Rash/Lesion Start Up From Methylation Protocols

[Freddd]

Hello to all,

I tried some fiber procuct with inulin or something like that to feed bacteria but I didnt tolerate it.

Another question I have is if you experience as well a kind of increased nerve sensation, increased "legs falling asleep" 8do you say this in englisch like that?) after raising methl-b12. I have this and I wonder if its good or bad, also I feel that my eyes are like "confused" I cant look as clear as before, something is different. Any suggestions? I think Freddd is expert in this area but everyboy is welcome.

Hi Joopiter,


if you experience as well a kind of increased nerve sensation, increased "legs falling asleep

Are you meaning increased tingling and "pins and needles" sensation or are you meaning completely dead/numb?

If tingling and increased paresthesias of many kinds, that often happens with mb12 as the nerves start being more active and coming back. For me this increase usually leads to going through the onset paresthesias (neurological noise), that may have occurred 20 years before and be a distant at best memory, in reverse order until it goes through a hyper sensitive phase and then fades to normal. This can take up to a year or so. When I get a not so good batch of mb12 the tingling in my feet fades to numbness and when I get a better batch it increases tingling a lot. Feeling returns in little patches. In the past month I have regained more feeling in my toes and better motor control with most of the numbness now in my arch, which has increasing pain which comes before the tingling if it is already numb. These are the muscles I am talking about as I have feeling in my entire feet in the skin. I have always considered that the multisensory hallucinations were "neurological noise" from the lack of functionality and damage to the nerves. Where this noise happens determines how it is perceived and interpreted.

also I feel that my eyes are like "confused" I cant look as clear as before, something is different

I've never heard it described that way. I will describe what I experienced. In the months before I first started mb12 I had been loosing the ability to focus my eyes. My wife read the entire Hobbit and Lord of the Rings series to me as I could no longer read on many days. It felt like I had no control of the muscles of my eyes. The focusing muscles seemed to spasm, like the muscles all over my body and sometimes gave me horrible headaches. With the mb12 energy started returning to my all the muscles in my body and I began to be able to focus my eyes every day. The nerves and muscles were different than I had gotten used to over the previous decades. However, with use they started coordinating again. As the lack can affect the nerves as well, if one gets increased paresthesias (neurological noise) in the nerves to the eye it could cause all sorts of things. If you look at the list of b12 deficiency symptoms you will see many effects on the eyes. I'm not surprised that eyes might be affected during the healing process. Mine were, thank heavens.

 

[Joopiter76]

Thanks Freddd,

yes I have an increase sensation of my leg nerves. If I put one leg over the other it well start to feel like needles and paraesthesia within 2 minutes. Usually in a normal person this would take 15 min or more.

with my eyes I mean that I dont have the same contrast black/white so I must focus more on the line I just read. And they feel more tired. Maybe the mobilisation of toxins? Im thinking about that because in the shoemaker neurotoxin test one has to be able to count black/grey lines which are very close to each other.

 

[Vegas]

Welcome to my world!

Thanks Freddd,

with my eyes I mean that I dont have the same contrast black/white so I must focus more on the line I just read. And they feel more tired. Maybe the mobilisation of toxins? Im thinking about that because in the shoemaker neurotoxin test one has to be able to count black/grey lines which are very close to each other.

Blurry vision; difficulty focusing; heavy, tired eyes--this is largely caused by the mobilization of toxins, primarly neurotoxins, in my humble opinion. It's typically associated with worsening fatigue and brain fog. I think it is fascinating just how predictably I can "dial up" these symptoms by taking methyl or adenosyl, assuming I have good folate saturation.

 

[Freddd]

Blurry vision; difficulty focusing; heavy, tired eyes--this is largely caused by the mobilization of toxins, primarly neurotoxins, in my humble opinion. It's typically associated with worsening fatigue and brain fog. I think it is fascinating just how predictably I can "dial up" these symptoms by taking methyl or adenosyl, assuming I have good folate saturation.

Hi Vegas,

I would be interested in hearing your hypothesis as to why adenosylb12 would have the same effect as methylb12 and why then hydroxcbl and cyanocbl are not included?

 

[leaves]

I also have the increased numbness/ falling asleep of limbs. Funny that so many of us have that.

 

[Freddd]

I also have the increased numbness/ falling asleep of limbs. Funny that so many of us have that.

Hi Leaves,

Could you please explain what that means? I'm working on a revised symptoms list and I'm wondering if I need to add another symptom or at least description. It is interesting that a lot mention it in various ways. I also had lots of problems that might be described that way but can also be described in other ways. I had 3 or 4 distinctly different things that might fit that description or might not.

