B-12 - The Hidden Story

[juniemarie]

I am also glad that Freddd was willing to stick his neck out, because there are others here who have been helped by it. Some seem to be following the protocol exactly as Freddd has described, others have tweeked it to suit their particular needs. Freddd never promised any miracle's as far as I know. When you are desperate as all of us are, somewhere in the recess of your brain, thats what you are looking for whether it has been promised or not. But thats no reflection on Freddds protocol. Its a crap shoot with this illness. We need to remember that whenever we try something new and we feel that sense of renewed hope, but also when it fails.

 

[Freddd]

I am also glad that Freddd was willing to stick his neck out, because there are others here who have been helped by it. Some seem to be following the protocol exactly as Freddd has described, others have tweeked it to suit their particular needs. Freddd never promised any miracle's as far as I know. When you are desperate as all of us are, somewhere in the recess of your brain, thats what you are looking for whether it has been promised or not. But thats no reflection on Freddds protocol. Its a crap shoot with this illness. We need to remember that whenever we try something new and we feel that sense of renewed hope, but also when it fails.

Hi Juliemarie,

I'm glad you posted I think that it is important to keep things in perspective. To keep things in perspective, professionally I am used to handling data from groups of under 10,000 to over a million in aggragate, often composed of lots of small subgroups with many variations on a plan. I developed software that allowed the easy offerring by even a small management company of hundreds of customized plans in hundreds of rate zones with almost any elligibilty periods and copay structures based on fee for service, capitation including capitated specialties and mixed financial model plans. Because of this experience seeing a deficiency model that included not only the base substances but the basics and critical cofactors in mutitudinous combinations, was right up my alley. In my business I worked with groups but had to account for how it would handle each individual circumstance. Customer satisfaction was a number one priority along with uncompromising dedication to quality. Quality often comes from doing things sensibly.

To be able to do this we were always having to examine the assumptions behind why something was done the way it was. For instance in the news recently was an NYC a health plan did an analysis of what was causing high ER utilization and very high expenses. They determined that it was actually caused by their reimbursement plan and what they would pay for. There were about 100 people that averaged 70 ER visits per year each. That's 7 million dollars they had to pay. By changing what they would reimburse for, they found that if these people were visited by a home healthcare nurse every week who would get family memers involved in the patient care and make sure medications were being taken without running out and all sorts of seemingly minor things that ER visits in this population could be cut more than 90% and were able to save the plan about 80% of previous expenditures. Making people wait until they were sicker who had no transportation options could get an ambulance because they wouldn't pay for a cab when the persons were not as sick, caused massive sufferring and major cost. Now the people involved are getting better care with much greater patient satisfaction at a much lower cost. Of course the plan had to be rewritten to cover these other expenses. A lot of this is common sense.

In the active b12 protocol, because I'm a systems analyst, I paid attention to things most people wouldn't. Why were so may doctors unable to diagnose and treat me effectively. Why did so few people have good responses when following certain protocols even though they "should" have had more effectivness. Why did a large percentage of people following protocol x have much better results than those following protocol y which was very similar. Why did some folks following protocol x have much better results than others following protocol x.

In so many cases it's the little things. Using methylb12 and adenosylb12 instead of cyanob12 or hydroxyb12 increased the percentage of responders from under 70% to about 100%. Changing to both active b12s increased degree of response tremendously. It's true we don't know what percentage NEED BOTH B12s, but increases results substantially in a large percentage of people. Some people have no obvious effect from both, some have obviously profound effects from each and both and a lot of at least some effects from each. The brand of methylb12 and the technique of using it under the lip for a specifed time is an excellent example. It increases the likelihood of success for a person about 100 times over what it would be to just buy any old b12 taken in any old way. Washing hands at the hospital, or clinic/office, decreases the risk of deadly and expensive aquired infections by a huge amount. By specifying L-carnitine fumarate instead of acetyl l-carnitine for THIS specific purpose of aiding adb12 increases results by a sizable percentage. The specification of methylfolate instead of folic or maybe folinic acid increases the odds of success by a factor of 2x or 3x. It makes no difference in some people and makes all the difference in the world for others. All of this comes down to paying attention to what didn't work along the way and why.

