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Rich - possible causes of methylation cycle block?

caledonia

Senior Member
Bringing this thread back around to the original intent....

While it seems logical that there have always been certain stressors, and certain people with the "right" genetics, and that CFS may have always existed in sporadic cases, there is also a history of CFS epidemics starting in the 1930's and a huge increase in these epidemics (pandemic) starting in the 1980's.

Which of the causes fit into that pattern?

Could XMRV have changed the genetics of millions of people?
 

richvank

Senior Member
Messages
2,732
Bringing this thread back around to the original intent....

While it seems logical that there have always been certain stressors, and certain people with the "right" genetics, and that CFS may have always existed in sporadic cases, there is also a history of CFS epidemics starting in the 1930's and a huge increase in these epidemics (pandemic) starting in the 1980's.

Which of the causes fit into that pattern?

Could XMRV have changed the genetics of millions of people?

Hi, Caledonia.

This is a very good question, and one that many people have struggled with for a long time now. It's difficult to prove that the incidence of ME/CFS increased in the 80s, because there is not good epidemiological data available on it from earlier years. However, it does seem that it would have received attention if it had been as prevalent back then as it is now.

Dr. Cheney and Dr. Peterson have always believed that a virus was involved in the Incline Village outbreak in the 80s. Dr. Cheney suggested to me a few years ago that a virus that was related to HIV was involved. Viruses mutate over time, and his suggestion was that it mutated and became less virulent, thus explaining why the epidemic ran its course.

I don't think anyone knows for sure, but I think that one candidate for causing such a change is vaccines. I'm very interested in the papers that are suggesting that vaccines that are developed in animals and then transferred to humans may carry pathogens with them, incuding mycoplasma and retroviruses. Apparently pathogens are able to share genetic material with each other when they are present together in the same animal or human, and that can develop new infectious pathogens.

Best regards,

Rich
 

caledonia

Senior Member
Hi Rich,

A mutating/disappearing virus is a very interesting idea, and one I haven't heard before.

I'm also very interested in vaccines as possible transmitters of animal pathogens to humans. It just seems to make sense. They've already proven that it happens in our pets, so why not humans?

It would be good to get another prevalance study and see if we're still at 1 million or if things are leveling off. The last good prevalance study was by Leonard Jason in 1999. The CDC estimate of 4 million doesn't count because it's studying a different disease.
 

Freddd

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

This is a very good question, and one that many people have struggled with for a long time now. It's difficult to prove that the incidence of ME/CFS increased in the 80s, because there is not good epidemiological data available on it from earlier years. However, it does seem that it would have received attention if it had been as prevalent back then as it is now.

Dr. Cheney and Dr. Peterson have always believed that a virus was involved in the Incline Village outbreak in the 80s. Dr. Cheney suggested to me a few years ago that a virus that was related to HIV was involved. Viruses mutate over time, and his suggestion was that it mutated and became less virulent, thus explaining why the epidemic ran its course.

I don't think anyone knows for sure, but I think that one candidate for causing such a change is vaccines. I'm very interested in the papers that are suggesting that vaccines that are developed in animals and then transferred to humans may carry pathogens with them, incuding mycoplasma and retroviruses. Apparently pathogens are able to share genetic material with each other when they are present together in the same animal or human, and that can develop new infectious pathogens.

Best regards,

Rich

Hi Rich,

I want to expand the considerations of viruses. Incline Village was not the first one. I have gotten hit my one or more viruses multiple times in large scale outbreaks. In the late 60s and early 70s there were occurrences around Labor Day with college and school openings delayed, I was sick with them both times and recovered more or less in a month or 3 except for 1969-70 where I was sick all autumn. I called the CDC. This wasn't one area but rather my sister's college opening was delayed in Arizona, several schools in Ohio and Maine, all of which I was aware of personally. The CDC said "nothing is going on". Then in 1987 (I think), I might be off a year and I was kicked out of my doc's at the time practice, there was a massive outbreak in Utah. My wife was ill for 6 months with it and that was the trigger of my 16 years of constant illness. She recovered after 6 months, I didn't. The doctors were flooded.

My favorite candidate for the viruses involved are the Coxsackie and/or Echo viruses, entero viruses that used to be called "non-paralytic polio" and were then included in the Polio epidemic statistics in the 40s and 50s as there was no way to differentiate them without lab tests. However, after the polio vaccines they started ignoring these viruses which were not included in the vaccines and unlike the Pox (variola) viruses don't generate cross immunity. The word "polio" was taboo because of the terror it generated so they were called "miscellaneous entero viruses". Post polio syndrome or Fibromyalgia are differentiated based on whether a person ever was diagnosed with Polio but with Echo and Coxsackie viruses (32 in all I believe) never dignosed as such suddenly we have a whole host of mystery diseases. People always used to get sick from these and they were included with Polio epidemic statistics. Suddenly nobody gets Polio but they still get ill from Echo and Coxsackie and they are now unidentified mystery diseases. Nothing is more invisible than something too taboo to even mention. These viruses also follow nerves just like Polio.

