An MS diet: science; art or unwelcome distraction?

Standard

Of the many aspects of my life that have changed since my MS diagnosis, my “new” MS diet seems to be the one that I’ve discussed the most.  Everyone can relate to the concept of a new diet and is interested by it – and it’s a good MS-related conversation piece that doesn’t necessitate delving  into the gory details of more personal symptoms and strife. And the diet is, essentially, no more than a “healthy” one that anyone could (or probably should) consider because of its long term health benefits.

The diet is predicated largely on the avoidance of all saturated fats. This doesn’t require the onerous reading of labels that I thought it might – it basically necessitates avoiding red meat, dairy and the large majority of all processed (aka junk!) foods. The diet isn’t necessarily vegetarian – white fish and skinned white meat are still ok – but there is the recommendation to avoid all dairy (even in low fat alternatives). A largely common sense approach seems to work pretty well – but occasionally I’m surprised at the ‘hidden’ fats in some foods (which I’ve now added to my list to avoid): avocados; olives; egg-yokes; walnuts; and some vegetarian meat-substitutes to name but a few.

The fact that it’s a ‘healthy’ diet (at least, compared to the average diet in 2016 UK) is not really in question – of more pertinence to me are: is it actually helping me keep my MS under control? and are the benefits, which do need to be carefully weighed up against some of the ‘downsides’, actually worth it?

_____________________________________________________________________________

The concept of an MS diet really stems from the work of Professor Swank, whose long term study of MS patients over a ~30 year period showed remarkable health benefits associated with adopting a diet low (in fact, very low) in saturated fats. The evidence he presented seems almost incredible – at a time when there were few, if any, alternative approaches to tackling MS. Today, even though there are now numerous disease modifying drugs available to patients, his dietary recommendations are still very relevant as they do not suffer from the (potentially severe) side effects of the pharmaceutical equivalents; and are of low (arguably zero) financial cost.

The diet is, without doubt, healthy and, in MS-terms, its supporters are almost religious their faith in it. Message boards are alive with patients convinced that the diet has nullified (“cured”) their MS and they highlight numerous scientific papers which support links between MS progression and patient behaviour/diet. However, – and it’s a big however – the mainstream medical community (read, in the UK, “official NHS advice”) continues to shy away from a direct recommendation of the diet. The NHS’s, much more softly-worded, advice is to pursue a “mediterranean-style” diet where possible (plus Vitamin D when required). The powers-that-be appear unconvinced of the MS-healing properties of Swank’s diet. Given that the diet is low cost (in fact, financially and physically the ‘cost’ might actually be negative!) this might initially seem to be unduly reticent…. but having maintained the MS diet with strict discipline for ~18 months now, I do see one big downside, one which I feel is understated: the “strict discipline” that I mention.  I have found that the diet is onerous when eating out, eating with friends or going on holiday. And the diet’s instructions are clear: to get maximum benefit it has to be followed at all times: any ‘breaks’ set you back a disproportionate amount of time, so it needs an “all or nothing” approach. I can see why the NHS guidelines retreat from afflicting MS patients with additional pressures and stress – another list of things they obsessively have to do.

In fact, Swank’s original MS diet has since been refined and modified by contemporary ‘experts’ (George Jelinek probably being the highest profile, or, at least, the most visible on the internet). Focus has moved away from exacting measurements (‘science’) to easier-to-follow generic advice (‘art’) – but the core tenets remain the same: reduce ‘bad’ fats; increase ‘good’ fats; and supplement with Vitamin D. Avoiding dairy products is an additional, but probably a secondary, recommendation.  To date, I have been following the ‘art’ approach but, of late, I’ve been feeling the need for this to be bolstered by something more… palpable (statistical or concrete) – both in terms of the diet, and its impact.

I refer to an early scene from the TV series, “Breaking Bad”. If you’re not familiar with it, a chemistry teacher, Walter, ends up in cahoots with a small-time local drug dealer, Gretchen, to illicitly manufacture (or ‘cook’) the drug, crystal meths. Their early exchanges somehow paraphrase my thoughts above, regards the cold, calculating power of scientific accuracy:

Gretchen: This ain’t chemistry – this is art. Cooking is art. And the drug I cook is the bomb, so don’t be telling me.

Walter: The shit you cook is shit. I saw your set-up. Ridiculous. You and I will not make garbage. We will produce a chemically pure and stable product that performs as advertised

Walter: I don’t know. Just…doesn’t it seem like…something’s missing?

