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Now, i don’t want to jinx it or anything but i have not had a virus so far this year. Last year i had several and even in between them i felt less well than what i considered to be normal. Early this year i did start to take some new supplements as i had a closer look at my multi-vitamins and minerals and they were a bit short on things that seemed important to me. So i have been taking (sublingual) Zinc and more Vitamin C. Also i am taking Iron as although in the normal range my iron tests always seem to come out “a bit low” so i thought why not top it up to be more average and see if i feel better? My Ferritin was 17 and after an internet search that seems ok, but not high, so i thought it would be ok to take some iron for a while as a short-term booster. Also i have been taking Calcium and Magnesium tablets (50/50 ratio) and since December last year i have been taking B12 and also Vitamin D (which i read yesterday has been shown in a study to help with reducing the number of viruses caught by some school children but more research needs to be done to prove this, as usual –

Have these things helped me or is it just luck that i have not caught anything yet? I do feel a bit different, i hesitate to say “better” as there are so many things going on in my body but i had this feeling of fighting something constantly last year and that feeling has gone. Yes, actually i do feel a little better.

On a vaguely related note i have stopped making Kefir. Actually i chucked it all out in a rebellious fit after new year sometime. Probably a waste but it was just so gross, i have always hated milky stuff and although i did enjoy it most days when i made it with soya milk, i had had enough. I don’t feel any different digestively or otherwise… It may have helped me. I cannot tell.

I have started taking two new vitamins.

(I am no expert on these matters and am just trying to work out what is best to take with the information i can gather, at my own risk, so please do your own research/consult your doctor rather than copying what i am doing!)

I have got some sublingual B12 powder (you put under the tongue) which is meant to be better absorbed than tablets. My multivitamin has some B12 in it already but i am sure i would be deficient if i did not take it as my diet does not include any natural sources as far as i can tell (mushrooms and cheese have a bit?). I know of various pwME who take it and some who get regular injections of it which is meant to be even better than taking it orally. I think there have been studies that it can help with some symptoms of ME but i have not the energy to look that up right now, sorry for shabby posting without proper research evidence! Energy is low at the moment so if anyone has any handy info/links on this to hand, please do comment below!

I am also taking Vitamin D (in the form of D3). This is a bit more risky as it is a fat soluble vitamin. In theory you could take too much as the body may not get rid of any excess – it cannot just be processed and passed out in urine like, for example, any vitamin C that is not absorbed. I am only taking the RDA and seeing as i generally do not go outside or rarely even see the day through the window these days, i think that should be ok. (I read if you are getting vitamin D through sun exposure the body knows when it has made/stored enough so you don’t overdose, just in case you were worried!). There seems to be growing evidence that many of us are vitamin D deficient (i mean the population in general, not just pwME; particularly in northern climates where sun exposure is limited and people are very sun-cautious/covered up even when they are out in it) and that it can play a role in many illnesses (MS, cancers…). My osteopath said that he thought i should consider it and that a doctor friend of his had talked to him about it and suggested that the risk of cancer through sun exposure (not burning, just being exposed little and often) was much less than through vitamin D deficiency and that people needed to change their focus and attitudes to the sun. He also said that there seemed to be emerging evidence of deficiency having a role in many illnesses.

here is one article about it:

here is a long factsheet that is a bit scientifically written but that highlights some useful things: It mentions bone health for people who are inactive, the likely need for supplementation in people who are housebound and who are vegetarian (er, me on all 3 counts!), issues of toxicity and other possible health benefits and illnesses that can be affected by a lack of vitamin D. My grandmother has had osteoporosis since she was relatively young so i am also aware it may be something i am prone to, though i do not know if it runs strongly in families or not. Apparently when you don’t jump up and down much or walk strongly about, that lack of impact on the bones can lead to them being thinner. That jarring action leads them to build themselves up and be stronger for that kind of action in the future. As i creep/shuffle about gently in general i think i am not getting that impact.