At Incline Villiage there appeared to be some centering around water facilities such as hot tubs and swimming pools just as with Polio according to some material I read. The outbreaks I participated in also had similar links. As entero viruses can be spread other ways the linkage was not exclusive.

Also, I have identified vaccines as one of the stress factors that leads to the same results as these viral illnesses whatever they are, even physical trauma, and they all end up with a crashed b12/folate methylation block/ methyl-trap etc that often doesn't end for years or decades without the right supplements. Animal pathogens are not required in this hypothesis as the target virus itself is sufficient because it is the stress on the immune system that triggers the unrecoverable deficiency pattern.

This is just a consideration as I do not know anything on this conclusively.
 

kurt

Senior Member
Messages
1,186
Location
USA
Hi Liz,
B12 has activity that regulates NO levels. Carmen Wheatly has written several specualtive papers on the role of b12 involving NO and inflammation. She was working with hydroxycbl being in the UK. I find that mb12 reduces inflammation very rapidly as does Metafolin.

This is particularly of interest given the recent discovery of high H2S levels in CFS patients. Elevated H2S actively blocks NO, as they are competing 'gasotransmitters' (not a typo, there are three known neurotransmitters that are gases, called gasotransmitters, including H2S, NO and CO). What I have wondered but have not been able to find an answer to (yet) is whether B12 actively or indirectly is involved (through GSH demand perhaps) in scavenging excess H2S. If so, that might make gut dysbiosis (and LGS) that produces excess H2S into a double-whammy for people with poor methylation genetics, both blocking NO and depleting B12. Then there will be no way B12 can properly regulate NO properly. Probably KDM has figured this out, but don't know if he has published anything connecting H2S and NO this way, but they are apparently chemical competitors.
 

Rockt

Senior Member
Messages
292
So..., (and this may be obvious to you guys, but I seem to be pretty slow in absorbing all this), does a low serum B12 level definitely indicate a methylation block?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
So..., (and this may be obvious to you guys, but I seem to be pretty slow in absorbing all this), does a low serum B12 level definitely indicate a methylation block?

Hi Rockt,

My estimation of what would be an asymptomatic level of b12 would be something like 6000-12,000pg/ml.

I need to maintain an estimated 200,000pg/ml to keep my nervous system from daily deterioration. Further, if I take folic acid without Metafolin at the same time methylation appears to shut down and I develop cell production problems starting within hours.

I used the term "methylation depletion" for years. It appears that the "methylation block" can occur within hours and go away just as quickly depending upon a number of variables.

A low b12 level can bring to a halt over 600 processes only some of which are methylation reactions most of which also involve methylfolate.
 

richvank

Senior Member
Messages
2,732
So..., (and this may be obvious to you guys, but I seem to be pretty slow in absorbing all this), does a low serum B12 level definitely indicate a methylation block?

Hi, Rockt.

It's best to use either the Health Diagnostics methylation pathways panel or the Genova Diagnostics Metabolic Analysis Profile to detect a partial methylation cycle block. Low serum B12 indicates that there is a B12 deficiency, and if it gets low enough, it will impact the methylation cycle, but I don't know at what level that occurs.

Best regards,

Rich
 

Freddd

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

It's best to use either the Health Diagnostics methylation pathways panel or the Genova Diagnostics Metabolic Analysis Profile to detect a partial methylation cycle block. Low serum B12 indicates that there is a B12 deficiency, and if it gets low enough, it will impact the methylation cycle, but I don't know at what level that occurs.

Best regards,

Rich

Hi Rich,

Low serum B12 indicates that there is a B12 deficiency, and if it gets low enough, it will impact the methylation cycle, but I don't know at what level that occurs.

Therein sits one of the big problems, serum b12 testing. That test is not predictive of much. As is spoken about in some research there is a "triage" that occurs with b12. This allows some reactions to occur and others not. So one can have epithelial tissues and neurology breaking down all over the body and yet have completely normal blood formation. There is no nice neat curve or predictability as one persons body might apply a completely different triage pattern than another's. To further confound the situation, once a tissue is damaged it appears to be abandoned in many cases when one is counting on the active distribution system. Maybe that is why diffusion levels of mb12/adb12 causes so much more healing and works on a lot more symptoms.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
Fredd - I've been reading your posts with great interest re detoxing and folic and folinic acid. I've been trying to do the simplified methylation protocol for almost 4 years, have been off and on, more off than on, because of unpleasant symptoms I attributed to detoxing. I've made only minimal improvement with my CFS in that time. So I'm very interested in waht you are saying about folate deficiency. I've ordered Metafolin today and am going to give it a try. I've been doing MB12 shots for several years with no noticeable improvement, but maybe that is because of a folate deficiency.

