Active B12 Protocol Basics

[TinaT]

I read last night on one of these threads of someone who had that. She said it went entirely away when she got her folate high enough. There are a number of people including Freddd who found that folate reduced bloating, edema, etc. It is on Freddd’s list of paradoxical folate symptoms.

Thank you. Do you know how much is enough folate? I'm having a very rough time. I'm sorry you are, too. I accidentally gave myself 5 mgs instead of a planned 1 mg yesterday (of methyl B12, injection), using the wrong needle. Last night was really bad. I can't imagine nights 2-4. My BP at one point was 89 and I'm so confused about whether that could be sodium or potassium or both??

Also do you know how much folate daily? Methylfolate is so bad for me. I read in a book that is more likely to cause side effects than methyl B12. Plus I can usually tell that bad symptoms happen after the folate, like soar throat, worsened reflux, stuffy nose, etc. I mean bad like no way to sleep bc reflux gets so bad again.

I've been trying folonic acid but that isn't helping the bloating.

Does methylfolate give you any bad effects? Did those go away? They would make it impossible for me to sleep without probably soon needing pepsid again, and I swear that stuff was killing me. I'm very thankful to have been able to stop pepsid after the first injection. But I still can't eat normal food without pain -- and without reflux getting worse again.

I fear that I might have let this go for too long to heal. Also I had surgery two years ago, then dental work one year ago. Nitrous oxide shuts down B12 in the body. I don't know whether they used that during the surgery. I had mild symptoms after the surgery. But then much worse after the dental procedure last February or so. Two stage root canal.

Plus I'm vegan and a runner and was taking high doses of antacids and eating a low acid diet. No B12 supp bc that was acidic and I thought it would be temporary. Sorry I'm not sure whether I've already said this! But basically my B12 deficiency is likely severe. I went through a checklist for doctors yesterday -- and definitely based on symptoms, mine is severe.

ETA: my diet is mostly whole food, plant based, with salt to taste. Almost no processed food. I have added a little meat for iron at dinner. But basically my diet is high potassium, relatively low sodium, compared probably to most people. I don't know whether that's changing things. But I still think the low BP is *probably* very low potassium. And I'm just too afraid to take enough to fix it bc potassium normally lowers your BP. So when my BP is 89-100 on the top number, I really don't want more potassium without being sure.

 

[Idie]

Hi Tina

I have had a pretty good turn the last three days. Let me tell you what has happened to me. I have been at this a month. The turn for the better went something this. Titrating folate higher and higher all the while keeping my B12 high. On Wednesday, I upped my morning dose of folate to 15mg along with my B12 injection——the potassium needs were very strong all morning and it was a tough 4-5 hours BUT here is the kicker—-all of a sudden my IBS (constant gurgling in my stomach and D) literally just stopped and has not come back for the last 3 days. I could not believe it happened that fast. I took my other 3 doses that day 7.5 mg each time along with 20 mg (sublingual of B12 each time).I felt better and better as the day progressed. My potassium intensity reduced by at least 50%. I am also able to be up and around more although not perfect but definitely better….encouragement to keep going. I also slept 6 hours the last 3 days.

What remains now is the following pattern. About 2 1/2-3 hours after taking doses, I get intense tingling in my lips, my teeth ache, and my feet feel much more numb and I have an internal tingling sensation (best I can describe it). I also get kinda dizzy about that same time (I take that to mean that the folate and B12 are getting into my brain which I see as a positive) The morning dose seems to be the most challenging but as the day progresses and I get more doses into my body the better I begin to feel. I suppose this happens because I don’t do doses in the middle of night and by morning I’m needing it more. I can also tell, in a good way, when it is time to take a dose,

The first month was not fun as we have talked about but I am definitely making a turn (thank God). I take a lot of folate and have followed what Freddd has generally suggested ——his explanations made sense to me. I didn’t second guess the protocol at every turn which is easy to do during the start up phase because, let’s be honest, it is miserable and intense.

Here is my take on my experience. I had to “consistently“ get the doses in——I did not entirely stop and start so consistency was key. I adjusted doses of folate but NOT the B12 as to the intensity of the potassium need but I did not stop. I also believe that my body was doing a lot of repair and that you have to reach a certain point where the repairs are significant enough to feel it and then the “ah ha moment” that I have now had.

I also know that “reversals“ are common with this recovery so I know there will be a few days where that will happen but I am feeling encouraged finally after a month. I tell me husband when I have a reversal please remind me that there has been improvement so I don’t get all caught up in the intensity of the moment and then think the protocol is not working.

