Freddd
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Thankyou Rich for bringing some reasoned sanity to this whole thing.
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B-12 - The Hidden Story
- Thread starter Cort
- Start date
Thankyou Rich for bringing some reasoned sanity to this whole thing.
More about B12 and adrenal fatigue
I just joined the Yahoo adrenalfatigue group and did a search on B12. I didn't find any comments there suggesting that B12 stresses the adrenals. There were suggestions about supplementing B12 or making sure there is enough in the diet.
A search of PubMed likewise did not reveal any suggestion that B12 stresses the adrenals.
So far, I haven't found any hard evidence for this suggestion.
Frankly, it doesn't seem very plausible to me. Vitamin B12 is an essential nutrient. Every cell in the body needs it, including those in the adrenals. In the hierarchy of treatments for just about any disorder, I would place adequate nutrition near the beginning.
The only adverse effect I've seen reported for B12 is a skin rash, found rarely. It's true that people with CFS develop symptoms when given methylation treatment that includes B12 and folate, but I don't believe that they are associated with stressing the adrenals. The only piece of relevant evidence I have so far is from a person who had an abnormal cortisol diurnal variation prior to beginning methylation treatment, and found when retesting a few months into the treatment that it had normalized. I think this means that in her case, at least, the methylation treatment was beneficial to her adrenal function.
Rich
I just joined the Yahoo adrenalfatigue group and did a search on B12. I didn't find any comments there suggesting that B12 stresses the adrenals. There were suggestions about supplementing B12 or making sure there is enough in the diet.
A search of PubMed likewise did not reveal any suggestion that B12 stresses the adrenals.
So far, I haven't found any hard evidence for this suggestion.
Frankly, it doesn't seem very plausible to me. Vitamin B12 is an essential nutrient. Every cell in the body needs it, including those in the adrenals. In the hierarchy of treatments for just about any disorder, I would place adequate nutrition near the beginning.
The only adverse effect I've seen reported for B12 is a skin rash, found rarely. It's true that people with CFS develop symptoms when given methylation treatment that includes B12 and folate, but I don't believe that they are associated with stressing the adrenals. The only piece of relevant evidence I have so far is from a person who had an abnormal cortisol diurnal variation prior to beginning methylation treatment, and found when retesting a few months into the treatment that it had normalized. I think this means that in her case, at least, the methylation treatment was beneficial to her adrenal function.
Rich
" Freddd is not a doctor, nor does he have any medical training "
i really wished the manopolly of doctors to talk about cfs , suggest solutions about cfs could work for pwcs but as anyone with cfs knows , it did not up so far .. and there can be people better than the avarage doctor in the field medical science who r not docters , and any person ,who dont suggest exercise and get a job kind of nonsense, are better for me and this is the reason i m here .. if anyone thinks his cfs problem solutions r in the hands of doctors can try his chance tommorow in any hospital ending up with antidepressants .. i choose the other way .. btw , " first do no harm " may mean in the cfs puzzle , " wait 30 years and we shall handle this " .. in the mean time people who try to find their own solutions can be attacked at boards for fun of course ..
i really wished the manopolly of doctors to talk about cfs , suggest solutions about cfs could work for pwcs but as anyone with cfs knows , it did not up so far .. and there can be people better than the avarage doctor in the field medical science who r not docters , and any person ,who dont suggest exercise and get a job kind of nonsense, are better for me and this is the reason i m here .. if anyone thinks his cfs problem solutions r in the hands of doctors can try his chance tommorow in any hospital ending up with antidepressants .. i choose the other way .. btw , " first do no harm " may mean in the cfs puzzle , " wait 30 years and we shall handle this " .. in the mean time people who try to find their own solutions can be attacked at boards for fun of course ..
anne_likes_red
Senior Member
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Thanks Rich, for doing some additional research on our behalf. Much appreciated.
I'm personally trying to work out what I should best have "in place" before starting your protocol.
Pangborn and Baker (tough through the brainfog!) and McCandless have been enlightening too.
