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B-12 - The Hidden Story

Messages
20
Hi Rich

I was wondering whether you knew if B1 (thiamin) plays any role in methylation, or whether a deficiency of it - possibly caused by a methylation block - could lead to dysautonomia? Just been doing some reading around, and wondered if it fits in with your hypothesis.

I'm interested in your view that CFS is not the same as a B12 deficiency. How would this differ, do you think? Is the methylation block the crucial difference ? I ask because I very definitely have CFS, but cannot take the high doses of folate / B12 recommeded on the Active B12 protocol. I have run into gall bladder problems again (as at Christmas) on 600mcg folate and 7.5mg mB12, mainly presenting as problems digesting fat. Now I know what the symptoms are, I've dropped back again to 400mcg and 5mg mB12. I think you had a theory about the gall bladder and overmethylation (?) which seems to fit for me anyway. I clearly have a B12 deficiency (numerous symptoms, including a beefy red tongue), but can't take the high doses without becoming overmethylated. It is a puzzle...

Anyway, just interested in your views on the above. I am sticking with the active Bs, I have come a long way since September despite not being able to take the high doses.

Best

Nicola
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Rich

I was wondering whether you knew if B1 (thiamin) plays any role in methylation, or whether a deficiency of it - possibly caused by a methylation block - could lead to dysautonomia? Just been doing some reading around, and wondered if it fits in with your hypothesis.

I'm interested in your view that CFS is not the same as a B12 deficiency. How would this differ, do you think? Is the methylation block the crucial difference ? I ask because I very definitely have CFS, but cannot take the high doses of folate / B12 recommeded on the Active B12 protocol. I have run into gall bladder problems again (as at Christmas) on 600mcg folate and 7.5mg mB12, mainly presenting as problems digesting fat. Now I know what the symptoms are, I've dropped back again to 400mcg and 5mg mB12. I think you had a theory about the gall bladder and overmethylation (?) which seems to fit for me anyway. I clearly have a B12 deficiency (numerous symptoms, including a beefy red tongue), but can't take the high doses without becoming overmethylated. It is a puzzle...

Anyway, just interested in your views on the above. I am sticking with the active Bs, I have come a long way since September despite not being able to take the high doses.

Best

Nicola


Hi Nicola,

First, while I am not Rich, let me assure you that 5mg of sublingual Jarrow held for 45 minutes or longer produces ample b12 in serum for almost all b12 symtomolgy to resolve for almost everybody. Folate and b12 deficiencies are associated with gall bladder problems, very common in a b12/folate deficient group. Inflammation of the gall bladder, as with any other endothelial tissue, may occur because of such deficiency.

Can you describe your symptoms attributed to over methylation? What is you gall bladder theory? I have found no information really on that except for the connection to deficiency.

If the beef-red burning tongue doesn't improve very quickly, within weeks, with mb12 and Metafolin, either mb12 or Metafolin isn't getting absorbed or somethine else is missing. For it to heal you need all the usual things for healthy tissue formation like zinc, c, a, d, e, etc. Sometimes some peopl have trouble with tissue formation with adb12, which is not involved with methlation.

Now if you are taking folic acid instead of Metafolin that may be a problem. If you are not taking Jarrow or Enzymatic Therapy mb12 that could be a problem. If you are not taking Metafolin, that may be a problem just becasue other brands of methylfolate haven't been tested in the b12 deficienct poplation in the way Metafolin has. If you are slurping the b12 down or chewing it that would be a reason for poor absorbtion.

So a good place to start might be just what you are taking and how and what it it has affected and what it hasn't.
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Hi Nicola,

First, while I am not Rich, let me assure you that 5mg of sublingual Jarrow held for 45 minutes or longer produces ample b12 in serum for almost all b12 symtomolgy to resolve for almost everybody.

Hi Freddd

I'm interested in your statement above. Does that mean that if 5mg of sublingual Jarrow held for more than 45 mins produces no effect on any symptoms one way or the other you think it's unlikely that B12 deficiency is part of one's problem?

Jenny
 
Messages
20
Hi Nicola,

First, while I am not Rich, let me assure you that 5mg of sublingual Jarrow held for 45 minutes or longer produces ample b12 in serum for almost all b12 symtomolgy to resolve for almost everybody. Folate and b12 deficiencies are associated with gall bladder problems, very common in a b12/folate deficient group. Inflammation of the gall bladder, as with any other endothelial tissue, may occur because of such deficiency.

Can you describe your symptoms attributed to over methylation? What is you gall bladder theory? I have found no information really on that except for the connection to deficiency.

