B-12 - The Hidden Story

[surfbh]

RichVank

I believe the root of my problem lies in my leaky gut/celiac. I have used a combo of GHRH (growth hormone releasing hormone) aka Modified GRF 1-29 aka CJC 1293 aka CJC 1295 without DAC along with a GHRP (growth hormone releasing peptide) GHRP-6 or Ipamorelin. This has helped with my food allergies and inflammation/immunity due to them drastically increasing growth hormone and IGF.

Now I am taking IGF-LR3 and IGF-2, both found in colostrum and both will actually grow the intestines. I have read of several peoples reports of fixing their gut with these 2 peptides. I have been taking them for a few days, suddenly a wisdom tooth is coming in, I'm 38. Also, my guts go crazy from 15 min to several hours after injection. So my question is, what do you think gut issues like mine play in methylation/energy in the body? I know they are huge in immunity and I know the "possible cancer ramifications of IGF use". Also, the GHRH's, GHRP's and IGF's regrow nervous tissue in case Freddd is listening.

 

[aquariusgirl]

surfbh, can u say where you get these peptides, injectables? PM me if you need to.
what you said reminds me that Peterson is apparently using rifaximin, a gut specific abx, followed by IVIG to kill gut bugs and and then boost immunity to maximise the benefit...

 

[surfbh]

Clear your PM's, Wasted my time writing you a detailed PM.

 

[richvank]

RichVank

I believe the root of my problem lies in my leaky gut/celiac. I have used a combo of GHRH (growth hormone releasing hormone) aka Modified GRF 1-29 aka CJC 1293 aka CJC 1295 without DAC along with a GHRP (growth hormone releasing peptide) GHRP-6 or Ipamorelin. This has helped with my food allergies and inflammation/immunity due to them drastically increasing growth hormone and IGF.

Now I am taking IGF-LR3 and IGF-2, both found in colostrum and both will actually grow the intestines. I have read of several peoples reports of fixing their gut with these 2 peptides. I have been taking them for a few days, suddenly a wisdom tooth is coming in, I'm 38. Also, my guts go crazy from 15 min to several hours after injection. So my question is, what do you think gut issues like mine play in methylation/energy in the body? I know they are huge in immunity and I know the "possible cancer ramifications of IGF use". Also, the GHRH's, GHRP's and IGF's regrow nervous tissue in case Freddd is listening.

Hi, surfbh.

Thanks for describing your growth hormone related treatment. This is new to me, and it sounds very interesting.

One thing I might mention is that according to the GD-MCB hypothesis, the deficit in growth hormone in ME/CFS is due to glutathione depletion in the pituitary gland. Growth hormone is among the class of secretory proteins that have cystine disulfide bonds stabilizing their tertiary structure. For the proteins in this class to be properly formed, there must be sufficient glutathione and a normal ratio of reduced to oxidized glutathione in the cytosol of the cells that produce them.

With regard to possible relationships between the digestive system and the partial methylation cycle block combined with glutathione depletion and draining of the folates from the cells, I think the interactions can go in both directions:

First, how does the partial methylation cycle block, etc., affect the digestive system?

We know from the experience of many PWCs using the baking soda--burp test and salutary results of betaine-HCl supplementation that there is low stomach acid in many cases of CFS. According to the GD-MCB hypothesis, this is due to mitochondrial dysfunction in the parietal cells, which in turn results from glutathione depletion and the partial methylation cycle block.

We also know that digestion is often poor in PWCs. According to the GD-MCB hypothesis, this results from deficient secretion of pancreatic enzymes and/or bile. These in turn result from the lack of sufficient stomach acid to signal the need for the pancreatic enzymes and bile, and from deficiency of glutathione, which is necessary for bile production in the liver.

We also know that there is dysbiosis in most cases of CFS, as revealed by comprehensive stool testing. The lack of stomach acid allows pathogens that come in with the food to survive passage through the stomach and into the gut. In addition, there are abnormalities in peristaltic transport and cleaning of the gut, which allows small intestinal bacterial overgrowth (SIBO). These abnormalities are likely due to deficiencies in production of serotonin and acetylcholine by the gut, which in turn are due to the partial methylation cycle block.