As suggested by them I've been working on gut issues as a starting point.
A clearer understanding of how methylation fits into the wider detoxification picture helps a lot, I'm enjoying greater understanding...just need to get the Vitamin Diagnostics tests and I'm ready to go.
Thanks again
I'm personally trying to work out what I should best have "in place" before starting your protocol.
Pangborn and Baker (tough through the brainfog!) and McCandless have been enlightening too.
As suggested by them I've been working on gut issues as a starting point.
A clearer understanding of how methylation fits into the wider detoxification picture helps a lot, I'm enjoying greater understanding...just need to get the Vitamin Diagnostics tests and I'm ready to go.
Thanks again
Rich I'm guessing that B12 causes/accelerates detox in toxic people (certainly it does in me when taken along with active folates). If you have adrenal fatigue and you detox too fast, additional stress is created for the adrenals. So there does seem to be some link between B12 and Adrenal issues, although only an indirect one (i.e. via detox). Like you I don't think there is any evidence to suggest that B12 is directly stressful on the adrenals. Detox on the other hand is stressful.
" Rich I'm guessing that B12 causes/accelerates detox in toxic people (certainly it does in me when taken along with active folates). If you have adrenal fatigue and you detox too fast, additional stress is created for the adrenals. So there does seem to be some link between B12 and Adrenal issues, although only an indirect one (i.e. via detox). Like you I don't think there is any evidence to suggest that B12 is directly stressful on the adrenals. Detox on the other hand is stressful "
hi garcia ,
i lived this same thing too , there is a dose of dexamethasone i normally use , like 0.3 mg , i have to take like 0.4- 0.5 while on b vits .. without adrenal support detox or start up or whatever it is could be very stressful for me i guess .. but i m also on an abx pulse so i cant certainly be sure what cause this detox and need for additional adrenal support ..
hi garcia ,
i lived this same thing too , there is a dose of dexamethasone i normally use , like 0.3 mg , i have to take like 0.4- 0.5 while on b vits .. without adrenal support detox or start up or whatever it is could be very stressful for me i guess .. but i m also on an abx pulse so i cant certainly be sure what cause this detox and need for additional adrenal support ..
Freddd
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Hi Mherschen,
Rich has saved me some time in presenting a few things to you. I would just like to add a couple of things. If you were to search Google Scholar with "Hashimoto's b12 deficiency" you would find a couple of thousand references ( a couple of million on regular google) speaking to all aspects of the apparant relationship including how lack of b12 triggers various autoimmune diseases including parietal cell antibodies and apparantly causing Perncious Anemia in a vicious cycle that worsens b12 deficiency. The technical explanations given by many of the various articles on autoimmune functioning go way over my head. I'm a systems analyst, plan design consultant and software developer, not a biochemist or whatever. I help detect fraudulent claims, provider practice profiles as influenced by reimbursement plans, preventing unbundling, data mining in general and everything management wants to know about what is going on inside of a group plan of insurance. I have presented to rooms full of doctors at various conferences in the areas I work in. In the consulting end of things I help audit providers and insurers while working for the plan trustees. Our goals are simple, help the plan members get quality effective treatment cost effectively. We have been enforcing clealiness and handwashing standards for contracted PPO providers since the early 80s. First year savings that we can provide the plan are typically 10% and have gone over 30%.
As many lists of b12 deficiency signs, symptoms and co-correlates from a multitude of sources include hypothyroidism in general and Hashimoto's specifically on their lists, I didn't have to go very far affield to get that idea. I just collected and consolodated the lists from many English speaking countries.
Regarding damage from sustained b12 deficiency, some of it becomes permanent and doesn't heal just because b12 is restored. Epithelial and endothelial tissue healing generally occurs in the first year after all njeeded cofactors are present. Much functionality returns in weeks to months. Neurological healing starts in months and takes years. As there are 4 forms of b12 in general use; cyanocobalamin and hydroxycobalamin which are both inactive and must be converted internally to active forms, and adensoylcobalamin and methylcobalamin (and collectively there are 20 or 30 variations on these names and spellings internationally so don't get upset by semantics), results vary considerably, by more than a factor of 1000 based on individual response to specific forms and how taken and the presence or lack of other cofactors, especially methylfolate as many folks can't convert folic acid adequately.
