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Dapsone ... how long should treatment be?

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Posted 8/23/2018 5:04 PM (GMT -5)
I've been looking around, but haven't been able to find a good answer for this... Probably because the treatment is relatively new.

How long should dapsone treatment be given in a hope to permanently irradiate Lyme?
Posted 8/23/2018 6:01 PM (GMT -5)
Dr H is doing 200mg dapsone protocol for 3 months duration. Was told results have been very good. There are also other ways to use dapsone, seems like Dr J is using lower dose pulse strategy (Girlie is currently on this).
Posted 8/23/2018 7:44 PM (GMT -5)
I am taking 50 mg/day 5 days one week (out of a 4 week cycle)

I'm doing this protocol for 3 months...maybe 4.

I take it with Pyramethamine (Daraprim) plus other antibiotics.
Posted 8/24/2018 1:54 AM (GMT -5)
OK - That's good to know. I will probably only be allotted 3 months of disability time from my work, so that works out good. If the treatment required a longer time frame than that, then I would have figured out a way to take off longer, but it sounds like 3 months will be sufficient for this treatment.
Posted 8/24/2018 2:19 AM (GMT -5)
This protocol I'm on may be extended...won't know until my next appt.
Posted 10/27/2018 9:06 PM (GMT -5)
Hi Girlie,

How is your dapsone treatment going? Are you still on it?

I spoke to my LLMD and she said that when I eventually take my 3 month leave of absence from work, that I'll need to be on dapsone for at least 1 month at 200mg. I guess the first 2 months would be working up to this.

I have horrible herxes, but I guess if I don't work I might be able to bear it.
Posted 10/27/2018 10:09 PM (GMT -5)

sebreg said...
Dr H is doing 200mg dapsone protocol for 3 months duration. Was told results have been very good. There are also other ways to use dapsone, seems like Dr J is using lower dose pulse strategy (Girlie is currently on this).

I thought it was 200 mg for 7-8 wks. That’s what he said on tv interview. I love the idea of OFF all abx after 8 wks.

Side note - he also mentions new short term, 5 drug bart protocol. Have you heard of this?
Posted 10/27/2018 10:38 PM (GMT -5)

gfields said...
Hi Girlie,

How is your dapsone treatment going? Are you still on it?

I spoke to my LLMD and she said that when I eventually take my 3 month leave of absence from work, that I'll need to be on dapsone for at least 1 month at 200mg. I guess the first 2 months would be working up to this.

I have horrible herxes, but I guess if I don't work I might be able to bear it.

Yes I am still on it. As with all dr j’s protocols - it is pulsed.
I just finished another week (cycle 3)
But because cycle 2 was very rough - and took me a full week to recover, I now only take it three days instead of five.

I take daraprim and two other antibiotics with the dapsone.

I can’t say for sure if it was the dapsone or the daraprim that I strongly reacted to.
Posted 10/28/2018 12:25 AM (GMT -5)
Girlie,

Is it working? How are you feeling? Of course we won't know until later but I guess it wouldn't hurt to ask.
Posted 10/28/2018 1:04 AM (GMT -5)

oregonhay said...
Girlie,

Is it working? How are you feeling? Of course we won't know until later but I guess it wouldn't hurt to ask.

Well a couple weeks ago I was thinking it was... feeling more optimistic... less head pressure ... no sweating in evening ...

Now? Not so sure

I have a two week period starting now and all I take is 5 days of Alinia in that two week period.

As of today I think I’m going to take a week break - see what my baseline is and then second week take Alinia.

Although not sure one week is long enough to gauge baseline - after the meds I was just on...

I’m thinking of asking dr J if I can take two or three weeks off so I know what is what....
If I was to stop it all today I don’t even know how I’d feel....don’t know what is die-off... side effects of meds...or my symptom baseline.
Posted 10/28/2018 10:03 AM (GMT -5)
I would imagine that you would feel very sick while you're on the protocol, and then once you're off of it for a couple of weeks, you might start to feel better. At least for me, personally, I always feel deathly ill when I'm taking the antibiotics, and then when I'm off of them I feel better.
Posted 10/28/2018 11:51 AM (GMT -5)

gfields said...
I would imagine that you would feel very sick while you're on the protocol, and then once you're off of it for a couple of weeks, you might start to feel better. At least for me, personally, I always feel deathly ill when I'm taking the antibiotics, and then when I'm off of them I feel better.


I haven't had those clear-cut patterns though.... So it would be interesting to find out now what my baseline is.
I don't necessarily feel a whole lot better on my off weeks.
Posted 10/28/2018 1:35 PM (GMT -5)
I feel that for some people they need something like what Dr. H is doing e.g. high dose of dapsone for a few months and/or the 5 abx cocktail. Hyperthermia I think would be another effective modality against the real stubborn cases.

Dr. J isn't doing any of these yet but when I see him I'm going to press him on it in December because whatever I'm doing isn't getting the job done as I'm stuck in a cycle.

Note I've already been through what Girlie is doing and have went to a protocol that has more time in between abx and less of them and i'm not responding as hoped.

k07 do you know anything more about the 5 abx regimen?
Posted 10/28/2018 2:26 PM (GMT -5)

Rikky1 said...
I feel that for some people they need something like what Dr. H is doing e.g. high dose of dapsone for a few months and/or the 5 abx cocktail. Hyperthermia I think would be another effective modality against the real stubborn cases.