Gretchen: What about the soul?

Walter: The soul? There’s nothing but chemistry here.

Using exactly calculated chemical measurements Walter then goes on to create the purest (best) crystal meths that Gretchen has ever known.

It’s not “magic”; it is chemistry, with known reactions between specific quantities of known chemicals. Art might be the finessing of the output, but the real-deal is in numbers. I was increasingly aware that I had no hold on what my ‘numbers’ actually were.

________________________________________________________________________________

As I see it, there were two main stumbling blocks as I first considered adopting  this ‘new’ diet as recommended by a faceless expert:

Firstly, although our interactions and dependencies with what we eat and drink are well understood – right down to the molecular level – we are all unique individuals; and the mechanisms by which we break down our foods, and how they impact upon us, are different. They are moulded by our behaviours and our environments, as well as our physiologies and physiques. The most extreme examples of these are specific food allergies – but, even these are not black and white, there’s a sliding scale of mild intolerances and reactions to specific fats, enzymes or proteins etc. A ‘generic’ diet that stipulates exact measurements of certain food types has not, by definition, been individually tailored. In my individual case, the biggest issue I found was in recalibrating  recommendations to account for the large number of calories that my cycling miles necessitate. In the literature, and on the web, there is surprising little advice as to how doubling your daily calorie needs should impact advice upon the constituent parts of your diet – most pertinently in the case of the MS diet, the levels of saturated, versus ‘other’, fats that you consume. If there is a recommendation to limit your daily saturated fat intake to <30 grams, I assume that this figure becomes <60 if you calorie intake rises from 2,500 to 5,000? By contrast, do I correctly assume that the recommended Vitamin D supplementation is independent of calorie intake?

And secondly, the “consumer” – e.g. me! – has little visibility of what’s going on inside their own bodies. Chocolate tastes nice. And so do burgers. We can see no evidence that these are bad for us as we gobble them down – we can only take the word of scientific advice from people that know more than us. People that have done “analysis” and “science”; people that have looked at “statistics” and “data”; and who have used computers and micro-scopes. Our bodies are “black-boxes” – and because my primary reason for adopting an MS diet are not aesthetic (not an issue with losing weight; skin tone; or brightness of eyes etc) it’s hard to work out whether the MS diet is doing what it’s meant to, or is having any impact at all. The diet represents a lot to be giving up based on a faith in the advice of someone you’ve never met.

__________________________________________________________________________

In “The Martian” (the film, if you’re me; a book, if you’re more high-brow), scientist Mark Watney is stranded, alone, on the planet Mars. The situation looks bleak. But Mr Watney is a resourceful fella. The character, played by Matt Damon, takes a look at what scant resources he does have available – principally a few seeds and some bags of excrement (!) – stares at his camera and announces:

“In the face of overwhelming odds, I’m left with only one option… I’m gonna have to science the shit out of this.”

I’ve decided to take his approach. Just – again, as it’s me – a more low-brow alternative to cultivating a Martian potato farm.

______________________________________________________________________________

My assessment

For 2 days (and 2 days only!) I wrote down everything I ate and drank. Using ingredient listings, I added  up totals for my intake of unsaturated fats, saturated fats and calories.  I chose 2 days when I was not cycling – this is unusual for me as I ride my bike 5 or 6 days a week – but I thought it would be easier to first tackle my “base-line” days without the added complications of comparing the impact of various ride durations, intensities and speeds (and so on!)

I was surprised how low my calorie intakes were. Given the volume of food I ate, I ‘only’ consumed 2,600 and 2,800 calories on the 2 days (which is slightly above the recommended ‘average’). To my naive surprise, much of the bulky food I was eating had little or no calorific – vegetables, pasta, a very large salad and a stir-fry recorded negligible amounts.

Swank recommended less than 20 grams of saturated fat a day (note that Jelinek adjusts this to nearer 30 as Swank omitted the cumulative impact of saturated fats in ‘good’ foods (e.g. even a slice of wholewheat bread or glass of soya milk contains some saturated fats that add up over a day)). My average figures were 17g of saturated fat and 42g of unsaturated fat (for which Swank gives no recommended figure). Note though that my figures exclude the ~5 tablespoonfuls of linseed oil that I added, as recommended by both Swank and Jelinek – these (surprisingly to me) contained an additional 5.5g of saturated fat, and 41g of unsaturated: e.g. an additional ~33% and ~100% of my total daily amounts.

