• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Methylation

klutzo

Senior Member
Messages
564
Location
Florida
Jenbooks

Hi,
What you suggested is exactly what I intend to do, unless I find out that the lack of my prescription enzymes is behind all this, and I'd give that about 2 to 1 odds right now. The OTC enzymes are not nearly as strong as the label states. Like most products in the supplement industry, you have no way of knowing what is in there and are playing roulette when you buy them, unless you can afford to pay to have them assayed. It is often not possible to find a particular product you want in pharmaceutical grade, so you pay your dime and take your chances.

There are thousands of folks like me who are in the Medicare donut hole now and are not picking up their prescriptions anymore until the end of the year. I read about it on our home page yesterday. I am lucky I can afford all but this one prescription, which even though it's generic costs almost 6 times what all my other drugs cost combined. I wonder how many deaths will occur because of the donut hole this year.

My blood pressure was up to 158/96 at the doctor's office. Even that is nothing compared to the readings I get once a PSVT attack is underway, which are in the neighborhood of 230/114 with an abnormal pulse of 160. It's been years since my BP med dose was raised. I think I need it raised, and I also need those prescription enzymes.

You made a good point about bugs methylating too, though I am no zoologist, but it makes sense.

If I do start up again, it will be after my gut and blood pressure are stabilized, and with tiny doses. I guess with this program, just because your reaction seems minor, doesn't mean you won't get a delayed one that is a whopper, though I want to say again that I am not blaming this protocol for any of my symptoms until I figure out if the lack of enzymes is the real problem.

klutzo
 

klutzo

Senior Member
Messages
564
Location
Florida
Sara M

Hi Sara,
I want to thank you for the link to the article about Cheney's talk. Some of the things on that list came as a real surprise to me, and I try to keep up with his research.

I am taking large doses of vitamin D3, which he says is bad. CFS and Lyme both cause a shift to TH2 immunity, and vitamin D is known to be bad when the shift is to TH1 (as in sarcodosis), so I am really confused and I wish he had explained why.

I did see one short article about a scary study the other day which said that only vitamin D from sunshine raises immunity, and prevents or drastically reduces the incidence of the degenerative diseases. The article I read said this new study showed that the D3 from supplements did just the opposite, suppressing immunity and causing diseases. I can't get my vit. D outside anymore, because my TH2 shift is so strong that I keep getting stung over and over by fire ants, wasps and bees and having anaphylatic reactions to them, no matter how careful I am. Plus, I have thin, freckly skin and am older, with plenty of sun damage already. Older people have more trouble making vit. D on their skin.

A side note: for those of you who get your vit. D from sun, remember not to shower for at least an hour after you sun yourself, or it won't have time to be absorbed into your body. I hate being hot and sweaty and did it the wrong way for years when I was younger. It came as a real eye opener to learn this!

I was surprised to see D-Ribose on the bad list because it helped me a lot, so much so that I stopped it because it gave me so much energy I felt manic. It was also too expensive.

I was also shocked to see T3 on the bad list. Most of us get much better results with Armour than with Synthroid. I am being switched to just Synthroid a week from now and am praying I will not turn out to be a non-converter. Pharmacies around here are finding it impossible to get natural thyroid with T3 and rumor is it's being discontinued, which would leave some folks in dire straits, as they'll be forced to take Cytomel, which is much more dangerous than natural T3 and must be carefully monitored. This esp. surprised me, since so many Fibro specialists out there are adamant that pushing maximum doses of T3 is the best way to clear up fibromyalgia.

Fructose is on the bad list. I hope he means when used as a sweetener in processed foods. I hope whole, raw fruits are still OK, because I am not giving them up.

He put diet on the good list, but failed to say what kind of diet. A low carb diet is pushed for Lymies, but many of us with Lyme have a mild form of acquired acute intermittent porphyria, and a low carb diet makes us deathly ill.

I was not surprised to see magnesium on the good things list. If I could only have one supplement, Mg would be the one. Borrelia steals about 2/3 of the Mg you take in, so a lot of extra is needed.

