Hi Shanna,
Do people experience the same sort of detox reactions on this protocol as in the Simplified MCB Protocol?
If the simplified MCB protocol is the one Rich talks about with the Hycbl, then the results are quite different.
With the active b12s most of the startup responses are not "detox" reactions for starters. While some people may have some detox reaction, there are a whole lot of startup responses that have nothing at all to do with that. When starting the adb12 for instance, 100% of the startup response is the effects of the mitochondria starting to function again and generating ATP. That is just about the only thing that adb12 does. The more severe the fatigue and lack of energy, usually the more intense this startup is. Most people have only a few days of adb12 specific startup which is clearly evidenced if the adb12 is started after the mb12. Adb12 does not supply a methyl group and if the only one given would probably deplete methyl just as Hycbl and Cycbl do.
With the hycbl many symptoms continue to worsen for a year or more. Virtually all of the symptoms are called "detox" by many people but they are also b12 deficiency symptoms that worsen becasue Hycbl is NOT mb12 and only helps about 1/3 of the symtpoms that mb12 helps. Those symptoms that worsen indefinitely with hycbl are usually gone in months with mb12. WHen people are taking glutathione or precursors and have "glutathione detox reaction" (pretty common), my experience was that every symptoms listed as "glutathione detox reaction" were actually a severe induced methylfolate deficiency and mb12/adb12 deficiencies and start going away withon hours of taking large enough doses of Metafolin, mb12 and adb12. I even had mb12 and adb12 startup responses all over again though of short duration as I inject mb12 and went back to saturation within days. I developed all these deficiency symptoms despite my continued use of mb12 injections, adb12 and Metafolin during the glutathione (precursor) trial. I had to increase the dose by 4-6x to get the indiced deficiencies back under control. Others have had the same effect with glutathione and how to repair the socalled "glutathione detox reaction". It's very obvious that "detox" is a convienient term for certain not understood reactions that have nothing to do with actual detox.
The major startup responses usually come from mb12. The first thing it does, in minutes to hours, is change how the nervous system works. It almost immeditately starts resporing lost functionality. This is perceived as unpleasant mostly as all the many neurological (all aspects of neurological system, peripheral and central) symptoms, many of which people were unaware of as they crept up slowly over 20 years, become very apparant. Nerves that had become slowly pretty numb spring painfully back to life and muscles and things start reacting. At the same time cell division picks up as there is now enough mb12 for that to happen and all sorts of tissues start healing. My burning tongue, burning muscles and burning bladder stopped burning in the first 10 days.
While some people attribute these things to "detox" there is very little evidence that is at all common. There are a set of common startup responses that most people have some or all of. So either EVERYBODY with visible or occult b12 deficiencies of a certain severity has "detox" symptoms or almost nobody has them. Those that become concerned about startup responses and call them "detox" and stop the mb12 are just as sick a year later. Those that put up with the startup responses and continue titrating have about a 75% reduction of affected symptoms after 1 year, assuming they add all the needed cofactors. After a year I was quite ready to start rehabilitation which is an entirely different thing. A body inactive for 17 years can become quite debilitated. It took me a year to work up from being able to walk 600 feet to 5-6 miles. At first I increased the distance I walked each day by one house lot along the street. An increase of 100 feet per day for 50 days is a mile.
So do people tend to get worse before experiencing positive benefits? Do you start out with small amounts and increase?
My lifelong depression started lifting after about 15 minutes after that first mb12 went under my tongue (by the Rolling Stones?). After 1 hour I had enough energy to walk up a flight of stairs normally for the first time in 16 years. However, all my symptoms were perceived far more intensely in exquisite detail. However, as that was also accompanied by the start of brainfog lifting and seemed connected, it wasn't "bad". Some aspects were unpleasant. Remember though, many of the things are just changes in perception, an increase of intensity becasue the nerves are suddenly working better, well enough to perceive all the damage. The things that exploded into awareness most were also the first things to heal.
I started with a 1mg sublingual which delivers about 150-250mcg to serum in 45-120 minutes. Over the next 4 months I titrated up to 20-25mg sublingual/day (delivering about 4-5mg to serum) taken in divided doses throughout the day. After 3-4 months of startup it fell off in 1 week as I just took more and more mb12 saturating the system. The more I took the less effect each tablet had until they ceased to be any reaction at all and everything stabilized. From that point on symntoms got progressively better and milder. After 9-12 months I was able to discontinue or reduce most of my medications. The neurological pain was 99% gone. My allergies and asthma was gone. The burning bladder was gone. The IBS was reduced and as soons as I got rid of milk went away completely. Before the mb12 I was sensitive to everything and milk was no different. After mb12 it was the only thing remaining. The constant nausea and vomitting was gone. The waking up at night with acid shooting up my thoat was entirely gone. I had exercise tolerance back. My muslces started groing with exercise. It took a few more cofactors to finish the job but looking at my muscles now you would never know that they were mere shadows of themselves 7 years ago.
Hi Freddd,
I want to start out by admitting that I have not read all 1,636 posts on this thread. I've read a good many, but undoubtedly I'm missing some key points.
That being said, your comments here are not consistent with my own experiences at all.
I started out on my detox journey by taking a "sprinkle" of FolaPro (5-MTHF) and 1000 mg of sublingual hydroxy B12 per day. This was back when I was living in my moldy house. This gave me an insane detox reaction that made me sick enough to be listed in the "Adverse Effects" section of Rich's revised paper.
