• 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.

Q & A with Dr. Neil Nathan, M.D. on methylation treatment

Rockt

Senior Member
Messages
292
Thanks for posting this Rich. Very interesting... and encouraging... BUT...

... while I think you've done great work and the methylation defect is real, one of the things that troubles me is how few people out here report positive results and how many of us have struggled with it. Could it be that the Simplified Protocol isn't so simple and requires the direction of a qualified practitioner?

Please note, I'm not criticisizing. I think everyone appreciates your huge efforts here and the methylation defect is obviously a real problem. It just doesn't seem like following the simplified protocol on our own is helping much with this problem. But I could be wrong and would love to hear from anyone who has improved as much as Dr. Nathan's patients seem to, by following the protocol on their own.
 

richvank

Senior Member
Messages
2,732
Thanks for posting this Rich. Very interesting... and encouraging... BUT...

... while I think you've done great work and the methylation defect is real, one of the things that troubles me is how few people out here report positive results and how many of us have struggled with it. Could it be that the Simplified Protocol isn't so simple and requires the direction of a qualified practitioner?

Please note, I'm not criticisizing. I think everyone appreciates your huge efforts here and the methylation defect is obviously a real problem. It just doesn't seem like following the simplified protocol on our own is helping much with this problem. But I could be wrong and would love to hear from anyone who has improved as much as Dr. Nathan's patients seem to, by following the protocol on their own.

Hi, Rockt.

Thanks for your comments. I've noticed the same thing. I think the key is that Dr. Nathan had treated these women for quite a while before they were given the methylation treatment. He had given them treatment for a variety of aspects of ME/CFS, as he described. It's beginning to look as though methylation treatment cannot be regarded as a stand-alone treatment for a person who has not yet been treated for these other aspects.

Here's the picture that I am coming to: The vicious circle mechanism that I've described, involving glutathione depletion, functional B12 deficiency, methylation cycle partial block, and folates draining from the cells via the methyl trap mechanism, is indeed the core of the pathophysiology of ME/CFS. However, a variety of possible factors can lead up to formation of this vicious circle mechanism in various PWCs. Furthermore, after this vicious circle has become established, the resulting dyfunction in the immune system and the detox system allows the buildup of infections and toxins, exacerbating the illness. The digestive system's function can also be degraded by a variety of causes, many of them stemming from the vicious circle mechanism.

When we then consider the state of a person who has been ill with ME/CFS for an extended time, there can be a "tangled web" of things going on, and in treatment, one has to start from where one is. The physicians I hear from who seem to be having the most success like to describe the process of treatment as being similar to "peeling an onion, one layer at a time." A few layers may need to be removed in order to be able to get to the core and treat it, and I still think that the core is this vicious circle mechanism I have described.

Some people seem to be able to treat the methylation cycle problem first, and experience some benefit, and then go on to dealing with other aspects that may still be present. Others seem to need to deal with these additional things first. I suspect that a high body burden of mercury would be in the second category, because mercury can block enzymes in the methylation cycle. But I think that infections that are able to hold glutathione down will also interfere with lifting the partial block and allowing glutathione to come up.

Well, that's where I am at this point on this issue. I had hoped that this would be the "silver bullet," but it looks as though additional "bullets" are needed in most cases.

And I do agree that a person should be under the care of a licensed physician while on methylation-type treatment. One reason is that there can be serious adverse effects, but another reason is what you've suggested: Physicians like Dr. Nathan have a lot of experience with treating the various aspects of ME/CFS, and they know how to patiently slog away at each piece until the person's body is able to come to recovery. What I have heard from some physicians is that their "toughest" cases had been treated for everything they could find in them, and when they learned about the methylation treatment and tried that, it turned out to be the last piece that was needed. So that may be the way we should view it.

Thanks again.

Rich
 

Vegas

Senior Member
Messages
577
Location
Virginia
Rockt,

I largely agree that the SMP is not likely to represent a treatment that brings about complete resolution of your health, but I have no doubt it provides some lasting benefits, and it is worthy of pursuit. One remarkable thing it did for me was to restore normal balance between the parasympathetic and sympathetic nervous system. This is something that has a tendency to occur in many people with fatiguing illnesses. This refers to the inability to tolerate any stressful situations, or stimuli. It gets progressivly worse as you become severely ill. I presume this has a lot do with impaired sulfation, which is involved in the metabolism of hormones and neurotransmitters. I know that before I could not metabolize epinephrine very well, as after I would have one of these huge releases of adrenaline in response to stress, I would sit in a fog for about an hour after that because my body apparently couldn't metabolize this stuff. Another significant gain relates to the improvement of my fatigue. It has improved slowly, but noticeably. Methy supplements have also helped restore my intestinal dysbiosis, which has steadily improved...it seems that much of the fatigue and brain fog relates to the intestinal permeability.

The physical "cost" of this has been one of some very unpleasant side effects, and there were a few periods of temporary regression; however, I feel so less "toxic" than before, quite frankly because I am. My liver enzymes are better, my gi tract is vastly better. I think in my cases I was restoring many parts of phase II liver detox. Obviously, there was still something holding the glutathione down. For me, and probably for many more than realize, mercury was holding this back. In just a month of chelating, I have finally noticed some real progress in my P.E.M.

The bottom line is, this treatment is likely to help, but you are going to have to take the clues available to you and address other problems concurrently.
 

caledonia

Senior Member
In the previous interview with Dr. Nathan on Prohealth he mentioned that the patients had been through Teitelbaum's SHINE protocol. This protocol includes everything but the kitchen sink.

Based on that, and my experience, I would also say that the methylation protocol is important but not a magic bullet in most cases. So far due to methylation, I've had a 90% reduction in MCS and was able to get off Zoloft (for anxiety) after 10 years. Also, I was able to stop taking betaine hydrochloride as my stomach acid came back up. So three big things, but not a total cure-all. Still very worth while doing though.
 

Rockt

Senior Member
Messages
292
Thanks guys. I agree with everything you've stated. (Sigh)... just wish it were all easier. However, it sounds like some docs are getting there with their understanding and experience and helping some patients improve greatly. I just wish there were more of them. Maybe that will come as well.