• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

B-12 - The Hidden Story

DrD

Messages
45
Hi Fred,

Thank you for mentioning that as I will soldier on with it then :).

The information you give is really interesting and I am excited to receive my solgar methylfolate and my Jarrow b complex.

Can I ask how do you fit them in the day, do I take the b complex and folate together in the morning with the sublingual or split them through the day?

Also can I dive straight in and take them or do I need to break up the tablets. I did read about it but am a little confused as in one place it suggests breaking active folates to 1/1000th, sorry to ask when you explained so well (ill blame the fog)

My father has been very interested in this post as he has Peripheral neuropathy and has been gradually losing the feeling in his arms and legs for 20 years and has some major B12 deficiencies. I think you mentioned somewhere that this might be partially reversible?

Thank you so much for explaining :)

Jerry

hi Jerry, I am replying a bit late, but just want to encourage you. I felt severe nausea early on in the protocol. A nausea that I have never felt before. I was also "off-center" for around 6-8 weeks, meaning that my center felt off to the side when i walked or stood upright. I could not stand on 1 leg with eyes shut. I don't know if this is expected, but I can do it now after several months on the protocol. It sounds like your neurology is rewiring.
 

richvank

Senior Member
Messages
2,732
hi Rich,

Edit: Rich, if i get teh Vitamin Diags methyl pathw. panel done, could i forward the results to you as well. I don't think my General Practitioner would understand what to do with the results, frankly speaking.....

Hi, DrD.

Sure. Or you can use the following to interpret them yourself:

Interpretation of the Vitamin Diagnostics
Methylation Pathways Panel

by
Rich Van Konynenburg, Ph.D.


Several people have asked for help in interpreting the results of
their Vitamin Diagnostics, Inc., methylation pathway panels. Here are my
suggestions for doing so. They are based on my study of the
biochemistry involved, on my own experience with interpreting more
than 120 of these panel results to date, and on discussion of some of
the issues with Tapan Audhya, Ph.D., who is the director of the
Vitamin Diagnostics lab.

The panel consists of measurement of two forms of glutathione
(reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
adenosylhomocysteine (SAH), and seven folic acid derivatives or
vitamers.

According to Dr. Audhya, the reference ranges for each of these
metabolites was derived from measurements on at least 120 healthy
male and female volunteer medical students from ages 20 to 40, non-
smoking, and with no known chronic diseases. The reference ranges
extend to plus and minus two standard deviations from the mean of
these measurements.

Glutathione: This is a measurement of the concentration of the
reduced (active) form of glutathione (abbreviated GSH) in the blood
plasma. From what I've seen, most people with chronic fatigue
syndrome (PWCs) have values below the reference range. This means
that they are suffering from glutathione depletion. As they undergo
the simplified treatment approach to lift the methylation cycle
block, this value usually rises into the normal range over a period
of months. I believe that this is very important, because if
glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
that build up in the absence of sufficient glutathione to take them
out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
convert to methylcobalamin, which is what the methylation cycle needs
in order to function normally. Also, many of the abnormalities and
symptoms in CFS can be traced to glutathione depletion.

Glutathione (oxidized): This is a measurement of the concentration
of the oxidized form of glutathione (abbreviated GSSG) in the blood
plasma. In many (but not all) PWCs, it is elevated above the normal
range, and this represents oxidative stress.

Adenosine: This is a measure of the concentration of adenosine in the
blood plasma. Adenosine is a product of the reaction that converts
SAH to homocysteine. In some PWCs it is high, in some it is low, and
in some it is in the reference range. I don't yet understand what
controls the adenosine level, and I suspect there is more than one
factor involved. In most PWCs who started with abnormal values, the
adenosine level appears to be moving into the reference range with
methylation cycle treatment, but more data are needed.

S-adenosymethionine (RBC) (SAM): This is a measure of the
concentration of SAM in the red blood cells. Most PWCs have values
below the reference range, and treatment raises the value. S-
adenosylmethionine is the main supplier of methyl groups in the body,
and many biochemical reactions depend on it for their methyl
groups. A low value for SAM represents low methylation capacity, and
in CFS, it appears to result from a partial block at the enzyme methionine
synthase. Many of the abnormalities in CFS can be tied to lack of
sufficient methyation capacity.