Given that I’m also taking daily Vitamin D supplements, and my daily diet included 8 portions of fresh fruit or veg, I’m now confident that I’m doing what is required. Or, at least, I’m meeting the requirements that I’ve set for myself.

But, what of the impact? The impact upon my MS is nigh on impossible to measure.

Last year, my MS was deteriorating like a runaway train. New symptoms were emerging every few weeks; and I was accelerated onto a dose of chemotherapy as a result. This year, although I’ve struggled with some long periods of poor health and still have my ‘residual symptoms’, my MS has felt much more in check. This, I’m sure, will not have been due to a change in diet – more likely, the treatment I received (or just the passage of time…?).

Luckily though, for the purposes of my experiment, over the last few years I have had more blood tests than your average Lance Armstrong. This was largely because of the 5-6 years of MS symptoms that I suffered pre-diagnosis, as doctor after doctor puzzled over my symptoms and ordered blood test after blood test in order to try and work out what was wrong with me. The result is that I’ve got a steady record over half a decade of my cholesterol scores (HDL being ‘good’; LDL being ‘bad’) – and, most tellingly, I had my bloods done just before I was diagnosed, and, again, last week, 18mths of dieting later.

Pre-diet, both my HDL and LDL can be seen as being pretty steady. The recommendation is for your (good) HDL to be above 1 – my average reading was 0.85, with only one reading above 1 (e.g. it was a bit low).  The advice on (bad) LDL is to be less than 3 – my average reading was 3.3, however, this was skewed by a one-off reading of 3.5. All my other readings were under 3 (e.g. pretty reasonable).

In summary, my cholesterol readings were certainly not too unhealthy, but there was scope for ‘improvement’.

Last week, a year and a half of dieting on very low saturated fats, my HDL was 1.2 (the highest reading I’ve ever had); and my LDL was 3.  Jumping to a conclusion, my ‘new’ diet would seem to have bolstered my HDL (good), but to have had little impact on my (bad) LDL (which is now actually the 2nd highest its ever been).

So what?

Apologies to any reader who has persevered this far: his blog has been pretty statistical, and therefore a bit boring (no doubt) for others to read.

However, for me, it has been interesting to research, and then to record.

Last year my MS felt out of control, and I was desperately keen to do anything (everything) I could to put the brakes on.

Now, it feels more in control – but I consciously remind myself that the long-term risks are still there – and the potential downsides to the condition so terribly severe.

My diet, which had been onerous, does appear to have boosted my ‘good’ cholesterol scores, but has required some serious discipline to maintain and seems to have little, or no, impact on my ‘bad’ cholesterol readings (which is something of a disappointing surprise).

On balance, I am going to keep on at it, certainly beyond my next dose of chemotherapy later this year.

Longer term, I very much hope that I’ll have a growing confidence to ease up on my efforts – not so much when I’m at home in my own kitchen – but principally when I’m out and about, in restaurants or at friend’s houses – the times when I feel as though I’ve been giving up the most.

___________________________________________

As a final thought, I remember advice offered my neurological consultant last year:

“The best thing you can do to counter your MS is to be happy. Happiness, you’ll find, is the best medicine of them all.”

I just need to find a chemist that most reliably prescribes it. That one is definitely an art not a science.

___________________________________________

Note this useful link, which sums up several of the “MS-related” diets that I’ve heard mentioned:

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Diet-and-Multiple-Sclerosis-Bhargava-06-26-15.pdf

 

Footnote:

April 2017: I have now been on my MS diet for 2 years.

My latest blood readings report that my HDL (good cholesterol) is 1.3. This is the highest it has ever been (recommended level is above 1, my historical average is just below 1).

My LDL (bad cholesterol) is 2.1 – which is significantly lower than it has ever been before (the recommended figure is below 3. Historically I’ve tended to be just over this amount).

 

Advertisements

Where did my MS come from?