We also know that there is leaky gut, which results from damage to the wall of the gut. The gut does not have its normal protection against oxidative stress, toxins and pathogens as a result of glutathione depletion. Also, the lack of folate inhibits the production of new DNA and RNA, which are needed for making new cells to replace those that die and are sloughed off the lining of the gut. Finally, the immune system is dysfunctional because of the lack of glutathione and folates, which are needed to support cell-mediated immunity in particular. Glutathione is also needed to control the oxidative stress generated by the immune system when it produces inflammation to attack pathogens.

In the other direction, problems in the digestive system can impact the methylation cycle, folate metabolism, and glutathione. For example, if the digestive system is unable to absorb enough B12, such as because of pernicious anemia or because of celiac disease, the methylation cycle will not have enough methylcobalamin as a cofactor for methionine synthase. If the digestion and absorption of other nutrients is poor, the other vitamins, minerals, amino acids and fatty acids needed by these parts of the metabolism can also become deficient. If dysbiosis is present, the gut flora may not be able to produce nutrients that it normally supplies for the body, including active folates. If there is leaky gut, the immune system will be occupied producing antibodies against food proteins, and this will take supplies and energy that may be needed for these other parts of the metabolism.

As a result of this two-way interaction, if the digestive system has serious issues, it will likely be necessary to deal with them directly, while treating to lift the partial methylation cycle block. I note that Dr. Amy Yasko emphasizes this in her full treament program, in which gut support is one of the early interventions.

Best regards,

Rich

 

[richvank]

Does anyone have a reliable source to buy PERQUE B12? All the websites I used to buy it from no longer carry Perque products.

Hi, TheMoonIsBlue.

Perque B12 is available from www.holisticheal.com You might also want to consider the Hydroxy B12 MegaDrops, from the same source, which are more cost-effective. Dr. Amy Yasko has been encouraging people to use this newer product.

Best regards,

Rich

 

[aquariusgirl]

Hi. Sorry about that. Very frustrating. I've been there. I cleared my mail box.

I need to figure out how to delete messages from my inbox quickly. Right now, it's a laborious 3-step process.

 

[Sushi]

Hi, TheMoonIsBlue.

Perque B12 is available from www.holisticheal.com You might also want to consider the Hydroxy B12 MegaDrops, from the same source, which are more cost-effective. Dr. Amy Yasko has been encouraging people to use this newer product.

Best regards,

Rich

Hi, TheMoonIsBlue,

I also just tried to order the Perque and couldn't find it and went with HolisticHeal's B12 MegaDrops. I like them better. Feels like the liquid get more absorbed sublingually than the tabs. Even though I tried not to, some of the Perque's went down the hatch!

Sushi

 

[aquariusgirl]

If I want to nebulise b12 and glutathione, does the B12 need to be preservative-free?
I was wondering if I could use my injectable hydroxy b12.
anyone ordered drops from a compounding pharmacy for this purpose?
do they contain preservatives?
TIA

 

[Sushi]

If I want to nebulise b12 and glutathione, does the B12 need to be preservative-free? I was wondering if I could use my injectable hydroxy b12.
anyone ordered drops from a compounding pharmacy for this purpose? do they contain preservatives?
TIA

Hi aquariusgirl,

Why not call Key Pharmacy in Washington and ask them? http://www.keynutritionrx.com/ They are very knowledgeable. When I was nebulising the two together I did order specially from a compounding pharmacy, but I don't remember whether there were preservatives. The trick is to get them to compound it in a dilution that allows you to give the dose you want. It is usually compounded for higher doses.

Sushi

 

[aquariusgirl]

Yeah, I did order from them in the past.
I may just use yasko's drops...it gets too complicated otherwise...10 different Rxs for this that & the other.

 

[MDL]

what you said reminds me that Peterson is apparently using rifaximin, a gut specific abx, followed by IVIG to kill gut bugs and and then boost immunity to maximise the benefit...

Hi Aquarius girl,

That is interesting news---I hope he will report on his findings. Rifaximin is a drug designed to bring down the level of hydrogen sulfide in the gut. It was recently found to be reasonably effective for irritable bowel syndrome and is being tested by the V.A. for Gulf War Veterans, where the chief requirement for participation in the study, besides being a veteran, is having a diagnosis of ...chronic fatigue syndrome!

 

[Glynis Steele]

Hi Aquariusgirl,

what you said reminds me that Peterson is apparently using rifaximin, a gut specific abx, followed by IVIG to kill gut bugs and and then boost immunity to maximise the benefit...

