Any port in a storm?

water water everywhere

I chose this image of mine to illustrate the need of any port in a storm but it’s a disordered environment, really. The glowering images of a storm on a Norwegian sea I’d thought of to illustrate this post are on a packed away external drive at the moment. I feel now, this image works better – something’s wrong with what would normally be a charming image of rural countryside.

There might be any number of contributing factors that bring a hint of the nautical to what should be a bucolic agrarian scene.

Brain you tube: The body will keep circulation for as long as possible to basic stuff like breathing. The newer stuff – thinking, writing poems, doing a One Direction dance are not worth saving at all costs by the brain. They’re less important because they aren’t essential for our survival. I think it’s good to get an image of how things are supposed to be.

Fecal transplants seem to be something that’s been helping conditions obviously affecting the gut – Clostridium Difficile for example. Now it’s also being suggested for neurological disorders such as MS, Parkinsons and Autism.

This post will be full of things that have caught my eye recently. Here’s one to throw into the mix: alkalize for health. We all know that veg especially greens are good for us (read previous post here where I speak about folate) but also making our body less acid has untold benefits for a body that’s become used to one too many cakes or steaks (both food items I heartily approve of but probably not that extra helping?) Trying to increase the number and variety of veg in the diet I see as the take home message of the page.

Get to know your body whether it’s behaving well or not. I had my genome sequenced. I mention my experience of the process in previous posts here and here. It’s pointed out that my supplementing with

  • vitamin B12 will be better being done with hydroxy rather than methyl B12.
  • My vitamin D receptors aren’t working properly which could explain my especially bad SAD in December/January.
  • certain glutathione processing SNiPs were completely missing so it seems it would be a good thing to supplement with glutathione (I’m using a cream applied under the ribs (over the liver) that will be absorbed transdermally and will hopefully give my liver a bit of a leg up and help it rid the body of general day to day toxins. I hope this might result eventually in a bit more energy. I probably have a lot more reading to do!

Here is another page that highlights why we want to get all the vitamin D we can. The methylation cycle is fiendishly tricky to understand (well, it is for me anyway).You may have noticed from the flavour of the posts on here so far that I’ll point you toward things that aren’t necessarily cures – the approach, protocol or exercise regime won’t make you all better by tomorrow but I’ll suggest things that might make life a little better whether you may be someone with a condition, care for someone with a condition or, you’re entirely well and somehow ended up on this site.

How does this help?

It might not help anyone else but I take some comfort knowing there may have been an underlying reason I didn’t fully engage in life at school and could never have been considered life and soul of the party! Half the population are thought to have impaired SNiPs. The information I’ve found out about me makes me wonder about the worth of double blind placebo controlled trials for complex conditions and also all the people who grew up being told they were slow, stupid or lazy.

All these lines of investigation and exploration might help an individual a little bit. I believe any port in a storm will do for me. Having a chronic, neurological disorder I believe can sometimes be likened to being lost at sea. You can’t rely on a stable base or solid ground or anything!

Dr Amy Yasko, a molecular biologist with an interest in healing her child’s autism has written about the process she has taken to getting a disordered brain back to some kind of normal.

I consider myself to be at the beginning of this process.

  • I took a food intolerance test over 10 years ago so know what foods my insides prefer not to deal with (dairy and gliadin, gluten essentially).
  • I got 23andme’d this summer and have found out I need to reshape a malfunctioning (from birth) methylation cycle and
  • I’ve been on a candida clearout for the past few months (please read 2 earlier posts on the subject here and here).

I wonder whether a body not working optimally from before birth also contributed to some of the vascular issues whose existence is being debated in cases of MS. I went to get CCSVI’d by Dr Sclafani in Brooklyn two years ago and have mentioned it here)The hypothesis that Dr Paulo Zamboni first put forward in 2009 but was initially investigated by Dr Franz Schelling (which i talk about here) is called ccsvi.


As we know, MS (and life) is multifactorial.

eat your greens!

green leafy vegWe can science-ize the term ‘eating your greens’ for the 21st century by talking about the beneficial effects of folate on our methylation cycle.

As people with a long term condition we can seem easy prey for all sorts of quackery. This is an article that I believe might chime with our innate penchant for experts. This is another article that mentions the therapeutic use of a substance for a range of chronic conditions. This, on the other hand is an article about a therapy that has fallen from favour since its birth at the beginning of the 20th century. I don’t include mention of this therapy because I advocate its use (it could be great, I haven’t looked into or had experience of it) but rather as an example of how science and medicine (it appears) aren’t ruled by efficacy but fashion, chance and luck.

