Circulation Cracked?


what does this image have to do with improved bloodflow?

Nothing, except mackerel is also good for the brain.

So, what if any benefits have I noticed after beginning to address circulation and bloodflow issues in me in 2012? Has improved bloodflow below my head made any sort of difference at all?

I believe it has and will list the three things I’m sure have improved and touch on a couple of other points at the end.

zebrafish

HEAT INTOLERANCE GONE

My brain no longer feels like an overheated computer that’s given up and switched itself off thanks to a prolonged lack of clear flow of air to its cooling fan. The same thing I (and others who believe in Chronic Cerebro Spinal Venous Insufficiency) was happening to my head. Blood was returning to the heart along the equivalent of tiny, country lanes (collaterals) instead of getting onto the motorway and speeding its way back to the heart. This leaves the head, so the theory goes with deoxygenated blood for longer than it should.

BRAIN FOG GONE… MOSTLY.

I still occasionally get a brain freeze like the Green Party Leader when being interviewed in the run up to the UK general election in February, 2015. When that happens, I completely forget what I’m talking and thinking about. She thankfully managed to continue getting words out! Nowadays this mostly happens when I’m stressed (as she was). A meal with more sugars than normal can disrupt the bacterial balance in my gut which I think also gives me a foggy/groggy brain after waking.

FATIGUE GONE.

Aswell as bone crushing tiredness (with no obvious culprit) I was also dozing off after meals which I think was more of an unsteady insulin response but since removing sugar and foods that turn to glucose quickly in the bloodstream this also has gone.

Exercise helped there, too. Specifically, short bursts of intense exercise got my body back to dealing better with sudden rushes of glucose. Raising my heart rate and breathing perhaps jolted my body out of its increasingly sedentary state and reminded it of how it used to function? I mention this as a disordered response to blood sugar also causes fatigue – we’re multifactorial beings so addressing bloodflow from the head was only ever going to be one part of my healing process.

In fact, it’s almost as if the way we treat our bodies has an effect on how they perform for us!

Who knew?

Two more angles to come at the MS symptom problem from are listed below:

I knew my love of zebras was more than just admiring their stripes! This piece of research tells of the zebrafish’s suitability for studying the formation of myelin, (transparent if brief lives). I think it’s safe to say MSers have never been transparent but more importantly in the area being researched in the zebrafish study we can no longer effectively make myelin.

This research makes me wonder why on earth the regrowing of myelin or the vascular aspect of MS not been major topics of investigation?

Sleep and getting useful amounts of it has been touted again in the wellbeing media as one of the kindest things we can do for our brains which is good news to me as I love the stuff!

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.

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!

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.