• 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.

Anabol Dibencoplex vs Source Natural Adb12

dbkita

Senior Member
Messages
655
Hi dbkita!

Thanks for your interest, thanks for asking. Much appreciated.

I am heterozygous, sorry. That was the only genetic thing that was tested btw, so I don't know whether there are other issues as well.
(I am considering 23andme but I'm not at ease yet with them using my genetic info for other purposes.)

Other symptoms:
I consider fatigue the biggest issue at the moment, because it's turning me into an invalid.
Other things do not bother me every second of the day. But here they are:
Using the incorrect word without knowing it (e.g. yes instead of no, left instead of right) and persisting in that mistake when being confronted, mixing two fixed expressions into a new one, not being able to find the word I'm wishing to use, bumping into things (and e.g. breaking a nose as a result of it), tripping over nothing, not being able to walk in a straight line, shortnes of breath and rapid, uncomfortable pounding hearbeat when doing something small like combing my hair, muscle weakness (arms and legs feeling like they're made of lead, the staircase is a mountain to me), burning sensation under my skin after physical or mental exertion, jumping heart (missing a hearbeat), the feeling of (short painful) knife stabs in longs that take my breath away, feeling cold to the bone, sudden muscle contractions in legs/arms, or hands/calves (small and sometimes repetitive or big but one time only). And, remarkable but not complaining about: low heart beat (45-50), low blood pressure (< 100 and < 60) when not active.

In short: mostly b12 defciency symptoms I think. :)
My B12 was 119, at the time I did not supplement any B12.
My homocystein was slightly elevated (12.5).

I have been taking hydroxyB12 1 mg injections twice a week since being diagnosed b12-deficient. It did not help much, got worse actually. Started with the methylfolate, mB12 and aB12 pills in December 2012. Started with co-factors in January. Started with mB12 injections 1 mg thrice a week this week.

Sorry but many of those smack of something far different than B12 deficiency imho. Some of that sounds like electrolyte and Krebs cycle problems. But what you describe really smacks of hormonal problems possible secondary to immune system dysregulation.

I realize it is maybe too early to pass judgment on the mb12 and methyfolate protocols but so far no benefit to your fatigue, correct? And I would definitely suggest you continue with it.

But as for your symptoms ... I went through something similar to what you describe (though the low BP eludes me and was not one of my symptoms) in 2009. For me it was an autoimmune disease except in my case I had a ton of pain as well due to the specific nature of the autoimmune disease. That does not have to be your trigger but please be open to the idea that you may be facing something other than just b12 deficiency. I also do not believe a heterozygous MTHFR C677T is your main culprit ... not by a longshot. Have you had your thyroid and adrenal outputs checked? And I don't just mean TSH and cortisol btw ...

On the other hand is your serum sodium and potassium levels in range? What about magnesium and potassium RBC? Those muscle cramps, shortness of breath, and heart irregularities really suggest electrolyte imbalance assuming no underlying actual CV problem. Believe it or not the fatigue may be secondary to more primary problems. Methylation support can be a useful adjunct but if the other issues are not addressed it is unlikely to solve things.

Good luck and God Bless!
 

dbkita

Senior Member
Messages
655
Why does Rich talk about too much B12 overdriving the methylation cycle? I thought that was the same as overmethylation.
It will overdrive things but not in the same perpetual mechanism as the other factors. The methyl B12 simply does not have enough lifetime and must be recycled.

Now if you take a metric ton of it multiple times a day then yes you are hijacking the methylation cycle and that is something Rich warned against.

But I am talking about levels like 2-5 grams of mb12. That is not hijacking. You will get way more overmethylation with ramping the folate cycle (provided ample mb12 pool) or accelerating the BHMT path (another thing Rich warned against).

Personally changing my dose from 2000 mcg mb12 to 5000 mcg mb12 (granted sublingual) has much less effect than even slightly increasing methylfolate, R5p, TMG (even folinic acid ramps methylation for me), etc.

I think Rich's caution is to let the body make what it needs when it needs it and not hijack just support the cycle. Other on these forums advocate taking over complete control which is very hard for a nonlinear coupled system of reaction.

