Methyl for some works but then stops? Could it be that....

[place]

I have noticed that many people bennift from the protocol but then it stops working.

Any supplements or medications that are working then stop working seems to be a common theame with people with ME.

Prior to the protocol, I was taking CoQ10 and i had a ton of energy for the first few weeks, then nothing.

Could it be that once one area is supplemented that it depletes another area and just moves the problem further down the chain?

Just some thoughts...

 

[adreno]

I have noticed that many people bennift from the protocol but then it stops working.

Any supplements or medications that are working then stop working seems to be a common theame with people with ME.

Prior to the protocol, I was taking CoQ10 and i had a ton of energy for the first few weeks, then nothing.

Could it be that once one area is supplemented that it depletes another area and just moves the problem further down the chain?

Just some thoughts...

Yes, I suppose this is possible. The more likely explanation, in my opinion, is simply that the body reverts to it's former set point. The human body is remarkably efficient at maintaining homeostasis.

 

[nanonug]

I have noticed that many people bennift from the protocol but then it stops working.

This goes back to the "band-aid" idea I posted about before. Unless you find the root cause for whatever is causing the ME/CFS symptoms, nothing is ever going to make you feel at 100%.

 

[place]

Adreno- So it our homostasis is off? Our bodies have a great deal to balance out but there has to be some effective treatment to overide this process. I know it controls our tempeture and some other stuff but I think it is time to pull out my human physiology notes.

Nanoug- What if the route cause is methylation? Or to convert one of the factors? I have been dying to ask you why you think this protocol is a temporary fix? I just did not want to put you on the spot. I assume you have tried it. What went wrong and when did it stop working?

 

[nanonug]

Nanoug- What if the route cause is methylation?

Place, stop misssspeling my nickname, it hurts my tiny feeling!

I honestly don't think that the root cause in the vast majority of ME/CFS cases is related to methylation. My "gut feeling" - pun intended - is that in the vast majority of cases there is some kind of infectious agent wreaking havoc in one's body.

I have been dying to ask you why you think this protocol is a temporary fix?

Please, don't die until you actually find your practice husband number 3. Anyway, methylation helps in one very important aspect, that of increasing intracellular glutathione levels (at least if done right.) This has all kinds of beneficial effects on the body.

I just did not want to put you on the spot.

Feel free to put me on the spot at any time. Just make sure the spot is big enough 'cause my belly is bulging...

I assume you have tried it. What went wrong and when did it stop working?

I have tried methylation. Nothing went wrong. I am still doing methylation support. Methylation-wise, this is probably enough for most people: Pure Encapsulation Multi t/d, which is what I take. In addition, I also take TMG and methionine. However, this is not going to resolve an overgrowth of Morganella morganii in my gut, which I have, and a potential and somewhat nasty viral disease, which I may have (awaiting confirmation, will not disclose yet.)

My suggestion to you and all other PwME is to screen for as many bacterial and viral infections as possible. This is what I believe is the root cause.

 

[Little Bluestem]

The human body is remarkably efficient at maintaining homeostasis.

One time, somewhere, I read CFS defined as "failure of the body to maintain homeostasis". It was a few years ago before quite as much was known about ME/CFS, but I still think it is a pretty fair definition.

 

[adreno]

Adreno- So it our homostasis is off? Our bodies have a great deal to balance out but there has to be some effective treatment to overide this process. I know it controls our tempeture and some other stuff but I think it is time to pull out my human physiology notes.

For adaptive reasons, our bodies have maneuvered into a set point, or biological configuration if you will, that is different from the biological set point of healthy people. Nevertheless, our bodies will strive to maintain this set point.

We can measure different kinds of biomarkers associated with this disease (such as low cortisol levels for instance), but that doesn't mean that these abnormal biomarkers are causative, or that normalizing them will lead to remission. The biological changes might very well be adaptive (compensatory). For example (and I am just guessing here), cortisol levels might be lowered in ME patients, because this will allow the immune system to fight viral infections more effectively. So if you then take any substance that artificially increases cortisol levels, the body will do everything it can to bring the levels down again. You might experience increased cortisol levels for a while, but usually your body will then compensate.