S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
concentration of SAH in the red blood cells. In CFS, its value
ranges from below the reference range, to within the reference range,
to above the reference range. Values appear to be converging toward
the reference range with treatment. SAH is the product of reactions
in which SAM donates methyl groups to other molecules.

Sum of SAM and SAH: When the sum of SAM and SAH is below 268
micromoles per deciliter, it appears to suggest the presence of
upregulating polymorphisms in the cystathione beta synthase (CBS)
enzyme, though this may not be true in every case.

Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
methylation capacity. Both the concentration of SAM and the ratio of
concentrations of SAM to SAH are important in determining the
methylation capacity.

5-CH3-THF: This is a measure of the concentration of 5-methyl
tetrahydrofolate in the blood plasma. It is normally the most
abundant form of folate in the blood plasma. It is the form that
serves as a reactant for the enzyme methionine synthase, and is thus
the most important form for the methylation cycle. Many PWCs have a
low value, consistent with a partial block in the methylation cycle.
The simplified treatment approach includes FolaPro, which is
commercially produced 5-CH3-THF, so that when this treatment is used,
this value rises in nearly every PWC. If the concentration of 5-CH3-
THF is within the reference range, but either SAM or the ratio of SAM
to SAH is below the reference values, it suggests that there is a
partial methylation cycle block and that it is caused by
unavailability of sufficient bioactive B12, rather than
unavailability of sufficient folate. I have seen this frequently,
and I think it demonstrates that the “hijacking” of B12 is the root
cause of most cases of partial methylation cycle block. Usually
glutathione is low in these cases, which is consistent with lack of
protection for B12, as well as with toxin buildup.

10-Formyl-THF: This is a measure of the concentration of 10-formyl
tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
This form of folate is involved in reactions to form purines, which
form part of RNA and DNA as well as ATP.

5-Formyl-THF: This is a measure of the concentration of 5-formyl
tetrahydrofolate (also called folinic acid) in the blood plasma.
Most but not all PWCs have a value on the low side. This form is not used
directly as a substrate in one-carbon transfer reactions, but it can
be converted into other forms of folate. It is one of the
supplements in the simplified treatment approach, which helps to
build up various other forms of folate.

THF: This is a measure of the concentration of tetrahydrofolate in
the blood plasma. In PWCs it is lower than the mean normal value of 3.7
nanomoles per liter in most but not all PWCs. This is the
fundamental chemically reduced form of folate from which several
other reduced folate forms are made. The supplement folic acid is
converted into THF by two sequential reactions catalyzed by
dihydrofolate reductase (DHFR). THF is also a product of the
reaction of the methionine synthase enzyme, and it is a reactant in
the reaction that converts formiminoglutamate (figlu) into
glutamate. If figlu is high in the Genova Diagnostics Metabolic
Analysis Profile, it indicates that THF is low.

Folic acid: This is a measure of the concentration of folic acid in
the blood plasma. Low values suggest folic acid deficiency in the
current diet. High values are sometimes associated with inability to
convert folic acid into other forms of folate, such as because of
polymorphisms in the DHFR enzyme. They may also be due to high
supplementation of folic acid.

Folinic acid (WB): This is a measure of the concentration of folinic
acid in the whole blood. See comments on 5-formyl-THF above. It
usually tracks with the plasma 5-formyl-THF concentration.

Folic acid (RBC): This is a measure of the concentration of folic
acid in the red blood cells. The red blood cells import folic acid
when they are initially being formed, but during most of their
approximately four-month life, they do not normally import, export, or use
it. They simply serve as reservoirs for it, giving it up when they
are broken down. Many PWCs have low values. This can be
caused by a low folic acid status in the diet over the previous few
months, since the population of RBCs at any time has ages ranging
from zero to about four months. However, in CFS it can also be
caused by damage to the cell membranes, which allows folic acid to
leak out of the cells. Dr. Audhya reports that treatment with omega-
3 fatty acids can raise this value over time.