Yes, I was my own test subject. I was an extreme one. One of the most difficult and troublesome you could find. I've been kicked out of more practices than anybody else I've come across because I refuse to keep doing the same things that never worked before in the hope of magic. I had more things wrong than any 3 typical people. Most people only have some subset of my problems. Some have additional things. A lot of things cross over, such as the brand and method of use of sublingual mb12 appears to apply to everybody. Being my own subject I could easily perform trials without getting anybody but my doctor to agree. Some people have more sensitivity to specific oils or brands of SAM-e or other things that didn't affect me. I try to learn from those and include those as well. In presenting this protocol all I can really say is that based on the composit experience of many people doing these things in these ways appears to give the best odds of having beneficial results. I often question people closely, not because I doubt what reactions they had but becasue I want to know the exact circumstances and details of their reactions. The "why" of their reactions is important but often isn't what they want to assign them too so I'm looking for the details of what happened but not necessarily the hypothetical explanation which may not make sense when other things are considered. Startup symptoms will range from mild to extreme but they will exist. The startup effects are generally transitory and keep changing to other things fairly rapidly with some things healing and disappearing from sight. As there are hundreds of dependencies in healing so far having any comprehensive picture of what order things heal in is beyond our reach. Each person is different and has different needs of combinations and relative quantities of various substances. Because we are dealing with root causes things are not merely being covered up but are largely actually healing. Some damage may not heal but improved functionality is sometimes possible without full healing. All of this can look very confusing in isolation. A 20-30 factor problem is likely beyond most persons ability to cope so they throw up their hands in frustration and look for some good magic bullets with a plausible line of bafflegab. The bafflegab people always disliked me because I dissect the bafflegab and it ends up not being believable when all the defects are looked at. Good luck.

 

[juniemarie]

Wow! The way your mind thinks just blows me away and leaves me stunned! It goes way way over my head. I think in much more simplistic earthy organic ways. I for one am very grateful you think the way you do and you bother to share with others. Not because I have been helped by your protocol, because I have not tried it yet(I'm still mucking about trying to figure out which way to go) but because others here have benefited from your work and knowledge. OK now I shall get back to navel gazing and underwater basket weaving.

 

[mherschen]

Hi Folks - After reading the last few pages I just want to chime in here and say that starcycle is completely right on this one. If you go to any forum like the Real Thyroid Help forum (http://forums.realthyroidhelp.com/viewforum.php?f=2) or the yahoo adrenal groups, where people have been studying and struggling with thyroid and adrenal issues for years, they will all tell you that vitamin B12 puts a strain on adrenal function. It's always recommended in those forums that a person with adrenal and thyroid problems supplements B12 last, when they are stabilized, because of the strain on the adenals it causes. I know myself that when I take too much B12, my adrenals weaken after a few days and the thyroid symptoms get worse. So yes, it is a fact that B12 affects adrenal function.

Edited for talking about a member, rather than directly addressing the member. on Hashimoto's disease and hypothyroidism. Hashimoto's disease is not hypothyroidism. Hashimoto's disease means there are immune system antibodies attacking the thyroid gland. Hashimoto's disease can lead to hypothyroidism because of damage and destruction of the thyroid gland, but it's not in and of itself necessarily hypothyroidism.

Therefore, Edited for talking about a member, rather than directly addressing the member. Hashimoto's disease is caused by B12 deficiency, then of course it should then be possible to reverse and "cure" Hashimoto's disease with B12. All that would mean is that the antibodies would have stopped attacking the thyroid. The person could still by hypothyroid because of the existing thyroid destruction without having Hashimoto's, which again refers to the antibodies attacking the thyroid. I have not seen any research showing that B12 cures Hashimoto's disease, however, Edited for talking about a member, rather than directly addressing the member.

Thank you.

 

[Freddd]

Hi Folks - After reading the last few pages I just want to chime in here and say that starcycle is completely right on this one. If you go to any forum like the Real Thyroid Help forum (http://forums.realthyroidhelp.com/viewforum.php?f=2) or the yahoo adrenal groups, where people have been studying and struggling with thyroid and adrenal issues for years, they will all tell you that vitamin B12 puts a strain on adrenal function. It's always recommended in those forums that a person with adrenal and thyroid problems supplements B12 last, when they are stabilized, because of the strain on the adenals it causes. I know myself that when I take too much B12, my adrenals weaken after a few days and the thyroid symptoms get worse. So yes, it is a fact that B12 affects adrenal function.

I think Freddd is also a little confused on Hashimoto's disease and hypothyroidism. Hashimoto's disease is not hypothyroidism. Hashimoto's disease means there are immune system antibodies attacking the thyroid gland. Hashimoto's disease can lead to hypothyroidism because of damage and destruction of the thyroid gland, but it's not in and of itself necessarily hypothyroidism.

