New Horowitz / Fallon study - Sept 2023 - High Dose Pulsed Dapsone

Good morning to all. Here’s my Horowitz protocol update. I am now halfway into week 4 of the dapsone (week five of the protocol including the first week of onboarding the other antibiotics), so I am up to 100 mg of dapsone per day. I am still managing ok, surprisingly not experiencing a lot of herxing, but all existing symptoms of pain, fatigue and brain fog still persist at about the same levels as when I started. I also started the methylene blue at initial levels (50mg BID) this week and have some urinary discomfort from that, so a bit worried about eventually going up to 300mg/day. My biggest worry at the moment is that I did the end of week 3 blood test but also included haptoglobin (which was not included in listed testing until after the first week of double dose dapsone) and my levels were below detection limit which usually indicates hemolytic anemia, but my CBC and CMP results were all normal, so I am not sure how much to worry. I was waiting on the methemoglobin results but just now see they posted “specimen exceeds stability for the test requested” so I will need to go back and try again. My doctor is not familiar with how to interpret these results and I am trying to do some research but thought I would put it out there to this knowledgeable community in case anyone has experience with this. Horowitz discusses how babesia can be a cause of hemolytic anemia and the importance of distinguishing between root cause from anything other than the dapsone treatment, but his discussion of how to interpret haptoglobin results is not clear in the paper. I asked my doctor to reach out to Dr. Horowitz again to get his input. I did double the l-methyl folate and leucovorin last night to the levels that are supposed to begin next week on double dapsone as some insurance against anemia and I do feel a significant boost in energy this morning relative to the normal of late. I am very motivated to get through this protocol but don’t want to be stupid about it. I’m halfway there in terms of time, but not in terms of overall drug volume to come.

Well, I must have been channeling Girlie about the ER and ended up spending the day there on Wednesday, after two days of reaching the double dapsone level. I had a very scary episode of feeling like I was dying and finally called 911, knowing all the potential deadly side effects of this protocol. It was so hard to describe what I was feeling, extreme dizziness and slow waves of other-worldliness, like my brain was shutting down. My O2 reading was extremely low, but methylene blue causes false low oximetry readings so I was not sure how much to count on that. Anyway, the emergency support was really great and I felt good to know that is available when needed (hopefully never again). They tested for many different things, including cat scans and MRI for any signs of stroke, and EKGs that were normal (no prolonged QT interval, a worry on these drugs). My red blood cell count, hemoglobin and hematocrit were all low, methemoglobin was elevated, and haptoglobin still below detection, but none to a level that generated extreme concern apparently. The horrible head feeling subsided on the ambulance ride to the hospital and I haven’t had it since, though I do have constant low to medium level dizziness on these drugs, worse than my usual POTS symptoms prior to starting. I also have markedly low blood pressure relative to starting levels, just barely close to normal range. I saw my doctor the following day and she left it up to me whether to continue with the treatment plan, and I decided to keep going. So I am now nearly through the first week of double dapsone (minus one set of dosing of everything while in the hospital), with three weeks to go and then the final 6 days of quadruple, if I feel like that is still a good idea when I get there. I think I started feeling some improvement in some symptoms (I can almost make a fist again because of the reduction in swelling of joints) and I haven’t crashed yet today, still sitting on the sofa reading medical stuff all day long when I would normally be dead to the world by now. I don’t trust it yet, given the cyclical nature of all this, but I have not had this degree of flexibility in my hands for at least 9 months according to my symptom monitoring chart. And there’s the latest update. Happy solstice to all!

Everbark, I hope you had a peaceful holiday despite the intensity of the treatment.

Can you give us some news? How is it going?

I'm going to start the treatment on my own, my doctor agrees to follow me without knowing much about this protocol (in France the situation is very complicated with lyme).

Are you taking the Dapsone every single day? And just at the end, you are going to increase the dose to 400mg, right?

Hi France, I wanted to make sure you saw my response in your other post requesting info on the protocol with a link to the paper that gives very detailed instructions. The Dapsone is a slow increase over 4 weeks up to the double dapsone, which you then stay on for 4 weeks. The final week is 4 to 6 days of quadruple. I listed a number of things to watch out for in other posts and am happy to communicate more if/when you are ready for that.