Rich
 

anne_likes_red

Senior Member
Messages
1,103
Hi Rich,

I saw you mention somewhere that using a certain anti acne drug had preceeded some peoples ME/CFS and you described how this could have affected them in relation to your hypothesis.
A different situation for me. I had several months treatment with pyrimethamine (for ocular and cerebral toxoplasmosis) immediately prior to developing (slow onset) ME/CFS. Pyrimethamine interferes with the folate cycle and I always suspected the drug might have had something to do with my health decline (more than the toxoplasmosis). I had to take pyrimethamine because I had a bad reaction to a sulfonamide drug.
I guess I have a couple of (hopefully not difficult) questions.....do you think the pyrimethamine could have contributed to a methylation problem? And does the reaction to a sulfa drug indicate I'd benefit from doing anything additional to the simlified protocol. I don't have problems with sulfur foods that I'm aware of.

Many thanks in advance :)

Anne.
 

xlynx

Senior Member
Messages
163
Location
London, UK
Hi DrD,

Thank you for the words of encouragement, I am just starting to get past the dizziness and being off balance. I still get it some days but it has reduced overall. Looking forward to see what happens over the coming weeks!

Thanks
 

brenda

Senior Member
Messages
2,266
Location
UK
David

Hi Brenda. Based on the people's experiences I've read, measuring serum B12 does not rule out deficiency

Yes I have heard this, but as I said, I had been taking Jarrow methyl b12 for a year or two, on and off. If I was able to absorb these, just letting them disolve under the tongue for 10 mins then why did I have a problem with a larger dose, I mean a serious problem. It just does not add up if my problem was deficiency. If one way was not absorbing them the second way would also be of non absorption.

Fredd

It does not appear in any of the side effects in package inserts of prescription forms of methylb12. Normally b12 deficiency causes depression and taking mb12 can relieve that, often very quickly. In antidepressant literature however, there are such warnings that the antidepressant can actually result in a period of increased suicidal tendencies for unknown reasons early in use before the antidepressant effect starts. Perhaps that is what occurred here. It is certainly not a common reaction to using an OTC sublingual vitamin sublingually.

Why would it appear on the inserts when the method advised of taking the b12, according to you, is not sufficient to absob it properly, which you are very aware of, so I do not understand why you are using this as an answer. I am not depressed thankyou.


So methylb12 causes such a massive improvement in immune funtioning immediately that it causes a Herx reaction?

I did not mean this, I meant that those who have been ill with especially with Lyme for a long time know the difference between Herxes and having the adrenals and thyroid stressed too much. There is an implication from a number here that those who have a very bad reaction and complain to you about it and that you pushed them on despite the clear signals their bodies were giving, that they are not being 'tough enough' and if they continued then they would improve like the others here, who I am very happy for, when in fact the ones who have stopped due to the extreme reaction, are in fact the sickest ones and who have therefore had much experience in doing things which initially made them worse especially when they have Lyme. After a lifetime of sickness, extreme in the past 10 years, I have a very clear understanding of my body and what works and what does not and I am more than happy to go though hell if it improves me and have done so in the past when I have been killing Candida.

If it is Lyme disease you have for instance and b12 kills the Lyme causing bacteria so quickly and effectively I would be inclined to let my doctor know about the tremendously effective treatment for Lyme. It would constitute a breakthrough treatment that needs to be studied. It's not a claim I have ever seen before. If this is not what you are claiming, what are you claiming?

Less of the sarcasm please. I am claiming the same as others here have claimed, that a large dose of methyl b12 has a negative effect on the endocrine system of some people and to continue is harmful.

What dose of mb12 did you actually take? A 1000mcg used sublingually once? twice? How many absorbed estimated MCGs are we actually talking about here?

Before starting the protocol I had gone through about 120, 5.000 mcg lozenges at 2.500 mcg a time over one and a half years, then starting the protocol I took 5.000 once a day under my lip for three days. So how can you say ;

severe and prolonged b12 deficiency

It sounds like you will say anything to back up your theories, ignoring the exprience of others.