Also, what is ADB12?

I don't have the energy for any in-depth analysis of anything, but greatly appreciate all the info you are providing.

Mary
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Yeah, every time I try this protocol I seem to run into pretty bad crashes that completely throw me off. I always chalked it up to detox build-up but now I'm wondering if it was the folate that was screwing me up.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Fredd - I've been reading your posts with great interest re detoxing and folic and folinic acid. I've been trying to do the simplified methylation protocol for almost 4 years, have been off and on, more off than on, because of unpleasant symptoms I attributed to detoxing. I've made only minimal improvement with my CFS in that time. So I'm very interested in waht you are saying about folate deficiency. I've ordered Metafolin today and am going to give it a try. I've been doing MB12 shots for several years with no noticeable improvement, but maybe that is because of a folate deficiency.

Also, what is ADB12?

I don't have the energy for any in-depth analysis of anything, but greatly appreciate all the info you are providing.

Mary

Hi Mary,

I don't have the energy for any in-depth analysis of anything

If that is the Jeopardy "question" then the Jeopardy answer is below.
what is ADB12?

Adb12 has only two known functions. One of them is sitting in the mitochondria at the heart of the Krebs cycle producing energy. They produce ATP (body's energy currency) in the muscles making for overall energy and endurance. L-carnitine fumarate transports the fats to the mitochondria. Alpha lipoic acid increases the transport efficiency about 50% according to research, among other things. D-ribose helps to recycle previously used ATP back to ATP. When there is lack of adb12 MMA is produced by the broken cycle. In the neurons adb12 make energy in the mitochondria that affects the nerves, moods and personality, but very differently from mb12. The other function is processing lipids involved in making myelin sheathing for the nerves.

I've been trying to do the simplified methylation protocol for almost 4 years, have been off and on, more off than on, because of unpleasant symptoms I attributed to detoxing. I've made only minimal improvement with my CFS in that time.

I have been at this for nearly 8 years. In that time I've made about 2 years of progress in healing and the rest as rehabilitation. The rest of it has been like dieting, losing and gaining the same 10 pounds 20 times. I am just wrapping up the 2+ year setback of the glutathione induced folate deficiency. Every time I thought I had it beat up to now, what I now recognize as paradoxical folate deficiency would raise up and beat me back down. I've been suggesting the Metafolin as long as it has been available and many have found it satisfactory regardless of what they did with folic/folinic acid. Others, like me found it very satisfactory, sometimes. It was this variability that kept me looking for an additional "unknown" cofactor. It never occurred to me that it was one cofactor too many, like the glutathione which I had tried while looking for that "unknown". Then after the glutathione disaster I realized I was continually dropping back into folate deficiency despite the large amount of Metafolin I was taking. Then taking the folinic acid, for which Rich made a very convincing argument, I experienced the folate deficiency again, but differently. A few more occurrences put it into perspective. I had been taking folic acid for 40 years as a supplement and 51 years when including fortified foods along with cyanocbl and it had never changed anything that I could tell, except now in retrospect. How could I have been so blind for so long? Of course it was the availability of Metafolin that made possible the seeing of the differences. A person who is already deficient may not notice any change at all from paradoxical folate deficiency except things just don't get better. It is necessary to have a basis of comparison. Who knew that mb12/adb12 could be 100-10,000 times as effective as Hycbl/cycbl? Nobody at all was going to notice until it became easily available so a comparison could be made. And then it wasn't going to be noticed until they tried a 5 star brand. With injections of mb12 so variable and unreliable and almost all pharmacies preparing it under ordinary room light, and once a month injections almost totally ineffective it wouldn't be noticed.

So to answer the question-title of this thread, folic/folinic acid can cause a partial methylation block very quickly and maintained indefinitely. It can also be reversed with methylation started up again in less than 24 hours with mb12 and methylfolate in the absence of folic/folinic acid.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Yeah, every time I try this protocol I seem to run into pretty bad crashes that completely throw me off. I always chalked it up to detox build-up but now I'm wondering if it was the folate that was screwing me up.

