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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks Dreambirdie
Like you, last time it took me ages to recover from `it`. If it was a healing crisis then I doubt it would have given me such a setback. I know now that my body was not ready for the methyl donors. Things are different this time as I did not get the `brightening` in the past. I really feel that cutting out PUFA`s has made a huge difference for me. I can only cope with saturated/monosaturated fats and keep my cell walls intact. I only heat coconut oil and ghee now.
Getting through it is often counter inturitive.
In my opinion the thing to do is get the AdoCbl, MECbl and folate going in a stable dose. Take care of titrating potassium and get that stable.
Neuropathies that heal are extremely painful and unpleasant. When they get worse they go from pain and it fades towards numbness. Getting better they start up from numbness to shooting pain, intense pain, slowly fading through varieties of pain until it becomes hypersensitive. Then a slow fade worwards normal if healing continues. If nerves are not taken all the way they start falling back immediately. There is no plateau. They are either getting worse or better and often shift around in a circle becasue they don't hold still.
sregan
I take 15 drops with my main meal. I feel better on it.
As I mentioned in the other thread you started about the SMP (Rich's Simplified Methylation Protocol), Rich and Dr. Neil Nathan's advice was to either lower the dose and/or take a day or more off. I wish I had a doctor who told me to take it easy and slow down. If you push too hard your health will get worse. Again, I don't know what's too hard for you. Only you can know that.I was thinking about the methylation turning on and off. If my MCBL or Folate runs out does methylation stop? Then restart the next day when I take the supps again?
I can't tell you what doses are right for you, but I would highly recommend you listen to what your body tells you more than anyone else and that includes doctors too. My health has gotten significantly worse from methylation attempts. Maybe you're not in as bad shape as I am and you can "push through". That hasn't worked too well for me. Ever since I got sick 15 years ago I've been trying to "push through" and that's only made my health worse.I know what you speak. The intuitive thing is to run for safety. Freddd has been encouraging as far as pushing through. I will push as much as I can tolerate when symptoms flare. I"m taking extra m-folate as he recommended and potassium. Today I feel pretty damn good I must say. I have already improved in several areas due to what iittle of the SMP I've done so far.
Since Rich helped conduct a methylation study on CFS patients using his methylation protocol with low doses of methylfolate, it seems that your definition of "healing" is lacking. 86% of the patients improved and 27% of the patients made a full recovery. We also see methylfolate, glutathione, SAMe, and adenosine levels increased considerablyHi Lotus,
To put it in other terms, as soon as the L-methylfolate is recognized as active, turn it off fast before you heal. Yup. That is the kind of advice a person who has NEVER healed though these things would say. What I am saying can ONLY be understaood through experience. As "detox" is low potassium and or donut hole folate insufficiency requiring MORE folate instead of less the vast majority of time, and my hypothesis is testable in days rather than years.
Also, people will never start up the nervous system if it is always intolerable and the same goes for ATP. Keeping a person in partial methylation block becasue it is more comfortable doesn't lead to healing. The longer the delay the less success at healing the CNS neurology. That is WELL validarted in b12 research. More damage becomes permanent the longer treatment is delayed. If I knew 10 years ago what I know now I might have 100% of my feet and leg neurology instead of 5-10%.
What you are advising might be fine for those with no CNS involvement or body neurological involvement, if you can find any, but for people facing serious and possibly permanent neurological damage, Rich NEVER even suggested that the SMP was suitable for that, and if you go look it up, did say several times that I was dealing with a whole lot of things he wasn't even intending to approach and didn't expect the SMP to do.
And BTW, my first methylation "attempt" was unintentional. I had been taking the Jarrow B Right b complex for over a year without any problems until they added methylfolate to the formula. So I wasn't even taking any B12 and that still caused major problems. This doesn't happen to everyone, but I've heard from several others who have a hypersensitivity to methylfolate. The symptoms were so bad I thought I had mercury poisoning because I started taking the methylfolate right after a tooth with an amalgam cracked. It took me almost 6 weeks before I figured out what was going on because I had never heard about methylation (I wasn't even a member of Phoenix Rising at the time), but luckily this forum has threads for both chelation and methylation. It was actually a quote by Rich (bless his soul) that clued me in to what was going on:
Lotus, my year long (first real) bout with CFS happened 2 months after an amalgam cracked and fell out. There is no coincidence as far as I'm concerned. This without a doubt was the cause of my CFS. Every time I've increased or decreased my Mercury load I've experienced a heightening of symptoms. I got my final 2 amalgams removed last June and symptoms got very bad. Andy Cutler calls this a "Mercury Dump" where the organs, that no longer have to store mercury that is coming in, will release it to the bloodstream for removal. When chelation happens patients are advised to take a steady dose to keep the levels steady. Once the mercury starts coming out it seems to be like a faucet opening. You got to keep the chelator in the blood to pick it up or your symptoms are going to be awful. I'm wondering if the SMP is also detoxing Mercury as the chelators would.