I found your post very interesting. I've put a new post on the d-lactic thread in the recent research section, regarding d-lactic acidosis, lactobacilli overgrowth &
b12 deficiency, as a consequence of the overgrowth, it you are interested. I can re-post it here, if anyone is interested.

Glynis

 

[TheMoonIsBlue]

Hi, I've been skimming through the posts, what my brain would allow. Could I ask a few questions:

Is it BEST (or critical?) for a person to take all Three forms of B-12- Methyl, Hydroxy, and dibencozide? Would only be taking one form be harmful in any way, or just not produce results?

Also I do not have the MTHFM Polymorphism.....I took active Folate's for several years, just recently ran out. But I never felt they were helping honestly, I just took it on a good faith basis. Since I don't have the MTHFM Polymorphism,will "regular" Folic Acid work just as well for me? Or I guess.....do I really need to supplement with Folic Acid at all?

I just restarted the Sublingual Perque B12 and already feel like I need to stop it for a while.....having an exacerbation of several symptoms.

I can not tolerate "B-Complexes" as they leave me wired, agitated, ill and unable to sleep. I've tried so many......I think they all just have too high levels of the vitamins for me to tolerate.

A few months ago I had my B-12 level measured and it was HIGH even though I had not been supplementing with any B-12; do you think the Folate I was taking could have caused my high B-12 serum level? I've read that Folic Acid can mask a B12 deficiency. I was taking 1/2 of Metagenics Folapro (400mcg).

P.S. You can get Perque B12 from PureFormulas.com or VitalBee.com;thanks for mentioning HolisticHeal.com I forgot about site as another source for Perque. I see that ProHealth has their own Hydroxy B12 also.

P.P.S. I should mention that I am a vegetarian so I would only imagine that my requirement for B-12 is higher due to this fact?

Sorry so long, I always only mean to write a few lines!

Thank You!

 

[richvank]

Hi, Moon.

***My responses are at the asterisks below:

Hi, I've been skimming through the posts, what my brain would allow. Could I ask a few questions:

Is it BEST (or critical?) for a person to take all Three forms of B-12- Methyl, Hydroxy, and dibencozide? Would only be taking one form be harmful in any way, or just not produce results?

***This depends on the particular person's genetic makeup. To find this out, genetic testing is required. I have suggested the socalled "Simplified Treatment Approach" in part to avoid having to do the testing, to keep the treatment simpler, and make it less costly. In the simplified approach, I recommend using sublingual hydroxocobalamin. This works well for most PWCs. If there is no response, then I suggest moving to methylcobalamin, but starting at low dosages, particularly if a high body burden of mercury is known or suspected, because in theory, methylcobalamin can methylate mercury, which makes it easier for it to move into the brain. Some people do need the methylcobalamin form, because they do not have enough methylation capacity to convert hydroxocobalamin to methylcobalamin, which is the form needed to lift the partial block of the methylation cycle.

***If a person has an inborn error of metabolism in the intracellular B12 processing enzymes, such as freddd has reported having, then taking large dosages of both methylcobalamin and adeosylcobalamin can help, according to his experience. This type of mutation is reported to be rare, however.

Also I do not have the MTHFM Polymorphism.....I took active Folate's for several years, just recently ran out. But I never felt they were helping honestly, I just took it on a good faith basis. Since I don't have the MTHFM Polymorphism,will "regular" Folic Acid work just as well for me? Or I guess.....do I really need to supplement with Folic Acid at all?

***The active forms of folate (5-methyl tetrahydrofolate, aka FolaPro, aka Metafolin, and folinic acid) are still preferable, even without the MTHFR polymorphisms. The problem with folic acid is that some people are not able to convert it to the active forms of folate very rapidly. There is a factor of 5 difference in the rate of the reaction that converts folic acid to dihydrofolate, which is the first step, among different people. Dr. Vinitsky's protocol uses folic acid, but he uses a very large dosage, perhaps because the conversion can be slow. There is some indication in the literature (not proven) that high levels of unreacted folic acid can suppress the activity of the natural killer cells, which are one of the defenses against cancer. So I continue to suggest use of the active forms of folate. And taking folate together with B12 is the key to lifting the partial methylation cycle block.