Some people are made considerably worse by taking cyanocobalamin for instance despite causing serum tests to be "in range". About one third of persons find cyanocobalamin and/or hydroxycobalamin ineffective typically in a multitude of studies.
As hypothyroidism and Hashimoto's is less than 1% of what many of us have to deal with, and those of us that are diganosed and in treament with our doctors for such and receive regular testing as our doctors determine, what we mostly deal with here are the things that our doctors fail to deal with at all because of their severe lack of knowledge and understanding on the issues. And that largely comes down to stealth b12 deficiencies and the many difficulties that it causes. Many of us have been tested and treated into near bankruptcy without good effect. Rich has focused strongly on the methylation cycle, I haven't. I'm much more focused on the neurological damage and how to heal it, but then that is where most of my damage is. It may comfort you to know that if I had continiued as my doctors would have had me do by the standards of practice in the USA with the conventional b12 therapy I would be in a wheelchair with a diaper or more likely dead after a period in a wheelchair. There is still some unhealed damage from subacute combined degeneration, caused by prolonged and severe unrecognized/undiagnosed b12 deficiency. However I have recovered my balance, about 50% of sensation and full muscular control over my feet, toes, legs and no longer have footdrop, incontinance and other such problems. Your advice would have me dead and my children following the same doomed path. I do wish it were as simple as you appear to think it is that taking b12 cures all effects of b12 deficiency almost immediately. It doesn't. I wouldn't have been ill most of my life. So by all means be cautious. Get all the tests you can afford and then some. My internist prescribes my large methylb12 injections because they very demonstrably work. His only comments to me about this whole protocol were of the "This is too complicated for most people. Compliance would be near zero. Insurance won't cover the injections so it is too expensive". I was and am cautious. I get tested regulalrly. I'm a belt and suspenders type guy who has spent almost my entire working life in the insurance and benefits business. The way to get insurance companies to adopt new methods is show them how it increases profit margin and decreases risk uncertainty. Casinos don't gamble, neither do insurance companies/trusts. They love group contracts that build in a guaranteed profit like utilities receive.
If you would be interested in a genuine dialog, and are willing to become better educated in some areas by all means pick a topic and let's discuss. And personally, I'm glad we have good moderators here. They keep the trolls away that are just out to attack and make trouble. They have nothing but my thanks and respect.
Rich has saved me some time in presenting a few things to you. I would just like to add a couple of things. If you were to search Google Scholar with "Hashimoto's b12 deficiency" you would find a couple of thousand references ( a couple of million on regular google) speaking to all aspects of the apparant relationship including how lack of b12 triggers various autoimmune diseases including parietal cell antibodies and apparantly causing Perncious Anemia in a vicious cycle that worsens b12 deficiency. The technical explanations given by many of the various articles on autoimmune functioning go way over my head. I'm a systems analyst, plan design consultant and software developer, not a biochemist or whatever. I help detect fraudulent claims, provider practice profiles as influenced by reimbursement plans, preventing unbundling, data mining in general and everything management wants to know about what is going on inside of a group plan of insurance. I have presented to rooms full of doctors at various conferences in the areas I work in. In the consulting end of things I help audit providers and insurers while working for the plan trustees. Our goals are simple, help the plan members get quality effective treatment cost effectively. We have been enforcing clealiness and handwashing standards for contracted PPO providers since the early 80s. First year savings that we can provide the plan are typically 10% and have gone over 30%.
As many lists of b12 deficiency signs, symptoms and co-correlates from a multitude of sources include hypothyroidism in general and Hashimoto's specifically on their lists, I didn't have to go very far affield to get that idea. I just collected and consolodated the lists from many English speaking countries.
