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How much B12 did you start with?

Messages
54
My body feels desperate for B12 right now, and I know that once I take some I'll feel a lot more 'normal', a lot less fatigued and the brain fog will clear.

However, it makes my already severe insomnia a million times worse.

So I was wondering what dose people have started with?

The tablets I have are 1000mcg but they're so small that I don't think I could cut them any smaller. I'm thinking about trying a spray as I can't seem to find anything apart from cyanocobalamin that comes in a smaller measure.

For those who find it difficult to sleep and who feel even more wired with B12, did this effect eventually go away once your body got used to it or was there anything that helped you to tolerate it?
 

drmullin30

Senior Member
Messages
217
I started with 5mg sublingual per day and yes there were huge start up effects etc. I used hydroxycobalamin when these were overwhelming. These symptoms have slowly faded within over the last two years as detox and methylation startup effects died back.

I'm now up to 20-25 mg per day of transdermal mb12 and 5-10 mg of transdermal adenosylcobalamin per day.
 
Messages
54
I'm now up to 20-25 mg per day of transdermal mb12 and 5-10 mg of transdermal adenosylcobalamin per day.

Wow, that’s brilliant that you’re able to tolerate so much now. Did you also feel extra ‘wired but tired’ as a side-effect initially?

Do you think it was just time which helped you to get used to it, or were there any other things which might have played a role?
 

drmullin30

Senior Member
Messages
217
The wired/tired feeling is par for the course with this disease and I have found resolves as you heal and detox.

I did a lot of detoxing all along. Coffee enemas, saunas, lots of zinc and molybdenum and I did several weekends of Cutler chelation.

I think the big mistake people make is not learning their SNPS so they can resolve treatment conflicts and tailor the protocol accordingly or they start methylation without dealing with heavy metal toxicities and liver toxicity.

I had to work up to this level over the course of about five years starting with basic Yasko or RichV methylation protocols, fixing my thyroid with high dose iodine and doing various detox protocols.

Diet adjustments were also huge factor and another major factor for my success was going low oxalate. This falls under the point above as I have SNPs in the oxalate pathway and my electrolytes were completely out of whack until I addressed this. I also learned I am celiac so going gluten free was a major factor in being able to heal.

My diet is ridiculous but it's a major factor in my success. I eat a grain free, dairy free, sugar free (no honey, or maple syrup either), alcohol free, sulphite free, low oxalate, as organic as possible ketogenic paleo diet.
 

ChookityPop

Senior Member
Messages
583
The wired/tired feeling is par for the course with this disease and I have found resolves as you heal and detox.

My diet is ridiculous but it's a major factor in my success. I eat a grain free, dairy free, sugar free (no honey, or maple syrup either), alcohol free, sulphite free, low oxalate, as organic as possible ketogenic paleo diet.
Awesome!

How did you learn you SNPs? Did you do a whole genome sequencing?
 

ChookityPop

Senior Member
Messages
583
Hi @ChookityPop I did 23andMe and I use several internet engines to provide reports based on the text file from 23andMe. Nutrahacker is pretty good place to start, Livewello.com is indispensable and comes with a great community.
Nice! Can I ask what your diet is like? Did you get some interesting diet findings through 23andMe?
 
Messages
54
The wired/tired feeling is par for the course with this disease and I have found resolves as you heal and detox.

It really is a bizarre illness in that respect. I remember sleeping all of the time in the first couple of years, but there's since been a complete reversal and for the past few it's been a major struggle to go to sleep and to stay asleep. The fact that you've seen a big improvement has given me fresh hope that I will find a solution though, and I really appreciate it because it can often feel as though it's never going to get better, especially when most things end up making it worse.

Thank you also for all of the details that you've provided about what has worked for you. You've provided a lot of food for thought and I think I definitely need to go down a similar route.

Mainly because everytime I try something which is even mildly detoxing I get a rash on my neck. It seems like a herx reaction and as though there's something hidden ( perhaps an infection?) going on, but I never seem to come out the other side of it.