Rich says: "For people who suspect high body burdens of toxic metals, tests involving feces, urine and hair are available. High levels of some toxic metals can block enzymes in the methylation cycle and related pathways. Chelation treatment may be necessary to lower the levels enough to permit normal operation of this part of the metabolism."
So is it the chicken and egg? DO I chelate first to remove the Mercury interference of the methylation cycle? If I take supps to overcome the block what is that doing to the Mercury in my body?
If you can handle chelation, you might consider doing that first. But if you have already cleared a lot of the mercury, then it probably would be fine to proceed with the methylation supps. It's such an individual thing, and you really need to feel out what will work best for you.
I would like to (Chelation) but am reluctant since I have 5 crowns and no way of knowing if any Mercury is hiding under them. The SMP has been making me feel better. I would like to see if I can stay in that "zone" for a while. Any period of time when I feel good if it can be extended I really need right now.
Well, that could explain a lot. Assuming what you said is true with me, my first thought is that I have really bad luck that I'd be exposed to mercury (and possibly copper since amalgams have copper too) and then start methylfolate right afterwards. But if that didn't happen I never would have found out about Phoenix Rising or methylation so I'm glad it happened. I had stopped alpha lipoic acid and NAC for the past few months since Rich and Cutler both say not to take them if you suspect mercury toxicity. I was taking 1200 mg of ALA and NAC for over a year without any problems even though I had amalgams, but maybe I'll stop again for a bit just to be on the safe side.Lotus, my year long (first real) bout with CFS happened 2 months after an amalgam cracked and fell out. There is no coincidence as far as I'm concerned. This without a doubt was the cause of my CFS. Every time I've increased or decreased my Mercury load I've experienced a heightening of symptoms. I got my final 2 amalgams removed last June and symptoms got very bad. Andy Cutler calls this a "Mercury Dump" where the organs, that no longer have to store mercury that is coming in, will release it to the bloodstream for removal. When chelation happens patients are advised to take a steady dose to keep the levels steady. Once the mercury starts coming out it seems to be like a faucet opening. You got to keep the chelator in the blood to pick it up or your symptoms are going to be awful. I'm wondering if the SMP is also detoxing Mercury as the chelators would.
I've wondered the same thing and Rich has pretty much said it depends on the individual. If you do methylation, just go slow and take binders if you think you need them. I'm only taking 1000 mcg of hydroxocobalamin right now and I just recently stopped methylfolate and folinic acid (I was only taking 100 mcg of each). This is what Rich has said on the subject:Rich says: "For people who suspect high body burdens of toxic metals, tests involving feces, urine and hair are available. High levels of some toxic metals can block enzymes in the methylation cycle and related pathways. Chelation treatment may be necessary to lower the levels enough to permit normal operation of this part of the metabolism."
So is it the chicken and egg? DO I chelate first to remove the Mercury interference of the methylation cycle? If I take supps to overcome the block what is that doing to the Mercury in my body?
The things that I believe helped my adrenal symptoms the most were consistently getting at least 10-11 hours of sleep and limiting activities and sources of stress. Limiting activities for me meant spending most of the day in bed. Since my social interactions were minimal, limiting sources of stress meant I stopped watching TV and movies, following politics, and reading fiction novels. I made a significant recovery during that period. I was also taking a lot of supplements and eating healthy which I'm sure also helped. Many of the supplements I was taking supported mitochondrial function, the Krebs Cycle, and ATP which help with energy and also glutathione production. Methylation will also improve mitochondrial function, ATP, and glutathione production. I was also taking adaptogens which probably helped my adrenals. And also various immune system supplements and antioxidants.I have also been taking B-Right for years. The Paba and Pantethine were very good for Adrenal Fatigue I found out. I see it now has 100mcg of MCbl. Wondering how much of that actually absorbs in the stomach? I see the folic acid is "Quatrefolic (6S)-5-methyltetrahydrofolate". Hmmm.. So whatever MCbl + MTHF mkes it through the stomach would do it. Choline is also a methyl donor from what I've read (http://onibasu.com/archives/am/55325.html) so that may be involved also. I'm not sure if that is a new addition or not.