I just restarted the Sublingual Perque B12 and already feel like I need to stop it for a while.....having an exacerbation of several symptoms.

***This is actually a good sign. When the partial methylation cycle block starts to lift, the detox system comes back into more normal operation and begins mobilizing toxins into the blood. That produces some unpleasant symptoms.

***Gotta go! More later.

***Rich

I can not tolerate "B-Complexes" as they leave me wired, agitated, ill and unable to sleep. I've tried so many......I think they all just have too high levels of the vitamins for me to tolerate.

A few months ago I had my B-12 level measured and it was HIGH even though I had not been supplementing with any B-12; do you think the Folate I was taking could have caused my high B-12 serum level? I've read that Folic Acid can mask a B12 deficiency. I was taking 1/2 of Metagenics Folapro (400mcg).

P.S. You can get Perque B12 from PureFormulas.com or VitalBee.com;thanks for mentioning HolisticHeal.com I forgot about site as another source for Perque. I see that ProHealth has their own Hydroxy B12 also.

P.P.S. I should mention that I am a vegetarian so I would only imagine that my requirement for B-12 is higher due to this fact?

Sorry so long, I always only mean to write a few lines!

Thank You!

 

[richvank]

***Hi, Moon.

***O.K., I'm back!

I can not tolerate "B-Complexes" as they leave me wired, agitated, ill and unable to sleep. I've tried so many......I think they all just have too high levels of the vitamins for me to tolerate.

***What you've described sounds like excitotoxicity. This is caused by too high a ratio of glutamate to GABA in the brain. Dr. Amy Yasko has suggested several things that might help in her book. The first thing is to adjust the diet to avoid things that are high in glutamate. MSG and hydrolyzed vegetable protein are two of the main ones, but there are many others as well. She has a list of them in her book. Beyond that, she also lists several supplements that might help. These incude GABA, theanine, magnesium, taurine, topical progesterone, Valerian root, and some others.

A few months ago I had my B-12 level measured and it was HIGH even though I had not been supplementing with any B-12; do you think the Folate I was taking could have caused my high B-12 serum level?

***This is found in many PWCs, and is misleading. It actually means that the cells are not able to use B12 properly. That is, there is not an absolute B12 deficiency, but there is a functional deficiency of B12. No, folate will not cause this. It is caused by the cells in the body exporting B12 back to the blood, because they are unable to use it properly. Most of the B12 in the blood is normally bound to haptocorrin and is not directly available to the cells in general, but is eventually absorbed by the liver, put back into the gut via the bile, and is thus available to be reabsorbed and offered to the cells via binding to transcobalamin. I think this is a recycle loop to conserve precious B12 for times when it is not coming in much with the available diet, i.e. when not much animal protein is being eaten.

I've read that Folic Acid can mask a B12 deficiency. I was taking 1/2 of Metagenics Folapro (400mcg).

***That's true. Doctors are trained to look for macrocytic anemia (i.e. red blood cells being larger than usual, but fewer in number) as the indicator of B12 deficiency. This is actually caused by low folate in the cells of the bone marrow, but low B12 can cause draining of folate from the cells via the "methyl trap" mechanism, so either a folate deficiency or a B12 deficiency can cause macrocytic anemia. But if folate is high enough from supplementation, the red blood cells can be normal, even though B12 is deficient. Doctors really should be trained to run a urine test for methylmalonate (or methylmalonic acid) to see if there is a functional B12 deficiency, but this hasn't happened yet, in general, as far as I know.

P.S. You can get Perque B12 from PureFormulas.com or VitalBee.com;thanks for mentioning HolisticHeal.com I forgot about site as another source for Perque. I see that ProHealth has their own Hydroxy B12 also.

P.P.S. I should mention that I am a vegetarian so I would only imagine that my requirement for B-12 is higher due to this fact?

***B12 is not made by plants. It is made by bacteria, including some that occupy the digestive tracts of animals. Humans get most of their B12 from consumption of animal-based foods. Vegetarian diets are usually low in B12.

Sorry so long, I always only mean to write a few lines!

Thank You!

