FAQ & Disclaimer

Disclaimer:

I work as the Director of Education and Outreach at the Feinstein Institute, and my mission is to help people learn about bioelectronic medicine and other innovative research happening at Feinstein/Northwell. Further, I am a Crohn’s patient that has benefited from a clinical trial run by SetPoint Medical, a company is doing clinical studies of Vagus nerve stimulation to treat Rheumatoid Arthritis and Crohn’s disease based on research done at the Feinstein Institute.

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 other’s 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 share the news of 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. I do not have information as to when bioelectronic medicine will be approved by the FDA and available for public use. My mission is to share my story in order to further expand resources for research of bioelectronic medicine and advance access.

 

SO, WHAT DOES THE VAGUS NERVE DO?

Dr. Kevin J Tracey says that the Vagus nerve is like the “transatlantic undersea cable” of the body, carrying tens of thousands of individual wires to all the organs of the body. The wires (nerves) control the activity of cells in each organ. When the Vagus Nerve is electrically stimulated (because for people like me, mine was snoozin’ on the job), it causes an electrical reaction that soon becomes a chemical reaction in the spleen, which then turns the production of excess inflammation off.

Click the link below to view Dr. Tracey’s Ted Talk:

https://www.youtube.com/watch?v=AJH9KsMKi5M

 

WHO IS RUNNING THE TRIALS?

SetPoint Medical

 

WHO DID THE RESEARCH?

Dr. Kevin Tracey and his team at the Feinstein Institute in Manhasset, NY

 

HOW DID YOU FIND OUT ABOUT IT?

Back in 2014, I was living in Hawaii and not in feelin’ so hot with my inflammatory arthritis. One night while procrastinating from grading papers, I came across a Huffington Post Live interview with Dr. Tracey. I contacted him immediately to ask for more information and followed his work ever since.

 

ARE THERE ANY SIDE EFFECTS?

After surgery, my voice was very quiet for a few weeks. It didn’t happen immediately — I had my voice for about two days after surgery, and then it slowly got quieter and was caused by my vocal chords being in temporarily in ‘shock’ from the surgery. I had to really push my voice to be able to be heard. Other than that, the stimulation itself hasn’t given me any negative side effects, but I cannot speak to the experiences of others. 

 

WHAT IS YOUR EXACT DIAGNOSIS?

Crohn’s disease with seronegative enteropathic arthritis, extraintestinal manifestations of pyoderma gangrenosum, Fibromyalgia, and Osteoporosis.

 

WHAT MEDICATIONS HAVE YOU TRIED?

I’ve been 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 now, I’ve never been in remission. I’ve been on 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 for too long, if at all.

My body always built up antibodies against everything.

On top of that, I tried every alternative and holistic therapy and nutrition plan that I could find, from Turmeric to meditation to Whole30 to veganism to paleo to the Specific Carb Diet and everything in-between.

 

WHAT MEDICATIONS ARE YOU ON NOW?

NONE! 

 

ARE YOU HBLA-27 POSITIVE?

No.

 

IS IT TOO LATE TO JOIN THIS TRIAL?

Yes, but I encourage you to check in with clinicaltrials.gov every week and type “Vagus Nerve Stimulation” into the search bar to see if there are other trials happening around the world. I cannot give any information on behalf of this trial’s future or any other trial.

 

IS IT APPROVED BY THE FDA YET?

It is only approved for epilepsy and depression at this time.

 

WHAT IS TRANSCUTANEOUS VAGUS NERVE STIMULATION? 

I have never used Transcutaneous VNS, but I have been told that it helps many people suffering from chronic pain. I cannot answer any questions regarding how it works if insurance covers the device, or anything else. Talk to your doctors about whether or not you should try it.       

 

WHAT CONDITIONS HAVE THE POTENTIAL TO BE TREATED BY VNS?

The possibilities are endless. Vagus Nerve Stimulation has the potential to treat everything from depression and epilepsy to Rheumatoid Arthritis and Crohn’s to Traumatic Brain Injury, MS, and more. Further, the Feinstein Institute was just given a grant to develop a bioelectronic Pancreas to treat Diabetes. It’s really fascinating what bioelectronic researchers are discovering in this new field of medicine! 

 

WHERE CAN I FIND MORE INFO?

Dr. Tracey’s Ted Talk

https://www.youtube.com/watch?v=AJH9KsMKi5M

Feinstein Institute (research)

http://www.feinsteininstitute.org/programs-researchers/bioelectronic-medicine/

SetPoint Medical (clinical trials)

https://setpointmedical.com/

*THERE IS A TRIAL IN THE U.S. RECRUITING RIGHT NOW FOR PATIENTS WITH RHEUMATOID ARTHRITIS. Contact SetPoint for more info.

 

HOW DID YOU AFFORD TO PARTAKE IN A CLINICAL TRIAL IN AMSTERDAM?

We sold everything that wasn’t nailed to the floor and our community came together and fundraised to make it possible.

 

ALSO — WHO IS MURPH?

Murph is my Vagus Nerve Implant. Her (yes, her) name is inspired by the movie “Interstellar”, where Cooper’s character describes how Murphy’s Law isn’t what it’s thought to be — it usually is thought to mean that “anything that can go wrong, will,” but he says that what it really means is that “Anything that can happen, will happen.” That seemed to fit.