The MS treatment I want to explore

deflated scull and crossbones balloon

In the news today (20 October) the UK was given the proposition that dying folk should be given experimental drugs before they get through the full trial process. Let’s ignore for the moment that the full trial process hasn’t delivered much for MS patients. So what sort of shenanigans are pharmaceutical companies looking for? Extensive testing hasn’t worked in MSers favour so what sort of dark hell might be unleashed without the double blind placebo controlled ‘gold standard’ in place?

Colorado have reported on this idea in May which a bit puts paid to my theory that it was a fine piece of distraction from the venal behaviour of drug companies not investigating an African disease until it starts threatening the monied, developed world.

My first thought was that it was a bit of damage limitation from the pharmaCos to distract us from the fact that curing a killer like ebola just isn’t financially worth them even starting (do they have a union that does pr for ALL their questionable/commercially sound behaviour?).

Bloomberg Businessweek reported on the plan in August.

Why does the treatment of the disease Ebola have any relevance to MS?

Don’t worry, I’m not connecting the two in a  symptom sort of way but I believe both conditions have been poorly served by pharmaceutical companies.

I really feel quite uneasy about the treatment that pharmacos have meted out on MS patients throughout my 20 year ‘MS career’. When I couldn’t get hold of DMDs, before they were available in the UK I wanted them very badly, then NICE was born (especially to avoid the ‘postcode lottery’ surrounding MS prescriptions) and they became available so I read up the trial results as I’ve mentioned more than once.

In my mid 20s with not many regular symptoms it didn’t make sense to me to take multiweekly injections for a less than 50/50 chance of benefit. Other than a couple of goes at steroids to get back my ability to walk again after fresher’s flu went bad in me I have stayed pharma free.

I think I’ve talked about a vascular aspect to MS having been spotted by Charcot in the 19th century. He gave this disease a name and yet this aspect of our condition is barely being investigated. I’ve certainly mentioned my own taste of this theory in Brooklyn a couple of years ago, where an ultrasound was taken of my jugular veins from the INside where a valve was seen to be blocked shut.

We have more and more appropriate imaging technology since noticing in 19thC postmortem brains that veins might be implicated. Why is this theory not investigated further with the full force of what we have at our disposal? It doesn’t help to get too stressed about it but, no matter how many times I stamp my feet, life STILL isn’t fair. My blood gently simmers at the injustice of our woefully inadequate treatment from the people we’re supposed to trust. I feel for those who live under the shadow of Ebola and the horrific injustice they face every day when they continue to see no effective science being done in their name.

I’m glad my father encouraged me to question everything (perhaps not consciously but he did). I think it’s stood me in good stead for identifying folk’s motives. Although I s’pose, with pharmaceutical companies you don’t have to dig too deep to see the profit motive.

Perhaps I’m very wrong though? See, that ‘question everything’ trait is shining through!

Improving Prognosis?

The image of ivy is from my back garden and illustrates one of the few things that truly thrive there.

NIHCE have issued guidelines to address which treatments might be worth the NHS providing for MS patients. Aside from the disease activity going on in our brains we have similar symptoms to many other chronic conditions. Some of those symptoms are brought on by our bodies becoming increasingly inactive due to deterioration in our brains. It’s even been cheerily suggested by a London research establishment MS could be rebranded as a form of dementia. With this in mind I thought I’d share a link I was sent that was made with seniors in mind but could be useful for anyone that doesn’t move as much as they used to.

  • NIHCE have suggested no longer financing injections of B12 to try and reduce fatigue (unfortunately, I’ve never been able to get hold of any through any number of GPs) but perhaps with more people asking for some basic maintenance strategies from their GP things might change?
  • Vitamin D supplementation is involved in many processes carried out in the body every day and helps regulate the body’s own immune activity. it might be wise to address both of these deficiencies in the general public aswell. A GP can carry out this test.
  • On the pharmaceutical side NIHCE would also prefer not to pay for Fampridine and Sativex. There wasn’t enough evidence to show statistically significant efficacy for all four supplementation approaches.

ivy up close

News of the Commonweath Fund’s conclusions about the brilliance of the NHS in a global league table of developed nation’s healthcare systems (as long as you don’t have a long term condition) I’ve mentioned in another post. The NIHCE use all sorts of equations and algorithms including weighing up loss of tax earnings for the country if these citizens can no longer earn and contribute. Perhaps  the measure for the wellbeing of patients with long term health conditions needs to be adjusted?