Then again some react violently to mb12 so who knows. But if I see someone on here who seems to be overmethylating, usually the mb12 would be one of the last things to worry about (unless you are in hijack mode).
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
(though mb12 will reduce melatonin and can cause some insomnia regardless of 'startup' effects).
'Insomnia' is not a bad thing first thing in the morning. I put an mb12 at my bedside and take it as soon as I am awake enough to do so in the morning to help me wake up.
 

dbkita

Senior Member
Messages
655
'Insomnia' is not a bad thing first thing in the morning. I put an mb12 at my bedside and take it as soon as I am awake enough to do so in the morning to help me wake up.
Hehe agreed. I was worried more about people who dose multiple times a day and can't sleep at night. For me I take Cytomel anyways first thing when I wake. That really kicks me into gear :)
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Sorry but many of those smack of something far different than B12 deficiency imho. Some of that sounds like electrolyte and Krebs cycle problems. But what you describe really smacks of hormonal problems possible secondary to immune system dysregulation.

I realize it is maybe too early to pass judgment on the mb12 and methyfolate protocols but so far no benefit to your fatigue, correct? And I would definitely suggest you continue with it.

But as for your symptoms ... I went through something similar to what you describe (though the low BP eludes me and was not one of my symptoms) in 2009. For me it was an autoimmune disease except in my case I had a ton of pain as well due to the specific nature of the autoimmune disease. That does not have to be your trigger but please be open to the idea that you may be facing something other than just b12 deficiency. I also do not believe a heterozygous MTHFR C677T is your main culprit ... not by a longshot. Have you had your thyroid and adrenal outputs checked? And I don't just mean TSH and cortisol btw ...

On the other hand is your serum sodium and potassium levels in range? What about magnesium and potassium RBC? Those muscle cramps, shortness of breath, and heart irregularities really suggest electrolyte imbalance assuming no underlying actual CV problem. Believe it or not the fatigue may be secondary to more primary problems. Methylation support can be a useful adjunct but if the other issues are not addressed it is unlikely to solve things.

Good luck and God Bless!
I've had similar issues and have been trying to pinpoint the cause. What are you referring to beyond cortisol and TSH? My T4 and TSH were normal and when I asked my doctor about other thyroid tests she told me I didn't need them. My cortisol was out of normal range so I assumed that was causing adrenal problems since my DHEA was normal. What other things are you talking about beyond cortisol? What sort of relationship is there between thyroid and adrenals? You had actually suggested adrenal and thyroid issues to me earlier in other threads, but I don't know what to do if my doctor won't order any more tests. Also, what do you mean by immune system dysregulation? I've heard you say a few times that the immune system is something a lot of people in these forums ignore so I would like to know more about that and how to correct it.

Thanks.
 

dbkita

Senior Member
Messages
655
T3 (free, total), reverse T3, and if suspected TPO and TG antibodies

pregenolone, testosterone, estradiol ultra sensitive, DHEA-s, progesterone, aldosterone, renin, angiotensin to name a few.

Also inflammatory markers like C3a, C4a, etc. Of course a comprehensive metabolic panel, etc,

When my neuroendocrinologist did many of the above tests he saw well beyond what other useless doctors had been futzing with for years and saw my adrenals were on the brink of total collapse. My reverse T3 was unbelievably high and my C3a (autoimmune marker) was beyond ludicrously high (still took 2 years to find what autoimmune disease in my case it was).

In the end you need to find a doctor who is willing to do the tests and get to the bottom of your health problems. Sorry I can't be more helpful with that.

Don't necessarily focus on a direct relationship between thyroid and adrenals, that is overstated in the public domain. There is an HPT and an HPA axis. But ... the immune system can wreak havoc on all of it ... if you search for some of my other posts (especially conversing with Adreno) you will see a lot of discussion of the immune system, sympathetic nervous system, norepinephrine, adrenals, etc.
 

Xara

Senior Member
Messages
135
Location
The Netherlands
Sorry but many of those smack of something far different than B12 deficiency imho.
Hm, I’ve really no idea what you think the symptoms of B12 deficiency are, so it might be I’m insulting you by saying things you already know:

Being B12 deficient means the insulating material around the nerves, the myelin sheath, may be, or may have been, damaged.
Wikipedia:
“Whatever the cause, it is known that B12 deficiency causes neuropathies, even if folic acid is present in good supply, and therefore anemia is not present.”
http://en.wikipedia.org/wiki/Vitamin_B12

I haven’t read the entire piece, I am too tired right now, I was just looking for a nice quote that would give me some authority when speaking to a wise person like you. :) Hope you don’t mind.