For instance, when the circulation was cut off to my arm in certain sleeping positions it would be a dead hunk of meat when I woke up, then extreme pins and needles as circulation returns. On the other hand, if I sleep on my side, the arm on top often develops certain sensations if I don't put a pillow under it keeping it up off my side, which only reduces the sensation. But this never gets numb and seems more neurological, like pressure on a nerve or something.

 

[leaves]

Well lately I notice 4 things
-stinging in eye
- needles and buzzing feeling in feet
-increased involuntary movement of fingers, face and legs
-when I cut blood flow for a very short wile of a limb (for example by sitting) the limb goes numb; I don't have feeling in it anymore. when I wake it up I get pins and needles too

 

[Joopiter76]

yes thats the kind of feeling I experience. When circulation is cout off for a very short time then this comes. maybe this is because of reduced oxigen transport due to our illness but that wouldn`t explain why it is increased under especially methyl-B12

It would be necessary to make clear if the symptoms occur because of increased Methyl-B12 or because of a lack of B12 or if they are independant of any B12.

 

[Vegas]

Hi Vegas,

I would be interested in hearing your hypothesis as to why adenosylb12 would have the same effect as methylb12 and why then hydroxcbl and cyanocbl are not included?

My experiences with cyan have been too limited to draw any conclusions; I never took it in large amounts or with active folates or other supportive cofactors. Actually, my early experiences with only sublingual methyl produced no noticeable effects whatsoever. As you have detailed, there could be a number of reasons for this. Hydroxocobalamin did produce significant effects when I took it concurrently with the other components of Rich's protocol, so I do consider it effective. After starting methyl and adenosyl; however, three months or so after starting Rich's protocol I pretty quickly experienced the greater bioavailability of these forms. At first I alternated hydro with methyl and adeno, and I eventually worked up to taking the active forms exclusively. I today correllate these active forms with more vigorus detox symptoms and based upon the sulfur headaches, temperature and metabolism changes, and the amelioration of symptoms, what I presume to be is more efficient methionine synthase activity/glutathione production/etc.

Your question about the relative efficacy of adenosyl to methyl is a good one, but I don't have a good answer. First you have to understand that I am comparing 1 mg methyl to 3 mg of adenosyl (your brands), so we are not comparing equivalent dosages. Still, I've actually noted that quite a few others who post on this forum also report that adenosyl is as or more effective, in some cases, than methylcobalamin. I think they produce somewhat different responses, but my experiences are dissimilar to what you have reported. I would argue that the methyl is "spiky", it has a more dramatic effect than adenosyl, and can sometimes result in what I would characterize as a more intense and adverse symptomatic response. In this regard, the more intense effects of methyl seem to cause somewhat more fatigue, which might explain the preference for adenosyl reported by some--perhaps these same people have greater toxic burdens. I also generally experience more brain fog from methyl vs. adenosyl. Presumably the more rapid saturation of methyl as compared to adenosyl, which requires conversion, explains this outcome. So, perhaps a more gradual infusion is more tolerable. Regardless of the explanation, I don't have any doubts that adenosyl is being sufficiently converted to methyl in my situation because it is working independent of supplemental methylcobalamin. Actually both work, and are considerably more "potent" than hydroxo, but I believe hydroxo has its uses too: It is more gentle.

 

[Freddd]

yes thats the kind of feeling I experience. When circulation is cout off for a very short time then this comes. maybe this is because of reduced oxigen transport due to our illness but that wouldn`t explain why it is increased under especially methyl-B12

It would be necessary to make clear if the symptoms occur because of increased Methyl-B12 or because of a lack of B12 or if they are independant of any B12.

Hi Joopiter,

I think we have a mix of causes going on. For instance, circulation getting cut off is a guaranteed method of a limb becoming numb. One of the characteristics of FMS is neurological change that results in the perception of pain, or maybe a hypersensitivity to stimulus. That went away in about a year in my case. However, I do have some specific damage to the spinal cord nerves that causes mr problems to this day and it increases in tingling with good batches of mb12 and decreases and numbs out with lesser quality. If I can keep that "good" effect going for enough months it does proceed and give me normal feeling back which has happened in about 90% of my body, so far.

Things pick up with the mb12 because the damaged nerves start trying to work and boy do they let you know it. This intensification is normal in the neural healing as I and many others have experienced. If maintained long enough the nerves have so far healed. I was able to heal a lot of it becasue it wasn't "central" and much easier for the mb12 to reach. Adb12 has some role in this too.