I’m conflicted about withdrawing a therapy that has worth for some people but then I remember that the NHS doesn’t have bottomless pockets and whilst some people are missing out on marginally increased walking speeds, baby units and end of life care could perhaps benefit from the spare cash? I’ll still be buying my own supplements even if it doesn’t clearly contribute to improving prognosis  on the NIHCE scale of improvement as I’m choosing to believe when their effects are all added up, these therapies are worth applying to help keep my body working as best it can. I think this outlook involving positive thinking may bring its own benefits.

A UK MS researcher agreed that good things appear to happen during O2 therapy after being asked for his opinion on a study on this website where Israeli long term stroke patients found new brain cell growth/synaptogenesis after receiving intensive O2 therapy in a decompression chamber. There are things we can do for ourselves that might help a little. I appreciate this isn’t a very rock and roll closing statement but it seems we, as owners of chronic conditions are in charge of improving our prognosis.

alternative healthcare

engulfing“Right now, they [mspatients] are not getting the kind of information we as [health care] providers would like them to get,” Wray said.”

This is quoted from a Boston Globe article of the 11th September. ACTRIMS – ECTRIMS researchers were apparently concerned about the ‘perceptions’ of ms patients.

I’d like to know where would doctors and MS researchers present at the conference rather patients get information from?

Surely not them?

Are these the same groups of people who didn’t believe in the possibility of an overgrowth of candida albicans? (thinking of more than one old GP when i make this statement)?

The same people who throw antibiotics at a problem as a first line of defence? (thinking of an old GP when I make this statement) rather than further investigation of the problem. I appreciate GPs have little time per patient but perhaps we could consult a ‘project manager’ for our bodies or even be entrusted to be our own project managers?

We are perhaps the best people to be put in charge of enhancing our own health?

The same group of people who, along with most of the rest of us didn’t know the significance of a microbiota until we found out from various TED talks over the last few years and recently a BBC2 Horizon programme on allergies (I referred to one of the over 1,000,000 pages google finds on the subject in an earlier post?

The same people who thought stomach ulcers were caused by stress not an infection?

The same people who believe that what we eat can’t have as much effect on how we feel and function than their questionably effective pharmaceutical offerings? (thinking of an old neurologist when i make this statement).

The status quo can’t continue.

The image above comes from a collection of mine with the name Earth Abides, Ecclesiastes 1:4. It was the title of a 1949 American sci fi book my dad gave me by George R Stewart. The world’s population gets wiped out and civilisation goes about starting again amongst the remains of our current civilisation.

Looking back, to get an apocalyptic tale as I was on the cusp of becoming a teenager was very good. It taught me to question everything. The message I chose to take from the book was ‘nothing that lives on earth is forever but that’s ok because we can choose to adapt’ and the planet will continue.

Things seem to be changing and we now have architecture acknowledging the presence of and creating designs specifically to take advantage of omni present bacteria.

If we believe that the 20th century was all about stamping out pathogens and healthcare was involved in a mighty struggle between us and them (evil bacteria causing disease left right and centre). Then the 21st century shape of healthcare will be all about harnessing the power of these omnipresent beings to help us, the puny human.

Some question our faltering scientific progress in medicine (as an owner of a chronic condition one of those ‘some’ is me) and ask whether antibiotics represented the only noteworthy advance in medicine since William Harvey’s discovery of blood’s circulation in the body in the early 17thC. This discovery rather neatly yet arrogantly ignores the Ancient Chinese’ awareness of body systems (please see earlier post).

Perhaps I’m biased but I choose to firmly believe that asking questions and finding out answers can only be good for our brains.

I feel the image above still stands as a representation of all that we live amongst and stands as a fine illustration of the impermanence of man. This too shall pass could be an alternative title and probably, bacteria will continue, relentlessly, to play their part long after our petrol shops have gone!

