic B-Complex.

The dosages in that seem pretty high for a basic B (high B1, B3 and Biotin). I doubt you are getting that much B12 from something you swallow. Your gut needs intrinsic factor to metabolize B12 going that route. I might suspect you could add some sublingual B12 to your b-complex. (nothing like the 5mg that you were taking. Maybe 200-400mcg sublingual. That would be the next thing I add to the B-Complex if you find the b-complex isn't working like it used to. Most likely you have created a deficiency somewhere.

 

[ryanbarclay]

Hey Ryan. First of all buddy if the B-Complex helped get back to it and see if it keeps helping like someone else suggested already. I have taken a couple of active B-complexes and the best one hands down was by Metabolic Maintenance. I took it sublingually for far better absorption, good stuff for mood, energy and verbal ease. Also maybe you DO have real hypochondria, so I am sorry if I just assumed doctors are pushing that to you because as you have experienced yourself they will push that systematically to anyone with a chronic illness that their tests cannot "prove". Either way you also have real physical problems so I would focus in improving those, I am sure not having symptoms would help a lot with any "health obsession" right?

EDIT: Just saw your "liquid ass" comment. Boy, do you have to start reading on "leaky gut" and take action. This is central to autoimmunity and autoimmunity is central to CFS and a lot of chronic "unexplainable" diseases. And yes leaky gut and candida are kind of best friends forever.

Funny you mentioned the verbal ease - that's an issue too! I do have a little hypochondria, but like you said - it's all because I have physical symptoms that haven't been diagnosed - apparently I'm as fit as a fiddle - how wrong that could be.

It's funny - I was always a nervous child. However, when I was about 14 years old - all of the major fatigue issues literally happened within the space of a few days and have never left me. I remember one really bad morning where my face was very swollen (especially around the eyes). I remember my classmates commenting on it. I had no explanation. I was emotionally and physically exhausted. I could never make it to school because I was so fatigued - I ended up going only a few times per week; late every time.

I'll look into the leaky gut - I don't know much about it. I know lots about Candida now!

 

[ryanbarclay]

Omg you are in the UK. Not a good place to be with this illness. Ryan did u try zinc ? That was a missing piece for me. Methylation didn't work for me....I got excitotoxicity. I had to stop..started zinc slowly adding Bs...& experimenting with BH4.

I grabbed some of the Solgar Chelated Zinc this morning. I've taken 44mg so far - I think I'm going to leave it at that for today. No immediate response but I'll continue taking it. Thanks for checking in

 

[ryanbarclay]

@ryanbarclay, if you can get to that place where you feel amazingly wonderful again, like you haven't felt in years... (whispering) don't make any changes!!! Enjoy, enjoy, enjoy. By all means do some research but if it ain't broke don't touch it.

If things change then start adding/taking away things. Would also recommend only adding 1 thing at a time (or 2-3 synergistic things. i.e. Zinc and P5P for pyroluria) and don't make a change for a week. Otherwise you'll never know what is helping and what is hurting.

I also vote to just go back to taking the Thorne Basic B-Complex.

The dosages in that seem pretty high for a basic B (high B1, B3 and Biotin). I doubt you are getting that much B12 from something you swallow. Your gut needs intrinsic factor to metabolize B12 going that route. I might suspect you could add some sublingual B12 to your b-complex. (nothing like the 5mg that you were taking. Maybe 200-400mcg sublingual. That would be the next thing I add to the B-Complex if you find the b-complex isn't working like it used to. Most likely you have created a deficiency somewhere.

Hi @sregan - thanks for your comment, I really appreciate all of the support - everyone is great here.

You're right with the one-step-at-a-time approach. Because I'm always searching for "feeling better", it's hard to keep track on what I've been taking. Perhaps I should start a supplement diary.

