Guest Post: Healing MCAS After Botulism by Joelle Murray

Joelle developed MCAS after Botox in 2024

When I developed botulism from cosmetic Botox, it sent my entire body into a meltdown I didn’t know was possible. My mast cells became hyperreactive, my breathing felt suffocated, my nervous system was stuck in fight or flight, and the simplest things—walking, eating, smelling perfume—suddenly became threats.

The Study That Haunted Me and the Turning Point That Saved Me

Somewhere in those early months when my body felt like it was unraveling from the inside out, I stumbled on a 2016 paper that I wish I’d never found and yet desperately needed. It followed sixteen people who, after routine botulinum toxin injections, lost the ability to function normally. Their scans were clean, their labs were unremarkable, but their nervous systems were collapsing in ways medicine didn’t know how to measure.

The authors called it Impaired Neuronal Communication Syndrome (INCS), a clinical way of saying the wires were still intact, but the messages weren’t getting through. The symptoms read like a mirror of my own: muscle weakness, air hunger, autonomic instability, sensory weirdness, psychiatric shifts—an entire body that no longer belonged to itself. And the worst part wasn’t the symptoms; it was the timeline. Some of these people were still sick years later.

Then I found a second paper by Dr. Hristova, following another group of patients who suffered long-term neurological complications after Botox. That one hit even harder. Out of the sixteen patients she tracked, only 19% ever fully recovered. The other 81% remained symptomatic for years, trapped in a kind of neurological purgatory with no clear path forward. Reading that statistic was like having ice water poured down my spine. It was the first time I saw, in hard numbers, what I had already feared: many people never get their lives back after iatrogenic botulism.

It was also the first time I saw in print what my intuition already knew: this wasn’t something that would “wear off.” Yet that was all I heard—from the people who injected me, from the ER doctor who saw me at my worst, from every doctor who didn’t have anything else to offer. Three months, they said, as if the calendar alone held the cure. But Botox doesn’t fade like a stain. It disables nerve terminals, and the only real path out is regeneration: slow, unpredictable, and never guaranteed.

Sick and Alone: No One Came to Save Me

So I waited for the magic 90-day finish line, and when it arrived, I wasn’t better. I was worse.

What made everything harder was how profoundly unhelpful the medical system was and how actively dismissive my injector became. When I first reported symptoms like blurry vision and headaches, I was told they “weren’t Botox-related,” even though both are literally printed on the FDA’s own black box warning as two of the most common systemic reactions. Instead of helping, she gaslit me, minimized everything, and pretended she’d never heard of systemic spread despite the fact that the FDA explicitly warns about it.

Months later, when I contacted her office and explained what had actually happened—that I had developed full-on iatrogenic botulism—her response wasn’t concern or accountability. It was damage control. They offered me a few thousand dollars in exchange for an NDA that wouldn’t just silence me from talking about them, but from ever speaking publicly about my injury at all. I remember sitting there thinking how many people before me must have been paid into silence, and how many people after me could be harmed by that same cycle. I didn’t know Botox could do this. No one warned me. And the idea of participating in that silence felt like a betrayal to anyone else who might unknowingly walk into the same trap. So I refused their hush money. A small check wasn’t worth my voice or someone else’s safety.

No one prepared me for the nights when my breathing felt too shallow, or the mornings I woke up wondering if the toxin had crept closer to my lungs or my heart. In the United States, you don’t receive antitoxin unless you’re already in respiratory failure or cardiac arrest; essentially, unless the worst has already happened. So I lived in a kind of medical limbo: sick enough to be terrified, not sick enough to qualify for help.

Somewhere between that study and the endless dismissals, something in me hardened. I made a promise to myself. I refused to become a cautionary footnote in a case series. I refused to let a neurotoxin dictate the rest of my life.

After spending months trying to understand what had happened, I realized many of my issues were from the secondary condition I developed: Mast Cell Activation Syndrome. And healing MCAS after botulism wasn’t about chasing dozens of supplements, but about following a sequence- stabilizing, calming, repairing, and retraining. This is the exact journey that finally worked for me.