Standard

Multiple Sclerosis has no known cure and ‘experts’ still debate the best approaches to its treatment and prevention. Each patient seems to experience the condition differently (“my MS”)- with different symptoms and impacts upon their lives. No one can say how quickly a given individual’s condition will progress and the variation in future prognoses pretty much covers the entire spectrum of possible health outcomes. The different types of MS are not black and white, but a swirling mix of overlapping and blurry greys. Even with the benefit of hindsight it is difficult to accurately chart how an individual’s condition has progressed because the identifiers of the condition (multiple scleroses on the brain and spinal cord) may remain stable as a patient’s symptomatic presentations evolve and change (or vice versa). Despite all this, the ’causes’ of MS are pretty well understood… it’s just that they are difficult to describe succinctly because they are a blend of genetic, behavioural and environmental probability factors: the condition is as difficult to prevent as it would be to deliberately contract. Triggers or indicators of the condition have been computed using pools of data – no scientist have ever (or will ever!) sit down and carefully analyse where my own, individual and unique condition has come from… to tackle this frustration I can but hypothesise – see below – and apologise for a self-centred blog.

MS is most commonly diagnosed in adults in their thirties (tick for me); but with a 3:1 ratio weighted towards women. There is a genetic predisposition to the condition that appears to be triggered, not by a single gene, but by the complex interaction between ~100 different genes, each of which, individually, only has a small effect. If you have a first-degree relative (sibling or parent) with MS, you are 20-40 times more likely to have the condition yourself. However, as far as I know, no one in my family has ever been diagnosed with MS before me (‘what a trailblazer’). This is not uncommon though: only 25% of individuals with MS have a genetic disposition to the condition; I can assume that I sit with the majority of sufferers who have developed their conditions due to environmental or behavioural drivers instead.

“Environmental and behavioural” factors do not necessarily mean factors within an individual’s control. Some certainly are: diet, tobacco smoking, stress levels, sun exposure to name but a few, but I refrain from ‘self-blame’ – more statistically significant triggers can be put down more to simple bad luck e.g. exposure to a certain virus etc.

Never having smoked, and (largely) having led a life with a healthy diet and outdoors sports / sunshine, I would not have said that I stood out as a high risk individual. I do, however, read with more interest the theory that the consumption of cow’s milk from an early age may later cause your immune systems to ‘attack’ the myelin sheaths around your brain/spine, mistaking its proteins to those previously identified as being ‘foreign’ within milk. I wonder if, during all those years of veraciously eating bowls of milky cereals and iced milk drinks, I accidently trained my body to attack the wrong proteins. Whether you subscribe to this theory or not, it is acknowledged that MS-issues only arise if your immune system starts getting direct access to layers of your brain/spine that are usually locked safely away behind “the blood brain barrier” . This may happen for several reasons – best summarised as either being through viral infection or trauma.

In my time, I’ve managed to bump my body (read: brain/spine) in a whole host of different ways – most pertinently from bike, skiing, footballing (and the occasional car) crashes – but the statistical links between the Epstein-Barr-Virus (EBV) and future MS diagnoses seems, in my case, to ring more true. I endured Glandular Fever (caused by the EBV) in my late-teens – and my case was fairly typical: I was initially ill for 2-3 months, but suffered several more minor relapses of very similar symptoms for several years afterwards. When I began to start suffering from MS some 12 years later, I initially could only articulate my symptoms as being “exactly like the glandular fever I used to have” – lethargy; fatigue; aching & buzzing muscles and swollen & painful glands. To have now read of a link between EBV and MS seems to completely justify what I had been telling different doctors for all those years: that it felt like I had glandular fever again (tests only confirmed that, yes, I did still have the virus in my system) and it felt as though my spine was ill or infected in some way (and, ps, yes, I do think several doctors will have thought that I was a hypochondriac and a bit nuts…)

But, trying to conclude from the above, drinking lots of cows milk, then having glandular fever, will not have guaranteed my development of fully blown MS. On the one hand, theories that explain MS as a disease of diet and lifestyle choices don’t seem to fit (and I don’t think that this is just a defensive reaction to perceived ‘victim blaming’) – but, on the other, I think a simple explanation of “bad luck” shies away from an answer. Perhaps I’m failing to acknowledge the amount of refined carbohydrates, sweetened drinks and red meat (read ice-creams; shakes; burgers; energy drinks; and flavoured milks) I smashed my way through in my teens and twenties. I was always so active that I perhaps mistook a low body mass index and fat count to mean a healthy diet. Maybe I mistook the hours I spent playing outdoors in the summer to mean a Vitamin-D rich lifestyle, when, being brought up in London, I’ll have spent many a winter’s weekend hiding from the rain in cinemas and playing computer games.

Of course, who cares now? I’m not sure why, but the answer to that rhetorical question is “me”. It’s somehow comforting to know how I have been put together, and to understand that I haven’t just been afflicted by the tap of a magic wand.