I hope this explains what I have done. The big learn for me was the folate——I had not taken enough the first time I went through this and it eventually showed itself.

I

 

[TinaT]

have had a pretty good turn the last three days. Let me tell you what has happened to me. I have been at this a month. The turn for the better went something this. Titrating folate higher and higher all the while keeping my B12 high. On Wednesday, I upped my morning dose of folate to 15mg along with my B12 injection—

That's wonderful Idie! Good for you.. congratulations.

I'm confused about folate. So I'm looking at the bottle of Solgar methylfolate. That has 1333 mcg. I'm not sure how mcg translates to mg. Is that like 13.3 mg?? Or what brand / amount are you taking? Meaning one pill or multiple?

Also, what are you taking for the B12 that starts with an A? Is that also known as dibencozide? Bc I couldn't find the brand recommended by Fred at the beginning of the protocol. So I purchased something called natural factors from Iherb. Do you have a better brand? And how much of that do you take?

My friend (scientist) has been researching stuff for me this morning. I've been taking a buffered C and drinking lots of alkaline water. Apparently both of those can lower you BP. And I drink a lot of alkaline water. This was a weird day though bc I didn't have the other low potassium symptoms like muscle twitching (however I did have constipation for sure). So now when I DO have those other symptoms, I'm going to be hopelessly confused!!

I was really having a tough time this morning with a bp of about 89/90 most of the morning.

 

[Idie]

That's wonderful Idie! Good for you.. congratulations.

I'm confused about folate. So I'm looking at the bottle of Solgar methylfolate. That has 1333 mcg. I'm not sure how mcg translates to mg. Is that like 13.3 mg?? Or what brand / amount are you taking? Meaning one pill or multiple?

Also, what are you taking for the B12 that starts with an A? Is that also known as dibencozide? Bc I couldn't find the brand recommended by Fred at the beginning of the protocol. So I purchased something called natural factors from Iherb. Do you have a better brand? And how much of that do you take?

My friend (scientist) has been researching stuff for me this morning. I've been taking a buffered C and drinking lots of alkaline water. Apparently both of those can lower you BP. And I drink a lot of alkaline water. This was a weird day though bc I didn't have the other low potassium symptoms like muscle twitching (however I did have constipation for sure). So now when I DO have those other symptoms, I'm going to be hopelessly confused!!

I was really having a tough time this morning with a bp of about 89/90 most of the morning.

Hi Tina—-is your heart rate still elevated. Mine has been all along—-it is getting a little better. How I calculate mcg to mg is 1,000 mcg is 1 mg. So your Solar is 1.3 mg.

The other brands that I mention below are already calculated into mg. I personally take Methyl Pro and bought it in all different strengths so that I could do titration. Solar is a good brand but it is smaller doses so I moved to Methyl Pro and Quatrafolic. They sell the Methyl Pro in 2.5 mg, 5 mg, 7.5 mg and 15 mg. Quatrafolic is more expensive and I buy the 5 mg of that because I want to have it on hand for those times when the MethylPro becomes a little less effective. Freddd says this can happen and if you switch for a week and then go back to the Methyl Pro, it works great again, so I have both on hand when I will have to switch. I would add that there are other brands that are less expensive BUT I have not seen any threads where people talk about the effecitiveness of those brands. A lot has changed in the last five years as more and more Methylfolate brands are coming on to the market. A test of those brands would be most helpful. Maybe some folks on these threads will do that so that we know. I hope more and more manufacturers will offer MethyFolate—maybe that will drive the prices down.

B12 you reference is Adenosylcobalamin.——it has been historically called Dibencozide I think. The brand that Freddd referenced is not being made anymore—-at least I haven’t been able to find it. I bought a sublingual brand from IHerb—don’t recall the brand. It is 1,000 mcg (1mg). I have not started that yet. I had trouble with Adenosylcobalamin last time so I want to get the B12 and Folate running very smoothly and then I will attempt it. I saw that Freddd had said to try to get the B12 and Folate to a point of not having any reaction and then try the Adenosylcobalamin and plan to take Methyl B12 on either side of the Adenosylcobalamin AND be ready to need more folate for a few days and more potassium. It worked with less intensity (misery) for the person he advised to do it this way, so that is my plan. As to dosage, Freddd advises once per week at 10 mg. He and others said that doing it that way reduced MethylTrap. Lots of opinions on these threads as to Adenosylcobalamin and the reaction to it. Some people say it made them feel better——-not me. Freddd has said it rarely has a significant “start up” up after the first but it there start up the second and third time, it should be less. That was never my experience so I admit I’m a little freaked out but it I know I need to get it in so I can get the deadlock quartet working. So, I guess I’m rare everytime, .