One thing I have learned from doctors and reliable sites is that because the nerves are involved there are many possible symptoms, and to be honest: mine fit in perfectly I think.
See the video mentioned in
http://forums.phoenixrising.me/index.php?threads/b12-documentary.21478/
or peek at the lists of symptoms in that thread (one of the entries is mine).

Sorry if the above is old news to you. Then we just simply disagree when it comes to typical B12 deficiency symptoms. :)

I know that the current medical opinion says that permanent damage may occur, and that if things improve fatigue will probably be the last thing to improve (generally speaking: first in, last out).

My symptoms worsened when getting the standard treatment (of the Netherlands): twice a week a hydroxyB12 1 mg injection.
I learned about my C677T and thought/hoped that it had something to do with it. When googling I found Freddds protocol and learned that, despite neurological symptoms for a very long time, he had gotten better.
Also adreno said somewhere here that nerves (re)grow 1 cm per month.
So I got hope and started the protocol with methylfolate, mB12 , aB12 and some cofactors.

It helped. As for the fatigue: no change ... yet?
Of course, it may be far too early to tell. Or yes, maybe the fatigue will never leave me (permanent damage).

Some of that sounds like electrolyte and Krebs cycle problems. But what you describe really smacks of hormonal problems possible secondary to immune system dysregulation.
I don’t rule out comorbidity. It could well be you’re right. So I will safeguard this reply of yours on my PC (and backup :) ) for future reference in case there will be no further improvements.

I realize it is maybe too early to pass judgment on the mb12 and methyfolate protocols but so far no benefit to your fatigue, correct? And I would definitely suggest you continue with it.
Yes I agree with you, it may be too early to tell. And I'll continue, thanks.

But as for your symptoms ... I went through something similar to what you describe (though the low BP eludes me and was not one of my symptoms) in 2009. For me it was an autoimmune disease except in my case I had a ton of pain as well due to the specific nature of the autoimmune disease.
Would you be so kind to tell me what autoimmune disease was/is bothering you? Or am I too bold and is it too personal?

That does not have to be your trigger but please be open to the idea that you may be facing something other than just b12 deficiency. I also do not believe a heterozygous MTHFR C677T is your main culprit ... not by a longshot.
Hm yes, your words that 'not genes but symptoms should be the focus' are sinking in. :)

Have you had your thyroid and adrenal outputs checked? And I don't just mean TSH and cortisol btw ...
I did not even get a cortisol output, so… no.
But hey, I do understand the way doctors think:
'Clear case: B12 deficient. Standard treatment. Improvement, if any, may be expected within two years. No clear clues for any other health problem.'
Trouble is in this country that there has to be a specific reason to get things tested, doctors can’t just tick off every box on the paper for the lab.

On the other hand is your serum sodium and potassium levels in range? What about magnesium and potassium RBC? Those muscle cramps, shortness of breath, and heart irregularities really suggest electrolyte imbalance assuming no underlying actual CV problem.
Hm, CV? That's short for...?
Magnesium and potassium RBC were not checked - yet. I’ll ask next time, I hope it’ll make sense to my Dr. now that I am taking Ca, Mg and K. Serum sodium and potassium levels were in range but that was before taking supplements

Believe it or not the fatigue may be secondary to more primary problems. Methylation support can be a useful adjunct but if the other issues are not addressed it is unlikely to solve things.

You mean there could be something even worse for me than nerve damage from a long lasting B12 deficiency? Hahaha.
I do hope you don’t mind this bit of fun, dbkita, I definitely understand your point: comorbidity. And it makes sense to me.
I have been doing this methylation support (apart from the B12 supplementation) for two months now, it prolly is too short to tell, I will give it some time.

I know I’ll have to look into electrolytes soon because my heartbeat is getting more and more uncomfortable. I have decided to lower the methylfolate as well.
In the meantime I’ll get myself acquainted with the Krebs cycle, the significance of cortisol and the function of the thyroid and adrenal glands.

Thank you, dbkita, thank you very much for your help and kind words. They won’t get lost.
I wish you all the best.
 

dbkita

Senior Member
Messages
655
Hm, I’ve really no idea what you think the symptoms of B12 deficiency are, so it might be I’m insulting you by saying things you already know:

Being B12 deficient means the insulating material around the nerves, the myelin sheath, may be, or may have been, damaged.
Wikipedia:
“Whatever the cause, it is known that B12 deficiency causes neuropathies, even if folic acid is present in good supply, and therefore anemia is not present.”
http://en.wikipedia.org/wiki/Vitamin_B12

I haven’t read the entire piece, I am too tired right now, I was just looking for a nice quote that would give me some authority when speaking to a wise person like you. :) Hope you don’t mind.