The B12 also makes a HUGE difference to how I feel, so I think I probably need to look into genetic testing and the protocols that you mentioned so that I can find a way to introduce it without exacebating the insomnia.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
B12 is one the supplements where quality matters. There's quite a discussion in one of Freddd's threads about B12 and effectiveness. Freddd, and some other posters, were super-sensitive to B12 so they were able to tell which brands were most effective and which weren't effective at all.

I get different effects from some brands, all at the same dose (1mg). Enzymatic Therapy MethylB12 works well for me; Country Life MethylB12 gives me energy but also aggressive thoughts; Solgar MethylB12 helps with mental balance and some energy without aggressive thoughts. It may be that I'm reacting to additives (the Country Life are quite large compared to the Solgar which are very small), or to differences in the B12 produced by each manufacturer.

@JoeyJo have you tried other brands to see if they also increase your insomnia?
 

drmullin30

Senior Member
Messages
217
Hi @PatJ I use transdermal b12 oils from https://b12oils.com/index.htm and they are the most effective I've tried and transdermal is the most consistent delivery method I've tried. I've never done injections. I also make my own transdermal solution from the AOR 15 mg sublingual tablets and that works much better than sublingual/oral saturation.
 
Messages
54
@JoeyJo have you tried other brands to see if they also increase your insomnia?

I've tried a few and I've also tried all of the different forms of B12, and you're right, they all have widely varying effects.

I've found that methylcobalamin gives the greatest results during the day but it also disrupts my sleep the most. Meanwhile, hydroxocobalamin has less of an impact during the day and at night, but the plus and minus are still significant.

Thank you for reminding me about that list. I might look into it again and see if there are some that I haven't tried and if the ones which performed the best could perhaps be divided into smaller doses.

Today I've taken 500mcg of hydroxocobalamin and already feel a million times better for it, but I will probably pay for it tonight. I've also ordered a spray form of methylcobalamin as one squirt is 300mcg and that was one of the smallest doses I could find.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
However, it makes my already severe insomnia a million times worse.
Have you looked back into either co-factors that work with the B12 or other factors that lead to insomnia, particularly amino acid deficiencies or hormone imbalances?
So I was wondering what dose people have started with?
I started with a balanced product, which has cofactors, Thorne MethylGuard Plus, then added Thorne Neurochondria, then added MB12 injections.
I'm now up to 20-25 mg per day of transdermal mb12 and 5-10 mg of transdermal adenosylcobalamin per day.
What is your body doing with all of that? I take about 10 mg a day of MB12 on average, and that's a very high dose. Is all of that transdermal oil actually effective at getting into you? Or do you have some genetic condition that prevents you from using it?
My diet is ridiculous but it's a major factor in my success. I eat a grain free, dairy free, sugar free (no honey, or maple syrup either), alcohol free, sulphite free, low oxalate, as organic as possible ketogenic paleo diet.
Not to derail this thread, but as I have some of the very same issues, I'm curious as to what foods you actually eat. Thanks if you can give a brief list...
I think the big mistake people make is not learning their SNPS so they can resolve treatment conflicts and tailor the protocol accordingly or they start methylation without dealing with heavy metal toxicities and liver toxicity.

I had to work up to this level over the course of about five years starting with basic Yasko or RichV methylation protocols, fixing my thyroid with high dose iodine and doing various detox protocols.
I have the same SNPs as I did 10 years ago, And while it was useful to learn what my genes are doing, my needs today are very different than my needs were 10 years ago. There is no substitute for comprehensive nutrient testing, as well as heavy metal testing to be able to figure out what you're working with, and to develop a comprehensive nutrient protocol with all of the necessary cofactors for success. Genova diagnostics has a few tests, like the NutrEval, which are comprehensive nutrient tests, and Doctor's Data has excellent heavy metal and essential mineral testing.

