A couple days ago I decided to give up hope on Disulfiram being my cure for Lyme and Babesiosis. Honestly it wasn't a difficult decision to make because it was a pretty strong gut feeling, but now that the Disulfiram journey is over I have second guessed myself a little bit. People are definitely getting results on it and I came across a YouTube account this morning where a patient was giving a monthly update and you could see her getting better and better each video. I have been on it for four months and I have only gotten worse. There is a theme in the Lyme world that you "HAVE TO" feel worse before you get better. If you feel terrible then that means the medication is working! But when do you say enough is enough?
For me it's always a tough call to make. I can muscle through and persevere through quite a lot, but now that I am having seizures weekly and losing the feeling in my legs a few times a week my life is becoming more and more limited. I have an underlying level of fear behind many of life's daily activities. Driving is my biggest one - Saturday I could feel the seizures coming on from the moment I woke up but I had a health care appointment to go to and deciding whether or not to drive was a very tough call. Luckily I was able to make it round trip and had three seizures that evening after I had been home for a couple hours.
I'm not sure what the next steps of my journey will be. I have a doctor's appointment next week to go over my options and I am trying to do my own research this week so I can see what I feel is best. I am also having my acupuncturist go over her notes from the past year to see when I was doing the best and what protocol I was following at that point. With the brain fog and cognitive issues I don't have the best recollection and haven't kept the best track of things on my own. I know the Chinese Herbs are always a game changer for me so that will need to be one component of the plan but today I am going through what I call my box of desperation to see if I have anything left over from the past year that I feel like worked well. I also thought I would go through this on video so you can get a little idea of how many supplements people with chronic illness may take and the costs that can go along with them! It's a little long so feel free to increase the speed of the video in the YouTube settings - that is my life hack for getting through online content quicker!!