If the beef-red burning tongue doesn't improve very quickly, within weeks, with mb12 and Metafolin, either mb12 or Metafolin isn't getting absorbed or somethine else is missing. For it to heal you need all the usual things for healthy tissue formation like zinc, c, a, d, e, etc. Sometimes some peopl have trouble with tissue formation with adb12, which is not involved with methlation.

Now if you are taking folic acid instead of Metafolin that may be a problem. If you are not taking Jarrow or Enzymatic Therapy mb12 that could be a problem. If you are not taking Metafolin, that may be a problem just becasue other brands of methylfolate haven't been tested in the b12 deficienct poplation in the way Metafolin has. If you are slurping the b12 down or chewing it that would be a reason for poor absorbtion.

So a good place to start might be just what you are taking and how and what it it has affected and what it hasn't.


Hi Freddd

I have been meticulous in taking the brands you recommend, so every day I take the Solgar metafolin, the Jarrow mb12 and the Country Life (?) dibencozide, as well as the co-factors - magnesium, zinc, fish oil, carnitine fumarate, B Right, vit C, A, E, calcium, potassium, B6. Tried D-ribose - it made yeast worse so I stopped.

At Christmas I posted saying I had gallbladder problems which came on slowly with increasing inability to digest fats. I didn't know what it was at the time, but it soon became obvious with increasing and severe nausea, backache and a pain between my shoulderblades. I stopped taking the folate and mb12 for a couple of weeks until symptoms subsided and then slowly started on them again. I have been doing fine on 400mcg and 5mg mb12 until I upped it recently, whereupon I started again with the inability to digest fats, heartburn and diarrhea. This time I stopped for a couple of days, and everything subsided again.

At Christmas another poster complained of gallbladder problems while on high doses of mB12 ...


Originally Posted by JanisB
I tried 5 mg of methyl B12 for about 2 months as well as 3 mg of adenosyl. When I tested plasma aminos, my methylation cycle was stuck at methionine. And nothing was going down the transulfuration pathway to cystathionine either. Rich thought the methyl B12 could be speeding it up too much, yet my organic acid testing showed that I needed more folate and more B12. In previous tests (before introducing the methyl and adenosyl B12), my tests showed adequate folate and a mild need for B12.

The point I'm making, through my rambling fogged brain, is that taking high amounts of methyl B12 can mess things up for some of us.

Much better to test than to screw up your physiology. The impact on my methylation led to liver problems for me, like high enzymes (AST, ALT), inadequate bile production experienced as inability to digest a high fat meal (an omelet with a little cheese and avocado) which previously had been no problem.

Rich replied

Hi, Janis.

Here's a possible explanation for the low bile production:

Glutathione is used by the liver to produce the fraction of bile that is not associated with bile salts. So if the methylation cycle is overdriven to the point that the flow down the transsulfuration pathway goes very low, as appears to be what happened in your case, then the glutathione production will drop, and lower bile volume would be one consequence of that. High liver enzymes could reflect high oxidative stress in the liver cells, also a consequence of lowering glutathione.

Rich


This seems to be what is happening to me when my dose of folate and / or mB12 gets too high - for me. I am fine at lower doses but as soon as it gets too high I start getting heartburn and other gallbladder issues. This time I was alert enough to stop before symptoms got unpleasant, and it seems I will have to stick to the 400mcg folate and 5mg mB12 for now. In me the high doses definitely cause the gallbladder problems - I never had them before (and I have been B12 deficient for a long time) and I don't have them at low doses.

My guess as to why I still have B12 deficiency symptoms despite six months of supplementation is that there is a triage or cascade effect at work in the body - a case of where needs must first of all. I have CFS from mercury poisoning. Perhaps the difference between CSFers and B12 deficient people is that CSFers are toxic, and B12 deficient people arent, or not to the same extent. Getting methylation going in CSFers will prompt detox, which is not the same as start-up. So in me, getting methylation going prompts detox first and foremost (and for me the mercury symptoms are unmistakeable and very familiar). Once the detox is over, perhaps the B12 will be utilized by the body for healing and repair - so maybe the beefy red tongue will resolve later. I am also hoping to get rid of my POTS / dysautonomia, but I don't think that will happen until the mercury is gone.

I am just interested as to why CFS and B12 deficiency may not be the same thing (although they may overlap), and therefore treating them may require different approaches. This may explain my experience why I can't tolerate higher doses (for now anyway - while my body is working hard to get the mercury out) and maybe why B12 deficient people can.