Regarding damage from sustained b12 deficiency, some of it becomes permanent and doesn't heal just because b12 is restored. Epithelial and endothelial tissue healing generally occurs in the first year after all njeeded cofactors are present. Much functionality returns in weeks to months. Neurological healing starts in months and takes years. As there are 4 forms of b12 in general use; cyanocobalamin and hydroxycobalamin which are both inactive and must be converted internally to active forms, and adensoylcobalamin and methylcobalamin (and collectively there are 20 or 30 variations on these names and spellings internationally so don't get upset by semantics), results vary considerably, by more than a factor of 1000 based on individual response to specific forms and how taken and the presence or lack of other cofactors, especially methylfolate as many folks can't convert folic acid adequately.
Some people are made considerably worse by taking cyanocobalamin for instance despite causing serum tests to be "in range". About one third of persons find cyanocobalamin and/or hydroxycobalamin ineffective typically in a multitude of studies.
As hypothyroidism and Hashimoto's is less than 1% of what many of us have to deal with, and those of us that are diganosed and in treament with our doctors for such and receive regular testing as our doctors determine, what we mostly deal with here are the things that our doctors fail to deal with at all because of their severe lack of knowledge and understanding on the issues. And that largely comes down to stealth b12 deficiencies and the many difficulties that it causes. Many of us have been tested and treated into near bankruptcy without good effect. Rich has focused strongly on the methylation cycle, I haven't. I'm much more focused on the neurological damage and how to heal it, but then that is where most of my damage is. It may comfort you to know that if I had continiued as my doctors would have had me do by the standards of practice in the USA with the conventional b12 therapy I would be in a wheelchair with a diaper or more likely dead after a period in a wheelchair. There is still some unhealed damage from subacute combined degeneration, caused by prolonged and severe unrecognized/undiagnosed b12 deficiency. However I have recovered my balance, about 50% of sensation and full muscular control over my feet, toes, legs and no longer have footdrop, incontinance and other such problems. Your advice would have me dead and my children following the same doomed path. I do wish it were as simple as you appear to think it is that taking b12 cures all effects of b12 deficiency almost immediately. It doesn't. I wouldn't have been ill most of my life. So by all means be cautious. Get all the tests you can afford and then some. My internist prescribes my large methylb12 injections because they very demonstrably work. His only comments to me about this whole protocol were of the "This is too complicated for most people. Compliance would be near zero. Insurance won't cover the injections so it is too expensive". I was and am cautious. I get tested regulalrly. I'm a belt and suspenders type guy who has spent almost my entire working life in the insurance and benefits business. The way to get insurance companies to adopt new methods is show them how it increases profit margin and decreases risk uncertainty. Casinos don't gamble, neither do insurance companies/trusts. They love group contracts that build in a guaranteed profit like utilities receive.
If you would be interested in a genuine dialog, and are willing to become better educated in some areas by all means pick a topic and let's discuss. And personally, I'm glad we have good moderators here. They keep the trolls away that are just out to attack and make trouble. They have nothing but my thanks and respect.
Freddd
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Hi Rich,
The only adverse effect I've seen reported for B12 is a skin rash, found rarely.
I would like to address that having more data at this point. The skin rash I am familiar with is something that looks like acne. It is mostly reported with doses of hydroxyb12 above a certain dosage. Further it happens with methylb12 injectable that has been exposed to too much light and can be deliberately induced that way. The hypothesis is photolytic breakdown to hydroxyb12. Further, having just finished a short trial with injectable adenosylb12, the rash also appears, along with a loss of effectiveness, after the solution is about 10 days old with no light exposure and refrigerated. Adenosylb12 solution has always been considered more fragile. Would you happen to know what it breaks down to?
I'm preparing a post on the comparitive effects of 5 batches of methylb12, and very disturbingly, there are large variations.
