Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.
It looks like I'm able to post again...finally!!
I tried a bit of folinic and didn't notice a difference. Maybe I didn't use enough or the effect was too subtle for me, things need ot hit me over the head before I notice...though I am much improved at paying attention these days!
I hope you're starting to feel better. I finally had the chance to respond on the wrongdiagnosis forum. Consider looking into your plasma amino acid levels, mine were extremely low despite a high protein diet. Adding in a prescription mix (not glutamine or NAC) that was tailored to my plasma levels made a tremendous difference in my moving forward.
I went back and forth about the types of carnitine and for quite a while did not feel there was a difference. After a recent reevaluation I can say that the carnitine fumarate is notably better than acetyl or tartrate, for me anyway. Also, my first day or so on it did leave me a little hyped up feeling and the tmg helped to counter this.
Do you (or anyone here) have any suggestions for a stomach acid replacement other than Betaine HCl? I found this one liquid HCl by nutricology but it doesn't seem nearly strong enough, more than a third of a bottle and no burn and poor digestion noted. I typically require 6-7 Betaine HCl tablets per meal.
I'm concerned the high levels of TMG I am consuming may be hindering some of my recovery. I was making strides in Dec 09 with neurological healing - I have two numb toes on each foot and was regaining feeling in each. I started the Betaine HCl and the numbness reversal seemed to stop. I recently tried to switch to the liquid HCl for several days and noted an increase in tingling and feeling in areas that were previously numb - I was trying this due to something I'd read that you wrote about the TMG in the Betaine HCl, though I can't remember the concern, that made me think it would be a good idea to not be taking so much...
Any thoughts from anyone appreciated!
I hope Rich answers on this one. I have found that following what improves and returns the neurological functioning towards normal appears to be a good guide. What makes it worse is probably doing other things you don't want. It's following the sometimes subtle clues that makes for continuing improvement. A while after I started the mb12 I was despairing that it just wasn't going to be the whole answer. However, I followed up on one clue after another at what improved things and trying the cofactors others had sucess with worked well for me. It's often a balance that falls off on either side of an optimum.
hi Freddd and Rich, i missed the earlier posts regarding this. Can you please restate the context for Freddd's trying this product out. ? I see they do sell it at iherb.
Somewhere previously, I believe this thread, Rich explained how there is more than one form of active folate used for different purposes, perhaps 2 months ago, and that folinic acid leads to a different form from Metafolin. It sounded reasonable to me and like it was worth a try to see if it improved my folate response. I am putting together my first order since then.
I would say yes b12 can do this. According to Rich Van K and Amy and basically the whole DAN! movement..our methylation cycles are stuck at methionine synthase and we need B12 and folapro to get it over the hump.
The yasko ppl would tell u b12 drives detox.. and 3 yrs into this.. I notice that a couple fo hours after taking B12 I get mentally fuzzy and have to take binders or chelators to alleviate those sensations.. I assume they are mopping up heavy metals mobilised by methylation.
One reason Amy yasko likes hydroxy over methyl is that it drives teh cycle slower.. = less detox.. since hydroxy has to be converted to methyl.
You don't say what kinds of b12 you are using?
Maybe you need to cut back or fool around with different varieties.
The only short-term stomach acid replacements that I'm aware of are betaine-HCl, the Allergy Research Group HCl solution, lemon juice and apple cider vinegar. People who use lemon juice should use a drinking straw and flush their teeth with water afterward, because the citric acid chelates calcium and can damage the enamel on the teeth. Apple cider vinegar is not as strong an acid as lemon juice, but some people have reported that it helps them.
The issue with betaine-HCl in CFS is that betaine (aka trimethylglycine) stimulates the alternative BHMT pathway from homocysteine to methionine that is present in the liver and the kidneys. If this alternative pathway is stimulated too much, it may prevent the methionine synthase pathway, which is the one that is partially blocked in CFS, from coming up to normal operation. It's important to get this pathway up, because it is linked to the folate metabolism, and that in turn influences the production of DNA and RNA for new cells. When the methionine synthase reaction is operating properly, the combination of the methylation cycle and the folate metabolism produce a proper balance between synthesis of new DNA and methylation of DNA molecules, which controls gene expression. The methionine synthase reaction also regulates the entire sulfur metabolism, which is important for controlling oxidative stress.