Therefore, if as Freddd claims Hashimoto's disease is caused by B12 deficiency, then of course it should then be possible to reverse and "cure" Hashimoto's disease with B12. All that would mean is that the antibodies would have stopped attacking the thyroid. The person could still by hypothyroid because of the existing thyroid destruction without having Hashimoto's, which again refers to the antibodies attacking the thyroid. I have not seen any research showing that B12 cures Hashimoto's disease, however, but maybe if Freddd has those citations or studies he can post them so we can all see.
Thank you.

Hi Mherschen


I think Freddd is also a little confused on Hashimoto's disease and hypothyroidism. Hashimoto's disease is not hypothyroidism. Hashimoto's disease means there are immune system antibodies attacking the thyroid gland. Hashimoto's disease can lead to hypothyroidism because of damage and destruction of the thyroid gland, but it's not in and of itself necessarily hypothyroidism.... then of course it should then be possible to reverse and "cure" Hashimoto's disease with B12.

I think you are a little confused. If you had read more deeply here you would have seen that I have stated over and over that Hashimotto's is an autoimmune disease which is caused by b12 deficiency. By the time I ever come in contact with people the active period of autoimmune destruction is long over and most have a resulting hypothyroid condition. I have never come into contact with anybody in the active autoimmune destructive phase as far as I know and I know of nothing that has any effect on it once it has started. Also, once the damage is done, as I've stated before b12 has no effect on the thyroid and does not heal it in any way of which I am aware so stop trying to put ridiculous statements in my mouth.

So your friends have been strugggling for years with their problems. So have most of the people here. Fortuantely some are having the struggle eased up a bit with the active b12 protocol. As most here have only been at this a few months most here are not very far along. I'm glad to say that elsewhere I know of a lot of people who have been at this a couple of years and are no longer struggling as most of their problems are improved or improving. The problems that remain are often uncovered comorbidities. It's surprsing how much the struggle can be reduced if a few hundred symptoms are removed from consideration by the use of active b12s, folate and cofactors. Hashimoto's and other causes of hypothyroidism are unaffected. On the other hand, many folks who thought they had adrenal problems no longer have the symptoms that would cause them to think that after a year of active b12s, folate and cofactors. So do you want to restate what you say and turn it into something meaningful and helpful or what?

 

[mherschen]

Hi Mherschen


I think Freddd is also a little confused on Hashimoto's disease and hypothyroidism. Hashimoto's disease is not hypothyroidism. Hashimoto's disease means there are immune system antibodies attacking the thyroid gland. Hashimoto's disease can lead to hypothyroidism because of damage and destruction of the thyroid gland, but it's not in and of itself necessarily hypothyroidism.... then of course it should then be possible to reverse and "cure" Hashimoto's disease with B12.

I think you are a little confused. If you had read more deeply here you would have seen that I have stated over and over that Hashimotto's is an autoimmune disease which is caused by b12 deficiency. By the time I ever come in contact with people the active period of autoimmune destruction is long over and most have a resulting hypothyroid condition. I have never come into contact with anybody in the active autoimmune destructive phase as far as I know and I know of nothing that has any effect on it once it has started. Also, once the damage is done, as I've stated before b12 has no effect on the thyroid and does not heal it in any way of which I am aware so stop trying to put ridiculous statements in my mouth.

So your friends have been strugggling for years with their problems. So have mnost of the people here. Fortuantely some are having the struggle eased up a bit with the active b12 protocol. As most here have only been at this a few months most here are not very far allong. I'm glad to say that elsewhere I know of a lot of people who have been at this a couple of years and are no longer struggling as most of their problems are improved or improving. The problems that remain are often uncovered comorbidities. It's surprsing how much the struggle can be reduced if a few hundred symptoms are removed from consideration by the use of active b12s, folate and cofactors. Hashimoto's and other casues of hypothyroidism are unaffected. On the other hand, many folks who thought they had adrenal problems no longer have the symptoms that would cause them to think that after a year of active b12s, folate and cofactors. So do you want to restate your [argument][edited from post above for unnecessary pejorative comments]

Hi Freddd,

I'm not confused at all. B12 taxes the adrenals, and everyone who has experience with adrenal problems is aware of that.

I'm also not putting words in your mouth. Let's just take a look at your statements and see for ourselves what you were stating.