Freddd
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Hi David,
The only things I have had reports of include D-Ribose for recycling the ATP and perhaps some of the other supplements that might be so involved. I have no specific knowledge of any. My exercise intolerance and post exercise fatigue and recovery seem fully covered by the adb12, methylfolate, l-carnitine-fumarate and Alpha Lipoic Acid. I'm back to the point that I can increase my arobic conditioning level pretty rapidly as long as I'm willing to spend the time. Also my altitude adjustment capabilty (going from 4500 to 7000 to 10,000 feet) is much improved from what it was in my 30s before the severe crash. It takes me about two weeks to accomodate to 7000 feet from 4500 and get back to the same performance level. I haven't had any periods of altitude sickness either since starting all this though I haven't had as much exposure.
Thanks Fred. I'm not on any cofactors at the moment. Hoping to stick with just the essentials since that has been working so well. (4 mb12, 2 adb12, 3 methylfolate)
I ask because I'm back to playing hockey twice a week (thanks to you and Rich!), and want to make sure I don't deplete anything. I haven't had any specific post-exertional symptoms, just wanted to be proactive. I was thinking about an extra B complex last night but thought I'd ask if there would be a better choice.
Freddd
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Hi David,
The l-carnbitine fumarate and ALA are where I would start and are likely to have the largest effects as they bring the mitochondrea up to full capacity. I had a doubling of arobic capacity 24 hours after starting l-carnitine fumarate running right over the wall without a blink that I had been hitting for months.
I have both (Jarrow), and have taken them for a bit. I didn't notice any additional energy, but perhaps my mitochondria are at capacity. Or it was not enough dosage, or enough time to tell a difference.
Freddd
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DIRECT COMPARISON OF FIVE DIFFERENT BATCHES OF INJECTABLE METHYLCOBALAMIN
Previously I have performed a comparison of 10 brands of sublingual methylcobalamin. Having found substantial differences in effectiveness amongst the 10 brands I speculated that the differences could be for more than one reason; for instance that there was some inherent differences between the methylcobalamin being used in the manufacture or differences in the process or formulation of the tablets or other unknown differences.
This time due to a convergence of coincidences I had vials from 5 different batches of injectable methylcobalamin in my possession at the same time.
Previously I have performed a comparison of 10 brands of sublingual methylcobalamin. Having found substantial differences in effectiveness amongst the 10 brands I speculated that the differences could be for more than one reason; for instance that there was some inherent differences between the methylcobalamin being used in the manufacture or differences in the process or formulation of the tablets or other unknown differences.
This time due to a convergence of coincidences I had vials from 5 different batches of injectable methylcobalamin in my possession at the same time.
- A vial I had lost in my freezer 15 months before from my usual compounding pharmacy that was produced from mb12 crystal from wholesaler 1.
- Two vials I had frozen as a reserve supply when my refill date was changed for unrelated reasons from 8 months previously, also from a different batch of mb12 crystal from wholesaler 1 and my usual pharmacy.
- Several vials as a partial fill of my current months prescription from my usual pharmacy and mb12 crystal from wholesaler 2.
- Several vials to complete the fill of the current month's prescription and the following month's prescription from my usual pharmacy from a different batch of mb12 crystal from wholesaler 2.
- Several vials obtained as a trial from a completely different source as I had been dissatisfied with recent batches of mb12 solution.
- Produces a characteristic tingling in the numb areas of my feet 2-3 hours after injection. Over time I regain feeling in my feet progressively and tendency to spasm in feet decreases. No acne type rashes. If acne type rashes are present they disappear within 3 days.
- The characteristic tingling is less pronounced or not present. Feet don't improve and don't get worse. Acne type rashes don't appear. Acne rashes if present fade within a week or two.
- There is no tingling following injection. Tendency to have spasms in my feet increases. Over several weeks areas and density of numbness increases. Acne type rashes appears after 2 weeks or so and remains for the rest of the batch.
- There is no tingling following injection. Tendency to have spasms in my feet increases. Over several weeks areas and density of numbness increases. Acne type rashes appears after 1 week or so and remains for the rest of the batch.