My two cents...

Nicola
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd

I'm interested in your statement above. Does that mean that if 5mg of sublingual Jarrow held for more than 45 mins produces no effect on any symptoms one way or the other you think it's unlikely that B12 deficiency is part of one's problem?

Jenny

Hi Jenny,

No. First all the basic cofactors need to be in place. Then all the critical cofactors. I would also suggest trying the Enzymatic Therapy methylb12 as the other 5 star brand that has some slight differences. I've seen the b12 effects turn on suddenly or increase suddenly with Country Life Dibnecozide (adb12), zinc, SAM-e, L-carnitine fumarate, Metafolin, Vitamin D3 (5000 IU), and even magnesium. Then after all that is going a trial of 50mg dose mb12 and a 51mg dose of adb12 to test for a cerbral spinal fluid cobalamin deficiency which is completely undetectable without a spinal draw. Those high doses will also verify absorbtion by showing in the urine becasue actual absorbtion is sometimes a problem for some people for unknown reasons. Have you checked yourself against the list of symptoms at the very beginning of this thread? The more of those across more body systems is a very good indicator of the probability of deficiency. Also, a dose of metafolin of up to 4800mcg a day may be needed. Some additional supplemnts like glutathione or NAC & l-glutamine can prevent 100% of the effectiveness of the active b12s and active folate as long as they are taken and until lthe extra large doses of metafolin and active b12s are taken.

Additionally, most of the effects are not particualry noticable except over time. Only when there is a dramatic startup, which while not uncommon, is not anywhere near universal. I ended up putting all my symptoms in a spreadsheet (Supercalc 5 at first, Excel later) and tracking them month by month. Some changes are only visible month to month, some year to year.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd

I have been meticulous in taking the brands you recommend, so every day I take the Solgar metafolin, the Jarrow mb12 and the Country Life (?) dibencozide, as well as the co-factors - magnesium, zinc, fish oil, carnitine fumarate, B Right, vit C, A, E, calcium, potassium, B6. Tried D-ribose - it made yeast worse so I stopped.

At Christmas I posted saying I had gallbladder problems which came on slowly with increasing inability to digest fats. I didn't know what it was at the time, but it soon became obvious with increasing and severe nausea, backache and a pain between my shoulderblades. I stopped taking the folate and mb12 for a couple of weeks until symptoms subsided and then slowly started on them again. I have been doing fine on 400mcg and 5mg mb12 until I upped it recently, whereupon I started again with the inability to digest fats, heartburn and diarrhea. This time I stopped for a couple of days, and everything subsided again.

At Christmas another poster complained of gallbladder problems while on high doses of mB12 ...


Originally Posted by JanisB
I tried 5 mg of methyl B12 for about 2 months as well as 3 mg of adenosyl. When I tested plasma aminos, my methylation cycle was stuck at methionine. And nothing was going down the transulfuration pathway to cystathionine either. Rich thought the methyl B12 could be speeding it up too much, yet my organic acid testing showed that I needed more folate and more B12. In previous tests (before introducing the methyl and adenosyl B12), my tests showed adequate folate and a mild need for B12.

The point I'm making, through my rambling fogged brain, is that taking high amounts of methyl B12 can mess things up for some of us.

Much better to test than to screw up your physiology. The impact on my methylation led to liver problems for me, like high enzymes (AST, ALT), inadequate bile production experienced as inability to digest a high fat meal (an omelet with a little cheese and avocado) which previously had been no problem.

Rich replied

Hi, Janis.

Here's a possible explanation for the low bile production:

Glutathione is used by the liver to produce the fraction of bile that is not associated with bile salts. So if the methylation cycle is overdriven to the point that the flow down the transsulfuration pathway goes very low, as appears to be what happened in your case, then the glutathione production will drop, and lower bile volume would be one consequence of that. High liver enzymes could reflect high oxidative stress in the liver cells, also a consequence of lowering glutathione.

Rich


This seems to be what is happening to me when my dose of folate and / or mB12 gets too high - for me. I am fine at lower doses but as soon as it gets too high I start getting heartburn and other gallbladder issues. This time I was alert enough to stop before symptoms got unpleasant, and it seems I will have to stick to the 400mcg folate and 5mg mB12 for now. In me the high doses definitely cause the gallbladder problems - I never had them before (and I have been B12 deficient for a long time) and I don't have them at low doses.