When I felt "great" I was taking Thorne Basic B Complex, Thorne Bio-B12 (3-5 capsules daily) (which has FOLIC acid and Zinc). I was taking my Natural Calm magnesium (I take it every night before bed). I was also taking iodine for about a week before (around 50mg/day over two doses). When I felt "great" I stopped the iodine. I'm also on a strict candida diet and taking a few antifungals. However, when I started to feel better I had a few "bad" meals - possible cause?

This "great" feeling I mention - everything felt different - my feet no longer felt cold, I could go outside in just a jumper and not feel cold! Compared to the week before where I would be wearing three layers. I had a calming and cooling feeling over my back and shoulders - it's hard to describe.

Some of my symptoms also point to thyroid... but apparently my TSH is fine - I don't know whether they bothered checking any of the other downstream hormones.

Perhaps @Freddd has some feedback? It'll be greatly appreciated

 

[aquariusgirl]

44mg of zinc..ok.. better have some Vit C to chelate any copper you set free or some pectasol or something for any heavy metals liberated.. this has only been an intermittent problem for me.. but I went up on zinc slowly & I fall into the long term sick camp so my reactions may be a bit different.

the general advice seems to be to keep zinc at no more than 50mg a day to keep from upsetting copper balance. Maybe get some professional advice if you want to go higher or stay at that level for a prolonged period...

 

[Mary]

Hello there,

It’s my first post here as I’m looking for some help and advice with regards to the methylation protocols.

I’m very new to all of this and am not fully familiar with the science behind the methylation cycle so any help, advice and tips would be greatly appreciated.

I’ve been struggling with chronic fatigue along with depression and paranoia (health paranoia) for many years. Even as a child, I was very nervous and skinny. Every morning I wake up and feel like a zombie no matter how much sleep I get and am so depressed with brain fog and memory problems.

I don’t have any issues with my nerves, no tingling, numbness, pain or anything like that.

About two weeks ago, I purchased Thorne Basic B Complex which includes the B complex in their methylated forms.

Within 3-4 days I had some AMAZING results - honestly life changing results - My depression had lifted, my brain fog was clearing, I actually felt happy and motivated and I felt that I had so much more energy and stamina in my muscles too (physical). I was running up and down the stairs, getting things done, had great motivation - it was honestly life changing. Colours seemed much more vivid, I was really appreciating the real world around me. Food tasted good, I was enjoying eating again. My night vision started to improve. I was really happy. Even my memory improved - I could remember the little things again.

This lead me to trying to figure out why I felt so great - hence my discovery of the methylation cycle.

I read Freddd’s protocol in detail, along with a couple of the others. I started taking Jarrow 5mg sublingual B12 along with the Thorne Activated B Complex. I still felt good, but ever since I increased my B12 dosage (I ended up taking 2x 5mg sublingual daily) I have crashed.

I seem to have gone back to square one - back to being depressed, brain fog, extreme morning lethargy and all of the other symptoms.

Is it possible that I have depleted my folate supply? When taking such high doses of B12, could it be the lack of folate causing the block now? Perhaps I should stop taking everything and go back to just taking the Thorne B Complex again?

I remember that one night last week, I had SO MUCH energy - I felt like a million dollars and so happy then the following morning came the crash.

I take:

5mg Methyl B12 twice daily
Thorne Basic B Complex (which includes L-5-Methyltetrahydrofolate at 400mcg per capsule) twice daily

Can anyone shed any light? What’s blocking the cycle?

Your potassium levels may have tanked, read freddd's posts about potassium. This can cause severe lethargy and fatigue. As things start to work better with folate andb12 it can increase the need for potassium rather quickly, causing potassium deficiency.

 

[Sherpa]

@ryanbarclay hey bro....i would personally go easy and slow on the zinc. Especially at first, 44mg is a lot. For me 30mg caused symptoms of metal detox - poor decision making, anxiety, confusion. I went back down to 15mg... My symptoms disappeared and I felt good again. Many practitioners start folks on 15mg.