I also agree about Klonopin. In running a support group for ten years and a call in line for four years after that, I found Klonopin to be people's number one choice for most helpful drug by a mile.

klutzo
 

jenbooks

Guest
Messages
1,270
The shower information about Vitamin D is urban legend. However I do wonder about people taking such massive supplements. You evolved to be in the sun.
Cheney's ideas about supplements are not necessarily correct, and even so might be correct only in a subset of people.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi,
What you suggested is exactly what I intend to do, unless I find out that the lack of my prescription enzymes is behind all this, and I'd give that about 2 to 1 odds right now. The OTC enzymes are not nearly as strong as the label states. Like most products in the supplement industry, you have no way of knowing what is in there and are playing roulette when you buy them, unless you can afford to pay to have them assayed. It is often not possible to find a particular product you want in pharmaceutical grade, so you pay your dime and take your chances.

There are thousands of folks like me who are in the Medicare donut hole now and are not picking up their prescriptions anymore until the end of the year. I read about it on our home page yesterday. I am lucky I can afford all but this one prescription, which even though it's generic costs almost 6 times what all my other drugs cost combined. I wonder how many deaths will occur because of the donut hole this year.

My blood pressure was up to 158/96 at the doctor's office. Even that is nothing compared to the readings I get once a PSVT attack is underway, which are in the neighborhood of 230/114 with an abnormal pulse of 160. It's been years since my BP med dose was raised. I think I need it raised, and I also need those prescription enzymes.

You made a good point about bugs methylating too, though I am no zoologist, but it makes sense.

If I do start up again, it will be after my gut and blood pressure are stabilized, and with tiny doses. I guess with this program, just because your reaction seems minor, doesn't mean you won't get a delayed one that is a whopper, though I want to say again that I am not blaming this protocol for any of my symptoms until I figure out if the lack of enzymes is the real problem.

klutzo


Hi Klutzo,

Like most products in the supplement industry, you have no way of knowing what is in there and are playing roulette when you buy them, unless you can afford to pay to have them assayed. It is often not possible to find a particular product you want in pharmaceutical grade, so you pay your dime and take your chances.

I had quite a shock to find I couldn't get the same results with a different brand of b12 when the first became sold out and backordered. That is when I and some other hypersensitives ordered bottles of many brands of mb12 and started systematically testing them for effectiveness. We found several brands that where incredibly more effective than others, one brand that had zero effect and 7 others that had a little to some effect. When I started I had no idea that the differences between brands would be so easily discernable.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
The shower information about Vitamin D is urban legend. However I do wonder about people taking such massive supplements. You evolved to be in the sun.
Cheney's ideas about supplements are not necessarily correct, and even so might be correct only in a subset of people.


Hi Jenbooks,

I do find time in the sun, about an hour total on all sides of whole body sun exposure, to be noticably more effective than even 5000 IU of D3. Right now the rage amongst docs is testing all their patients for D and upping their supplement levels.
 

jenbooks

Guest
Messages
1,270
It would be nice if we were in an age where we could have all our polymorphisms tested. Then you'd know what your VDR receptors were doing and whether to avoid risk of certain diseases you *must* live at a latitude and in an area where you get useful sun (UV) all year round. You might avoid lyme, m.s., cancer etc--IF you were a person who had VDR receptors that weren't as efficient as others...

*IF* you knew from birth whether you were a person who could make enough glutathione to detox heavy metals, or not, then you'd know whether you should get amalgam fillings or be careful about fish like tuna etc---adjust your diet accordingly.

If you knew, Freddd, about your B12 conversion issues you could have had a very different life.

Our polymorphisms have dramatic effects on our health. They are a shuffling of genes from people from very different parts of the world. When emigration and global travel and the melting pot were not the case, genes usually adapted to a stable environment over time and the more efficient ones thrived. They adapted to the local environment, its toxins, its richness, and the local foods. So what do we do if mom came from here and dad came from there (wherever here and there are) and we get a shuffle of genes that in some cases may render us doubly vulnerable to something environment, in others very unfit for the environment we're in etc.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
B12 and Saturated Equilibrium

I've used a term in reference to mb12 and adb12 that folks have asked me about. I'm going to try to explain it here.