One last thing about Adenposylcobalamin—-if it comes in capsules, I would think you could empty the capsule under your tongue.

This is confusing so it is ok to ask all kinds of questions. The way the threads are laid out you can spend hours (and I have) reading through all of it. I also learn from others (beyond Freddd) who have made mistakes. Try to find posts from Athene*. She posted a lot early in her journey and she made some mistakes along the way and she shared those. In the end, she went back to Freddd’s protocol and finally succeeded and was no longer bed bound, home bound, etc. She had been sick for over 20 years and lots of misdiagnoses as it relates to B-12 etc.

 

[TinaT]

How I calculate mcg to mg is 1,000 mcg is 1 mg. So your Solar is 1.3 mg.

So you are taking around 10 of those pills daily? I mean approximately?? Wow that's a lot lot.

 

[TinaT]

This is confusing so it is ok to ask all kinds of questions. The way the threads are laid out you can spend hours (and I have) reading through all of it.

Thank you for all of the great explanations. I'm trying to read more every day. Your experiences and explanations are also invaluable. Thank you again and again Idie.

 

[TinaT]

Hi Tina—-is your heart rate still elevated

My problem has mostly been a very (too) low BP. But I'm wondering now whether that's always related to potassium. I think sometimes it might be -- when I also have twitching. But other times, maybe not. My friend suggested that it could be high doses of vit C or alkaline water, or both. So I stay confused unfortunately.

I'm just wondering -- how much B12 are you taking? I really wanted to follow the protocols that I found from the B12 society by injecting 1 mg every other day. I'm wondering whether that is roughly equivalent to what you have been taking.

Is it too much to hope / believe that normal doses of this stuff, including methylfolate, might work?

And are you taking the rest of the protocol including like Vit E, high doses of zinc, etc?

 

[TinaT]

Quatrafolic is more expensive and I buy the 5 mg of that because I want to have it on hand

What brand of the quadrafolic?

Oh nevermind -- I see methyl pro sells that type.

Are you avoiding eating food with folate? I really can't imagine doing that.

Also did you go straight into the higher doses of methylfolate or did you titrate? If titrate, on what schedule?

 

[TinaT]

@Freddd I'm working my way slowly through this entire thread, cutting and pasting things that I want to review later.

I would really appreciate if you would answer my questions so far:

1. Someone said that you said not to take methylfolate with iron or vitamin C. Do you still think that's true? I'm asking bc I also have iron deficiency and the iron that works best for me, from Thorne, has vit C and methylfolate included.

2. Do I need to get all of the vitamins individually? Or are some combos good enough? Example I'm currently taking B Minus and that seems to agree with me.

3. Would you please explain why such high doses of Zinc without copper? I thought those were always needed together. And is it enough if we are sensitive to take less like 15 mg, a typical standard dose?

4. Why do we need vit E? I always thought that was a problem for some reason, like other health risks.

5. I haven't seen you mention sodium. But my friend who is a scientist was trying to help me and she commented that potassium + water would wash out sodium (especially a problem for someone who really wants to be active outside in Florida -- though that ability is gone at the moment). So do you think adding adding sodium would reduce the effectiveness of the potassium?

6. I'm just curious why you never mention iron.

7. I have burning in the roof of my mouth. I just noticed that went away for a few hours after I took iron with methylfolate (Ferrasorb by Thorne). I think if this as related to the reflux. Could that be a sign of folate deficiency? Or more likely just a coincidence?

8. Do you think 1 mg injected methyl B12 every other day is enough? I buy from a compound pharmacy that seems pretty good -- the bottle is dark. I have trouble with long duration sublinguals bc they are acidic. Not to mention reflux has already made me very concerned about my teeth. If you don't think the injections are good, can you tell me your latest current recommendations on best brand for everything in the deadlock quartet? I have already ordered quite a few things that you recommended years ago. I'm wondering if anything has changed as far as brand recommendations.

9. Do you think there is any problem with waiting until I feel potassium symptoms to take potassium? And then just going by feel to get rid of them, let's say a couple hundred mgs at a time?

Thanks very much! You've been a wealth of knowledge for many people over the years. I greatly appreciate your taking your time to answer the questions of a newbie.

Tina

 

[TinaT]

Here is my take on my experience. I had to “consistently“ get the doses in——I did not entirely stop and start so consistency was key. I adjusted doses of folate but NOT the B12 as to the intensity of the potassium need but I did not stop. I

Hello Idie. I've spent the day reading this forum. Wow there's a lot to learn and so much history. I'm sure you must have read that Fredd advises cutting other B vitamins if necessary to avoid potassium that's out of hand. I need to check my B vitamins for the dosages he recommends.

