top of page
Search

Iatrogenic Botulism: Start Here

  • Megan McCue
  • Feb 27
  • 14 min read

Updated: Apr 30




I put this information together for people who suspect that they are suffering from Iatrogenic botulism following Botox/Xeomin/Dysport/etc injections. I suggest you read through this post in full. You can contact me anytime if you have questions: metoxpretty@gmail.com


PLEASE NOTE: This is a working document and will be updated regularly to reflect the latest research. None of this is medical advice. Work with your primary care doctor to determine the best medications and/or supplements for your unique health situation


Contents:



WHAT IS IATROGENIC BOTULISM?


Iatrogenic botulism is botulism that occurs following botulinum toxin injection (brands include Botox, Dysport, Xeomin, Daxxify, Jeuveau, etc.). Botulism occurs when botulinum toxin spreads into our nervous systems (either via the bloodstream or retrograde axonal transport) and begins attacking our peripheral and central nervous systems. It occurs on a spectrum, depending on how much toxin has entered the nervous system and which nerves it attacks. Botulism can present in mild, moderate, and severe forms. Botulism symptoms occurred in about 1-5% or more of clinical trial patients receiving therapeutic doses of Botox (and other brands, depending on the injection site). The incidence rate is unknown for cosmetic doses.


The Black Box Warning on all botulinum toxin products states the following: 


WARNING: DISTANT SPREAD OF TOXIN EFFECT See full prescribing information for complete boxed warning. The effects of BOTOX and all botulinum toxin products may spread from the area of injection to produce symptoms consistent with botulinum toxin effects. These symptoms have been reported hours to weeks after injection. Swallowing and breathing difficulties can be life threatening and there have been reports of death. The risk of symptoms is probably greatest in children treated for spasticity but symptoms can also occur in adults, particularly in those patients who have an underlying condition that would predispose them to these symptoms


Toxin spread can happen one of three ways:

  • through (unintentional) injection into a blood vessel

  • through diffusion of the toxin into adjacent muscle tissue (this can happen on its own, or when the toxin is "massaged" or disrupted)

  • through retrograde axonal transport, where the toxin “hops” backwards along nerve cells into the CNS (brain). 


Bai and colleagues (2018) noted the following symptoms as occurring in the following three categories (please note: this is NOT a complete list of potential symptoms from botulism):


  • Mild botulism: headaches, dizziness, fatigue, blurry vision, anxiety, difficulty swallowing, insomnia, dysarthria (slurred speech), constipation

  • Moderate botulism: any of the above characteristics with aspiration occurring with dysphagia (need for feeding tube)

  • Severe botulism: any of the above characteristics with need for mechanical ventilation



PLEASE NOTE:

It can be overwhelming and distressing to learn that you might be experiencing botulism symptoms from botulinum toxin injections. Please know that likely, many hundreds of thousands of people have been in your exact shoes since 1989 (when Botox was first brought to market). There have been over 15,000 serious adverse effects reported to the FDA FAERS database following botulinum toxin injections; based on research of reporting systems like FAERS, we know that this is likely only about 2-10% of actual events experienced in the real world, due to the persistent problem of underreporting.


After reading through hundreds of stories of fellow iatrogenic botulism sufferers, I learned that the majority of people who have “mild” botulism report healing either completely or to a tolerable "new norm" within 6-24 months. Unfortunately, in the cases of more moderate to severe botulism, the body can take years to heal. Some botulism victims report being left with permanent damage or new medical conditions that can be triggered by the toxin (like MCAS), but most return to a new tolerable norm. The body continues to heal as time goes by.


In one study that looked at long term outcomes in foodborne botulism victims, they have found that the following symptoms improve the fastest:


  • Difficulty swallowing

  • Difficulty speaking

  • Double vision

  • Limb paralysis/weakness


Whereas, the symptoms listed below were more likely to still be present at 24 months post-poisoning:


  • Mental Fatigue/brain fog

  • Dry mouth

  • Muscle weakness/Shortness of breath after physical exertion

  • Eyesight issues besides double vision, light sensitivity



ANXIETY/PANIC ATTACKS?!