Its also helpful to learn what the phase one and phase two detox pathways look like, and what cofactors they need, as well as to understand that you need B1 and molybdenum in the transsulfuration pathway to get rid of whatever you mobilize, along with plenty of fiber and water.
B12 is one the supplements where quality matters. There's quite a discussion in one of Freddd's threads about B12 and effectiveness. Freddd, and some other posters, were super-sensitive to B12 so they were able to tell which brands were most effective and which weren't effective at all.

I get different effects from some brands, all at the same dose (1mg). Enzymatic Therapy MethylB12 works well for me; Country Life MethylB12 gives me energy but also aggressive thoughts; Solgar MethylB12 helps with mental balance and some energy without aggressive thoughts. It may be that I'm reacting to additives (the Country Life are quite large compared to the Solgar which are very small), or to differences in the B12 produced by each manufacturer
That's a good point. I use Thorne, Seeking Health, Designs for Health, and other high quality brands, and stay away from the drugstore brands, finding that I don't have to deal with cheap fillers, hidden toxins. and inadequate ingredients.

Many people who think that they have issues taking B12 have one of two things going on. First, they are missing the cofactors that make it work, particularly B2, B6, magnesium, zinc, glycine, cysteine, glutamine, b1, and/or molybdenum. And/or they have a heavy metal toxicity problem (or could be other toxins as well) And they start to mobilize the toxin as their body starts to make glutathione. If there are not the conditions to allow the mobilized toxins to exit the body, they can get redeposited elsewhere in the body, and this process can make people feel really ill and have all kinds of unpleasant symptoms, including insomnia.
 
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54
Have you looked back into either co-factors that work with the B12 or other factors that lead to insomnia, particularly amino acid deficiencies or hormone imbalances

I had a DUTCH test at the start of the year and that was pretty insightful. It showed that I had a high level of estrogen relative to progesterone. I've since been taking traditional chinese medicine and I feel as though my hormones have almost balanced out as my skin is much clearer and my mood is much more stable. Yet, my sleep has gotten worse if anything so I don't think it's my hormones driving it. It also showed that I have a high level of MMA which explains why I feel better for the B12.

I haven't looked into amino acids yet. Mainly because I've spent so much on tests already ( hormones, gut, nutrients, even an MRI) and a small fortune on supplements with little to show for it. So I'm feeling a bit weary from it all at the moment and reluctant to go down another path, especially one where the supplements will most likely make my sleep worse if they're anything like the others.

I just wish there was a professional who could advise me about methylation, genes, amino acids, toxins etc. in one go and guide me through it because it's so hard to make sense of and to decide what to do next when you're sleep deprived and the brain fog is raging.
 

drmullin30

Senior Member
Messages
217
Hi @Learner1 The dosage number also includes a 15 mg tablet of AOR mb12 that I make into a homemade transdermal solution. I know it's not as affective as the oils so that makes the dose seem higher than it likely actually is. It seems to be about as potent as three squirts of the oil so that 15 mg is more like 5-7 but some days I do it twice.

I have multiple homozygous MTR, MTRR, MTHFR, MTHFD and MTHFS SNPs. The multiple MTR SNPs are an upregulation so I waste a lot of b12 with the conversion from HCY to methionine but in order to get a central nervous system penetrating dose and get neurological healing going I need that much and I need to take it many times throughout the day. No matter how big a dose of b12 I take, I feel the need for more usually within about 4-5 hours. Again, this is due to the MTR upregulation.

Since starting low dose lithium and getting my oxalates under control I am seeing a reduction in my b12 needs. I also have SNPS in the intrinsic factor, methylmalonic acid, transcobalamin and cobalamin transport pathways which exasperates my functional b12 deficiency.

I agree that nutrient and supplements need to change as you heal and progress and the SNPs certainly don't tell the whole story but the SNPS are absolutely critical to get the initial healing happening for some people due to treatment conflicts and inadequate dosages.

Oxalates is a perfect example in my case. If I had paid attention to that set of SNPs in the beginning, I would have realized years ago that I needed to go low oxalate and I would have healed even faster. I also would never have been able to do the Fredd protocol and heal my neurology without understanding my issues around glutamate and CBS upregulation.

