I thought I would put together a little video of my top five tips that can help you get started on Disulfiram. I’m going to use this blog post to just dig a bit deeper in depth on each tip than I do in the video, plus some people prefer to read than watch!
First and foremost, start with a low dose! When doctors first started prescribing Disulfiram they were unsure what dose to use so they decided to use the same dosage alcoholics use and that is 500mg. Unfortunately Lyme patients have several systems in their body that are compromised, especially the nervous system so we can’t use the same dose a “healthy” alcoholic can. As more of us have become guinea pigs, doctors are realizing some patients need to start with as low as 10mg once a week. Most of the horror stories I have read are from people that started with a high dose and instantly started suffering from severe neuropathy or other intense side effects. Even starting off with 62.5 mg every three days was diffficult for me and when we bumped up the dose to every other day, I started having seizures. Take your time, allow your body to adapt, and then increase the dose. If you are having strong reactions, skip the next dose until you gather your strength again. This is not a race! We have all been suffering for quite some time so be gentle and take it slow.
Enteric capsules prevent neuropathy! Disulfiram binds with copper in the stomach and forms a complex that goes to the brain and causes severe neuropathy. I already have neuropathy and a damaged myelin sheath from Guillain Barre Syndrome so this was a major concern for me. The average diet includes about 2mg of copper a day. While using disulfiram it is recommended to only ingest 1 mg a day. My normal diet contains a lot of the copper foods - avocado, nuts, beans, sweet potato, etc. Once I went gluten free and dairy free, plus limiting the acetaldehyde forming foods, fermented foods, and copper foods - I wasn’t left with much! The first two doses I took, I immediately had neuropathy and nerves tingling for about an hour after taking the medication so I quickly hopped on Amazon and ordered the enteric capsules. The third dose went into an enteric capsule and there were no nerve tingles or neuropathy after. I’m still slowly introducing copper foods back into my diet and nothing has triggered neuropathy yet.
Disulfiram makes most people sleepy so use that to your advantage! I had to laugh when I watched the video because you can hear Bodhi snoring in the background as I’m talking about sleep 😴 Take it at night so you can sleep better and let it assimilate while you sleep. I take it early at 6pm so it has as much time to sink in and I hope to wake up fresh in the morning. I was really dragging my wagon during the day when I took it in the morning so this felt like a huge game changer when I switched to night time.
Feel free to experiment, especially if you are at a low dose. Everyone is so different and I have read stories of people not having to make any lifestyle changes, some people are still consuming vinegar and different foods that are supposed to interact with the medicine, but then there are also people reacting to every little thing you can imagine. You have to see what works best for you! I tend to be very sensitive to medications so I felt like I had to be super careful but as time goes on I am trying more and more without repercussions. But I am only on 31.5 mg in liposomal form so please factor your dosage into your experimentation. If I had to do it all over again, I probably wouldn’t cut anything out at the beginning and would just live life normally and cut things out as necessary.
On that note, don’t let the fear overwhelm you. The reason I did a drastic overhaul on my lifestyle was because of the fear social media inflicted on me. My doctor only said I had to cut out alcohol and actually gave me a supplement with the ingredient ethanol in it and said it shouldn’t be an issue. It was only the Facebook groups that were overwhelming with all the side effects and horror stories that scared the crap out of me. I actually cancelled all my clients the first day I took the medication because the fear was so overwhelming of what the first dose would do. Guess what? All I did was feel very sleepy for a day. I am not saying this has been an easy road, it has been a roller coaster! But life with Lyme is like that.
Overall this medication isn’t really that different than most of the other protocols you have probably been on. Yes there are some crazy side effects and drug interactions but if you start slow, use enteric capsules, take it at night, and experiment lightly with your food and beauty products, I don’t think you will have a horror story to share. I hope this helps! Please feel free to leave any helpful tips in the comments ☺️