Homemade Fermented Veg

Does having Ukrainian great grandparents mean I have homemade fermented veg in my blood?

I don’t know but it is a really easy process, becoming a little bit organised has been one of its happy side effects.

A search on homemade fermented vegetables will deliver many youtube clips on how to make sauerkraut, kimchi or get pickling to your heart’s content. They can show you better than I can describe the process of making our own, cheap alternative to probiotics. A lot of them show making industrial quantities but have a go yourself with smaller amounts first to see if it’s a habit that you want to get into.

The reason I started making my own sauerkraut apart from reading about its benefits online was it keeps you regular (this doesn’t present a problem for people who have delightful insides you could set your clock by but, if you haven’t got regularity you’ll know how miserable it can be and you’ll have a go at anything that might help!) and it looked a lot cheaper than regular probiotic supplementation.


I use the biggest, widest necked glass jars i can get (big jars of black olives from the supermarket have a good shape)

Fairly finely chop/shred

  • A red cabbage (peel off the outer two leaves before you start chopping and put to one side)
  • Bulb or two of fennel
  • 2 or 3 sticks of celery

Any veg that’s quite firm and holds a lot of water (but not potatoes) I’ve tried mushrooms and lettuce and courgette but they were too soft/water filled, I think and went to mush quickly

I find white cabbage a bit too sulphurous,

Leek gives a really zingy taste but after a week or two squashed in a jar outside the fridge its sulphurous smell is not for the fainthearted!

  • Beetroot (grated or sliced thinly)
  • Grated carrot is something to try chucking in: i think it and beetroot might be quite high in sugars (I’m guessing this is why they turned to a sticky mush on their own?) so probably they shouldn’t make up the majority of the chopped veg mix.
  • a bit of grated ginger or chopped fresh chilli adds another dimension!

Once the veg is chopped I use a big, ceramic cake mixing bowl and scatter over a good teaspoon of seasalt or Himalayan rock salt  (both hold more trace minerals which is a good thing apparently and are much better than table salt I’m told. The salt will stop nasties proliferating and draw water out of the veg. Perhaps also a teaspoon of caraway seeds (if you like that sort of thing)

After 24 hours of the veg sitting weighted down (I’ve inherited a big pestle and mortar but before that I was using bags of water which are quite heavy) it’s time to pack the jars up to an inch below the top.

Various places online suggest treating the jars as you would if you were making jam  ie putting the empty jars in boiling water or in a hot oven to kill off germs I did this once but, being one for the easier life I figured we’re after bacteria why does it matter if these jars are super, squeaky clean?

It is worth giving the jars a good wash tho!

Remember the outer cabbage leaves you put to one side?

Tear the leaves up to fit comfortably over the top of the veg and tuck the sides down the insides of the jar. You want to try and keep everything below the eventual waterline (mould can’t grow underwater). I’ve had a couple of furry tops of jars now and then and that’s when stuff has risen during fermentation and stuck out above the water. I’ve gotten rid of the first couple of inches of contents and the bottom half of the jar has been fine. You can gauge the consistency of the veg for yourself and decide when it looks like you might want to try eating it… or throwing it out!

It should taste sour (the bacteria already present on the veg make acetic acid) but the veg should still keep a crunch and should not go slimy.

My partner is far less gung ho than me when it comes to eating ‘off’ food so I appreciate this might not be everyone’s cup of tea but the only thing you can lose is a bit of time* so, why not give it a try?

Most of take advantage of the fermentation process when we eat, cheese, salami or yoghurt and drink wine or beer

In cooler weather (not necessary in the warmth of summer) you can try splitting up a probiotic capsule and mix it with water. I’ve used a kefir starter which has bacteria in as does VSL#3 the NHS approved probiotic (well, my mum got a prescription for it a while back). You’re going to top up to half an inch below the top of the tightly packed, veg filled jar (between half and one pint of water as a rough guide). I use filter water and the liquid from the last jar (this liquor also makes interesting vinegar for salad dressing). I imagine tap’d be fine too.

I get two jars at a time or thereabouts from a head of cabbage and assorted extra veg.

