Think I've Hit Donut Hole Deficiency?

[Nikki7]

I think I've hit major donut hole deficiency. I've been on 3-4000mcg a day of methylcobalamin and 800mcg divided methylfolate for approx a month. Now I feel I'm stuck or going backward. Body just feels really swollen. When I add any adeno (even the tiniest amount) I have a huge added need for more methylofolate. I have read and try and understand the titration. I should up my methylfolate a lot? Take 3-4 of 800mcg ---and then what do I do? Do I drop back down to maybe 1000mcg daily (up it a little each day) or continue to take the 3-4 800mcg daily? If anyone can explain, please help. You guys are amazing at helping!!

 

[whodathunkit]

I should up my methylfolate a lot?

This is a decision that is entirely up to you based on what you think is best for your body, what side effects you can or are willing to tolerate, and what you learn by reading and researching.

We can't tell you what to do here. But I can share my personal experience, which is below. And again, what you decide to do in this situation is entirely up to you. Owning our responsibility in what we do to help our health, even if it's swallowing a pill prescribed to us by a doctor, is a big part of our health.

Anyway, what worked for me is increasing methylfolate in increments, per Freddd's protocol, until my side effects abated to where they were livable and I could coexist with them for an indefinite time. It's a subtle distinction between sides you can live with and discomfort, but the distinction does exist.

Worth noting is I crashed several times while reaching this "stable" high level of methylfolate, and then I crashed a couple more times while maintaining it. But the crashes didn't necessarily mean an increase in daily sides...my crashes were always more like purges or detox and my sides woudl usually get a bit better afterwards. Crashes usually lasted a week or so, but they never felt "malignant", if that makes sense. It was like I had a bad flu but not something that worried me. If I let the crash run its course, it went away.

Also worth noting is I was on much higher doses of methylcobalamin than you are. For the whole first year I was on Freddd's protocol, I injected about 5mg of methylcobalamin per day. In my experience, taking a really high dose of methylfolate requires a very high dose of methylcobalamin to go with it. Other's mileage may vary.

Also had to stop and start LCF and adenosylcobalamin a few times. These are both very potent supplements and can provoke a myriad of symptoms like anxiety, insomnia, etc.

Listening to your body and stopping something for a while if necessary, then maybe circling back around to it with a modified approach, is important. Pushign through or ignoring potentially dangerous symptoms like heart palps or dizziness shouldn't be done. Ever. Stopping and trying to figure out what the problem is and if it can be fixed is crucial.

Pushing through an extremely runny nose, minor muscle aches, a bit of a fever, or even anxiety or short-term insomnia is more of a personal choice. Although personally, I won't push through much insomnia. If it affects my sleep even for just a couple nights I stop it for a while and modify my approach to it very quickly.

@Johnmac might be able to chime in with his experience, as well. He has recently had success with Freddd's protocol after struggling with the low & slow approach for a while.

HTH a little. Good luck!

 

[Nikki7]

This is a decision that is entirely up to you based on what you think is best for your body, what side effects you can or are willing to tolerate, and what you learn by reading and researching.

We can't tell you what to do here. But I can share my personal experience, which is below. And again, what you decide to do in this situation is entirely up to you. Owning our responsibility in what we do to help our health, even if it's swallowing a pill prescribed to us by a doctor, is a big part of our health.

Anyway, what worked for me is increasing methylfolate in increments, per Freddd's protocol, until my side effects abated to where they were livable and I could coexist with them for an indefinite time. It's a subtle distinction between sides you can live with and discomfort, but the distinction does exist.

Worth noting is I crashed several times while reaching this "stable" high level of methylfolate, and then I crashed a couple more times while maintaining it. But the crashes didn't necessarily mean an increase in daily sides...my crashes were always more like purges or detox and my sides woudl usually get a bit better afterwards. Crashes usually lasted a week or so, but they never felt "malignant", if that makes sense. It was like I had a bad flu but not something that worried me. If I let the crash run its course, it went away.

Also worth noting is I was on much higher doses of methylcobalamin than you are. For the whole first year I was on Freddd's protocol, I injected about 5mg of methylcobalamin per day. In my experience, taking a really high dose of methylfolate requires a very high dose of methylcobalamin to go with it. Other's mileage may vary.

