Vitamin C in the treatment of MDS

[MDSUK]

Hi All,
Here's a link to a really interesting article on our website about Vitamin C and how it has been scientifically proven to affect blood cell production. In this article Dr Timothy Chevassut, Consultant Haematologist at the Royal Sussex County Hospital, Brighton, looks at the benefits of Vitamin C in the treatment of MDS.

https://mdspatientsupport.org.uk/vitami ... -properly/

Dr Checassut spoke recently at our July 2022 Bournemouth regional meeting on this topic, so please think about signing up to your local meeting, they have great speakers and offer you an opportunity to ask questions of specialists in an informal setting.

[Devjon]

Thanks for posting that, I purchased a few tubes of Effervescent Vitamin C tablets from Waitrose " Thrive " is the brand and cost about £1.40 for 20 tablets ( there was a similar product adjacent to the Waitrose version, they were £5.50 for 20 tablets )
So, 30 days later and I've been taking one a day alongside my Circumin and Black Pepper extract from Healthspan.

No adverse effects and I initially did seem to have more energy, especially on the hills. I then got a bit overambitious and ran a 10K in the heat last week which really wiped me out. In hindsight I think that a lot of the benefit was in me being properly hydrated, dissolving the tablets in a pint of water every morning with a dash of squash has got me into the routine of drinking water more regularly throughout the day. I don't often feel thirsty so its important for me to remember to drink.

Following my 10K wobble I crawled into bed for a couple of hours only emerging when my wife Ros reminded me that the local brewery was having an open day, complete with music and food stalls. We walked to the beer festival and had a wonderful afternoon, the music was a few local acts, some very talented indeed, and the local whole foods shop had a stall which we visited for a few healthy snacks. I must have been very dehydrated as I managed to drink four pints of rather excellent ale without needing to pee.

So onwards and upwards, I'll continue the regime and report back any further developments in a months time.

[RUSE7]

Keep hydrated Kevin! I can't imagine dehydration does our poor struggling blood cells any good at all. I'm not surprised you had to hit the hay for a few hours after running in that heat. I'm glad that a few pints could lure you out though

One thing I'm not clear about in that article......The Dr talks about TET2 mutations. I am wondering if only people with a mutation on the TET2 gene will benefit from taking the vitamin C, or whether we will all benefit. Do you have a mutation on that gene? I know you were at the Bournemouth meeting when Dr Checassut spoke about it last month. Do you recall him saying anything specifically about that?


Cheers (literally....at least 4 pints haha)
Ronnie

[Devjon]

Keep hydrated Kevin! I can't imagine dehydration does our poor struggling blood cells any good at all. I'm not surprised you had to hit the hay for a few hours after running in that heat. I'm glad that a few pints could lure you out though

One thing I'm not clear about in that article......The Dr talks about TET2 mutations. I am wondering if only people with a mutation on the TET2 gene will benefit from taking the vitamin C, or whether we will all benefit. Do you have a mutation on that gene? I know you were at the Bournemouth meeting when Dr Checassut spoke about it last month. Do you recall him saying anything specifically about that?


Cheers (literally....at least 4 pints haha)
Ronnie

Hi Ronnie,

I'm not sure about the TET2 mutation, I'm seeing Sally Killick at the RBH on 1st September and I will ask her then ( Though it is strange that I still don't know my blood type and it's not on my computer records, plus a hernia op many years ago at the Cottage Hospital in Wimborne doesn't show either )
I'm cautiously optimistic about my energy levels, I'm a natural sceptic and a great believer in scientific method and I'm very much aware of placebo effect. Nevertheless I've recently noticed an apparent improvement in leg strength in my quads, they're the first muscle group to be affected when I'm running and it's especially noticeable on hills. A good way of describing it is visualising my quads as upside down milk bottles with the neck of the bottle just above my knees and the milk representing my muscle glycogen reserves. Pre MDS I used to run lots of hill sessions in training, I'd push hard on the hill and by the time I reached the top my quads would be burning, the " milk bottles " would be empty and I'd be staggering. I'd turn round and jog back down to the bottom of the hill by which time they'd have filled back up again ready for the next effort. Post MDS the bottles only got partially refilled and very very slowly. Just recently I've been noticing a greater and more rapid recovery in muscle glycogen as I run. Fingers crossed that it continues to improve. I know I'll never have the same physical endurance that I once had, but I've still got the mental determination and resilience to deal with fatigue and that really does help. ( I once competed in a race where I ran a little over 141 miles non stop around a running track, that was extremely challenging both physically and psychologically )

I'll report back after I've spoken with Dr Killick

Cheers! I'll raise a glass next time I'm in the Pub

[RUSE7]

141 miles.......around a track.......I cannot compute! .......That's around 565 laps........ I'm blown away. That requires such mental discipline. Amazing! How long did that take? It's a good indication that you know what "normal" was for you pre-MDS though and that you can gauge how you are feeling now (on Vitamin C) compared to a couple of months ago (pre Vitamin C) .

