Please note that I am not a doctor or a scientist, and cannot provide medical guidance or advice.
Further, I cannot provide guidance on nutritional or alternative treatments.
Anything shared by me is not to be taken as guidance or advice for others’ treatment needs.
I encourage patients and the public to use the resources I share to further their own research
as well as speak to their doctors. While I will post on my social media when clinical trials are happening
and results thereof, I am not in control of trials, I do not have an ‘in’ to help patients get
into trials, and cannot speak to anything regarding trial protocols.
My mission is to call for more funding for bioelectronic medicine research and clinical trials,
expand access to more patients, and organize educational and outreach opportunities
with the medical community, government, and other stakeholders to ensure that bioelectronic medicine
is practiced in a clinical setting to benefit patients as soon as possible and for generations to come.
SO, WHAT IS THE VAGUS NERVE?
The 10th cranial nerve, its name is derived from the Latin word for 'wandering' because it wanders from the brain stem down to all of the body's organs.
WHO DISCOVERED THE VAGUS NERVE'S ROLE IN INFLAMMATION?
Dr. Kevin Tracey discovered the mechanism of the 'Inflammatory Reflex' in 2002,
and he and his team have spent the last twenty years mapping the pathway of this mechanism
at the Feinstein Institutes for Medical Research in Manhasset, NY.
WHAT IS THE INFLAMMATORY REFLEX?
The Inflammatory Reflex is a neural mechanism that modulates communication
between the brain and the immune system. Afferent fibers of the vagus nerve
communicate from the immune system to the brain, and the efferent fibers
of the vagus nerve reflexively regulating the production of inflammation from the
brain to the immune system in response.
Click here to view Dr. Tracey’s Ted Talk on this.
WHAT IS TRANSCUTANEOUS VAGUS NERVE STIMULATION?
It is a way to stimulate the vagus nerve externally, so it does not require an implanted device.
Research and trials at the Feinstein Institutes have been promising in rheumatoid arthritis and lupus,
and researchers will continue to explore more indications.
IS VAGUS NERVE STIMULATION APPROVED BY THE FDA YET?
It is only approved for epilepsy and depression at this time but with different stimulation parameters.
SetPoint Medical has obtained Breakthrough Device Designation from the FDA,
which means trials so far have proven to be more effective than current therapies
available to patients today. Because of this, as long as the data continues on this trajectory,
at the conclusion of the current phase three trial it will be fast-tracked to
FDA approval for rheumatoid arthritis.
WHY IS IT TAKING SO LONG TO GET THIS OUT TO MORE PATIENTS?
AND WHAT CAN WE DO ABOUT THAT?
There's a lot that goes into the first question, and I encourage you
to read 'I Dissent: A Patient Advocacy Manifesto', where I thoroughly answer that question.
Regarding the second question, it would be helpful for you to contact your Congressional representatives and ask that they pass The Body Electric Act, which you can read about here.
CAN YOU TELL ME WHICH T-VNS DEVICE TO BUY
AND WHAT STIMULATION PARAMETERS TO USE?
No, I can't. Click here to read the Rules of the River.
WHO RAN THE TRIAL YOU PARTICIPATED IN?
Click here to learn about their
Phase 3 VNS trial for rheumatoid arthritis.
HOW CAN I LEARN MORE ABOUT OTHER CLINICAL TRIALS?
I encourage you to check in with clinicaltrials.gov every week.
patient database so that when the Feinstein Institute conducts a clinical trial that fits your needs,
I will contact you immediately.
ARE THERE ANY SIDE EFFECTS?
There have not been any reported side effects in clinical trials.
WHAT IS YOUR EXACT DIAGNOSIS?
Crohn’s disease with seronegative enteropathic arthritis which is part of the
ankylosing spondylitis family of arthritises, extraintestinal manifestations
of pyoderma gangrenosum, and osteoporosis.
WHAT MEDICATIONS HAVE YOU TRIED?
I was on and off of prednisone ever since diagnosis — generally at 40 to 60 milligrams during really bad points, and then at 10 or below for maintenance. That was really the only thing that held me over.
Until vagus nerve stimulation, I was never in remission. I tried every biologic and DMARD under the sun:
Remicade, Humira, Cimzia, Entyvio, Enbrel, Methotrexate, Stelara, Simponi, Imuran, 6mp,
Pentasa, Entocort, Uceris, Sulfasalazine, Asacol, Plaquenil, Celebrex, and Lialda.
None of them worked. My body always built up antibodies against everything.
DO YOU TAKE ANY MEDICATIONS FOR CROHN'S OR ARTHRITIS?
CAN YOU EAT WHATEVER YOU WANT OR DO YOU FOLLOW A SPECIAL DIET?
Personally, I don't think anyone should just 'eat whatever they want.'
The way I see it is that you don't go through as much as I have to attain health only to create new health problems by eating junk. I eat what's good for me. And I treat myself when I choose to.
ARE YOU HBLA-27 POSITIVE?
ALSO — WHO IS MURPH?
Murph is my vagus nerve implant, inspired by the movie Interstellar.
The main character, Coop, describes how Murphy’s Law isn’t what it’s thought to be —
it has been misconstrued to mean that “anything that can go wrong, will,”
but he says that what it really means is:
“Anything that can happen, will happen.”
That seemed to fit.