One week ago, I took my first dose of disulfiram. My doctor wants me to start slowly to see how bad the herxes are, so it’s been 62.5mg every third day, which will continue for one more week. If I can tolerate it, we’ll increase the frequency of the doses.
To be honest, I’m chomping at the bit to take more, sooner. I had to remind myself that when I started coiling, I did 30 seconds on the Lyme frequency, and the herx was so bad that I had to wait almost a week before I could do it again. With this thought in mind, I remind myself that if it takes an extra week or two at the end because we were cautious at the beginning, that’s nothing compared to the years of holding out for a cure. It also seems better than rushing into this and ending up completely incapacitated for months from a bad reaction.
I’ve stopped coiling for now. Until I get to the full dose, I don’t want to muddy the water. If at the full dose, it becomes clear that any one of the infections is not being dealt with, then I’ll start up coiling again.
The disulfiram reaction has been mild compared to many of the treatments I’ve used in the past. About a month before starting the disulfiram, I used serrapeptase, 60,000 units per day, for three days. That was unpleasant: joint pain, headache, brain fog, all piled on to the fatigue that never goes away. In fact, I’d forgotten how much pain tick-borne illnesses can cause. This very low dose of disulfiram has not yet caused quite as much trouble.
I had a mild reaction to the first dose, common to anytime I take a new drug. The reaction was excess production of mucus in my upper respiratory system. The reaction did not repeat with subsequent doses. Other than that, I couldn’t tell that I had taken anything.
After the second dose, I had one small indication of a Lyme die-off, with distinct smelling urine. These past few days, I’ve had greater heat intolerance/exercise intolerance. I get very sweaty walking slowly with the dogs, even though the weather when I take them out is about 72°F. For the first time since the beginning of May, I did not have a migraine this week. However, I’ve had some moderate headaches the past three days. After a month of loose stools, I had my first day of normal bowel movements yesterday. I’ve been too tired to do much beyond walking the dogs.
I took the third dose last night. Now I’m starting to feel it. I had a big night sweat. I woke up with tingling in my ulnar nerves and pain on the soles of my feet. Today, my headache started earlier, so I took advil. I’m having some pain in my left shoulder. Nothing major.
I have not been doing much in the way of detoxing (other than choosing vegetables that promote detoxification, such as 3/4 pound okra in one sitting) because I wanted to see what the drug is doing. Now that I can tell it is doing something, I’ll begin detoxing with lemon water and supplements as needed.
I’ve started a journal to chronicle the disulfiram experiment. The day to day is not yet exciting. But I hope to include weekly updates here for anyone who wants to learn from my experience.
It seems like a long way to go, but I’ve begun. With any luck and some decent biology, disulfiram will be a cure or at least give the chronic Lyme patients a long remission.
Categories: disulfiram, healing process, Herx reactions
I will be following your experience. I just started today so hoping to lead. From you. Thanks for doing this and I wish you healing from this infection!
Thank you for the good wishes. I’m hoping this will be an answer for us all.
I started disulfiram 2 weeks ago also. 250 mg a day. Half AM. Half PM. After 2 weeks it is suddenly hitting me hard. My steady headache is quite bad now. My pain level, bumper to bumper is an 8. It’s been worse but I know it won’t be getting better any time soon. You are the first woman I’ve read about taking it. All of the studies I’ve read have been with men. I know men and women experience Lyme differently. I am female, have had Lyme for 30 years. 20 in remission and the last 10 disabled and battling. I have been rifing for about 8 years which led me to you! I’m a big fan! I CAN NOT WAIT to read your next post! ❤️❤️❤️❤️❤️❤️❤️ Diane 🥰