Roadblock in Horowitz Dapsone Treatment

Hi all, I decided to start a new thread on my ongoing experience with the high-dose dapsone protocol because I am at a crossroad decision point and need help deciding what I am going to do next. Sorry this turned out to be so long!

I’ll summarize the situation to date. I have Lyme (VlsE1, C6 and a number of IGG bands), FISH positive babesia, and one antibody mildly positive for bartonella. I am working with an MD who is very well-respected locally for her support of chronic illness and cancer patients, with a strong holistic, herbal perspective. I asked her if she would support me trying the Horowitz high-dose dapsone protocol after his 2023 paper was published and she said she understood why I wanted to try and was willing to work with me. I explain this just to note that she does not have highly specific expertise in tick-borne illness or use of all the drugs in this protocol and has relied on me to stay on top of specifics and making choices about how I want to proceed. Everything went well for the first 5 weeks, with herxing well enough under control, until the first week of double dapsone, when a few days in I had such serious strange head symptoms I called emergency and was checked out at the hospital. Knowing the potential fatal side effects of the protocol I was too scared to take any chances. I think this is one of the problems with working with someone who is inexperienced with the protocol. The paper mentions sending patients home with a list of symptoms that require contacting the office immediately and I had written to Horowitz’s office to request the list but they only pointed me to his MSIDS list and did not respond when I tried to clarify my request. My blood results indicated the start of hemolytic anemia and/or methemoglobinemia, but well within expectations outlined in the paper so I went home and continued with the double dapsone. By the end of the week I was in an unusually happy, energetic mental state, feeling so optimistic, with inflammation way down, many of my chronic neurological symptoms completely gone, but still dealing with pretty serious dizziness and very low blood pressure that had been ongoing since starting the double dapsone. And then I caught a cold and my condition declined severely over the following days. I had gone for the weekly blood tests in the paper the first day of a sore throat but still feeling ok, and they showed a sharp drop in RBC, hemoglobin and hematocrit (with deltas equal to the mean observed change given in the paper for the full high dose dapsone, so it seemed like a good idea to hold the dapsone as suggested in the paper if any sudden changes.) MCV and MCH were above normal, and also an increase in white blood cells, probably from the cold. I had slightly elevated bilirubin (1.5), and LDH and reticulocyte counts were very high (343U/L and 10.3% resp.) also indicators of hemolytic anemia. My level of dizziness was extreme and I decided to take a break from the dapsone until I recovered from the cold. A day later I developed some kind of persistent vaginal infection (insane itchiness) despite being on nystatin the whole time and the typical topical treatment had no impact. I was feeling so completely weak, dizzy, drained and barely functional that I decided to take a break from all prescriptions (hydroxychloroquine, nystatin, minocycline, rifampin, and methylene blue), but am keeping up with everything else to combat the anemia and all the other supplement support listed in the paper. My doctor’s office is closed for the holidays so I could not get any advice there and I had no ability to spend any energy figuring out what to do other than try to reduce intake of anything that could potentially be worsening my condition. This is my 4th day off everything and things are improving (enough to write all this) though still gunky from the cold, very weak and dizzy, and still insanely itchy from the vaginal infection. I feel very unsure of where to go next with all this. Should I go back on everything except the dapsone, go back to a lower dose of the dapsone, stay off everything and just try to recover to a healthier state from the anemia and microbiome disruption. I can’t really assess how much impact the 6 weeks of protocol has had on symptoms except that the neuropathies seem to be gone for now. My mood was also strangely very happy until all came crashing down and it feels likely to me that was related to the protocol, but maybe it was just hope and anticipation that I would be a different person on the other side. Brain fog and fatigue are still bad, but that can also be attributable to the cold and the impact of the drugs. I also feel like I am thrown back into the dilemma of whether I should search for another doctor. I chose the current one because of proximity and local reputation, as well as trying to conserve money, but maybe that was not the wisest decision. The thought of travel to someone like Dr. J. when feeling like this is so overwhelming and I’m not sure how any of you manage that while dealing with all the other logistics of life. Maybe I should try another post asking for references in the San Francisco area (I am north of there). I know of a number of places from a few Lyme referral sites but keep getting tripped up by bad reviews that trigger my negative experiences.

Thank you for listening! I am not sure exactly what I am asking and apologize for that. I am so impressed with the thoughtfulness, kindness, and depth of learning and personal experience expressed here that I thought it would make sense to put this out there and hear any thoughts or nudges on how to decide what to do next. Thank you!

Hi Quin, Thanks for sharing your thoughts and experiences. I am on the hydroxychloroquine because I am trying to follow the protocol exactly as outlined in the paper (except for not taking pyrazinamide due to allergy). I think he uses it for the round-body borrelia form. The whole protocol is supposed to be 10 weeks (1 week of ramp up of other antibiotics, 4 week ramp up to double dapsone, and then quadruple dapsone for 4 to 6 days in the final week.) So I only made it part way into week two of the double dapsone.

That is very interesting about the happy mood and adrenal stress, and a bummer to not just interpret that as sign that things were working. It was nice while it lasted.