The author of the science based medicine blog (a laudable fondness, it would be nice if mainstream ms treatments could follow that same model!) doesn’t damn the little known therapy out of hand. He could find no data to say the therapy didn’t work so wonders why it did fall from favour?

My cynical self wonders if its demise coincides with the growing clout of the pharmaceutical industry and it’s love of treating symptoms rather than getting to the root of the problem. But I could just be a bitter old cynic!

Another area of research that in an earlier post I said I’d be getting back to you about looks at the level of homocysteine in us (it’s a naturally occurring substance created as waste products of essential bodily processes involving mitochondria, like making ATP (these little aliens in all our cells are the energy factories). and when our bodies are functioning at their best we are able to process it. This is good as it’s apparently a better indicator for cardiovascular disease in the future (in all its flavours) than any number of HorLDL cholesterol measurements. When we’re functioning optimally our bodies are able to break down and disperse homocysteine as part of the methylation process.

You may be able to tell, this is still quite new to me. From what I’ve gathered from Ben Lynch’s presentation on the MTHFR gene mutation when things aren’t performing optimally the body gets tired and like all of us, when that happens things start to go wrong. It shows in a number of ways including a variety of chronic conditions or cancers.

We can begin to address this by getting in touch with 23andme.com to get our DNA sequenced which, apart from letting us know where our ancestors are likely to have come from can also (after the data is interpreted by a functional medicine practitioner) let us know of some common markers that identify the potential shape of future disease in us. Personal healthcare is getting personaller!

I’ve begun this process as my dad’s family left Ukraine at the end of the 19th century and I’m nosy and would like to find out more. Not just to identify gene mutations or SNPs as I believe they’re called but to get in touch with my ‘roots’. This information can give you percentage likelihoods of getting certain diseases (if you ask your practitioner for that information to be revealed to you).

I figure knowledge is power and if I’m aware of potential problems I can head them off at the pass and reduce the possibility of that potential by how I live my life right now.

 Before I start to think about the results of any of this information coming back to me (the process takes a few months) I plan to eat even more fresh greens. Folate is pretty important at helping our bodies function at their best so, when your mum told you to eat your greens when you were little it seems she was talking some sense and perhaps we should have tucked in and shouldn’t have rolled our eyes so much?

Personalised help for MS and other long term conditions?

23andME

So, in the post “eat your greens” I mention the process I’ve just begun which involved sending some spit over the Atlantic to have my DNA sequenced by these folk. I had some reservations about finding out something in my genetic code that might be lurking in the future but, knowledge is power. I might be worried about how this data could be used if it fell into the wrong hands but having an ms diagnosis in the here and now has already made me dead to insurance companies. I’m perhaps being pretty naive not making myself aware of the details of unforeseen data splashing horrors but I prefer not to spend time thinking how awful life could be.

So, being an impetuous child I went ahead anyway!

This is lifted from wikipedia‘s explanation of SNPs “Variations in the DNA sequences of humans can affect how humans develop diseases and respond to pathogenschemicalsdrugsvaccines, and other agents. SNPs are also critical for personalized medicine.[5]

For folk interested in family ancestry this sort of data could be a boon for identifying where great, great auntie Val has most ancestors. So many possible starts of stories!

The flipside of this personalisation is that genes don’t represent ‘set in stone’ certainties. A percentage chance is expressed for which conditions your body could be becoming most primed for. Epigenetics is becoming a fascinating topic for speculation and research. It studies how we interact with our environments and how our grandparents did also. I think I’ve mentioned the 2ndWW dutch famine research elsewhere?

Instead with 23and me sequenced data, we have information to act on…stop smoking.. eat more veg… (which is pretty good advice for most people) but supplement specific vitamins and minerals because certain SNiPs are weak in your sequence and can’t do a certain type of processing which might help us get a bit of extra energy for example. I mentioned methylation in another post, it refers to how our bodies allow the process of making energy in all our cells. How we treat our bodies is far more defining than some paperwork as this particular article spells out.

I feel a need to do these things (or perhaps it’s straightforward desire – a coping mechanism if you will?) because no one cares about my health and wellbeing as much as me. Certain medical professionals care about the condition they’ve become ‘experts’ in but only in their specific research area. How a body functions doesn’t seem to concern say, a neurologist. I feel invested enough to look at all sorts of strategies and specialisms to try and get my body working a little better and I don’t have any affiliations that might stop me looking in a range of areas.

This is why I’m interested in the vascular dimension to a number of chronic conditions. Sometimes, it doesn’t feel like there’s enough curiosity in science. I believe sometimes healthcare professionals could do with getting a bit of distance from a disease shaped problem to get a chance at seeing the bigger picture in individuals.