Dapsone and deplin

Hi all. It's been a while since I've been here. Been having a hard time and honestly just in a funk. Been sick off and on (flu, stomach virus, severe sore throat for over a month etc) plus some relapses. Just getting over the shingles. Finances a mess. TONS of stress. Days in bed are over taking days on feet again.

I've been on abx for two and a half years now. Still sick, still weak, limited mobility, lots of pain, fatigue etc.

Just had appointment with llmd and finally we are looking at the possibility of babesia. I am currently on ceftin, plaquenil, azithromycin, Nystatin, and rifampin. Have been for a long time now. Now we are going to start dapsone and deplin in addition to these. Is there anything I should be aware of with these two new ones?

Should I be concerned about how long I'm on abx? If I stop them I relapse bad in three or four weeks. Lately even with them I am pretty bad. Anyway dapsone and deplin any concerns? Hope the rest of you are doing better.

Llmd wants me to back off ceftin to every other day. He also wants me to switch to the carnivore diet. I have been using herbals as well. I'm on a ton of stuff right now. If it is babesia will this combo work? Thanks for replying girlie, I appreciate your time and knowledge.

Excessive sweating is the main symptom but as you stated is it caused by babs, Bart or ? Is dapsone effective for anything else? I suggested mepron but llmd wants dapsone. I think we are just throwing darts in the dark at this point hoping something hits the bullseye or close to it.

Girlie said...
I’m not sure if it will work for Babesia -
I think both Plaquenil and Dapsone may be somewhat effective on Babs - will it be enough though?

Anti-folates (eg trimethoprim, proguanil) are often used for babesia. I assume dapsone would work also. These drugs also tend to hit borrelia.

Have you considered doing a PCR test (eg dnaconnexions) to identify the pathogens, rather than just throwing darts in the dark?

Girlie said...
Bactrim is usually paired with something - ie Mepron or Malarone to treat Babs.

I had the electrolyte problem with bactrim. I was eating lots of extra salt and it was still messing with my kidney function. I got a surprisingly strong herx from malarone, but otherwise had no significant side effects. The proguanil in malarone seems to hit borrelia as well as babesia.

Girlie said...
Just know that with a pcr - a negative result won’t tell you anything - only the positives will.
Could be false negatives.


I had a positive bart test after over a year of treatment with Rifampin.
It can be helpful to test when you get a positive

I had surprisingly good luck with dnaconnexions. Got positive results for borrelia and bartonella.

WV Mike said...
I am currently on ceftin, plaquenil, azithromycin, Nystatin, and rifampin.

That's generally not a recommended protocol for bartonella.

Dapsone might work for bart. I had some success with bactrim, but the usual recommendations for bartonella are doxy/mino or rifabutin.

Girlie said...
Quinn - Many llmd’s prescribe Rifampin for bart.
In fact I see it more than Rifabutin.

I saw two LLND’s prior to seeing my LLMD and both prescribed Rifampin. They may have prescribed Rifabutin afterwards -but their first option - their go-to was Rifampin.

LLMD MR (Seattle) also prescribes Rifampin. I believe he offers Rifabutin too.

We have several forum members who are taking Rifampin.

It may or may not work. Bartonella resistance to rifampin has been reported:

https://www.ncbi.nlm.nih.gov/pubmed/17449882
https://www.ncbi.nlm.nih.gov/pubmed/19929979

Quin said...

WV Mike said...
I am currently on ceftin, plaquenil, azithromycin, Nystatin, and rifampin.

That's generally not a recommended protocol for bartonella.

"Dapsone might work for bart. I had some success with bactrim, but the usual recommendations for bartonella are doxy/mino or rifabutin."

I'm allergic to doxy, penicillin, sulfa drugs and some others I can't remember right now so I can't always do the "normal" protocols. Just lucky I guess ;).

I was on Dapsone and my Dr. said it has activity against Babesia, but in my experience it didn’t have much activity against Babesia. Felt like crap... between the herxes from killing Lyme and Babesia worsening. I was in pain non stop for 9 months. Clindamycin suppresses my Babesia symptoms well. Alinia helps too but doesn’t work on sweats like Clindamycin. But first choice for Babesia is usually Mepron. Cryptolepis herb would be good to add as well as someone mentioned.

I had surprisingly few side effects from malarone, and it seems to work well against borrelia too. The problem is it is expensive and difficult to obtain. Often pharmacies are sold out.
Clindamycin upset my stomach, and no amount of probiotics would resolve it.
Valproate or disulfiram are options for babesia, if you can tolerate the side effects of those. Valproate seemed to work well against my intestinal parasites, and people report this for disulfiram too.
Bartonella is just difficult. It's often resistant to beta lactams (amoxicillin, cefdinir) macrolides (eg clarithromycin) and may or may not be resistant to rifampin. Ionophores (valproate, disulfiram) just seem to make it increase its metabolism and flare up. Minocycline worked well for me. Bactrim or flagyl seem to work somewhat, but I had trouble with the side effects of those.