I have a question for you. I have read and understand now that he really thinks these large doses are necessary for healing. That's really depressing to me for a lot of reasons. I've struggled SO much before even reaching this forum and discovering what I now think is a profound deficiency. I really, really wanted to stick with the lower doses and the potassium situation is still terrifying to me.

Anyway -- my question is -- does the methylfolate affect your sleep? Bc one of the brands of methylfolate that I have (from seeking health) says that it must be consumed within 5 hrs of sleeping to avoid sleep interference. For me, that kind of warning usually means more like 8-10 hrs before sleeping.

What do you think? Does taking methylfolate at bedtime bother you?

I ordered the brand of methylfolate you suggested today. Thank you.

 

[TinaT]

I know I've asked way too many questions!! I just can't describe the degree of suffering I've endured, yet I'm sure it completely pales in comparison to many people on this site, which is just tragic.

I will spare you all of the details. But, for real, a very high percentage of every single night and many days, for 3 years solid, has been a living hell. The first year and a half might have been unrelated. But then I had surgery (April 2021) and a two part root canal (Feb 2022).

After the dental stuff was when I was forced to become intimately familiar with reflux. (And I was already being destroyed emotionally by a serious ear condition, resulting tinnitus, and drastically impaired sleep -- something I had been battling for 1.5 years before the dental stuff).

But for more than a year, I have barely been able to enjoy any good food. I'm eating an extremely bland, low acid diet. I can't lay flat. I sleep sitting almost straight up wearing a neck collar. It's absurd. For various reasons, this means I can't really have sex. (I also have ureaplasma infection -- but I can't start that hormonal treatment until I'm more stable with this situation.) These things are crushing emotionally.

I have spent thousands of hours and dollars trying to find a cure. I have worked on this non-stop most days since it started.

I also haven't slept well since I started the methyl therapy (and had massive problems before with sleep but I used to be able to identify a culprit and fix it, then get some sleep).

I was OVERJOYED when my reflux seemed like it was GONE the night after the first shot. It was a complete miracle. I stopped all reflux meds bc I just knew immediately that I didn't need them.

But fast forward and now my reflux is back every day. If I eat anything other than totally bland, I pay the price. I've had to start taking reflux gourmet again on some nights. Thankfully, I still haven't needed pepsid, which is a miracle. But the state of my reflux is not good!

It does seem different. The roof of my mouth hurts (burns) and the sides of my tongue. Sometimes my throat but maybe not as much.

My question is whether this is known to be caused by low potassium or low folate or did I just not respond well enough to the B12? It's really depressing to have resd several people were immediately better and never regressed.

I wonder whether this might be caused by the paralysis caused by low potassium. Or else might be the cause?

I'm really at a very low point with the thought that I'll never enjoy good food, or laying flat, or sex, or just sitting around without physical pain, again. My mouth feels good in the mornings. But starting sometime every afternoon, the pain begins, then I'm in constant pain for the rest of the day.

So I would really, really appreciate any suggestions that might finally help me live my life without this pain.

Any ideas??

@Idie @Freddd

 

[Idie]

So you are taking around 10 of those pills daily? I mean approximately?? Wow that's a lot lot.

I take 7.5 mg of folate 4 times a day. The brand I use if Methyl Pro. Yes, it is quite a bit, much more than I originally used. Folate is a big player in all of this,

 

[Idie]

My problem has mostly been a very (too) low BP. But I'm wondering now whether that's always related to potassium. I think sometimes it might be -- when I also have twitching. But other times, maybe not. My friend suggested that it could be high doses of vit C or alkaline water, or both. So I stay confused unfortunately.

I'm just wondering -- how much B12 are you taking? I really wanted to follow the protocols that I found from the B12 society by injecting 1 mg every other day. I'm wondering whether that is roughly equivalent to what you have been taking.

Is it too much to hope / believe that normal doses of this stuff, including methylfolate, might work?

And are you taking the rest of the protocol including like Vit E, high doses of zinc, etc?

I need much more than the what the society promotes. When I try the low doses, my symptoms continue to plague me. Also, Methylcobalamin goes in and out of your system fairly rapidly.

Here is what works for me (It is different for everybody). I will also say larger doses penetrate deeper for me.