Hi Starcycle,

I think that your last few posts demostrate a profound misunderstanding of active b12s. Hashimoto's for instance, is known to be casued by B12 deficiency. However, as it is organ damage from autoimmune problems, just taking b12 after the fact does not cure Hashimoto's.

I don't think anyone ever claimed that B12 reverses organ damage (the thyroid is a gland, by the way, not an organ). That would be quite a remarkable claim, at least. Maybe if you read a little more closely, as you accuse me of not doing, you would have perceived that no one was claiming that at all.

But there are several other problems with your statement, as well, namely your incorrect idea that Hashimoto's refers to glandular damage. The tissue damage to the gland (again, not organ) is the result of the antibody attacks, which is called Hashimoto's. In other words, the autoimmunity is Hashimoto's, the glandular damage is the result of the autoimmunity. So your terminology is a little bit mixed up.

If Hashimoto's meant gland damage (or "organ damage," as you state it), then a person whose thyroid was damaged in a car accident or radiation, for example, would then be said to have Hashimoto's. But of course that is not correct, Hashimoto's refers only to the autoimmune condition.

From that mistake, you then claim, without presenting any evidence that I can see, at least, that Hashimoto's is in fact caused by B12 deficiency. The first problem there, as I just said, is that you don't seem to have any evidence to back that assertion. If there is evidence posted somewhere in the thread and I just overlooked it I apologize -- if you could repost it here now that would be appreciated.

But the second problem is that if B12 deficiency, as you claim, causes Hashimoto's disease -- which as we just said is an autoimmunity -- then common sense would dictate that supplementing B12 would ameliorate the autoimmunity. But there is no evidence anywhere that I know of that shows that, either. I think if B12 did reverse Hashimoto's, or even just put it into remission, we would have heard about it by now. Hashimioto's can be measured quite easily, and the mainstream doctors all believe in it. It would strain credulity to think that B12 was not tried for Hashimoto's at some point in history, whether by the US, the Russians, or more likely the Japanese, and that if they found it worked they would suppress that information. It sounds a little bizarre, in fact.

Moving on, it's also wrong to say that nothing has any effect on the active destruction of the gland during Hashimoto's, as you state here, quoted from above:

I have never come into contact with anybody in the active autoimmune destructive phase as far as I know and I know of nothing that has any effect on it once it has started.

But that is so far from being correct that I find it hard to believe than anyone even would say that. It's obvious that, whatever you might know about B12, you obviously know nothing about Hashimoto's disease.

The antibodies can be reduced quite easily, in fact, just by taking thyroid hormone, which is the mainstay treatment for Hashimoto's: adding thyroid hormone, either T4 or sometimes T3+T4, whether something like synthroid + cytomel, or a natural product like Armour thyroid, which then stops the thyroid from producing hormone, which reduces the antibody attacks and essentially "turns off" the autoimmune destruction. Edit: removed unnecessary personal attack.

My thyroid currently is being destroyed by antibodies -- so now you do know someone with "active" Hashimoto's disease -- only I am intolerant to the thyroid hormone replacement medications because my adrenals are dysfunctional for whatever CFS reason(s). Adding thyroid causes severe worsening because of cell energy metabolic problems, and adding B12 causes a spiked adrenal output leading to a thyroid dump, then followed by increased hypothyroidism.

That's what happens to most people with CFS who have thyroid disorder, as I suggested by referring you to the Real Thyroid Help forum and the yahoo adrenal forums where a great many people have these complications. In almost all of those cases, the reports are the B12 worsens the condition, which is why the people "in the know" there counsel people to avoid B12 until their condition is stabilized and they can tolerate it. Anyone can go to those sites and ask for themselves, it's not like I'm just making it up out of thin air.

What seems to be made up out of thin air, in fact, is the idea that B12 deficiency causes Hashimoto's, that B12 has no effects on the adrenal, and some of the other strange ideas you propose in this regard. They don't seem very accurate, actually, especially the idea that B12 doesn't affect the adrenals. It most certainly does, and when you affect the adrenals you affect thyroid hormone function. It's not called the hypothalamic pituitary adrenal axis for nothing. Edit: removed unnecessary personal attack. but that doesn't really change the facts as most people with these complex adrenal and thyroid problems know them. But like I said, anyone can go ask and find out for themselves, and then decide whether they want to believe you, or believe the real life experience of literally hundreds if not thousands of other people who have had the same negative results from adding B12 too soon or too high in hypothyroid cases.