Phase 1: Stabilizing the Fire (Months 0–10)

The first ten months were about survival, not progress. I committed to a strict low-histamine diet for a year. My stabilizing stack included:

• H1 + H2 antihistamines

• High-dose vitamin C

• Quercetin 1,000 mg twice daily

• Vitamin D, with real sunlight whenever possible

• Liquid D3/K2 during fall/winter

  
  

Because my system was extremely reactive, my gut work stayed gentle:

• Marshmallow root + slippery elm tea

• Zinc carnosine

• Marine collagen (finally tolerated ~6 months in)

• Low-histamine probiotics (Seeking Health)

  
  

Movement was minimal: slow walking only, so I didn’t trigger mast cells or adrenaline surges. My anxiety remained high, my fatigue was crushing, and my nervous system felt like it was running on static electricity.

SAAT: The Treatment That Finally Shifted My System

After endlessly managing symptoms for months—and every allergist and rheumatologist telling me they don’t treat MCAS—my primary care physician shared with me that she has MCAS and wasn’t getting much help from Western medicine either. I was even referred to Stanford for them to tell me that not one department knows how to treat it.

My brilliant, thoughtful friend Megan had learned about a possible MCAS treatment, and shared it with me. It was called SAAT (Soliman Auricular Allergy Treatment), and while it is similar to acupuncture, there are a few differences. It uses frequency testing to find the exact ear point tied to the allergen pathway you’re targeting. These points connect to branches of the vagus nerve and liver pathways involved in histamine clearance.

Once the practitioner finds the correct frequency match, they place a tiny semi-permanent needle in that exact point for several weeks. The constant, low-grade signaling helps the autonomic nervous system retrain its response to that trigger.

Round 1: Too Many Needles and My System Collapsed

My first session used seven needles. It was way too much. My nervous system got overwhelmed, my anxiety spiked, and my air hunger exploded—basically a relapse of the severe air hunger I had at the start of botulism. It set me back in a way I’m still recovering from, though I’m about 95% better now.

Round 2: Fewer Needles and Everything Shifted

The second round, I only used two needles (MCAS/histamine + anxiety). The difference was dramatic:

• my anxiety vanished

• my fatigue lifted

• my chemical/fragrance sensitivity disappeared

• my air hunger improved significantly

• my whole nervous system calmed down

With SAAT, the rule seems to be: less is more, especially for MCAS bodies—and definitely post-botulism. It is an extremely powerful treatment and should be handled cautiously.

Round 3: Sprays Added to Finish Treatment

During this treatment, two sprays were added for histamine and MCAS. They are microdoses of the allergens to start introducing them to your body while also helping your body create DAO to stabilize mast cells. This round was challenging for me and I was triggered most weeks at least slightly. It wasn’t as intense as the first round, but mentally I was ready for the treatment to be done, and the sprays were uncomfortable at first.

I was unsure how much progress I had made during SAAT and whether it would work for me, but once the needles were finally out I started to feel calm and energized—basically normal. Like my body felt before I had been poisoned and my body started attacking itself. My POTS went away. I didn’t have to constantly chug electrolytes, and when I accidentally dropped and shattered a perfume bottle on my bathroom floor the next day, my immune system didn’t freak out.

Why Strict Diet Is Non-Negotiable During SAAT

If you’re being treated for MCAS or histamine intolerance and you eat high-histamine foods while the needle is in, you can actually reinforce the intolerance instead of correcting it.

The needle is trying to send a clean “this is safe” signal. If you keep consuming the trigger, you muddy the message—basically making you allergic to what you’re trying to treat. Strict avoidance during SAAT isn’t optional; it’s part of the protocol. I became much more reactive to many safe foods during the treatment, so I had to cut them out but was able to add them back once the needles were out.

Brain Retraining: The Missing Piece for MCAS

MCAS isn’t just an immune problem; it’s a brain + nervous system miscommunication problem. Your body has to interpret the world as safe before it can tolerate foods or allergens again.

Brain retraining became a part of my healing because it teaches the limbic system to stop reacting like everything is a threat. Tools people use include:

• Primal Trust

• DNRS (Dynamic Neural Retraining System)

• EFT tapping (Emotional Freedom Technique)

• Somatic vagus-nerve exercises

EFT tapping was especially helpful for me in real-life trigger situations like walking into a freshly cleaned public bathroom. It wasn’t placebo; there’s legitimate research showing it lowers cortisol and calms the amygdala.