Anxiety and/or panic attacks are typically one of the very first signs of systemic toxin spread, due to autonomic nervous system disruption that can affect the parasympathetic nervous system. The body usually goes through a period of intense anxiety, insomnia, and fatigue in the first few months of the disease, which can be frightening and debilitating. I personally had near daily anxiety/panic attacks for about 2 months post-injections. For most people the extreme anxiety and insomnia subsides within 3-4 months post injections. Please hang in there and know that you are not alone. Seek support and mental health resources as needed.


IF YOU ARE WITHIN THE FIRST 3 WEEKS POST-INJECTIONS AND ARE EXPERIENCING BOTULISM SYMPTOMS…

It is recommended that you seek medical attention right away. ER doctors can contact your state health department and/or the CDC to obtain botulinum antitoxin, which cannot undo any damage the toxin has done, but can prevent further damage from occurring.


NOTE: It has proven to be VERY difficult to obtain this medication for most, as typically state health departments reserve antitoxin for people who are experiencing descending paralysis and/or respiratory failure. There is no objective test for botulism besides the bioassay mouse test, which is only available via the CDC, and is only accurate in the first few days post-poisoning.


I recommend arriving at the ER armed with ample evidence and someone to help you advocate for yourself. You can print out pages 49-52 of the Botox product insert, which include a full botulism warning:


You can also bring a document on Botox Adverse Effects I put together for doctors: https://www.iatrogenicbotulism.com/post/botox-adverse-effects-pdf


ER Doctors can call the following number to reach the CDC Emergency Operations Center to request antitoxin: 770-488-7100



IF YOU ARE PAST THE FIRST 3 WEEKS POST-INJECTIONS…

Unfortunately, it is unlikely that antitoxin will be effective. This is the situation most of us find ourselves in, and we are left with little support from the medical community while our bodies do their best to heal from this poisonous toxin. Please know that many people have been in your situation, and we are here to support you. There are nearly a dozen support groups on Facebook that have tens of thousands of members who have lived through botulism and can help answer questions you have. The support group I started is here:


Always work closely with a trusted healthcare provider as you are in the process of healing from botulism.


NEXT STEPS:


  1. It is imperative to educate yourself and your physician on Things to Avoid if you suspect you have botulism from Botox. Much of botulism healing is a waiting game, while in the meantime avoiding procedures/drugs that may worsen symptoms. This is a list of drugs/procedures that have been documented (either through the Botox package insert, medical research, or firsthand experience of fellow botulism sufferers) to cause a worsening of symptoms and/or further spread of the toxin. https://www.iatrogenicbotulism.com/post/botulism-don-ts


  1. Report ALL of your symptoms to your Injector/Doctor ASAP, and request that they report them in full to the FDA FAERS database (or the appropriate reporting system in your country). This will help the FDA have accurate numbers on how often these adverse effects are occurring. (https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program)


    I have made a PDF of Botox Adverse Effects that you can print out and bring to any doctors: https://www.iatrogenicbotulism.com/post/botox-adverse-effects-pdf


    You can also print out Dr. Hristova’s research on Iatrogenic Botulism cases for your injector/primary care doctor: https://austinpublishinggroup.com/bacteriology/fulltext/bacteriology-v3-id1035.php


    The vast majority of doctors and injectors are NOT aware of or educated on Botox’s adverse effects and the nuances of mild botulism. This can lead to sufferers being dismissed and told that they are "fine", when they are in fact suffering from one of the most horrific diseases known to mankind and trying to seek medical attention and answers. I used my botulism journey as an opportunity to educate my primary care doctor and injector. Stand firm while advocating for yourself (or find a family member/friend who can advocate for you). Botox's own package insert contains warnings about many of the side effects you may experience, and can be found here: https://www.rxabbvie.com/pdf/botox_pi.pdf

    (see pages 14-15, 24-25, and 49-52)


    Drugs.com is also a great resource to send medical professionals to: https://www.drugs.com/sfx/botox-side-effects.html


    Please email me if you are seeking research articles related to a specific Botox adverse effect, and I will do my best to find you one: metoxpretty@gmail.com


  1. Report your symptoms to the FDA/FAERS database if your doctor refuses to do it (like mine did). It shouldn't take more than 10 minutes: (https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program)


  2. Keep a detailed log of your symptoms, as well as onset dates. You will need this information when reporting your symptoms to the FDA.