The addition of friendly bacteria from a capsule gets the fermentation process underway and the jars could be ready to eat in less than a month. Don’t forget to hold them in something that will catch any drips. We’ve created a living thing so the jars will breathe and ooze for want of a better word!

The benefits of cruciferous veg coupled with fermented food and the smug feeling we get for homemaking a ‘thing’ makes this activity worthwhile, for me. I’ve seen suggestions out there to not eat this straight from the jar as we harbour lots of pathogenic bacteria in our mouths that we probably don’t want to multiply. Keep the jar in the fridge once opened (it will still ferment but at a much slower rate).

I try to have at least a couple ‘brewing’ in the cupboard under the stairs at  at any one time.

*Go gently at this new way of eating veg, it’s undoubtedly good for us (please see my candida posts to rule out if you are one of the people that should avoid too much fermented food until you’ve rebalanced your gut bacteria). The microbes in our tums may need a little time to get used to all their new friends.

A wider group of friends for your gut microbiota can have positive effects on the body as a whole but especially so for the brain (microbes themselves are microbiota whereas microbiome describes their genes)

mainstream and less so

night scene of a Brooklyn sidewalk

I took this image when I was getting a form of angioplasty to counter some of the effects of MS in 2012. It hasn’t stopped the disease but my heat intolerance and brain fog is still vastly reduced two years later. I don’t believe the auto-immune theory answers all the questions that MS poses.

The auto immune theory lies at the base of mainstream, accepted MS treatments (see below for details and links on most).

An auto-immune disorder arises when the immune system, the body’s bouncers get confused, go a bit postal and start attacking the body’s own cells. In the case of MS the bodyguards appear to start beating up the nerves’ protective coating (myelin). There’s still big questions about proof that this is what’s happening in MS. MS auto-immune and/or neuro degenerative?

In the vascular model, researchers hypothesize that these bouncers are merely sweeping up at the end of a particularly rowdy night rather than attacking these cells themselves. It is theorized the damage was a side effect of vascular disruption.

The autoimmune model believes that these bodyguards go rogue and kill perfectly healthy and functioning cells. They can no longer distinguish between foreign cells (whose presence would rightly cause an immune response) and self.

The alternative MS theory has been explained most recently by Paulo Zamboni of Italy. He considers MS to be mostly a vascular disorder and a name for this disorder is Chronic Cerebro Spinal Vascular Insufficiency (CCSVI). There are a number of people who don’t agree with the theory that has its roots in the 19th century.

I felt the theory was worth further exploration and went to Brooklyn to get someone else to explore my vasculature for me.

The standard medical approach to multiple sclerosis includes disease modifying therapies, DMTs that don’t really address symptoms as such and require quite a leap of faith in your belief of your caregiver’s ability to alter the course of your disease. That could encompass having a belief in your yoga teacher as much as the men in white coats.

Having some sort of belief in something appears to be good for your brain to get on with its own healing (our brains consist of about 7% stem cells that could, in theory replace our own damaged myelin. Choosing to believe in something I don’t believe is silly.

MS medical treatments started with Copaxone, Rebif, Avonex Beta-Seron (fondly referred to as the CRAB drugs by past patients) which form the cornerstone of accepted MS modification. These guys have a pretty exhaustive list of some treatments available to us. The first of them was released in the US in the early 1990s and the fair prescribing of them brought about the creation of NICE (National Institute for Clinical Excellence seems to have changed its name once or twice and now stand for NIHCE… Health and Care Excellence rather than Clinical.

Newer treatments include Tysabri which has a very chequered history including being withdrawn from market and then brought back and still being responsible for some of its users contracting another brain disease entirely, PML!

Campath or to give it it’s newer name Alemtuzamab works by knocking out certain proteins in the patient’s immune system. This therapy was first used to treat cancer – decide carefully about the risks and benefits attached to taking any treatment but perhaps especially a recycled cancer drug?

Alternative treatments I’ve tried include hyperbaric oxygen therapy HBO, treating CCSVI, physiotherapy, Feldenkrais Method, Shiatsu, Reflexology, diet modification (gluten, dairy and sugar free), as wide a range of exercise as is possible, mindfulness, MBSR emotional freedom technique EFT, vitamin and mineral supplementation, Low Dose Naltrexone (LDN), Inclined Bed Therapy (IBT), and are discussed further on other pages on the site.