These tools remind your brain: not everything is danger.

I also tried to remain positive and optimistic even when my diet had shrunk during treatment and I had to give up my beloved matcha. I leaned into prayer and trusted the process would lead me back to healing.

Nervous System Support: Building a Safe Baseline

SAAT only worked because my nervous system finally had a calm platform to respond from. I supported it with:

• Vagus-nerve exercise videos

• Sleeping on a grounding mat

• A clean, anti-inflammatory, low-histamine diet

  
  

Some people also use vagus-nerve stimulators, like Pulsetto or a TENS unit. I haven’t tried them yet, but many MCAS patients swear by them, and it fits the logic of calming the autonomic system.

When the nervous system shifts out of defense mode, mast cells stop acting like frantic bouncers.

POTS: The Part No One Warns You About

Before I understood what MCAS was doing to my body, the dysautonomia was the part that nearly broke me. I would come out of sleep with my heart already racing, as if I’d jolted awake from a dead sprint. My husband called the ambulance three different times because I couldn’t tell if I was having a cardiac event or simply losing control of my own physiology. The ER couldn’t tell me either. Every visit ended with some version of, “Your labs look fine,” while I felt anything but fine.

Even small shifts—lying down to sitting, sitting to standing—felt like stepping off a cliff. My vision would narrow, the room would tilt, and the familiar wave of presyncope would hit hard. This is the hallmark of POTS, but at the time, the word “autonomic” wasn’t even part of my vocabulary. I only knew something was catastrophically wrong.

What I didn’t yet understand was that my mast cells were driving the whole storm. Excess histamine causes widespread vasodilation and blood pooling. Prostaglandins and cytokines further destabilize vascular tone and irritate the vagus nerve, a key regulator of the autonomic system. MCAS doesn’t just create allergy-type symptoms; it can directly generate or amplify POTS. The physiology mapped perfectly onto what I was experiencing each morning.

The turning point came when I finally got my histamine load under control. As the mast-cell activation calmed, the autonomic chaos began to ease. Electrolytes became essential. I was consuming amounts that would look excessive for a healthy person, but dysautonomia burns through minerals quickly because of shifts in blood volume, vascular dilation, and impaired regulation. What seemed extreme from the outside was exactly what my body required to maintain stability.

Nine months after the botulism injury, I finally reached the Stanford Dysautonomia Clinic. They ran two hours of comprehensive testing: vagal reflex evaluations, a sweat test using acetylcholine, and a proper tilt-table test—the one assessment no prior doctor had ordered, despite the obvious symptoms. By then, SAAT had already started stabilizing my MCAS, so the dysautonomia was still present but no longer the unrelenting crisis it had been early on.

The contrast was stunning. Once the mast-cell activation was brought under control, the POTS that had dominated my life simply receded. It didn’t require years of beta-blockers or compression garments or salt-loading formulas; it required correcting the inflammatory driver that had been destabilizing my autonomic nervous system from the beginning.

Looking Ahead: AAT and the Next Phase of Healing

As I am beginning food reintroductions with great success, the last five days since the needles have been out I have been drinking coffee and eating chocolate and tomatoes. I am taking it slow and wanted to be sure it worked for me before sharing with others. I will not lie: it was an extremely challenging treatment that brought me down to rock bottom at times, so I’m also exploring AAT (Advanced Allergy Therapeutics).

AAT is different from SAAT; it’s gentler and fully non-invasive. The practitioner selects an allergen on a computer, uses a blood-pressure-style cuff to send a signal through the nervous system related to that specific allergen, then sends a signal down your spine to reprogram that immune response. It’s safe. There are no needles. Twenty-four hours later, you’re allowed to reintroduce that allergen. You can do one per week. I am excited about this treatment because you don’t have to restrict for long periods, it’s non-invasive, seemingly more gentle, and it can treat exercise intolerance through calming lactic acid, adrenaline, cortisol, etc.

I’ll likely experiment with AAT for any remaining sensitivities or do another SAAT round depending on how I feel. I may do one more round of SAAT to treat very specific allergies. I am a potter, so naturally the clay gets a little moldy; I will bring in a tiny piece of moldy clay to be treated for that very specific mold. Both treatments seem to have their benefits. I’m giving my body space to show me where it’s at.