First let's start with equilibrium. Essentially it is a state of balance. With b12, at any dose we sustain for a while we come into a state of equilibrium. Our serum level indicates that equilibrium level within a daily variation range. On the whole our outgoing b12 equals exactly our incoming and the serum level stays where it is within a narrow range of fluctuations. When we raise our incoming dose, it takes a number of days to weeks for all the nooks and crannies of our body to be occupied with b12 and to come into a new equilibrium and our serum level goes up until the amount excreted equals the amount taken in.

Consider the characteristics of morphine. The more that is taken, the more pain it releives. There is a dose proportionate effect. There is no known ceiling to that effect. It progresses in a way similar to our senses. An increase of 1/3 of a doubling of the dose has a just noticable effect. So when a person is titrating their daily dose is increased by 33-50% typically at each increase. At 90mg a day that might be an increase by 30-45mg to 120-145mg/day. At 300mg per day, the increase might be by 90-150mgs. At 1000mg/day the increase might be by 300-500mg/day. A person on a high dose gets much less effect from each additional mg.

Now let's consider mb12. It has dose proportionality as established in studies, like morphine but it drops off much faster. It also has a ceiling on effect.

The first 10mcg of mb12 are the most effective. These can saturate the transport system. Taking a 5 star 1000mcg sublingual puts about 150mcg into serum. This has a noticably larger effectiveness than 10mcg, but probably not 15x. Going up to a 5 star 5000mcg sl gives about 750mcg into serum. If a person has stabilzed on 1000mcg and reached an equilibrium there, this will produce a noticable difference, but not a huge one. Going from 5mg to 10mg after equilibrium is reached might produce a noticable difference. Going from 10mg to 20mg after equilibrium might produce a just noticable difference. Beyond that an increase in dose does not usually produce a noticable difference until 40-50mg is reached and there is a sudden, different, disproportionate threshold effect as something different happens, for some people. This is equivalent to about 7.5mg injected mb12. From there to 25mg injected there is no noticable change. For most people, it appears that the body has the most it can utilize at a sublingual dose of 5-20mg. For some people there is a further reaction at about 7.5mg injected mb12 which Japanese research has characterised as "an upregulation of neural healing". Since I have found such an effect for each adb12 and mb12 separately and coupled with the research detected lower CSF cobalamin levels in folks with CSF/FMS and Alzheimer's and likely some others as well and as increased levels are effective in diabetic neuropathies as well, that would seem to be the dosage level at which the cobalamins penetrate the CSF by diffusion and have their respective effects. The research that notes the "dose proportionate healing response" of mb12 also points out that hydroxyb12 and cyanob12 do NOT exhibit dose proportionality in healing nor do they promote upregulation of neural healing.

To sum it up, most people reach a level of maximum healing of the body at between 5mg and 20mg daily in a sublingual dose of mb12, or 1000-5000mcg daily injected SC mb12. At this level more does not appear to make any noticable difference until the threshold level is reached, if applicable for that person, and then again a ceiling is reached and further increases appear to make no difference.

Because of apparant differences in phramacokinetics of adb12 most people appear to reach an equilibrium in the body at 3000mcg/day though some note change as high as 24mcg/day. There is also a threshold effect noted by some at 39-51mg sl.

The notable threshold effects disappear over a period of days to weeks as equilibrium is reached at that level and no further increase is noted.

Basically, when you can't feel the dose in any way, no further increase in saturation is occurring and equilibrium has been reached at that dose.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
It would be nice if we were in an age where we could have all our polymorphisms tested. Then you'd know what your VDR receptors were doing and whether to avoid risk of certain diseases you *must* live at a latitude and in an area where you get useful sun (UV) all year round. You might avoid lyme, m.s., cancer etc--IF you were a person who had VDR receptors that weren't as efficient as others...

*IF* you knew from birth whether you were a person who could make enough glutathione to detox heavy metals, or not, then you'd know whether you should get amalgam fillings or be careful about fish like tuna etc---adjust your diet accordingly.

If you knew, Freddd, about your B12 conversion issues you could have had a very different life.

Our polymorphisms have dramatic effects on our health. They are a shuffling of genes from people from very different parts of the world. When emigration and global travel and the melting pot were not the case, genes usually adapted to a stable environment over time and the more efficient ones thrived. They adapted to the local environment, its toxins, its richness, and the local foods. So what do we do if mom came from here and dad came from there (wherever here and there are) and we get a shuffle of genes that in some cases may render us doubly vulnerable to something environment, in others very unfit for the environment we're in etc.

