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Dear Red Cabbage Heads,
Disclaimer - I am not a Dr, I have no medical training, and this is all my own research and subsequent opinion.
Over on Notes I promised a little while ago to discuss my supplement intake. This is going to sound terribly boring for most of you. Apologies. For those of you with ME/CFS etc it might be a little helpful. And I’m not going to got into a lot of the medical chemistry as that’s easy enough for Google to tell you. So after R’s medical emergency I dove deeper into the mechanisms of the body, beyond ME/CFS, and I reckon I c/should now become a biochemist. I am now rather well versed, more than the average GP I feel, or at least most of those I meet.
I must come over to most GPs as a know it all. I tend to research everything, as my so says, they are called General Practitioners for a reason, not specialists. The last consultation I had with one about my bloods at my practise had her admitting to me the a) she didn’t know HOW statins worked or that they interfered with many processes in the liver including production of CoQ10, b) she didn’t know that I had ME/CFS, c) she didn’t know that most if not all people with ME/CFS have issues with CoQ10 and the production of ATP (which CoQ10 contributes to) and that decreasing CoQ10 would very much potentially make my ME/CFS worse. d) when looking at my liver results, one very slightly and insignificant (admitted there and then by the Dr but still scheduled an ultrasound) raised result, i) that ME/CFS is often caused by Glandular Fever (the Epstein Barr virus) and ii) that virus can hide behind certain proteins in the blood and iii) reactivate periodically and affect the liver. All in one 15 min consultation. I refused the statins.
Now R’s problem meant I needed to do more research as they also wanted him on statins. So I deep dived deeper. It’s quite scary what statins do, and I have waffled on to quite a few people about how I feel they are poison and will only shorten life and make people very susceptible to dementia. But this isn’t a long post about statins, but my advise, do your own research and if I were you, refuse them.
So anyway I take a LONG, LONG list of supplements. I rattle when I walk. I’ve spent years on supplements and years off them, especially in the early years of my ME/CFS. It cost a lot - I used the supplements recommended by Dr Myhill and it was £100+ per month that, at the time, I couldn’t afford. I hadn’t manage to circumnavigate the benefits system at that point and, to be fair, I was better then than I am now.
I take 4 sets of supplements - 1 for my MECFS, 1 for heart health, 1 for general health, and 1 for sleep issues. Now do you NEED nutritional supplements in general?
“No. But nor do you need indoor plumbing and electricity … why live without them.” Bowden & Sinatra
The supplements for my MECFS are … D-ribose - to help make ATP (basically energy) - the one essential sugar for life, provides scaffolding for ATP - 5g L-carnitine - helps recycle ATP rather than build it from scratch by transporting fat into the mitochondria - 1200mg NMN - helps with NAD+, part of making up ATP - 500mg Ubiquinol - a more bioavailable form of CoQ10 - the spark of life, literally recharges the mitochondria to help produce ATP - 100mg Glutathione complex - for mitochondrial health, a free radical scavenger - 200mg High dose Omega 3 - for lots of stuff - 1000mg Vit C - the most powerful antioxidant - 250mg Lions Mane extract - for the awful brain fog the MECFS gives me - 4000mg B12 - Genetically I struggle to get B12 from food anyway so take extra - 1000ug (sorry no mu button on my iPad) for general Heart Health are … D-ribose Turmeric (curcumin) - anti inflammatory, antioxidant, and anti thrombotic - 58mg Vit C Garlic - lipid lowering, antioxidant, anti thrombotic, anti blood coagulation, anti hypertensive, antioxidant, anti microbial, antiviral, anti parasitic, and obviously anti vampiric - 600mg Trans-resveratrol - antioxidant, lowers inflammation, prevents DNA damage, lowers blood pressure, neuroprotective, anti aging - 250mg Olive leaf extract - lowers blood pressure, anti microbial , supports the immune system - 500-1000mg High dose Omega 3 L-carnitine Magnesium complex - the great relaxer - co factor in ATP production D3 + K2 - D is a superstar, and K2 prohibits calcium build up in arteries - 4000ui + 100ug for General Health are … Iron - 2 x a week - I don’t really eat red meat so supplement iron a little - 14mg D3 + K2 - I don’t make Vit D either so … Milk thistle extract - liver support due to EBV present in my system - 100mg Turmeric B12 Iodine - for thyroid health- 293mcg for Sleep Issues … Magnesium complex - 384mg Ashwagandha - calming effect - 250mg We also eat 70% dark chocolate as studies show it helps with heart health - and so why not.
As you can see there are big overlaps. All in all I take just under £100 of supplements every month, and 20+ tablets a day. R takes less as he doesn’t need to take ones purely for MECFS, liver support, or for sleep. The ubiquinol CoQ10 is the most expensive, but that cost could be lowered significantly by taking ubiquinine CoQ10 instead.
There was a point recently when my throat refused to take tablets. It was very frustrating. But I felt the lack in my body. And I came off the Lions Mane mid June as I wasn’t sure it was working. IT WAS! So I know they are working a bit at least. Nothing is ever going to cure my ME/CFS, but I feel less poisoned at the moment. My insides feel healthier although my functional capacity is basically unchanged.
If anyone is interested in where I source the better quality but affordable supplements in the UK message me.
A lot of my information is from Dr Myhill, an ME/CFS specialist who can be found on the internet, and the book The Great Cholesterol Myth by Bowden and Sinatra, as well as a lot of internet research reading peer reviewed papers etc. I haven’t kept notes of all I’ve read, as this information is really just for me and R.
Well I hope that wasn’t too dry for you. It’s certainly been useful for me to write it all down instead of keeping it in my head.
So, that’s all folks, thank you for your understanding in advance: til next time…. Tx
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Thanks for sharing that. I am always interested in what others with ME/CFS take. Am aware that different things work for different people, but definitely will look to add one or two of your suggestions. After 20 plus years with ME/CFS am still looking for things to help...
I do so love being a pirate. Love, Rrrrrrrrrr.