whodathunkit
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...of the Emergency Broadcast System...?
B-12 - The Hidden Story
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Freddd
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MAYBE. The experience of many is that if the B12 system is really broken in a person that it doesn't appear to recover. Some people are not damaged in the same way. Just remember that by age 50 many people are becoming b12 deficient that were not before. The things that cause my shortage have some to do with genetics, I can't change that. Some have problems initially that can be corrected. I wouldn't try going off until 5 years after everything I appears healed, and then maybe back the doses down slowly checking back with larger doses every now and then to see if you have startup over again. If so, decreasing isn't going to work.
Leopardtail
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nope on 'the internet devloped ME" system...
whodathunkit
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@Leopardtail :
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Hello, all!
Question...
I've had CFS for 10 years and started on the methylB12 protocol about 6 weeks ago. I have a low serum B12 (270 pg/mL), and chronically low serum Vitamin D and somewhat low ferritin. Low-normal T4 and T3, low normal TSH. (TSH should be inverse of the T3/T4, but my pituitary likely isn't doing its job.) Dominant symptoms are fatigue and brain fog.
I'm up to the following:
Split into 2 doses, each dissolved buccally over 1.5-2 hours:
4000 mcg methylB12 (Solgar)
800 mcg metafolin (Solgar)
4000 mcg adB12 (Source Naturals)
Ingested:
Vitamins A, C
Potassium
Calcium
Magnesium
Zinc
Fish oil (Carlson) - 4 caps/day
Turmeric - 2 tabs/day
Vitamin D - 4000 IU/day
Both T3 and T4 (taken far away from the calcium)
Notes:
Initial startup reaction from a tiny amount of mB12 and folate was mania, euphoria, and high energy. This subsided after 3 weeks, and now I'm back to the CFS blahs. Lots of wild new symptoms that eventually subsided, but no change in the original brain fog. No noticeable response to the introduction of adB12. The most consistent improvement so far is that my wacky sleep has become regulated. I actually get tired in the evening now (natural melatonin?) and wake more refreshed. My PEM has also decreased somewhat.
So here's the problem.
Whenever I add in a B-complex, it's as if I'm not taking the mB12 and folate at all. My sleep becomes dysregulated again, with me staying up until odd hours of the night. It also becomes nonrestorative again, leaving me dragging all day. PEM comes back full-force.
I've tried Klaire labs multivitamins, which contain no cyanoB12 or folic acid, just active forms of B vitamins including P-5-P. I've also tried Pure Encapsulationis B-Complex Plus, just half a capsule per day. Both of them, same reaction. The reaction goes away a few days after I stop the B vitamins.
1. How do you tell if a reaction is a healing reaction or an interfering reaction? This feels like interfering, but how can I be sure?
2. Could this reaction be to the niacin blocking methylation? Should I try adding a truckload more metafolin to see if it circumvents this? Or should I take separate B-vitamins to try to isolate what is problematic?
Thank you, all of you, for your help. I wanted to read the entire thread before asking anything, but I've only made it halfway. Hopefully this isn't a repeat question!
Blue
Question...
I've had CFS for 10 years and started on the methylB12 protocol about 6 weeks ago. I have a low serum B12 (270 pg/mL), and chronically low serum Vitamin D and somewhat low ferritin. Low-normal T4 and T3, low normal TSH. (TSH should be inverse of the T3/T4, but my pituitary likely isn't doing its job.) Dominant symptoms are fatigue and brain fog.
I'm up to the following:
Split into 2 doses, each dissolved buccally over 1.5-2 hours:
4000 mcg methylB12 (Solgar)
800 mcg metafolin (Solgar)
4000 mcg adB12 (Source Naturals)
Ingested:
Vitamins A, C
Potassium
Calcium
Magnesium
Zinc
Fish oil (Carlson) - 4 caps/day
Turmeric - 2 tabs/day
Vitamin D - 4000 IU/day
Both T3 and T4 (taken far away from the calcium)
Notes:
- I use Solgar mB12 because the Enzymatic Therapy brand caused irritation. IMHO Solgar is maybe a 4 to ET's 5.
- Currently out of vitamin E, so not taking it. (Whoops.)
- Not yet stabilized symptomatically.
- Haven't tried adding l-carnitine fumarate, SAM-e, or TMG.
