posted
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!
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
I would be interested to see how you do with it! I hope you keep us posted...
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
What are the adverse side affects?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
can cause red blood cells to burst
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
. 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
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
Posts: 1885 | From here | Registered: Jul 2012
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Its close to a sulfa too so careful if you have cbs mutations...keep us posted
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
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!
Posts: 173 | From USA | Registered: Aug 2015
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posted
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.
Posts: 91 | From USA | Registered: Apr 2014
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posted
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?
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
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!
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
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.
-------------------- Ill since 1998 DX 2005 Posts: 93 | From tampa, fl, usa | Registered: Apr 2007
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
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 ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
The side effect listed by Steve aren't that bad... its how I feel on a good day and I've never tried Dapzone.
Posts: 119 | From ground zero | Registered: Mar 2014
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posted
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!
-------------------- Ill since 1998 DX 2005 Posts: 93 | From tampa, fl, usa | Registered: Apr 2007
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posted
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...
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
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.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
Thanks Amberlin. your info was interesting. Do you have to take blood and liver enzyme tests while on Dapsone?
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
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.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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