Hi Jenbooks,

If you knew, Freddd, about your B12 conversion issues you could have had a very different life.

At this present time that is true. My children can have a different life and mine from here on out can be different. However, there was no possibility in this version of the world in which the Nobel prize was awarded for a laboratory mistake for my younger life to be different. Mb12 wasn't available in the USA until 1998 and dibencozide at a similar time. Metafolin became available about 5 years ago or so. Of course if the problem had been identified I would have done nothing as foolish as becoming a vegetarian and would have tried to develop a liking for liver in some form, and not counted on cyanob12 as all the doctors assured me was just fine.

It was always a fight with my mother who wanted to restrict my meat to far less than my body was screaming for. She didn't do that to my sisters, only me for some reason known only to her. She also displays a pattern of b12 deficiency for much of her life. I'm not related to her geneticly.


Many of these polymorphisms only become apparant when we try to substitute a synthetic that "ought" to be just the same but isn't for some unknowable proportion of people. Quite possibly many of the "new" diseases that have exploded that are not microorganism caused are casued, as you suggest, by genetic requirements for something not found in the modern food environment.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi, freddd.

You wrote:

"Maybe it's the presence of b-complex, methylfolate and b12 all together and it normalizes prodction of CoQ10 by the body? B12 deficiencies affecgt more than 600 biochemical chains, maybe this is one of them."

You're right about this. Methylation is required in the synthesis of Co Q10. The nutrients you mentioned support the methylation cycle.

Other substances that require methylation for their synthesis are carnitine, choline, and creatine.

Sorry I haven't been very communicative lately. I'm pretty swamped. Sounds as though you're doing some good things.

Rich

Hi Rich,

Welcome back. I would be most interested if you would look at the mercury methylation by mb12 and bile excretion of methylmercury model. I posted the results of a preliminary version and wonder what I missed or misunderstood and any suggestions for improvment and/or corrections. It's an Excel spreadsheet I could email if you would like to play with it.
 

klutzo

Senior Member
Messages
564
Location
Florida
NO/ONOO and methylation

I was reading over a summary of methylation and Dr. Pall's NO/ONOO theory this morning at ProHealth when something jumped off the page at me.

Dr. Pall says the NO/ONOO problem is what blocks the methylation pathway and is the underlying cause of CFS and FMS. He agrees with the methylation treatment protocol as a way to help fix this. No doubt they ran the article because it supports their product which has all four types of B12 in it. (Please don't ask me to explain NO/ONOO if you've not heard of it.....look up Dr. Martin Pall....my Lyme brain could not even begin to do it justice).

Dr. Pall talks about the (nitrate or nitrogen?) problem and how it results in low methionine, and I suddenly remembered a conversation on my very first visit to my cardiologist when I first started having heart problems with this illness, back in 1988.

The doctor looked at my lab results, told me I was too high in nitrate or nitrogen (I've already forgotten what the "N" stands for in NO/ONOO.... see how bad my brain is?) and said that no doubt I must be deficient in methionine! If only we had known what to do about it back then, when I was in early stage II and could have recovered completely.

I had no idea what he was talking about at the time, and he did not say anything more or prescribe any treatment, and now here we are 21 more years of suffering later. I have never had anyone automatically test my nitrate or nitrogen (which is it, anyone remember?) since then, including the same cardiologist, but I've put it on my list to ask him about when I see him next.

This is SO frustrating. Sometimes I wish m long term memory were as bad as my short-term is, so I would not remember so many of these golden opportunities that were lost for my health to be regained.

klutzo
 

klutzo

Senior Member
Messages
564
Location
Florida
Supplement labels vs. what is really inside

Freddd,
I am glad you and your friends could afford to assay those B12 brands. All of us are benefiting from it.

I saw an article about random testing done by some organization that went to stores and grabbed brands off shelves to test at random. The results were shocking.

Most brands did not have what was on the label inside. Contents were either less than stated, or none at all of what was stated, and/or there were substitutes, binders, fillers, etc. galore. The ones most likely to have none of the stated content were herbals like echinacea.