  3. Get as much family/friend and mental health support as possible. Botulism is usually a long-haul journey, and you will have good and bad days (symptoms can come and go for many months, if not years, but they will improve with time). You will need emotional and physical support on the bad days.


  4. As much as you can, eat a whole foods, organic diet. In one study, about 62% of iatrogenic botulism sufferers experienced MCAS/Histamine intolerances after poisoning, which can lead to allergic-type reactions to high histamine foods and personal care products. If you think you may be having these reactions (itchiness, scratchy throat, hives, breathing difficulty, etc), please visit our page on Botulism and MCAS


  5. Get as much sleep as possible. The cycle of fatigue during the day and insomnia at night is a huge issue for us IB folks in the first few months. Do not despair, and just do the best you can to sleep whenever you can. The insomnia WILL get better with time as your nervous system begins to heal. I had to take very small amounts (.1-.25 mg) of Lorazepam for a few weeks in order to sleep. I am not recommending this medication at all, but just letting you know that this is the unfortunate situation some of us find ourselves in. Other natural supplements that helped me are Luna Sleep supplement (on Amazon) and Protekt Rest supplement.


    PLEASE NOTE: SSRIs and antipsychotics have caused a worsening of symptoms for many, however some sufferers have found medications that work well for them. Never stop taking a medication you are on or begin a new medication without the guidance of a trusted healthcare provider. View the list of Things to Avoid (above in #1) to see what has caused a worsening of symptoms for others, and which pharmaceuticals interact with Botox.


  6. Eliminate toxins from your lifestyle as much as possible. This includes artificial fragrances, processed foods, toxic beauty products, toxic people, unnecessary stress, etc. Less is more; I would not recommend introducing new products into your life in the first 3-6 months post-injections while your body is on overdrive trying to return to homeostasis. I included a post on things I believe helped me heal here: https://www.iatrogenicbotulism.com/post/healing-from-botulism


  7. Be EXTREMELY wary of anyone who claims they can “cure” or “treat” botulism - there are no quick fixes or cures for botulism except antitoxin, which cannot undo damage that has already occurred. Don’t get me wrong here - I usually love alternative health and incorporate it into my life often. Botulism is a unique disease that does NOT respond to many alternative treatments in the same way that mold or other bacteria/viruses might. Botulinum toxin causes irreversible damage to our nerve synapses, typically within hours to days after exposure. Our body will REGROW new nerve synapses around the permanently damaged ones in the months/years following injections, which is why we do our best to support our bodies through healthy lifestyle/foods while it is healing.


  8. Many online Botox support groups will suggest that you should immediately start taking copper supplements and celery juice in order to improve your botulism symptoms. While these are unlikely to cause harm, there is not sufficient scientific evidence at this time to guarantee that they will help, either. I want to be realistic about what scientific evidence has shown these supplements can do, rather than giving people false hope.

    Here is a summary of the scientific studies those recommendations are based on:


    In one study, copper was shown to neutralize botulinum toxin when given intravenously to mice who had been poisoned by BoNT. The researchers noted that the copper would need to be given alongside antitoxin if it were to be trialed on botulism victims. The mice in the study who received copper via IV lived longer than the ones who didn't, but they still died of botulism.

    This study looked at oral copper and zinc supplementation on rats who were injected intramuscularly with BoNT. They concluded that the equivalent of 2 mg of oral copper, given immediately after injection and for one week after, reduced muscle atrophy after BoNT injections, while zinc supplementation increased muscle atrophy. It is unknown whether or not the oral copper could prevent the toxin from spreading to other parts of the body, and thus improve botulism symptoms. This study only measured copper's effect on BoNT activity at the neuromuscular junction (this is a very different scenario than systemic botulism, when the toxin begins attacking nerve-to-nerve synapses).


    Remember: nothing can "undo" botulinum toxin's effects on nerve synapses. The body will regrow new nerve synapses around the permanently damaged ones in the months after poisoning.


    If you choose to take oral copper supplements (it will not be able to undo any damage that has already occurred), please alert your trusted healthcare provider, and be aware that copper can cause stomach pain. Ensure that you are getting regular tests for blood levels of copper; copper overdose is a real thing, especially for women who have copper IUDs.