Edited for demeaning, sarcastic remark.

 

[dmholmes]

Fred, I've read that some people increase their dosage of certain supplements on days of vigorous exercise. Any parts of the protocol that you think could use extra amounts after exercise?

 

[brenda]

I know of nothing that has any effect on it once it has started.

Well this doctor does

http://www.amazon.de/Still-Thyroid-Symptoms-Tests-Normal/dp/1600376703

He takes his patients off gluten and casein and the antibodies disappear - rather refutes the b12 deficiency theory for Hashimotos.

He say that the immune system is mistaking thyroid cells for the gluten that gets into the bloodstream from LG and that is why it attacks.

I have Hashis and before I tried Fredds way of holding the b12 under my lip and getting a huge dose instead of the smaller and probably safer dose I have been taking for years taking the Jarrow b12. The huge dose cause me severe problesm like starcycle and a few others here, but when we said that it did not feel right and that our adrenals were stressed too much, of course Fredd overuled us [edited for personal attack]. Luckily we listened to our bodies and not to him.

 

[mherschen]

Wow - it appears that Freddd or someone else had my entire post deleted. I didn't save a copy, so that is very unfortunate. In fact, it appears that all my posts are being deleted. I am pm-ing this to brenda so at least someone is aware that this is happening. You can see that Freddd quoted my post in his, but the original has been deleted. And my post following that one is deleted, too. Very shady and questionable.

[Moderator: Your posts were reported to the moderators; they were sent to the moderation queue until we had time to review them. They have been restated and edited, per our forum rules].

As Brenda has also now confirmed, B12 can be problematic for people with adrenal-related CFS and thyroid problems, including Hashimoto's. I pointed to the Real Thyroid Help forum and also to the yahoo groups adrenal forum for people to go and research and ask other people for themselves, forums where it is well known that B12 has a stressing effect on the adrenals and can therefore make certain stages of thyroid problems worse.

As I said in the deleted post, [edited for criticism of the person, not the argument], including the issues of Hashimoto's disease and hypothyroidism. Hashimoto's is not hypothyroidism, Hashimoto's refers to the presence of antibodies to the thryoid, which is a gland, not an organ as Freddd incorrectly stated it. Hashimoto's can lead to hypothyroidism, but it's not in and of itself synonymous with hypothyroidism.

B12 is not shown in any study to reverse or "cure" Hashimoto's disease. I asked Freddd to provide evidence for his dangerous and reckless claims, but instead I guess he chose to delete the post, or have it deleted. With that kind of thing happening, I would not consider this thread or this forum a useful source of information for anyone. There is no telling what other information and messages have also been deleted. I would suspect more than a few.

Caveat emptor with this "protocol," and apparently with anything you read on this site. It doesn't appear that we are getting the complete picture, for whatever reason the people here have for wanting to suppress facts and promote unproven and potentially dangerous protocols. Even the doctors know that the first principle to follow is "do no harm." When harm starts happening and people say "keep going anyway," and then delete posts that are reporting harm, that is a very dangerous situation to be in.

As far as I can tell Freddd is not a doctor, and he has not had any medical training. I would be very careful of following "advice" like his from some random person on the internet. At the very least, ask your doctor if you should be taking all these huge milligrams of B12 before you start just taking it because some guy on the internet says you should. That can be very dangerous.

 

[lebowski]

"mherschen
Wow - it appears that Freddd or someone else had my entire post deleted. I didn't save a copy, so that is very unfortunate. In fact, it appears that all my posts are being deleted. I am pm-ing this to brenda so at least someone is aware that this is happening. You can see that Freddd quoted my post in his, but the original has been deleted. And my post following that one is deleted, too. Very shady and questionable.

As Brenda has also now confirmed, B12 can be problematic for people with adrenal-related CFS and thyroid problems, including Hashimoto's. I pointed to the Real Thyroid Help forum and also to the yahoo groups adrenal forum for people to go and research and ask other people for themselves, forums where it is well known that B12 has a stressing effect on the adrenals and can therefore make certain stages of thyroid problems worse.

As I said in the deleted post, Freddd seems to be confused on a few things, including the issues of Hashimoto's disease and hypothyroidism. Hashimoto's is not hypothyroidism, Hashimoto's refers to the presence of antibodies to the thryoid, which is a gland, not an organ as Freddd incorrectly stated it. Hashimoto's can lead to hypothyroidism, but it's not in and of itself synonymous with hypothyroidism.