The biggest shocker for me was that all of the few brands that contained exactly what was stated on the label were the ones most of us regard as cheap and made with lousy ingredients. Examples of 100% accuracy on the label are Centrum Silver and One-a-Day.

Some of the priciest ones were the worst offenders. My OTC enzymes are a recent example for me, since the label says they are four times stronger than my prescription enzymes, yet they do not work well at all.

I also am sure that my expensive and very highly rated Multivitamin (recently given an award as the best on the market) is not totally accurate. The label says it has enough Magnesium that I should have been able to drop down one dose on my extra Mg. It quickly became obvious that I could not change the dose without constipation. I tried it twice and could only conclude that the label is lying about the Mg content. I wonder what else is not in there that I am paying for?

Maybe those people who say we should use our supplement money to buy organic food are correct, with some exceptions that you just can't get from food or get safely anymore. The problem is that I am supposed to eat over 4 pounds of greens alone each day to get my daily requirements of the nutrients that come from greens (per Dr. Mercola). I cannot do that.

And the organic name is being besmirched these days too as the definition is loosened. "Free range" is often a lie and so is "wild salmon". I've seen articles on this scam as well.

I guess we'd all need to go back to growing our own. Not all could do this. Our land is very sandy and previous attempts at veggie gardens have been busts, due to high fertilizer cost and bugs galore.

I would love to see content standardizing regulations, but without turning the supp. industry over to Big Pharma by prescription only at outrageous markups. Unfortunately, every bill I know of that has ever been put forth to regulate what is in supplements has been tied to giving those a**holes at Big Pharma control.

klutzo

klutzo
 
Messages
24
Hi FREDD, a little help

HI Fredd and a little help please (from anyone else too!)

I just started the protocol. In nutshell have lyme/cfids/fibro/complex regional pain syndrone,/ nerve damage/ migraines/infections. As a kid had lots of colds and flu and strep, always had to sleep more than others to "regenerate" but was active kid. At 18 had small case of what was CFS probably, but mostly recoverd but not totally. About 10 years later came down with full blown cfids etc, both sort of gradual (dragging about two years) and then following a winter virus pretty sudden onset, also with some previous physical truama in there (bike accident, hit by car)

After about 4 years on the MP protocol my immune system has improved, both innate and ,finally, adaptive (for the frequent flu), infections and inflammations down, pain down, and after about 20+ years of not being able to sleep without tamazepam, i sleep great. But oddly enough what hasnt improved is energy, stamina, post exertion fatigue, etc. I still have confines of the energy bubble, and am looking for ways to improve faster (i no longer see improvement in months, but yearly). I cannot exercise at all (or even do normal exertion), or lose my daily functioning, also almost immediately lose brain power (cognition). Also still have almost constant sinus infection. Still some muscle spasms which also limit functioning along with energy bubble.

I goofed and forgot to start with partial lozenges, so anyway at less than week am at 2 methyl b12 in morning and adeno in afternoon. I think i am noticing a little more stamina, mental and physical. My concern and reason for posting is that it is somehow affecting my sleep pattern. (My previous sleep disorder was inability to fall asleep, pretty much once i got asleep i would stay asleepl. As you all may know some cant fall asleep, some cant stay asleelp, and some have both. I'm in the first group, or was, pre-MP) But now i notice i still get tired and nice and sleepy in the evening and fall asleep (no medication), but after 4 pr 5 hours i wake up and cant get back to sleep.

This worries me because the two years before i got sick (the "dragging" years) i was starting to have sleep problems and believe if i had gotten treatment for sleep disorder, which they werent doing way back then, i wouldnt have gotten so severely ill. Also, having just recovered normal sleep patterns and deep sleep, dont know if i am willing to give it up, or if is prudent to do so.

So wonder if you have seen this before, and if there are adjustments i can make (short of going back on temazepam), or what is going on . . . ???? And what you can suggest.

Thanks. Dont pretend to understand much, am just starting to read and learn . . . but jumped in . . .!!!!!! Thanks again for your interesting research and time . . .
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I was reading over a summary of methylation and Dr. Pall's NO/ONOO theory this morning at ProHealth when something jumped off the page at me.