Hi JPV,

You look to be close to my age. Remember back in the 50s and 60s when stomach ulcers were "caused" by stress and psychological factors and treated with cream and bland diets? Stomach ulcers were chronic misery for lots of people and basically it was played as "blame the patient". Until it was found to be caused by a bacterium and cured with a round of antibiotics which could have been done 30-40 years earlier if they had thought to question their theory. It was the same with erectile dysfunction until a little blue pill filled with instant psychotherapy called Viagra came out. And now the neurological and mood problems of b12/folate deficiencies are often called "conversion disorder" based on theories developed before vitamins were discovered. It is still a tough battle and many people refuse to believe that "only" a vitamin could have cured me unless it was purely psychosomatic, such as my stepmother and sister. I was even diagnosed with "conversion disorder", by a psychiatrist more than 40 years ago who is positive that a vitamin deficiency couldn't have caused my problems or fixed them, even now. I did something very few do. In the interests of provider education I wrote or called some of my former docs who had gotten it spectacularly wrong, and I had often told them the answer ("real" b12) starting in 1979 and gotten kicked out of their practices for it.

Yeah, every time I try this protocol I seem to run into pretty bad crashes that completely throw me off. I always chalked it up to detox build-up ...


This kind of statement, from you and many others, was an important clue in all this. It was this usage of "detox" that caught my attention right away, within days of my first post here. Elsewhere, most everybody has startup responses to the active b12/folate protocol, don't call it "detox" and immediately stop. Instead they keep going and everything smooths out and symptoms start going away. When people here started calling the startup responses to active b12/folate "detox" there was clearly an expectation causing a problem. When they had indefinite and worsening "detox" from hycbl/folic/folinic acid I can understand becoming gun-shy. When hypokalemia is called "detox" it can be a very dangerous misinterpretation. When I had the reaction with glutathione that was commonly called "detox" and it shared all the folate deficiency symptoms and Metafolin put a fast stop to it the answers started becoming clear. People expected "detox", so any reaction, whether of hypokalemia or folate/b12 deficiency onset and worsening or startup response of deficiency alleviation, it's opposite, were all called "detox".

now I'm wondering if it was the folate that was screwing me up

I wouldn't be surprised at all. Good luck.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
Whew- thanks, Fredd! Your theory is a little mind-blowing, going against everything I've learned, but I'm more than willing to give it a go. I am very curious to see how I tolerate the Metafolin as I have had such a rough time with the other folates. And if it pans out, I will be eternally grateful.

One more thing - can you provide a link to your B12 protocol? I came across a reference to it but cannot find it. Is the ADB12 an essential part of your recommended protocol?

Thanks again!

Mary
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Just for the record, the photo I'm using for my "avatar" is actually not me, it's actor Peter Cushing. I'm in my late 40's.

Hi JPV,

That gave me a good laugh today too. No wonder the photo looked familiar. How could I have missed it having watched so many things he was in.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Whew- thanks, Fredd! Your theory is a little mind-blowing, going against everything I've learned, but I'm more than willing to give it a go. I am very curious to see how I tolerate the Metafolin as I have had such a rough time with the other folates. And if it pans out, I will be eternally grateful.

One more thing - can you provide a link to your B12 protocol? I came across a reference to it but cannot find it. Is the ADB12 an essential part of your recommended protocol?

Thanks again!

Mary

Hi Mary,

http://forums.wrongdiagnosis.com/showthread.php?t=62327

This has the basics. The only significant change is about folic/folinic acid as you are seeing here.

Adb12 is essential. It is what deals with about half of the muscle pains, muscle atrophy (releasing the "adb12 "stored" in the muscle), muscle healing, energy generation, exercise tolerance, endurance, neurological functioning and myelin generation. Many if not most people can't convert enough from mb12 or other forms to ever fill the need once it is depleted. There are two other brands people are currently testing without folic acid.

Your theory is a little mind-blowing, going against everything I've learned,


Paradigm shifts tend to do that as they are revolutionary. I still know docs who favor "conversion reaction" for "stocking-glove" neuropathy patterns that are characteristic of distal nerve die-back in b12 deficiency. As the old quote says it "Physics theory advances one funeral at a time". Unfortunately in this case of b12 and folates the funerals are ours.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Hi JPV,

That gave me a good laugh today too. No wonder the photo looked familiar. How could I have missed it having watched so many things he was in.
Well, it is kinda small.

Do you enjoy his work on all those Hammer horror films that he did with Chris Lee? I'm a huge fan of all those films.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Well, it is kinda small.

Do you enjoy his work on all those Hammer horror films that he did with Chris Lee? I'm a huge fan of all those films.

Hi JPV,

I've probably seen every one of them, though some years back I must admit. There was also some Dr Who thrown in and of course Star Wars. Despite seeing him often I never knew who he was, not connecting the face with the name.