Use your doctor for your concerns and to check and see what is dangerous compared to what is uncomfortable. There is a substantial difference.

Too late. You did not tell me this when I was going through it.


rich

when people first started using it 3 years ago, there were a small number of them who indeed had rather severe adverse effects. I have posted these in the past on this forum. This is the reason I insist that people should be working with their physicians while on this treatment. In some cases, the people involved had other comorbid conditions that were apparently responsible for the adverse effects, including autonomous multinodular goiter and autoimmune diseases.

Thanks for this responsible attitude. I did tell Fredd I had an autoimmune condition.

It just seems to me that going more slowly is a wiser way to proceed at our current state of knowledge. Also, I think people are more likely to stick with the treatment if they do it at a level where the symptoms are tolerable. If a person stops the treatment because it is intolerable, there is no chance that the treatment will help them. If they continue with it, success is not guaranteed, but at least there will be the opportunity to see if the treatment will in fact help them.

Thanks again for the wise voice of caution. Thanks for the additional information about the lab test in the Netherlands.

Would you say that this lab is better for me than the testing at Metametrix having mercury poisoning Hashimotos and Lyme as far as hair analysis and organic acids is concerned as well as the test you mentioned?
 
Messages
84
"I am claiming the same as others here have claimed, that a large dose of methyl b12 has a negative effect on the endocrine system of some people and to continue is harmful"

"methyl b12 has a negative effect on the endocrine system " this needs proof .. any lab evidence or anything in literature to support this speculation which is given here in the form of FACT ??

"and to continue is harmful" same here .. r u a doctor or a researcher or read anything which u can give a link here that supports this speculation given as fact again .. and why do u talk about ur uneducated speculations as scientific facts ? is this a symptom of lyme brain inflammation ? ( just asking ur opinion about it ,not a scientific link this time )


"Use your doctor for your concerns and to check and see what is dangerous compared to what is uncomfortable. There is a substantial difference.
Too late. You did not tell me this when I was going through it. "

so what now , should he apologize ? or give back the consultation fee he didnt get from u ? have u given anything for the service and how can u complain about a free service ? and didnt u as an adult know that he is not a doctor and not responsible of ur treatment ?

any bad reaction in a system can occur when the current condition of the system is changed with any intervention depending on the particular condition of the system .. for example if u take b12 while having a heart attack , the b12 which cant kill u normally can do it .. or anyone coming to the room closing a window can do that too ( while u r having the attack ) , and as u might know normally closing windows do not kill people .. so if u ask someone " what shall i do when it gets cold in the room " and he says " close the windows " and u do it while u r having ur heart attack , he is not ur killer .. and he doesnt have to think that u can do it during a HA .. so u can have any kind of extraordinary bad reaction depending on ur personal situation to b12 and fredd or anyone else cant predict this online , this is the reason people go to drs .. as an adult u r presumed to be knowing these and i guess fredd talked in a generalised way about the effects of b12 .. i think this needs another example here ( or an hundred but i have not that kind of energy and motivation ) .. if ur stomach is bleeding , and u take vit c in a large dose , u cant blame the guy adviced u to take it for ur flu ..

and i shall copy paste this post when harmed people from apendicitis community come and complain
 
Messages
84
"Would you say that this lab is better for me than the testing at Metametrix having mercury poisoning Hashimotos and Lyme as far as hair analysis and organic acids is concerned as well as the test you mentioned? "

with the current expirience Rich , to say that this lab is better or not , may give u a big headache , u may have to write pages and pages of defence argument ..
 
Messages
84
one more thing i have to mention here ,

let it be medical or car repair opinion , one may give an hundred advice and 99 of them help people very much and the 1 exception may break something .. and if the person is accused , held responsible for that 1 situation he will not be able to help the other 99 people anymore .. so there must be an acceptable error margin or the only thing can be questioned should be the good intentions not the success ..

and for example a very good dr can cure someone while the average drs cant in some situation , it is the patients responsibility to find the dr who can cure the hard case and there should not be an obligation to be the best dr who can cure the illness only the best can ( which is also theoretically impossible) ..