- There is no tingling following injection. Tendency to have spasms in my feet increases. Over several weeks areas and density of numbness increases. Acne type rashes appears after 3 days or so and remains for the rest of the batch.
richvank
and then you said
Can you explain the difference please?
No-one is questioning this. I have been using Jarrow b12 for years for my endocrine system, whichis another reason why I question what Fredd is saying. It was only when I took a massive dose, not the 200 to 400 mics mentioned that I had adverse effects. It is the amount that we have taken that we are questioning. I had a normal blood test result and took b12 for quite sometime before I took the huge dose that Fredd advises. I could not have been deficient.
In direct contradiction of both of these studies Fredd claims
Well this opinion just shows us how little Fredd knows about hypothyroidism and Hashimotos.
I have no problem with anyone sharing what helped them and answering questions but I do have a very big problem with anyone who is not medically qualified and who displays a lack of understanding about Hashimotos to the extent that he confuses it with hypothyroidism, and makes the previous statement and when a growing number of desperate people try his protocol and have a reaction that is beyond detoxing or starting up or anything else (does he think that after years of this we do not know what a Herx is?) and he tells us to KEEP GOING instead of at that point saying I AM NOT MEDICALLY QUALIFIED TO ADVISE YOU IF YOU ARE HAVING SUCH A BAD REACTION YOU MUST SPEAK TO SOMEONE ELSE .
This is in my opinion VERY DANGEROUS.
We are being expected to accept that the two people here who are agreeing with each other that cannot be dangerous, know more on the subject than we sufferers do due to their understanding of the views of certain researchers yet the forums which have been mentioned for Hashi sufferers contain warnings about taking b12 supplements slowly. There is a lot of disagrement in the endocrinal world and we sufferers often have to go it alone and listen to our own bodies. So now we have two people telling us who have had a very bad reaction and mine was so bad that I was suicidal for a few days and I have been ill for a very long time with mercury poisoning and Lyme disease a combination that is hard to beat in terms of suffering, and the reaction to the b12 was more than I could take or had ever experienced before.
All I ask is that when another person like us comes along and reacts like we have that they be told by Fredd that he cannot advise rather than what he is doing encouraging them to go on and telling them that what their body is saying most strongly, that their adrenals and thyroid cannot take the strain, is incorrect instead of overiding their concerns.
The continuation of this issue which has been going on for quite some time, is causing me serious concerns about what is going on here. The fact that Fredd is actually encouraging people to continue instead of allowing them to do so without any outward pressure with NO MEDICAL QUALIFICATIONS regarding a condition which must be handled with extreme care, is what is being addressed but not emphasised enough.
and then you said
Can you explain the difference please?
No-one is questioning this. I have been using Jarrow b12 for years for my endocrine system, whichis another reason why I question what Fredd is saying. It was only when I took a massive dose, not the 200 to 400 mics mentioned that I had adverse effects. It is the amount that we have taken that we are questioning. I had a normal blood test result and took b12 for quite sometime before I took the huge dose that Fredd advises. I could not have been deficient.
In direct contradiction of both of these studies Fredd claims
Well this opinion just shows us how little Fredd knows about hypothyroidism and Hashimotos.
I have no problem with anyone sharing what helped them and answering questions but I do have a very big problem with anyone who is not medically qualified and who displays a lack of understanding about Hashimotos to the extent that he confuses it with hypothyroidism, and makes the previous statement and when a growing number of desperate people try his protocol and have a reaction that is beyond detoxing or starting up or anything else (does he think that after years of this we do not know what a Herx is?) and he tells us to KEEP GOING instead of at that point saying I AM NOT MEDICALLY QUALIFIED TO ADVISE YOU IF YOU ARE HAVING SUCH A BAD REACTION YOU MUST SPEAK TO SOMEONE ELSE .
This is in my opinion VERY DANGEROUS.
