My LLMD just got back from a Lyme conference in La Jolla and is going to one out East tomorrow.
She was pretty excited about Dr. H and an Asian sounding named MD having decided (via researching thousands of combos of drugs) that Dapsone can get rid of it all.
The side effects/risks are scary, though.
Has anyone done it and did it get rid of everything?
She prescribed it, but not for 4 weeks. I ease into it.
Any insight into Dapsone would be amazing. Thanks!
Posted by unsure445 (Member # 15962) on :
Hoping Dapsone helps you!
I have not taken it and surprisingly, not many on LN seem to have either as past posts haven't gotten many responses.
Maybe someone will chime in soon
All the best!
Posted by jsnyde2 (Member # 7888) on :
I guess I'll be the guinea pig
Posted by Jordana (Member # 45305) on :
If you search dapsone here you'll see some people who had it -- I think they were patients of Dr. H.
Not much in the way of testimonials though. Seems like response was mixed.
Posted by yanivnaced (Member # 13212) on :
The Use of Dapsone as a Novel “Persister” Drug in the Treatment of Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome
I would be interested to see how you do with it! I hope you keep us posted...
Posted by Haley (Member # 22008) on :
What are the adverse side affects?
Posted by jsnyde2 (Member # 7888) on :
can cause red blood cells to burst
Posted by steve1906 (Member # 16206) on :
. Dapsone> Some side affects include:
nausea, vomiting, loss of appetite, dizziness, blurred vision, ringing in the ears, headache, insomnia, or increased sensitivity of the skin to sunlight.
Tell your doctor if you have unlikely but serious side effects of dapsone including:
unusually fast heartbeat, unusually fast breathing, bluish lips or skin, chest pain, mental/mood changes, muscle weakness, or difficulty urinating
Been there, done that back in Fall 2015 with the two other meds that were supposed to eradiicat the persisters. No improvements. Don't hang your hopes on this. If it worked so well, we would have been hearing about it all year.
Posted by bluelyme (Member # 47170) on :
Its close to a sulfa too so careful if you have cbs mutations...keep us posted
Posted by Christopher J (Member # 46401) on :
Wow that was a hell of a study posted above for Dapsone. You all have got me excited now. You better keep us all upto date Mister. Did your LLMD also give you standard antibiotics as well? In the study I am seeing they added it to a traditional regimen. Im bookmarking this page!
Posted by beck (Member # 43653) on :
I started Dapsone in June and it is the first antibiotic I have taken that actually makes me feel better, as they usually make me feel worse.
It hasn't been a miracle cure, but I'm grateful for any improvement I can get.
You do have to make sure that you carefully monitor your methemoglobin levels, as well as your hemoglobin, hematocrit, and red blood cell count, as Dapsone can cause anemia.
My doctor has me get a methemoglobin level test and CBC and CMP labs run every two to three weeks.
I hope that you will find some improvement with it also.
Posted by jsnyde2 (Member # 7888) on :
I take Doxy for a week, then add in Ceftin for a week, then add in Dapsone, and then continue all three for 4 weeks. I'm just on 1st week with Doxy, there was a pre-week getting my gut ready with immune support.
Blue - help - what is cbs mutations? How do I know if I have them?
Posted by jsnyde2 (Member # 7888) on :
Beck - glad to hear you feel better on Dapsone. I know about the methemoglobin levels, hemoglobin, etc...my regular MD is working in conjunction with LLMD to order these tests so my insurance pays!
Posted by amberlin96 (Member # 11535) on :
Dapsone guinea pig here too. I have a sulfa sensitivity but am able to tolerate it in low doses trying to gradually work up which is basically due to the intense herx. I also take a few things for the sulfa sensitivity. This isn't a classic sulfa drug but a relative I guess you could say.
Posted by bluelyme (Member # 47170) on :
Cbs is the genetic markers for transulferation pathways ..23 n me then mthfr.com and there are others to see how you detox how your l Iiver works ,methylation etc etc
AmberljnThat is interesting you are doing ok with the dapsone. .i just got script but have not taken it yet ...