One thing I have learned from doctors and reliable sites is that because the nerves are involved there are many possible symptoms, and to be honest: mine fit in perfectly I think.
See the video mentioned in
http://forums.phoenixrising.me/index.php?threads/b12-documentary.21478/
or peek at the lists of symptoms in that thread (one of the entries is mine).

Sorry if the above is old news to you. Then we just simply disagree when it comes to typical B12 deficiency symptoms. :)

I know that the current medical opinion says that permanent damage may occur, and that if things improve fatigue will probably be the last thing to improve (generally speaking: first in, last out).

My symptoms worsened when getting the standard treatment (of the Netherlands): twice a week a hydroxyB12 1 mg injection.
I learned about my C677T and thought/hoped that it had something to do with it. When googling I found Freddds protocol and learned that, despite neurological symptoms for a very long time, he had gotten better.
Also adreno said somewhere here that nerves (re)grow 1 cm per month.
So I got hope and started the protocol with methylfolate, mB12 , aB12 and some cofactors.

It helped. As for the fatigue: no change ... yet?
Of course, it may be far too early to tell. Or yes, maybe the fatigue will never leave me (permanent damage).


I don’t rule out comorbidity. It could well be you’re right. So I will safeguard this reply of yours on my PC (and backup :) ) for future reference in case there will be no further improvements.


Yes I agree with you, it may be too early to tell. And I'll continue, thanks.


Would you be so kind to tell me what autoimmune disease was/is bothering you? Or am I too bold and is it too personal?


Hm yes, your words that 'not genes but symptoms should be the focus' are sinking in. :)


I did not even get a cortisol output, so… no.
But hey, I do understand the way doctors think:
'Clear case: B12 deficient. Standard treatment. Improvement, if any, may be expected within two years. No clear clues for any other health problem.'
Trouble is in this country that there has to be a specific reason to get things tested, doctors can’t just tick off every box on the paper for the lab.


Hm, CV? That's short for...?
Magnesium and potassium RBC were not checked - yet. I’ll ask next time, I hope it’ll make sense to my Dr. now that I am taking Ca, Mg and K. Serum sodium and potassium levels were in range but that was before taking supplements



You mean there could be something even worse for me than nerve damage from a long lasting B12 deficiency? Hahaha.
I do hope you don’t mind this bit of fun, dbkita, I definitely understand your point: comorbidity. And it makes sense to me.
I have been doing this methylation support (apart from the B12 supplementation) for two months now, it prolly is too short to tell, I will give it some time.

I know I’ll have to look into electrolytes soon because my heartbeat is getting more and more uncomfortable. I have decided to lower the methylfolate as well.
In the meantime I’ll get myself acquainted with the Krebs cycle, the significance of cortisol and the function of the thyroid and adrenal glands.

Thank you, dbkita, thank you very much for your help and kind words. They won’t get lost.
I wish you all the best.

Hi Xara,

Yes I am well aware of the symptoms of B12 deficiency. And contrary to what is often mis-touted on these forums, unless you have hideous genetics, primary B12 deficiency is fairly easy to correct in short order. Though recovery from collateral damage in severe cases can be a life long thing. So I am not sure why you are convinced you have a lasting B12 deficiency that is not correctable.

Freddd was dealt a particularly bad roll of the genetic dice and his success in reversing things is a wonderful testament to the human spirit but using his protocol to its full extent would overload many people.

I am confused since most of your symptoms you described in the other post did not seem to be neuropathy related or due to nerve damage of the myelin sheath. I must have misunderstood something. For example I did not see the tingling, tremors, muscle fasciculations, pain, etc as your main concerns. And for most people the non-neurological symptoms you reported may have nothing to do with B12. There are many more likely suspects. For example word search problems usually have zero to do with b12.

So yes let's choose to disagree. The paradox is B12 deficiency or low B12 is not uncommon in the population at one point or another in a person's life. Yet the list of symptoms you ripped off are anything but common. Their is a logical juxtaposition there that doesn't make sense to me.

That being said there are a whole host of other conditions that having little or nothing to do with b12 and methylation, that can cause the vast majority of what you described. Things like adrenal fatigue, thyroid problems, electrolyte imbalances, inflammation, infection, etc. can cause a lot of what you described. You may also have dysautonomia as well (which for most again has zip to do with B12).