Over the longer term, I think that what is needed to restore normal production of stomach acid is to get the zinc level up to normal and to restore the function of the Krebs cycle, which produces most of the ATP. The parietal cells in the stomach, which produce stomach acid, have a need for zinc, both for zinc fingers that are needed to express the proton pump genes, and also as a cofactor for carbonic anhydrase, which reacts carbon dioxide with water to produce carbonic acid, which in turn ionizes to supply the hydrogen ions needed for the stomach acid.
ATP is needed to power the proton pumps, which must work against a large gradient in pumping hydrogen ions (protons) from the parietal cells into the lumen (open space) of the stomach. In my hypothesis, the Krebs cycle is partially blocked by oxidizing free radicals that are allowed to build up because of glutathione depletion. To get glutathione up on a permanent basis, the partial block of methionine synthase must be lifted. That's where the B12 and folate come in.
Magnesium is also needed, for the utilization of ATP. Intracellular magnesium is low in CFS because of glutathione depletion, so treating the methylation cycle should help with this, too.
Well you realise that that Source Naturals supp contains folic acid as well as methyl and adenosyl right? So if you're taking addtl folapro and or folinic acid you'd be taking a whole lotta folate.
That could be rough to handle.
Also amy yasko doesn't like folic acid cos she says it competes for uptake with folapro.. and folinic... just fyi.. for when you reorder.
Hi, DrD and freddd.
Folinic acid is normally convertable into forms of folate coenzymes that are not accessible using 5-methyl tetrahydrofolate unless the methionine synthase reaction is running well, to convert it to tetrahydrofolate. In CFS, the methionine synthase reaction is partially blocked, so this conversion doesn't go as fast as it normally would.
Other coenzyme forms of folate produce thymidylate, which is needed to make new DNA, and they also produce components of the purines, which are needed for both DNA and RNA as well as other important substances, such as ATP, and finally they also assist in the conversion of histidine to glutamate, which is partially blocked at figlu (formiminoglutamate) in CFS.
The DAN! doctors use folinic acid for treating autism, and Amy Yasko uses both folinic and FolaPro (Metafolin or 5-methyl tetrahydrofolate). In my hypothesis, autism and CFS share the same problem with the partial methylation cycle block and glutathione depletion, so the same treatments are effective for both.
I think there is an advantage to supporting these other uses of folate while the methionine synthase reaction is still struggling to come up to normal operation.
Folapro is L 5 methyl tetrahydrofolate I believe...one of the bioactive forms of folate that folic acid is converted into ...more bioavailable and easily used by the body.
Ditto Folinic Acid.
Methyl and adenosyl are the forms of b12 your body needs as fredd points out in this thread.. but hydroxy might be more tolerable....for reasons i mentioned.
Fredd has other ideas and he and rich have hashed it out repeatedly on this thread...
I deleted a few of my last posts. I thought it would be wise to go through some of this thread before asking anymore questions.
After checking through the thread a bit more, I don’t really see how anything can be fully concluded. There is such a long list of supplements that one would be taking, that improvement may not even be the result of supplemental B12. I mean it’s entirely possible that many people could feel improvement just taking the “Essential” + “Cofactors” (quoted below). My point isn’t that the entire treatment plan won’t help people, but rather that it’s hard to see just how much the supplemental B12 plays a role in the polls. I mean this in terms of the number of people who found benefit from this plan.
I could be wrong here, but this is just my viewpoint after reading through more of the thread, checking out the poll, etc. Also both the noticed improvements, and any increase in symptoms, both can be viewed as positive progress.
Again I could be wrong, but it's just my opinion so far.