Also had to stop and start LCF and adenosylcobalamin a few times. These are both very potent supplements and can provoke a myriad of symptoms like anxiety, insomnia, etc.

Listening to your body and stopping something for a while if necessary, then maybe circling back around to it with a modified approach, is important. Pushign through or ignoring potentially dangerous symptoms like heart palps or dizziness shouldn't be done. Ever. Stopping and trying to figure out what the problem is and if it can be fixed is crucial.

Pushing through an extremely runny nose, minor muscle aches, a bit of a fever, or even anxiety or short-term insomnia is more of a personal choice. Although personally, I won't push through much insomnia. If it affects my sleep even for just a couple nights I stop it for a while and modify my approach to it very quickly.

@Johnmac might be able to chime in with his experience, as well. He has recently had success with Freddd's protocol after struggling with the low & slow approach for a while.

HTH a little. Good luck!

Thank you @whodathunkit
I appreciate you sharing your experience and agree we have to listen to our bodies. I'm still learning what symptoms mean and how to address them. I think I'll have to go slowly to feel safe, but I do need to titrate up since I'm feeling stuck. I'll start with more methylfolate and see what happens. Thanks so much!

 

[whodathunkit]

@Nikki7: Do you have Freddd's symptom list bookmarked or copied off somewhere? It's posted many times in the sticky threads at the top of the Detox forum, and in many other places as well. If not, let me know and I or @ahmo or someone will give you a link to it. I had to re-read it probably 50 times before I really got it.

 

[Nikki7]

@whodathunkit Thanks...I have them and look back often. I get they are signs of potassium depletion and/or folate deficiency. Mine continue to change and be different ones...not sure what that means exactly, but I do watch for them. Thank you!

 

[sregan]

When I add any adeno (even the tiniest amount) I have a huge added need for more methylofolate.

Why do you believe you need more methylfolate? I assume there is a symptom guiding you?

 

[whodathunkit]

Freddd himself said the list is not exhaustive, just most typical. It depends on the individual.

Freddd hypothesizes there are levels of healing, In order to progress, your "gas tank" of folate must be topped up. If you run out of folate, you get deficiency symptoms.

Additionally, the healing and increased metabolism engendered by taking folate seems to increase the demand for other vitamins and minerals (potassium is a good example). So if you use up your available supply of whatever vitamin and mineral, you might manifest symptoms from that deficiency, plus folate defiicency because the other deficiency stops the whole process. Etc.

It's a dance. Takes a while to learn the steps and even then they can keep changing the rhythm. My own symptoms/sides changed a lot, too, especially in the beginning, as I negotiated my way through various deficiencies and getting enough of the DQ. I went through zinc, B6 (p5p), B2 (FMN), plus some other stuff I can't remember right now. Getting the right levels of the other nutrients helped the whole process.

Incidentally, I got a lot of gastro symptoms. As I got better I seemed to settle into a pattern of limited sides. Mostly epithelial. Runny nose is still a fave.

It seems like the sicker the place you're coming from, the more difficult a time you have. I believe one reason I did so well, and especially in a relatively short time, is because I wasn't seriously ill. Not bedridden. Could still function on a daily basis...sort of, anyway. Etc. The point is, if you're sicker you're probably going to have a harder time than I did starting and then successfully negotiating your way with these supplements. Reading and research can ease the process a lot.

 

[Nikki7]

Why do you believe you need more methylfolate? I assume there is a symptom guiding you?

@sregan I think I need folate due to muscle cramps (I drink and eat and take potassium all day 2000mcg or more). I have major Gastro issues that are worsening. Healing seems to be slow to stopped. I am just fearful to ingest tons of folate at once due to my constant need for potassium as it is. Seems I might overdo it. I wish I knew exactly what amounts of things to take but understand we are all different. Upping my methylfolate today has caused chest pain, muscle aches all over, and I've continued with potassium. Hope to come out of this.

 

[Nikki7]

Freddd himself said the list is not exhaustive, just most typical. It depends on the individual.

Freddd hypothesizes there are levels of healing, In order to progress, your "gas tank" of folate must be topped up. If you run out of folate, you get deficiency symptoms.