Each morning 5 mg injection of B12 Methylcobalamin, plus 20 mg of sublingual B12. I want to make sure my blood level is very high in B12 so that I get good diffusion into the tissues and Cerebral Spinal Fluid. I also take 7.5 mg of folate and a low dose B-complex.

At my next 3 doses for the day (spread out) I take 20 mg of sublingual B12 and 7.5 mg of folate. I also take low dose B-complex around dinner.

I need to add Adenosylcobalamin and L-Carnitine—- I have not done that yet but plan to next week. All depends on what reaction I have to the Adenosylcobalamin.

I also take a few other basics. I also intend to add Lithium in because my test shows I’m at zero.

 

[Idie]

I know I've asked way too many questions!! I just can't describe the degree of suffering I've endured, yet I'm sure it completely pales in comparison to many people on this site, which is just tragic.

I will spare you all of the details. But, for real, a very high percentage of every single night and many days, for 3 years solid, has been a living hell. The first year and a half might have been unrelated. But then I had surgery (April 2021) and a two part root canal (Feb 2022).

After the dental stuff was when I was forced to become intimately familiar with reflux. (And I was already being destroyed emotionally by a serious ear condition, resulting tinnitus, and drastically impaired sleep -- something I had been battling for 1.5 years before the dental stuff).

But for more than a year, I have barely been able to enjoy any good food. I'm eating an extremely bland, low acid diet. I can't lay flat. I sleep sitting almost straight up wearing a neck collar. It's absurd. For various reasons, this means I can't really have sex. (I also have ureaplasma infection -- but I can't start that hormonal treatment until I'm more stable with this situation.) These things are crushing emotionally.

I have spent thousands of hours and dollars trying to find a cure. I have worked on this non-stop most days since it started.

I also haven't slept well since I started the methyl therapy (and had massive problems before with sleep but I used to be able to identify a culprit and fix it, then get some sleep).

I was OVERJOYED when my reflux seemed like it was GONE the night after the first shot. It was a complete miracle. I stopped all reflux meds bc I just knew immediately that I didn't need them.

But fast forward and now my reflux is back every day. If I eat anything other than totally bland, I pay the price. I've had to start taking reflux gourmet again on some nights. Thankfully, I still haven't needed pepsid, which is a miracle. But the state of my reflux is not good!

It does seem different. The roof of my mouth hurts (burns) and the sides of my tongue. Sometimes my throat but maybe not as much.

My question is whether this is known to be caused by low potassium or low folate or did I just not respond well enough to the B12? It's really depressing to have resd several people were immediately better and never regressed.

I wonder whether this might be caused by the paralysis caused by low potassium. Or else might be the cause?

I'm really at a very low point with the thought that I'll never enjoy good food, or laying flat, or sex, or just sitting around without physical pain, again. My mouth feels good in the mornings. But starting sometime every afternoon, the pain begins, then I'm in constant pain for the rest of the day.

So I would really, really appreciate any suggestions that might finally help me live my life without this pain.

Any ideas??

@Idie @Freddd

Hi Tina,

Every single symptom you listed above is all tied to B12 deficiency (my opinion). I say that because I had ALL those same symptoms. I thought my life was over——-you have to know it isn’t. If you stay the course and aggressively take care of your B12, your life will come back and nearly all of those problems will fade away. You did not get sick overnight so we can’t expect to heal overnight but you can and will get better. For example, I slept half sitting up because if I laid on my side or stomach or laid flat my chest hurt. I thought I had acid reflux. I was afraid to eat. I had such pain in my throat and chest. I was about 6 weeks into B12 treatment and I woke up one morning on my side and no pain. I slept sitting up for a while longer because I was so afraid it was going to come back. Even now I cant believe I was on PPI’s for almost a year and I didn’t have acid reflux.

Did they use nitrous gas when you had your dental procedure? If they did, that lowered your B12 to even lower levels. It is common to hear people talk about their symptoms getting worse or starting after a dental procedure where nitrous gas was used.

My mouth and tongue were sore too. My ears rang so loud I couldn’t think. I could not sleep, in fact I once went 3 days without shutting my eyes. I was dizzy and my balance was off. I felt dreadful and it was a living hell. I couldn’t get a diagnosis for over 2 years. Looking back it is very hard not to be angry,

Even today, some of my symptoms are amplified and I have some new symptoms coming out but I know it is for the short term. My nerves are waking up!