I agree with @Mary that low potassium could be your problem. But also be careful with potassium. Too much will $%@# you up bad! I personally start low, 260 - 300mg in the form of coconut water once or twice a day... And slowly increase from there provided everything is OK for a few days, no fallout, and the coconut water tastes delicious. The taste becomes muddy if I don't need K. I now take more than 1000mg sipped slowly throughout the day but I worked up slow.

 

[sregan]

You're right with the one-step-at-a-time approach. Because I'm always searching for "feeling better", it's hard to keep track on what I've been taking. Perhaps I should start a supplement diary.

Excellent idea, you might also make use of the Blog feature here (I have one as do a few others). You can document your journey for yourself and others. I have a blog over at the cpnhelp.org forum I still refer to and have some of my history documented of things I forgot about.

This "great" feeling I mention - everything felt different - my feet no longer felt cold, I could go outside in just a jumper and not feel cold! Compared to the week before where I would be wearing three layers. I had a calming and cooling feeling over my back and shoulders - it's hard to describe.

Alright, that right there along with your taking Iodine makes me think you may have activated a sleepy thyroid a little. Not necessarily a bad thing but you must watch your adrenals very closely.

 

[knackers323]

When I first started I also thought I had found the answer but it didn't continue. Are there any professionals out there that know exactly how to treat the cycle correctly?

Are there any tests, genetic or otherwise that help?

There seems to be endless info out there but the same end result keeps coming up

 

[Johnmac]

@ahmo might be right about the folate.

More generally, it's a good sign that you went up like a rocket, then crashed. It means something has the ability to fix you - which you may not have known before.

I've struggled with the same problems since beginning, abandoning & re-starting the Freddd protocol. You just have to tweak things until you get it right. It seems different for everyone.

I've had several horrendous crashes on LCF. These were followed by crashes more like yours: slow declines following great improvements.

My lessons have been that I can't take LCF (most people can) & have to use liquid carnitine; that I need a good amt of potassium daily to keep -K symptoms at bay; and most importantly that I have to ramp up the DQ dosages - especially folate - or I slide back to where I was.

Paradoxical folate deficiency for some means bad crashes; for others like me it just seems to mean a slow slide back to the old state. It's caused by keeping dosages static and too low.

But YMMV.

 

[silverseas2014]

Are there any tests, genetic or otherwise that help?

Hi @knackers323 ---I would try to do the 23andme genetic test, and then run the raw results through GeneticGenie or Livewello or Sterling's app. At least this would give you some basic information about your methylation genes.

Cheers,
Silverseas2014

 

[picante]

@ryanbarclay, are you still around? There is a lot of good advice here, but one possibility hasn't been mentioned: It's hard to know how degraded the methylB12 is in your supplements. Sometimes it's a matter of trying different ones. We actually found out that my husband does better with the B12 that was more "degraded", in other words, he needs more hydroxyB12 than MeB12. (Yes, he has the homozygous COMT and MAO-A mutations, and the symptoms to go with.)

However, when I was about 14 years old - all of the major fatigue issues literally happened within the space of a few days and have never left me. I remember one really bad morning where my face was very swollen (especially around the eyes).

It sounds like you had a toxic exposure. Did you have a vaccination or something?

Half life of Olanzapine is quite long so I'd have to come off it for a good few days for an accurate test. Thing is, when I try to cut down or come off, my health obsession gets really bad I I literally panic and worry so much that I can't even physically move. I think it's going to have to be a gradual process.

This sounds like some major anxiety, which is actually pretty common here on PR. Peruse some of the threads on anxiety, like this one, and you'll see that a fair number of people have been able to overcome it with supplements that heal the nervous system. This is, after all, a neuro-immune illness.

 

[knackers323]

Thanks @silverseas2014 I got symptoms from taking a slightly higher than recommended dose of a b multi that contained folic acid. I also got symptoms and sore glands from a big dose of niacinamide (which someone told me boosts the immune system greatly, is this true?) And after a couple of weeks of lots of green veg I start to get symptoms. Does any of this mean anything to anyone? Do I have a folate problem?