I also take cannabis using a vaporiser as it seems if big pharma are trying to replicate the real thing with Sativex why don’t I just get hold of some of the real thing?

I feel having a chronic condition calls for becoming an active participant in our own health rather than sitting back and taking what’s offered.

TCM v. Western Medicine

Traditional Chinese Medicine is taking more and more space in a GP’s toolbox of treatment options where whippersnapper Western Medicine is unable to provide help.

What breathtaking arrogance!

This post will be about a man who has an opinion reported to you by a woman who also has an opinion.

I make this clear because as human beings we could both hopefully have our voices listened to. As a medical professional, his opinion on medical matters can be rightly considered more important than those of a graphic designer/retired photographer.

With his training we could expect this professional to be an expert of sorts and after graduation when all his knowledge was fresh that would have been the case but there doesn’t seem to be the same need for CPD (continuing professional development) for doctors or consultants as there is for the rest of the general working public and so ignorant doctors are perhaps becoming more common?

If there was a need to brush up on what’s new in his profession then he would have been aware of all the research available:

All it takes nowadays is one Google search for “acupuncture pain relief research”.

As owners of a bopdy with its attendant aches and pains we are perhaps more invested in investigating methods to feel better than any expert might be? After all, they get to close the office door on our conditions at the end of their working day.

Dr David Calhoun was speaking on the World At One on radio4 on the 2nd of April, 2014 giving his response to learning that the NHS will be paying for acupuncture for their patients.


Discussion between the enthusiastically ignorant Dr David Calhoun and Professor Martin Underwood is in the last 5 minutes of the 45 minute show. Dr Calhoun seemed thoroughly unimpressed that the NHS would be wasting their money paying for patients to receive acupuncture. A treatment that had no proof of worth in his professional opinion.

Professor Underwood on the other hand, had a far more pragmatic approach  He’s decided on the worth of many treatments that NICE will pay for and this treatment carries next to no side effects for the patient, is relatively cheap for the health service and may even help patients feel a little better.

Let’s save discussing the efficacy or otherwise of expensive, often side effect laden, pharmaceutical treatments on the market for another post.

By describing acupuncture as nothing more than ‘theatrical placebo’ Calhoun managed to rubbish a 6,000 year old medical system in the blink of an eye.

A system that’s been around three times longer than the time we’ve spent without Jesus can’t be without any merits, can it? How long has Western Medicine been around?

William Harvey ‘discovered’ the circulatory system of the human body in the 17th century and Whippersnapper Western Medicine has proceeded to ignore its presence and relevance in many disease states since then.

China have been aware of circulation for much of those 6000 years and some have argued that the poorly translated ‘qi’ ( the word whose use gets guffaws from the seemingly uninterested among the medical establishment) is in part related to the flow of blood which delivers energy by transporting oxygen and carbohydrates.

It could be argued that Harvey’s ‘discovery’ marked the start of Western Medicine but usually Hippocrates, who seems  revered as the father of modern medicine was also around before Jesus. By all accounts he was a big believer in talking to the patient and assessing how they look and how they say they feel.

This is something that western doctors appear to be losing the art of in favour of tests that will show a need for a pharmaceutical treatment. I appreciate this isn’t Dr Calhoun’s fault, perhaps he has a fantastic bedside manner which, in itself delivers a placebo effect to his lucky patients.


ps. The image is from a collection of mine that started as a response to the term zebra when used in a medical context. I photo’d the zebra while waiting for my vietnamese acupuncturist.

Medical students when receiving training have been told since a Dr Theodore Woodward (a 1940s Maryland US, MD), warned them, on hearing hoofbeats don’t look over your shoulder and expect to see a zebra. Exotic diseases are much less likely than the more commonplace.

Certain types of medical zebra appear to be becoming more common and that particular part of a doctor’s training, perhaps ought to change? (we’ll discuss elsewhere the way the disease MS has changed in its definition at least twice in my lifetime – is it auto-immune or inflammatory?)