Btw since you are on a strong methylation protocol are you taking a lot of potassium? Potassium is big factor in CV (cardiovascular) issues.
 

Xara

Senior Member
Messages
135
Location
The Netherlands
Hi dbkita and any others that are reading this too,

Sorry for the delay, I crashed a couple of days ago and was unable to respond. At the end of this post I’ll describe what happened, for those interested.
I’ll be trying to be thorough in this post, but if you hate to read long texts, please take the short route.

Short route: skip this
I am confused since most of your symptoms you described in the other post did not seem to be neuropathy related or due to nerve damage of the myelin sheath. I must have misunderstood something. For example I did not see the tingling, tremors, muscle fasciculations, pain, etc as your main concerns. And for most people the non-neurological symptoms you reported may have nothing to do with B12. There are many more likely suspects. For example word search problems usually have zero to do with b12.

Short route: skip this
I am afraid I am the one to blame for that confusion. In an earlier posting of mine, in this thread, when asked ‘What symptoms do you have other than fatigue’, I concentrated on the present, i.e. on symptoms during the last two months, but I have been ill for over twenty years. Twenty years in which things got worse over time, in a slow sneaky way.

When referring to the list of symptoms I mentioned in that B12 documentary thread, well, o dear, it’ll be quicker for me to mention the things I did NOT have. So yes, tingling (hands, arms, feet, legs, neck), tremors, fasciculations, pain (lower back), glossitis, aphtha, psychological problems, concentration and memory problems, dizziness, sleepiness, tightness of the chest, feeling cold, leaden arms and legs, aching muscles, ataxia, weight loss, eye and ear problems, etc: been there, done that, waiting for the T-shirt. The word search problems I have are known within the (Dutch) B12 deficiency community and are being seen as a manifestation of aphasia. BTW not all symptoms affect(ed) me on a daily basis, some things are periodic though recurrent.

Last year, January 2012, I was diagnosed B12 deficient because total serum was lower than what’s considered to be the normal value. I was put on hydroB12 injections twice a week to see what would happen. Nothing happened at first, then things got worse - startup trouble?
I was told B12 needed other vitamin Bs to work properly, so I started to take 2 tablets of co-enzym B-complex on a daily basis. Mind you, that complex has 200 mcg of methylfolate in each tablet, and 25 mcg of adenoB12, but at the time I did not know what those were.
It was only after taking that vitamin B-complex that things started to improve; nasty tingling/pricking sensations in hands and feet and lower back pain went away.

In July I felt tingling sensations again. I thought it was due to an excess of B6, and thus reduced the B-complex significantly: from 2 tablets a day to 2 tablets a week. (Fact: the amount of P5P in that complex is 5 mg a tablet.) The tingling went away.
In August/September 2012 things slowly deteriorated. Fatigue, shortness of breath and weakness got worse.
My serum B6 was found to be within normal range, so I did not change the intake of that B-complex.

In November and December the pain in my back returned, so did the tingling and the feeling of being cold to the bone. Again fatigue, muscle weakness and shortness of breath worsened.
I started with first methylfolate and a week later with mB12, and the tingling went away, so did the brainfog, I felt cheerful, clear-headed, awake - I had forgotten I once was able to think that sharp and clearly.

Short route: read this
So, there you are: B12 deficiency symptoms.
Most of the symptoms I mentioned in a previous post in this thread, the ones that do bother me the last two months, can also be related to affected myelin I guess, and aren’t most of them in that list of mine in the other thread, either mentioned between the brackets or under a covering Latin umbrella? (Not that I expect you to peruse everything I write, I am sure that’s quite fatiguing :) )
Yes, ‘breath taking knife stabs in lungs’: that’s odd and not in the list, but to my pleasant surprise it was mentioned in that B12 documentary. For a longtime I feared that it had some relation with pulminary embolisms for which I have been hospitalized long ago.
The only thing AFAIK that does not fit in are the low heart beat (45-50) and low blood pressure (< 100 and < 60) when not active. But I am not complaining about those two.

Since my crash my mind and body seem to have calmed down a bit. Okay, my heart’s still racing when active, I’m short of breath when active, fatigue’s still very disabling, and I still have several neurological issues, but hey,
my mood has improved.:)

Btw since you are on a strong methylation protocol are you taking a lot of potassium? Potassium is big factor in CV (cardiovascular) issues.