Dr. J isn't doing any of these yet but when I see him I'm going to press him on it in December because whatever I'm doing isn't getting the job done as I'm stuck in a cycle.

Note I've already been through what Girlie is doing and have went to a protocol that has more time in between abx and less of them and i'm not responding as hoped.

k07 do you know anything more about the 5 abx regimen?

No, i don’t know anything about the bart protocol except that it is 5 drug and short term. Knowing dr. H’s protocols, i’d guess doxy, rif, plaq, bactrim &. ? Can’t put dapsone with bactrim. What would you guess?
Posted 10/28/2018 2:51 PM (GMT -5)

k07 said...

Rikky1 said...
I feel that for some people they need something like what Dr. H is doing e.g. high dose of dapsone for a few months and/or the 5 abx cocktail. Hyperthermia I think would be another effective modality against the real stubborn cases.

Dr. J isn't doing any of these yet but when I see him I'm going to press him on it in December because whatever I'm doing isn't getting the job done as I'm stuck in a cycle.

Note I've already been through what Girlie is doing and have went to a protocol that has more time in between abx and less of them and i'm not responding as hoped.

k07 do you know anything more about the 5 abx regimen?

No, i don’t know anything about the bart protocol except that it is 5 drug and short term. Knowing dr. H’s protocols, i’d guess doxy, rif, plaq, bactrim &. ? Can’t put dapsone with bactrim. What would you guess?

Zithromax?
Posted 10/29/2018 7:44 AM (GMT -5)
Could be azith. I was expecting something different but he does like azith. Unfortunately I can’t take that ine.
Posted 10/29/2018 11:40 AM (GMT -5)
Dr J’s is 4 abx - actually 5 on two days if you include the pulsed Flagyl.

I’m not sure dr H doing a 5 drug regimen will be a break through and if it’s not pulsed (ie daily) - how many would be able to tolerate it?
Posted 10/29/2018 1:55 PM (GMT -5)

Girlie said...
Dr J’s is 4 abx - actually 5 on two days if you include the pulsed Flagyl.

I’m not sure dr H doing a 5 drug regimen will be a break through and if it’s not pulsed (ie daily) - how many would be able to tolerate it?

That’s why I was wondering if there could be a new drug in mix. He never really pulses and always uses many abx. I was on doxy, plaq, bactrim, rif for about 8 weeks.

What about pza?
Posted 10/29/2018 4:07 PM (GMT -5)
Does Dr. H incorporate pulsing as a standard approach to treating the infections like Dr. J does?

I can tell you my wife and myself would literally die if we were pounding ourselves with abx every day. That's what my first LLMD did I mean it was literally daily for months on end and I couldn't function.

How does anyone function being hit with multiple abx cocktails daily?
Posted 10/29/2018 4:22 PM (GMT -5)

Rikky1 said...
Does Dr. H incorporate pulsing as a standard approach to treating the infections like Dr. J does?

I can tell you my wife and myself would literally die if we were pounding ourselves with abx every day. That's what my first LLMD did I mean it was literally daily for months on end and I couldn't function.

How does anyone function being hit with multiple abx cocktails daily?

Most llmd’s that prescribe daily dosing are only prescribing two abx daily.
ie Rifampin plus mino

Or an antimalarial plus one antibiotic: Mepron plus
Azithromycin

I’m not sure what Dr H’s plans are for the 5 abx - but that would be hard to tolerate if it wasn’t pulsed.

I know I couldn’t do it.
Posted 10/29/2018 5:50 PM (GMT -5)
He doesn't seem to pulse with days off (or at least that was in my case). He does a great job though with supplements - geared me up with some great detox. When I started doxy/rif/bactrim/plaq I didn't even have my usual antibiotic flare ups (urinary issues and insomnia). I was actually totally fine. He had me on NAC, ALA, PC, Lip Glutathione and a couple other things.Very expensive though.

I also saw on facebook that Olivia from livlyme (she is only 13) who sees Dr. H only did 30 days of high dose dapsone along with 4 other antibiotics. From what he said on the news interview she seems to be in remission.She had done various antibiotics for 5 years and this is the first time she is off them. Hopeful that this is it for her.
Posted 10/29/2018 8:13 PM (GMT -5)
There may be something to hitting the infections really hard and fast like a blitzkrieg in order to knock them off their perch. It seems to work for some.
Posted 10/29/2018 9:49 PM (GMT -5)
I had a very strong reaction to just 50 mg dapsone with daraprim (50) and a couple of abx - taken just for 5 days.

I wouldn’t be able to do that for 30 days and higher dose!

(Unless it was the Daraprim that hit me hard)
Posted 10/29/2018 9:52 PM (GMT -5)

Rikky1 said...
There may be something to hitting the infections really hard and fast like a blitzkrieg in order to knock them off their perch. It seems to work for some.

You go first... lol
Posted 10/30/2018 12:56 AM (GMT -5)
Ya Girlie. I think some of us just have so many spirochetes in our body that the blitzkrieg approach may not be practical. I figure I've had lyme for almost 20 years now. 15 of those years it was untreated. I suspect that most cells in my body probably have a spirochete in them. Anything I take makes me herx because my body is inundated with spirochetes. That being said, I think the low and slow approach is probably the best bet for me. There's something to be said for low doses, taken consistently, for an extended period of time... like a year. I think it will eat away slowly enough to lower to spirocheteal load to the point where we can ready ourselves for a blitzkrieg. If we try a heavy fast dose with too high of a load, the body will just get overwhelmed.
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