I used ChatGPT to transform my health. Here are my tips for you.
Sarcoidosis patient DeeAnna Merz Nagel's always been empowered and informed. When her symptoms worsened this year she upped her game—and succeeded.
Guest post by DeeAnna Merz Nagel. This month on LinkedIn I spotted her talking about her AI use and invited her to share it more broadly. It’s so important for the world to realize how radically empowering it can be when patients use generative AI—empowered to pursue our own goals, in partnership with (or autonomously from) their clinicians.
I’ve always been someone who takes charge of my health. Many years ago, I became one of the first e-patients, navigating a complex diagnosis—sarcoidosis—without much help from the medical community. It took over a year of relentless research, including online bulletin boards and groups, doctor visits, and self-advocacy to finally land on a diagnosis. But this year when things got worse I had something new in my toolkit—ChatGPT, an advanced AI that I decided to put to the test.
My Health History: Driving My Own Diagnosis
I was one of the first e-patients. I was nearly incapacitated in 2000 by a mysterious lung disease. My medical journey was a frustrating maze of specialists, each baffled by my symptoms, while I grew sicker and sicker.
I eventually discovered an online forum for lung disorders, where I found a disease that matched my symptoms—sarcoidosis—and learned about the tests that would confirm it. Armed with this knowledge, I went to my doctor and requested those specific tests. He was skeptical, even patronizing, but agreed. The tests confirmed what I suspected: I had sarcoidosis. And in the 25 years since, I have had to be my own patient advocate, utilizing the internet as the disease progressed and became more systemic.
Turning to ChatGPT for answers
Months ago, as my symptoms worsened, I found myself in a familiar position—seeking answers that traditional medicine struggled to provide. I had already researched issues like gut-brain connection, systemic inflammation, food sensitivities and the like. I was seeking intervention that was least restrictive with as few procedures and medications as possible. This time, I turned to ChatGPT.
I didn’t just ask random questions. I was methodical. My background as a rehabilitation counselor and case manager allowed me the skills necessary to literally treat my own health like I was sleuthing solutions for a client. Here’s what I did; you can use it as a guide:
I Provided My History: I shared my symptoms, known diagnoses (sarcoidosis, pulmonary fibrosis, and bronchiectasis), and test results.
I Was Clear About My Goals: I told it I wanted to reduce inflammation, minimize histamine reactions, and improve my overall well-being.
I Asked Targeted Questions: From dietary adjustments to high-protein, low-histamine foods I could tolerate, I refined my questions in extended conversations until I got useful insights: “What do you mean by X?” “Say more about Y.”
What I Asked ChatGPT About
Developing an Anti-Inflammatory, Plant-Based Diet: I asked how I could reduce inflammation without triggering my many food sensitivities—nightshades, dairy, seafood, soy, MSG, and more. I sought high-protein, low-histamine options that fit within a plant-based approach. I also asked for clarification on which foods were naturally low in histamines and oxalates.
Tracking Symptoms and Correlating with Foods: I asked how to identify which foods were triggering my symptoms—dizziness, vertigo, rashes, and digestive issues. I wanted a way to track and correlate these symptoms with specific foods, leading me to develop a running log of what I ate, along with symptom patterns.
Framing Better Questions for My Doctors: I wanted to make my doctor appointments more productive. I asked GPT for guidance on how to phrase my questions, and it helped me refine my approach—turning vague complaints into clear, actionable questions.
Gaining Greater Confidence in Managing My Health: I asked how I could balance protein and low-histamine foods, what substitutions I could make, and whether my symptoms were purely vestibular or inflammation-driven. With these insights, I began seeing myself as a detective of my own health rather than a passive patient.
Examples of Specific Questions I Asked:
“How can I best balance protein and low-histamine foods?”
“If this food triggers a reaction, what could I replace it with?”
“Is my dizziness purely vestibular, or is it inflammation-driven?”
“Can inflammation cause low blood oxygen and lung congestion?”
What Changed When I Did This?
ChatGPT didn’t replace my doctors, but it became a powerful tool in my health journey. It helped me develop an anti-inflammatory, plant-based diet that worked for my sensitivities. Because I had already benefited through the years by eliminating certain foods from my diet, I already knew that Lifestyle Medicine was a potential solid track for me. I no longer viewed my sarcoidosis diagnosis as a primary interstitial lung disease; I knew sarcoidosis was an autoimmune disorder and affected my overall health.
When I approached it with my history and what I was now seeking, I was able to:
Track my symptoms and correlate them with foods, discovering that some triggers weren’t obvious. ChatGPT asked, based on my questions, if I wanted to track food sensitivities via a chart.
Frame better questions for my doctors, ensuring more productive appointments. In fact it suggested the idea! “Would you like a list of questions to consider asking at your next appointment?”
Gain greater confidence in managing my health.
Sarcoidosis is never over, but today my symptoms that had worsened this year are much improved:
Inflammation is down
My chest congestion, wheezing, heart palpitations, headaches, dizziness and low blood oxygen are much improved.
I’d been rapidly losing weight, and getting my diet regulated has stabilized it.
My issues related to vestibular migraines (light sensitivity and vertigo) remain but I continue to discuss with ChatGPT and follow up on current suggestions—different lighting, specific prescription glasses for the issue, etc.
Practical tips for others
I learned a lot as I worked through this process over a period of months.
Be Clear About Your History: Like anyone doing any job, an AI will do better if it’s better informed. So share your symptoms, diagnoses, and test results for context. Include your own subjective experience too—anything you’d want a doctor to know. Speak to it in plain English—it’s trained to understand.
Refine Your Questions: Don’t just ask general questions—get specific.
Use ChatGPT as a Guide, Not a Doctor: Cross-check suggestions with credible sources or your healthcare provider.
What I’d like more of
In case any AI developers are watching, here’s what would help me even more:
Read my health data directly, so I don’t have to paste it in. I know this isn’t technically feasible yet, but it sure would make my work easier, especially for less technical patients.
Integrate all my medical records into a separate (HIPAA compliant) file.
Give potential differential diagnoses without specifically asking. This could help the patient ask additional questions of the doctor to rule out other concerns.
ChatGPT is not a magic wand, but when used thoughtfully, it can be a powerful ally. For me, it has become an essential tool in my ongoing quest for better health.
Thanks again to DeeAnna for sharing this, especially the specifics of how she used it.
A pre-AI version of her disease story, and her empowerment, was published in 2013 (PDF) by Jan Oldenburg, author of the books Engage! and Participatory Healthcare.
Do you have a #PatientsUseAI story to share?
Let me know at dave@epatientdave.com. Put something like “Patients Use AI” in the subject line.
Another glowing example of patient participatory health. We are coming to change the practice of medicine and healthcare.
Patient motivation of having ample time and aligned intentions + comprehensive data + AI = Consumer Autonomy. The precipice of the new era a precision medicine and biological understanding is hear.