Thanks, I did not know that. I am taking 2000 mg a day now. Though I am not sure my teaspoon is as big as a standard teaspoon. Yesterday I have ordered a pair of scales that’s able to measure grams and milligrams, so I'll get the exact amount one of these days.
I have calculated my daily potassium intake via food (thanks for the tip), it is about 4 g, so I am getting appr. 6 grams of potassium every day.
I may raise my K even further for I am still having muscle spasms (3 or 4 every hour now).

Thanks, dbkita, for thinking along. Your care and input is much appreciated.

Short route skip all this:
Crash details:
Many muscle spasms (15-20 per hour), painful muscles, skipping heartbeats when inactive, rapid pulse when being slightly active (like getting up to my feet or moving my arm when putting a sweater on) sometimes combined with a heart that’s pounding/thumping (heavily), the combination making me feel awful and urging to back off and lay down, wired feeling, rapid thinking and unable to halt it, difficulty sleeping, crying easily, nausea, headache.

I stopped the methylfolate, that way I got only the methylfolate that was in the B-complex (400 mcg methylfolate in total a day).
I doubled the potassium intake (from 1000 mg to 2000 mg). I upped magnesium and calcium a bit with resp. 125 mg and 160 mg (getting in total: 375 Mg and 640 Ca).

The result: less spasms (one every hour), extremely tired and sleepy, being incapable of thinking clearly, muddleheaded, and in the evening an insatiable appetite.

Next day: I re-introduced the methylfolate of Solgar, first 200 mcg and on a day later 400 mcg, so making it 800 mcg in total. (But considering the 400 mcg methylfolate of the vitamin B-complex is taken after green smoothies, and having read that methylfolate reacts with vitamine C and iron, I doubt I get much benefit from the methylfolate in the vitamin B complex).

So a slightly higher dose of Solgar methylofate (from 200 to 400, making 800 with the B-complex), larger dose of K (2000 mg in total), Mg (375 mg in total) and Ca (640 mg in total), and...:
Slightly more spasms.
The nausea and constipation were getting worse. I also got abdominal pain, swelling of the belly, a lack of appetite and small solid stools. That last thing I thought to be remarkable, I looked it up in my notes and saw all those gut problems could well be the side effects of Calcium. And, according to my notes, the signs of a Calcium overdose are: irregular heartbeat, pounding heartbeat. So maybe it was not just the methylfolate that had been bothering me...
(I started with a Calcium supplement just a week ago, because two weeks ago I had muscle cramps and they vanished when taking yoghurt and cheese.)

Thank you for reading, thanks for your attention.
 

dbkita

Senior Member
Messages
655
Xara:

Sorry I am still a bit confused here. You say you went off methylfolate and had less spasms and more fatigue but then you later state methyfolate lower dose, etc. and ... slightly more spasms? I also think you have to sit at a dose for awhile before you can decide what is going on. You were one dose for a couple of months but then you have cycled through three other doses in a matter of days. Hard to decipher that. Also hard when you change other variables at the same time. Sorry.
 

Xara

Senior Member
Messages
135
Location
The Netherlands
Xara:Sorry I am still a bit confused here. You say you went off methylfolate and had less spasms and more fatigue but then you later state methyfolate lower dose, etc. and ... slightly more spasms?.

O ****, my mistake. I should not have said 'So methylfolate lower dose', I meant higher dose. Now that's a fine example of my brains verbal misfunctioning: saying the opposite of what I mean, it happens often. It makes communication with others difficult and frustrating, for others - you in this case - and me. :(
I corrected the sentence and hope it is more clear now.

After the crash I went off the methylfolate. Because I got so foggy in my head and the spasms were lessening I decided to reintroduce the Solgar folate which resulted in a clearer head but some more spasms.
The spasms are tolerable for now, and I hope more K will solve them.

Xara:
I also think you have to sit at a dose for awhile before you can decide what is going on. You were one dose for a couple of months but then you have cycled through three other doses in a matter of days. Hard to decipher that. Also hard when you change other variables at the same time. Sorry.

You are right of course, in the ideal situation. But I am doing this on my own, no doctor or other expert where I can turn to (methylation is not known in these parts), and I can not make decisions or an analysis when muddleheaded. So that's why I upped the methylfolate again.

About the other variables: after the crash with those many spasms I thought it was a good idea to up some electrolytes, turned out the calcium gave me gutproblems, sitting it out did not cross my mind.

