I’ve thought a few times it might be interesting or of interest to share what suppliments I take.
I’ve recently started a couple of new suppliments after recommendation by another CFS sufferer. Although it’s still early days and I am sceptical, when I look back over the time I have been taking this it does seem to coincide with much better cogntive function.
However! I am blogging with a note of caution because I am still not convinced.
Also one of the things that drove me mad when I was first diagnosed was surfing web sites and finding sufferers recommending wonder suppliments or treatments – but who were still very incapacitated by this illness.
I used to think – what use it that? How wonderful is product x or suppliment y when this person still is unable to do “normal” things?
I kind of understand now that just like the bad or better days you have with CFS/ME are often just tiny measures apart – I think so is the difference a suppliment might make.
I settled on a routine dose of immune specific multi-vitamin, zinc, magnesium, vitamin C and B12 a few months after my diagnosis. I did quite a bit of reading and stopped taking others which I decided not to pursue for now. It’s stacks up to quite a little monthly bill just for suppliments and it’s a lot of tablets to take. I found Dr Anne MacIntyre’s book “M.E.: Chronic Fatigue Syndrome – A Practical Guide” very helpful deciding on suppliments.
(Before you say – I know I should be trying to get these nutrients through my food but food and me have a complex relationship – so you just have to accept that for now it’s tablets for me).
I used to know why I took each of these – forgive me as today it escapes my mind! I know my mulit-vitamin (Vitabiotics Immunance) has lots of brill things for my immune system. Low levels of B12 in the body can cause fatigue so extra doesn’t hurt at all. Vit C is good for immune system too I think. And I get them mixed up but I think Zinc is good to help you absorb nutrients properly and magensium is good for nausea and erm, other things. Somewhere I have my dosages written down if anyone is interested.
I went through a phase of thinking that they didn’t seem to be making much difference – I was still very ill. So I stopped taking them.
Within a couple of weeks I had picked up a viral infection even though I had not left the house. No-one else I came into contact with even noticed a viral infection in themselves – yet it left me shattered and very ill for over two months.
It was the first time I had anything like that since taking the suppliments. Needless to say now I take them every day again!
So it seems to me at least that they are useful. They might not make me well enough to zip around the house or go out on my own – but they certainly have a role to play in keeping my body as well as possible – using my energy to fight CFS/ME and not other infections. It might be tiny compared to what I would have demanded before CFS/ME – but small mercies are welcome now.
I’ve been taking a product called AllicinMax (in the UK) or Allimax (in the rest of the world) which is 100% allicin extracted in a special process from garlic. Allicin is the active part of garlic and when taken as garlic or garlic tablets it can be destroyed in the gut very easily. The makers of AllicinMax/Allimax say that their allicin is stable and so you get the full benefits of it.
Briefly, allicin is supposed to be like a natural antibiotic except that it kills bacteria and viruses. Each tablet contains 180mg of allicin (equalivalent to 30 bulbs of garlic!). The theory is that CFS/ME has some basis in chronic infection. That or bodies are riddled with chronic infection which are not killed by a routine course of anti-biotics. The Marshall and Wheldon protocols are also based on treating chronic infection. I have even heard the idea of “stealth infection” deep in our cells that normal medication cannot “see”.
Whether this is all true or not I do now know. But I read on a forum about a lady who had been trying it and found (by accident really) that it seemed to be making her better – slowly but steadily better.
I don’t really know why I decided to try it. But it seemed not to expensive to give it a little go, it was simple and I didn’t need to believe in it – if it works it would just do it’s stuff.
I started taking one tablet a day in mid August 2007. I have gradually increased the dose and am now up to 5 tablets a day.
I was not convinced it was having any effect. I took 1, then 2 tablets through my viral infection and it didn’t seem to help with that. So I was (am?) sceptical.
But looking back to August I see that now my brain fog is not as bad as it was. I am able to concentrate more and get mixed up with words less. I still suffer with bad brain fog but for less time if that makes sense.
Going out this week and feeling not wiped out completely – is making me wonder if the AllicinMax is indeed helping. The lady who reported an improvement first said she started with better concentration and then slowly improved physically too. Maybe my little extra battery space is due to this? Hmmm …
I’m not telling everyone to rush out and try it because I honestly don’t know if it worth it. It could be just time and/or rest and/or pacing and/or one of those things that I have found small improvements.
If you do decide you are interested read up some more – a lot of people on my forum reported what are called Herx reactions. So as the Allimax kills the bacteria you get a “die off” which is I suppose a bit toxic in your body. So it can cause headaches and fatigue and basically make you feel worse for a little bit. When the bad stuff stops them you know you can look to increase the dose. This is why you don’t just start with a high dose of this suppliment – because the amount of die off would be too toxic for our CFS/ME bodies to handle. I have increased my dose every two to three weeks – now increasing monthly as the dose gets bigger. I personally haven’t noticed any such reactions but my symptoms are variable anyway so I might just be ignorant!
Oh very important – if you are in the UK make sure you buy AllicinMax (available from Boots and QuickVit) and not Allimax. Allimax is a disupted name under copyright and the Allimax being sold in the UK do not contain pure allicin. The company have renamed the pure allicin tablets to AllicinMax in the UK. Everywhere else it remains as Allimix, but not in the UK.
Here’s a link to a web site that the lady who first told us on the forum about AllicinMax has set up www.cfs-allicin.com It says a bit more than I have here and the community there would be a good place to ask questions about AllicinMax, the research and so forth.
Well anyway – so I have been on AllicinMax for around 3 months. A week ago I also started taking N-Acetyl Cystein (NAC) 600mg an anti-oxidant to help clear up after the allicin.
I also started taking Astragalus again which is supposed to be good for immune system. I took this last summer when I was diagnosed with Glandular Fever and my progress was better then. Whether it was the astragulus or because I am not more ill than then … I do not know!
I’m sorry this is a confusing post (see I said my brain fog was better not cured!). I wanted to share what seems to be helping me but don’t want to sound like one of those people who says “this WILL make you feel better!!” because I really don’t know. I’m not claiming a miracle or even a cure. Just telling you what’s going on for me.