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Views on B12--Greg (B12 oils) view vs Rich Van's view--Thoughts?

seamyb

Senior Member
Messages
560
Hope you don't mind me reviving this thread (but it's a good one and I've just finished it).

@Athene* are you still on Fred's protocol? How much progress have you made since this thread?

@Kathevans we've spoken before, but I'd like to know how you are now on Greg's protocol? Any closer to being "cured"?

@Johnmac Has your CFS returned or have you remained in remission? If the latter, have you had to remain on the B12/B2 etc?

Thanks for an interesting conversation, gives me a lot of stuff to look out for.
 

Johnmac

Senior Member
Messages
756
Location
Cambodia
@Johnmac Has your CFS returned or have you remained in remission? If the latter, have you had to remain on the B12/B2 etc?[/QUOTE]

My CFS has remained in remission. Sometimes I get a touch after lots of physical exertion. I haven't kept up the B12 in the last 2 months & nothing has changed - but will resume it if I feel myself declining. My guess is that I'm presently replete.
 

seamyb

Senior Member
Messages
560
@Johnmac Has your CFS returned or have you remained in remission? If the latter, have you had to remain on the B12/B2 etc?

My CFS has remained in remission. Sometimes I get a touch after lots of physical exertion. I haven't kept up the B12 in the last 2 months & nothing has changed - but will resume it if I feel myself declining. My guess is that I'm presently replete.

This gives me a lot of hope!
 

Athene*

Senior Member
Messages
386
Hope you don't mind me reviving this thread (but it's a good one and I've just finished it).

@Athene* are you still on Fred's protocol? How much progress have you made since this thread?

I was one of the most disabled ones trying Fred's protocol when I began it around 2014, more consistently from 2015. I had got to the stage of considering which wheelchair to buy because I kept having sudden flaccid muscle attacks where I would sink to the ground and be completely paralysed for several minutes at a time.
Breathlessness and profound weakness kept me bedridden after that, not to mention the torture of nerve pain, muscle pain, excoriated skin, skin infections, UTIs, sciatica, tinnitus, hearing loss, vicious heartburn, IBS, word forgetting making conversation difficult etc. etc. etc...Too weak to lift head from pillow. Needed help with self care.

It's been extremely slow but I'm now up and about every day doing usual things around the house, cooking, cleaning etc. I also work from laptop for several hours and go for a walk most days, still fairly short at the moment - 20 minutes, but hoping to increase that.

I'm also using kettle weights to slowly build muscle strength and the other day I lifted a huge heavy mirror on to a fixing above my head on a wall. Doesn't sound like a big deal but I was absolutely thrilled.

I've been hobbled along the way by a vitamin D issue- it's my 'limiting factor' as Fred would call it. Every time I took even a tiny amount of D3 it would cause immediate deficiency symptoms of folate and potassium, causing a dreadful crash.
The only way I could take vitamin D was by using a Sperti lamp which has brought my level up to 110 nmol/L and allowed me to progress in leaps and bounds in terms of energy.
After high dose boron things improved so I can now use a tiny amount of D3. I mainly use the Sperti lamp and sunbathing in summer gives me huge energy. I have equally huge magnesium need! I take a lot and use magnesium chloride spray too.

I'm hoping that lithium orotate will help balance minerals, as Fred has found. It's already allowed me to hold on to my b12 injections for longer.

I needed six months of 15-20mg copper after I got everything working last summer. Now on 6mg daily.

Still on 10mg x 3 Mecbl injections daily plus 50mg methylfolate alternating with Quatrefolic every couple of months. Carnitines need alternating too.

It's massively expensive, mentally tough - multiple setbacks can reduce you to a physical and mental wreck who doesn't want to wake up to another day, but the gains do give you hope and resilience.

As far as I know from @Freddd it's now a deadlock 'quintet' (including lithium now) rather than 'quartet' so that might allow a you a faster recovery if you decide to go down this route. Luckily I began titrating lithium almost 3 yrs ago, but if I'd known about it I would have taken it from the start.

I wouldn't have known how to do any of this without Fred's shared experience.

So far so good...

PS I tried the b12 oils but got nothing from them. I'm one of those that need injectable MeCbl and masses of it. Am really hoping the lithium improves that further.
 
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seamyb

Senior Member
Messages
560
@seamyb Something went wrong there but I think you can still see my response

I can indeed, bloody quote delimiters!

That's quite a story. I've never been as bad as you have, and I thought my illness was catastrophically severe! I'm so glad you're in upward motion.