We are being expected to accept that the two people here who are agreeing with each other that cannot be dangerous, know more on the subject than we sufferers do due to their understanding of the views of certain researchers yet the forums which have been mentioned for Hashi sufferers contain warnings about taking b12 supplements slowly. There is a lot of disagrement in the endocrinal world and we sufferers often have to go it alone and listen to our own bodies. So now we have two people telling us who have had a very bad reaction and mine was so bad that I was suicidal for a few days and I have been ill for a very long time with mercury poisoning and Lyme disease a combination that is hard to beat in terms of suffering, and the reaction to the b12 was more than I could take or had ever experienced before.
All I ask is that when another person like us comes along and reacts like we have that they be told by Fredd that he cannot advise rather than what he is doing encouraging them to go on and telling them that what their body is saying most strongly, that their adrenals and thyroid cannot take the strain, is incorrect instead of overiding their concerns.
The continuation of this issue which has been going on for quite some time, is causing me serious concerns about what is going on here. The fact that Fredd is actually encouraging people to continue instead of allowing them to do so without any outward pressure with NO MEDICAL QUALIFICATIONS regarding a condition which must be handled with extreme care, is what is being addressed but not emphasised enough.
defence against abuse
hi fredd ,
i think u seriously need ur own website , or a link by phonix rising given to u where u can make effective moderation against trolls using various ways which r obvious by now and dont need to be analyzed or mentioned in detail again and again ..
i dont know what other members feel following this thread here but it is heartbreaking for me to see you tring to explain urself and the protocol that helped u and some others against the attacks under the cover of criticism .. in doing so the followers of ur protocol and knowladge which is not yet in the medical literature can be left alone with pure information and real and honest critisim/ analysis of the protocol ..
hi fredd ,
i think u seriously need ur own website , or a link by phonix rising given to u where u can make effective moderation against trolls using various ways which r obvious by now and dont need to be analyzed or mentioned in detail again and again ..
i dont know what other members feel following this thread here but it is heartbreaking for me to see you tring to explain urself and the protocol that helped u and some others against the attacks under the cover of criticism .. in doing so the followers of ur protocol and knowladge which is not yet in the medical literature can be left alone with pure information and real and honest critisim/ analysis of the protocol ..
R
Robin
Guest
@ freddd, thanks for the support! Just avoid the comments about education levels of other forum members; it tends to set people off. Thanks!
@ Brenda, yes, Freddd is not an MD, but neither is anyone else here discussing health advice. To me, it's self-evident that health advice taken off the internet should be followed at your own risk but perhaps we need some sort of disclaimer? I will PM Cort about that. Consider that probably 90% of the discussion in these forums is alternative medicine and thus outside mainstream; for example if you went to an MD s/he would tell you that there is no evidence for such things as detox or chronic lyme disease.
In any case, I think the topic of Freddd's background has been well established, but please continue the discussion on the merits (or your concerns or personal adverse reaction) of the protocol.
@ Brenda, yes, Freddd is not an MD, but neither is anyone else here discussing health advice. To me, it's self-evident that health advice taken off the internet should be followed at your own risk but perhaps we need some sort of disclaimer? I will PM Cort about that. Consider that probably 90% of the discussion in these forums is alternative medicine and thus outside mainstream; for example if you went to an MD s/he would tell you that there is no evidence for such things as detox or chronic lyme disease.
In any case, I think the topic of Freddd's background has been well established, but please continue the discussion on the merits (or your concerns or personal adverse reaction) of the protocol.
Hi Brenda. Based on the people's experiences I've read, measuring serum B12 does not rule out deficiency. The ranges are suspect in the first place, but I've seen people well within range improve on the protocol.
The doses are relative, massive for you may be miniscule for me. Finding how much you need seems to be a key part. Fred's dosage suggestions seem to based on what the majority of people respond to, as it should be. He has basically 2 routes, the slow titration for people that want to be cautious, and a quicker route. I've never read where he said anyone has to take a certain amount, but I could have missed it.