I will take it all winter and maybe not so much in the summer if i can sit outside more regularly as i tried to do this year. I read somewhere (sorry, again i know not where – must try to be more organised!) that just ten – twenty minutes sitting outside in gentle sunshine with some skin exposed (face and arms or legs) is enough for your daily dose, which sounds easy, but in this country (the UK) the days when this is possible even during summer not as frequent as you would think. I tried to seize the moment as much as possible this summer and did grab some rays even when the day was generally cloudy due to my flexibility of being at home all day, but still did not manage more than one in three days during the height of summer. For people who work it is even harder i should think! Also if you have darker skin the production of vitamin D is slower than for paler skins, so dark-skinned people living in the northern hemisphere are even more likely to be deficient.

Obviously the best thing regarding all supplements would be to have thorough blood tests done to see which ones i really am deficient in, but as this seems to be unavailable on the NHS for most vitamins/minerals, we are left guessing. As my diet has been more restricted this year and my digestion has also not been functioning well before this due to very bad IBS symptoms i think i do need to take supplements. If i have no major deficiencies it is one less thing preventing my body from working as well as it could…

Many apologies for bad blogging – for not backing up my assertions with lots of links to research – i just wanted to get some blogging done but am not up to being on the computer long enough to do a proper job…

Well i have been meaning to update on this for ages, so to take my mind of the DLA dramas i thought i would do it now…

I have been taking D-Ribose for months now (see previous posts), and although i was not sure to begin with i am quite sure now that it is having a small positive effect 😉 I did not take it for a couple of days recently as was waiting for a new supply and although those days were fine i had a few days afterwards where my thighs were so heavy it was quite a shock (I also felt very sleepy and could have slept all day and night, which was not how i usually am). Since taking the D-Ribose i have had a lot less of that real heaviness in my legs, where i have felt like manually lifting each leg in turn to go up a step and they feel like they are filled with lead. It is very rarely that bad now. I also think that although they do ache quite badly after i use the muscles, or have a stressful time where i must be tensing them without realising, it does not last as long. The recovery is quicker. In general they feel lighter. I feel less like i am wading through water perhaps.

I do not feel any difference after taking it, like a buzz of extra energy or anything, and i am still unsure if i actually have any more energy – i have not seen any real improvement in how far i can walk, what i can do in a day etc. although this is hard to measure with natural fluctuations, there is certainly no dramatic difference. I still have a lot of symptoms of muscular pain in back, or anywhere i use the muscles more than usual, bad tension headaches and neck pain and tenderness, lightheadedness, dizziness, temperature fluctuations, sensory overload, need to lie down/nap at usually twice each day etc etc etc no change in those areas…

The things that has been a LOT better are my mood and my skin (particularly my face). I cannot really explain that and am not sure why. I have also been taking other supplements: Enzymatic Therapy Energy Revitalisation System & B vitamins, which is a powder (and tablets for b vits) with many different things in, as well as CoQ10 & L-carnetine and also i started taking all this stuff in the spring, just as i started being able to sit outside in the sun more, which i think really helped my skin as it improved almost immediately. My face was very dry and was irritated every time it got wet (eg when washing hair) and it was literally flaking off and started having patches on it that looked a bit like eczema or something, but it is so much better these days. It could be the vitamins or the sunshine or a combination of factors… who knows! I have reduced the vitamins to half a scoop each day and taking the tablets every other day, mainly for cost reasons and have not seen any effect, but i still take the standard dose of D-Ribose: 5mg twice a day.

I also take Vertase Omega369 tablets, but have taken them for years so not really worth mentioning!

So life is sometimes more pleasant but has not opened up particularly… i think the only way to see what impact the D-ribose is having is to stop it for a while and see the difference… which i will do at some point, but i am not sure when i want to risk feeling worse – there is never a good time to do that is there!?

ME/CFS Awareness

ME/CFS Awareness


December 2020