I’ve been reading about the “Glutathione Depletion – Methylation Cycle Block Pathogenesis Hypothesis for CFS” since forever, it seems, and finally did the MTHFR test. Result: a homozygous mutation in the C677T gene (two copies of the C677T mutation) as well as a deficient status for glutathione. Now the question: where do I go from here?
Dr. Thomsen’s Approach
I returned to Dr. Kate Thomsen in Pennington, NJ, for the actual testing. Dr. Thomsen, an MD who specializes in women’s health, is board certified in Integrative and Holistic Medicine and practices “functional medicine.” With a background in chemistry, she is incredibly knowledgeable about biochemical processes and used most of my hour with her diagramming and explaining various molecular reactions and transformations involved in the methylation cycle and their functions in my body. I nodded a lot; I understood some stuff momentarily but retain little. All the circles and arrows apparently described the very complicated process of detoxification which is screwed up because of my dysfunctional gene and glutathione depletion.
Her protocol includes oral supplementation with methylated folate and B vitamins, L Carnitine with Pantothenic Acid, a variety of vitamins and minerals, and glutathione, along with IV infusions of Glutathione, Methyl B 12, Folinic Acid and Phosphatidyl Choline. (That’s a funny word – phosphatidyl. Sounds like something I would name my cat.)
Dr. Thomsen is not, however, an ME/CFS expert. When I explained the warnings offered by Rich Van Konynenburg about the possible excessive die-off response and certain adverse effects in people with ME/CFS, she was not only unaware but skeptical. And her response, in turn, made me skeptical. She did agree that the IV infusions could be limited, small and “gentle.”
Dr. Rey’s Approach
Dr. Irma Rey at the Neuro Immune Institute in Florida has a much simpler approach. When she learned of my MTHFR mutation, she told me to take 400 mcg of Methyl L Folate and 500 mcg of Methyl Cobalamin (B12) daily. That’s it. And though Dr. Rey is the ME/CFS expert, she didn’t anticipate any die-off problems either.
Rich Van Konyenburg’s Approach
The simplified treatment developed from Amy Yasko’s program for autistic children by Rich Van Konynenburg (and Dr. Sarah Myhill) seems not so simplified. It’s more like Dr. Thomsen’s, with variations on the names, doses, and combinations:
- ¼ tablet (200 mcg) Actifolate (5 methyl tetrahydrofolate )
- ¼ tablet Instrinsic B12/folate
- folic acid, 5 methyl tetrahydrofolate and 5-formyl tetrahydrofolate, 125 mcg B12, 22.5 mg calcium, 17.25 mg phosphorus, 5 mg intrinsic factor
- ¼ tablet General Vitamin Neurological Health Formula
- 1 softgel capsule Phosphatidyl Serine Complex (Vitamin Discount Center)
- Activated B12 Guard 2000 mcg hydrocobalamin
His Health Rising article emphasizes the importance of starting this treatment very slowly, perhaps with one supplement at a time in decreased dosages, and only under the supervision of a licensed physician. (I wonder how easy it would be to find a physician who would be knowledgeable and comfortable enough with this treatment to supervise it. )
So whose plan do I follow?
As someone who has jumped into the most bizarre treatments in my checkered ME/CFS past, I am not looking for complicated exhausting procedures that eat into your life and make it nearly impossible to know what is having which effect. I’ve decided to take action here only because none of the above regimens seem to require massive amounts of time and/or energy.
I also don’t believe for one minute that this genetic mutation is THE CAUSE of my disease. I suspect, however, that it contributed and continues to contribute to my inability to deal with infections, stress, hormonal fluctuations, mitochondrial damage, etc. , etc.
So I am allowing myself to accept that supplements might promote better detoxing and therefore a better sense of well-being. Is that crazy after all these years?
I’ve chosen Dr. Rey’s very abbreviated approach to start, and have begun the methyl –l-folate. Soon I’ll add the methyl-cobalamin. And we’ll see where I go from there.
In the meantime, I have stopped taking Low Dose Naltrexone, which I tried again after my Florida visit in July. Even in VERY low diluted doses taken in the morning, my sleep gets messed up. When I first started it a few years ago, I found it took hours for me to fall asleep. More recently, I began waking up 3 or 4 times each night. Both times the problems stopped after I ditched the LDN. I’ve also been experiencing unusual headaches, which I (sort of, with no evidence) suspect might be the result of LDN.
Ouch. All this mystery. Is it ironic that I’m now reading Dante’s Inferno — and in my worst days can relate to the plight of the shades trapped in a hideous ditch in the Eighth Circle who keep sticking their noses out of the boiling tar seeking to alleviate their pain?
Okay, I apologize for the hyperbole, but I couldn’t resist.
I guess all this is to say that I’m still on the lookout for some help, in spite of my “advanced age” of 71, though there are definite limits as to the stress I’ll accept in any treatment.
Health Rising’s September Drive – Carol Leflet’s 20-plus “Chronic Fatigue Syndrome Chronicle’ blog series on Health Rising has uniquely documented the challenges ME/CFS patients face. From her blogs on “crashing”, to when to turn off our “addiction for a cure”, to the challenges older people with ME/CFS face, Carol’s blogs have opened up fruitful and important discussions for people with ME/CFS and/or FM. They are another reason to keep this website healthy Please support Health Rising in its $5 a month recurring donation drive.