Poss to have an idiot's guide to methylation block theory?

[Freddd]

Thanks Fredd for your detailed reply. Is it possible to have the list of supplements in your protocol so I am clear what the different supplements are between yours and Rich's protocol. Your and Rich's help has been very appreciated. Thank you.

Fredd, when you write 'I appear to have restricted, not absent, conversion of one type of cobalamin to another' and Rich has commented that you have shared you have an inborn genetic error of metabolism in your intracelluar B12 processing enyzymes, am I right in understanding you have deduced this not through tests, but through your own self treatment trials? Thanks.

Hi Anniekim,

Fredd, when you write 'I appear to have restricted, not absent, conversion of one type of cobalamin to another' and Rich has commented that you have shared you have an inborn genetic error of metabolism in your intracelluar B12 processing enyzymes, am I right in understanding you have deduced this not through tests, but through your own self treatment trials?

Yes. This deduction, or maybe induction, was arrived at via a detailed lifetime history and various changes in practice along the way. Most babies who have a severe and complete lack of such processing die young or have severe "failure to thrive" and other such problems. The testing just isn't done on adults so the discovery of adults with this disorder is "rare". I didn't have a severe reaction until I entirely removed meat from my diet by becoming vegetarian. Even though not vegan the little I got from eggs, dairy and occasional fish didn't make much difference. I had separate responses to body-mb12, body-adb12, high dose CNS-mb12 and high dose CNS-adb12, but then so do many people here. It is that separate CNS response adb12 and/or mb12 that appears to differentiate FMS, CFS, Parkinson's, Alzheimer's?, ALS and MS.

 

[Freddd]

I have watched a lot stall out

Freddd, do you think "over-doing it" has anything to do with the stall some experience? I'm quite badly debilitated in terms of what I can do mentally and get really tired, (crazy?), of sitting in a dark room with my eyes closed all night, so as soon as I start to feel a bit better, I do more. I usually end up crashing and then whatever helped, doesn't anymore. I'm hoing to avoid this with the B12/methyfolate.

Hi Rockt,

Picture a compound interest curve where the curve goes up faster and faster as it progresses. Exercise capacity seems to follow that. So at first, only very small increases can be made or "overdoing" happens and a person crashes. Learning what I could do without crashing was one of the more difficult steps. There was a stall with each crash. But it was a different stall experience from paradoxical folate deficiency. The stall with potassium, D, zinc magnesium, misc b-components are each different but with overlapping symptoms.

 

[Freddd]

Hi, Anniekim.

Glutathione peroxidase (GSH Px) is an enzyme (actually a group of enzymes) that use glutathione to quench hydrogen peroxide and lipid peroxides, which form as a result of oxidative stress. Oxidative stress is a particular problems in ME/CFS, and has been the subject of quite a few published papers. In my hypothesis, it results from the depletion of glutathione in most cases. However, if there is a problem with the glutathione peroxidase enzymes, this can also allow oxidative stress to rise. Such a problem can be due to an inherited genetic polymorphism in the enzyme, or to a deficiency of selenium, which the main glutathione peroxidase enzymes require as a cofactor. I note that you are in the UK. It has been published that the population in the UK in general has been low in selenium since the 1970s, when the European Union was formed, and the UK began buying its grain from Europe, rather than from Canada and the U.S. The soils in Europe are low in selenium, so the UK population went low in selenium in general. Note that the Coxsackie viruses thrive under conditions of low selenium (as in Keshan disease in China, in an area where selenium is very low in the soil), and most of the published papers on Coxsackie in ME/CFS have come from the UK, though more recently, Dr. John Chia in southern California has been finding enteroviruses in general, and Coxsackie viruses are enteroviruses. Supplementation with selenium can correct this problem, if present.

I have found that most PWMEs/PWCs are low in glutathione, but there is a subset that has normal glutathione levels, and though my data are limited, it looks as though these people have problems with the glutathione peroxidases or the glutathione transferases, or both. The latter are the enzymes that make use of glutathione to bind toxins for excretion.

Best regards,

Rich

Glutathione peroxidase (GSH Px) is an enzyme (actually a group of enzymes) that use glutathione to quench hydrogen peroxide and lipid peroxides, which form as a result of oxidative stress

One of the characteristics of b12 deficiency is prematurely gray hair thought to be caused by the hydrogen peroxide excess. Is this where that would occur?

 

[Freddd]

Rich, sorry another question, hope that's ok. In the thread 'The Three P's - A Closer Look at the middle One', you wrote, 'that the women who are treated in the study that Dr Neil Nathan and I carried out had already been treated for a variety of other issues for starting the methylation treatments'. Elsewhere you have written two thirds responded to your protocol. In light of this, I would like to clarify are you saying that the two thirds who responded in your study had done other treatments such as treating heavy metals, treating lyme, mold avoidance and anti-virals before having success on your protocol?

Hi Anniekim,

With the mb12/Metafolin/adb12 protocol things appear to work and healing progresses despite the metals, molds etc and the immune system is strengthened and deals with it. Some researchers comment that mb12 appears to be the universal neurological detoxification agent when present in sufficient quantity. It also appears protective against the toxins generating cascading neuron death.