 

[Freddd]

Something all of you might be interested in reading, my JACKPOT post on http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story&p=163270&posted=1#post163270

 

[LaurieL]

I had been following this thread.

Freddd,

I am copying the post an posting it here, despite the cross reference link. I believe it is important enough and would hate those whom do not click on links to miss it.

Laurie

Freddd
Join Date:Jul 2009
Location:Salt Lake City
Posts:1,092

Originally Posted by Mr.Kite
I have many of those, definitely. Who doesn't? Most are attributable to several different things, putative b12 deficiency being probably only one of them. Some I only get when I take folate or b12, like the folate now causing OCD, or the hydroxy injections making me feel paranoid. But that went away as soon as I stopped the injections. I think TMG or something related also had a major negative effect on cognition.

Hi Mr. Kite,

I'm preparing a an answer to your previous post but wanted to say a couple of things about this list.


I have many of those, definitely. Who doesn't?

Healthy people don't. The devil lies in the details.

Most are attributable to several different things, putative b12 deficiency being probably only one of them.

The usual thinking is that these are most all "non-specific" symptoms meaning they may have many causes and are typically ignored as long as possible for that reason until somebody like you or me becomes really ill with various mysterious diseases. However, the thing that points them straight at mb12/adb12, are the combinations of all these apparently unrelated symptoms. For any 1 of these symptoms alone and not having the others, the probability of b12 deficiency might only be 5%. However, you take 10 items across multiple body systems, ie lack of tissue reproduction, lack of energy, neurological problems, GERD, and so forth the probability approaches 100%. You take 100-200 items and the specific body-adb12, body-mb12, CNS-adb12 and CNS-mb12, and Mfolate deficiencies become clear.

The test is to try one of the 5 star methylb12. Healthy people without symptoms have have no noticeable 2 hour response at all. Terribly deficient people have a knock your socks off response, like you do. Much research says that the ONLY reliable test for b12 deficiency is a trial of b12. Now as mb12/adb12 affect 98% of those symptoms in almost everybody (with cofactors required in a good 20%) and hydroxcbl/cyanocbl only affects about 33% of these symptoms for 2/3 of people, and virtually nothing for the other third, you have already made a definitive test of the problem. You respond very strongly to mb12. This is 100% confirmation of deficiency. That is a major part of the problem in indentifying b12 deficiency, that cyanocbl and hydroxycbl are so limited in what the affect. 50 years of research and a Nobel prize awarded for a laboratory mistake has made the vast majority of b12 deficiency symptoms invisiable and undiagnosable. Treating people with cyanocbl/hydroxycbl can allow 2/3 of the symptoms to worsen, methylation exhaustion (my term) and even more severe startup when the person changes to active b12s and a host of mysterious untreatable conditions. The decades of research and thinking recommending cyanocbl/hydroxycbl for b12 deficiency treatment almost killed me and caused severe mental blindness in all the doctors and tests.

I am basing all this on my own experience as I have walked this path back from the edge of death and multisystem breakdown and helped many others do the same. There is nothing like actual experience to blow holes in all sorts of pet theories. Because I am also a systems analyst and tend to see the patterns in data even with lots of noise present, this became very evident.

So, of the many symptoms there that you have, what ones, all of them, do you have? It can very much clarify what is going on. There are many variations of some of the symptoms and that allows a progression to be seen. Progressions are also a pattern and help pin things down. Many things are there in the "diagnosed" name as well as descriptions. Redundancy in that form can tell a lot about what the person is actually saying. I'm working on a new list with another 70-100 items added as well as distinctions of what they point to. That is a lot of work and I still have some ways to go. Right now I am simulating in my head the program I am designing to do this quite automatically.

One of the things I have done on the way, early on while I was still quite ill but before I was too debilitated to travel, was to question about 1000 people on their symptoms and give them an active b12 or 2. I did this in the course of traveling for business and recreation over a couple of years, and purely dealt with people who appeared reasonably healthy in a business or recreational situation. There were three groupings of people. Those who said they had no symptoms and who had no noticeable response within 2 hours, those who had some or lots of symptoms and had some response, from mild to very strong, within 2 hours, and those who at first said "no symptoms" but after they had a response revised that and said "Oh yes, I had all those non-specific symptoms the docs all said I could ignore as they menat nothing". All in all there wasn't a group with lots of symptoms and no response, though there were some who's response would not have continued without cofactors. However, this did not mean complete lack of response, that was very rare in those with symptoms.