Likewise, the feeling of fatigue and malaise that accompanies ME are probably what is known as "sickness behavior", instructing you to rest, so that your immune system can work optimally, and you don't induce any further damage. This is similar to pain, which is a feedback signal instructing you to stop or change some behavior, as it is causing you damage. You could override the pain and fatigue by taking amphetamine, but likely this will only make you worse in the long term.

The upshot is that normalizing biomarkers is not likely to work in the long term. You need to find and correct the root cause(s) that induced the adaptive changes in the first place. In this sense I agree with nanonug; if you have a chronic infection going on (and I am not saying this is the cause of ME), then your biological values (set point) will never return to normal until the infection is controlled.

 

[freshveggies]

this tread worries me as I don't want to be sick forever. My doctor said that I have recurring EPV and cytomegalovirus. She want me on Valtrex. What are your thoughts.

I was on Valtrex and then quit so I could get the methylation protocol down better. I am feeling better on the methylation vitamins. (Freds). I tried the short version but just got severely worse by the day.

She also wants me on GcMAF. High Nagalase

 

[adreno]

this tread worries me as I don't want to be sick forever. My doctor said that I have recurring EPV and cytomegalovirus. She want me on Valtrex. What are your thoughts.

I was on Valtrex and then quit so I could get the methylation protocol down better. I am feeling better on the methylation vitamins. (Freds). I tried the short version but just got severely worse by the day.

She also wants me on GcMAF. High Nagalase

In my opinion these treatments are more likely to help than methylation supps.

 

[freshveggies]

I kind of put them on the back burner as I was really going downhill and the methylation vitamins are helping me just to get by and not think I have one foot in the grave at all times. Thanks for your thoughts. I know I will have to re-introduce the valtrex and then look into the GcMAF. I was just hoping my doctor could get the yogurt version soon.

 

[alex3619]

There are three reasons I have been thinking about in relation to the issue of supps not working. One of them is indeed that it drives problems in other areas - we have so many problems that we just shift them around. Another is that we have homeostatic issues - in the 90s I was working on that model until in the late 90s I moved to the idea of biochemical drivers. If something is driving the disease, and we change the landscape (supplements) then we will try to balance it all, and we are not balancing things right. So I think nanonug has a point too.

However there is a third option. What if there is an adaptive pathogen. If we push, it will push back. This has hardly ever been discussed. I find it hard to credit that a virus has the capacity to do this - it would have to be something like a bacteria (or yeast etc.). In other words, a more complex organism.

As I write this I have come to consider a fourth option. What if there is a landscape of pathogens. Sure, viruses don't have the genetic and sensory capacity to drive something so complex, but what if its a community of interacting pathogens? Viruses would not then be ruled out.

The real answer is nobody knows. Until we have the objective data that tells us, we will continue to guess, and try to fix it by ourselves.

On one occasion (mid to late 90s) I noticed a complete remission of my energy deficit (not fatigue) on one simple treatment. This was an accidental discovery. It then stopped working about three days later. I doubled the dose and went back to high energy. Then it stopped working again. So I doubled the dose again. Same deal, stops working after three days. Something is going on, that is for sure. I don't want to mention what the treatment was because I know people will try it and its not a good idea. Anyway as a result of this and other factors I began a search for the solution, though I have never found it.

The doubling problem indicates strongly that there is some kind of adaptive mechanism, but it doesn't completely rule out induced deficiency. I would really like the answer to this.

Bye, Alex

 

[maddietod]

Very interesting. I just gave up on methylation after a year +. Starting up, on Rich's or Freddd's protocols, I got a huge boost. It didn't last, but I continued, hoping for long-term results. I've ended up with no improvement in energy levels, but all of my skin rashes have disappeared, and cotton-brain is a thing of the past. Unfortunately, my memory is now shot.

I had a terrible gut reaction to L-Carnitine, which lasted for 4 weeks. I went of all of my supplements for the entire month of May. 4 days ago I re-started my sleep support (2 L-Theanine, 4 L-Tryptophan), and it helped immediately but I noticed I felt hungover during the day. Last night I took only 2 Tryptophan, and I slept (relatively) well with no hangover.

My energy is back to where it was when I was on all those methylation and adrenal supplements.

 

[caledonia]

My understanding is, it's not either/or. It's both. So you have to get methylation restarted AND you have to correct anything else which is dragging down glutathione, i.e. viruses, toxins, etc. For some people, it might be enough to do one or the other, but for others, they need to do both.

