Researchers are often overlooked heroes behind the scenes, providing us with the science we need to make educated decisions. But a few researchers, and a few pioneering physicians and patients have recently discovered possibly game changing science.
Researchers took many different known medications and put them into test tubes with borrelia spirochetes. These studies showed a fairly safe, inexpensive and available drug had tremendous action against borrelia. This was disulfiram, Aka Antabuse, a medication normally used to deter aloholics not to drink by inducing terrible headache like symptoms when they have just one drink. A patient took this information to his doctors who agreed to try the medication. Two more patients tried it. They all experienced success, and other practitioners filed suit.
You can read more about these researcher, their experiments, and how disulfiram may help treat persisitent lyme at the following links:
My brain is super foggy today, I don’t remember when the first patients tried it. Those links will tell you. When I first read of this discovery, I also discovered I couldn’t take this possible miracle drug due to some possible interactions and the fact that I had no Doctor who would be willing to prescribe this for me. Lucky for me, at the end of June, I met a new Lyme Literate Nurse Practitioner, who assured me that what I thought were contraindications weren’t. I had read diabetics shouldn’t take it, but she explained I’m not a diabetic, I have blood sugar disregulation caused by the infections, but not diabetes. Disulfiram can cause neuropathy, and I have neuropathy issues from lyme already, but she said we could watch that by watching my copper intake and making sure I have enough zink to help remove copper. She has also prescribed for other patients with good results, and thought it would be a good possibility for me. So I am now one of the patients who are testing this out.
Alcoholics seem to be able to take this drug with no side effects. We Lyme patients never have such smooth sailing. We have to be super careful we avoid all aldehydes in food, drink, personal care products, and basically everthing we use. This means no hand sanitizer (added fun in a Pandemic), no alcohol, no glycols, no vinegar, no chocolate, no cinnamon, no aldehydes, no copper, no yeast, no green tea, no overripe fruit or fermented foods.
We also have to start low and slow and build up over time so our bodies can handle it. Dosage is best done by weight. My target dose is 375 mg. It is currently Day 36 for me. I began at 62.5mg every 3 days for 10 days, then every two days, then every day for 10 days. Yesterday I added in a second 62.5mg dose.
It’s powerful stuff. It makes me wish I could just sleep all day like a modern Rip Van Winkle. I miss food, as it seems to limit my already limited diet even more, to almost nothing. and the few things I can eat get worse as things start to taste more and more like rubber every day. I am not normally sensitive to things, but I immediately started noticing when I accidentally expose myself to things I shouldn’t right off the bat. I accidentally ate a pickle, instant hangover feeling. I accidentally used hand sanitizer, instant hangover. I accidentally ate some prepared processed rice mix, instant hangover. But, now I know better which things to avoid. I understand the rules. This might make it sound horrible, but the truth is, this is the most hope I have had for a long time. Nobody ever said it would be easy, just that it would be worth it. I forget where the quote is from, but I love it. It’s always been a favorite.
Some lymies experience relief while treating with DSF, others don’t notice an improvement until after they stop it, and of course some do not report success. at this time, not enough is known to know how well this works for these infections. but, even going low and slow, I am already experiences herxing and returning of old familiar symptoms I haven’t had for a while. (Funny how when you are chronically ill, some symptoms almost feel like old friends when they clear and then come back to haunt you again). Detox detox, detox like you have never detoxed before. Eat carefully. Keep remedies like dihydromyricetin and benfotiamine nearby in case you accidentally expose yourself. rest as much as you can when you can as thats a huge part of healing too.
I will keep slowly but surely plugging away at this medicine like a turtle, in the hopes that when I am done, I will experience a huge improvement. this is the most promising thing those of us in this community have sen in a long time. It is super powerful medicine, and one must detox like crazy to keep up with the herxes. But in the end, if its worth it….who can complain? Sure won’t be me.