The one big thing that has been made very obvious over time is that a substantial percentage of persons ALSO have comorbidity of other causes which becomes much easier for their docs to diagnose after a couple of hundred other symptoms are cleared away.

If you consider that almost any stressor on the body can trigger susceptible people into a b12 deficiency the apparent "first cause" is often a virus, bacterium,toxin, injury or other cause. However, once that stress has done it's work the syndrome that continues indefinitely and is self sustaining becomes entrenched and treatment of the original cause, if possible, makes little or no difference.

As adb12/mb12 affect over 600 processes in every system of the body, it is the most limiting factor. So while B1 deficiency can certainly cause neuropathy, it is rarely the sole cause. But after the mb12/adb12 is in place then the deficiency in B1 could make a huge difference. Without cofactors, healing is very stop and go, very unpredictable and variable. Sufficiency of all the different things is difficult to come by.

One of the best examples of that is potassium. When a person starts healing with mb12, adb12, Mfolate and any one of a few other cofactors, whatever is the most limiting factor, potassium can plunge within 3 days. While that is a confirmation that the mb12 etc is indeed working, it can create a dangerous situation if the person is unprepared causing all sorts of problems and even death.

Everything you say up to this point screams active b12 and folate deficiencies. There are different or same reasons that the folates cause so much reaction. The inactive ones might be because you can't convert them and they worsen the deficiency or maybe becasue you can. In that case without the mb12 they just throw you deeper into the methyl-trap symptoms. Sometimes a person can't break even. I have found that for a person as deep in the trap as you appear to be, and I was, to be a very exacting thing with startup in a correct order/combination/balance or things go wrong.

 

[LaurieL]

I would like to add another of your response posts here as well. Again the cross reference link provided originally by Freddd.

http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story&p=163270&posted=1#post163270

Laurie

Freddd
Join Date:Jul 2009
Location:Salt Lake City
Posts:1,092

Originally Posted by Mr.Kite
I've taken folic acid, folinic acid, and l-5 methyl tetrahydrofolate. Originally folinic acid lowered my heart rate into the 40s and completely alleviated OCD. Since I had a severe energy crash last fall, all folates at any dose now cause massive and severe depression, OCD, and GERD so severe it caused ulcers that I am still dealing with from when the 5-mthf triggered the GERD last december. If I took another dose of folate and it caused that same reaction, I would probably be dead from a perforated ulcer. So there is no way possible that I can take any folate at this time.

I thought I had read rich say something about ab12 being okay, just not mb12.

I'm not trying to prove anything, I'm trying to find out what's wrong so I can attempt to fix it. I don't want to get results that aren't going to adequately represent what's going on in my body the majority of the time.

That doesn't seem to be the case based on most people I have read about who have taken the test. Not that the test is essential for treatment, but if richvank, dr. yasko, dr. nelson, etc. are to be believed, most people seem to be having success with the methylation protocol. I don't see how more information can be a bad thing. I know I was mercury poisoned, affecting my glutathione status as well as many other metabolic processes - citric acid/krebs, detox, etc. - and I also know that I have pronounced reactions to the methylation supplements, including the hydroxy injections, the folates, TMG, and SAMe (causes massive depression, also), so it seems to make sense to have a deeper look at those processes.

With all the symptoms from taking methylation substances, it seems reasonable to me to look at both the methylation hypothesis and the 'correct the deficiencies' hypothesis. In this case, the 'correct the deficiency' hypothesis might not be sufficient, because it appears that there could be and probably are underlying metabolic and neurochemical issues that would prevent me from correcting the deficiency without correcting or addressing those other problems first. Ideally the answers to the first hypothesis would lead to the second hypothesis, it seemed to me. From what I have gathered so far, I don't see these issues necessarily as being mutually exclusive, at least.

I'm not sure what symptom list you're referring to, can you provide the exact link? I can tell you without a list that my main symptoms are the fatigue/PEM, and cognitive and mood issues. Everything else is just part of the overall picture - carpal tunnel, immune deficiency, GERD, etc.

Hi Mr. Kite,

Please understand that my viewpoint is colored by the complete and abject failure of approximately 100 practitioners with plenty of theories, none of them correct and all based on 50 years of inactive cobalamin research, over a period of 20 years and $200,000 out of pocket for tests and treatment to do anything worthwhile, even with test results and symptoms staring then in the face that should have told them what was going on. I delivered to them photocopies of the identification of the real active b12s to them starting in 1978 and why the cyanocbl wouldn't work, from the old fashioned all day at the library routine, and all that succeeded in doing was gettiing me called names and kicked out of practices. I have worked in the group health care field (consulting and software) since the early 80s and recognized such behavior was frequent and showed up in the patient satisfaction assessments we made for a variety of group health plans. I haven't been kicked out of a practice since 2003, when I started the mb12 since I can demonstrate "miraculous" results. My current docs have decided to assist me rather than be roadblocks to effective care. There was no possible solution until 1998 when mb12 became widely available commercially in the USA.