This might help……

1. When starting B12, it is not unheard of to have a huge improvement (your reflex went away) BUT then it comes back. No one really knows why that happens but it does, It did to me. My first b12 shot, I felt like my old self and then twenty four hours later all the symptoms came raging back and it took awhile for them to get better. I was aggressive with my B12 (everyday) and the symptoms began to retreat, and then they came back and then they got better—this happened a few times and then they were gone,

2. Low potassium doesn’t cause B12 deficiency symptoms like numbness or paralysis. Low potassium causes things like dizziness, heart palpitations, constipation, etc. It can be dangerous if it gets too low and you can feel really miserable. It is true that high potassium isn’t good either but the body (if you do not have kidney problems) helps regulate your potassium.

3. Once you start giving your body what it is starving for (B12), you may see new symptoms emerge which seems counterintuitive. This is the insidious part of B12 deficiency. It was doing damage that you were not even aware of and once the nerves start waking up, you will begin to see where all the damage was.

4. There are a few ways to look at treatment. Because B12 is very safe, I have never worried about getting too much. Food is not the answer—-I have always been a good eater, healthy for the most part and yet I got the deficiency. Plenty of protein in my diet and I still got it. I tried eating even more healthy, it didn’t fix the problem.

5. B12 deficiency is not a singular issue—-folate is a co factor, then there is a b complex, etc. So for me, I try to look at the issue from a 360 lens when trying to give my body what it needs. I consider my B12, folate, etc my food—-a very different mindset for me.


I am so saddened and sorry to hear what you have been through. There really is a light at the end of the tunnel.

 

[JES]

Every single symptom you listed above is all tied to B12 deficiency (my opinion). I say that because I had ALL those same symptoms. I thought my life was over——-you have to know it isn’t. If you stay the course and aggressively take care of your B12, your life will come back and nearly all of those problems will fade away. You did not get sick overnight so we can’t expect to heal overnight but you can and will get better. For example, I slept half sitting up because if I laid on my side or stomach or laid flat my chest hurt. I thought I had acid reflux. I was afraid to eat. I had such pain in my throat and chest. I was about 6 weeks into B12 treatment and I woke up one morning on my side and no pain. I slept sitting up for a while longer because I was so afraid it was going to come back. Even now I cant believe I was on PPI’s for almost a year and I didn’t have acid reflux.

The symptoms discussed here do not sound anything like B12 deficiency to me. The textbook symptoms of B12 deficiency are:

• extreme tiredness.
• a lack of energy.
• pins and needles.
• a sore and red tongue.
• mouth ulcers.
• muscle weakness.
• problems with your vision.
• psychological problems, which can range from mild depression or anxiety to confusion and dementia.

Reflux is not among the typical listed symptoms. According to ChatGPT:

Gastroesophageal refux disease (GERD), commonly known as acid reflux, is not typically considered a symptom of vitamin B12 deficiency. However, vitamin B12 deficiency can cause a variety of symptoms related to the digestive system, including nausea, vomiting, diarrhea, constipation, and loss of appetite.

The other issue is that many of the listed B12 deficiency symptoms are so broad that they apply to a million other diseases. I went through the path of wishing I had X number of easily treatable conditions, but when my ME/CFS symptoms ultimately didn't respond to those treatments, it took several years to accept it wasn't as simple as B12 or methylation.

But it's not the one-size-fits-all cure or even treatment for ME. Could you cite your sources re how many ME patients have recovered using B-12 as a stand-alone?

A single digit number of people here in my experience have reported being cured or close to cured after various methylation protocols. If you literally lack the capacity of processing B12 in the small intestine due to pernicious anemia or some rare genetic factors, then yes, obviously this is as simple as supplementing B12 and supporting factors like potassium.

In most people who are sick with ME/CFS type symptoms, the issues with our bodies go far beyond lacking a single vitamin or two. Even a functional approach focused on supplements and vitamins is typically trial and error with dozens of different things. Over the years I have found *certain* things that worked for me in terms of supplements, but it was not like reading a textbook, more like trial and error.

The good news is that treatment with B12 is generally safe, so it doesn't do much harm to try it out. In my case supplementing with methylcobalamin resulted in both increased anxiety and fatigue, which didn't go away despite false hope given to me that it would be "temporary".

 

[Idie]

The symptoms discussed here do not sound anything like B12 deficiency to me. The textbook symptoms of B12 deficiency are:

• extreme tiredness.
• a lack of energy.
• pins and needles.
• a sore and red tongue.
• mouth ulcers.
• muscle weakness.
• problems with your vision.
• psychological problems, which can range from mild depression or anxiety to confusion and dementia.

Reflux is not among the typical listed symptoms. According to ChatGPT:


The other issue is that many of the listed B12 deficiency symptoms are so broad that they apply to a million other diseases. I went through the path of wishing I had X number of easily treatable conditions, but when my ME/CFS symptoms ultimately didn't respond to those treatments, it took several years to accept it wasn't as simple as B12 or methylation.