I'm waiting on Greg's oils to come in the post for the first time. Waiting and hoping. I'm currently mild, having brought myself from the severe end of moderate with oral B12 alone. I've hope that Greg's ideas will fix me. It certainly seems an easier way to go than Fred's (with absolutely no disrespect intended).

It isn't one disease we have. And even those with seemingly similar versions of it are quite dissimilar. Maybe this is why modern medicine can't be bothered.
 
Messages
70
@seamyb Good luck with the oils!

Since you revived the thread I thought I'd jump in with my own experience with them. I went from moderate to extremely mild ME/CFS through mold avoidance and treating MCAS. Almost two years ago I went into remission after starting methylB12 injections.

I was elated but I still had to be very careful about environmental triggers and I had to take the shots every few days or I would start getting neurological symptoms and mild PEM again. Once I started working a full time, high energy job it became a huge hassle because if there was any delay in my monthly delivery of shots, it could become an issue.

I tried Greg's protocol while doing shots instead of oils to see if I could become less dependent on the shots. A couple of months into the protocol, I was able to start spacing out my shots and taking them less often. Over time I moved from shots 3x/week to about 1x/month. Of course it's also possible that it was just the shots replenishing my B12 levels and this would have happened without the protocol.

The protocol also gave me more sustained energy and over time my reaction to environmental triggers was reduced (zinc was the big difference there). About a month ago I switched to using the oils so I could take methylfolate at the same time as B12. It has been great and it has reduced my environmental sensitivities to the level they were at when I was in college.
 

seamyb

Senior Member
Messages
560
@seamyb Good luck with the oils!

Since you revived the thread I thought I'd jump in with my own experience with them. I went from moderate to extremely mild ME/CFS through mold avoidance and treating MCAS. Almost two years ago I went into remission after starting methylB12 injections.

I was elated but I still had to be very careful about environmental triggers and I had to take the shots every few days or I would start getting neurological symptoms and mild PEM again. Once I started working a full time, high energy job it became a huge hassle because if there was any delay in my monthly delivery of shots, it could become an issue.

I tried Greg's protocol while doing shots instead of oils to see if I could become less dependent on the shots. A couple of months into the protocol, I was able to start spacing out my shots and taking them less often. Over time I moved from shots 3x/week to about 1x/month. Of course it's also possible that it was just the shots replenishing my B12 levels and this would have happened without the protocol.

The protocol also gave me more sustained energy and over time my reaction to environmental triggers was reduced (zinc was the big difference there). About a month ago I switched to using the oils so I could take methylfolate at the same time as B12. It has been great and it has reduced my environmental sensitivities to the level they were at when I was in college.

Well I'm glad you jumped in there, because if I could "like" that comment a thousand times I would. Amazing stuff.

I don't think MCAS has anything to do with my symptoms. But I'm always wondering whether there is something in the environment causing them. My fiance isn't very well either - she doesn't have CFS but has chronic fatigue and terrible ovulation issues. I might become a part-time b12 salesman and try to get her to investigate methylation too... Can't hurt, hopefully... and if it does, niacin!

Seriously, I'm trying to stifle the hope this has given me. It may not be as great for me as it has been for you, but I think from the effects I've seen so far, I should at least let some of the hope into the bloodstream.

Thanks very much for jumping in!!
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
@Athene* @Johnmac @seamyb
I've always understood Fredd's Refeeding concept, actually 'felt' it as a physiological response to a much-needed supplement. That is, if you don't have a reaction to something, then it is likely something that you don't need--at least as much or as critically. Copper I seemed to need early on, but then adding more didn't do anything and I stopped. Now when I raise of lower it by a mg, I notice nothing, and therefore feel it doesn't matter (at least not critically). With lithium I never noticed a thing and I have read over Fred's recent revelations in its regard. I do have the TCN gene and so I do take this seriously. But when I took even the 5 mg, I never felt a thing, nor did I feel anything when I stopped. This even though after taking it for a couple of months, a hair analysis showed my levels were sky high. Have you had refeeding symptoms taking it? Have they begun to wane as you titrate up?