Methylation block is not a cause, but rather a result. It can result from taking cyanocbl, hydroxycbl, folic acid and maybe folinic acid, glutathione (precursors) or nothing at all. It appears to be triggered, when the person is sitting on the edge, by almost any stress that challenges the biology enough, whether illness, injury, toxins or even vaccination of any kind and by glutathione.

I have stated before that I see no evidence at all that methylation block or methyl-trap can even occur if the person is taking mb12 in the first place in the absence of glutathione (it can overcome any amount of mb12/adb12/methylfolate).

Looking at the info you have so far provided, it is clear you are quite deficient. Taking the adb12 in oral capsule form might help considerably as 100mcg/day will add up and start the body mitochondria working. There are specific cofactors that go along with this that can improve energy generation and reverse the "energy crash" in a matter of days or weeks. If there is CNS/CSF problems of low cobalamin levels, this will become far more apparent as the body symptoms start clearing up. Sarting the mb12, even at low doses will help considerably. After you reach a higher level of mb12 throughout your body the Metafolin will likely become quite tolerable. Again, if there is a problem that isn't an artifact of the methyl-trap, these folate deficiency symptoms will rise out of the surrounding symptoms like a small island only visible at low tide.

My biggest concern is that if you have CNS degeneration going on, and the CSF/CNS cobalamin deficiency found in research of those with CFS/FMS, is that this will not be stopped and will continue to worsen despite adequate body levels of adb12/mb12. That happened for me. Quicker recognition of the problem and knowledge of the treatment might have allowed me to keep full functionality in my feet and nervous system. As it is I am fighting a rear guard action that is only marginally holding the line against continued CNS deterioration. To quote a former VP, "It is a terrible thing to loose one's mind".

 

[LaurieL]

And last but not least.

Freddd
Join Date:Jul 2009
Location:Salt Lake City
Posts:1,092

Originally Posted by Mr.Kite
Hi Freddd, thanks for the explanation of the methyl trap and the detailed comments on dosing. I am definitely having a lot of increased anxiety and trouble sleeping last night from the 1/4 b12, so it looks like I'm going to have to proceed really slowly. I have a couple of other questions if you don't mind.

Reading through the thread, I came across the info on l-glutamine. I was actually taking l-glutamine at the time of the lab test, about 4-6 grams daily, and I had been taking it at that point for about 6-8 weeks. Could that have caused the serum B-12 deficiency, then leading to the scenario you describe with the folate? And if that is the cause, how long do you think it would be likely to take for the B12 to normalize again, whereupon I assume the folate levels might then show up as decreased?

On the adenosyl b12, I am completely intolerant to taking folate, so the Country Life is out. Are there any other recommended brands that don't have folate? Have you ever tried this brand, or heard any reports about it?

http://www.iherb.com/Anabol-Naturals...ules/9849?at=0

As I mentioned, I'm getting the methylation panel as soon as I can get to the blood draw. Should I wait to start any of the b12 protocol until after getting the panel? Can b12 affect the results of the panel and give skewed results, like apparently it can with the serum vitamin levels? If so, how long is a good washout period with no b12 or methylation protocol supplements? I guess this ties into the first question, too, because at $350 a shot, I don't want the results to be screwed up because I should have waited another week after going off the glutamine.

thanks

Hi Mr Kite,

On the adenosyl b12, I am completely intolerant to taking folate, so the Country Life is out. Are there any other recommended brands that don't have folate? Have you ever tried this brand, or heard any reports about it?

I have had a lot of people ask about this brand but no reports from anybody with the deficiencies we are dealing with. It is targeted at the body builder group and this is where I first learned of adb12 and it restoring the ability to form muscle. I had substantial muscle atrophy during all this and was not able to increase muscle until I started the adb12.