 

[silverseas2014]

@knackers323 ... Without knowing your methylation snps it is difficult to know what direction to take. Knowing your snps allows you to rule out some things for sure, and begin experimenting with others.

I have not taken a B-complex. Several years ago before starting any Methylation Protocols, I bought and took each b vitamin individually to figure out how I responded to each one. And I still do this. There is no B-complex that I am aware of that has the right amounts (for me) of each b vitamin. For example, I have to have very low, but consistent levels of B-6 --and I use tiny crumbs of a regular B-6 tablet (pyridoxine hcl) and alternate it (one day the reg. b-6/the next day the p-5-p) with one (1) drop of a liquid B-6 (P-5-P) (each drop is 848 mcg/brand: Metabolics).

I don't think you are going to feel great boosts in your immune system from a big dose of niacinamide. I think you are going to stir up a lot bio-chemical reactions in your body... Eventually, when balancing it with all the other B-vitamins, niacinamide might be a piece of the immune-enhancing puzzle.

About Green vegetables: If you have this mutation (do 23andme and run the raw results through Livewello):
MTHFS rs6495446 C CC +/+

"MTHFS (homozygous mutation) – MTHFS is the only enzyme known to catalyze a reaction with folinic acid. If you have a deficiency in this enzyme, and you consume folinic acid (found in vegetables), it will build up in your cells (this is from a note Rich wrote to Fred found here).The problem with this is that folinic acid normally acts as a regulator of folate metabolism by inhibiting enzymes in this metabolism. In particular, it inhibits the serine hydroxymethyltransferase (SHMT) enzyme, which normally is the main enzyme that converts tetrahydrofolate to 5,10 methylene tetrahydrofolate, which in turn is the substrate for making methylfolate. So, a deficiency in MTHFS will allow folinic acid to rise inhibiting SHMT, which will lower 5,10 methylene tetrahydrofolate, and thus will also lower production of methylfolate, which is needed by methionine synthase in the methylation cycle.This would suggest that I need very high levels of methyl folate (and magnesium which is a cofactor)" (eric; howirecovered.com)

I hope some of this helps,
Cheers,
Silverseas2014

 

[drew]

How much methyl folate does one require if they have MTHFS rs6495446 C CC +/+?

 

[silverseas2014]

@drew---good question! Ask Eric what he takes (at his blog "howirecovered.com")

Cheers,
Silverseas2014

 

[Valentijn]

How much methyl folate does one require if they have MTHFS rs6495446 C CC +/+?

Probably none. C is the major allele, and 50% of the general population is CC. So you have the normal version, and it's very unlikely that it causes any abnormalities.

 

[AlmostEasy]

It is unbelievable that no one mentioned potassium until the 2nd page, Jesus guys. It is dangerous to not be taking potassium with this protocol, hypokalemia is no joke. If you went low K from the protocol then for some reason went hiking (which you would probably never feel up to in this state, but you never know) or got sick and had a lot of vomiting / diarrhea you could die from your heart stopping.

Since it was mentioned nowhere (in your list of things you're taking) and you haven't replied I'm assuming you may not have taken this part of the protocol seriously, or just forgot to mention it but if you aren't taking it it explains quite clearly why you aren't feeling well, that happens every day for me if I don't take a lot of potassium. The cycle depends on methylfolate, methylcobalamin, (LCF for some), and potassium.

Start taking potassium.

It seems it's been February since OP has been in this thread but still this needs to be made clear. I don't want to scare anyone but it's our responsibility when we have this information to share it.

Hypokalemia and sudden cardiac death:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3016067/

 

[knackers323]

@drew---good question! Ask Eric what he takes (at his blog "howirecovered.com")

Cheers,
Silverseas2014

@silverseas2014 is this the test that yasko and Ben lynch use? I think I head there was another test or company doing something similar. If I was taking any of the supplements would it effect the results? Thanks again