I believe he urges people to continue despite adverse effects because the majority of people that start this protocol have adverse effects initially that subside. I was one of them, and am very glad I did not stop. Between this thread and the main active B12 thread on Wrong Diagnosis, which has way more participants, I only recall less than 5 people that have had to stop. I'm guessing that if a larger percentage of people didn't get past the initial difficulties Fred would adjust his suggestions accordingly.
I've had a lot of improvement with the help of Fred and Rich in just 4 months. I hope too see it reflected by the numbers in my next methylation panel test.
Take care everyone.
Absolutely. Hard to believe it was even brought up. If he is a doctor he's a lousy one, spending so much time here and at WD giving out free advice :Retro smile:.
I'd wager Fred knows more about cobalamins and folates than most MDs, certainly more than the one's I've been to. Mine, who himself does methylcobalamin injections weekly, is not convinced that sublingual administration of B12 would work. I'm proving him wrong of course.
Hi David,
Playing hockey twice a week sounds like a nice bit of energy!! I can share what has given me extra energy. I also wanted to comment because I didn't notice anything at a low dose and for a while didn't try higher doses due to not noing anything at the lower dose.
I tried 500 mg L-carnitine and had been taking 300 mg ALA (two times per day) all along and noted no changes in energy, when I later upped this dose considerably (4-5g) I saw large increases in energy. Also, 'extra' has seemed to help me avoid post exhertion issues. I include d-ribose also, but m not convinced it's essential for me
Velha
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- Messages
- 733
velha508, thanks for that tip, I'm still working my way up the methylb12 chain but I'm going to consider upping my l-carnitine and ALA to see if that makes a difference; I have been noticing some good changes but my energy level is still poor.
dmholmes, wow, hockey twice a week, maybe I should up my methylfolate, too! Congratulations!
richvank, I really appreciate your research background and your ability to articulate what you research clearly and understandably (for us lay folk). It helps us to have the information, and it also helps to have the discussion be about issues, research, and experience. Mudslinging does nothing but raise the level of angst. Which I think CFSers have quite enough of, thank you. All of us here are interested in putting the puzzle pieces together; differences of opinion and experience can enrich us if we look at it that way.
For myself, I will say that it's been really helpful for me to have Freddd and others encouraging me through the awful bits, not to mention having Freddd come up with a protocol I can afford and which is getting me some results. I've gotten to a phase where I'm functioning somewhat better, whereas a few months ago (before I started this protocol) it seemed no matter what I did I was going further and further down the tubes. I know my experience may not be everybody's, and I appreciate that everyone brings a different situation to the B12 testing table, but I am grateful to have found this protocol and this forum. There are certainly plenty of unknowns here, but there are more knowns than most doctors can provide for my situation, and it isn't bleeding me dry financially while the doctor pretends to know something and tries just one more -purely speculative - test or medication
.
dmholmes, wow, hockey twice a week, maybe I should up my methylfolate, too! Congratulations!
richvank, I really appreciate your research background and your ability to articulate what you research clearly and understandably (for us lay folk). It helps us to have the information, and it also helps to have the discussion be about issues, research, and experience. Mudslinging does nothing but raise the level of angst. Which I think CFSers have quite enough of, thank you. All of us here are interested in putting the puzzle pieces together; differences of opinion and experience can enrich us if we look at it that way.
For myself, I will say that it's been really helpful for me to have Freddd and others encouraging me through the awful bits, not to mention having Freddd come up with a protocol I can afford and which is getting me some results. I've gotten to a phase where I'm functioning somewhat better, whereas a few months ago (before I started this protocol) it seemed no matter what I did I was going further and further down the tubes. I know my experience may not be everybody's, and I appreciate that everyone brings a different situation to the B12 testing table, but I am grateful to have found this protocol and this forum. There are certainly plenty of unknowns here, but there are more knowns than most doctors can provide for my situation, and it isn't bleeding me dry financially while the doctor pretends to know something and tries just one more -purely speculative - test or medication
.