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Immune system treatment of the methylation cycle

Messages
85
We have believed for many years that ME CFS is related to an immune system dysfunction. We worked with the Late Rich van Konynenburg on the methylation cycle the work suggests a supplement protocol which also addresses MTHFr genetic abnormalities seen in our work with Jonathan Kerr many years ago.
Derek Enlander MD
New York
 

perrier

Senior Member
Messages
1,254
Dear Dr Enlander
What sort of results did patients obtain following the supplement protocol you refer to? Were they cured? Could they return to school or work?

Dr Kerr was the kindest chap! As a desperate mom, I just rang him up, and he was very attentive.

And Dr. Enlander, if you believe that ME is an immune dysfunction, can you offer your input to the various teams working on this monstrous illness. There is Dr Davis in Stanford. There is Dr Scheibenbogen in Berlin. And others in the usa.

We have very sick family members, who have suffered for many years at very extreme levels. Our children, who are adults, cannot endure such suffering for very much longer.Thank you.
 

perrier

Senior Member
Messages
1,254
The other point I needed to make Dr Enlander is that many severely ill patients are extremely sensitive to various supplements and cannot tolerate them, or have such severe GI problems that they cannot swallow a raft of pills.

Please let us know if you treated the severely ill. Thanks you.
 
Messages
85
Dear Dr Enlander
What sort of results did patients obtain following the supplement protocol you refer to? Were they cured? Could they return to school or work?

Dr Kerr was the kindest chap! As a desperate mom, I just rang him up, and he was very attentive.

And Dr. Enlander, if you believe that ME is an immune dysfunction, can you offer your input to the various teams working on this monstrous illness. There is Dr Davis in Stanford. There is Dr Scheibenbogen in Berlin. And others in the usa.

We have very sick family members, who have suffered for many years at very extreme levels. Our children, who are adults, cannot endure such suffering for very much longer.Thank you.
We are in the process of expanding the methylation cycle research, deriving patients who have and have not a genetic MTHFr mutation. The supplement protocol for both groups is slightly different.
Patients will use the supplements based on Rich van Konynenburg protocol . Patients will be obtain the supplements and shall be monitored weekly, by email questionaire .
Patients who are interested in joining this research should contact me at denlander@aol.com.
We have limited research funds, donations towards patients who cannot afford the supplements would be appreciated.
 
Messages
85
We are in the process of expanding the methylation cycle research, deriving patients who have and have not a genetic MTHFr mutation. The supplement protocol for both groups is slightly different.
Patients will use the supplements based on Rich van Konynenburg protocol . Patients will be obtain the supplements and shall be monitored weekly, by email questionaire .
Patients who are interested in joining this research should contact me at denlander@aol.com.
We have limited research funds, donations towards patients who cannot afford the supplements would be appreciated.
did you contact Jonathan in South America? The St Georges Hospital were disgusting when they refused to give him tenure. Basically taking his job away, I offered him a job at Mount Sinai in New York.
 
Messages
85
The other point I needed to make Dr Enlander is that many severely ill patients are extremely sensitive to various supplements and cannot tolerate them, or have such severe GI problems that they cannot swallow a raft of pills.

Please let us know if you treated the severely ill. Thanks you.
yes we realize that ME CFS is multisystem, and patients have GI symptoms, Dr Chia has studied this in depth. Chronic constipation is a problem in some patients, it should be treated. Other patients have the reverse problem , diarrhea which indeed can cause problems including dehydration.
MAF878 is grown in yoghurt and has helped some GI problems in ME CFS. It also activates NK cells.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Dear Dr Enlander
What sort of results did patients obtain following the supplement protocol you refer to? Were they cured? Could they return to school or work?

Dr Kerr was the kindest chap! As a desperate mom, I just rang him up, and he was very attentive.

And Dr. Enlander, if you believe that ME is an immune dysfunction, can you offer your input to the various teams working on this monstrous illness. There is Dr Davis in Stanford. There is Dr Scheibenbogen in Berlin. And others in the usa.

We have very sick family members, who have suffered for many years at very extreme levels. Our children, who are adults, cannot endure such suffering for very much longer.Thank you.
I have MTHFR snps. Before I confirmed this, I had quit gluten and dairy, which improved my terribly over-active nervous system within a week. I then followed Freddd's Protocol, which was the right approach for me. And I spent 3 years detoxxing, following Klinghardt's suggestions.

None of this has cured my fundamental ME, but it has given me a reasonable quality of life. I consider myself moderately ill. In the process I also uncovered sulfur and histamine intolerances. I eat a limited range of foods, and am also one who's intolerant to gluten cross-reactive foods. So no grains or beans in my diet. But I'm no longer a nervous wreck, and mostly don't have the noxious symptoms I lived with for years. I don't do much, but I've adapted to that. My lifelong tendency to insomnia, which had become chronic and debilitating, resolved when I had adequate B12.
 

perrier

Senior Member
Messages
1,254
Dr Enlander mentions MAF878 in an earlier post. Where is this obtained? I looked on line and really have not come up with a place to buy it.


I bought a product to make yogurt (forgot the name) from Klinghardt's website, and it was tried several times, but no real results.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
We are in the process of expanding the methylation cycle research, deriving patients who have and have not a genetic MTHFr mutation. The supplement protocol for both groups is slightly different.
Patients will use the supplements based on Rich van Konynenburg protocol . Patients will be obtain the supplements and shall be monitored weekly, by email questionaire .
Patients who are interested in joining this research should contact me at denlander@aol.com.
We have limited research funds, donations towards patients who cannot afford the supplements would be appreciated.
This is about far more than a MTHFR SNP. What about patients who have MTR, MTRR, BHMT, TCN2, COMT, NAT2, PEMT, and glutathione SNPs? All of these can have an impact, too.

Our doctors have been helping my family with methylation issues for 9 years, and we've found that environmental factors, like heavy metal and mold toxicity, stress, physical activity, illness, and mitochondrial membrane health dramatically change the amount and ratio of 5-MTHF, MB12, AB12, HB12, TMG, R5P, P5P, magnesium, potassium, methionine, glycine, glutamine, NAC, B1, and molybdenum the body needs.

A canned methylation protocol is at best a stsb in the dark. Personalizing methylation protocols and adjusting as needs change over time is a lot more successful.

Wull you be personalizing for patients in your study?