The brand you mention is a 10mg oral supplement. That would mean that the usual absorption with malfunctioning digestive system would be about 100mcg or maybe 110mcg if everything is working right. At 50 cents or so per capsule as opposed to 10 cents per 3mg sublingual that would yield up to 750mcg absorbed, it would not have the same effectiveness or cost effectiveness. In this form, if you needed to get the adb12 into the CNS/CSF as I did, instead of 51mg nominal dose, giving 7.5-12.5mg absorbed which will penetrate the CSF/CNS, one would need to take a nominal dose of about 1000mg, about 100 capsules at once, to put it in perspective. If the glutamine was able to combine into glutathione and then if you have the methyl-trap going on, based my experience and others, it will take substantial metafolin doses to overcome the effects and allow the mb12/adb12 to be effective.

I am completely intolerant to taking folate,

What forms have you taken with what results that would have you say that?

As I mentioned, I'm getting the methylation panel as soon as I can get to the blood draw. Should I wait to start any of the b12 protocol until after getting the panel? Can b12 affect the results of the panel and give skewed results, like apparently it can with the serum vitamin levels? If so, how long is a good washout period with no b12 or methylation protocol supplements? I guess this ties into the first question, too, because at $350 a shot, I don't want the results to be screwed up because I should have waited another week after going off the glutamine.

Of course the results will be changed if you take mb12/adb12. That is the whole point, now isn't it? It can take a year or more after a dose to return fully to the previously terribly deficienct state even though a dose or two won't heal you. The magnitude of your response indicates extreme deficiency. What are "skewed" results. Who are you trying to prove anything to? Do you want to find your way through this maze or prove something to somebody who believes that these tests are worth as much as a plugged nickle?

Those doing "treat by tests" of this type have poor results. By and large a year or two later and nothing much will have changed. As methylation is only a small fraction of what mb12 does and has nothing at all to do with adb12, and mb12 will not function correctly for many of it's functions without the Metafolin, perhaps you need to change your hypothesis to one that can work for a substantial percentage of people instead of almost nobody. All of these tests are skewed in the first place, based on people chronically deficient of both active b12s, active folate and various other things as the norm.

If you move off of the "methylation" hypothesis and to a "correct deficiency symptoms" hypothesis everything will look different. When this and other tests show people they "shouldn't" take the things that can actually correct their problems, then there is something wrong with either the test and/or the interpretation.

If you have listed all your symptoms from the posted list of symptoms can you point me to them? If not can you do so which will allow a different discussion by seeing the categories your symptoms fall into, ie body-adb12, body-mb12, CNS/CSF-ab12, CNS/CSF-mb12 and Metafolin body-CNS/CSF.

 

[LaurieL]

Back to topic.

Freddd,

You mentioned last week I believe about a peeling rash and then normal skin underneath. I forget where you mentioned that happened, but ironically....

I am now experiencing just that on both sides of my nose. This is different than the rash and lesions that plagued me in the first six months. It began as hyperkeratoic, itchy, but no redness. Then it began to burn, and now as of last night, on the creases on both sides of my nose, a "crack" appeared and the skin is "peeling". It is still kinda hyperkeratotic still, but it no longer itches or burns.

You mentioned that some seem to go through an eczema type of reaction including yourself. Do we know why that is and how it relates to the active b's and folate?

What concerns me is two fold. Dr. Ritchie Shoemaker has found correlations in his mold patients to MarCoNS (Multiple Antibiotic Resistant Coagulase Negative Staph) and lack of response in treatment to mold exposure patients and Lyme patients. I have also worked in a hospital with immune compromised patients for almost two decades. What concerns me, is that I very well could have this MarCONS or MRSA. Although the peeling reminds me of these two, the behaviour does not. Have you yourself considered these possibilities as well?

Laurie

 

[Freddd]

My experiences with cyan have been too limited to draw any conclusions; I never took it in large amounts or with active folates or other supportive cofactors. Actually, my early experiences with only sublingual methyl produced no noticeable effects whatsoever. As you have detailed, there could be a number of reasons for this. Hydroxocobalamin did produce significant effects when I took it concurrently with the other components of Rich's protocol, so I do consider it effective. After starting methyl and adenosyl; however, three months or so after starting Rich's protocol I pretty quickly experienced the greater bioavailability of these forms. At first I alternated hydro with methyl and adeno, and I eventually worked up to taking the active forms exclusively. I today correllate these active forms with more vigorus detox symptoms and based upon the sulfur headaches, temperature and metabolism changes, and the amelioration of symptoms, what I presume to be is more efficient methionine synthase activity/glutathione production/etc.

