I came across this blog here http://www.cfsrecoverypath.com/tools/a-summary-of-leading-cfsme-protocols-part-1-tool/which reminded me to detail my experience with the Methylation Protocol and other supplements in the hope that others may find it useful.

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Rich Van Konyenburg Protocol

Rich Van Konyenburg

Overview – An independent researcher from the USA focusing on glutathione depletion as the central cause of CFS/ME.

Focuses primarily on: Blocks in the methylation cycle and glutathione depletion

Method: A specialised nutritional protocol primarily utilising antioxidants

Estimated time before clinical results: 6-9 months

Research, Publications & Further info: A link to the awesome site aboutcfsme.com where all the info on Rich Van K’s work can be found.

My 2 cents: I’m glad Rich has PAYG Summary Flying Souls 2011-12thrown his intellectual weight behind the CFS/ME recovery bandwagon. He is smart and has put forward an interesting hypothesis which is being absorbed into many other peoples thinking. Glutathione appears to be the antioxidant on people’s lips all throughout the medical world.

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Now one phrase that springs to mind when considering all these different protocols is “will it work for me?”. There are some like Nancy Klimas who state that there are certain biomarkers for M.E, Low NK cell activity, post exertional malaise, low CD4/CD8 cells and so on and I am inclined to agree.

However, as stated by Dr Neil Nathan, who pioneered a study with Rich Van Konyenburg. “This concept was pioneered by Dr. Amy Yasko, who was working primarily with autistic children. She found that by treating methylation blocks many autistic children recovered to a remarkable extent. She suspected that other illnesses, such as chronic fatigue, fibromyalgia, Parkinson’s disease and other neurodegenerative diseases had a similar problem. Dr. Rich van Konynenburg, a biochemist, picked up on her concept and applied it to chronic fatigue and fibromyalgia. In a series of papers, he demonstrated that virtually every known biochemical imbalance known to occur in fibromyalgia and chronic fatigue could be explained by this inability to methylate properly. ”

Could something as simple as methylation blocks and gluthatione depletion be causing the array of symptoms I was suffering with? Only one way to find out? I was sure this wouldn’t cure my HHV6 or fix my broken immune system (I will get into that later) but it might help with my crushing malaise and fatigue that prevents me from leaving my bed, so being a curious soul I ordered all the supplements. Bearing in mind this was a year ago now, my progress has been rather slow but steady.

I was already taking the Myhill Regime plus other supplements known to fuel ATP at this point in 2011, Magnesium Malate, Co-Q10, NADH and Rhodiola. I then added in Thiamine, Pantethine and Alpha Lipoic Acid. Slowly I started to introduce Methyl-B12, Pyridoxal 5 Phosphate and Methyltetrahydrofolate and the difference was astounding. I was able to slowly start concentrating on writing again which was something I had lost since becoming severely affected. I could get up and dressed without collapsing and stay up for a few hours, no more than three whereas before I was confined to my bed. I could stand in the shower without the feeling of fainting. This in terms of quality of life was tremendous. I could pop out the house if I needed to, only on a good day mind. So far the protocol has affected my concentration and energy levels, it hasn’t hit the pain relief or sleep. The POTS symptoms are still pretty severe, I still get massive heart palpitations and blood pooling, dizzy spells, migraines and burning spinal pain but to get relief from that crushing fatigue that only an M.E sufferer can understand is something I could kiss Rich Van Konyenburg for (I hope he doesn’t read this). Some days it is still there but on good days I can sometimes feel human again and I wish everyone could experience this for themselves. If you are reading this blog, then I urge you, please please try this protocol.

Now on to the viral symptoms and clapped out immunity. There is a Professor in Cape Town called Patrick Bouic who has been researching a product called Moducare on HIV patients and he has some quite good results. I was fortunate enough to be able to see Prof Bouic for myself in the beautiful country of South Africa and he tested my CD4 cells in vivo and they basically are dead. I have ok CD4/CD8 cell numbers so I don’t present like an HIV patient yet but the activity is pretty much nil. I can’t fight any virus and have no protection against cancers, bugs, infections despite me supplementing like crazy. I wondered how long I’d had this, I suspected it was long before the HHV6 got hold, as a child I was constantly rushed into hospital with gut infections and as a teenager I’d get infected abscesses in my ear that required hospitalization to drain, I couldn’t fight the infections even then and needed aggressive antibiotic therapy. When the HHV6 got hold it smashed my body into smitheerens. Whatever immunity I had was gone leaving me post M.E in and out of hospital on IV antibiotics with infections in my biliary tree/gallbladder (they haven’t figured out which yet, another story for another day) and weak and frail. I am trying the moducare but so far no evidence of it working but it’s not been long. I am also taking AHCC to stimulate my NK cells. This is a Japanese product and has had good results on HIV and Cancer.

http://altmedicine.about.com/od/herbsupplementguide/a/Ahcc.htm

http://www.mskcc.org/cancer-care/herb/ahcc

So that is that. I still take the Now Foods Immune Renew as this combination of mushroom blend, beta glucans and astragalus stops that constant viral feeling although like everything it comes and goes.

I also have a T2 immune response which is pretty bad as far as it goes. I don’t know if the moducare will regulate that. I am considering Ampligen in the future but again it’s cost and convenience of location (New York is about as inconvenient as it gets!).

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1 Comment (+add yours?)

  1. bonaboots
    May 06, 2012 @ 17:16:06

    It has been shown that the Human Gamma Retrovirus that is found in ME patients by some scientists interferes with methylation, and methylation controls the gene switches known as epigenes (above the genes, in latin). It all begins to make sense.

    Thanks for the info on Rich’s protocol, great blog.

    Reply

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