My guess as to why I still have B12 deficiency symptoms despite six months of supplementation is that there is a triage or cascade effect at work in the body - a case of where needs must first of all. I have CFS from mercury poisoning. Perhaps the difference between CSFers and B12 deficient people is that CSFers are toxic, and B12 deficient people arent, or not to the same extent. Getting methylation going in CSFers will prompt detox, which is not the same as start-up. So in me, getting methylation going prompts detox first and foremost (and for me the mercury symptoms are unmistakeable and very familiar). Once the detox is over, perhaps the B12 will be utilized by the body for healing and repair - so maybe the beefy red tongue will resolve later. I am also hoping to get rid of my POTS / dysautonomia, but I don't think that will happen until the mercury is gone.

I am just interested as to why CFS and B12 deficiency may not be the same thing (although they may overlap), and therefore treating them may require different approaches. This may explain my experience why I can't tolerate higher doses (for now anyway - while my body is working hard to get the mercury out) and maybe why B12 deficient people can.

My two cents...

Nicola


Hi Nicola,

Very interesting. There are an awfull lot of gall baldder problems associated with b12 deficiency. I went through that too.

pain between my shoulderblades

I had that but only on the left side. Not one doc ever recognized that as a symptom of gall bladder problems for 20 years. All the nausea and other things were considered to go along with IBS and my ITS ALL IN YOUR HEAD vast array of symptoms and therefore ignored. Of course they all went away with mb12 over a couple of years. Having my gall bladder out reduced the nausea and such by about 50% and got rid of the 2 hour post meal nausea.

How impaired do you think your absorbtion of nutrients is?

This sounds like one of those difficult uphill struggles, of getting the healing going. Often the healing of one things is dependent upon something else happening first. Good luck and keep plugging away. To me, this sounds like something, is still missing or not being absorbed. I don't see Vitamin D on your list. Was that an omission of listing or of taking?

Poor absorbtion of fats and fat soluable vitamins and other things might be a problem.

Which of your symptoms have responded and to what degrees?
 

richvank

Senior Member
Messages
2,732
Overdriving the methylation cycle, elevated sarcosine and prostate cancer

Hi, all.

I just learned something that I think I should pass on to you.

As you know, I have expressed concern in the past about the possibility that high dosages of 5-methyl THF together with high dosages of methyl B12 could overdrive the methylation cycle in people with CFS.

I have now received plasma amino acids test results from two people who have been on this type of protocol for some time (names withheld because of patient privacy rights), and this is the pattern they have both shown:

1. MethionineHigh

2. HomocystineBelow detection limit

3. Methionine sulfoxide--Detectable to elevated

3. SarcosineVery high

4. Serine/Glycine ratio--Low

5. CystathionineBelow detection limit

6. TaurineLow-normal


This is how I interpret this pattern:

The high methionine level is unusual in CFS, as it is usually low. This suggests that it is being recycled rapidly from homocysteine, unless it is being supplemented.

The undetectable homocystine, which is the oxidized form of homocysteine, suggests that homocysteine is also very low. This inference can be made because the presence of methionine sulfoxide gives evidence of a state of oxidative stress, which suggests that if homocysteine were present in significant amounts, homocystine would also be detected.

The combination of inferred low homocysteine and high methionine suggests that the conversion of homocysteine to methionine is rapid, thus inferring that the methylation cycle is running faster than normal.

The very high sarcosine confirms that the methylation cycle is running faster than normal. The formation of sarcosine from glycine by the enzyme glycine N-methyl transferase serves as sort of a pressure relief valve for the methyation cycle, dissipating methylation capacity by forming sarcosine when the ratio of S-adenosylmethionine to S-adenosylhomocysteine is tending to become too high.

The low ratio of serine to glycine suggests that the serine hydroxymethyltransferase (SHMT) reaction is running faster than normal, which suggests that tetrahydrofolate is higher than normal, which in turn suggests that the methionine synthase reaction is running faster than normal.

If the methionine synthase reaction is running faster than normal, the cystathionine beta synthase reaction would not be expected to be able to compete as well as normal for homocysteine, and thus the flow down the transsulfuration pathway would be expected to be lower than normal. Evidence that this true is the undetectable level of cystathionine.

Additional support for low flow down the transsulfuration pathway comes from the low-normal level of taurine.


What would be the consequences of overdriving the methylation cycle?

I think that one would be that the sulfur metabolism, including cysteine, glutathione and taurine would not be able to recover as rapidly as they would if the methylation cycle was not running so fast. This could slow the overall recovery, I think. It would leave the person in a state of oxidative stress longer, and would slow the recovery of the detox system and the immune system, as well as maintaining the symptoms caused by low glutathione for a longer time.