***Best regards,

***Rich

 

[TheMoonIsBlue]

Hi Rich, I just wanted to say THANK YOU THANK YOU THANK YOU for your very detailed reply! I, and I'm sure so many others, really appreciate all the time and effort you are dedicating to our "cause". I will likely add in a small amount of Methyl B-12 in addition to Hydroxy B12 and....guess I'll have to order more Folapro! I can't take Sam-E due to it causing G.I. distress.


Thanks again.

 

[Freddd]

Hi Everybody,

I'm glad to be back. I had to take a break because of too many family problems I had to deal with. My health almost couldn't be better. I will be glad to answer questions that I have missed during my absence and if you post and ask again with a link to your earlier full posts I will get to it quicker than in review of what has happened over the past few months. I am posting a look back on my last nearly 8 years to show you what the stakes are for which we are actually playing; life, health and wealth. These are the real consequences of what we are speaking. One thing I don't mention below is that my eyes were unable to focus well enough to read books or screens much of the time up to May 21, 2003. My wife had read me THE HOBBIT and the entire Lord of the Rings trilogy because I was unable to read it myself. The saddest thing of all is the sheer hell I put her through with 17 years of physical, neurological, emotional and personality disabilities. Those 17 years cost me the years of my children growing up, my marriage, my business, building the solar house I had designed and almost everything I could do. While I have recovered pretty much, what was gone is gone and can't be reclaimed. I am attempting to build a new business, to rebuild relationships with my children, and have a good relationship with a woman and find some friends, most of whom went their way with others as I could no longer participate, not even to play a few hands of bridge.

While I might say 95% recovery or so across the board with most symptoms 100% gone and some remaining, almost nothing unchanged what does that actually mean in indirect measures? I am rehabilitated. I can work up to and maintain whatever level of aerobic fitness I am willing to give the time to. I can walk 5 miles and do that each day. I can work in the garden with pick and shovel for hours at a time. I can go hiking. I would even consider going skiing again if I had the money and medical insurance as I cant afford to get injured. Im not in a wheel chair. Im not falling down. I can balance on one foot. I havent had an accident of incontinence in 8 years. I dont have acid rising into my throat each night, I dont vomit daily, I havent had a cold in 7 years. I havent been sick in 7 years except for H1N1 flu last year and it was mild. I havent had a pneumonia or two. I dont have multiple chemical sensitivity any more. I dont have daily chronic headaches, muscle spasms all over uncontrollably, no more IBS, CFS, FMS etc. I have a life again. Now for the quantifiable.

As my 8th anniversary my 5 star mb12 startup approaches I have reached the 7th anniversary of the beginning of large savings on my medical and pharmacy costs. My pharmacy costs went down about $1000/month of previous costs to that next year and stayed down. Over the next year or so my physician visits fell off more than 50% to the minimum needed to maintain my remaining prescriptions and my tests fell off about 90%. In the past 7 years I have saved approximately $100,000 which is the difference between being homeless and having a place to live. I feel decent at least instead of in continual misery.


Applying a little game theory would appear to indicate that we as a country cant afford to ignore the possibility that what I am saying is essentially correct. For instance b12 deficiency has to be ruled out for a diagnosis of MS, and the test is applied to serum but not CSF despite the KNOWN deficiency in the CSF of those with MS, there is probably not a single case of MS in which CNS/CSF b12 deficiency has actually been ruled out.. People with MS tend to have HUGE responses to 10mg SC injections of neurologically active mb12. The Japanese research into large doses of mb12 indicates recovery of function occurs in MS and ALS as long as the sizable doses continue. The stakes we are playing for here amount to perhaps 100,000,000 people in the USA alone at a lifetime cost $100,000 to $1,000,000 per person not including loss of wages. That comes out to an estimated value of $100,000,000,000 to $100,000,000,000,000. If I am even 1% correct we are still talking a 1 billion to 1 trillion dollars for the people presently alive. If I am completely correct we are speaking 100 trillion dollars in todays dollars, the difference between bankrupting health care in the USA and making it affordable.

Of course methylation failure is a major player here as half or so of all the mb12 symptoms are a result of methylation failure. Methylfolate appears to improve both mb12 and adb12 response in a good 50% of people.

 

[cfsbear]

Hi Freddd,

Welcome back! Sorry about the family problems but they do have a way of forcing you to pay attention. Due to a recent unexpected major decline in my wife's neurological condition I have had to become a 24x7 caregiver and am trying to cope with a hurricane of lifestyle changes. :wheelchair::worried: It has also impacted my ability to answer posts in other forums. I suspect many people do not understand how much time it takes to compose response posts with significant technical content. Thank you for the significant time you obviously have spent in the past and even on you "return" post.