I have been following this thread for some time now. This is all very interesting and something that I can relate to. I was recently diagnosed with B 12 deficiency. Please check your inbox. I sent you a PM.
Thank you to Freddd and Rich for all this great info. I will continue to follow.
It's Shelly from FAVC! I sent you a PM. Glad to hear you are doing better!
Tal, All I've got to say is that the whole deal is yes, very very complicated, but so is this disease. It would not take much reading on this thread to know that for those of us who added things one at a time and a bit by bit, well, we get to know what the effects of a thing are. And it would not take much reading on this thread to know that things that are crucial for some are detrimental to others, and that everybody has a different constellation of symptoms, and of reactions to this protocol.
My understanding is that this protocol has that in mind. The reason that there are so many categories and items on it is that some people will require some, other people will require others. As far as I can tell, the only way to figure out what you need is to try it out, starting with the absolutely critical supplements. It's a lot of work to do this, and it takes a lot of time to see even if it works (at least for most of us), like months. If this is something you want to try, it may involve that kind of investment from you. It may involve not knowing exactly what you're doing, because anything involving treatment for CFS/ME is an experiment at this time. Anyone who says different is lying.
As a former intellect-head I understand your desire to know, immediately, how this is going to affect you. But really there's no way to find that out without trying, and there's no way to halfway try it. One of the big lessons CFS is teaching me is that I have to be open to not knowing everything and experimenting anyway. Information comes more slowly and more organically that way. It also tends to be more complete.
There is a whole lot of info on this thread about B12 deficiency, from many points of view. You might want to keep adding to your stock of info by reading more. It takes a while to seep in and start to make sense.
Lena, I'm holding you in my thoughts and I want to hear about how things are going for you.
There is such a long list of supplements that one would be taking, that improvement may not even be the result of supplemental B12. My point isnt that the entire treatment plan wont help people but rather that its hard to see just how much the supplemental B12 plays a role in the polls. I mean this in terms of the number of people who found benefit from this plan.
Actually it is very easy to see the effects of mb12 and adb12. If a person is taking and has been taking all of the basics and even critical cofactors for years and they don't do diddly and their 200 b12 deficiency symptoms continue to worsen year by year and when suddenly those symptoms do an abrupt about face and start getting better immediately upon taking the adb12/mb12 the answer is incredibly obvious to all but the most obstinant.
We are not talking the interpretation of test results to verify the effects. We are talking about outright naked eye healing after years or decades of symptoms and illness that nothing else affects often starting within minutes of the first sublingual tablet. After 55 years of problems my response to it was so profound as to make very clear that my life was being immediately changed by mb12.
Seeing benefit from cycbl/hycbl is shakier. Outright healing rarely happens with that though it does correct some lab tests.
Last time I looked at the poll 3 people had replied and so long ago nobody had time to actually find out whether things had worked. Also, as many people won't give it a chance and bail as soon as they have startup responses, the people most likely to heal dramatically often bail out quickly so of course they are not going to see results. This is a noisy environment data wise.
If you "ask your question" with more precision you will get a better answer.
I dont really see how anything can be fully concluded.
Further you are looking in the wrong place to even begin to have the data needed for evaluation. You might go read http://forums.wrongdiagnosis.com/showthread.php?p=234498&posted=1#post234498 to read up on the results people have been on the active b12 protocol long enough for many to have esssentially recovered, returned to work and many who no longer drop in to say anything. Also, many there not having belief in "detox", dangerous levels of mercury from fillings and other such things they are more likely to stick with the active b12s through the startup period and have actual results. The beliefs people have very much influence their behavior and choices and therefore affect their outcomes in something like this. A person who believes that the startup responses are signs of danger and immediately drop the active b12s are not going to have results and will report a completely different experience than somebody else with the exact same startup responses who believes that those are signposts on the way to healing and so continues.
What would it take for something to be "fully concluded"? What are your criteria. I could easily, through a selection process assemble a group in which everybody would have results. At this point that would be easy. The problem is that it would elliminate most of the people who MIGHT have results from finding out IF they do.