I don't do any testing anymore. I never learned anything useful and I can't afford to waste money on them. Blood levels tell you nothing because they are either extremely transient minute to minute or tightly controlled by the body through homeostasis. Even my doctor admitted that urine oxalate testing isn't reliable because this status changes hour to hour. Again, it was the symptoms coupled with the SNPs that revealed the most information. Kidney stones are also pretty hard to ignore and are definitive diagnostically to say the least.

I did HTMA years ago, but that was too slow to be useful on methylation protocols because the healing and detox create rapid physiological changes over the course of days or weeks. HTMA is useful for long term trends and revealed my initial heavy metal problem but wasn't useful on methylation protocols.

I did test my sulfates early on to monitor my CBS upregulation but that problem is gone with the Fredd protocol. Once I started healing enough to create a potassium deficiency, mineral testing also became useless and I had to go by symptoms because they change by the hour.

I've had my TSH tested during bouts of hyperthyroid symptoms and when I was hypothyroid. They revealed nothing as it was always within range but the iodine thyroid protocols I did were vital to helping me heal. Not supported whatsoever by testing or doctors.

It's certainly not everyone's experience but doctor's and testing never helped me in any way shape or form when it came to this disease. I'm in Canada and our public health care system doesn't fully acknowledge CFS/ME as real disease.

As far as detoxing goes, it's just as important as any other factor for healing and you are right you need to pay attention to those pathways but testing for me was useless. Unless you live like a native in the jungle, far removed from pollution and food and water additives etc. and you don't have any SNPs affecting your detox pathways my assumption is you're toxic and need to detox I don't need a test to tell me this. I have looked closely at all of the SNPs in my Phase I and Phase II detox pathways and I supplement for that and I do coffee enemas regularly. My liver has never been healthier. Functioning methylation is the most important factor for liver detox in my experience. Before I started this protocol, my liver enzymes were elevated (duh).

My diet consists of any non-processed fresh or frozen meat except farmed fish, low oxalate fruit and vegetables and that's it. I use organic extra virgin olive and coconut oil for cooking. I don't eat anything processed, and I try to stay ketogenic as my brain seems to work much better burning fat. I cook all of my own food. This is all mainly because of my hyper sensitivity to gluten and synthetic folic acid. Also, the food "industry" is a major racket driven by profit and they don't have your health interests at heart so processed food is neither clean nor healthy.

My supplement regimen is ridiculous and I won't list them all here but trust me, I've got my cofactors covered in spades. One that often gets missed in addition to the ones you list is iodine. B12 doesn't work properly without it.

Cysteine and glutamine can be very problematic for someone with CBS and GAD SNPs and glycine can upregulate endogenous oxalate production and also reverse convert to glutamate with certain SNPs so you have to be careful and tailor your program accordingly.
 
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Messages
62
Wow, so glad I clicked on this thread!
(I promise I'll get to insomnia)
I too have many snps in the "M" family and others.
Last year I dramatically (unknowingly) increased my oxalate intake - "super foods" and a daily chai tea. I believe the oxalates shredded my tissues causing my third hard crash (had CFS coming out my nose it was so severe). I greatly reduced my oxalates in Jan and had immediate improvement. In March I asked a doc to run a methylmalonic acid test and it came back at almost 17,000!! (range is 1.6-29). I am still recovering from the damage it caused.

They gave me a month or two of daily injections of hydroxycobalamin, from 1-3 mg and it helped. But it was like emptying the pool with a thimble. Then I switched to oral A-CoB12 and oral MethylB12, then the oils, now I'm on methylB12 injections at 5-10mg/day. I had already been taking most of the co-factors for years.

