Dapsone

i was just diagnosed with Lyme even though I had it for years the main positive coinfection I have is babesiosis the dr put me on ceftin for Lyme 500 mg twice a day and also first on dapsone 25 mg and i starting herxing like crazy after 3 weeks and the Herx stopped i went up to 50 mg and herxing again . the Dr. wants me going up to 200 mg of dapsone.

horrowitz has been pioneering the use of dapsone for lyme and co-infections

first at the standard leprosy dose of 100mg taken along with other standard abx like doxy, macrolides etc

one patient took double the dose for a few weeks by accident and reached remission - so he trailed double dose in some of his patients and found more reached remission - or reached remission in a shorter time than on 100mg ( with other abx )

he has recently published a paper on the review of around 40 of his most difficult to treat patients on 400mg or more of dapsone again with a combination of other common lyme antibiotics - but for short durations of only a few days at a time in pulses - and again found it to be more effective

most of his most difficult patients are co-infected with bartonella or babesia or both

he uses a significant number of supporting medications to try to minimise the many troublesome and potentially dangerous side effects of dapsone and monitors them with bloodwork for liver function, CBC, kidney function etc
methylene blue
multiple folate supplements
etc

i do not believe he puts patients on the higher dapsone doses unless they have failed the lower doses - for safety reasons

If you're going to take dapsone, or any antifolates, you need to watch for folate deficiency.

Does babesia flare like bartonella does? That is, can low levels of antibiotics just stir it up and make it become more aggressive?

Bartonella and babesia can sometimes be difficult to distinguish. When I took azithromycin & atovaquone, the intent was to treat babesia, but it mainly ended up killing bartonella.

When I tried Horowitz's double dapsone protocol I felt like I was dying and I never even made it to 200mg. To be fair, the protocol calls for many different meds and supplements. I can't pinpoint Dapsone as the problem. Additionally, I was sensitive to treatment at that moment. I don't think I was in the right headspace to try a protocol that aggressive.

On the other hand, Disulfiram made me have severe herxes. This was worsened by that fact that I jumped on the DSF craze immediately and we went in at 500mg/day right at the start. I also felt like I was dying the first couple of months at this dose. I had to start and stop several times due to the severe herx, but after several months i had a noticeable improvement in my condition and symptoms. On Disulfiram I never felt the way I did on Dapsone. Dapsone was different. It is hard to explain. As a poster said a few posts up it seemingly gave bad Babesia like symptoms. I often felt like I wasn't getting enough oxygen.

Dapsone scares me a bit at this point. During that protocol my symptoms drove me to the ER. At that point, after nearly six years of dealing with this illness, it takes a lot to drive me to the ER.

I can't deny it seems that some people have had a great response to dapsone. In my mind, I like where Horowitz went in his mega dosing of Dapsone and making the treatment period super short. I think it was like four days. Those four days would be rough, but I would venture to say that it would make treatment more tolerable and, hopefully, it makes side effects less pronounced and treatment safer.

yep - its an older drug that has quite a list of off target effects on human biology

some people are more susceptible than others

and people with Lyme etc seem to be in general much more sensitive to it in terms of side effects.
for instance there is no mention in the general use info on the medication for people with leprosy - the main on label use case for it

whereas - for people with Lyme - many have trouble tolerating even 100mg - and have to have lots of supportive meds/supplements to stay on it - interesting

this article talks to its many effects on the human biology - much of which sounds rather unpleasant

https://pubmed.ncbi.nlm.nih.gov/7641572/


i do think Horowitz is on to something with his high dose short duration approach - at least it shows some drugs are more bactericidal than the common therapies used today - and gives some hope that shorter more tolerable treatments can be found.

to the OP - it looks like anyone considering dapsone treatment - and in particular higher doses than 100mg per day - should consider glucose-6-phosphate dehydrogenase testing to hep understand their risk of dapsone induced haemolytic anaemia

Girlie said...
“ to the OP - it looks like anyone considering dapsone treatment - and in particular higher doses than 100mg per day - should consider glucose-6-phosphate dehydrogenase testing to hep understand their risk of dapsone induced haemolytic anaemia“

Yes - Dr J had me do that test.

I had asked Dr. J about a month ago about if I was going to be going on Dapsone at all and he said no since I can take Bactrim. He considers Bactrim superior and said if patients have a sulfa allergy then he considers Dapsone for them but prefers Bactrim, thought that was interesting to hear from him.

Girlie said...
“ I had asked Dr. J about a month ago about if I was going to be going on Dapsone at all and he said no since I can take Bactrim. He considers Bactrim superior and said if patients have a sulfa allergy then he considers Dapsone for them but prefers Bactrim, thought that was interesting to hear from him.“

Hmm - that’s interesting because he prescribed dapsone for me but I don’t have a Sulfa allergy.
Maybe this is something new - it was several years ago (4?) when I was on prescribed the Dapsone.

Yeah my best guess is he’s seen better results with the Bactrim in recent years, some things do change and evolve in his plan as you know and treatment methods