Before I get into the questions I asked, I did make one post you might want to see about a new B12 blood test that is now available. It is probably much more accurate than prior tests and Richvac immediately pointed out it may be one of a combination of tests that allows debugging where a person's B12 problem is biochemically. I don't think this will help with a CSF value for active B12 though.
http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story&p=134594&viewfull=1
November 4th, 2010 02:30 AM

Next to my post on the new test are these questions on ratios:
http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story&p=134594&viewfull=1
Ratio of methyl-B12, adenosyl-B12 and methyl-folate in large daily doses
November 4th, 2010 03:18 AM

This post has more background with some preliminary results.
http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story/page175
December 3rd, 2010 03:06 AM by cfsbear

My wife's Serotonin Syndrome (SS) was at the end of September but she still gets much milder echoes of it currently. Her serotonin blood test from last month came back at 208 ng/mL with a range of 50-220. This is two months after the SS but I understand the results are of limited use because of the daily fluctuations of serotonin. Still she is right against the top end.

I am still debugging what is the direct cause of her SS but I suspect it is Folate/l-methylfolate. If I give her 800 mcg of l-methylfolate, 2 Jarrow 5mg methylB12 sublinguals and a Jarrow b-complex each night, she will have a problem in a few days, for a few days (if I stop all B12 and Folate). When the current episode is done I will try to just use mB12 and aB12 sublinguals.

Because of the elimination of her sleep apnea and improved sense of smell, we have been looking at getting her sub cu-injections. For the moment we have reduced her daily mB12 and/or aB12 down from 50mg of sublinguals to 10mg or less. She has had mild echoes of her sleep apnea return occasionally.

Thanks in advance.

CFSbear

P.S. In your "BASIC VITAMINS AND SUPPLEMENTS" you might want to indicate that when taking L-carnitine Fumarate or aceltyl-L-carnitine that alpha Lipoic acid is required at the same time to reduce the resulting oxidative damage. The ratio is supposed to be 400 mg ALA to 1000 mg.net L-carnitine.

This is from the papers that Bruce Ames group put out on it's effects on aging rats. Wiki has links to the articles (http://en.wikipedia.org/wiki/Lipoic_acid). We use the bio active form R-LA instead of the cheaper ALA (R+S LA).

P.P.S. I am sending you a PM on the MS part of your post.

 

[Freddd]

Freddd and others,

My wife has been following Freddd's protocol for about two months and is up to 50 mg single dose sublingual aB12 in the morning, mB12 at bedtime and oral mFolate each time. I expect she will get a prescription soon for SC injections of mB12.

She has had the serious neurological disease Ataxia for more than 5 years which causes her coordination problems with most voluntary movements including walking, typing, speech and reading. On MRI she has visible damage to the cerebellum. She is mostly wheelchair bound at this time. She also has substantial Parkinsonian tremors in her hands.

We are following almost all of the protocol but dropped SAM-e because of the warnings on the box and have currently suspended TMG temporarily.

She has become aware of her sense of smell in the last week and the noisy breathing she does with sleep apnea has greatly diminished and appears to be going away. The latter was very pronounced (scary) and audible at considerable distance.

Before getting the protocol really started she had one night of moderate serotonin syndrome (serotonin poisoning). She stopped taking her antidepressant (an SSRI) the next day and after a few days most of the symptoms were gone.

In the last week or so she has had a return of fairly mild versions of some of the Serotonin Syndrome symptoms. She gets very sleepy, cannot sit up straight particularly when tired and at night her legs may slowly collapse as if they could not handle her body weight.

I suspect she is producing enough extra serotonin to cause the symptoms. She will probably get a blood test in a week. I know SAM-e is involved in serotonin production (which is why we stopped it and for the moment TMG) but I wonder how directly mB12,aB12,mFolate are involved. I don't know if her symptoms are a sign of healing from a number of starved reactions starting back up that are not properly regulated or some other issue(s).

My primary question is do you think I can directly control her serotonin production by changing the amount of mB12, aB12 or mFolate or should I look at the other supplements in the protocol. Her symptoms are mild but a definite downward step from where she was a couple of months ago.