B12 is not shown in any study to reverse or "cure" Hashimoto's disease. I asked Freddd to provide evidence for his dangerous and reckless claims, but instead I guess he chose to delete the post, or have it deleted. With that kind of thing happening, I would not consider this thread or this forum a useful source of information for anyone. There is no telling what other information and messages have also been deleted. I would suspect more than a few.

Caveat emptor with this "protocol," and apparently with anything you read on this site. It doesn't appear that we are getting the complete picture, for whatever reason the people here have for wanting to suppress facts and promote unproven and potentially dangerous protocols. Even the doctors know that the first principle to follow is "do no harm." When harm starts happening and people say "keep going anyway," and then delete posts that are reporting harm, that is a very dangerous situation to be in.

As far as I can tell Freddd is not a doctor, and he has not had any medical training. I would be very careful of following "advice" like his from some random person on the internet. At the very least, ask your doctor if you should be taking all these huge milligrams of B12 before you start just taking it because some guy on the internet says you should. That can be very dangerous. "



[edit: speculations about another poster] i hope the administration of this site differs effectively the real critics from such sick behaviour and make the neccesary arragment to keep this place as an information and education ground as it was ..

[Moderator: there's just a few of us, and like most people here we have ME/CFS too. We don't have time to personally review all of the posts; if you see something you feel violates forum rules (linked in my post below) then click "report post" to notify us. Please refrain from attacking other posters; let us handle it. Thanks.]

 

[Robin]

Hi everyone,

I've gotten some posts reported in this thread.

All arguments are welcome here, on merits. Attack each other personally is not permitted and language of such will be edited out of your post.

Here are the forum rules, please review them before posting.

Thanks,
Robin

 

[lebowski]

"Wow - it appears that Freddd or someone else had my entire post deleted"

pls edit this specuation too robin

"I asked Freddd to provide evidence for his dangerous and reckless claims, but instead I guess he chose to delete the post, or have it deleted"

what about this one ?

"Caveat emptor with this "protocol," and apparently with anything you read on this site. It doesn't appear that we are getting the complete picture, for whatever reason the people here have for wanting to suppress facts and promote unproven and potentially dangerous protocols. Even the doctors know that the first principle to follow is "do no harm." When harm starts happening and people say "keep going anyway," and then delete posts that are reporting harm, that is a very dangerous situation to be in."

if the specualtion above is allowed and not the critism of it , why would people keep on sharing what worked for them and others , and keep on helping people online , giving them an option they can chose ?

ok not about any poster but an independant thing i want to share ; there r insane people on internet tring to find targets as people or ideas , and attack their credentiblity under the name of critism with using pure speculations and distorions of what is said .. and i m hoping the site will effectively deal with such specuations ..

 

[Martlet]

Members cannot delete someone else's posts. They can only delete their own. Only Admin and moderators can delete posts and we only do so when a post is offensive. No post has ever been removed simply on the basis of an opinion.

 

[Robin]

pls edit this specuation too robin

Hi lebowski,

Thanks for bringing up your points! I'll address them and the broader moderation issue here, but ask that further discussion of forum administration and moderation be brought to the "nuts and bolts" forum. You can start a thread or join in the discussion about forum rules.

I left the "dangerous and reckless claims" in because the poster had spent a great deal of time establishing why s/he thought the claims were dangerous for some people.

The "caveat emptor" paragraph was left because it's a general claim; you'd find that on most websites where health advice is discussed. Martlet addressed the issues about deleted posts (and I addressed them in edits too.)

People are always free to share what worked with them, here. That is why this forum exists. Others are also free to make criticisms about treatments and protocols, and the original poster can address them, etc. -- that's the essence of discussion! The problem when personal references and attacks begin; threads devolve and become about an argument between two people, or dominated by one point of view. Others reading might be afraid to join in. The moderation is intended to avoid that type of scenario but obviously what constitutes as an editable phrase or word is subjective, like you point out. We try to go light with editing and not obfuscate the underlying valid discussion, over-moderating can be just as inhibiting to people wishing to join in. It's not a nice feeling to see your words edited and we really don't enjoy doing it.

I edited your post because it involved speculation about the mental health issues of another person here, and that counts as a personal attack. The criticism in blue is more directed at the forum and moderators and I left it so that it could be clarified.

Yes, there are all kinds of people on the internet! We're not here to verify claims or prove or disprove arguments, we only try to keep them from getting personal.

