Important Considerations for Botulism Patients

The following is a list of important considerations for physicians who are caring for those with iatrogenic botulism.

1. Here is a full list of medications, supplements, etc., that may cause a worsening of symptoms for botulism patients: https://www.iatrogenicbotulism.com/post/botulism-don-ts

   
   

2. Botulism can cause new onsets of nutrient deficiencies, especially with the following vitamins/minerals:

   1. Vitamin D

   2. B vitamins

   3. Folate

   4. Iron/Ferritin

   5. Potassium

   It would be wise to regularly test patients for these nutrients, and to use your best judgment when recommending supplements. Be aware that those experiencing MCAS symptoms may not tolerate synthetic vitamins well.

   
   

3. Dormant viruses have reemerged after botulism in some cases, including Epstein-Barre virus and Lyme disease. If your patients have any signs of these illnesses, it would be wise to have them tested.

   
   

4. Botulism can trigger new onsets of hyper OR hypothyroidism. Patients can be regularly monitored for any changes to the thyroid.

   
   

5. Botulism symptoms can come and go for many months, and some patients may experience "relapses", that can be provoked by new medications, vaccines, or other environmental triggers, like fatigue or stress. In Dr. Hristova's study (she was the only neurologist who followed iatrogenic botulism patients for a lengthy period of time), patients experienced new symptoms for the first year after poisoning; after the first year, they did not experience any more new symptoms, however their old symptoms would come and go.

   
   

6. Many (but not all) botulism patients have experienced a worsening of symptoms with SSRIs and antipsychotics. Dr. Hristova noted that benzodiazepines were well tolerated by botulism patients she followed; however she recommended using small doses and trying to wean patients off of these medications ASAP. Because botulism can cause severe psychiatric and insomnia symptoms, many patients find relief with CNS modulators (specifically benzodiazepines) in the early weeks/months after poisoning. Use your best clinical judgment when prescribing these medications.

   
   

7. Botulinum neurotoxin can spread into both the PNS and the CNS. This is why botulism patients can experience CNS symptoms including brain fog, slow processing speed, memory loss, psychiatric symptoms, and depersonalization/derealization. These symptoms can be incredibly frightening and debilitating to live with, so please be patient with patients who are experiencing them.

   
   

8. Botulism patients may benefit from additional referrals, including those to physical therapists (for limb weakness), speech therapists (for speaking, swallowing, and/or cognitive difficulties), opthamologists (for vision disturbances), and neurologists (for testing to rule out other conditions)

   
   

9. Botulism can cause new onsets of cardiac issues, including heart arrhythmias and POTS. Please monitor your patients for these conditions.

   
   

10. The respiratory distress experienced by botulism patients typically does not result in lowered oxygen saturations - this is why many physicians think it's odd when patients complain of shortness of breath or difficulty breathing, but have perfectly fine O2 sats. Please believe your patients when they report these symptoms; they can be frightening to experience.

    
    

11. Botulism is incredibly terrifying to live through. Please be patient with your botulism patients - they are experiencing severe nervous system disruption that is truly like nothing else. It is a harrowing disease to live through, and many botulism patients would benefit from validation and a calm and caring bedside manner.