On this third rock from the sun, spinning through the vastness of space, our little lives all come down to atoms, molecules, blood-brain-barriers and lymphocytes. I wonder what’s going on now as somewhere behind the scenes, my immune system goes about its busy work, hopefully doing more good than harm.

Making hay (in the Alps)

Standard

I’ve been reading my son the “Little House on the Prairie” series. As our own house buzzes with umpteen electronic devices – from can openers to Ipads to expresso machines to toothbrushes – the books feel like bygone writings about bygone eras. Set in the deep mid-West of the USA, the Wilder family battle against the elements to try and eek out a simple, subsistence lifestyle that survives winter blizzards, summer droughts, prairie fires and locust swarms.

Living in the modern-day UK, I would say that the seasons rotate around our lives (not vice versa). On my bike, I like this revolution and enjoy the act of cycling through all the weathers. Their passing punctuates chapters of time and of life – day by day, month by month; I envisage our planet spinning in its elliptical orbit, in freefall round the sun.
______________________________________________________

On my first ride of the year, the roads felt bald; polished by nightime frosts. I couldn’t trust their gleaming surfaces: winks of black ice amongst the pretty coating of white dust. The morning darknesses felt as though they might crack with cold. The milkyway could be seen, crisp and clear in the sky – an innocent, silent witness to our lives, light years below. Despite double-gloves and shoe covers, my fingers and toes smarted with a swollen numbness, and my body raged with the prickles of MS when I had my hot showers.
_______________________________________________________

Two weeks ago, I rested, exhausted and panting on my handlebars as a stream of sweat poured down from my face. My eyes stung with salt, my lightweight summer cycling-top was soaking wet. I was drinking my water more quickly than I could get to the next water-stop, and my arms and legs were pasted with layers of suncream and dust. I had started to get cramps in my inner thigh, and the soles of my feet were burning hot pressure points. The dominant smell was that of tarmac, which felt soft and sticky as it melted under a blazing sun. I had just passed by a temperature display showing 39.4 degrees. And there wasn’t a breath of wind.
The Alps felt raw. Beautiful. Uncompromising*. And hot.
_______________________________________________________

Inbetween those two rides, as seems to be a reoccurring annual pattern, my MS had first flared up (and dragged me down); it had stutteringly abated; then, with a realisation similar to that of watching the tidal retreat in Pwll last week, it had dawned on me that I could barely see what had been lapping at my toes just a moment ago. There were rockpools and a few eddying currents that remained – but the estuary now showed only the ripples of sand. A convoy of beach vehicles drove where, an hour earlier, the sea had stood.

My toughest day of cycling in the Alps saw me ascend almost 6,500 metres. I drank ~10 litres but still finished the ride feeling dehydrated and sun-struck. When my alarm rang at 6am the following morning I felt drained and empty – but I was not buzzing with pins and needles. Tiredness and pins & needles I have grown to see as being one and the same – but not this time. I mentally turned the physical pages of my own body: a residual tingling in toes and fingers; and my left abdomen; an urgent, and familiar, need to suddenly go to the toilet… but nothing worse.

Perhaps a 200km Alpine bike ride is the cure.

Continuing that bike tour when physically empty allowed for only steady, slow progress – trying to allow the body to regenerate on the bike. Eating, drinking, resting. Avoiding the midday sun. I did feel stronger the next day – but the remaining 3 days of my tour were all on ‘go-slow’. Go-slow, but no MS.

This felt like making hay. Like Mr Wilder in those books: me, reaping the summer harvest of a winter’s hard-work.
_________________________________________________________

Weirdly, and perhaps paradoxically, a few days ago I managed to flare-up my MS by jogging no more than 10 metres alongside one of my boys. Pins and needles back up my torso and arms; a grey palour to my face; a strange disconnectedness to my left-foot; and a few days of buzzy exhaustion followed. I had to lie down with vertigo after looking straight upwards into the trees. I have to watch it carefully, this hiding friend of mine – but I do believe that summertime is “my time” – always has been.

The months pass. The seasons rise and fall. My MS ebbs and flows. I wonder where my new “normal” now sits. Like our earth spinning in the universe, I must remember that ‘my’ MS is just a small part of wider “whole” and so very much more is going on. Make hay while I can – let’s see what next winter brings.

_______________________________________________________

* having re-read I’m slightly embarrassed to have used this word. As “uncompromising” as a tourist-trap with hot coffees and fresh pastries can be!