The other consequence is that sarcosine remains high in an effort to control the SAMe to SAH ratio, which is being pushed higher than normal. Does this matter?
It looks as though it might, from a paper published last year, abstracted below (the full paper is available from PubMed, by entering the PMID number in their search box, and then clicking on the colored box at the upper right of the abstract page.) Note especially the paragraph that begins with the word "sarcosine":


Nature. 2009 Feb 12;457(7231):910-4.
Metabolomic profiles delineate potential role for sarcosine in prostate cancer progression.

Sreekumar A, Poisson LM, Rajendiran TM, Khan AP, Cao Q, Yu J, Laxman B, Mehra R, Lonigro RJ, Li Y, Nyati MK, Ahsan A, Kalyana-Sundaram S, Han B, Cao X, Byun J, Omenn GS, Ghosh D, Pennathur S, Alexander DC, Berger A, Shuster JR, Wei JT, Varambally S, Beecher C, Chinnaiyan AM.

The Michigan Center for Translational Pathology, Ann Arbor, USA.

Comment in:

* Nature. 2009 Feb 12;457(7231):799-800.

Multiple, complex molecular events characterize cancer development and progression. Deciphering the molecular networks that distinguish organ-confined disease from metastatic disease may lead to the identification of critical biomarkers for cancer invasion and disease aggressiveness. Although gene and protein expression have been extensively profiled in human tumours, little is known about the global metabolomic alterations that characterize neoplastic progression. Using a combination of high-throughput liquid-and-gas-chromatography-based mass spectrometry, we profiled more than 1,126 metabolites across 262 clinical samples related to prostate cancer (42 tissues and 110 each of urine and plasma). These unbiased metabolomic profiles were able to distinguish benign prostate, clinically localized prostate cancer and metastatic disease.

Sarcosine, an N-methyl derivative of the amino acid glycine, was identified as a differential metabolite that was highly increased during prostate cancer progression to metastasis and can be detected non-invasively in urine. Sarcosine levels were also increased in invasive prostate cancer cell lines relative to benign prostate epithelial cells. Knockdown of glycine-N-methyl transferase, the enzyme that generates sarcosine from glycine, attenuated prostate cancer invasion. Addition of exogenous sarcosine or knockdown of the enzyme that leads to sarcosine degradation, sarcosine dehydrogenase, induced an invasive phenotype in benign prostate epithelial cells.

Androgen receptor and the ERG gene fusion product coordinately regulate components of the sarcosine pathway. Here, by profiling the metabolomic alterations of prostate cancer progression, we reveal sarcosine as a potentially important metabolic intermediary of cancer cell invasion and aggressivity.

PMID: 19212411 [PubMed - indexed for MEDLINE]


I think this is something to be concerned about. In particular, I think it would be wise for any men who have been on this protocol for an extended time to have a digital rectal exam and a PSA test to check for prostate cancer. If prostate cancer is present, I think it would be wise to lower these dosages to allow sarcosine to come down.

Beyond that, I continue to have doubts about the advisability of use of this high dosage protocol. If sarcosine stimulates prostate cancer, it might stimulate other types of cancer as well. I continue to believe that people should proceed more slowly with treatment, and should monitor the status of their methylation cycle by lab testing during the treatment, aiming to restore it to normal status, rather than to overdriven status.


Best regards,

Rich
 

Cort

Phoenix Rising Founder
Our apologies for 'losing' for a period of time this important thread. It was deleted by an apparently disturbed person who had (but who no longer does have) access to the admin section of the Forums.

I just want to thank xlynx for a lot of work getting this thread restored. Its one of our most important threads - obviously. It wasn't easy to get it back but here it is.

Some posts from the last 24 hours it was up may be missing.

Thanks xlynx for bringing back 131 pages of posts that many people had worked hard on for eight months!. Our hero for the day (or week or month) :D:D
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Our apologies for 'losing' for a period of time this important thread. It was deleted by an apparently disturbed person who had (but who no longer does have) access to the admin section of the Forums.

HUH? What's up with that?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Rich,

I would like to repost your recent post elsewhere for all interested parties to see as I have in the past. I do believe that it is vital that all these things get airing.