I hope this clarifies things, and I will leave this thread to get back on topic. If you want to talk more about moderation, forum rules, or anything else about the site, please come to "nuts and bolts".

 

[mherschen]

"Wow - it appears that Freddd or someone else had my entire post deleted"

pls edit this specuation too robin

"I asked Freddd to provide evidence for his dangerous and reckless claims, but instead I guess he chose to delete the post, or have it deleted"

what about this one ?

"Caveat emptor with this "protocol," and apparently with anything you read on this site. It doesn't appear that we are getting the complete picture, for whatever reason the people here have for wanting to suppress facts and promote unproven and potentially dangerous protocols. Even the doctors know that the first principle to follow is "do no harm." When harm starts happening and people say "keep going anyway," and then delete posts that are reporting harm, that is a very dangerous situation to be in."

if the specualtion above is allowed and not the critism of it , why would people keep on sharing what worked for them and others , and keep on helping people online , giving them an option they can chose ?

ok not about any poster but an independant thing i want to share ; there r insane people on internet tring to find targets as people or ideas , and attack their credentiblity under the name of critism with using pure speculations and distorions of what is said .. and i m hoping the site will effectively deal with such specuations ..

Lol - what on earth are you even talking about? The posts had been removed, that was not "speculation."

And you've got it completely backward, friend. The protocol is being presented without criticism, which in fact doesn't allow an informed choice. And when anyone scrutinizes it and urges caution, their posts get deleted.

There is not one shred of credible scientific evidence anywhere that 1) Hashimoto's disease is caused by B12 deficiency, as Freddd claims, or that 2) Hashimoto's disease is cured or remitted by B12, as Freddd therefore suggests in pushing his protocol. There likewise isn't any evidence that B12 "cures" chronic fatigue syndrome, as he also strongly suggests.

There is plenty of evidence, however, that B12 affects adrenal function, both scientific as well as clinical, just as there is plenty of evidence that B6 affects adrenal function by lowering cortisol and altering cortisol receptor sensitivity. There is also plenty of evidence that affecting adrenal function can affect thyroid function. The two are delicately and intimately intertwined. And yet Freddd denies those facts to push is guru "protocol."

That is irresponsible. People have gotten bad results from this protocol, whether from adrenal problems or hypermethylation. Downplaying, suppressing or otherwise minimizing reports of bad results is unethical and irresponsible. Freddd is not a doctor, nor does he have any medical training. As far as I can tell, those are facts, not "speculations." If he has either, let's see evidence of that. He doesn't seem to have any evidence for anything he says, except that he was a "systems analyst" so people should just believe him. That's a fast way to end up being harmed.

I don't function very well in kindergarten environments with "moderators" looking over your shoulder and editing every other word you say. We're all big boys and girls and should be able to have adult discussions without that kind of ridiculous, "look what he said, mommy" behavior. So lacking a more mature forum to discuss these issues, that's all I have to say on the matter.

 

[richvank]

Hashimoto's thyroiditis in CFS

Hi, all.

Hashimoto's thyroiditis is very prevalent in the CFS population. Wikland (2001) reported 40% prevalence by fine needle aspiration. Dr. Byron Hyde in Canada has also reported a high prevalence in M.E.

I think the explanation for this can be found in the work of Duthoit et al. (2001). They have suggested that proteins in the thyroid cells are attacked by the hydrogen peroxide that the cells make as part of their synthesis of the thyroid hormones T4 and T3. If the cells do not have sufficient protection against oxidative stress, this mechanism can occur. The resulting damaged proteins are detected by the immune system, and that provokes the autoimmune response against the thyroid cells.

In my hypothesis for the pathogenesis of CFS, glutathione depletion plays a major role. If glutathione becomes depleted in the thyroid gland, I suspect that the mechanism proposed by Duthoit et al. comes into play, and that produces the Hashimoto's thyroiditis.

Also in my CFS hypothesis, the depletion of glutathione removes the normal protection from B12 within the cells of the body in general, and that leads to a partial block in the methylation cycle. because B12 becomes functionally deficient. This ties back into maintaining the depletion of glutathione, in a vicious circle mechanism, which is what I believe causes CFS to be chronic.