Dr. Pall says the NO/ONOO problem is what blocks the methylation pathway and is the underlying cause of CFS and FMS. He agrees with the methylation treatment protocol as a way to help fix this. No doubt they ran the article because it supports their product which has all four types of B12 in it. (Please don't ask me to explain NO/ONOO if you've not heard of it.....look up Dr. Martin Pall....my Lyme brain could not even begin to do it justice).

Dr. Pall talks about the (nitrate or nitrogen?) problem and how it results in low methionine, and I suddenly remembered a conversation on my very first visit to my cardiologist when I first started having heart problems with this illness, back in 1988.

The doctor looked at my lab results, told me I was too high in nitrate or nitrogen (I've already forgotten what the "N" stands for in NO/ONOO.... see how bad my brain is?) and said that no doubt I must be deficient in methionine! If only we had known what to do about it back then, when I was in early stage II and could have recovered completely.

I had no idea what he was talking about at the time, and he did not say anything more or prescribe any treatment, and now here we are 21 more years of suffering later. I have never had anyone automatically test my nitrate or nitrogen (which is it, anyone remember?) since then, including the same cardiologist, but I've put it on my list to ask him about when I see him next.

This is SO frustrating. Sometimes I wish m long term memory were as bad as my short-term is, so I would not remember so many of these golden opportunities that were lost for my health to be regained.

klutzo

Hi Klutzo,

Yes, amazing how we see various choice points looking back with superior knowledge.

In the cycle of recycling homocysteine back to methionine you have methylb12, which does generate a limited amount of SAM-e, methylfolate and of course an intermediate step SAM-e (s-adenosyl-methionine). All of these things suggested, mb12, methylfolate and SAM-e are part of that cycle generating methionine. N in NO is nitrogen and O is oxygen and together make nitric oxide.

MB12 and SAM-e and methylfolate all work to reduce homocycteine and change in back into methionine reducing the danger of heart damage and strokes. P-5-P is also invloved in that.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
HI Fredd and a little help please (from anyone else too!)

I just started the protocol. In nutshell have lyme/cfids/fibro/complex regional pain syndrone,/ nerve damage/ migraines/infections. As a kid had lots of colds and flu and strep, always had to sleep more than others to "regenerate" but was active kid. At 18 had small case of what was CFS probably, but mostly recoverd but not totally. About 10 years later came down with full blown cfids etc, both sort of gradual (dragging about two years) and then following a winter virus pretty sudden onset, also with some previous physical truama in there (bike accident, hit by car)

After about 4 years on the MP protocol my immune system has improved, both innate and ,finally, adaptive (for the frequent flu), infections and inflammations down, pain down, and after about 20+ years of not being able to sleep without tamazepam, i sleep great. But oddly enough what hasnt improved is energy, stamina, post exertion fatigue, etc. I still have confines of the energy bubble, and am looking for ways to improve faster (i no longer see improvement in months, but yearly). I cannot exercise at all (or even do normal exertion), or lose my daily functioning, also almost immediately lose brain power (cognition). Also still have almost constant sinus infection. Still some muscle spasms which also limit functioning along with energy bubble.

I goofed and forgot to start with partial lozenges, so anyway at less than week am at 2 methyl b12 in morning and adeno in afternoon. I think i am noticing a little more stamina, mental and physical. My concern and reason for posting is that it is somehow affecting my sleep pattern. (My previous sleep disorder was inability to fall asleep, pretty much once i got asleep i would stay asleepl. As you all may know some cant fall asleep, some cant stay asleelp, and some have both. I'm in the first group, or was, pre-MP) But now i notice i still get tired and nice and sleepy in the evening and fall asleep (no medication), but after 4 pr 5 hours i wake up and cant get back to sleep.

This worries me because the two years before i got sick (the "dragging" years) i was starting to have sleep problems and believe if i had gotten treatment for sleep disorder, which they werent doing way back then, i wouldnt have gotten so severely ill. Also, having just recovered normal sleep patterns and deep sleep, dont know if i am willing to give it up, or if is prudent to do so.

So wonder if you have seen this before, and if there are adjustments i can make (short of going back on temazepam), or what is going on . . . ???? And what you can suggest.