Your question about the relative efficacy of adenosyl to methyl is a good one, but I don't have a good answer. First you have to understand that I am comparing 1 mg methyl to 3 mg of adenosyl (your brands), so we are not comparing equivalent dosages. Still, I've actually noted that quite a few others who post on this forum also report that adenosyl is as or more effective, in some cases, than methylcobalamin. I think they produce somewhat different responses, but my experiences are dissimilar to what you have reported. I would argue that the methyl is "spiky", it has a more dramatic effect than adenosyl, and can sometimes result in what I would characterize as a more intense and adverse symptomatic response. In this regard, the more intense effects of methyl seem to cause somewhat more fatigue, which might explain the preference for adenosyl reported by some--perhaps these same people have greater toxic burdens. I also generally experience more brain fog from methyl vs. adenosyl. Presumably the more rapid saturation of methyl as compared to adenosyl, which requires conversion, explains this outcome. So, perhaps a more gradual infusion is more tolerable. Regardless of the explanation, I don't have any doubts that adenosyl is being sufficiently converted to methyl in my situation because it is working independent of supplemental methylcobalamin. Actually both work, and are considerably more "potent" than hydroxo, but I believe hydroxo has its uses too: It is more gentle.

Hi Vegas,

A few comments. Having rethought everything because of my very recent realizations about the forms of folate and their effects I would say that the balance between the various items is important. First the mb12 affects about 600 items and adb12 affects 2, which is going to be a large difference. Various things I have read and the experiences of quite a few persons indicates that while individual balance is different, the sweet spot appears to be somewhere between 3x to 10x as much mb12 as adb12. My recent understandings about folates also indicates that this needs to be balanced with a suitable amount of Metafolin. As the other forms can induce folate deficiency in some unknown percentage of persons (perhaps 50% of general population), especially those that experience "detox" with folic or folinic acid, I can't any longer suggest that people take folic or folinic acid. However, by my experience a small amount of folic acid appears tolerable if there is enough Metafolin to offset it, again balance is important.

Adenosylb12 has only two know functions, certain interactions with fatty acids in the formation of myelin and occupying mitochondria to generate ATP. It has NOTHING to do with "detox". To be converted to mb12 requires a limited amount enzyme, same as hydroxycbl, and it competes for methyl groups just as hydroxycbl and cyanocbl in that mode. So again, very little adb12 can convert to mb12. Because of the slow turnover of adb12 in mitochondria, many people can reach adb12 equilibrium with a single dose per week.

The headaches, temperature and metabolism changes are quite usual startup responses to mb12/adb12 becasue they affect neurology, neurotransmitters, muscles and all that for known and frequently experienced reasons. Temperature and metabolism changes happen because deficiency changes these things considerably and they can't become normal without changing, and then the body needs time to readjust the thermostat. That can take a month or more AFTER saturation is reached. Headaches are also a usual b12/methylfolate deficiencies symptom for all sorts of reasons and as the nerves, muscles and blood vessels heal they are often more intense for a while, along with intensifgication of many other symptoms. As this happens in just about everybody recovering from b12/methylfolate deficiencies regardless of "toxin" status, the toxic hypothesis only slows down healing by avoiding the effects of healing.

The problems may actually be with folinic acid causing enhanced methylfolate deficiency which is typically called "detox" and can go on indefinitely with continued usage of folinic acid.

 

[Joopiter76]

HI to all,

I can confirm that with the folates. If I take large amount of folic acid I feel weak. This is because the different folates compete for transport into the cell and so large amounts of folic acid will dislodge methylfolate. This may be the reason why there are some reports about cancer and folic acid. If you cant generate enough methylfolate and then ad in folic acid the situation becomes worse not better because now methylfolate becomes dislodged even more.

Does anyone experience bowel changes with more Methyl-B12 and methyl-folate? Or the methylation protocol? does anyone experience yellow stool. Many autisic children have this and this is what I have as well.

 

[Freddd]

Back to topic.

Freddd,

You mentioned last week I believe about a peeling rash and then normal skin underneath. I forget where you mentioned that happened, but ironically....

I am now experiencing just that on both sides of my nose. This is different than the rash and lesions that plagued me in the first six months. It began as hyperkeratoic, itchy, but no redness. Then it began to burn, and now as of last night, on the creases on both sides of my nose, a "crack" appeared and the skin is "peeling". It is still kinda hyperkeratotic still, but it no longer itches or burns.

You mentioned that some seem to go through an eczema type of reaction including yourself. Do we know why that is and how it relates to the active b's and folate?