Additionally, the healing and increased metabolism engendered by taking folate seems to increase the demand for other vitamins and minerals (potassium is a good example). So if you use up your available supply of whatever vitamin and mineral, you might manifest symptoms from that deficiency, plus folate defiicency because the other deficiency stops the whole process. Etc.

It's a dance. Takes a while to learn the steps and even then they can keep changing the rhythm. My own symptoms/sides changed a lot, too, especially in the beginning, as I negotiated my way through various deficiencies and getting enough of the DQ. I went through zinc, B6 (p5p), B2 (FMN), plus some other stuff I can't remember right now. Getting the right levels of the other nutrients helped the whole process.

Incidentally, I got a lot of gastro symptoms. As I got better I seemed to settle into a pattern of limited sides. Mostly epithelial. Runny nose is still a fave.

It seems like the sicker the place you're coming from, the more difficult a time you have. I believe one reason I did so well, and especially in a relatively short time, is because I wasn't seriously ill. Not bedridden. Could still function on a daily basis...sort of, anyway. Etc. The point is, if you're sicker you're probably going to have a harder time than I did starting and then successfully negotiating your way with these supplements. Reading and research can ease the process a lot.

@whodathunkit
Thanks so much for going into detail! I appreciate it. I currently have major digestive issues and overall muscle pain...also feel frustated with motor skills not being quite right. I've been titrating up on methylfolate (maybe not fast enough), but my body demands so much potassium already. I don't want to overdo it.
I'm sick with chronic fatigue and fibromyalgia/nerve pain and numbness that began this summer. I'd had issues but got suddenly worse. I still go to work because my children need to eat. I just hope and pray for relief. I'm glad you're getting better!
I will be watchful for various supplements and hold to taking them daily and seeing if I can use any extra. I don't seem to react to them so far, but extra bs might be needed.
Thanks again!

 

[sregan]

@sregan I think I need folate due to muscle cramps (I drink and eat and take potassium all day 2000mcg or more). I have major Gastro issues that are worsening. Healing seems to be slow to stopped. I am just fearful to ingest tons of folate at once due to my constant need for potassium as it is. Seems I might overdo it. I wish I knew exactly what amounts of things to take but understand we are all different. Upping my methylfolate today has caused chest pain, muscle aches all over, and I've continued with potassium. Hope to come out of this.

So you are taking the potassium for chest pain? Why are you taking so much potassium?

 

[whodathunkit]

My understanding is that you can take more potassium than that with little to no problem, esp. if you are not building new cells or "using up" potassium by starting methylation. I remember Freddd mentioning going as high as about 4000mcg/day. For whatever that's worth.

I never had to go that high myself, possibly because I had a lot of mineral deficiencies taken care of before I even started methylation. Other mineral deficiencies can play into a need for potassium. I had gotten into iodine therapy a few years before I started methylation, which had in turn helped educate me about the need for magnesium and my probable magnesium deficiency, ditto selenium, and some other things. I had already begun to fix myself before I started methylation. So I never had to go to 4000mcg/day supplemental potassium. But I did experience muscle weakness and fatigue sometimes in the beginning, and I would speculate that between food and supps I was probably getting over 3000mcg/day for a while. Worth noting is I was getting a lot of potassium from food already, as I was drinking quite a bit of of OJ when I started methylation because I was on a Ray Peat spree at the time.

'm sick with chronic fatigue and fibromyalgia/nerve pain and numbness that began this summer. I'd had issues but got suddenly worse.

I'm sorry to hear that. Any ideas why? Did you get a virus or something?

Thinking back over my own history there are a variety of things that helped put me in the tank, but one standout thing was this weird virus I got in about 2000 or so. I was deathly ill for nearly two weeks, high fever, etc., but the weirdest thing was I got this weird electrical-like neuralgic feeling running up and down the front of my thighs and up and down my spine while I was sick. It would come and go, but it was multiple times daily. It took a long time for that neuralgia to go away, months after I had otherwise "recovered". I was never the same after that. That sort of thing seems to be a fairly common thing on PR, where someone will catch a virus and then never recover and instead develop ME/CFS. I did recover for the most part, but again, I was never the same, energy-wise or any other wise. And I deteriorated from there, in increments, with the help of other "environmental insults" sustained over the years.

 

[Nikki7]

So you are taking the potassium for chest pain? Why are you taking so much potassium?