" dr hause could cure me but u couldnt so now u r responsible of my bad health, it s ur fault .. " this sounds stupid i think , or it should, otherwise there can be only one dr responsible of 6 billion people ..

so i think especially when considered that he is not a dr and didnt claim so , fredd ( or anyone online ) must have some marge to make errors without being accused blamed or insulted .. and site rules msut protect people of such abuse ..
 

DrD

Messages
45
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 :)



Thanks all for the most interesting discussion. I think the issue of gut health is one area that we tend to overlook. Without a healthy gut and proper gut permeability, the oral supplementation and absorption issue will interfere with the protocol recovery mechanism. All supplemenation is obviously not sublingual or injected, so we cannot overlook this. As everyone is well aware, the gut issues and b12 def. are often correlated (as in my case).

regards
 

DrD

Messages
45
Hi, DrD.

Sure. Or you can use the following to interpret them yourself:

Interpretation of the Vitamin Diagnostics
Methylation Pathways Panel
Rich

hi Rich or Freddd,

Having gone through the large discussion on Hashimoto's and autoimmune disfunction/adrenals in the past few weeks, do you think that the b12 deficiency (the last 4-5 years the b12 levels were dropping, until the crash several months ago) could have caused autoimmune hepatitis. The liver specialist, ,after years of tests thinks it might be autoimmune hepatitis, but outright antibody tests (titers) are still within range. So he is not sure. He thinks it could be early stage. I am non-Hashimoto's hypo-thyroid, and he stated that the two are correlated (thyroid disorders and autoimmune hepatitis) in some of the cases he has seen in the past.

If the autoimmune disfunction regresses as I continue on the protocol, in theory the inflammation should go down. Right now, my liver has not sustained any damage. I am only concerned because if the inflammation continues for the next 20 or 30 years, I might have a failing liver at some point.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
hi Rich, Yes every conceivable liver test has been run (copper, Wilson's, even some very very rare disorders). I am taking many of the Freddd protocol supplements right now. I don't have CFS, but had a major b12 deficiency crash that put me down several months back. I am doing much better on the Freddd protocol (inlcuding methyl injections). The liver doc is stumped. (has been for the last 4 years). I am on all the b vitamins in accordance w/ the protocol. I also started SAM-e which is supposed to help the liver as well. I was on Milk Thistle for a long time several years back, but it did not lower the AST or ALT. Also, someone mentioned fish oil causing inflammation. We are not sure, but large doses of fish oil appear to raise my ALT and AST enzymes for some reason. I will look into the selenium and ALA. thanks

Edit: Rich, if i get teh Vitamin Diags methyl pathw. panel done, could i forward the results to you as well. I don't think my General Practitioner would understand what to do with the results, frankly speaking.....

Hi DrD,

I had elevated liver enzymes for approximately 7 years following the begining of the 16 year crash in 1987. My liver enzymes were normal by the time I had my gall bladder out. My doctors never figured out any cause and I know of no reason they went away. The one thing my doc did was to take me off the blended opioid products I had been on for some years (200/month) and put me on straight oxycodone with no aceteminophen.
 

DrD

Messages
45
Hi DrD,

I had elevated liver enzymes for approximately 7 years following the begining of the 16 year crash in 1987. My liver enzymes were normal by the time I had my gall bladder out. My doctors never figured out any cause and I know of no reason they went away. The one thing my doc did was to take me off the blended opioid products I had been on for some years (200/month) and put me on straight oxycodone with no aceteminophen.

hi Freddd, I forgot to mention that I am on no prescription medication at this point, except for the levox. for the thyroid. Perhaps the enzymes might start dropping after a year or two as I continue on this protocol. The enzyme rise was coindicent with the drop in b12 levels.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
David



Yes I have heard this, but as I said, I had been taking Jarrow methyl b12 for a year or two, on and off. If I was able to absorb these, just letting them disolve under the tongue for 10 mins then why did I have a problem with a larger dose, I mean a serious problem. It just does not add up if my problem was deficiency. If one way was not absorbing them the second way would also be of non absorption.