This is of course of concern to me as it would to anybody. I do have a an annual prostate exam, due next month for the current one. In the past I have had a completely clean bill of health on this, nothing even ambiguous. The dose of mb12 I take has been very carefully arrived at by titration over a nearly 7 year period. The current dose size and frequency is the minimum dose needed to make progress at reversing the nerve damage going to my feet and arms. The dose size is the minimum needed on a daily basis to stop progressive neurological deterioration. It is very sensitive to anything including light exposure of mb12. The day I started it (7.5mg doses), I wasn't able to walk and that was progressing rapidly. If it hadn't cleared up I would have been in a wheelchair wearing diapers. I had been sufferring intermittant incontinance and episodes of drop foot and loss of motor control and sense of position of my leg for 5 years and getting worse. I have had a normal life restored to me. Let's be clear on the stakes that I am playing for

In the context I am playing in CNS/CFS look like a small subset and an early stage of the problem. It gets much worse from there. I had problems back to 1 year old. I had FMS for 10 years before the CFS kicked in. I had CFS for 5 years before I started devloping signs of SACD. I had signs of SACD for 6 years before footdrop, incontinence and other things happened. I had those for 4 years before I started having visual deterioration.

As far as other people go, I have outlined a titration path and criteria for determining if more would benefit them. That doesn't mean people read and follow that. My estimate is that perhaps 5% need to go above normal subligual doses. Anybody in a wheelchair or headed for one with urinary and fecal incontinance from these things benefits from these sizable doses.

There is substantial evidence that some cancers are in fact caused by a deficiency of mb12 and flawed DNA replication. A number (at least half a dozen last I heard) of cancers including colon cancer is being investigated for just such contributing factors, and more are being added to that list.

There is evidence mounting of the antitumor effects of methylcobalamin which don't necessarily reconcile with other research. Also, the effects of low CSF/CNS levels of cobalamins in CFS/FMS/Alzheimer's look like smoking guns to me. Now it may actually be that best effectiveness for that is actually 5mg (or whatever, that's what a study used) itrathecally twice a year or something like that rather than building a steep diffusion gradiant by upping serum levels is vastly superior.

Patents exist for the idea of attaching a chemotherapy compound to the cobalt in place of the methyl or other groups to carry it into the heart of each cancer cell and then destructing it.

Amounts in excess of 5mg sublingual tablet a day have only apparantly benefited me neurologically. Everything else cleared up on that plus 3mg adb12 once a week. The other cofactors though were critically important. Some people have a dramatic clearing of brainfog on 15mg a day of adb12. My optimum appears to be 18mg of adb12 once a week timed for joining the mb12 injection in the diffusion gradiant.

A problem for presenting any kind of information is that it gets twisted out of shape very quickly. As mb12 has been available for 12 years commercially in the USA and elsewhere if it has some side effects as suggested by this article that might be long enough for these things to start turning up. The beauty of the internet is that it allows a person to extract information being done in millions of individual parallel experiments.

I have been on the side of moderation and balance, using the minimum that has the necessary beneficial effects. I have partially designed but not yet written software for tracking the changes and effects of all symptoms and problems across a lifetime and dozens of substances including vitamins, drugs and so on, all at the same time, designed to integrate all of the information across potentially millions of people in a distributed processing environment and extracting unique, common and everything in between patterns. I believe that with this that it might be possible to predict who would develop CFS/FMS etc as an adult from childhood history. The patterns are there. My problem is not the design, but that while I was out of the software business and disabled, 100% of the tools have gone through 3 rapid generations of evolution. In 1986 I was writting leading edge articles on leading edge software tools and helping invent object oriented progamming and analysis. Now I'm having to learn how to do displays all over again and am just another beginner in many ways. I have a 20 year hole in my memory. My main project became solving my own problem that was taking my life and mind away while I still had the abilities to do so. I was running out of time as I could hardly read or type any more on the day I decided to take mb12. I had near constant sensory hallucinations of all varieties as my neurology was breaking down. The environment got very noisy you might say.

The specifics of the biochemistry are very important. I'm going for solving the overall of it with millions of details to be filled in. It's a non statistical basis. Statistics homoginize the pattern details into non existance. Statistical medicine was killing me. I will start searcing for the patterns involving prostate cancer and mb12 and see what I can find.