Posted by tickbite666 (Member # 43399) on :
The side effect listed by Steve aren't that bad... its how I feel on a good day and I've never tried Dapzone.
Posted by unsure445 (Member # 15962) on :
Was Dapsone helpful for you at all JSNYDE2? Hope it went well with no side effects. Just curious how you are.
Posted by garnet10 (Member # 48181) on :
quote:Originally posted by tickbite666: The side effect listed by Steve aren't that bad... its how I feel on a good day and I've never tried Dapzone.
Best response ever!
Posted by Haley (Member # 22008) on :
Looking forward to seeing more posts on this.
Posted by amberlin96 (Member # 11535) on :
Update on dapsone...it definitely hits something hard! I started it and had a very recognizable herx within the first few doses. The herx was actually so bad I had to back off and go much slower..
I started back up at one and herxed 2 days later with pain and pots mostly. I also had to work it around my part time work schedule so I didn't have the luxury of just riding it out in bed.
I got up to 3 doses per week...sad I know but the herxed were just too bad.
Then I had to take a two week break from all ABC and probiotics for a Comp Stool Analysis as weight loss has been a huge issue.
I started it back up after this but it was just too miserable of a drug for me at this time.
May revisit in the future, and may not.
After reading Scott Forsgrens notes from recent ILADS conference, i believe he noted Dr H said people with sulfa sensitivity should not take dapsone, which this is me even though going in my LLMD knew this and upped my methyl folate as well as Vit E as precautions. Also did CBCs.
Dr H also mentioned that 2/3 of his patients on this felt better but herxing was extreme.
Current status: CONFUSED lol. My C4a has dropped from 4500 in April to 525 as of last test in November.
I'm feeling worse than when I started back on treatment and have gone back to Clarith this time with Alinia and Plaquenil plus adding ceftin.
Clarith helps me feel better and brings a few symptoms from a 9 to about a 2....this combined with the low C4a is making me lean toward Bart being my predominant problem right now.
I'm sure we will make changes at my next appt in January.
Sorry if I got a bit off topic but my point is dapsone is very powerful and if you don't have sulfa issues and also have been on many combos for a long time, you may be able to handle and should really consider it with close monitoring for anemia.
Best wishes in this hellish disease!
Posted by foxy loxy (Member # 47053) on :
very interesting amberlin96 thanks for posting! So sorry it was so rough for you.
makes you wonder though, if it truly helps in the end or if it just aggravates the immune response in some negative way...
Posted by jsnyde2 (Member # 7888) on :
My update is that my LLMD and I decided against Dapsone. My gut (instinct) was telling me no, because of the anemia risk, (there's a big word for what can happen and I can't recall it.)
And I really am not that sick, not nearly as sick as some of you Lymies out there. So decided not to go so extreme. My LLMD put me on a sulfa for my 3rd Abx (Doxy and Ceftin too.)
I had been feeling pretty good until I took a few days off cuz of the runs. Starting back up now.
Posted by amberlin96 (Member # 11535) on :
Glad to hear you're feeling pretty good.
Posted by jsnyde2 (Member # 7888) on :
Thanks Amberlin. your info was interesting. Do you have to take blood and liver enzyme tests while on Dapsone?
Posted by amberlin96 (Member # 11535) on :
I did CBC to keep an eye on possible anemia. Since I could never get high enough on my dosing I didn't have to do more than that.
Posted by unsure445 (Member # 15962) on :
jsnyde2, I hope you rebound back to feeling pretty good, quickly!
Foxy loxy, you raise a great point. I wonder if many lyme and co-infection treatments aggravate the immune response in an unnecessary way.
If I skip a day or two of herbs I feel great on those days. When I take them, symptoms occur about 2 hours after on most days and I feel cruddy.
Makes me wonder if my immune system would handle what's left. Hmmm.. maybe an occasional trial off of treatment is worthwhile. Or at minimum lowering the dose to find a happy medium.
Sorry for jumping in on this post and getting off topic.