 

[Freddd]

There are multiple factors as to who is restored to health and how thoroughly. Once CNS damage starts it is difficult to stop much less restore. Once body damage becomes cascading, damage causing secondary damage recovery is induced. This doesn't mean a person can't largely recover but that it will not be complete. Impairments may be retained even after a person is able to lead a normal life again. People up from wheelchairs can walk without falling over but their balance may never fully return. Numb feet may never have fully normal feeling again. The muscles in the feet atrophy and may never be restored.

For instance, once the large muscles start atrophying (releasing their "stored" b12 for other use) the slide down increases in speed and recovery becomes far more difficult and prolonged. Being sick with CFS for 20 years of severely limited activity causes severe debilitation and requires prolonged rehabilitation. The symptoms that can be relieved by the nutrients are, but functionality is not returned without much effort and repair of secondary damages.

So many of the symptoms I used to have years ago are long gone and have never been back after the first year or two, despite numerous setbacks. That was followed by 3 years of physical rehabilitation during which CNS deterioration continued. The past 3 years has been focused on first stopping then reversing the CNS deterioration and that has been difficult with all sorts of at the time unknown reasons for setbacks until they become obvious like glutathione and paradoxical folate deficiency. There may still be other unknowns. I have other problems from physical injuries through the years that are still present. This is definitely my bonus life but it isn't perfect. I can do 4 hours of pick and shovel work. I can hike and swim but wouldn't count on skiing. I'm trying to find some consulting work. That hasn't been easy at 63 in the midst of this recession. I'll never be the same person I was in terms of personality/mood and may not end up with what I am right now when all the changes are said and done.

Recovery to the point of being able to work and live a normal life does not mean 100% the same as before. Those with purely functional problems without significant damage are the ones most likely to more or less fully recover in a limited time without extended rehabilitation. Good luck.

 

[toddm1960]

Hi Anniekim,

With the mb12/Metafolin/adb12 protocol things appear to work and healing progresses despite the metals, molds etc and the immune system is strengthened and deals with it. Some researchers comment that mb12 appears to be the universal neurological detoxification agent when present in sufficient quantity. It also appears protective against the toxins generating cascading neuron death.

Fred is this your protocol, mb12/Metafolin/adb12?

 

[richvank]

Glutathione peroxidase (GSH Px) is an enzyme (actually a group of enzymes) that use glutathione to quench hydrogen peroxide and lipid peroxides, which form as a result of oxidative stress

One of the characteristics of b12 deficiency is prematurely gray hair thought to be caused by the hydrogen peroxide excess. Is this where that would occur?

Hi, Freddd.

That's interesting! I don't know, but maybe so.

Rich

 

[Freddd]

Fred is this your protocol, mb12/Metafolin/adb12?

Hi Toddm,

Those 3 items are key items in it but by no means constitute the protocol. It is far more complete, and complicated. There are many other items that can make huge differences. The active b12 protocol has been worked over and exists in many forms and variations. Inherent in it is the need to mold it to the person, the "fine tuning". And things change. Six years ago it included folic acid and suggested that methylfolate might be more effective when available. Four years ago the reports started coming in that "Metafolin turned on the mb12" and other such. Three weeks ago I was able to identify paradoxical folate deficiency caused by folic and/or folinic acid in myself and many others. This week the discussion is about effects of biotin now that many of us have lost that in switching from B-Right. Things evolve. Everybody experimenting and reporting their experiences is helping shape it. It is very much a cooperative process.

 

[minkeygirl]

Really dumbed down methylation please

If this is simple then boy my brain is really a mess. This is way to much info for me. I appreciate the knowledge here but I cannot read large paragraphs and I totally check out with the technical jargon. I think I might need this but cannot wade through the information to decide. I know I need B12 and glutathione? I took liquid glutathion after DMPS chelation, didn't notice much difference from either in my energy levels but the DMPS did help with some of my sensitiivities to smells. Still have problems with things I take orally.

Can someone tell me (and please talk to me like I'm in first grade)

1. how would I know I need to do a methylation?
2. Exactly what is the simplified protocol?
3. What do I need and how much, how often etc.

THanks so much.

 

[Freddd]

If this is simple then boy my brain is really a mess. This is way to much info for me. I appreciate the knowledge here but I cannot read large paragraphs and I totally check out with the technical jargon. I think I might need this but cannot wade through the information to decide. I know I need B12 and glutathione? I took liquid glutathion after DMPS chelation, didn't notice much difference from either in my energy levels but the DMPS did help with some of my sensitiivities to smells. Still have problems with things I take orally.

Can someone tell me (and please talk to me like I'm in first grade)

1. how would I know I need to do a methylation?
2. Exactly what is the simplified protocol?
3. What do I need and how much, how often etc.

THanks so much.

Hi Minkeygirl,

I can't say that any simplified protocol will heal a person. On the full active b12/folate protocol somewhere between 1:2 and 1:10 can recover in a year or two to the point that they can start the rehabilitation phase. Some damage will never heal. On the simplified protocol from what I have seen here and been told about others I would suggest that the odds are more like 1:100 to 1:10,000. I would suggest that you read the basics on the active b12/folate protocol. It appears to have substantially better performance for a substantially higher percentage of people with a more varied symtomology. It's not perfect and there are still some missing factors that are just not obvious. The two biggest roadblocks appear to be paradoxical folate deficiency and glutathione/NAC/whey induced folate and b12 deficiencies. The number one roadblock is also the number one signal flag that healing has started, low potassium.