I am looking for opinions/thoughts as I suspect no one has a definitive answer. She has a serious disease (untreatable according to most doctors) and we are taking a number of experimental steps to try to control it. This protocol is far from the first we have tried.

She does have some peripheral neuropathy in her feet which has improved some but until recently she did not have much in the way of a start up reaction at lower doses.

While I am posting, does anyone know if a regular doctor can order a B12 test on a spinal tap (CSF, not just a blood test) or is this only available to researchers.

Thanks,

CSFbear

Hi CFSbear,

I think that I will use this one of your posts as a basis of response. For starters, tell me more about the severe ataxia. Did it start suddenly? For how long did it get worse and for how long has it been the same?

The only other issue I'll address before having that answer is in regards to the ratio of the adb12, mb12 and methylfolate. The suggested ratios of mb12 to adb12 that I have come across is in the neighborhood of 3x - 10x as much mb12 as adb12. When another person tried precise injections of adb12 and mb12, when he tried the large doses of adb12 mood and personality changes similar to those of mb12-CSF deficiency occurred. In my injection series of adb12 I approached from a titration point of view. The peak effect of adb12 was reached with 1mg of adb12 injected at the same time as 10mg of mb12. I achieve exactly the same effect with 6-9mg of sublingual adb12 taken at time of injection with mb12 10mg SC. I find that I only need 18mg of adb12 about once a week, whether in divided or single dose as long as taken at same time as the mb12 injection to provide the CSF penetrating diffusion gradient. Several people have needed somewhat larger daily doses of adb12, but not larger than the mb12 to maintain an equilibrium state with the adb12. My daughter does best on a single adb12 daily plus the mb12. For my body-adb12 equilibrium, I find about 3mg sublingual once a week maintains my body at an equilibrium with the adb12. However If I don't have the somewhat larger doses times with the injections I can't maintain the equilibrium with the CSF-adb12. 50mgs of sublingual adb12 seems rather excessive and there is no evidence that it does any good at all for ataxia in anything more than a much smaller dose. Also, the timing of the mb12 may be a problem. Morning is usually best for most people because of a delayed generation of melatonin in the evening from mb12 in the morning. An evening dose of mb12 could be causing a melatonin generation at other times of day causing daytime sleepiness.

Also, a few remarks on the 4 equilibriums -

Through a specific titration pattern of mb12, a person who has widespread startup responses can observe their continuation for 1-3 months or so and then a rapid falloff as an equilibrium is reached. Then, after an increase of another 5mg sublingual does nothing and the startup responses have essentially ended, one takes a 3mg sublingual adb12, a new round of milder startup responses occurs affecting “energy”, muscle pain, muscle deterioration and atrophy, exercise endurance, FMS tender points, non-neurological spasms. The startup symptoms of adb12 typically falloff quickly, usually less than a week when 1 pr 2 sublingual adb12 are taken. This equilibrium is reached quickly because of the specific uses that adb12 is put to and it apparently tends to stay parked in the mitochondria once there unlike the mb12 which is mostly circulating and subject to kidney excretion or collection and excretion by the liver. After this equilibrium is reached it takes about 3 days without mb12 for there to be startup effects from a single 5 star sublingual. No amount of cyanocbl or hydroxycbl appear to reach an equilibrium level of b12 where it is needed in the body as compared to 5 star mb12 or adb12 sublinguals, and many mb12/adb12 deficiency symptoms will cpontinue to worsen no matter how much hycbl or cycbl is taken or what it is taken with. Sufficiency is NEVER reached with them in anybody willing to report the details and do the trial.




I will be watching for your responses.

 

[jmiller]

Welcome back Freddd! Your presence was missed. I found this forum last May when I felt I was having a nervous breakdown and didn’t know why. I was at breaking point. I constantly felt agitated and was unable to relax. I had troubling with waking during the night. I lived with constant brain fog. I had a hard time remembering things. I suffered with severe bouts of anxiety and depression. I struggled with ugly suicidal thoughts. The active B12 protocol is single most effective thing that I've tried – it literally saved my life. The last 8 months haven’t been easy but I feel that I’m on the path to healing. You have touched a lot of people through the nightmare you passed through. I’m grateful for the time you take to reach out to desperate people that are being crushed by B12 deficiencies

joseph