Fredd



Why would it appear on the inserts when the method advised of taking the b12, according to you, is not sufficient to absob it properly, which you are very aware of, so I do not understand why you are using this as an answer. I am not depressed thankyou.




I did not mean this, I meant that those who have been ill with especially with Lyme for a long time know the difference between Herxes and having the adrenals and thyroid stressed too much. There is an implication from a number here that those who have a very bad reaction and complain to you about it and that you pushed them on despite the clear signals their bodies were giving, that they are not being 'tough enough' and if they continued then they would improve like the others here, who I am very happy for, when in fact the ones who have stopped due to the extreme reaction, are in fact the sickest ones and who have therefore had much experience in doing things which initially made them worse especially when they have Lyme. After a lifetime of sickness, extreme in the past 10 years, I have a very clear understanding of my body and what works and what does not and I am more than happy to go though hell if it improves me and have done so in the past when I have been killing Candida.



Less of the sarcasm please. I am claiming the same as others here have claimed, that a large dose of methyl b12 has a negative effect on the endocrine system of some people and to continue is harmful.



Before starting the protocol I had gone through about 120, 5.000 mcg lozenges at 2.500 mcg a time over one and a half years, then starting the protocol I took 5.000 once a day under my lip for three days. So how can you say ;



It sounds like you will say anything to back up your theories, ignoring the exprience of others.



Too late. You did not tell me this when I was going through it.


rich



Thanks for this responsible attitude. I did tell Fredd I had an autoimmune condition.



Thanks again for the wise voice of caution. Thanks for the additional information about the lab test in the Netherlands.

Would you say that this lab is better for me than the testing at Metametrix having mercury poisoning Hashimotos and Lyme as far as hair analysis and organic acids is concerned as well as the test you mentioned?



Hi Brenda,

Yes I have heard this, but as I said, I had been taking Jarrow methyl b12 for a year or two, on and off. If I was able to absorb these, just letting them disolve under the tongue for 10 mins then why did I have a problem with a larger dose, I mean a serious problem. It just does not add up if my problem was deficiency. If one way was not absorbing them the second way would also be of non absorption.
...
Before starting the protocol I had gone through about 120, 5.000 mcg lozenges at 2.500 mcg a time over one and a half years, then starting the protocol I took 5.000 once a day under my lip for three days.
...
It just does not add up if my problem was deficiency. If one way was not absorbing them the second way would also be of non absorption.
...
Why would it appear on the inserts when the method advised of taking the b12, according to you, is not sufficient to absob it properly, which you are very aware of, so I do not understand why you are using this as an answer. I am not depressed thankyou.

So, Clearly your absorbtion increased by some percentage, perhaps from several percent to 15+ percent, so we are looking at a dose related situation, where you started absorbing some hundreds of mcg more at a time. It would appear that the increase in absorbtion crossed some threshold, perhaps supplying enough unbound b12 to penetrate into parts of your system not being reached before. For as much reaction as you had you were clearly maintaining a funtional deficiency despite having made some use of the Jarrow previously, though obviously not as effectively. Also, the research literature speaks of higher doses having more effect. Clearly you have demonstrated that. It did have more effect. That it had so much effect would appear to indicate that the amount you were absorbing before was less than your body could have utilized, so that you were still in a deficiency condition despite having taken b12 for some while and having "normal" tests. Rich explained about the destruction of B12.

As regards package inserts, often lots of people are tested in the various studies so even things which have only a small percentage reaction do occur. None of the research on mb12 I have read indicates most any of the reactions we see, commonly or uncommonly. This includes high dose injection studies, "normal" dose injections (1000mcg) or oral amounts. I can't account for the complete lack of recognition of the many startup symptoms, common or uncommon, that we often see, Traditionally they are considered "placebo" effect with b12 for reasons not entirely clear but appear to have to do with the history of the inactive b12s.


From your earlier post:
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?)