Let us know what Sally Killick says next month. I've got my next check up at the end of September so I'll ask the question as well. Great idea.

Cheers
Ronnie

[Devjon]

141 miles.......around a track.......I cannot compute! .......That's around 565 laps........ I'm blown away. That requires such mental discipline. Amazing! How long did that take? It's a good indication that you know what "normal" was for you pre-MDS though and that you can gauge how you are feeling now (on Vitamin C) compared to a couple of months ago (pre Vitamin C) .

Let us know what Sally Killick says next month. I've got my next check up at the end of September so I'll ask the question as well. Great idea.

Cheers
Ronnie

Hey! 567 Laps actually. I ran 141 miles and 401 yards, and those 401 yards were hard earned
The track was 1/4 mile cinder, it hadn't at that time been converted to " Tartan " ( Which although initially more forgiving underfoot has it's own drawbacks as the distance increases ) As for time, it was a 24 Hour track race. My first 24hr coincided with the first " Live Aid " concert. The organisers piped the concert through the track side Tannoy system until early evening where it was switched off in consideration of the local residents. Quite surreal, and a fascinating mix of competitors, I of course being the only sensible one among them ( I recall talking to a Dutch lady competitor who would go off the track every few hours and rub something into her legs from a large bottle. I thought it must be some sort of liniment, but when I enquired what it was, she told me that it was horses urine! It was many years later that I read about oestrogen being extracted form the urine of pregnant mares )

[RUSE7]

Things have changed so much since 1985....LiveAid would be pay for view now, you'd all have your EarPods in listening to your motivational tracks to keep you going, the horse urine lady would be disqualified for doping (I just have to say......WHAT.....that's so crazy!!!)......An amazing achievement though Kevin, running is clearly in your blood. Glad you can still get a few miles in even with MDS and glad that the Vitamin C is making that a bit easier for you. Keep on running!!!!
Ronnie

[Devjon]

Update:
As promised, I'm back with an update about my new regime ( daily 1000mg Vitamin C effervescent tablet + Turmeric extract )
All is well, its 60 days in, and I'm experiencing no adverse affects. My energy levels are still pretty good, I've been doing more running and walking and have managed a ten mile run. A couple of "wobbly" days when I've overdone things, but generally ok.
A couple of weeks ago I had my 5th Covid jab, another Pfizer, and no adverse effects. I've had a cold, but with a 5 year old granddaughter who's back at school that's almost certainly the source.
I saw Dr Killick at the beginning of the month, my Bloods were good with a five point increase in Hg levels. I never got to ask about the TET2 issue as I was chatting about her retirement and it slipped my mind. Sally has looked after me since my diagnosis in 2013, she has been wonderful, I always felt much better after my visits to see her, and left with a smile on my face and a spring in my step. I wish her all the best in her much deserved retirement and know she'll be sorely missed by all her colleagues and patients.
I've been referred to Doctor Bruce at Poole Hospital, Dr Killick spoke highly of him and It will make my journey easier as it's a lot easier for me to get to than the RBH.
I'll update again in a month or so.

Kevin

[RUSE7]

It seems that loosing Dr Killick is a national incident! I can't tell you how many times people have mentioned it recently and said what a huge loss it would be. Sorry you're being re-homed, but as you say, Poole is a lot easier to get to, so silver linings and all that.

I caught up with Dr Gandhi at Kings this morning and he said that research indicated that high dosages of Vitamin C to improve normal DNA methylation would be only benefit those of us who are low risk and have a TET2 mutation. I can't remember if you said you had a mutation on that gene or not? I don't, so not much point me keeping going with Vit C from an MDS perspective, but I will continue to take it as cold and flu season is coming so it can't hurt. I also have months and months of supply left, so no point wasting it.


All the best, Ronnie