positivity, because you’re worth it!

It’s been a kind of a busy season including the most recent piece in my health and wellbeing puzzle which involved a welcome shot of positivity… and an overnight stay in den Haag last month.

Most if not all the posts in this blog from the last year and more, address something in life which can be adapted or adjusted to make our life a little bit better.

Life hacks?

Hardly, as I lack the dedication to attach scientific rigour to things I’ve found out and chosen to share with anyone that’s interested.

Looking online; reporting on hacks would appear to be a mainly male pursuit, or perhaps they’re just the ones that better broadcast their results?

part of the integrative journey

Anyway, speaking to the dutch therapist and walking away with a stack of his handwritten notes has left me googling quite a lot!

…”And then I discovered the PADs.

Well, I didn’t discover them, of course — they’ve been known for decades — but what I learned in my little sabbatical from corporate science here at Atlas is that autoimmune disease is caused by autoantigens.

Duh, you say.

But that statement has more content than your typical tautology. Autoantigens are active participants in the initiation and development of autoimmunity. After all, breaking tolerance is not a trivial thing — we have elaborate mechanisms to make sure that it doesn’t happen. So you need to produce autoantigens in sufficient quantity and context to prompt your immune system into performing an unnatural act. Then, over subsequent years and decades, you have to continue to produce autoantigens to mature the immune response to the point that it becomes clinically relevant. Once disease gets going, autoantigens are the raw fuel for the inflammatory cycle that sets up in target organs, and they drive the formation and deposition of immune complexes, which account for much of the morbidity and mortality in patients.

So, yeah, autoantigens are kind of a big deal. What if you could stop the body from producing them? What if you could deprive the immune system of its inflammatory fuel?”

 

PAD inhibition, just one amongst a stack of other scribbles from the dutchman,

integrative to the max

led me to the quote above which is the most rational description I’ve seen for contracting a variety of chronic conditions and explains the relative lack of effectiveness of immunomodulators

I feel like I’ve been given a lifeline! Having a condition that people don’t seem able to treat effectively can ultimately be quite lonely. The consultation with a Dutchman left me feeling more optimistic than I have for a long time.

I believe that positivity, now bathing my body’s cells in place of state engineered defeatism is as much of a boost to my health as any amount of exercise and personalised physio. In the next few posts I’ll go further into what I’ve been told and found out, including breathing exercises and eating plenty of good fats, no stuff from packets and a little less than a kilo of veg a day!

 

Avenues of MS research everywhere!

My own research into increasing variety of movement.

New news, apparently… not the same old news!

Quite often there’s not much to report in MS research or what there is to report is all the same shape – either ineffective or carries the potential of life threatening side effects but… there appear to be a handful of avenues opening up!

A family friend from the US sent me this link last week the way concerned friends do. It’s nice to know that folk care and are thinking about you which can give as much of a lift as anything from a blister pack or bottle.

This article was referenced in the Newsweek article and it prompted me to buy some

  • Tavegil/Clemastine, an OTC (over the counter, no prescription required) antihistamine. It was the only molecule tested (out of a 1000 in their lab) that had any effect on the growing of a myelin like substance on little glass pyramids or something like that (yes, science is strange) but perhaps it will help my body regrow some myelin?
  • I’ve been using phospholipid complex since December (mentioned here) and enjoying a poached egg yolk every day to try and support my brain by giving it building blocks for the last few months.

Interestingly, to an utter non-scientist like myself this page describes part of the reason as to whether there might be a useful effect.

I’ve been signed up to be contacted and perhaps get enrolled in the SMART trial. It will be trialling three existing treatments that were developed for other conditions and, I believe are now out of patent so there is little money to be made from them in their original setting (it could be argued).

  • Ibudilast was one of the three therapies to be tested on secondary progressive MS patients when I showed interest last summer. It has been used in Japan (mostly) for the past 20 years as an asthma therapy. It’s a very good anti-inflammatory, apparently.
  • Riluzole has been used to treat The Ice Bucket Challenge disease or more properly Motor Neurone Disease once also known as ALS or Lou Gehrigs disease, I think?
  • Amiloride which is used to treat heart disease – got no punchlines or interesting facts about that treatment or condition.
  • Fluoxetine (better known as Prozac and usually used to treat depression) is taking the place of Ibudilast.

To a layman, I see the mention of having an effect from the antihistamine on asthma and see that the Japanese asthma treatment has been taken out of the MS trial (being funded by Edinburgh University) and I wonder whether perhaps the drug’s creator might be able to change a molecule or two and get another lease of life out of the out of patent drug by repackaging it as an MS treatment?

Seeing this article about the possible role of a psychedelic drug in the treatment of asthma (well, it worked on mice in the lab) leads me to think the creators of pharmaceutical interventions employ  what seems to be a scattergun approach to the therapies they push on us the patients and it really is worth not holding one’s breath for miracles. I’m an entire human being – my body and brain can’t easily get by without the other!

“What we have demonstrated for the first time is that they are also effective in treating physiological diseases outside of the brain, a completely new and exciting role for this class of drug” says study author Dr. Charles Nichols.

a line of wild animal toys

Whilst keeping an eye on various pharmaceutical offering in the pipeline I think I’ll keep up with my personalised integrative approach. My most recent exercise addition is ‘walking like an animal’ using hands and feet not on hands and knees. I can’t manage the half an hour a day that was recommended to me but after a few goes each day for the last couple of weeks I’m an awful lot better at it than I was!

This physiotherapist in Scotland was reported in New Pathways magazine last year and has now received funding to investigate his results from Edinburgh Napier University. I don’t know how or even whether it is allied to the Edinburgh University conducting the MS SMART trial at the top of this post but I think I’ll continue looking at healing my body from a number of different angles.