Since puberty/teens I developed migraine (I'm mid 50's now). I noticed that B vitamins would give me headache/migraine. So, I stopped taking them. It took me over a decade to discover my migraine triggers; MSG and gluta--anything, which includes brewer's and nutritional yeast, nitrates, nitrites and pretty much any herb, amino or whatever that will cause vasodilation. I learned that some B vitamins are derived from yeast, so eventually I found "yeast free" b vitamins. However, up until recently, I couldn't take any stimulating supplements (B's, C, herbs, even MSM which tends to recycle others) after 7 a.m. or they would greatly increase my insomnia and I'm already on sleep meds. Needless to say, 99% of the time, I didn't get up early enough to take them, especially the B-complex which I had to take with food.

So, with this third hard death defying crash, and running my genetics, I knew that B's were very important so I have been on that journey. I've purchased them separately rather than in a complex. I also discovered that I was most likely severely under supplementing methylfolate. I have researched the relationship between folate and B12 and some experts say B12 first then folate and others say folate first then B12. Nonetheless, due to my genetics I need a lot of methylfolate and a lot of B12. And most people get way too much folic acid in their diet and need the methylfolate to overcompensate for the folic acid so that the folic acid will not block the B12.

All this to say, that once I started taking the right type of B's my sleep has IMPROVED! Yippee!!! Not only has my sleep improved, but I can take my supplements as late as 9 a.m. and they don't effect my sleep. And I'm reducing my sleep meds! YeeHaw!

B12 does not affect my sleep at all. I have even injected as late as 7 p.m. It is the folate that is stimulating for me.

So hopefully, maybe getting in methylfolate, and other co-factors may help your body use the B12 and not give you more insomnia.
 
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62
@JoeyJo I don't want to hijack your thread, so please tell me if you want me to delete this and start an offshoot, but since you are wanting to add B12 it may be of relevance to you as well as the B's all effect one another. Oh, also, Swanson's sells a decent liquid methylB12 that you could dose down easily. https://www.swansonvitamins.com/blu...n-b12-raspberry-1000-mcg-2-fl-oz-59-ml-liquid

Since adding B12, along with the other B's, I noticed good improvement in neuropathy, vascular issues, sleep and part of my vision. However, I have continued to have some neuropathy and heavy leg feeling, weak muscles, and some other symptoms. From reading this forum and another blog https://health-boundaries.com/what-is-a-healthy-b12-level/potassium-vitamin-b12-connection/ , I discovered that once you start replenishing B12 and your body starts making new red bloods that this process uses up a lot of potassium. I do have all the symptoms of low potassium (and more.) So, just a few days ago, I started adding in potassium. I happen to have bulk potassium citrate and bi-carbonate on hand. I mixed them 50/50 and started with a couple hundred mg a few times a day. By day two my stomach was killing me (I do have a snp for citrate - hmmm). So I am now just taking potassium bicarbonate and have taken 4-5 grams for several days and have had some improvement. Am I wrong that potassium corrects immediately? How long and at what dosages are most people taking potassium when taking high B12?

(Need I say how frustrated I am that all these vitamin B experts mention nothing about the potassium depletion?)

Now, I am wondering about phosphorous depletion and how to play this out?

And what else can get out of balance?
@Mary stated in another thread,
"I also keep trying new things, because the BCAAs have not solved the basic issue of ME/CFS, though they have helped me a great deal.

In 2010 I discovered methylfolate - it made a significant difference in my functioning, so I keep taking it. I also found that it caused my potassium to tank and so started taking potassium, and that has helped a lot too - i used to get symptoms of low potassium (severe fatigue among other things) without knowing what it was until the methylfolate. So this has helped me a lot too.

B-1, thiamine -has helped my energy levels for 4 years or so now. And it caused my phosphorous to tank. So I now periodically take a phosphate supplement as well, which allows me to take the thiamine."


So, Mary the Mfolate was also depleting your potassium? That would mean a double depletion ;-) for those who are megadosing mfolate and B12. ?

The only thing I'm not taking at the moment is a form of niacin. I just purchased Birkmayer's NADH, and am disappointed that the website lists the ingredients as one thing and the bottle states differently.
 