Where I Am Now

Right now I’m reintroducing allergens with great success. As challenging as SAAT was, I am glad I did it and would do it again. Now that I am more stable, I will focus on introducing gut-healing foods such as homemade bone broth and sauerkraut. I will write an update in about a month with more notes on my healing. The body is made to heal, and I am so glad I never believed mainstream medicine when they told me MCAS is incurable.

Healing hasn’t been linear, but it’s been real. And for the first time since botulism, my body feels like it’s actually coming back to life.

SAAT practitioner list: https://saatallergy.com/list-of-practitioners/

AAT practitioner locator: https://advancedallergytherapeutics.com/find-an-aat-practitioner/

Joelle can be reached at joellehmurray@gmail.com

Sources & Further Reading

Botulism, Neuromuscular Recovery & Long-Term Effects

• Cherington M. Botulism: Update and Review. Seminars in Neurology. 1992;12(4):333–348.

• Sobel J. Botulism. Clinical Infectious Diseases. 2005;41(8):1167–1173.

• Peck MW, Smith TJ. Botulinum Neurotoxins in Disease and Food Safety. Current Opinion in Food Science. 2021.

• CDC. Clinical Guidelines for Botulism Treatment and Antitoxin Use. Centers for Disease Control and Prevention.

• Ghouse R et al. Iatrogenic botulism after botulinum toxin injections: case reports and review. Journal of Medical Toxicology. 2021.

INCS – Impaired Neuronal Communication Syndrome (2016 article)

• Hristova, AH. Impaired Neuronal Communication Syndrome as a Novel Neurological Side Effect to Botulinum Toxin Type A Therapy. Austin Journal of Bacteriology. 2016;3(1):1035.

Mast Cells, Histamine, and Autonomic Dysfunction

• Afrin LB, Parden D, Raveendran R. Mast Cell Activation Syndrome: Presentation, Diagnosis, and Management. Translational Research. 2016;174:171–190.

• Theoharides TC, Akin C. Mast Cells and Chronic Disease. Immunology & Allergy Clinics of North America. 2014;34(2):181–196.

• Maintz L, Novak N. Histamine and Histamine Intolerance. American Journal of Clinical Nutrition. 2007;85(5):1185–1196.

• Escribano L et al. Mast Cell Disorders in the Nervous System. Frontiers in Neuroscience. 2020.

POTS, Dysautonomia, and Vagus Nerve Involvement

• Raj SR. Postural Tachycardia Syndrome (POTS). Circulation. 2013;127(23):2336–2342.

• Goodman BP, Cheshire WP. Evaluation of Autonomic Disorders. Continuum (Neurology). 2020;26(1):108–134.

• Chavan SS, Tracey KJ. Vagus Nerve and Immune Regulation. Immunologic Research. 2017;65(1):27–35.

• Low PA. Autonomic Dysfunction in Peripheral Nerve Disease. Muscle & Nerve. 2002;26(4):442–454.

MCAS & Neuroimmune Interaction

• Weinstock LB et al. MCAS and Neuropsychiatric Manifestations. Journal of Clinical Medicine. 2020.

• Galli SJ. Mast Cells and the Brain: A Neuroimmune Interface. Annual Review of Neuroscience. 2019.

Botulinum Toxin Mechanism & Nerve Regeneration

• Rossetto O, Pirazzini M. Botulinum Neurotoxins: Mechanism of Action. Toxicon. 2017.

• Meunier FA et al. Regeneration of Nerve Terminals After Botulinum Toxin. Nature Reviews Neuroscience. 2002.

• Williamson LC et al. Recovery from Botulinum Neurotoxin Poisoning. Neurochemistry International. 1996.

Histamine, Diet & Immune Modulation

• Wagner N et al. Histamine in Food and Gut-Immune Crosstalk. Nutrients. 2020.

• Frieri M. Dietary Modulation in Mast Cell Dysfunction. Journal of Allergy & Therapy. 2018.

Brain Retraining, Cortisol & Limbic System

• Stapleton P et al. EFT Tapping Weekly Intervention Study. Journal of Nervous and Mental Disease. 2020.

• Geronimus AT. Stress, the Limbic System, and Chronic Illness. Health Psychology Review. 2017.