A single digit number of people here in my experience have reported being cured or close to cured after various methylation protocols. If you literally lack the capacity of processing B12 in the small intestine due to pernicious anemia or some rare genetic factors, then yes, obviously this is as simple as supplementing B12 and supporting factors like potassium.

In most people who are sick with ME/CFS type symptoms, the issues with our bodies go far beyond lacking a single vitamin or two. Even a functional approach focused on supplements and vitamins is typically trial and error with dozens of different things. Over the years I have found *certain* things that worked for me in terms of supplements, but it was not like reading a textbook, more like trial and error.

The good news is that treatment with B12 is generally safe, so it doesn't do much harm to try it out. In my case supplementing with methylcobalamin resulted in both increased anxiety and fatigue, which didn't go away despite false hope given to me that it would be "temporary".

Hello Jes,

I am so sorry that you have been unable to find something that has worked for you. You are right not everyone has found a solution BUT many have, You are also right that there is a list of B12 deficiency symptoms that get published—-however, I can personally attest to having way more symptoms than the standard fare and those symptoms all improved once since I have a regimen that includes B12. I had all the items on the list you provided and dozens more. If you talk to those that have had B12 deficiency, they will tell you that list is woefully incomplete and in some respects caused a delay of treatment because it wasn’t initially a spot on match,

I would never suggest that I am an expert in CFS but do I know dozens and dozens who have been diagnosed as such who have improved. There is no one size fits all but the sharing of experiences here has been most helpful. Cure is a pretty strong word, I don’t imagine that I will ever be cured.

 

[YippeeKi YOW !!]

A single digit number of people here in my experience have reported being cured or close to cured after various methylation protocols.

My guess is that it's a low single digit. I've only come across one, and they were never really sure that they had ME

The good news is that treatment with B12 is generally safe, so it doesn't do much harm to try it out. In my case supplementing with methylcobalamin resulted in both increased anxiety and fatigue, which didn't go away despite false hope given to me that it would be "temporary".

For some reason, an awful lot of us seem to be hyper-sensitive to B vitamins, with B-12 leading the way, and that includes the methyl group of B's. But all the other B vits seem to march in lock step behind the B-12 as well.

I had to eliminate all B vits for around 2 years before I could very slowly and carefully add them back in, and I had the same response to them that you did ... profoundly increased fatigue, serious anxiety, insomnia ....

 

[TinaT]

The symptoms discussed here do not sound anything like B12 deficiency to me. The textbook symptoms of B12 deficiency are:

I've been all over the Internet reading about B12. There were several what I would consider reputable sources saying that B12 can cause reflux, abdominal distension, and constipation (and my board certified gastro doc has been trying to help my constipation bc, according to him, healing constipation will often heal reflux).

I can't link every source -- they often vary.

Also many sources say that either B12 or iron deficiency can present as chronic fatigue (cause the same symptoms).

Here is one source talking about both heartburn and fatigue (other sources specifically mention inability to recover from exercise):

http://www.b12d.org/protocoltreatment

You have to download the symptom guide and treatment protocol.

That is a protocol designed for doctors. They cite their sources at the bottom of the page.

They specifically say that anyone with ME / CFS "like presentation" should be tested for B12 and possibly a therapeutic trial on treatment.

I have read similar info from a medical paper on low iron (can cause reflux, IBS, and CFS like symptoms).

 

[TinaT]

If you literally lack the capacity of processing B12 in the small intestine due to pernicious anemia or some rare genetic factors, then yes, obviously this is as simple as supplementing B12 and supporting factors like potassium.

I don't know about anyone else on this site, but I have a unique history which definitely suggests both a B12 and iron deficiency could be the cause of many of my problems.

I was a plant based eater when I had surgery in April of 2021. Surgery permanently inactivates some amount of B12 so can be a big problem for those who are already low. The book "Could it be B12?" recommends that everyone potentially low in B12 have a shot before surgery then possibly treatment afterward. After surgery is when I developed mild reflux and abdominal distension, despite having no risk factors for either.

Then around February of 2022, I had a two part root canal. I went under nitrous oxide both times. My reflux became MUCH worse and totally life-altering, at that time. Throughout the year, I developed other symptoms that from the protocol above, I now believe were at least started bc of a B12 deficiency. The list is long but included inability to recover from viral illness as quickly as I would have in the past (like weeks, not days). During those weeks, I couldn't exercise without causing total insomnia, so that was basically PEM.