Mary

Moderator Resource
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17,334
Location
Southern California
So I am now just taking potassium bicarbonate and have taken 4-5 grams for several days and have had some improvement. Am I wrong that potassium corrects immediately? How long and at what dosages are most people taking potassium when taking high B12?
@Momentum - low potassium has been a huge issue for many here. Freddd did write about it, and thanks to him, I was aware of this issue when I started taking methylfolate. Yes, B12 and methylfolate can both deplete potassium. Here's a post you might find interesting, which explains why people with ME/CFS should be on the lookout for low potassium when starting methylation. It also explains how people with ME/CFS can have low intracellular potassium, despite normal blood work: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-291422

I found that 1000 mg of potassium gluconate a day, in divided doses, was sufficient for me. I've been taking it for 10 years. I also take it in the middle of the night! That's when I often would have symptoms of spasms and cramps in my legs and feet.

Potassium did work pretty quickly for me, within a few hours.

You should be aware that potassium bicarbonate can neutralize stomach acid, and thus can interfere with digestion. The bicarbonate is what does this, like baking soda will neutralize stomach acid. So you might do better with something like potassium gluconate. I initally tried potassium citrate and it contributed to a bladder infection so had to stop it, but have had no problems with potassium gluconate.

Need I say how frustrated I am that all these vitamin B experts mention nothing about the potassium depletion?
Yeah, this is a really important issue. If I had not been aware of this issue, I would have had to stop the methylfolate because it caused severe fatigue due to my potassium taking.

Now, I am wondering about phosphorous depletion and how to play this out?
Thiamine (B-1) was the nutrient which caused my phosphorous to tank. I discovered this through trial and error and experimentation. B-1 boosted my energy for a day, followed by severe fatigue the next, much like how the low potassium from methylfolate hit me. However, this fatigue felt a little different AND potassium did nothing for it, had no effect on it. So I just theorized that perhaps my phosphorous had tanked, as hypophosphatemia was mentioned in articles about refeeding syndrome. I looked up foods high in phosphorous, found that dairy was one, had kefir on hand so drank several glasses and sure enough the awful fatigue went away. This allowed me to keep taking the B-1, but I have to supplement a couple of times a week with monosodium phosphate.

The B12 and methylfolate did not seem to affect my phosphorous levels - just the B-1 did that.
 

drmullin30

Senior Member
Messages
217
Electrolyte and mineral balancing have been the hardest part of all of this to figure out. I've experienced sudden and severe deficiencies in all of the following at one point or another since starting methylation/b12 protocols:
- potassium
- calcium
- copper
- molybdenum
- magnesium
- zinc
- sodium
- phosphorus
- boron
- silicon
- chloride
The problem also seems to be antagonism of certain minerals against one another. At one point, at my worst, I needed 6 grams a day of potassium just to keep the heart palpitations and muscle spasms at bay. Then suddenly, one day I was sodium deficient with hardcore symptoms. Potassium is a sodium antagonist and without processed food, I wasn't getting enough sodium. Calcium and phosphorus can send each other out of whack, same with molybdenum and copper, sulfur and copper, magnesium and silicon etc.

Throw oxalate dumping into the mix which can randomly strip the body of various minerals at any given time depending on what's being eliminated and you have a recipe for confusion and suffering.

High dose b12 and b6 supplementation in the long term can cause calcium deficiency if you take too much and high dose folate can leave you zinc deficient. Lately my electrolyte imbalance leaves me freezing cold until I get the balance right and it seems to shift day to day.
 
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Messages
54
Wow, so glad I clicked on this thread!

Really pleased to hear that it’s been of use to you.

You’ve helped me too as you’ve got me wondering if low potassium is behind my insomnia as I have all of the symptoms such as the palpitations and muscle spasms ( despite bloods that were apparently in range). So I’m going to get some coconut water today to see if it helps. I really hope it does as I’ve been awake since 1:30am and I’d only taken 500mcg of hydroxocobalamin early yesterday morning.

I have tried methylfolate but that kept me awake even more than the B12, but thank you for the suggestion!