@sregan i am just trying to be sure that the potassium levels are ok. I've required it since starting this. My issues are needing both methylfolate and potassium I believe. I also think potassium via foods and coconut water is safer. I don't take many of the capsules---just 2-300mcg of those each time. I seem to need approx 1000mcg of potassium every time I take my b12 and methylfolate throughout the day. It stops some muscles cramping but definitely not all...why I've decided the rest must be lack of methylfolate.

 

[Lou]

@Nikki7 2000mcg potassium is practically zilch. Do you mean 2000mg?

 

[whodathunkit]

@Nikki7 2000mcg potassium is practically zilch. Do you mean 2000mg?

And, um, yeah...what Lou said. I didn't even notice what I was reading or typing, but yes, that's a crucial distinction.

 

[Nikki7]

My understanding is that you can take more potassium than that with little to no problem, esp. if you are not building new cells or "using up" potassium by starting methylation. I remember Freddd mentioning going as high as about 4000mcg/day. For whatever that's worth.

I never had to go that high myself, possibly because I had a lot of mineral deficiencies taken care of before I even started methylation. Other mineral deficiencies can play into a need for potassium. I had gotten into iodine therapy a few years before I started methylation, which had in turn helped educate me about the need for magnesium and my probable magnesium deficiency, ditto selenium, and some other things. I had already begun to fix myself before I started methylation. So I never had to go to 4000mcg/day supplemental potassium. But I did experience muscle weakness and fatigue sometimes in the beginning, and I would speculate that between food and supps I was probably getting over 3000mcg/day for a while. Worth noting is I was getting a lot of potassium from food already, as I was drinking quite a bit of of OJ when I started methylation because I was on a Ray Peat spree at the time.


I'm sorry to hear that. Any ideas why? Did you get a virus or something?

Thinking back over my own history there are a variety of things that helped put me in the tank, but one standout thing was this weird virus I got in about 2000 or so. I was deathly ill for nearly two weeks, high fever, etc., but the weirdest thing was I got this weird electrical-like neuralgic feeling running up and down the front of my thighs and up and down my spine while I was sick. It would come and go, but it was multiple times daily. It took a long time for that neuralgia to go away, months after I had otherwise "recovered". I was never the same after that. That sort of thing seems to be a fairly common thing on PR, where someone will catch a virus and then never recover and instead develop ME/CFS. I did recover for the most part, but again, I was never the same, energy-wise or any other wise. And I deteriorated from there, with the help of other "environmental insults" sustained over the years.

My understanding is that you can take more potassium than that with little to no problem, esp. if you are not building new cells or "using up" potassium by starting methylation. I remember Freddd mentioning going as high as about 4000mcg/day. For whatever that's worth.

I never had to go that high myself, possibly because I had a lot of mineral deficiencies taken care of before I even started methylation. Other mineral deficiencies can play into a need for potassium. I had gotten into iodine therapy a few years before I started methylation, which had in turn helped educate me about the need for magnesium and my probable magnesium deficiency, ditto selenium, and some other things. I had already begun to fix myself before I started methylation. So I never had to go to 4000mcg/day supplemental potassium. But I did experience muscle weakness and fatigue sometimes in the beginning, and I would speculate that between food and supps I was probably getting over 3000mcg/day for a while. Worth noting is I was getting a lot of potassium from food already, as I was drinking quite a bit of of OJ when I started methylation because I was on a Ray Peat spree at the time.


I'm sorry to hear that. Any ideas why? Did you get a virus or something?

Thinking back over my own history there are a variety of things that helped put me in the tank, but one standout thing was this weird virus I got in about 2000 or so. I was deathly ill for nearly two weeks, high fever, etc., but the weirdest thing was I got this weird electrical-like neuralgic feeling running up and down the front of my thighs and up and down my spine while I was sick. It would come and go, but it was multiple times daily. It took a long time for that neuralgia to go away, months after I had otherwise "recovered". I was never the same after that. That sort of thing seems to be a fairly common thing on PR, where someone will catch a virus and then never recover and instead develop ME/CFS. I did recover for the most part, but again, I was never the same, energy-wise or any other wise. And I deteriorated from there, in increments, with the help of other "environmental insults" sustained over the years.[/QUOTE