 

[nanonug]

you have to get methylation restarted AND you have to correct anything else which is dragging down glutathione, i.e. viruses, toxins, etc.

This is my current "position" too.

 

[caledonia]

To clarify, getting rid of viruses and toxins is also a part of methylation (or more technically, glutathione depletion). So, the methylation protocol restarts methylation which raises glutathione, AND getting rid of viruses and toxins stops glutathione depletion, which raises glutathione. So it's all different aspects of the same thing, not two different things.

 

[richvank]

Hi, Caledonia and nanonug.

That's where I am, too. I still believe that the glutathione depletion--functional B12 deficiency--methylation cycle partial block--folate depletion vicious circle is the core of the pathophysiology of ME/CFS and the thing that makes it a chronic condition, but fixing this is not enough for complete recovery for most PWMEs. Infections and toxins are the other things that need attention in most cases. They can have been contributors to the onset, i.e. part of the etiology, or they can have accumulated after onset, because the immune system and the detox system have been dysfunctional as a result of the vicious circle elements. Various pathogens have ways of hiding from the immune system or of interfering with its normal response, so that if they have become well-entrenched, they will need to be treated specifically. Even so, it seems that they still contribute to residual oxidative stress after the vicious cycle has been lifted. I suspect that this occurs because the immune system produces ongoing inflammation in its debilitated attempt to knock out the pathogens, and oxidative stress is part of inflammation.

Best regards,

Rich

 

[place]

Alex- as always, you raise some interesting points. I think the pattern of trying something and it depleting or breaking it down the chain would produce one effect. But doubling something that has worked would not, because its broke some else in the chain or depleted the cofactor would yield a different result. You have given me a bit to think about!

As with many on this thread I feel we have a genetic predisposition in that something is broken either with our immune system or methylation system that has allowed co-infections or produced damage on our organ/brain/etc .... hardware… if you will.

However, logic will not prevail due to the quick shift in response to supplements. A +B does not equal C.

It reminds me of drug tolerance- what process allows us to become tolerant? Could those principles be applied?

 

[place]

Also,
I wonder if a virus/bact. use what was depleted as fuel. So if Sam-e helps Virus A, then you just feed the beast and now there more and there for one needs to take twice as much make an affect . just some thought rattling around in my head...

 

[place]

Nanonug-
uncontrollable laughter, thanks for the post. Sorry about the name, I can't spell anything over 5 letters. I really lucked out with my name!

 

[Freddd]

I have noticed that many people bennift from the protocol but then it stops working.

Any supplements or medications that are working then stop working seems to be a common theame with people with ME.

Prior to the protocol, I was taking CoQ10 and i had a ton of energy for the first few weeks, then nothing.

Could it be that once one area is supplemented that it depletes another area and just moves the problem further down the chain?

Just some thoughts...

Hi Place,

Lots of folks who have start and stop healing run out of one thing after another. Getting things going and keeping them going is an art.

There is a reset of setpoint as well. This involves the perception of "brightness" and energy. These diminish in some months and feel "normal" though remaining at the higher levels as it is a perceptual thing and our body re-regulates our perceptions in a couple of months after a steadystate is reached. That doesn't happen this quickly with mb12 etc. With the titration except for induced deficiencies it takes up to a year or so because it is a moving target.


DISCLAIMER
I am a self taught systems analyst and consultant. I am not credentialed, certified or licensed to do anything besides drive a car. I have been disabled by the disease processes being discussed and affecting neurology in a multitude of ways for 10 years and impaired in a variety of ways and levels for 54 years before that. Everything I say is my opinion, synthesis, understanding or otherwise of my own creation except direct attributed quotes. Approximate paraphrases are also my interpretation of what I have read. All of this is at best my data analysis, understanding, synthesis and hypotheses and not to be construed as medical advice. I am not responsible for anything you do with any information provided in any way. Anything you do is your own responsibility and at your own risk. There are no published peer reviewed studies backing up my opinions or statements, except the incidental ones quoted or implicit in my synthesis or understanding, and then only in so far any reading of such papers may confer. Your interpretations, actions and variations of what I say are strictly at your own risk.