Thank you for sharing your experience Girlie. During the worst I also had severe head pressure and a new kind of dizziness I have no words to really describe, maybe some similarity to nitrous oxide remembering from early years when dentists used that, but with dread, not euphoria, and wild swings in feeling hot or cold. I still have pressure and more typical kind of dizziness worse than before the dapsone. I think I would have really freaked if I had had the jerking! I am thinking maybe I should switch to a longer term, lower dose, pulsed protocol, though dread managing the yeast or whatever it is. I remember you posted your protocol at some point and will look for that. I think I felt relatively ok on the lower dose dapsone, but didn’t really start to feel like lyme symptoms were improving until I started the double dapsone. It is impossible to tease apart whether that was just the cumulative effect of treatment to that point or a direct result of the switch to double dapsone. Or maybe I should continue this break and allow myself to fully recover from the treatment to get a true assessment of relative effectiveness. And there is also the question of whether to more directly address babesia before continuing with other treatment.

Unfortunately I am up against a deadline of needing to return to work in a few weeks or else apply for long-term disability, which I have no faith in having a positive outcome. If my brain fog is improved sufficiently to be able to work that would be a miracle, but impossible to tell yet. With ongoing cold symptoms and treatment side effects still affecting my head with pressure and dizziness I am not sure what will remain after that clears (if that clears). The symptoms that are clearly better at this point are joint pains and neuropathies and I am certainly grateful for that.

Hi Garzie, Thanks for being so supportive and encouraging throughout this journey. After my experience, I completely agree I do not recommend trying this unless one is working with someone explicitly trained by and in direct contact with Horowitz (or himself of course) or has some other extensive experience using higher doses of dapsone. I was grateful that he wrote such a thorough paper outlining the protocol (although with a few typos that needed to be figured out), but it opens the door to individuals trying this on their own if they can get all the medications and that is a scary thought. I found it interesting to read some comments below a facebook post Horowitz made complaining that so few are using his protocol. Apparently even graduates of his dapsone training program are refusing to provide the treatment. I suspect that is for a variety of reasons, including level of patient risk involved, liability risks, and the high degree of self-monitoring and compliance required from the patient to follow a very difficult regimen, even just logistically managing procuring and doling out so many medications throughout the day.

I thought I was prepared to endure anything for such a short period, and maybe I could have if I had not compromised my system further by catching a virus. I do think I would have needed to extend the treatment time and pause the dapsone for a week or two here and there to let the folate and methylene blue remediation catch up to the dapsone side effects, as he explains may be needed. But it is tough to make those calls on your own, especially when already brain fogged with increasing side effects on top of that. I would have so appreciated an experienced person to ask and tell me whether or not to worry and how to proceed.

I will answer your questions below and that will highlight some of the other issues that arose.

1. Yes, I did the G6PD testing and got the go ahead on that. That is extremely important before starting this! I did have some iron-deficiency anemia before starting my doctor was not concerned about that for whatever reason.

2. The test for methemoglobin requires special handling (chilling) and quick turn around and the two labs I tried both failed. I did get one reading while in the hospital, but even they had to come back for more blood after failing the first time. This problem occurred even after I knew about the special handling and informed the lab taking the blood. That is unfortunate because it is a primary marker Horowitz uses to monitor dapsone useage and make dosing adjustments. A pulse oximeter is basically useless when taking methylene blue (MB) because methylene blue absorbs the same frequency of light emission used to calculate O2 levels. I was freaked out on the day we called emergency services when my O2 using our cheapo oximeter was measuring 82%, but luckily I read about the issue ahead and was able to inform them of the problem. Better oximeters used by EMTs and at the hospital measured higher (around 90%) but I don’t think there are any that defeat the problem. My O2 levels continued to drop the more I increased the methylene blue following the protocol. I thought maybe it could be useful as a relative measure throughout treatment but body levels of MB seem to fluctuate pretty significantly if I can extrapolate at all from urine levels.

3. I was taking the dose of MB as proscribed in the paper, which is a lot! I was up to 200mg BID and final dose would have been 300mg BID before starting the quadruple dapsone. High doses of MB itself can cause hemolysis in some people and Horowitz does mention juggling increasing folate support while lowering MB, but he is not entirely clear on how to determine when that might be required, and that is another example of why it would be so much better to be working with someone with a lot of experience with this.

4. Yes, I was (and still am) taking high doses of L-methyl folate (60mg BID) and leucovorin (100mg BID) to combat the methemoglobinemia. It was a major struggle to get the pharmacy to dispense all required medications.

Getting timely lab test results is a major obstacle and I was worried about that especially in the final week of quadruple dapsone when two tests are required for fine adjustments. At best I received results 24 hours later and as noted before, the methemoglobin test was very difficult to get any results. Horowitz says haptoglobin should also be tested but does not explain what values should be or how to use as a monitor. My values were below detection after the first week of dapsone and so that seemed useless as a monitor for anything for me, and also made me worry that something was wrong. Either his labs produced more nuanced results below 8 mg/dl or something was off for me, or he was leaving something out about how to use the measure in his paper.

thanks for the answers and thoughts Everbark

i wonder if the low iron Anaemia made you more susceptible to adverse effects relating to drug induced anaemia - hard to know - but i am thinking it may not have helped - and if it were me - i think i would normalise that before trying again in case it would help get an easier ride

i did read about people using the at home oximeters to try to gauge methaemoglobinaemia
as you say - its not going to be an absolute measure - but as you say - it might be a useful relative one
especially if you had some lab results taken at the same time to compare
the stated half life for MB s 5-24hrs so - if its somewhere in the middle of that range it shouldn't vary really dramatically if dosed 2x a day.

hope things stabilise and you find your new baseline soon