Current post:
I did not mean this, I meant that those who have been ill with especially with Lyme for a long time know the difference between Herxes and having the adrenals and thyroid stressed too much. There is an implication from a number here that those who have a very bad reaction and complain to you about it and that you pushed them on despite the clear signals their bodies were giving, that they are not being 'tough enough' and if they continued then they would improve like the others here, who I am very happy for, when in fact the ones who have stopped due to the extreme reaction, are in fact the sickest ones and who have therefore had much experience in doing things which initially made them worse especially when they have Lyme. After a lifetime of sickness, extreme in the past 10 years, I have a very clear understanding of my body and what works and what does not and I am more than happy to go though hell if it improves me and have done so in the past when I have been killing Candida.

If you are not saying that the B12 was causing a Herx reaction I don't understand why you even brought it up in the previous post. I'm confused about what you are actually trying to say.

And lack of B12 is associated with autoimmune problems. It's very common.

It sounds like you will say anything to back up your theories, ignoring the exprience of others.

I'm not sure what you mean my this remark as your reactions, while more extreme than many, are not outsde the realm of mb12 startup symptoms. Your experience appears to back up the theories quite thoroughly. We happen to disagree about some of the interpretation of the causes of the reactions, not the reactions.

Why would it appear on the inserts when the method advised of taking the b12, according to you, is not sufficient to absob it properly, which you are very aware of, so I do not understand why you are using this as an answer. I am not depressed thankyou.

As regards your remarks on suicidal reaction, it happens under a variety of circumstances was all I was trying to say, the most common one being when starting an antidepressant. Also as a rebound of stopping some medications too quickly. People starting up on mb12 have often have had all sorts of neuropsyc changes from the deficiencies including mood and personality changes, hallucinations, cognitive and memory changes and so forth. Starting on mb12 can cause changes in all those things yet again. It's unfortunate you had such an extreme reaction of an unusual sort.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Freddd/Question

Hi Fredd/Rich/Others with B12 knowledge:

I have reserved a book at my library that I hope to pick up soon. It is entitled "Could It be B12? - An Epidemic of Misdiagnoses". Have you read it? Do you recommend it?

Thanks!

Maxine
 

dmholmes

Senior Member
Messages
350
Location
Houston
Hi Fredd/Rich/Others with B12 knowledge:

I have reserved a book at my library that I hope to pick up soon. It is entitled "Could It be B12? - An Epidemic of Misdiagnoses". Have you read it? Do you recommend it?

Thanks!

Maxine

I've read it. It's a little outdated as far as treatment goes, but still worth reading. The author started this thread where a lot of people go for B12 deficiency help. You may recognize a few people there :Retro smile:.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
Thats a good questions. It would be nice if all the protocols had folders with this info. Or maybe a section where they are all listed and when you click on the protocol you would get folders that had details of how to follow the protocol, another folder for did not help and how., did help and how. There could also be folder within the particular protocol section that had some tweaked version.................well something along these lines to keep things more organized and easy to compare various bits and pieces of info when you are trying to decide on what you want to try.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd/Rich/Others with B12 knowledge:

I have reserved a book at my library that I hope to pick up soon. It is entitled "Could It be B12? - An Epidemic of Misdiagnoses". Have you read it? Do you recommend it?

Thanks!

Maxine

Hi Maxine,

By all means read it. The therapy suggested is the old traditional protocol of one injection of hydroxyb12 each 3 months after several in rapid succession which is quite ineffective for most anything except possibly correcting macrocytosis. However, the recognition of what constitutes b12 deficiency is the important part of this book. It expands the definition considerably from the traditional definition. It does not expand it as completely as the list of symptoms, signs and co-correlates posted earlier on this thread, but it does follow a young nurse's story of having to fight the establishment to get diagnosed and treated.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
hi Freddd, I get mine from University Pharmacy as well. If you need any input on my batches pls let me know. I notice much less acne with these Univ. Pharm. batches (20mg/ml) then with the McGuff batches (5mg/ml). With the Univ. Pharm. batches i inject 40.0 units (8mg), 3 times a week.

Hi DrD,

Very interesting. If you were to keep track of qualitative differences between batches and even as a batch ages, and whether it is foil wrapped and refrigerated or not, I would find that interesting. As a hypersensitive to many things concerning b12 I may have reactions not duplicated by other people. I would be very interested in what your reactions are.