These experiences are very different from the wild refeeding symptoms I've gotten from not enough B-12(most often Adenosyl), or not enough folate, or not enough boron, selenium, molybdenum. These symptoms tend to start with a heart flutter, and lead into palpitations, worsening ibs, etc. Perhaps given my MAO status, and certainly because I've tested low on B2 ever since I took my first OAT test back in 2014--I think it was--I always thought B2 was part of my greatest need area. I really struggled to understand and incorporate Greg's perspective which is basically this: he says that 100% of those he works with who have fibromyalgia/ME/chronic fatigue are B-12 deficient, and 80% of those are B2 deficient. The issue becomes one then, of whether the B2 is 'active', which means that your thyroid must have enough iodide to keep the TSH somewhere between .5 and 1.5 (mine had been climbing over the past decade and no mainstream doctor thought there was anything wrong there), enough selenite to convert the T4 to T3 and then you must have enough molybdate to activate the FMN to FAD (or something very close to all this!) Because of my very strong reactions to Molybdenum (which began several years ago) and more recently last year to selenite, and most recently to iodide just since last November, I can see that, with me, at least, Greg seems to have hit the nail on the head. I am still making progress.

The stumbling blocks have been Greg's own awareness of how important it is to get the correct forms of these minerals, then--especially with people like me with a very compromised gut--to take them on an empty stomach and not with citric acid (think lemon juice, which I did for years!). So it has been a long and winding road. And, frankly, a nightmare, more nights up with heart issues trying for the supplement that my body wanted MOST at any particular time, never achieving any sort of balance at all...until..well...maybe...maybe.

For the first time ever my body has stopped or slowed in its demand for folate and I can see how much works and the point where I don't need any more. This has never happened before. And I've titrated up as high as 40-briefly 60mg of folate, searching for that level. There's more, of course, I think it was JohnMac who said that B-12 deficiency and mercury toxicity were two sides of the same coin, and he has been a great guide for me. My dental work--and my first nitrous oxide--occurred when I was only five years old and I know that I then suffered from ADHD. My kindergarden teacher was concerned about whether I could continue into the first grade. On my report card she wrote: "Kathy needs to SETTLE DOWN!!!!!!"

So even as I begin to balance out on the most recent, and seemingly more effective form of iodide which I switched to last November (my body does not shift easily or fast), I am also on my 80th round of chelation (I had all amalgam removed a few years ago now) at 33mg ALA.

My biggest challenges are sleep -and the heart irregularities that often disturb it; fatigue, of course; and muscular weakness/loss, mostly in my arms and even more particularly in my left arm. The arm had actually bothered me from my 20s (possibly after the nitrous oxide I had for my wisdom teeth removal) and gotten worse over the past five years when all my symptoms--related to methylation--worsened. It had gotten so bad lately that I feared I would lose the use of it. But in the last couple of months, it feels that my body has been able to utilize the folate I do take. If I take enough my the arm is weak but I am not in much pain; too little and it's hard to dress myself or put a coat on. I've been wondering if there is a mercury/thimerasol connection as I had immunotherapy for allergies, two shots in my left arm and one in my right--for 10-15 years--if you can believe it, in solidarity with my son who had more serious allergies to nuts and stuff.

So much to wonder about. I do see that Greg's approach works for me. As does Fred's. And for me the oils are sufficient--two squirts of Adenosyl/Methyl and one of plain Methyl. I tried the shots for about six months or so, but the oil worked just as well and provided the Adenosyl which I really seem to need. And the oils are much cheaper than the injections.

Did I answer the questions? I hope so. It's late and I'm a bit frazzled, but so nice to join in.

Take care all...
 
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Athene*

Senior Member
Messages
386
I can indeed, bloody quote delimiters!

That's quite a story. I've never been as bad as you have, and I thought my illness was catastrophically severe! I'm so glad you're in upward motion.

I'm waiting on Greg's oils to come in the post for the first time. Waiting and hoping. I'm currently mild, having brought myself from the severe end of moderate with oral B12 alone. I've hope that Greg's ideas will fix me. It certainly seems an easier way to go than Fred's (with absolutely no disrespect intended).

It isn't one disease we have. And even those with seemingly similar versions of it are quite dissimilar. Maybe this is why modern medicine can't be bothered.
Best of luck. I really wanted the oils to work - so much easier than injections. My husband had a relatively mild b12 deficiency (though rapidly getting worse) and he was absolutely fine on what, for me, would be a tiny dose of b12. I'm sure you'll be fine.
 

