A major part of the stories of #iamthefaceofMAID is that some health conditions are NOT recognized and/or treated in Canada (like MCS and hEDS). BUT!!! They are recognized by #MAID. This is THE disconnect Canada! This is why we need to talk about #IamthefaceofMAID 1/n
If #MAID will recognize conditions, like #MCS and #hEDS, and there are not even specialists in Canada that treat those conditions. Well, we have a problem.
2/n
The #hEDS community struggles every day, thousands of us, for treatment that we know is available but it is not offered in Canada. Often we travel to the US for diagnosis because there are so few specialists in Canada. The surgeries needed are not offered in Canada. 3/n
As a #hEDS patient with CCI and cervical stability issues I cannot even get the right type of MRI in Canada through medical services (a flexion-extension MRI) to be diagnosed properly. The only one in BC is in Kamloops and is not covered by BC medical. 4/n
Let me repeat. I cannot even get a proper diagnosis in Canada for my condition because we dont have the right MRI machines. No Canadian Neurosurgeons will even see #hEDS patients or look at their scans (we have all tried). 5/n
Our only option is 100K cervical surgery offered by two specialists in the US. The full expense of this would be born by the patient. Unfortunately many of us are simply too sick to travel for diagnosis and treatment and based on the cost it is out of reach for most families. 6/n
When I realized the women in the Simon's commercial was 36 and had already been euthanized and that we shared a diagnosis - its hard to describe how I felt - I was torn apart. I know each step she followed to get where she went and each thing that happened to me 7/n
to ensure that my path went in a different direction. I was her, I could be her. I could still be her. That things wont suddenly go downhill for me again is not a given. My health is very poor but somewhat controlled. Tomorrow, who knows. 8/n
#hEDS is a condition that most dont find about until their 30s or 40s after 20+ specialists and doctors. There is no reason for this. Its not a hard condition to diagnose. It should have been done when I was a child - when lifestyle changes could have made a difference. 9/n
My own diagnosis was by chance. A visiting specialist in #EDS from England was doing a sabbatical at the Genetics Center in Halifax when I had my appointment - they did a Beighton test right at the end of my appointment when they saw how much compression gear I wore. 10/n
This was in 2017. I was 43 when I was diagnosed after years of dragging myself from specialist to specialist all the while getting sicker and being told time and time again it was all in my head (and I was a tenured Biology professor at a major research university!). 11/n
Minimally invasive vagus nerve stimulation modulates mast cell degranulation via the microbiota-gut-brain axis to ameliorate blood-brain barrier and intestinal barrier damage following ischemic stroke
Where do you start? Are you reacting to everything?
Three steps are essential when starting treatment for #MECFS #LongCovid.
1. Deal with mast cell reactivity 2. Deal with GI issues
Wait, you ask, didnt you say three?
Well yes. The last, which applies to both mast cell (MCAS) and GI issues is DIET changes.
Diet for most of us is what IS driving the new food sensitivities. The only option is to cut them out. These are not allergies, these are autoimmune/mast cell reactions - you cannot keep eating this stuff and expect to recover.
Start by removing dairy, gluten, corn, soy and following the AIP Autoimmune Paleo diet or the PK diet. Add fiber.
For 1. mast cell issues - it takes a multi-layered approach. Try combinations of H1/H2 antihistamines such as certrizine/famotidine, nasalcrom, fibroprotek (supplement by algonot), luteolin, quercetin, ketotifen (and DIET)
For 2. GI issues - it takes a multi-layered approach but a combination of BPC-157, zinc-carnosine, L-glutamine, butyrate, d-lactate free probiotic mix, are a good place to start (and DIET).
Once a bit of stability has been achieved work on minerals, nutrients, neuroinflammation and the gut-brain axis will begin to normalize.
You are re-building health. The foundation needs to be built before the house.
Does constipation affect the autonomic nervous system?
Could your vagus nerve stimulation not be working as well as it could due to colon dysfunction?
Yes. Yes. Yes.
*~80% of the serotonin in your body is made in the colon.
*The vagus nerve is attached to the colon and what affects the colon affects the vagus and vice versa.
*the research on this subject is scant due to organized medical misinformation but studies suggests pounds and pounds of feces gets stuck and build up over time.
*biofilms and pathogens secrete chemical environments that are inflammatory.
My research focus has taken a left turn this month as I have dived into colon health and why and how colonic irrigation might be a key intervention for those with #MECFS and #LongCovid.
I have been focused on GI pathogen load as well as pathogen load on the skin, head, nose, mouth, vagina. Targeted techniques to REMOVE this pathogen load and probiotics to re-normalize and re-constitute a protective microbiome.
spend some time looking at these pictures and you start to get a sense of why the colon may be the target part of the GI for interventions and probiotics vaga-de-emprego1.blogspot.com/2020/01/vagus-…
It sounds obvious right? But only in last few decades has this bidirectional communication been directly studied.
The name for it is neuroimmunology. It is also known as "mind-body" - but this is not woo woo - this is hard reductionist science - brain regions associated with emotions can be studied to learn how behavioural manifestations affect immunity.
How we went so long thinking otherwise is more than a mystery to me. I mean, of course the brain sends signals to the immune system.
Chemical messengers - cytokines and neurotransmitters are released by the immune cells of the brain.
"Neuroimmunology is one of the fastest-growing fields in the life sciences, and for good reason; it fills the gap between two principal systems of the organism, the nervous system and the immune system."
This is the field that will figure out how and why vagal stimulation can be such as important treatment.
I have been exploring splenic ultrasound for almost a year now and it is one of the most exciting low-hanging fruit areas of intervention for post-viral illness. Cheap ($100-200) and takes only a few minutes a day.
See my videos and posts on splenic ultrasound and vagal stimulation.
Search string @chydorina splenic
and follow @SterlingCooley - who is a thought leader in this area as well as researchers and Asya Rolls
Polyphenols can play an important role in managing neuroinflammation.
But how to decide? Resveratrol, curcumin, quercetin, baicalen, luteolin, oleuoropein, rosmarinic acid etc.
This is a great paper and Table showing experimental data on use of polyphenols in neurological disorders.
Personally, I am a big fan of "Algonot" products, formulated by mast cell expert Dr. Theo Theoharidies. They cover a LOT of the bases and are one of the best (maybe the best) brands out there for those with allergies and mast cell issues.
Also check out the new curcumin formulation by @ProdromeScienceijbs.com/v20p1332.pdf