We all have to make choices. If a high dose active b12 therapy can give me 30 years of high quality life I would never have had otherwise, bringing me out of a literal hell, and then I get a cancer I might have gotton anyway (what percentage of men die with prostate cancer present?) believe me it is well worth it. I would have spent my last years in a wheelchair in diapers, unable to read and a deteriorating mind, starting a few years ago. All my systems were breaking down. It was highly unlkiely that I would have ever survived to get and maybe die from prostate or any other cancer. Undoubtably mb12 saving lives will mean more people die of other things. That is part of the statistical fallacy. You squeeze out death one place and it pops up somewhere else. In the meantine it has given me 5 years of quality life with possibly decades more to come. Choosing to stay sick to avoid possibly dying of something else possibly decades in the future is a choice we make every day. How many of you avoid charcoal grilled meat or frenchfries or baked breads with crispy crusts or a load of other things known to cause cancer, or heart disease or something. Keep perspective. You pays your money and makes your choices. And 100% of it is fatal. Nobody gets out of this life alive. Driving your car is probably the most dangerous thing most people do and changing a lightbulb in a ceiling fixture may be number two. And taking a walk in sunlight without sunblock. Now there is a known hazard. Keep a perspective.

And as the time traveler Ferdinan Feghoot said to his son at the cannibal's feast "One man's meat is another man's poi, son"
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
And now for something completely different, one of those niggling little details. As I have been reading up on the photolytic deterioration of mb12 I have found out how little light is actually required for that. A syringe has approximatedly 10 times the crossection per 0.5ml that a vial full of mb12 has. I have been wrapping my vials in foil for some time now and that has completely elliminated the day by day deterioration of the mb12. Many who have prescriptions for injectable mb12 have noticed that the mb12 becomes less effective and that acne type lesions start breaking out as the vial advances towards empty. I've taken the next step and I wrap each syringe in foil before drawing the injection. It makes a slight but noticable difference. I wouldn't have thought that 1 minute of exposure to room light would cause a noticable effect, but it does. It's not hugely noticable but the cumulative difference over a few days is definitely noticable.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
My personal program is always an ongoing experiment. I'm always re-evaluating and changing, trying things, and seeking what makes a beneficial difference. In giving due consideration of what Rich has posted I am going to re-evaluate what differenences and benefits current flow from SAM-e and TMG for me at this stage of things. I am taking a lot more methylfolate now and hadn't re-evaluated since changing that dose. I am recovered from the glutathione precursor debacle. The SAM-e and TMG made a huge difference in the mid phases of my healing and recovery. I had already reduced them about two years ago as they no longer made any discernable differences past the first small dose. The question now comes up is do they make a difference and does the difference matter. About the only difference they appear to make for me is a small increases in energy, but it may not be a significant difference. So now what the test comes down to is the question on how they affect my neurological status and healing since that is what I am optimizing for currently. They don't appear central to the healing in the way both the methylfolate and MB12 are. So it may be prudent to cut back on them at this stage, especially as they may not be serving the purpose that they once were.

People have asked the questions about what happens when healing is largely complete, about what can be cut back without causing problems to reappear or stopping the much smaller progress that is being made. So now it appears time to examine that in regard to these methyl sources.

In my readings I haven't seen any smoking guns on this, nothing that screams out "this is happening". What I see is a fair amount of incomplete information and research that is most certainly NOT based on active b12s and active folate underlying it or even approaching that question. It also isn't based on adequacy of entire b-complex, A, D, E, C, etc, terribly incomplete. However, I also don't believe that everything needs to be taken indefinitely without re-examaination of potential cost/benefit situations, and I do mean all kinds of costs, not just financial. Just from financial cost, SAM-e is expensive. I do believe that these questions need to be examined against a standardized nutritional backround which is not done and may be decades from being done.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
The hazards are everywhere

Study finds possible heart risk with prostate drug
Full results of a big study testing a drug for preventing prostate cancer show a higher risk of heart failure, a surprise finding that could dampen enthusiasm for expanding its use.
On Monday, GlaxoSmithKline PLC asked the federal Food and Drug Administration to approve its drug Avodart as a cancer preventive for men at higher-than-normal risk of the disease
http://news.yahoo.com/s/ap/20100331/ap_on_he_me/us_med_prostate_cancer
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
It has finally happened. For a long time I wondered if it was actually possible since everybody said "impossible". My feet have both had numb areas since 1992, the right foot worse than the left foot. Today, it is clear that I don't actually have any numb areas remaining on my left foot. It still isn't normal. There is still plenty of pain. But there are not actually any "dead numb" areas remaining on my left foot for the first time since some time in 1992. That is not true on my right foot. But I have plenty of hope that can occur on my right foot too. Kevin and I have talked about the "presumed permanent" aspect of the b12 deficiency damage of this sort and qualified it as being in the "absence of sufficient methylcobalamin and or adenosylcobalamin taken frequently enough for long enough" and of course cofactors.