Athene*

Senior Member
Messages
386
@Athene* @Johnmac @seamyb
I've always understood Fredd's Refeeding concept, actually 'felt' it as a physiological response to a much-needed supplement. That is, if you don't have a reaction to something, then it is likely something that you don't need--at least as much or as critically. Copper I seemed to need early on, but then adding more didn't do anything and I stopped. Now when I raise of lower it by a mg, I notice nothing, and therefore feel it doesn't matter (at least not critically). With lithium I never noticed a thing and I have read over Fred's recent revelations in its regard. I do have the TCN gene and so I do take this seriously. But when I took even the 5 mg, I never felt a thing, nor did I feel anything when I stopped. This even though after taking it for a couple of months, a hair analysis showed my levels were sky high. Have you had refeeding symptoms taking it? Have they begun to wane as you titrate up?

These experiences are very different from the wild refeeding symptoms I've gotten from not enough B-12(most often Adenosyl), or not enough folate, or not enough boron, selenium, molybdenum. These symptoms tend to start with a heart flutter, and lead into palpitations, worsening ibs, etc. Perhaps given my MAO status, and certainly because I've tested low on B2 ever since I took my first OAT test back in 2014--I think it was--I always thought B2 was part of my greatest need area. I really struggled to understand and incorporate Greg's perspective which is basically this: he says that 100% or those he works with who have fibromyalgia/ME/chronic fatigue are B-12 deficient, and 80% of those are B2 deficient. The issue becomes one then, of whether the B2 is 'active', which means that your thyroid must have enough iodide to keep the TSH somewhere between .5 and 1.5 (mine had been climbing over the past decade and no mainstream doctor thought there was anything wrong there), enough selenite to convert the T4 to T3 and then you must have enough molybdate to activate the FMN to FAD (or something very close to all this!) Because of my very strong reactions to Molybdenum (which began several years ago) and more recently last year to selenite, and most recently to iodide just since last November, I can see that, with me, at least, Greg seems to have hit the nail on the head. I am still making progress.

The stumbling blocks have been Greg's own awareness of how important it is to get the correct forms of these minerals, then--especially with people like me with a very compromised gut--to take them on an empty stomach and not with citric acid (think lemon juice, which I did for years!). So it has been a long and winding road. And, frankly, a nightmare, more nights up with heart issues trying for the supplement that my body wanted MOST at any particular time, never achieving any sort of balance at all...untill..well...maybe...maybe.

For the first time ever my body has stopped or slowed in its demand for folate and I can see how much works and the point where I don't need any more. This has never happened before. And I've titrated up as high as 40-briefly 60mg of folate, searching for that level. There's more, of course, I think it was JohnMac who said that B-12 deficiency and mercury toxicity were two sides of the same coin, and he has been a great guide for me. My dental work--and my first nitrous oxide--occurred when I was only five years old and I know that I then suffered from ADHD. My kindergarden teacher was concerned about whether I could continue into the first grade. On my report card she wrote: "Kathy needs to SETTLE DOWN!!!!!!"

So even as I begin to balance out on the most recent, and seemingly more effective form of iodide which I switched to last November (my body does not shift easily or fast), I am also on my 80th round of chelation (I had all amalgam removed a few years ago now) at 33mg ALA.

My biggest challenges are sleep -and the heart irregularities that often disturb it; fatigue, of course; and muscular weakness/loss, mostly in my arms and even more particularly in my left arm. The arm had actually bothered me from my 20s (possibly after the nitrous oxide I had for my wisdom teeth removal) and gotten worse over the past five years when all my symptoms--related to methylation--worsened. It had gotten so bad lately that I feared I would lose the use of it. But in the last couple of months, it feels that my body has been able to utilize the folate I do take. If I take enough my the arm is weak but I am not in much pain; too little and it's hard to dress myself or put a coat on. I've been wondering if there is a mercury/thimerasol connection as I had immunotherapy for allergies, two shots in my left arm and one in my right--for 10-15 years--if you can believe it, in solidarity with my son who had more serious allergies to nuts and stuff.

So much to wonder about. I do see that Greg's approach works for me. As does Fred's. And for me the oils are sufficient--two squirts of Adenosyl/Methyl and one of plain Methyl. I tried the shots for about six months or so, but the oil worked just as well and provided the Adenosyl which I really seem to need. And the oils are much cheaper than the injections.

Did I answer the questions? I hope so. It's late and I'm a bit frazzled, but so nice to join in.

Take care all...
Kath, to answer re lithium- the main thing I noticed was insomnia after I took it. That improved when I moved it away from near bedtime. I now sleep 6.5 hours unbroken which is a big achievement for me and improved hugely with copper. My holy grail is 8 hours but 7.5 would do!
I did need a bit more potassium too, with lithium addition, but that's settled now, though I do still need a lot of potassium - 4g daily. At one point I had to have 6g or I would have sweats and palpitations. That doesn't happen now.
 