    Celery juice (which was recommended in Hristova's study) is unlikely to hurt anything other than your wallet, but it is high in oxalates and thus would NOT be ideal for anyone with underlying kidney issues.


    I personally did not take copper or celery juice, and my body still healed all the same within 6-9 months. I have read through hundreds of anecdotes; some people swear by these supplements, others had a worsening of symptoms after taking them. Do not start any new supplement regimen without informing and seeking the advice of a trusted healthcare provider.


  9. I wrote a post about things that I believe helped my body heal: https://www.iatrogenicbotulism.com/post/healing-from-botulism



BOTULISM SYMPTOMS:

A (mostly) complete list of potential Botox adverse effects (ie: botulism symptoms) is below. People can have 1, 5, 10, or 15 or more botulism symptoms, depending on where the toxin "lands" in their bodies once it spreads. This list is not intended to scare you, so please do not read through this list until you are in a good mental space. It would be wise to have a trusted, loving partner and/or family member or friend read through them first.


Central Nervous System:

BoNT (botox) can and does cross the blood-brain barrier, with the ability to enter the CNS and block neurotransmitters that are involved in cognitive processes, including glutamate, GABA, dopamine, and serotonin (this is why SSRIs can be an issue for botulism patients). Symptoms may include:


Brain fog, disorganization, short term memory loss, word finding difficulties, slow processing speed, phonophobia (aversion to loud noises/large crowds) and photophobia (aversion to bright lights), mental fatigue


Psychiatric symptoms:

Anxiety and/or panic attacks, depression, mood swings, depersonalization, derealization, feeling hopeless and fixated on the symptoms, suicidal ideation


Peripheral Nervous System (which includes sensory neurons):

Paresthesias (pins and needles feeling), muscle weakness/paralysis, nerve pain, burning sensations in the mouth/head/limbs, “buzzing” feeling in the nerves, nerve “zaps”, itching sensations, choking sensations


PNS - Autonomic Nervous System (including the cranial nerves):

Dizziness and nausea, blurry vision and other vision impairments, dry eyes, dry mouth, dysphagia (difficulty swallowing), dyspnea (difficulty breathing), dysarthria (slurred speech), dysphonia (hoarse voice), appetite loss/weight loss, UTIs/urinary retention, constipation/gastroparesis, insomnia, ear disorders (congestion, tinnitus, pain, deafness), heart palpitations/arrhythmias/chest pain and pressure/cardiac arrest, nausea/vomiting, abdominal pain, night sweats


Other:

Swollen glands, Alopecia (hair loss) and madarosis (loss of eyebrows and eyelashes), loss of libido, itchy skin, menstruation changes in women, loss of muscle mass, changes in skin texture/moistness


In addition to the above symptoms, the following have been reported in Dr. Hristova’s research and the FDA post-marketing reporting system: new onset of autoimmune conditions (particularly hypo and hyper thyroid symptoms), histamine intolerances/MCAS (about 62% of Hristova's patients developed new onsets of MCAS), POTS, and neurodegenerative diseases


WHAT BOTULISM LOOKED LIKE FOR ME:

I wanted to share my experience with iatrogenic botulism, to give an example of what botulism can look like. It's important to note that botulism can look very different for different people. I had a VERY mild case of botulism (and yet it still upended my life for a good number of months), likely due to the fact that I only had 12 units of Xeomin (Botox) once.

Here's what my symptoms looked like:


July 9th - date of injections; immediate head pressure, brain fog, difficulty concentrating. Some mild feelings of anxiety; 2 hours after injections I became dizzy and nauseous


July 10-13th - bloodshot eyes


July 13th - anxiety rushes began coming every few days - felt like I had drank 16 cups of coffee and couldn't get my body to settle down


July 16th - began losing copious amounts of hair with each shower, continued for about 4 months


July 20-30th ish - neck muscle weakness (heavy head that would tilt)


August 6-13th - continued brain fog and anxiety rushes, odd neurological sensations, feeling "out of it", insomnia began


August 13th - sudden onset of extreme dry mouth and difficulty triggering swallowing muscles - feelings would come and go


