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If you’ve been following the blog, you know that we started the Nemechek protocol in November 2018. My daughter is awesomely autistic, in addition to having stomach issues, learning disabilites and overall developmental delays. I’ve written updates on my daughter’s progress, which started to plateau around the year-and-a-half mark. I suspect that having school closings due to COVID-19 certainly played a part in that plateau, and in some cases regression. Most notably, her speech. In any case, I knew from reading Dr. Nemechek’s book, that my daughter may require something more than over-the-counter inulin to help repair her gut. This would include a prescription for Rifaximin/Xifaxan, and/or vagus nerve stimulation.
To be transparent, I am just a parent using this protocol, and sharing how it has worked for my daughter. I am not affiliated with or compensated by Dr. Nemechek or his practice. My blog articles are my thoughts, opinions and personal observations using the protocol, and are not medical advice.
What is Xifaxan
Xifaxan (also known as Rifaximin) is medication is used to treat diarrhea caused by the common bacteria known as E. coli (“traveler’s diarrhea”). It works by stopping the growth of bacteria. This antibiotic treats only bacterial infections. Xifaxan is also used to treat irritable bowel syndrome with diarrhea. It is also used to prevent a brain problem caused by liver disease (hepatic encephalopathy), and may help with clearer thinking. In the case of the Nemechek Protocol, it reverses bacterial overgrowth in the small intestine, also known as SIBO.
It all starts with the gut
When I learned about the Nemechek protocol it resonated with me because it talked about full repair of the gut. I’ve read extensively about gut health, always believing it holds the key to her stomach issues. We’ve done the Feingold diet, Elimination Diet, which led to the Gluten and Dairy Free diet over the years. We incorporated bone broth from reading about GAPS. All helped in different ways – but never completely.
learning more about the food we eat
Through that research, I learned that there isn’t a whole lot of actual food in processed food. Grocery shopping began to include reading ingredients on food labels. We started reducing processed food intake, cooked at home more, ate at restaurants less. Farmer’s markets became a favorite Saturday morning family activity. I learned to can – and each year we make homemade jams, tomato sauce, salsa, applesauce and have even made our own jellied cranberries. Every time we make a whole chicken, I use the leftovers to make homemade soup or broth to cook with.
I’ve found that although buying fresh foods are a bit more expensive, we spend less overall because we are not spending money on processed foods, and we buy what’s in season. Additionally, I have embraced batch-cook-and-freeze-it for weeknight dinners. (I’ve also embraced Ian’s frozen gluten free fish sticks – because we all have those days.)
what made us decide to try the nemechek Protocol
So, a protocol that incorporates Extra Virgin Olive oil (EVOO) into our everyday cooking seemed almost too simple! I’d read research about positive health outcomes from the Mediterranean diet, which also incorporates healthy amounts of EVOO. The Nemechek Protocol itself is very simple and inexpensive and most certainly, I believe, worth a try. Logically, I also knew the gains we’d experienced in the past with diet changes. It’s simple design of over-the-counter ingredients of fish oil and olive oil led us down a new path.
During the first year I detail the improvements in several articles linked at the bottom of this page. By a year-and-a-half the pandemic hit, and the exponential improvement of school + the protocol turned into a goal of limited regression. The one area that we saw worsen was speech, in particular my daughter’s oral motor tic. This presents itself as getting “stuck” or difficulty starting a sentence.
Vagus Nerve Stimulation
Although the protocol can be done without a visit to Dr. Nemechek, I was interested in using VNS – Vagus Nerve Stimulation – to further my daughter’s progress. VNS uses a medical device to apply an electrical current to the vagus nerve – a nerve that runs between the brain and many areas of the body, including the heart, gastrointestinal tract, and skin. The vagus nerve has important physical and emotional effects in the body and helps the body to achieve balance between states of stress and relaxation. By applying this to the vagus nerve in the autonomic nervous system as part of the Nemechek Protocol, it helps to decrease inflammation in the body and brain. Researchers at Harvard Medical School published an article in the journal Frontiers in Neuroscience. The article is titled, “Transcutaneous Vagus Nerve Stimulation: A Promising Method for treatment of Autism Spectrum Disorders.”