Initial startup reaction from a tiny amount of mB12 and folate was mania, euphoria, and high energy. This subsided after 3 weeks, and now I'm back to the CFS blahs. Lots of wild new symptoms that eventually subsided, but no change in the original brain fog. No noticeable response to the introduction of adB12. The most consistent improvement so far is that my wacky sleep has become regulated. I actually get tired in the evening now (natural melatonin?) and wake more refreshed. My PEM has also decreased somewhat.
So here's the problem.
Whenever I add in a B-complex, it's as if I'm not taking the mB12 and folate at all. My sleep becomes dysregulated again, with me staying up until odd hours of the night. It also becomes nonrestorative again, leaving me dragging all day. PEM comes back full-force.
I've tried Klaire labs multivitamins, which contain no cyanoB12 or folic acid, just active forms of B vitamins including P-5-P. I've also tried Pure Encapsulationis B-Complex Plus, just half a capsule per day. Both of them, same reaction. The reaction goes away a few days after I stop the B vitamins.
1. How do you tell if a reaction is a healing reaction or an interfering reaction? This feels like interfering, but how can I be sure?
2. Could this reaction be to the niacin blocking methylation? Should I try adding a truckload more metafolin to see if it circumvents this? Or should I take separate B-vitamins to try to isolate what is problematic?
Thank you, all of you, for your help. I wanted to read the entire thread before asking anything, but I've only made it halfway. Hopefully this isn't a repeat question!
Blue
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whodathunkit
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@BluebirdFeather: It can be difficult to tell if a reaction is a healing reaction or a problem. Experience and research are the best guide. Try to find out everything you can about the supplement you're taking that you think might be causing the problem. And use previous experience with other supplements to help guide you through experience with a new supplements.
Also worth remembering is that physical symptoms (headache, runny nose, nausea, etc.) are frequently more indicative of a healing crisis than psychological/nervous system symptoms. Not always, especially not with mB12, but just as a very general rule of thumb.
One thing I do is I try to "let it ride" (it being my adverse symptoms) for as long as I can. Typically, in a healing crisis, the bad symptoms will begin to ameliorate within 2-5 days when you keep doing what you're doing, or even increase dosage. Minerals being the exception. Overdosing on minerals can be serious so be careful with those. But with vitamins and amino acids, etc., there isn't too much danger of having a really serious reaction. You might feel bad but unlikely to really hurt yourself.
Of course there's some danger with everything, depending upon personal factors, so I hope no one will take these words out of context to mean there's no danger at all with supplements. That's not what I mean. Above all we should always use common sense and do only what we're comfortable with. While at the same time remembering that sometimes to progress we must step out of our comfort zone. Hope that makes sense.
Anyway, if things don't at least begin to get somewhat better within five days, I start thinking "problem" instead of "healing". It depends upon the severity of the sides as to whether or not I continue past day five if there's no improvement by then. If I go seven days with no improvement I definitely stop or step down dose.
Sometimes it's not possible to "power through" adverse symptoms 3 - 5 days...either the symptoms are intolerable or the person too nervous about continuing. Sometimes you have to back off until you've done more research or have more experience. That's okay.
When starting these supplements we use around here, I had really great results following Freddd's advice an increasing methylfolate to deal with adverse symptoms. I found his advice spot-on. But there are differing opinions on that. Severity of side effects and individual tolerance for adverse sides can play into success when following Freddd's advice, too.
I did have to go gentle with the l-carnitine fumarate (LCF) at first, as I found that very potent. But now I'm up to the max known effective dose (1000mg/day) and loving it.
I would think it's niacin that's causing your problems with B complex. Personally I can't take niacin in any form...it brings things to a screeching halt. It makes me feel like crap. I take supplemental B vitamins separately, as I can't find a B complex without any form of niacin at all.
Hope that helps a little. Good luck!
Also worth remembering is that physical symptoms (headache, runny nose, nausea, etc.) are frequently more indicative of a healing crisis than psychological/nervous system symptoms. Not always, especially not with mB12, but just as a very general rule of thumb.
One thing I do is I try to "let it ride" (it being my adverse symptoms) for as long as I can. Typically, in a healing crisis, the bad symptoms will begin to ameliorate within 2-5 days when you keep doing what you're doing, or even increase dosage. Minerals being the exception. Overdosing on minerals can be serious so be careful with those. But with vitamins and amino acids, etc., there isn't too much danger of having a really serious reaction. You might feel bad but unlikely to really hurt yourself.
