Tag: complementary therapies

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 pathogens, chemicals, drugs, vaccines, 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.

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.