Fast forward to February 2021. After a year of anticipation, it was nearly time for our office visit. A difficult decision due to the pandemic, we decide to make the trip to Arizona to meet with Dr. Nemechek. During that visit, he immediately notices her oral motor tic and her difficulty starting her expression. He told me to watch that tic after starting the Xifaxan – as that is likely a “tell” for my kiddo – when her gut is out of balance. We were also prescribed the at-home VNS medical device, which is small and plugs into a cell phone for power.
Encouraging results after just 1 week
As of this writing, my daughter had taken 7 of the 10 days of the prescribed dose, along with the daily VNS (5 minutes per day) and she is able to start a sentence without getting stuck – which means less frustration. I thought, perhaps I was biased, however her Prompt speech therapist today noticed the very same thing. My parents, who talk with her during Facetime several times per week made a point of telling me that her speech improved. I am left both amazed and enlightened.
what to expect when you visit
I’ll summarize our visit with Dr. Nemechek with one word: Hope. Both he and his wife are kind and welcoming. It is a small office where we were made to feel like people, not a number. I was most impressed with the person who checked us in, who talked with my daughter about her stuffed animal – a brightly colored parrot named “Pop Tart” – while we waited for our appointment (we arrived a bit early).
Due to COVID-19, he has a room divided by a window so that patients are able to take off masks (much to the delight of my kiddo). We talk via speaker. Dr. Nemechek allays my fears that my daughter may be too old to benefit (she’s a teen) and he quickly refuted- sharing stories of adults who have seen huge improvements after using the protocol. He broke information down into easily digestible chunks – I walked away with a great understanding of how the protocol reduces inflammation and allows the body to repair itself. Additionally, I left with a confidence in the safety of Rifaximin, and that Vagus nerve simulation was optional, but a path to exponentially improve recovery and healing.
No, i am not seeking a cure-all
I have been seeking something that would remove obstacles that my daughter faces everyday – the ones with no medical answers: Stomach issues. Motor tics impairing speech production. Learning struggles. The moments of brilliance that seem to come and go in a flash. That’s when I get angry, because I know she’s in there, just screaming to get out. I am well educated and do not lament my daughter’s neuro-difference. This protocol is not some lunatic fringe, promising a miracle cure. It’s about reducing inflammation and its effect human body and brain, slowly, over time and parents are reporting real results.
Overview of the Protocol and a Get Started Checklist: A Mom’s perspective
Nemechek Autonomic Medicine – Official website
Articles about our Nemechek Protocol Progress
1 year, 6 months
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Good news! I hope you continue to see improvements. 💕
Would be good for parents to hear how things are after more time on Rifaximin. Is your daughter on continuous? Hope all is going well.
Thanks so much for your comment. My daughter started on 10 days on/10 days off Rifaximin; she is now on continuous, which I understand will continue for 12 months. I will include more detail on this in my next update!
I wondered how your daughter was doing. My son is 21 w/ ASD. I’ve read Dr. Nemechek’s book, tried a myriad of things, now my son’s had a few seizures, so the neurologist is suggesting VNS. I wondered how that worked for you and if you used the OHA app w/ the cable. The app reviews are horrible. I figure if I buy the Vitality Smart Cable it may not work effectively if the app doesn’t work. It is refreshing to hear your experience and the update about the Rifaximin is interesting. Thank you.
Thanks for your comment! We have not had any issues with the OHA app and the cable – we did purchase it directly from Dr. N on our visit. We use the app on an older iPhone (not sure if that matters or not) I believe VNS has a calming effect on my daughter. She is sleeping much better and overall seems less anxious and her over-the-top energy has leveled out. She is also taking Rifaximin, so it’s hard to say which is helping more/less/equally. For us, I can’t say there is any downside to using the VNS (outside of the initial cost). My daughter looks forward to using it (she reminds us every night). I have used it too – and it seems to be helping my chronic heartburn!
Thank you so much for sharing your story! It is a lifeline to people just starting out this protocol! When I talked to our primary care provider, she said the Rifaxamine was more than a thousand dollars. Were you able to find it for reasonable prices?
At this time, our insurance covers part of the cost. Our hope is that soon she will only require a maintenance dose.