Thanks. Dont pretend to understand much, am just starting to read and learn . . . but jumped in . . .!!!!!! Thanks again for your interesting research and time . . .


Hi Beckster,

Any one or several of a dozen or so cofactors could help you go the rest of the way to normal energy. A good place to start is b-complex, a&d, zinc, 8 factor E, C, Zinc, magensium, calcium, potassium. After these are going then l-carnitine fumarate, SAM-e and maybe some other things after taking in to account how things are working.

Nothing at all wrong with jumpoing right in with full tablets. Plenty of people find that a perfectly good thing to do. Some just have too much reaction to be comfortable and have to take a slower approach. Normally, over a bit of time these things normalize sleep patterns. Also the question is are you being refreshed by the sleep. That is more important than absolute amount. You might try getting all the b12 in you by 10-11 am. That might make a difference.
 

klutzo

Senior Member
Messages
564
Location
Florida
To Freddd - 2 questions and 1 comment

Hi Freddd,
Thanks for your repply about the NO/ONOO problem. I have either missed something, or these are legit questions, and I'd like your take on them....

1) If my methionine must be low, as my cardiologist said it probably was, how come my homocysteine is also quite low?

2) I also asked this before but you missed it in all the posts you are somehow managing to juggle, proving as you do it how much better your brain is working! Rich VanK in his post to you listed Creatine as another substance that requires good methylation. I have taken it for quite awhile before each workout, and for one example, the very first time I took it, I was able to increase my bicep curls from 8 to 60, with no PEM at all! I'd been stuck at 8 curls for over a decade by that point, yet one 2.5 gram dose of creatine dramatically changed all that. How could I have gotten those results if I have a methylation block?

My comment is that I have the same problem as Beckster with sleep on this program. I wake up after 5 hrs. and can't get back to sleep. I have made sure I am done taking the supps. by 2 PM, but maybe it needs to be even earlier once I get my gut fixed and start up again. Won't be easy, since I normally don't get up until 9:30 am. (registered night owl here).

Thanks,
klutzo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd,
Thanks for your repply about the NO/ONOO problem. I have either missed something, or these are legit questions, and I'd like your take on them....

1) If my methionine must be low, as my cardiologist said it probably was, how come my homocysteine is also quite low?

2) I also asked this before but you missed it in all the posts you are somehow managing to juggle, proving as you do it how much better your brain is working! Rich VanK in his post to you listed Creatine as another substance that requires good methylation. I have taken it for quite awhile before each workout, and for one example, the very first time I took it, I was able to increase my bicep curls from 8 to 60, with no PEM at all! I'd been stuck at 8 curls for over a decade by that point, yet one 2.5 gram dose of creatine dramatically changed all that. How could I have gotten those results if I have a methylation block?

My comment is that I have the same problem as Beckster with sleep on this program. I wake up after 5 hrs. and can't get back to sleep. I have made sure I am done taking the supps. by 2 PM, but maybe it needs to be even earlier once I get my gut fixed and start up again. Won't be easy, since I normally don't get up until 9:30 am. (registered night owl here).

Thanks,
klutzo

Hi Klutzo,

1) If my methionine must be low, as my cardiologist said it probably was, how come my homocysteine is also quite low?

Methionine is an essential amino acid. That means it must be consumed. While we recycle some some of it we can't synthecize it so we have to eat it. Perhaps you have digestive or absorbtion problems that hinder it's proper extraction from protein. Lack of pancreatic enzymes maybe have an influence on that. If you don't have it in you it isn't going to become homocysteine either.

2) I also asked this before but you missed it in all the posts you are somehow managing to juggle, proving as you do it how much better your brain is working! Rich VanK in his post to you listed Creatine as another substance that requires good methylation. I have taken it for quite awhile before each workout, and for one example, the very first time I took it, I was able to increase my bicep curls from 8 to 60, with no PEM at all! I'd been stuck at 8 curls for over a decade by that point, yet one 2.5 gram dose of creatine dramatically changed all that. How could I have gotten those results if I have a methylation block?

The formation of creatine requires good methylation. Taking it bypasses that step. Cholin is in lecithin and many b-complexes including b-right. Cholin is TMG with one more methyl group. Taking carnitine in one form or another bypasses the synthecization step also.

