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New protocol for me: Dapsone and Pyramethamine (Daraprim) - your knowledge please

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Posted 8/15/2018 3:08 PM (GMT 0)
Wondering about my dosages and also about the fact that I am starting them both together.


Dapsone 25 mg twice daily
Pyramethamine 50 mg once daily (paired with leucorovin - 10 mg)

Taking those two 5 days in a row

with:

Ceftin and Rifabutin on M/W/F


What do you think? I know not many here are on these or have been on them....hoping there is some knowledge.


Will be taking the above one week per month.

Taking abx including Clindamycin (but not Dapsone/Daraprim) on Week 2.


One of my concerns: I can't get folic acid tested here.
Does the Dapsone deplete it .... or just the Pyramethamine?
Posted 8/15/2018 5:28 PM (GMT 0)
When are you starting the therapies? have you asked Dr J's office about the folic acid test? I think I mentioned this in another thread, but given the low dosage of the dapsone and also very few days you are pulsing I'd be surprised if you have issues with those side effects. Personally I would be very confident taking those meds under those treatment frameworks.

If you are worried about depleting the folic acid might want to ask if there is a supplement you could take, like folafy-er or something like that....
Posted 8/15/2018 5:46 PM (GMT 0)
Good luck Girlie.... Dap is one of the very few abx I haven't tried yet. Keep us posted on any progress or regress
Posted 8/15/2018 6:09 PM (GMT 0)
Both dapsone and daraprim work by inhibiting folate or folic acid metabolism. Best of luck with your new protocol Girlie.
Posted 8/15/2018 10:33 PM (GMT 0)

sebreg said...
When are you starting the therapies? have you asked Dr J's office about the folic acid test? I think I mentioned this in another thread, but given the low dosage of the dapsone and also very few days you are pulsing I'd be surprised if you have issues with those side effects. Personally I would be very confident taking those meds under those treatment frameworks.

If you are worried about depleting the folic acid might want to ask if there is a supplement you could take, like folafy-er or something like that....

There's supposed to be 10 mg of Folic acid with it...
my script is : Pyramethamine 50/leucovorin 10

the leucovorin is the folic acid...

Thanks sebreg.... I haven't asked Dr. J about it...he had me go up to the Quest Lab and get it tested along with others' that I was unable to do here
Posted 8/15/2018 10:35 PM (GMT 0)

tickbite666 said...
Good luck Girlie.... Dap is one of the very few abx I haven't tried yet. Keep us posted on any progress or regress

thanks tickbite666. I will keep everyone posted...as this will be good information for other members...as I have been treating for almost 4 years now.
(but, only with Dr. J. for 6 months)
Posted 8/15/2018 10:37 PM (GMT 0)

ToddPaul said...
Both dapsone and daraprim work by inhibiting folate or folic acid metabolism. Best of luck with your new protocol Girlie.

Thanks ToddPaul. I'm a bit concerned about those two together....Supposed to start them both on the same day and do M-F -
Posted 8/15/2018 10:53 PM (GMT 0)
That's very interesting. My LLMD is putting me on a dapsone protocol in 6 months time. I will stay on it for 3 months. Along with rocephin iv and doxy and rifampin.

Keep us updated on your experience with this girlie!

I know Dr. H says you should expect serious herxes on it. Will need to detox.

What is Pyramethamine?
Posted 8/15/2018 11:48 PM (GMT 0)

ravenhome777 said...
That's very interesting. My LLMD is putting me on a dapsone protocol in 6 months time. I will stay on it for 3 months. Along with rocephin iv and doxy and rifampin.

Keep us updated on your experience with this girlie!

I know Dr. H says you should expect serious herxes on it. Will need to detox.

What is Pyramethamine?

It’s Daraprim - another Persister med.
Posted 8/16/2018 2:00 AM (GMT 0)
I know Horowitz is the one to first use this and it got people walking again. He truly believes it is a difference maker, so I think u will get more healing done and I pray for you to heal faster. Good luck love you!
Posted 8/16/2018 2:36 AM (GMT 0)
I'm not sure if it was Dr. H or Dr.J who started using Dapsone/Darparim first.

I know Dr. J. has been using it for at least two years now...maybe longer?

not sure when Dr. H. started.
Posted 8/16/2018 3:25 AM (GMT 0)
It was Dr H
Posted 8/16/2018 4:08 AM (GMT 0)
I've read the results of the 'trial' Dr. H. did in 2016 (Dapsone) - but haven't seen anything on Pyramethanine...does he also prescribe that?
Anyone here a patient of Dr. H? After that trial, did he continue to prescribe Dapsone to his patients?

Wondering what the outcomes have been.

I know Dr. J. has been prescribing for awhile...but I never asked him if it has been a 'game changer'.
Posted 8/16/2018 12:16 PM (GMT 0)
In my case Dr H has never prescribed pyramethanine. Maybe he's prescribed it to other patients though...

He had me on dapsone for a good while, probably 9-11 months if I recall. 100mg daily. He's recently switched things up, 200mg daily for 3 months. Seems to be having a lot of success.

The dapsone protocol I was on helped me, but it didn't get me to remission. I think it works well for lyme, and it probably hits babesia. But I think babesia is one of my stronger infections and it needs more concentrated treatment, and in my case Dr H has more heavily focused treatment on lyme/bart. I have all three infections but imo babesia has been relatively ignored.

So in my view, part of the reason I didn't fully improve on dapsone is that I hadn't properly tackled babesia. It sounds like you've really targeted babesia, and some of those new meds also cover babesia, so I'm guessing in your case there is a greater chance to see awesome improvement on the dapsone which will really nail the lyme. Plus the other meds will also target bartonella, so you are getting great coverage!
Posted 8/16/2018 2:21 PM (GMT 0)

sebreg said...
In my case Dr H has never prescribed pyramethanine. Maybe he's prescribed it to other patients though...

He had me on dapsone for a good while, probably 9-11 months if I recall. 100mg daily. He's recently switched things up, 200mg daily for 3 months. Seems to be having a lot of success.

The dapsone protocol I was on helped me, but it didn't get me to remission. I think it works well for lyme, and it probably hits babesia. But I think babesia is one of my stronger infections and it needs more concentrated treatment, and in my case Dr H has more heavily focused treatment on lyme/bart. I have all three infections but imo babesia has been relatively ignored.

So in my view, part of the reason I didn't fully improve on dapsone is that I hadn't properly tackled babesia. It sounds like you've really targeted babesia, and some of those new meds also cover babesia, so I'm guessing in your case there is a greater chance to see awesome improvement on the dapsone which will really nail the lyme. Plus the other meds will also target bartonella, so you are getting great coverage!

But I’m going to be taking a lower dose (50 mg/day) of dapsone. So there’s that! Hopefully coupled with the Daraprim it will be effective.
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