I know a woman who was diagnosed with CFS for 4 years instead of the correct diagnosis of lymphoma becasue of her mannerisms and the way she came across to the docs, "Just another one of those hypochondriacs with yuppie flu". Once they settled on the diagnosis nothing could change their minds. I testified in a court case on this one as to the nature of the bias and mutitudinous errors in her medical records and the Independent Medical Examiner's exam that I witnessed. I ended up taking her to a neurologist I knew who was willing to overlook her mannerisms to get down to what was wrong. He was able to refer her to the person who ended up diagnosing accurately her problems. She did happen to be b-12 deficient too. One of the problems with the records is that the only data recorded by the docs were the items that backed up their diagnosis. We could prove that as I went to every medical appointment she had for 3 years keeping separate notes and even tape recordings of the entire appointments.
So would a study that had near 100% results allow you to be "fully concluded". I doubt it because you would just say "but you selected carefully". Of course so does any other research project. They want people that meet certain specified criteria. Of course being able to select that carefully might allow the matter to be "fully concluded" as it indicates knowing what to look for. Mb12/adb12 plus cofactors are not a panacea. They work very strongly and clearly for people with a group of certain very specific "non-specific symptoms" criteria that are very predictive. Serum cobalamin, homocystein and MMA tests are not predictive of who will and WON'T have results. So the many studies using those as admission criteria for use with cycbl and hycbl have predictably low levels of results, partly because those cobalmins work so poorly and partly becasue the tests of of low predictive value.
Everybody of course has their own opinions. My consulting clients have paid me to have opinions for them. I am willing to take performance based compensation for my opinions. Set up properly I can't loose as long as my opinions are correct. In fact depending upon how the crteria are written I might end up with 100% bonus by safely underguranteeing the performance level. For instance if I am sure that I can produce criteria X for 1 in 2 people out of a thousnad selected persons, and I can get them to agree to a guranteed performance of 1 in 10 with an incremental bonus for each percentage over that I can do very well. If however if I am fundamentally wrong and the performance is actually 1:1000 I wouldn't have much of a paycheck after taking out all the penalties.
So if you want to finance a study to test this protocol and pay me for consulting I will gurantee a level of performance, for a selected group, with bonuses for better performance as long as I can specify the subject selection requirements. In my opinion things are fully concluded enough that I would bet my fees on the performance under suitable circumstances. I would also bet my fees on a competitive comparision against any other protocols with a matched pair design selecting those that also meet the requirments for both variations, that don't use mb12/adb12.
Of course in the game of YOU BET YOUR LIFE I have won my individual bet against FMS/CFS etc. For you the question is whether you willl win that bet by being healed or loose it by continuing to be sick. I am literally the healthiest I have ever been in my life now at age 62. I would challange any other 62 or so year old who has had CFS/FMS for 20 or more years to a 5k race as long as we had 3 months to train for it. The first challange is finding ANY other 62 year old with a history of CFS/FMS dating back to 1987 or earlier who is now recovered enough to be up to doing or training for a 5 k race.
I do understand your concerns. For the record I have spoken with Fred at length on the phone and I believe his claims are real. Just so you know, I am a credentialed and published researcher in my field (human training/cognitive systems). I think what you are looking for is second stage research but this is an early stage finding Fred is presenting. In other words, at this point we just have some powerful case studies to look at, namely Fred and a number of people who have benefited from his protocol. Also the people who have benefited from Rich's protocol. In know Fred has tried to interest CFS doctors and researchers in pursuing this therapy but so far they are not interested. This is a complex and somewhat non-traditional approach to CFS, and given the paucity of research funding for CFS I can understand why researchers are looking for 'hot topic' areas such as retrovirus. In fact even with that apparently there is little new research funding. Anyway, there SHOULD be studies out there looking into the effect of inborn and acquired errors of metabolism like the B12 metabolism problems in CFS, as Fred and Rich talk about it. But there are not studies yet outside one presentation and paper by Rich at a conference and a few studies of methylation IEMs in autism.
