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    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.

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questiosn for rich

U

uni

Messages
52
Hi Rich,

I have had what appears to be CFS symptoms for about two years now. Mine was a gradual onset during a period of stress. I am not as severe as most people here. I've never been bed bound and can partake in most daily activities - but greatly reduced and I cannot exercise. I am probably a 50 or 60 on the Bell scale.

I am interested in following the methylation protocol and had some questions for you.

1. I've already started taking hydroxocobalamin and methylfolate. At first I experienced some symptoms, but they quickly went away. I actually don't feel much different when taking these supplements, even in higher amounts like 4 or 5 mg of methylfolate. I have not yet added the folinic acid because I don't have it at the moment. Is it likely that I have a methylation problem? I definately react to methycobalamin. If I don't feel anything on the protocol, should I switch the hydroxo to methylcobalamin?

2. How important is it to get the Methylation Pathway Panel? Could a specific treatment plan be tailored based the results of this test? What other tests do you recommend be run?

3. How many people are you aware of that have recovered through methylation treatment?

Thanks for all your work
 
R

richvank

Senior Member
Messages
2,732
Hi Rich,

***Hi, uni.

I have had what appears to be CFS symptoms for about two years now. Mine was a gradual onset during a period of stress. I am not as severe as most people here. I've never been bed bound and can partake in most daily activities - but greatly reduced and I cannot exercise. I am probably a 50 or 60 on the Bell scale.

***I'm glad to hear that your condition is not worse.

I am interested in following the methylation protocol and had some questions for you.

***O.K., I'll try to answer them.

1. I've already started taking hydroxocobalamin and methylfolate. At first I experienced some symptoms, but they quickly went away. I actually don't feel much different when taking these supplements, even in higher amounts like 4 or 5 mg of methylfolate. I have not yet added the folinic acid because I don't have it at the moment. Is it likely that I have a methylation problem? I definately react to methycobalamin. If I don't feel anything on the protocol, should I switch the hydroxo to methylcobalamin?

***I can't say whether you have a methylation problem without some testing. There are a variety of possible reasons why you might not be responding to the protocol.

2. How important is it to get the Methylation Pathway Panel? Could a specific treatment plan be tailored based the results of this test? What other tests do you recommend be run?

***I think this panel is very helpful, both to determine whether you have a partial methylation cycle block, glutathione depletion, and folate loss from the cells, and to provide baseline data for comparison later if you do a methylation treatment. Symptoms are not always a good guide about progress, and having the numbers is very helpful to gauge how it's going. I suggest the same protocol for everyone who has a partial methylation cycle block, unless there is additional testing that shows some particular deficiencies of vitamins or minerals. I also like the Metametrix 40 plasma amino acids panel, such as from www.directlabs.com. Depending on the budget, having a urine organic acids panel, such as the Genova Diagnostics metabolic analysis profile is very helpful, too. Some people run a Metametrix ION profile or a Genova Diagnostics NutrEval profile. These include a combination of panels that complement each other, so that the combination is more than the sum of its parts, so to speak.

3. How many people are you aware of that have recovered through methylation treatment?

***From our clinical study in which there were 30 women, two or three were able to return to full-time work. From anecdotal reports received from people on the internet, there have probably been two or three more. I don't get regular reports from physicians who use this treatment, but my impression is that some have had good success with it. People who get well tend to go and live their lives, and don't hang around reporting how they are doing, so it's difficult to know how many have recovered completely. I do frequently receive emails from people reporting that they are considerably improved. Most people do seem to improve quite a bit on this treatment, but for most it seems that some other specific things must be treated in addition, and they are not the same in each case. Some of them were probably present prior to onset of ME/CFS, and were likely contributors to the onset. Others probably accumulate after onset, because the immune system and the detox system are dysfunctional during ME/CFS. Here is a list of the ones I'm aware of: HPU (hemopyrolactamuria), biotoxin illness (such as due to mold toxins), Lyme disease and its coinfections, viral and possibly retroviral infections, and high body burdens of toxic metals. Serious dysfunction of the digestive system can be an impediment to absorbing nutrients and excreting toxins, and can interfere with recovery. There are many interactions between the digestive system and the vicious circle mechanism involving the partial block in the methylation cycle, so it appears that in many cases the gut and methylation must be brought up together. I believe that the partial methylation cycle block is the core of the pathophysiology of ME/CFS, but these other factors can be present as causes or effects, and can hinder complete recovery.

Thanks for all your work

***You're very welcome. I hope you have success.

***Rich
 
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