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Dapsone as a Next Step

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Lyme Disease
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Posted 11/11/2020 8:33 PM (GMT 0)
I started treating clinical Lyme/Bartonella/Babesia back in March.

I started with Doxycycline/Cefuroxime, then added pulsing Mepron/Tinidazole. In June, I removed Mepron/Tinidazole and added Rifampin, which I stayed on through September. In October we switched to Clarithyromycin/Cephalexin.

I've tolerated everything minus a few side effects from Rifampin. If I've herxed, it hasn't been significant. My two major remaining symptoms are muscle pain - mainly in my upper back - and foot pain, which I'm not sure is from Bartonella or from Plantar Fasciitis caused by Lyme.

I feel I've improved but have kind of plateaued. My LLMD suggested I maybe try Horowitz's Dapsone + doxy + rifampin regimen.

I have seen a few threads on Dapsone but most are old. Has anyone here had success with it?
Posted 11/11/2020 9:28 PM (GMT 0)
I was on Dapsone for several months (6 in total I think) - But it was with Rifabutin daraprim, Ceftin, Alinia, Clindamycin and minocycline.

Can’t be sure really if dapsone itself contributed to improvements...
Posted 11/11/2020 9:40 PM (GMT 0)

Girlie said...
I was on Dapsone for several months (6 in total I think) - But it was with Rifabutin daraprim, Ceftin, Alinia, Clindamycin and minocycline.

Can’t be sure really if dapsone itself contributed to improvements...

How did your body respond to it? I've read people can really struggle on it.
Posted 11/12/2020 3:25 AM (GMT 0)
That was the protocol from he//

At the end of the week, Friday night I would feel horrible - I had a high fever, rapid pulse rate, BAD body pain. My arms were jerking uncontrollably.
I had never felt that bad prior or after that protocol.
I was very close to going to the ER dept. It was scary. My husband took the day off work to watch and take care of me.
By next morning, I felt a bit better and continued to improve - I think it took a week to recover.

It happened again the second cycle - but not quite as bad - and got less and less severe each cycle.

I’m trying to remember if Dr J changed the protocol after the first reaction - I’m thinking he may have reduced the dapsone from 5 days in a row to just M/W/F

I’d have to check my protocol sheets.
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