Direct efforts to raise glutathione on a permanent basis have not generally been successful in CFS. The remedy for this situation is to restore the operation of the methylation cycle, and that in turn allows glutathione to come back up. I have suggested the Simplified Treatment Approach for doing this, and it has been found to be helpful for many PWCs. The main aspect of it is a fairly high dosage of hydroxocobalamin combined with chemically reduced forms of folate. Cofactor vitamins and minerals are also included, as is a phospholipid complex for repairing damaged cellular membranes.

freddd's protocol is similar to this in many ways, though he favors use of the coenzyme forms of B12, and at higher dosages.

There has been some discussion as to whether B12 deficiency can cause Hashimoto's thyroiditis. Based on my hypothesis, I would say that it can, because B12 deficiency can eventually lead to glutathione depletion, and that could lead to Hashimoto's thyroiditis by the Duthoit et al. mechanism.

There has also been some discussion as to whether restoring the B12 status (and I would add that this means restoring the methylation cycle function and the glutathione levels) can cure Hashimoto's thyroiditis. I would suggest that it probably depends on how far it has gone in terms of damaging the thyroid gland. If it has gone too far, I don't think that this treatment will help. On the other hand, if it is still in an early stage, I think this treatment can stop the damage mechanism, and that the thyroid might very well be able to recover.

We don't have much clinical data on this yet. In the clinical study carried out by Dr. Nathan, we had only two or three cases of Hashimoto's in the 30 patients we studied. We found that the level of thyroid antibodies went down some after treatment for a few months in one person.

In people in the internet groups who have tried this treatment, I think I've heard from three now who reported that they had been on supplementary thyroid hormones prior to starting the methylation treatment, and they found that they had to decrease or stop their supplementary thyroid hormone soon after starting the methylation treatment, with the support of their physicians, because they developed symptoms of HYPERthyroid (rapid heartbeat, sweating, insomnia). This suggests to me that the treatment stopped the damage mechanism in the thyroid, and I think that is consistent with the Duthoit et al. mechanism and my hypothesis for the pathogenesis of CFS.

There was also some disagreement about whether the thyroid gland is an organ. I note that glands are considered to be organs, according to Stedman's Medical Dictionary.

Rich

 

[Robin]

And you've got it completely backward, friend. The protocol is being presented without criticism, which in fact doesn't allow an informed choice. And when anyone scrutinizes it and urges caution, their posts get deleted.

That's not true. Your posts weren't deleted, they were put in the moderation queue until we could look them over. Go find them -- they are up there now in (most) of their glory.

I don't function very well in kindergarten environments with "moderators" looking over your shoulder and editing every other word you say. We're all big boys and girls and should be able to have adult discussions without that kind of ridiculous, "look what he said, mommy" behavior. So lacking a more mature forum to discuss these issues, that's all I have to say on the matter.

By posting here you agree to the possibility of moderation. Your participation is at your discretion.

 

[garcia]

Great post Rich! Many thanks for that.

 

[richvank]

B12 in Adrenal Fatigue

Dr. James L. Wilson in his book Adrenal Fatigue, on pp. 199-200, recommends supplementing with vitamin B12 as part of nutritional support in treating adrenal fatigue. He suggests use of a B-complex that contains 200 to 400 micrograms of B12.

Rich

 

[lebowski]

"He doesn't seem to have any evidence for anything he says, except that he was a "systems analyst" so people should just believe him"

lets take one example
"so people should just believe him" because he is a system analyst ? who said that , who claimed that ever ? .. this is my main point here ; say something untrue ( if this is done unintentionally it is just an intelligence problem and if it is done intentionally this is simply called a lie btw ) and attach a judgement to it , than the person ( this can be a very serious researcher like rich van or anyone humble enough to come to these places and help people ) will feel the need to protect himself here .. according to my understanding this is not criticism but attack .. and the defender is just one person and there can theoretically be a million attackers , this is the point i suppose the site administration can take action ( pls robin this is my last command about this here if i need to say anything else i ll be on nuts and bolts , thank u )

"We're all big boys and girls and should be able to have adult discussions without that kind of ridiculous, "look what he said, mommy" behavior. So lacking a more mature forum to discuss these issues, that's all I have to say on the matter."

looking for any kind of discussion and tring to correct the wrongs , r two different things .. the first one , without the acceptance of the other side is simply an antisocial behaviour .. to defend it like " i was just discussing it" , looks like defending rape like " i was making love, why m i in court " ..

the possibility that tomorrow some people from appendicitis community come here and question fredd with the threat of declaring him " irresponsible " if they r not satisfied , simply makes me sick .. i feel like i m gonna call mummy ..