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Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Kath, to answer re lithium- the main thing I noticed was insomnia after I took it. That improved when I moved it away from near bedtime. I now sleep 6.5 hours unbroken which is a big achievement for me and improved hugely with copper. My holy grail is 8 hours but 7.5 would do!
I did need a bit more potassium too, with lithium addition, but that's settled now, though I do still need a lot of potassium - 4g daily. At one point I had to have 6g or I would have sweats and palpitations. That doesn't happen now.

Insomnia, of course. When I first took Molybdate, I couldn’t sleep at all. Now I take 600mcg/day and notice nothing.

I think to achieve unbroken sleep I will have to put a dent in the serious B2 deficiency I have. Maybe that will begin to happen now with the correct cofactors on board. Last night I set aside the last of the 50mg B2 caps I’d prepared, then proceeded to forget to add it back into my bedtime stack. I woke twice after an hour of sleep before my heart began to pound, but it didn’t occur to me that I’d forgotten it and I sat up for hours trying potassium and niacin to alleviate my symptoms. You can imagine my dismay when I popped a 25mg B2–just in case—and my heart beat resolved in three minutes. Ugh! How often I shoot myself in the foot.

This is what happens when I lose my focus... but I do have hope now. I just need to be vigilant.

Fingers crossed!

Twice recently I slept 8 very broken hours, and felt so accomplished! I couldn’t recall that happening for years. I usually get by on 5-6 broken hours and supplement with an afternoon nap...
 
Messages
83
Greg advises that the active form is 'clipped back' to the normal form in the gut and that the active forms are a 'rip off' so I was happy to believe him and save a few euros!

Going through lots and lots of data, the common thread to many people's problems is low or inactive vitamin B2/riboflavin. Riboflavin is converted to FMN and FAD, which are essential co-factors in many, many enzyme reactions. The relevance for methylation is huge, thus MTHFR, MTRR and Thymidine synthase, all require FAD, so just to get proper folate cycling and methylation need FAD. We know that methylation is a key factor for CFS, etc.
???
 
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Messages
83
Sorry, I see the mod has edited my quote and it doesn't make clear that I was quoting what I thought to be two different takes from Greg;

-advocating for the activated form of B2: https://forums.phoenixrising.me/thr...ar-dose-to-b12-injections.75317/#post-2184280

-and dismissing it like in the first quote.

On a second look tho I think he seems to be stressing the assimilation of the activated form via cofactors and not via a direct activated form (R5P), am I getting this right?
I'm sorry if this has been cleared, to be honest I'm currently at page 10 of this thread (2016...)

MODERATOR'S NOTE: I restored the post immediately above to how it was originally, it was edited in error -
 
Last edited by a moderator:

Athene*

Senior Member
Messages
386
On a second look tho I think he seems to be stressing the assimilation of the activated form via cofactors and not via a direct activated form (R5P), am I getting this right?
I'm sorry if this has been cleared, to be honest I'm currently at page 10 of this thread (2016...)

Yes, that's what he's saying as I understand it.

In my own case I tried both forms of b2 and while I thought it was helping (both forms at different times), it may have been more likely to do with an increase in thyroid hormone (T3) I was taking.

In the end I cut the extra b2 supplement out to see if Fred's method would work i.e. only take the small amount, 10.2mg, that's in the low-dose bcomplex.

My health has been slowly but steadily improving since I switched to Fred's method but it's been tough with multiple setbacks. I was left for decades with low folate and b12, and hypothyroidism, misdiagnosed as 'ME' and 'Fibromyalgia' and needed huge doses of everything, b12 via injection several times daily.

I should say I've also had to considerably increase thyroid hormone too. No amount of any iodine, roboflavin, etc helped my thyroid function. I have no thyroid antibodies and never had so did low b12 & folate affect thyroid function? I'm not sure. Fred has written on the forum somewhere that he is hypothyroid too and has taken various forms of thyroid hormone over the years.

Optimal thyroid function is dependent on many minerals, vitamins being replete, but sometimes we have to go down the blood tests & hormone replacement route as well. I have found it extremely challenging to get everything in balance and you can't micromanage thyroid meds without getting the minerals balanced. Sorry if I've repeated. The phone screen is jumping around.

For me, adenosylcobalamin needed to be replete too for mitochondria to function. That's in Greg's b12 oils too but I needed tiny doses, very gradually titrated. The high dose of AdoCbl in the oils (around 2015, when I tried the oils) knocked me out completely.