Sorry to have caused confusion. I understand this makes it difficult for others to help, one can not build on a swamp; the things you are working on, data provided, have to be solid.
Right now I am pissed off with myself, I also made a stupid mistake in a different thread; if I am not able to give the correct information I am of no use.
Thanks for all your good advise..
Wishing you all the best with your own search and health issues,
Xara.
 

dbkita

Senior Member
Messages
655
Spasms and muscle pain were a big problem for me when I had to many methyl donors. Took me a long time to realize that. That was despite having to take way to much potassium (total intake 10-12 grams per day ... uggh).

Just try to slowly find your balance. And again be open to needing to address other non-methylation issues as well.
 

Xara

Senior Member
Messages
135
Location
The Netherlands
Spasms and muscle pain were a big problem for me when I had to many methyl donors. Took me a long time to realize that. That was despite having to take way to much potassium (total intake 10-12 grams per day ... uggh).

Just try to slowly find your balance. And again be open to needing to address other non-methylation issues as well.

Too many methyl donors, I would not have linked that with spasms and muscle pain. Thanks for mentioning it, dbkita. The only way to do this for me is by learning from others, following the links and suggestions they're giving, studying endless texts on websites and trying to control myself, i.e. forcing myself to be patient - indeed, going slowly is the only way to notice small physical/mental differences and relate them to a decrease or increase of a specific supplement. But it's so darn complicated, increasing one, by taking a tablet, could easily decrease something else in my body, even something that I may have never heard of! For the last couple of weeks I have been trying to swallow tiny bits of info on
http://www.acu-cell.com/index.html
which is a link from someone here posted in a thread somewhere. The relations and the difficulty in figuering out what's deficient and what's needed, is depressing.

I am planning not to make any changes soon, not for a week at least, provided I don't get into serious problems of course, to see how my body takes the present schedule. To be honest I'd like a moment's rest, I'd like not having to think about what to do next.
I'll continue the (methylation) protocol for now, I'll give it time, and if/when there's no more progression, when there's no positive change anymore, I'll see what other issues might be needing my attention, like the glands, the Krebs cycle and cortisol. Believe me, although my hands can't wait to bring all of the possible culprits to their knees, I do understand it's not wise to do everything at the same time, it would drive me crazy. :)
Dbkita, thank you.
 

dbkita

Senior Member
Messages
655
Too many methyl donors, I would not have linked that with spasms and muscle pain. Thanks for mentioning it, dbkita. The only way to do this for me is by learning from others, following the links and suggestions they're giving, studying endless texts on websites and trying to control myself, i.e. forcing myself to be patient - indeed, going slowly is the only way to notice small physical/mental differences and relate them to a decrease or increase of a specific supplement. But it's so darn complicated, increasing one, by taking a tablet, could easily decrease something else in my body, even something that I may have never heard of! For the last couple of weeks I have been trying to swallow tiny bits of info on
http://www.acu-cell.com/index.html
which is a link from someone here posted in a thread somewhere. The relations and the difficulty in figuering out what's deficient and what's needed, is depressing.

I am planning not to make any changes soon, not for a week at least, provided I don't get into serious problems of course, to see how my body takes the present schedule. To be honest I'd like a moment's rest, I'd like not having to think about what to do next.
I'll continue the (methylation) protocol for now, I'll give it time, and if/when there's no more progression, when there's no positive change anymore, I'll see what other issues might be needing my attention, like the glands, the Krebs cycle and cortisol. Believe me, although my hands can't wait to bring all of the possible culprits to their knees, I do understand it's not wise to do everything at the same time, it would drive me crazy. :)
Dbkita, thank you.

You are most welcome. I am positive methylation treatment is going to be a good thing for you. But make sure to slowly titrate and take the potassium as needed. I think the cramps are due to the potassium shift induced by too much methylation by a mechanism that quite honestly I don't think is well understood. At the same time too much methylation can over-convert histidine into glutamate stimulating the CNS, can lead to too many sulfites, ammonia, and sulfates (which stimulate fight or flight) if you have CBS pathway defects, or to too much neurotransmitter production especially catecholamines.

Here I agree with Freddd that since you are starting out, then proper titration and understanding potential startup effects are key.

I only disagree when people do not recognize overmethylation as a possibility for some of us and instead invoke sensitivities and start-up effects even if the person has been on methylation treatment for years.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
You are most welcome. I am positive methylation treatment is going to be a good thing for you. But make sure to slowly titrate and take the potassium as needed. I think the cramps are due to the potassium shift induced by too much methylation by a mechanism that quite honestly I don't think is well understood. At the same time too much methylation can over-convert histidine into glutamate stimulating the CNS, can lead to too many sulfites, ammonia, and sulfates (which stimulate fight or flight) if you have CBS pathway defects, or to too much neurotransmitter production especially catecholamines.