What concerns me is two fold. Dr. Ritchie Shoemaker has found correlations in his mold patients to MarCoNS (Multiple Antibiotic Resistant Coagulase Negative Staph) and lack of response in treatment to mold exposure patients and Lyme patients. I have also worked in a hospital with immune compromised patients for almost two decades. What concerns me, is that I very well could have this MarCONS or MRSA. Although the peeling reminds me of these two, the behaviour does not. Have you yourself considered these possibilities as well?

Laurie

Hi Laurie,

I have pinned down when this happens. It happened initially when I started mb12 and several times when I have what I have now identified as a methylfolate deficiency setback which had been mysterious happenings until first glutathione and now what I have learned/experienced with folinic acid and folic acid. The epithelial tissues, which includes skin, are rapidly reproducing cells, constantly replacing the surface. My working hypothesis on this is that with either an mb12 or methylfolate deficiency the cells don't divide properly and various things go wrong, such as acne type lesions, eczema and other impaired cell formation problems. It appears that this impaired layer of skin is replaced when it becomes possible and the ill formed layer sloughed off. The timing of the occurrences I've experienced has been 100% after induced folate deficiencies or the initial correction of the mb12.

 

[Vegas]

Couple of things.
I haven't appreciated a noticeable difference between different ratios of methyl/adenosyl.

As to your point about folates, you may be on to something there, especially in light of what is know about the competition among folate sources. Metafolin is the gold standard. I took metafolin from day 1, so it was always available thus I can't compare effects of a disproportionate balance. I'm going to cut out folinic acid and the folic acid I'm getting from the Adenosyl to see what happens. Do you have a replacement brand of adenosyl you could recommend--one without folic acid? I certainly do not understand how you correlate methylfolate deficiencies to what people perceive as "detox" symptoms.

Regarding the role of adenosyl: I don't know precisely how much adenosyl is converted to methyl, but i can tell you that I get results from taking it exclusively, althought I generally take both. I would argue that you may have oversimplified its role in fatty acid metabolism. One possibility relates to the fact that Methylmalonyl Coenzyme A mutase uses adenosyl as a cofactor. In this regard some benefits could be ascribed to the relative abundance of adenosyl to facillitate this reaction. Methylmalonyl Coenzyme A mutase is involved in the catalyst of Methylmalonyl-CoA to Succinyl-Coenzyme A, which is comprised of succinic acid and Co-Enzyme A. As I suspect you know this enzyme is critically involved in fatty acid synthesis and the Kreb's Cycle...core problems in CFS.

I mention this in part because of the small number of supplements that provided benefits over the past few years, one that clearly benefitted me long before any B12 supplementation was high-dose Pantethine, which of course is a highly bioavailable form of b5 and a precursor to Co-A. The benefits could be attributable to its role in the steriodogenesis of adrenal hormones, or perhaps it was due to its role in the Kreb's cycle and fatty acid metabolism, regardless, this process requires adenosyl. My basic point is that plainly I have no idea precisely what is happening, but I can see that these processes are highly complex, inter-related, and dynamic. In this regard I think to say that adenosyl usage has no connection to detox is unfounded. If adenosyl can repeatedly, by itself, produce reactions, that are suspended when it is discontinued, I think there is a good chance its use has a causative role.

Are you suggesting that what I perceive as "detox" symptoms are purely correlated to a vitamin deficiency and are not side effects of increased detoxification and immune response? Do you not see a role for enhanced methylation and improved immune response? Is it your view that taking methyl/adenosyl/methylfolate does not have the capacity to increase glutathione and improve the functioning of the immune system? Do you think that these changes would take place without any symptomatic response? Have you chelated metals? Experienced a herxheimer reaction from antibiotics or antifungals? I would argue that most have some degree of neurological healing, but the etiology of the symptoms is much more complex and for those with CFS necessarily involves some degree of detoxification.

 

[Vegas]

Yes, this has been my experience

Does anyone experience bowel changes with more Methyl-B12 and methyl-folate? Or the methylation protocol? does anyone experience yellow stool. Many autisic children have this and this is what I have as well.

Not necessarily related to increased dosages of the supplements, but it can be. More importantly, this happens when the metabolism turns up a notch. In my opinion, this yellow or orange stool is caused by large concentrations of bile. Sometimes this will be associated with frequent bm's, again something that happens when you "dump" bile. While speaking of something considered TMI (too much information) sometimes this is accompanied by noticeable burning from the bile acids.

Previously you asked about temperatures. I will say that I have been making forays into higher temperatures. I experience dramatic improvement in my symptoms when the temperature is elevated. It is still fluctuating, but it finally budged from 96.8. A few times it has been lower, but I still felt better. Back when it was in the 95 range, I was completely miserable.