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Thank you for your in depth and thoughtful reply Celticphoenix — many good points, some which I’ve looked into, but perhaps not seriously enough.

Yes, I think in hindsight, my worsening during the last 4 years or so is due not only to a ‘partial methylation block’ supplement protocol (all the rage in the CFS community for the last 6 years or so) which made my anxiety/irritability/and thus cortisol/adrenalin go crazy, worsening the muscle catabolism that showed up on a ‘NutrEval’ test from late 2010, but due to the fat intolerance issue which was kind of coming and going but is worse now — I’m sure that because I can’t eat much fat, that I’m no doubt not getting enough calories — which is probably causing me to break down more muscle for fuel, and reducing my ‘energy’ BIG time. !!!

And good points about the copper/zinc issue. I was diagnosed back in late 2011 with a ‘hidden’ copper toxicity. Although I’m a little skeptical of the diagnosis, I did do a ‘zinc tally’ test, where one takes some liquid zinc, and if it has a strong metallic taste, then that suggests zinc sufficiency, but if there is no taste, then that supposedly means one is zinc deficient. My sister tasted it — and got the metallic taste instantly?but it just tasted like water to me.

And I was taking both a zinc/copper supp at times, and also a copper-only supp at times prior to this (probably six months to a year before) and it _seemed_ like when I took the copper only, my anxiety went sky-high. So that’s kind of how I ended up with the copper toxicity specialist. I haven’t done the zinc tally test in over a year, so will try to get that again, but it was pricey. And I do go to my medicaid doc on thursday, so I’ll ask if they can test for copper, ceruoloplasmin and neutropenia. Medicaid docs are pretty worthless, but who knows?may be pleasantly surprised.

Also, I’m going to ask about antibodies to parasites. My last two stool tests came back negative, but those buggers can be in the liver, pancreas, heart, etc., so will see how receptive he is to that.

I have been taking the betaine HCL (8 per meal!) and also digestive enzymes?and still stomach and gut motility is slow. Some say there are enteroviruses in the stomach, and that the vagus nerve can be infected (which influences stomach acid production) so I could ask the doc about that too.

Lastly, about a month back an herbalist friend in the UK suggested I take NADH to help with my poor krebs cycle results (also from 2-3 years ago). (I got so caught up in all the methylation stuff, and didn’t quite understand the importance of the krebs cycle, that I kind of put that aside.) But after reading more from Ben Lynch and others, they say if one is really sick, to fix the krebs stuff first, then proceed to methylation.

So I got the NADH?hadn’t noticed very much of a difference, but was told to add niacin (its precursor) in higher doses. I was perhaps too cautious, as it wasn’t until last night that I got a ‘niacin flush’ — face got all hot, ears were burning (and bright red!), but I felt oddly a little better for a couple hours, and my sinuses cleared up quite a bit (something i haven’t mentioned, but has been no doubt interfering with digestion due to post nasal drip for years, and perhaps spreading the infection to other parts of my gut/body).

So complicated. But have read that niacin is very helpful not only for lowering adrenalin levels, but also for raising good cholesterol, lowering the bad, and lowering elevated triglycerides. Mine were quite high after six months of eating more sugar?but maybe they would’ve been fine had I been taking niacin.

I’m sorry to hear you’re dealing with fibromyalgia and CFS, but good to hear (as odd as it sounds) that it’s “only” been three years. I was doing “okay”, relatively speaking, until about 4-5 years ago. I could walk sometimes a mile every other day, sometimes 2 miles, maybe once a month. But ever since starting the methylation stuff (b12, different types of folates), and also I think I had/have salicylate and possibly other food intolerances/allergiesI went downhill.

I don’t have fibro?at least not officiallly?but have felt like my FEET have it — that’s where I have that acidic like pain, and have found that vitamin E and also krill oil (and anything that helps circulation helps), but like all of us here, I would kill to get off of all these supplements and just be able to eat like everyone else!

A hamburger with all the trimmings, pizza, ravioli, mashed potatoes?!

Thanks again,


  • This reply was modified 9 years, 9 months ago by DannyJ.