Here I agree with Freddd that since you are starting out, then proper titration and understanding potential startup effects are key.

I only disagree when people do not recognize overmethylation as a possibility for some of us and instead invoke sensitivities and start-up effects even if the person has been on methylation treatment for years.
If methylation is working properly for a person, would that decrease the things you mention?
 

dbkita

Senior Member
Messages
655
If methylation is working properly for a person, would that decrease the things you mention?
Sorry not sure I understand the question. Which things? And what do you mean by properly? Too much? Too little? Unbalanced? Not the right cofactors?
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Sorry not sure I understand the question. Which things? And what do you mean by properly? Too much? Too little? Unbalanced? Not the right cofactors?
By "working properly" I guess I meant when people have been following a methylation protocol long enough to get to the point where their symptoms improve enough to have lifted the block in the methylation cycle or partially lifted. I'm sorry if I don't understand the terminology like you do and "healing" is a bit too vague for me.
 

dbkita

Senior Member
Messages
655
By "working properly" I guess I meant when people have been following a methylation protocol long enough to get to the point where their symptoms improve enough to have lifted the block in the methylation cycle or partially lifted. I'm sorry if I don't understand the terminology like you do and "healing" is a bit too vague for me.
I can't say for sure how anyone knows for sure if all blocks are lifted in the methylation cycle. But what I go by is given enough time have some of my symptoms improved. Methylation can be very helpful for some symptoms. But for example if you have HPA axis problems or low thyroid and those are your primary problems and you throw methylation at it, it might make you feel better but you are using the wrong tool to tackle your problem. The same thing if you have a bad infection or autoimmune disease. Or heavy metals or other toxins. Methylation touches on so many things. But some of its effects may not be well tolerated (too many switches thrown on at once).

I strongly disagree with the assertion that methylation supplements will not affect a healthy person. BS. Maybe small amounts like in Rich Vanks protocol but even then I am not sure.

I also think ascribing all negative effects of methylation to startup effects is not correct since their is an implication that the person simply isn't strong-willed enough to ride it out. Again BS. I rode such "startup effects" for 2+ years. Only by accident did I realize I was on the wrong side of the equation. Gah!

Finally though I think detox gets invoked way too often on these forums. Many doing the invoking I would wager do not really know what toxins or metals or other factors they have. Many of the test some alternative doctors use to assess such things border on quackery. Sorry. Yes some people have such issues but I read so many posts on here and what comes to mind is immune system dysregulation, low thyroid, adrenal fatigue, etc. Will methylation have some positive effects if done right? Sure. But for some people they are missing the critical support factor they need and all we here are "startup effectgs, detox, sensitivities to mb12, etc.".

Methylation is a very complicated animal but has great potential. But for many people it cannot be the only tool in their arsenal. If I didn't take glucocorticoids I would be dead. Period. If I did not stop eating gluten by Celiac's, gluten would still be carving my guts up and exacerbating my immune system. With no T3-only treatment I would be buried under high rev T3 induced hypothyroidism. In my case these are facts. No amount of methylfolate / mb12, etc. would fix those issues.

I just try to advocate that people look outside the box at bit at what might be their source of trouble.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
dbkita
I agree that sometimes people get tunnel-vision when spending all their efforts on methylation. A lot of your posts do seem to suggest there might be more to the picture although it maybe be enough for some people
. Part of the reason Dr. Nathan has success with methylation for some of his patients is because he doesn't even put them on methylation supplements unless the standard treatment methods weren't enough so it was actually a combination of a lot of things. And even then, it doesn't work for everybody. I am curious if he uses methylcobalamin in addition to hydroxocobalamin because it's quite possible that he does, but didn't want to put it in the article in case someone wanted to try it.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I strongly disagree with the assertion that methylation supplements will not affect a healthy person. BS. Maybe small amounts like in Rich Vanks protocol but even then I am not sure.
Have you read Rich's protocol? The starting dose (2000 mcg hydroxocobalamin/200 mcg folinic acid/200 mcg methlfolate) might be low for some people, but 2000 mcg METHYLcobalamin + 800 mcg methylfolate seems like a significant amount.
http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/
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.