Dapsone and Pyramethamine - your knowledge?

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Girlie
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Date Joined May 2014
Total Posts : 33876
   Posted 8/10/2018 12:18 PM (GMT -6)   
I will be taking them 5 days in each 4 week cycle.

Dapsone - 25 mg x 2 daily
Pyramethamine - 50 - x1 daily plus Leucovorin 10 x1


So if the Pyramethamine works by inhibiting folic acid metabolism - how does it help to add more in? Won’t it just block what we add?

Also read it can cause anemia (from folic acid deficiency) and bone marrow suppression.


Any experiences? Did you tolerate it?

I am also taking Rifabutin plus Ceftin and mino on the M/W/F with the dapsone and pyramethamine.

Also - I don’t think I can get folic acid testing - not available .

I just had a lab test for folic acid but I don’t think I can get monthly follow ups after this one.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 8/10/2018 11:21:11 AM (GMT-6)


sebreg
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Date Joined Jun 2015
Total Posts : 1038
   Posted 8/10/2018 12:31 PM (GMT -6)   
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!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33876
   Posted 8/10/2018 7:13 PM (GMT -6)   
sebreg said...
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 so dapsone also needs to be paired with folic acid too?

So that’s two meds I’ll be on that need supplementation with leucovorin.

What is methemoglobin?

Maybe I can do that since I can’t get folic acid testing here.
I’m hoping that I won’t have too many issues since I’m on it only 5 days a month.

So you had some improvement on it - good to know.
How long were you on it?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sebreg
Veteran Member


Date Joined Jun 2015
Total Posts : 1038
   Posted 8/10/2018 7:32 PM (GMT -6)   
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!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33876
   Posted 8/10/2018 7:39 PM (GMT -6)   
Thanks for sharing, sebreg.

Once you stopped the dapsone - did you relapse at all?
Did you start another antibiotic after?

I’m supposed to take 25 mg twice daily.
Since it’s only 5 days one week - hopefully I can do that dose right away.

How long did you stay on 25 mg before going to 50 mg?

I’m supposed to be in it for 4 months and then I have my next appt.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33876
   Posted 8/10/2018 7:43 PM (GMT -6)   
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 .
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 187
   Posted 8/10/2018 8:06 PM (GMT -6)   
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 !!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33876
   Posted 8/11/2018 8:05 AM (GMT -6)   
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
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2922
   Posted 8/11/2018 9:42 AM (GMT -6)   
Girlie as you know I went through a very similar protocol as you. My wife is starting something similar in 2 weeks she's only doing Daraprim (no Dapsone) but also mixing in Cipro on week 2. She is getting Rifabutin 6x a cycle. I can tell you more if you email me back! ;o)

Neither of us are doing Clindamycin wonder why he prescribed that for you.

The Daraprim gave me a stomach ache lots of carbs helped to quell it.

Daraprim and Dapsone didn't seem to do very much for me but I did feel better after the 5 cycles so something was working.

The first cycle of the new protocol hit me pretty hard can't point to what specifically but did hurt for sure. Second cycle less so and then it tapered off.

Dr. J believes you only need to do this part of his treatment for 4-5 months. Frankly I thought I would be on the protocol longer given I did the babs protocol for over a year.

My wife nor I did any folic acid supplementation. I think because you're pulsing it and don't have any apparent issues in this area you don't need to supplement.

When do you start?

sebreg
Veteran Member


Date Joined Jun 2015
Total Posts : 1038
   Posted 8/11/2018 10:09 AM (GMT -6)   
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!!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33876
   Posted 8/11/2018 12:30 PM (GMT -6)   
Rikky1 said...
Girlie as you know I went through a very similar protocol as you. My wife is starting something similar in 2 weeks she's only doing Daraprim (no Dapsone) but also mixing in Cipro on week 2. She is getting Rifabutin 6x a cycle. I can tell you more if you email me back! ;o)

Neither of us are doing Clindamycin wonder why he prescribed that for you.

The Daraprim gave me a stomach ache lots of carbs helped to quell it.

Daraprim and Dapsone didn't seem to do very much for me but I did feel better after the 5 cycles so something was working.

The first cycle of the new protocol hit me pretty hard can't point to what specifically but did hurt for sure. Second cycle less so and then it tapered off.

Dr. J believes you only need to do this part of his treatment for 4-5 months. Frankly I thought I would be on the protocol longer given I did the babs protocol for over a year.

My wife nor I did any folic acid supplementation. I think because you're pulsing it and don't have any apparent issues in this area you don't need to supplement.

When do you start?


I will email you when I get home - just waiting for the Toronto to Vancouver flight to take off. Then one short flight from Van to our city.
I don’t have access to my forum email account until I get home.

I will start ASAP - but the meds will take a few days to arrive so may take next week off and start on the following Monday. The Daraprim will be coupled with Folic acid.
I think maybe the Clindamycin is for Babs coverage - since I only did 5 months of Babs treatment?

I will do this protocol for 4 months and then have my next appt in December.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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