I am totally pleased to say that the "presumed" part appears correct, it was only presumed permanent. It does not actually appear to be permanent. As of this moment I have to say "presumed correctable" with enough of the right b12s and cofactors. I may still have some reversals ahead though of course "hope springs eternal ...". My left foot has been feeling noticably better over the course of the day. So here is hoping that at last I have everything right and can maintain it and that my right foot will catch up in a short while.

None of my docs would have bet a nickle that I would get feeling back in my feet after 18 years. I have always maintained the possibility and acted to stear towards that possibility. Even if this is just a glimpse, this is the first glimpse I have had in 15 years.

I have kept piling increment upon increment hoping to finally do it. So finally today, the increments seem to have added up.

When I was in nursery school at 3 years old I started building a stack of blocks to the ceiling. I got it as high as I could reach so it wasn't high enough. I brought a chair over and stood on the chair to build it higher, but still couldn't reach high enough to get it to the ceiling. Next I moved all my blocks next to a table, built them until I had to stand on the chair to put more on. Then I put a bunch of blocks on the table and stood on the table to pile them higher, and I still couldn't reach, and still nobody noticed. At no time did any of the three teachers notice me. Then I pulled the chair up onto the table and stood on the chair to keep piling on the blocks. Again not a teacher noticed. I finally stood on the chair on the table on tippytoe to put the last block on the stack of blocks, only 1 block wide all the way up and put the last possible block on the stack, there not being room below the ceiling for any more. As I put the last possible block on, the whole tower of blocks collapsed right onto my cousins head. Then everybody in the room noticed me standing on tippytoe on the chair on the table. OOPS.

I hope this works better. The increments are stacked even higher.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
A new review of a renewed old product

It has been my great pleasure to renew my aquaintance with Enzymatic Therapy B12 INFUSION (formerly Bioactive B12). Everything about it has been changed except the quality. It is completely redesigned packaging with a convienient flip top bottle. It is renamed. The flavoring is different, and while personally I preferred the previous flavoring, it just doesn't matter at all. The biggest thing is that it is not acid at all that I can tell. I found it to be completely non irritating. This may be the solution for people who have an irritation problem with the more acid Jarrow. To top it off this is without a doubt the most effective methylcobalamin I have ever taken, every bit the equal of it's previous incarnation if not superior. I have been considering revising my ratings for some time and maybe this will do it. At the very least I have to call it 5 stars plus. Remember, I'm injecting 10mg of methylcobalamin 3 times a day. 10mg of this Enzymatic Therapy held for 2 hours as a single dose under my upper lip (10 tablets are a squeeze but they are a little smaller) produced a pronounced differential effect when timed for CNS/CSF absorbtion with my injection and oral methylfolate in my current methodology. 10mg of the Jarrow done in the same way produces much less or no differential effect depending upon how much exposure to light my injectable b12 has undergone. It made a pronounced neurological only differential effect and immediately affected mood and visibly brightened all my sensory modes. The reason I took 10mg was to give it a chance compared to my already saturated system. For the first year of my incredibly successful first year of healing I had this as part of the daily mix. This was the only brand that nothing else could produce a differential effect over and it produced a differential effect over all other brands except the Jarrow, for my other testers. With 4 out of 5 testers not reporting any difference between EnzyT and Jarrow, I only reported the unanimous results. I think that it is worth trying, especially for those with irritation problems or those whose healing has slowed down. It is 3 times the price of the Jarrow 1mg at iherb.

For a long time I had thought that I would be done with sublingual mb12 now that I am injecting mb12. However, through the years I have kept taking the Jarrow on and off so I had a standard basis of comparison for my injectable and easily could tell good batches from bad. I had always continued the Country Life dibecozide. Now I am going to add back in the Enzymatic Therapy B12 INFUSION for that incremental kick to see if I can finsih up healing my feet. This is a very special methylcobalamin; use it in good health. I will experiment with different amounts timed with injections so as to get maximum benefits.
 

Sunday

Senior Member
Messages
733
Thanks for this report, I'll be interested to hear how it goes adding the ET b12 Infusion. I might give this a whirl myself, after I finish adding my latest cofactor, which is CoQ12. It's early days yet, but when I tried a 10-day free sample (courtesy of iherb) I found myself improving quite a bit in the brain fog department and at least somewhat in the physical energy and balance departments. I've started on it again and I'm already starting to feel improvement, but of course it's too early to tell yet.

Btw, I heard about a supplement marketed as Prevagen. It's a protein that binds calcium and is apparently showing good results for improving memory and cog function. Would anyone know about how this works, or have an idea if it would be a helpful addition for CFS?