That's another week done and my second month with it. Whilst I'm very aware of how long it's been since the treatment, it also seems like yesterday and I wonder where the time went.
I've had a few people asking what my 'cocktail of vitamins and minerals are, so earlier this week I typed it up properly and posted it on http://shift.ms but I'm pinching them back to post here too as the audience here is truly global - over 8,500 views now WOW
– Biotin – 20,000 UI a day (Costco 5,000 ui tablets)
– Vitamin D3 8,000 ui a day (Costco 2,000 ui gel caps – they’re tiny)
– Calcium and Magnesium (helps absorb the vitamin D) – (Holland and Barrett – Vitamin D3 10μg (400 I.U.) 200% Calcium 1,000mg 125% Magnesium 500mg 133%)
- Evening primrose (all women should take this otherwise we are all homicidal monsters waiting to stike at 'that' time )
- Cod liver Oil (Tesco’s I think 1,000mg – 1 or 2 a day)
- Omega 3 oil (Boots chemist – 1,000mg 1 a day)
- High strength 1 day multi vitamins (Holland & Barrett Timed Release Super One 100 Caplets)
- Immune System Booster (From pretty much everywhere – Vitabiotics Immunace Extra Protection)
- Collagen – for my joints and skin (Pure Gold collagen – Boots / Costco also contains more biotin and other good stuff)
That’s my personal blend – please note I’m not a medical professional – I’m a telecoms project manager and it’s a concoction I put together to mitigate the risk of the symptoms reported during and after Lemtrada infusions xxx
Some people have said their health care team disagree with some of the choices, recommend not to support your immune system before during or after treatment, and that's fine.
I think all medical professionals have their own opinion on the matter, after all opinions are like arseholes …. we’ve all got one
This treatment is so new that everyone has a different idea about the treatment should be complemented. Some say you’re killing parts of your immune system for a reason don’t do anything to ‘help’ it, some say do what you can to promote the growth of a new ‘healthy’ immune system. Whilst it’s approved and in use, it’s only the treatment that has been effectively studied so many other factors dictate how people will react to any kind of medications
- disease status
- disability level
- activity level
- Emotional and mental place you're starting from.
I openly admit I’m my own lab rat and my blog is my way of publically recording what happens / reminds me in case MS brain comes back and it keeps me honest in real time with an audience looking on. My neurology team all have access to it at Basingstoke and Southampton as does the MS nursing team in Basingstoke and Southampton nobody has come back at any point and said don’t do that (apart from the nurse who had a fit because I was drinking wine in the evening during my infusion week
There doesn’t seem to be any hard and fast rules being applied generically across the board, everyone is different. What’s worked for me might not work for others or be approved of by others but since I’m doing so well it would be rude not to share xx
I'm pleased to report that today's nurse who took my bloods was a 'One Stab Wonder' which was a vast improvement on last months 4 attempts. We have to have monthly bloods every month for 5 years - that's 60 times your vein is going to be jabbed - make sure they do it first time every time so you don't end up with collapsed veins that they can't get blood from in your arms and hands - my mum late in her cancer treatment and follow up ended up having blood taken from her feet and all sorts of other places, she said it was all incredibly painful :-(.
Results are supposed to be back on Tuesday, hopefully the Lymphocytes are up and Netrophils are down. This month has certainly been a little more emotionally stable for me than the previous one. I've certainly been much better with a stable diet and regular meals, less wine, so I have high hopes
Take care of yourselves ladies and gentlemen, use every weapon you can to fight this awful disease, trust your instincts and yourself ..... make up your own cocktail customised to your own needs support your body and the treatment and avoid the germies and plague monsters xxx
It's been over 7 years since I started on my Lemtrada journey. It's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Friday, 17 July 2015
Week 8 complete - 2nd set of bloods taken
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