@whodathunkit
The virus you caught sounds terrible. I'm glad you've seen improvement. Life throws us some curveballs.
We don't know what happened to me. I've had mono which of course may still cause issues. I have a high stress job that I can't afford to leave. Approx 6 years ago I developed food allergies, then tested positive for candida. Sibo has also come up. Gastro symptoms have been rampant for years. I've had acid reflux and was on nexium for 15 years...told by doctors I'd never be off. I also was diagnosed hypothyroid a few years back, too. I'm now off nexium and have been for six months. I'm determined to find a better way. I believe neixum may have leached b12...it's known to. We just don't know the exact cause of my decline. In the summer chronic pain just became a part of my daily life with a sudden onset...though looking at the last years, it's not surprising something else happened.
I've tried super hard...eating clean foods, using clean, chemical free products, taking lots of herbal remedies, but I just haven't been able to get to the bottom of it. Maybe this is it. I hope so!

 

[Nikki7]

@Nikki7 2000mcg potassium is practically zilch. Do you mean 2000mg?

@Lou
It's mg
Sorry!

 

[whodathunkit]

Jeez, girl, you got a lot of problems to tease out.

Seriously, I was coming from a lot the same place. No chronic pain, but similar to you from what you just said. Digestion problems, acid reflux (although no scrips for that, it just used to happen and I'd take OTC), hypothyroid, etc. I also was depressed for a really long time and bounced off SSRI's a few times. Anti-depressants are another of those insults that helped put me in the tank.

My own personal belief is that if we've got digestive problems, then supplements are necessary. Food can't make up a long-term deficiency, so a clean diet will get some of us only so far, or not very far at all. Other's mileage may vary. I can say for sure that diet alone was not ever sufficient to help me recover my health.

However, I strongly believe diet is the foundation of all health, in that you can't eat crap and expect to be healthy even if you take supplements, and you can't ever be healthy if you eat mostly crap. But even clean food just can't make up the shortfall of a long standing deficiency in the face of malabsorptioin problems. That's a pretty standard fact.

You know about proton-pump inhibitors (e.g., Nexium) and chronic mineral deficiencies, right...?

 

[sregan]

@sregan i am just trying to be sure that the potassium levels are ok. I've required it since starting this. My issues are needing both methylfolate and potassium I believe. I also think potassium via foods and coconut water is safer. I don't take many of the capsules---just 2-300mcg of those each time. I seem to need approx 1000mcg of potassium every time I take my b12 and methylfolate throughout the day. It stops some muscles cramping but definitely not all...why I've decided the rest must be lack of methylfolate.

You might see my blog post on potassium. Muscle cramping sounds like low magnesium to me.

 

[Nikki7]

You might see my blog post on potassium. Muscle cramping sounds like low magnesium to me.

Thanks @sreagan
I take a good bit but may need more. I'll check it out. Thank you!

 

[Nikki7]

Jeez, girl, you got a lot of problems to tease out.

Seriously, I was coming from a lot the same place. No chronic pain, but similar to you from what you just said. Digestion problems, acid reflux (although no scrips for that, it just used to happen and I'd take OTC), hypothyroid, etc. I also was depressed for a really long time and bounced off SSRI's a few times. Anti-depressants are another of those insults that helped put me in the tank.

My own personal belief is that if we've got digestive problems, then supplements are necessary. Food can't make up a long-term deficiency, so a clean diet will get some of us only so far, or not very far at all. Other's mileage may vary. I can say for sure that diet alone was not ever sufficient to help me recover my health.

However, I strongly believe diet is the foundation of all health, in that you can't eat crap and expect to be healthy even if you take supplements, and you can't ever be healthy if you eat mostly crap. But even clean food just can't make up the shortfall of a long standing deficiency in the face of malabsorptioin problems. That's a pretty standard fact.

You know about proton-pump inhibitors (e.g., Nexium) and chronic mineral deficiencies, right...?

@whodathunkit
It is a lot to figure out ---lol! Yes, I'm concerned about mineral deficiency. Do you take a general mineral supplement? Can you recommend any? I take teaspoons of Himalayan or Celtic sea salt for trace minerals. I don't know what exact minerals I lack.
You're right that clean eating isn't enough. I've been the queen of it and am not ok. I'm sad to realize veggies may worsen my folate issues!