Nitrous oxide is known to deactivate B12.

Because I had severe reflux, I consulted many doctors including two leading experts. They both said that I had nerve damage from the surgery, and put me on high doses of pepsid / reflux gourmet, and a low acid diet. That was more than a year ago.

Long term antacid use is known to reduce B12. And a B12 deficiency definitely can damage nerves.

Also, because they told me not to ingest anything acidic, and my B12 supplement was acidic (and burned my mouth and throat), I decided to stop supplementing temporarily, assuming my liver stores would get me through. Based on what I know now -- I'm sure my liver stores would already have been low then reduced a lot more from the surgery / dental work.

I also developed constipation and abdominal distension. I was told that vagal nerve damage caused partial gastroparesis (i.e., partial paralysis of my digestive system). And that vagal nerve damage causes reflux.

What no doctor could tell me was why my nerves weren't healing normally.

Anyway bc I had constipation, I consulted a nutritionist who recommended that I stop drinking fortified soy milk, which was my only remaining dietary source of B12 (I eat very little processed food.) That's not a great source anyway but at least I had something. I stopped that several months ago. Shortly after that time, all of my symptoms got considerably worse.

I had suspected a possible B12 deficiency 8 months ago. But I read just a little, had a blood test, and decided that my B12 was fine. I only learned later that there are many issues with the serum B12 test as far as diagnosing a deficiency. I only started reading again out of desperation, bc no doctors could help me. I really regret not doing more testing at the time.

(Similar story with iron -- which my hematologist said could be causing all of my symptoms -- and my history explains why I would be low, in addition to the fact that I was having very heavy periods (ironically a severe B12 deficiency symptom -- which can then contribute to an concomitant iron deficiency) and running long distances in the Florida sun -- which depletes iron from the foot strike and sweat.)

And many of my symptoms have substantially improved since I started the B12 injections, including my reflux. I no longer have heartburn, which was horrible. And I don't need pepsid. I could not sleep at all without pepsid before -- my heartburn and reflux were way too extreme. I still have reflux if I eat acidic food. But I'm not taking anywhere near the dosages in this protocol bc I can't handle them.

I think I am going through a refeeding with many vitamin and mineral deficiencies, caused by the long-term antacid use. And B12 and iron are the biggest players, although I probably had many deficiencies based on my extremely limited diet and high dose pepsid / reflux gourmet for over a year. I've started taking a basic panel of vitamins and minerals and definitely have felt better as far as the symptoms that caused me to start the B12 injections.

However -- the side effects from the injections and the cofactors have made me feel much worse at times bc, I think, of low potassium (which screws with BP, and pulse rate, and causes worsened constipation, and can kill you) and low folate (which is causing water retention, which I never had before). Those are brand new symptoms that are extremely concerning -- actually more concerning than those that I had before bc low potassium is so dangerous. And water retention seems pretty scary, too.

I think it's impossible for anyone to know what might be affecting someone unless they know the individual's personal medical history. And don't hold your breath for any doctor to know or care enough to put together all of those pieces.

 

[TinaT]

The other thing is my understanding from B12 sources is that deficiencies are very common, even among meat eaters.

I want my husband to do a trial -- and he's a super active guy. But he has what could be subtle B12 deficiency symptoms. I'm actually really worried that his symptoms could get worse after what had happened to me, even though he seems very healthy. He has worsening and approaching severe tinnitus (thankfully hasn't really bothered him -- some people can ignore the sound -- but it's been starting to bother him more -- and I know that alone can ruin your life if it gets bad enough), very dry skin to the point that he's been really concerned about it (trying many different lotions, etc), restless legs most nights, mild reflux, and an extreme sensitivity to basically yard work -- often causes many weeks of all over body severe itching rashes. I realize other things could cause these issues -- but so could B12 -- so he needs to find out Thankfully he doesn't share my history but he has had a 3 surgeries in the last few years. And he eats a mostly plant based diet.

And one of my good friends. She's a light meat eater without any surgery history. But she has several issues from a constellation of symptoms without any real known cause. (I realize there could be other causes.) Based on what I've read, I have encouraged her to at least get tested. The book says basically even tests can be in range and, depending on history and symptoms, a trial of B12 might be indicated.

Another thing is that, IF someone has a B12 deficiency, getting better isn't nearly as simple as it sounds. These cofactors cause serious problems and it is not easy figuring out how much you need of what. I'm just hoping that those things eventually resolve, as the deficiency resolves.

And the last thing is that not everyone can recover from a B12 deficiency. The book says that with neuro damage, recovery is about 50/50, though most people at least improve.