Some people have obviously done well on the oils. I wonder if one is mildly or moderately debilitated would they help as opposed to somebody near death, as I was? I'd be interested to hear from somebody at that level who got better using the oils, or is even maintained on the oils. They'd be a lot more pleasant than injections. But for me, I don't want to risk it at this stage.
 

seamyb

Senior Member
Messages
560
Yes, that's what he's saying as I understand it.

In my own case I tried both forms of b2 and while I thought it was helping (both forms at different times), it may have been more likely to do with an increase in thyroid hormone (T3) I was taking.

In the end I cut the extra b2 supplement out to see if Fred's method would work i.e. only take the small amount, 10.2mg, that's in the low-dose bcomplex.

My health has been slowly but steadily improving since I switched to Fred's method but it's been tough with multiple setbacks. I was left for decades with low folate and b12, and hypothyroidism, misdiagnosed as 'ME' and 'Fibromyalgia' and needed huge doses of everything, b12 via injection several times daily.

I should say I've also had to considerably increase thyroid hormone too. No amount of any iodine, roboflavin, etc helped my thyroid function. I have no thyroid antibodies and never had so did low b12 & folate affect thyroid function? I'm not sure. Fred has written on the forum somewhere that he is hypothyroid too and has taken various forms of thyroid hormone over the years.

Optimal thyroid function is dependent on many minerals, vitamins being replete, but sometimes we have to go down the blood tests & hormone replacement route as well. I have found it extremely challenging to get everything in balance and you can't micromanage thyroid meds without getting the minerals balanced. Sorry if I've repeated. The phone screen is jumping around.

For me, adenosylcobalamin needed to be replete too for mitochondria to function. That's in Greg's b12 oils too but I needed tiny doses, very gradually titrated. The high dose of AdoCbl in the oils (around 2015, when I tried the oils) knocked me out completely.

Some people have obviously done well on the oils. I wonder if one is mildly or moderately debilitated would they help as opposed to somebody near death, as I was? I'd be interested to hear from somebody at that level who got better using the oils, or is even maintained on the oils. They'd be a lot more pleasant than injections. But for me, I don't want to risk it at this stage.

Having been on Greg's oils for about three days I can say that it's knocking me out too. I've had increased fatigue, weird and horrible spinal/back pain and heart rate has gone very high.

However, I'm only taking a fraction of a squirt. I put it in an opaque tub, dip my finger in every day and rub it into my skin. I'm going to keep at it because I'm a masochist and have been a very naughty boy Greg says there can be startup effects (why does everything have startup effects?!).

I'm baffled as to how oral methylfolate can improve my condition but the oil can worsen it. Either it's Greg's theory playing out and I've never had B12 anywhere near this quantity, or it's the adenosyl.

Interestingly, I read a paper that says that all forms of cobalamin are stripped of their methyl/adenosyl/hydroxyl groups in the cytosol and these are added back later when needed, although it's not the same molecule that was taken off that gets added back. Kind of goes against a lot of my thinking.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
why does everything have startup effects?!

It's so annoying, isn't it! :bang-head: There are some people who say that if something is going to work for you, it will work immediately. Unfortunately, that hasn't been my personal experience. All the things that have provided me with lasting benefits initially came with nasty startup effects- for me, personally.

Interestingly, I read a paper that says that all forms of cobalamin are stripped of their methyl/adenosyl/hydroxyl groups in the cytosol and these are added back later when needed, although it's not the same molecule that was taken off that gets added back.

Quite true:
[1] https://pubmed.ncbi.nlm.nih.gov/23539619/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5312744/
 

seamyb

Senior Member
Messages
560
It's so annoying, isn't it! :bang-head: There are some people who say that if something is going to work for you, it will work immediately. Unfortunately, that hasn't been my personal experience. All the things that have provided me with lasting benefits initially came with nasty startup effects- for me, personally.



Quite true:
[1] https://pubmed.ncbi.nlm.nih.gov/23539619/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5312744/

At least it makes sense - we've clearly found some homeostasis which keeps us alive but unwell. Upsetting any homeostasis should cause a worsening of the condition.

As for the cobalamin losing its groups when entering the cell, what benefit is there of taking both methyl and adenosyl forms? Does it perhaps maintain the availability of the two groups within the cell? I'd imagine there is some difference between taking the two forms, as many notice different effects from the two.
 

seamyb

Senior Member
Messages
560
Also, @Pyrrhus, would you say you're cured? Or at least can maintain symptoms at a level which means you are more like a normal human being than a PWME?