August 13-20th - panic/anxiety attacks continued, became more frequent


August 20th - dry mouth became constant, difficulty swallowing solid foods; feelings of "globus" (food feeling stuck) would happen with solid foods


August 20-Oct 10 - constant fatigue during the day and insomnia at night; brain fog, difficulty concentrating and following along in conversations; weird "nerve zaps" occasionally at night; could not work and had to take small amounts of Lorazepam to sleep


September 16th - ear congestion began; this lasted for 4 months


September 19th - panic/anxiety ended


October 11th - saliva production resumed (at least to about 30-40% of its norm, my mouth remains very dry at 8 months out)


October-December - brain fog cleared up; sinus pressure and difficulty breathing (involuntary arrest of diaphragm for a second at a time) would come for a few days around each monthly cycle


I turned a healing corner around the end of December/early January.


At 9 months out, I consider myself completely healed. I take precautions to avoid potential relapses, including avoiding caffeine/alcohol; I also limit my sugar intake.



THE BOTTOM LINE:

Botulism of any kind (foodborne, wound, iatrogenic, etc.) is a debilitating and harrowing disease. It is essentially severe nervous system disruption, and it renders most of its victims incapable of participating in life as they know it for extended periods of time. Many of us who end up with the disease after Botox injections were NEVER appropriately warned about the risks of developing this disease. There is extremely limited information on this illness, as well as things that can possibly help improve outcomes for patients.


The most important thing to know is that many hundreds of thousands of people have been harmed by Botox and have survived. Life may look a bit different, as we may have to avoid certain triggering medications, foods, activites, etc., especially in the first few years post-poisoning, but there is hope for all of us.


Please do not hesitate to reach out if you have any questions about or suggestions for this document: metoxpretty@gmail.com



References: 


Bai L, Peng X, Liu Y, Sun Y, Wang X, Wang X, Lin G, Zhang P, Wan K, Qiu Z. Clinical analysis of 86 botulism cases caused by cosmetic injection of botulinum toxin (BoNT). Medicine (Baltimore). 2018 Aug;97(34):e10659. doi: 10.1097/MD.0000000000010659. PMID: 30142749; PMCID: PMC6112997.




Fung HT, Chan KM, Lam SKT. A review on iatrogenic botulism. Hong Kong Journal of Emergency Medicine. 2020;27(6):356-367. doi:10.1177/1024907920934901


Hristova, AH. Lenore, J. Swati, S., Wade, J.

Severe Nervous System Complications After Botulinum Type A Therapy: Three Case Reports With Reviews of FDA-Reported Nervous System Adverse Effects, PM&R, Volume 4, Issue 8, 2012, Pages 613-623,

ISSN 1934-1482,


Hristova, AH. “Impaired Neuronal Communication Syndrome (INCS) as Novel Neurological Side Effect to Botulinum Toxin Type A Therapy with 16 Case Reports.” 2016.


Luvisetto S. Botulinum Neurotoxins in Central Nervous System: An Overview from Animal Models to Human Therapy. Toxins (Basel). 2021 Oct 22;13(11):751. doi: 10.3390/toxins13110751. PMID: 34822535; PMCID: PMC8622321.


Mann JM, Martin S, Hoffman R, Marrazzo S. Patient recovery from type A botulism: morbidity assessment following a large outbreak. Am J Public Health. 1981 Mar;71(3):266-9. doi: 10.2105/ajph.71.3.266. PMID: 7468858; PMCID: PMC1619789.



Zargaran D, Zargaran A, Sousi S, Knight D, Cook H, Woollard A, Davies J, Weyrich T, Mosahebi A. Quantitative and qualitative analysis of individual experiences post botulinum toxin injection - United Kingdom Survey. Skin Health Dis. 2023 Jul 3;3(5):e265. doi: 10.1002/ski2.265. PMID: 37799369; PMCID: PMC10549845.


 
 
 

Commenti

metoxpretty@gmail.com

​

© 2025 by Megan McCue. All rights reserved.

None of the information listed on this website is medical advice. It is not intended to diagnose, treat, or cure any disease.

Work with a trusted healthcare provider before beginning any new medications or supplements.

bottom of page