Of course there's some danger with everything, depending upon personal factors, so I hope no one will take these words out of context to mean there's no danger at all with supplements. That's not what I mean. Above all we should always use common sense and do only what we're comfortable with. While at the same time remembering that sometimes to progress we must step out of our comfort zone. Hope that makes sense.
Anyway, if things don't at least begin to get somewhat better within five days, I start thinking "problem" instead of "healing". It depends upon the severity of the sides as to whether or not I continue past day five if there's no improvement by then. If I go seven days with no improvement I definitely stop or step down dose.
Sometimes it's not possible to "power through" adverse symptoms 3 - 5 days...either the symptoms are intolerable or the person too nervous about continuing. Sometimes you have to back off until you've done more research or have more experience. That's okay.
When starting these supplements we use around here, I had really great results following Freddd's advice an increasing methylfolate to deal with adverse symptoms. I found his advice spot-on. But there are differing opinions on that. Severity of side effects and individual tolerance for adverse sides can play into success when following Freddd's advice, too.
I did have to go gentle with the l-carnitine fumarate (LCF) at first, as I found that very potent. But now I'm up to the max known effective dose (1000mg/day) and loving it.
I would think it's niacin that's causing your problems with B complex. Personally I can't take niacin in any form...it brings things to a screeching halt. It makes me feel like crap. I take supplemental B vitamins separately, as I can't find a B complex without any form of niacin at all.
Hope that helps a little. Good luck!
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@BluebirdFeather great, detailed notes on your supplements, symptoms and issues - very useful!
@whodathunkit great info on differentiating healing from adverse symptoms. most helpful!
@whodathunkit great info on differentiating healing from adverse symptoms. most helpful!
whodathunkit
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@Sherpa, thanks!
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@whodathunkit, thank you for the advice! I've decided on reintroducing the B-vites individually, saving niacin for last.
I did increase metafolin a week ago but suspect overmethylation. Overheating, agitation, insomnia, and anger, still going strong after a week.
I did increase metafolin a week ago but suspect overmethylation. Overheating, agitation, insomnia, and anger, still going strong after a week.
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Question: I know Country Life is the preferred B12 for methyl12 and also the Enzymatic Therapy. Is there another one that Freddd recommends now as well? Reason being is that Country Life has 'dextrin' which is an excitotoxin and I can't touch excitatory things let alone excitotoxins! I did try it regardless - and can't do it. Can do the Enzymatic but it is pretty low dose. I just found a liposomal product by Seeking Health that looks promising - but the risk is that it is not effective and I wouldn't know either way. I have been taking the Jarrow that used to be recommended and can do it, but no sense in using it if it isn't being effective. Did notice a huge difference in taking the Anabol Naturals AD12 & Jarrow MB12 - but that could just be the AD12??
I also got Jarrow 1000mcg lemon mB12 lozenges and it seems effective to me. I found it had comparable effect to Enzy mB12. It is, however, very acid and has cirtic acid which dentists say is the the very worst for tooth enamel.
ahmo
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@aturtles I think you've answered our private B12 questions conversation on the public B12 thread.
aturtles
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@ahmo I accidentally posted a private message here, now deleted. My apologies.
A quick intro: I've been on the Deadlock Quartet and Freddd Protocol, high-dose L-MTHF & B12s, since 8/20. I've started a thread to talk about brands and doses for the Freddd Protocol, where I'll address your recent comment, @Sherpa.
A quick intro: I've been on the Deadlock Quartet and Freddd Protocol, high-dose L-MTHF & B12s, since 8/20. I've started a thread to talk about brands and doses for the Freddd Protocol, where I'll address your recent comment, @Sherpa.
Hi!...
My question is about the liver storage.
I realized that when I take sublinguals, although at a higher dosage, I realized that lower dosage oral MethylB12 capsule seems to have a really higher liver storage (regular blood tests after use). Although this might be due to being a different brand, I suspect that sublinguals provide lower storage in the liver.