A while after I moved out of my moldy house, I was able to take Rich's recommended doses of the supplements with substantial detox that was at a level that I considered to be safe.
I continued taking 1/2 pill of FolaPro (the Actifolate seemed to be unimportant or maybe counterproductive) and increasing doses of sublingual hydroxy and then (very occasionally) 1000-5000 mg sublingual methyl B12.
For 2 1/2 years after moving out of my moldy house, I detoxed continually. About a year and a half of this was in the most pristine Godforsaken deserts that I could find. Five months of this was in a tent. The rest was in a super mold contamination free RV, sleeping in a tent when feasible.
The intensity at which my system detoxed was dependent on a) the extent to which my environment was pristine with regard to toxic mold/biotoxins and b) the amount of cholestyramine and/or detox-promoting supplements I was taking. If I was taking a lot of stuff that promoted detox and was in a clear environment, I would go into a state that Erik Johnson (my mold mentor) describes as "zonked-out immobilized semi-comatose groggified." Lots of very icky (to put it mildly) stuff would come out of my body through all channels (including sweat, breath, saliva and - occasionally - vomiting as well as the usual routes).
As a result of a variety of things (including Valcyte and neural therapy as well as extreme mold avoidance and detox) my system got strong enough for me to try pushing detox even further. By that point most of my ME/CFS symptoms were gone as long as I was clear of mold/biotoxin exposures, and my reactivity to those toxins had gone down considerably.
I thus cautiously started on high-dose methyl B12 injections. I started with 1 mg and then experimented with working up.
Now I'm doing 10 mg injections as often as I can tolerate them, which is a couple of times a week. The toxins have been POURING out of my body as a result. For a day or two after each injection, I go into that "zonked-out" state. The intensity of my immobilization and "groggification" is at least as strong as it's been at any time during this journey.
If I don't take a lot of csm or some other binder, everything in my intestines moves through as quickly as possible (apparently a defensive move to keep the toxins from re-absorbed), which is precisely what happened at the very beginning when I tried Rich's supplements. (This was just before my colon got blocked up entirely, which is the adverse event reported in Rich's paper.)
In summary, this whole experience is precisely what happened to me on Rich's protocol.
What I'm passing through is noticeably and (I think) undeniably toxic. It only was after I started daily coffee enemas that I stopped feeling so toxic (like a continual very bad hangover even when not wholly comatose).
I've now been doing this for about six weeks. The reactions that I'm getting to each methyl B12 shot have become less intense by the week, and my remaining ME/CFS symptoms (not that many) have decreased. So I hope that I'm almost at the end of this road.
(I don't think I'll ever be able to be around much toxic mold or other biotoxins, but it's getting to the point where my reactivity is not so severe to prevent me from living a normal life.)
I thus think that what you're saying is not true for me. And since I am as classic of a Canadian Criteria ME/CFS patient as they come, I'm not sure that what you're saying would be true for a lot of other people here either.
I am especially concerned about your comments that people should be able to get well from ME/CFS without detoxing.
It's not my impression that this is true, and it's not been what I've seen in other people with classic ME/CFS who have gotten well.
This particularly concerns me because of my and others' experiences that our bodies only release toxins when we are in an environment that is only moderately clear of toxic mold. It is my belief that insofar as the system is in a bad environment, it clings to toxins for dear life, so that the combined burden of newly inhaled and released toxins isn't overwhelming.
I think that if people with classic ME/CFS aren't experiencing detox symptoms, they should suspect that they are in a bad environment. Insofar as they don't check out that clue, they may not only fail to get better but may continue to decline as a result of being in the dangerous environment.
Mike Dessin, who has recovered from near-death classic documented ME/CFS as a result of mold avoidance, neural therapy/detox, and various other treatments, had an experience with a methyl B12 IV when he was living in a very bad environment. This knocked his moderate ME/CFS down to being very severe.
Mike and I agree that while methyl B12 can be a very good thing for people who are in good environments and are ready for it, it (like all other detox treatments) can be very dangerous for people who are in bad environments.
Suggesting that if people get a detox reaction and then get extremely ill from taking a lot of methyl B12 (as happened to Mike) they take even MORE methyl B12 seems to me a risky business. And while I don't disapprove of people taking risks (I've taken lots myself along the way), maximizing the likelihood that those risks will not result in precipitous slides into greater disability and then death (which is where Mike eventually found himself) seem to me to be prudent.
Thus, I'd like to encourage people to consider the role of toxic mold in their environments before following your suggestions.
I can't speak to your own experience. Maybe your condition was not classic ME/CFS. Maybe you were in a good environment when you pursued this (though I still find it perplexing that you didn't experience any classic detox symptoms).
But I can speak to the experiences of myself and the only half-dozen people who I know for sure had classic severe ME/CFS who have recovered from this illness (most of whom I have visited). Their experiences have been so similar to mine that I do not believe it can be a fluke.
Perhaps you will tell me that Adb12 is the magic bullet that will change everything. I'm willing to try it, if someone gives me instructions on how to get it.
It had better be soon though, before the intense detox that I'm experiencing now comes to an end.
Thanks much for discussing your own recovery on the board. We need all the info we can get, and I'm really happy for you.
Best, Lisa