Also, Fred is not a researcher by profession so naturally has not run formal studies. I think we can be grateful to have two strong and independent minds like Rich's and Fred's looking into this very complicated area of biochemistry problems in CFS. Rich is a physical chemist and Fred is a systems analysis, and they are doing original work here, very basic research. So not every CFS patient will be able to follow this and benefit, this is not yet at the level of a clinical forumula. But CFS patients who are able to self-titrate doses and monitor symptom changes, and also who are able to follow the logic of the specific depletions and metabolic problems, I think can benefit. I am just one month into this protocol, still ramping-up, but already have noticed real improvements, but it certainly is complicated and the more experience I get the better I understand what both Rich and Fred are talking about.
If you are considering this, I suggest reading the book Could it be B12 and then reading Fred's posts on the 'wrongdiagnosis' forum and Rich's papers. That book is not detailed enough for CFS but I think gives some good background, it helped me realize that B12 metabolism problems really can be part of serious diseases, so now I take B12 for CFS much more seriously.
I most definitely am not a true believer. I am a very skeptical person. Fortunately no faith is required. You can perform your own test. In fact I'm tell you what criteria to use to include yourself in as a likely responder or not, and then it is up to you to do the work. First of all compare 100% of your symptoms to the list at the beginning of this thread I believe it is. If you can't find it I'll post the most recent revision. First list all of your symptoms by decade of life compared to that list of symptoms based on if present at any time during the decade. Use the list to help spark your memory. Then make a second list of all your symptoms that are not on the list of symptoms.
After you make the lists I'll tell you what to look for. Then if those things indicate a liklihood of being response to active b12 a single dose of a combo of 5 star mb12 and adb12 (1 of each kind of tablet under lip for 45-120 minutes) and by 120 minutes, if you have ANY perceptable response the probability is appraoximatly 100% that you will respond to the protocol. You see, cycbl or hycbl will have no noticable response in that time period and usually no noticable response at all. People without symptoms generally have no response at all as they have no symptoms to change. I have already run this kind of trial on about 1000 people in person and watched their responses after taking their histories. As you will have already had a response to adb12/mb12 before starting the protocol you know withourt a doubt that you are a responder. Of course there are those who MUST have a certain cofactors to respond, most espcially Metafolin, but often that will increase response but it's lack won't prevent it 100%. Also there are those whose symptoms are such that they only respond over time. This kind of test gives an estimated 25% false negatives and 0% false positives. It won't catch everybody who might respond given some time or cofactors, but it catches a large percentage of the worst afflicted.
I need to run 1000 people again and this time not be so sick as to not track the data well. I need to work out what are the most significant symptoms and combinations. I might be able to narrow it down to the top 50 or so with a little work.
Me, I was totally desparate 7 years ago. My life; everything that mattered, had been taken from me by some horrid undiagnosable disease. I ended up loosing my wife, the childhood years of my children, my business, by social relationships, my friends, my health, my retirement savings, etc to it. I ciould no longer see well enough to read many days, I had no balance, no energy, constant nausea, feet going numb, loosing motor control of my legs and feet, position sense, etc. If it had continued much longer I would have ended up in a wheelchair in a diaper, unable to read, unable to track a movie, unable to remember. I had congestive heart failure so it was unlikely to continue much longer.
I didn't have any faith in any of the many practtioners that assured me they had a handle on my situation. Not one did. They all took my money for no results. It was most educational in what is wrong with our medical system. The only practitioner that delivered any results worth his charges was my chiropractor for an old back injury. The pain docs at least relieved my sufferring a bit but made clear that they were not out to heal anything or figure out what the problems were.
If you are sufferring enough to be motivated to find something to treat your problems, go through the screening exercise and then the single challange dose. Then do a longer trial only after you have already demonstrated it could work. No faith required but some effort is.
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