Posted 1/6/2024 11:36 PM (GMT 0)
Hi France, Horowitz’s 2023 paper in Microorganisms has the protocol spelled out in detail in tables 1 and 2. You can find the paper online https://www.mdpi.com/2076-2607/11/9/2301 (click download to get the pdf). I wrote up some details of my experience and reasons for needing to stop in a recent post (separate from the original post about the paper) and would be happy to answer any more questions. I did not make it all the way through, partly because I caught a virus and it was too much for me to handle on top of all the serious side effects. I did get hemolytic anemia and Methemoglobinemia fairly early on into the double dapsone despite following the protocol exactly and doing all the testing. I have been off the dapsone for a week and a half and my blood test numbers are still really bad despite still taking the highest dose of folate and leucovorin and continuing with a lower dose of methylene blue. My doctor was not experienced with dapsone or other aspects of the protocol and that made it a lot harder and scarier because there are a lot of decision points along the way when things start going wacky with blood tests, and hard to know what to ignore when some side effects can be very serious and even fatal. The protocol involves taking a huge number of supplements along with all the prescriptions. I made a spreadsheet to help sort out inventory for ordering on time and also daily and weekly scheduling as dosing increased across the weeks. If you want to send me an email I would be happy to share. I thought I could get through anything for 10 weeks but it was rougher and scarier than I had hoped. If you do go ahead I would encourage you to really listen to yourself and how you feel (and also stay on top of all the weekly blood tests of course) and take the conservative route if in doubt. He does talk about putting the dapsone on hold at various points in the protocol if the blood tests show sudden changes to wait for things to stabilize, but that is where not having the experience to fall back on made things difficult. I am very disappointed I did not make it through but I do think even the amount I did get through has made a significant difference. I expect to understand the impact better as I recover from the side effects.