I didn't have issues with the dapsone, but I think it gave me mild anemia which gave me extra fatigue. That said it was a very effective medicine for me. I took leucovorin and folafy-er to counteract side effects. One of the tests they had doing while I was on that drug was checking levels of methhemoglobin.

I can't comment on the pyramethamine, never been on that one.

I hope you do well with the therapies!

oh nice, I think that pulsing it for such short periods should minimize your issues with potential side effects.

Absolutely, dapsone was a great drug for me. Your doc might not be testing for methhemoglobin since you aren't taking the med every day. I don't know much about that marker except that it is usually monitored when patients take dapsone every day.

I was on dapsone for about 8-9 months. Started at 25mg, worked my way up to 100mg daily dose. I herxed like crazy when I first started. To be fair I herx to a lot of stuff but it was a strong herx with the dapsone. I suspect it was also hitting babesia.

Dr H has since modified how he does the dapsone protocol, he has doubled the dose to 200mg but shortened the duration of treatment to 3 months. Based on what he's told me it's a game changer for a lot of patients. It didn't get me all the way but it did some heavy lifting, but as always mileage will vary.

Hopefully the other drugs like clindamycin and pyrimethamine will also prove effective for you!

I was hoping for Rifabutin - but wasn’t expecting for the rest to be added

A lot of new meds - Clindamycin, Pyramethamine , Rifabutin and dapsone are all new to me and I’m a bit nervous of taking all those .

Donjr said...
Dapsone is a great one for lyme you will feel a lot better on it. I watched a lyme conference and they said everyone they used it on brain cleared and they healed quickly. Try not to worry too much it will be ok of course this is coming from they man too scared to do his protocol. I am starting my certain in the am and hope no issues like I have with other stuff. Praying for you girlie and I say thanks for helping me as much as u have. Cheers and let’s beat this crap !!

Thsnks Donjr

I hope it’s a game changer for me!

Ceftin wasn’t too bad for me - you should be fine

If memory serves, they had me start 25mg, taken every other day. The increases in dose happened in one week increments. After that first week, since I was managing ok, they had me go to dosing 25mg every day. After one week of that and being ok, bumped up to 50mg every day. And then the week after that up to 100mg, full dose. I do tend to have massive herx responses, and while I did herx a lot initially, it was manageable.

You might herx a bit, but the good thing is it is only for 5 days. You should have plenty of time to bounce back! I really like these pulse schedules, I think they are good at striking the infections but also give patients' bodies time to recover if they are experiencing a lot of herx issues.

So the nature and patterns of how this stuff works in my body... I don't tend to have relapses, maybe my infections are slow-growing and lazy ;) So in that sense I'm lucky. But the infections are very entrenched, probably because they had years upon years to grow unchallenged and establish themselves... so yes, I still had baseline symptoms after the dapsone protocol, but the baseline had been improved. Tbh, I also think bartonella and babesia/babs like organism are more significant for me than lyme. If lyme is the primary issue I suspect dapsone is a game-changer, I think it also hits babesia. If bartonella is primary it won't hurt to knock back the other infections but dapsone won't cripple the bart (based on my understanding), which is why I think it's good you're combo'ing with those other meds that will target bartonella.

Since I still had symptoms, they rotated me over to the PZA protocol. This also helped me, but didn't get me to remission. Still, it's like night and day compared to what my baseline used to be, have seen lots of improvement. But I can't lie, it has felt like a herculean task trying to recover my health, it's mentally and physically exhausting. What keeps me going is that deep down I feel remission is very possible, plus the symptoms are frustrating enough that I'm willing to endure a lot to try and get better!!! I think that's a state of mind many of us can relate to!!!