This should sound reasonable, because logically sublinguals bypass the liver metabolism so the storage there should be lesser. In fact - yes after blood, it reaches the intestines again for excretion and some of them might be absorbed there again and reaches liver. But this cycyle really lowers the MethylB12 reaching the liveri, as in every cycle this amount diminishes.
Liver storage is really important for me. Because only a low amount of B12 seems to do the trick, and I am speaking of really low Mcg's here.
What I would like to ask is - as summarizing; do sublinguals lessen the liver storage? If so, can I ingest the sublinguals instead of mouth dissolvation process? Would this increase the liver storage? I know, when ingested, really only a low portion reached the system compared to the sublingual dissolve.
But in the past, lower oral caps created higher liver storage blood level. Now - a different brand, however, does ingesting a sublingual would create a same effect as a capsule, or sublingual's structure, although same molecule, is optimized for mouth dissolution? If otherwise, sublingual directly entering the stomach & intestine is the same as methyl B12 capsule? I am speaking of Methly B12's, both capsule and sublingual.
My question is about the liver storage.
I realized that when I take sublinguals, although at a higher dosage, I realized that lower dosage oral MethylB12 capsule seems to have a really higher liver storage (regular blood tests after use). Although this might be due to being a different brand, I suspect that sublinguals provide lower storage in the liver.
This should sound reasonable, because logically sublinguals bypass the liver metabolism so the storage there should be lesser. In fact - yes after blood, it reaches the intestines again for excretion and some of them might be absorbed there again and reaches liver. But this cycyle really lowers the MethylB12 reaching the liveri, as in every cycle this amount diminishes.
Liver storage is really important for me. Because only a low amount of B12 seems to do the trick, and I am speaking of really low Mcg's here.
What I would like to ask is - as summarizing; do sublinguals lessen the liver storage? If so, can I ingest the sublinguals instead of mouth dissolvation process? Would this increase the liver storage? I know, when ingested, really only a low portion reached the system compared to the sublingual dissolve.
But in the past, lower oral caps created higher liver storage blood level. Now - a different brand, however, does ingesting a sublingual would create a same effect as a capsule, or sublingual's structure, although same molecule, is optimized for mouth dissolution? If otherwise, sublingual directly entering the stomach & intestine is the same as methyl B12 capsule? I am speaking of Methly B12's, both capsule and sublingual.
ahmo
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Hey all, I'm on p 87 of this thread (weeks to get this far!!!). Has anyone else had issues with links to the wrong diagnosis thread? Sorry if this has been addressed in the next 80 pages, but don't want to keep spinning my wheels. Keep getting directed to another site that can't find that page.
Re the size of this thread--if new posters would make the attempt to review the first dozen or so pages, most of their questions would be answered, and the redundancy that has made this thread such a monster would be minimized. On the other hand, after reading Fred and Rich's responses over and over, I'm starting to remember them. Is there a way to modify the top of page banner to read--b12 the hidden story--protocol on p 3.
Thanks to posters for their histories and updates on how they're doing--I've learned as much from them and advice to them, as from years of digging elsewhere.
New posters who plow through the old posts will also see that Fred and others repeatedly emphasize that they are NOT md's. This thread shares the results of thousands and thousands of hours of diligent research and intimate experience--made accessible to those of us who are brain fogged or lack a science background. While I appreciate an informed debate, the petty backbiting is a waste of my time, and the thread. If you get a bit steamed, take a break before hitting reply. And remember that when making a quick post, nuances of courtesy may not make it into people's posts.
Re the size of this thread--if new posters would make the attempt to review the first dozen or so pages, most of their questions would be answered, and the redundancy that has made this thread such a monster would be minimized. On the other hand, after reading Fred and Rich's responses over and over, I'm starting to remember them. Is there a way to modify the top of page banner to read--b12 the hidden story--protocol on p 3.
Thanks to posters for their histories and updates on how they're doing--I've learned as much from them and advice to them, as from years of digging elsewhere.
New posters who plow through the old posts will also see that Fred and others repeatedly emphasize that they are NOT md's. This thread shares the results of thousands and thousands of hours of diligent research and intimate experience--made accessible to those of us who are brain fogged or lack a science background. While I appreciate an informed debate, the petty backbiting is a waste of my time, and the thread. If you get a bit steamed, take a break before hitting reply. And remember that when making a quick post, nuances of courtesy may not make it into people's posts.