Lotus, my year long (first real) bout with CFS happened 2 months after an amalgam cracked and fell out. There is no coincidence as far as I'm concerned. This without a doubt was the cause of my CFS. Every time I've increased or decreased my Mercury load I've experienced a heightening of symptoms. I got my final 2 amalgams removed last June and symptoms got very bad. Andy Cutler calls this a "Mercury Dump" where the organs, that no longer have to store mercury that is coming in, will release it to the bloodstream for removal. When chelation happens patients are advised to take a steady dose to keep the levels steady. Once the mercury starts coming out it seems to be like a faucet opening. You got to keep the chelator in the blood to pick it up or your symptoms are going to be awful. I'm wondering if the SMP is also detoxing Mercury as the chelators would.
Rich says: "For people who suspect high body burdens of toxic metals, tests involving feces, urine and hair are available. High levels of some toxic metals can block enzymes in the methylation cycle and related pathways. Chelation treatment may be necessary to lower the levels enough to permit normal operation of this part of the metabolism."
So is it the chicken and egg? DO I chelate first to remove the Mercury interference of the methylation cycle? If I take supps to overcome the block what is that doing to the Mercury in my body?
I have also been taking B-Right for years. The Paba and Pantethine were very good for Adrenal Fatigue I found out. I see it now has 100mcg of MCbl. Wondering how much of that actually absorbs in the stomach? I see the folic acid is "Quatrefolic (6S)-5-methyltetrahydrofolate". Hmmm.. So whatever MCbl + MTHF mkes it through the stomach would do it. Choline is also a methyl donor from what I've read (http://onibasu.com/archives/am/55325.html) so that may be involved also. I'm not sure if that is a new addition or not.
This is just a theory. Since this particular subset of forums is for both methylation and chelation, many people coming here have a metal toxicity of some sort. Since you are the only one other than Rich who has a methylation protocol here, people regard you as an authority on many different health related matters. It's important to note that what you are saying is largely theoretical.Hi Sregan
So is it the chicken and egg? DO I chelate first to remove the Mercury interference of the methylation cycle? If I take supps to overcome the block what is that doing to the Mercury in my body?
For starters, selnium can lock up the mercury in a neutral substance for the rest of one's life. IF mercury is converted to monomethylmercury by MeCbl, it is a process extremely limited by known constaints on the MeCbl. If 10mcg are not excreted unchanged(peer reviewed journal studies) from 1000mcg injected. that leaves 10mcg of MeCbl that can be stripped of the methylgroup by mercury resulting in 1.4 MICROGRAMS of monomethylmercury, as is contained in 1 to 2 grams of the seafood that contains the most monomethylmecury. A 4 ounce serving of such a fish conatanis 112 grams of fish and perhaps 112mcg of monomethylmercury.
As there is uncertainty if MeCbl interacts AT ALL with mercury in the body at in vivo concentrations, it is established that it does interact when at high concentration in vitro.
In a non supplemented population it only takes the mercury destroying 2-4 mcg a day of MeCbl to casue severe deficiency symptoms in the long run. This would describe what appears to be happening. Approximately 80% of mercury symptoms are identical b12 deficiency symptoms
In line with other animals that have been studied, monomethylmercury has a serum half life of approximately 71-72 days.Which means that each year humans get rid of 31/32 of the body load of monomethylmercury. So knowing that and a person's intake the equilibrium level can be easily calculated.
In other words, mercury doesn't interfer at all with normal doses of MeCbl and L-methyfolate whereas the HyCbl has to compete with the mercury for the methyl group needed as one item for the conversion of HyCbl to MeCbl..
Well, that could explain a lot. Assuming what you said is true with me, my first thought is that I have really bad luck that I'd be exposed to mercury (and possibly copper since amalgams have copper too) and then start methylfolate right afterwards. But if that didn't happen I never would have found out about Phoenix Rising or methylation so I'm glad it happened. I had stopped alpha lipoic acid and NAC for the past few months since Rich and Cutler both say not to take them if you suspect mercury toxicity. I was taking 1200 mg of ALA and NAC for over a year without any problems even though I had amalgams, but maybe I'll stop again for a bit just to be on the safe side.
I had been considering taking clay (either calcium bentonite or zeolite), but I wasn't sure if it was necessary. I have a bottle of activated characoal, but I've only used it a few times because I'm concerned it will bind to all my supplements because I take supplements all day long. According to one manufacturer of modified citrus pectin, MCP only binds to the bad stuff, but I'm a bit skeptical.
If you're taking lecithin you're already getting plenty of choline. One tablespoon has around 225 mg of choline. [/quote
I read that choline is a methyl donor. That might explain some of the problems I've had taking Lecithin.
selnium can lock up the mercury in a neutral substance for the rest of one's life.
As I mentioned before people here have encountered toxins being released through methylation and have tests to prove it.