I have fluctuated as to whether to include creatine in the critical cofactor list. It doesn't seem to help very many people AFTER methylb12, methylfolate, SAM-e, adb12, l-carnitine fumarate etc are all being taken. Order is important.
 

klutzo

Senior Member
Messages
564
Location
Florida
Digestion

Hi Freddd,
Good point about my lack of enzymes. I have "severe, exocrine pancreatic insufficiency". Also, Lyme Disease reduces digestion by 20,000%, which is why all the LLMDs I know of prescribe enzymes to their Lyme patients, not just the ones like me who kept getting tiny gallstones stuck in their ducts so their enzymes couldn't get out and ending up digesting their pancreas instead.

Creatine was like a miracle for me, but I immediately wondered why my body wasn't making enough of it on it's own. It does help aging muscles to stay strong, but there are risks of weight gain, and of higher blood pressure with large doses. I never went above 5 grams, 3 days per week. I agree it's better to root out the cause of why it's low and fix that.

klutzo
 
Messages
66
short term memory

Hi Freddd,

Is it normal, in what you know about peoples experience, to have worsenibg of focus and short term memory during startup? I'm having a general worsening it seems and am not sure how long to stay the course.

Have to point out that this was occuring prior to supplementation, that is, a downward trend in short term memory, it seems quite a bit worse these days

Thank you,
Velha
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I had an interesting few days of start-up, mainly palpitations, feeling anxious, buzzing nerves on 2mg methyl B12. I backed off for one day, then restarted on 1mg for one day, then went back up to 2mg, and am now on 3mg without any problems (so far).

This thread is very useful. I noticed today that my blood pressure had gone up to 133 / 83, and imagine it is due to the CO10 I take 3 times a day. I will stop this now and see if this normalises...

The main improvement is in my POTS, which has been debilitating. After a few days of start-up heart symptoms - palpitations, missed beats, heavy beat - this has now stopped and the tachycardia when I stand is diminishing.

Thanks for your post. These are the same kinds of things I've experienced. A lot of heart symptoms, along with shortness of breath, air hunger and excessive yawning. That's in addition to the annoying hyperactive and anxious feelings. And also I've had a hard time sleeping, and have woken up feeling broiling hot a few times.

I was taking ONLY the adB12, not the methyl. On my first few days of it, I felt noticeable improvement in both my energy and my mental clarity, especially on day #3. And then about a week into it, I began to get tired and very ravenously hungry for about 3 days, and then after that all the discomfort set in--this was after I increased my dose from 1 to 2 lozenges.

I know some of my symptoms (particularly the overheating at night) are probably due to changing hormones, as I am very peri-menopausal. But some are also due to intense heavy metal detoxification, which I think the adB12 has triggered. I just saw one of my practitioners this week. He does does biophoton testing, and confirmed this for me.

I have stopped the B12 completely for now. I was SO TOXIC yesterday, that I stopped just about all my supplements, except magnesium (for heart symptoms), high doses of chlorophyll and the N-A-C, 1 gram/3 X--to help me detoxify. I feel MUCH BETTER today--almost ALL my symptoms are improved, especially
the shortness of breath, which was so awful yesterday that I had to spend all day on the couch.

I am not sure how to proceed from here. I'm hoping Freddd will have some input on this.
 

jenbooks

Guest
Messages
1,270
Simplified Protocol

Dreambirdie, you were not on PH when folks started trying the Simplified Protocol of Rich's and some had some serious reactions. It was a bit stunning to think, just some vitamins could do this? But correcting decades of incorrect methylation, with toxic metals and various chronic infections on board, can release a floodtide.

We are a different population, very sensitive. And so when people stopped and then started they would sometimes do extremely tiny doses. I read of one person doing 1/256th of Folapro.

I know of other people who are hypersensitive. A practitioner who treated an autistic child who was extremely reactive to various things including milk so that if someone in his family drank milk and later kissed him on the cheek it would cause a red wheal in the form of lips, was started on probiotics by taking a smidge and puttting it in a glass of water so he could tolerate the probiotic.

I think the reactions of those on this board confirm I'm going to start with microdoses. I'll crush it with mortar and pestle and just take a dusting on a fingertip.