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Just an update for everyone. [My Dapsone Journey]

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Posted 3/10/2018 7:24 PM (GMT 0)

LymeSick 🌟 said...
Thank you Girlie, I'll be careful!

I am a bit concerned about my blood levels, I'm not good at math, but I figured if I take 8 x 300mCg that's 2400mCg (or 2.4 MG), which is still nowhere near the 30, but I hope that by the time I do my blood work next week I can kind of estimate if I should go higher or not. I'm a bit weary of taking 30MG off the bat.

So you're trying to gauge it right now...and see where you're at. So, it will be a month since you last had blood work levels done?
Curious - what was your level of Folate prior to starting? Do you have enough 'banked' just in case you're losing it rapidly?
Posted 3/10/2018 9:21 PM (GMT 0)

hammer8 said...
I am currently on day 4 of 25mg dapsone, and it has given new meaning to the term herxing. My neuro symptoms and malaise are at an all time high. However, I am extremely optimistic about the treatment.

Lymesick - have you talked with your doctor about trying 200mg? That is what Dr. H is trialing now, with the idea that a month at 200mg is the best current chance for what he is calling a "cure." I am doing 25mg for a week, 50mg for a week, 100mg for a week, then 200mg for a month.

I feel that there is an unnecessary fear of dapsone on the internet and this forum. As is indicated in the passage lymesick quoted, as well as everything else I have read from Dr. H, IF you take the precautionary measures and are vigilant about blood tests, you will be fine. You may need to come off of the meds, but all is reversible. Dapsone is generally taken at 100mg for other diseases, and even without the precautionary measures, these people tend to be fine. The one thing I have heard stressed however, is to NOT do ozone while on dapsone.

I think I’d be willing to try it - seems to be less risk than the fluoroquinolones from what I’ve read so far.
Plus, since this is a relatively new treatment for LD - I think the Dr.’s are monitoring patients closely as they also want good outcomes - maybe this will have a high success rate of remission.

Gives us hope.
Posted 3/10/2018 10:27 PM (GMT 0)
Hi Girlie, I actually didn't do any labwork the last months, so I'm hoping I have enough Folic acid left before I do my testing next week. Maybe I'll take a higher dose sooner.

Hammer8 thank you so much for that information! I had no idea there was a 200mg study going on. Is there anywhere I can find more info? I'm totally willing to try that. In fact, after reading your comment, I think I might try it next week. But I want to be on one week on 100mg first. And labwork first.
Posted 3/11/2018 4:08 AM (GMT 0)

LymeSick 🌟 said...
Hi Girlie, I actually didn't do any labwork the last months, so I'm hoping I have enough Folic acid left before I do my testing next week. Maybe I'll take a higher dose sooner.

Hammer8 thank you so much for that information! I had no idea there was a 200mg study going on. Is there anywhere I can find more info? I'm totally willing to try that. In fact, after reading your comment, I think I might try it next week. But I want to be on one week on 100mg first. And labwork first.

You will let your Dr know if you go to 200, right?
Posted 3/11/2018 9:30 AM (GMT 0)

HealMe123 said...
Wishing you the best of luck!

I just started on a protocol with Dapsone and (a drug similar to) Rifampin as well - Rifabutin....

Pulsing Dapsone (5 days a week) - gradually building (25 mg/day first week, 50 mg/day second week, 75 mg/day third week, and 100 mg/day thereafter)

Taking Rifabutin everyday - Adding in pyrazinamide next week!
Before starting the dapsone, I had 3 weeks of only Coartem.....

You are taking dapsone and pyrazinamide at the same time? I have never heard of that. Could you tell me a little bit more about your protocol and how it is working for you? My doctor just prescribed me pyrazinamide - 1500mg / day. Thanks!
Posted 3/12/2018 3:33 AM (GMT 0)
Hi Girlie!

Yes definitely! I will let my doctor know! Thank you so much for your help!

Also here's my update for today:

Day 4 of Dapsone

Still on 100mg, everything the same as yesterday. Herx still gone. No signs of side effects. Starting to wonder if most of my Lyme is hidden in biofilms. I used to herx so much in prior treatments, not sure what's going on. Will start to research Biofilm supplements today. Planning on scheduling my blood work sooner than a week.
Posted 3/12/2018 4:14 AM (GMT 0)
Re: biofilm supplements - I will be taking Xylitol and lactoferrin daily for on week on my next cycle,
Posted 8/16/2022 10:12 PM (GMT 0)
I have Babesia my DR that follows Horowitz protocol gave me dapsone 25 mg I started it 2 weeks ago and Herxing like crazy nausea weakness cant function constantly crying . I have this Babesia already 2 years just found out about it. is it normal ? how long can it take? also should I take it with food or with out food? the DR prescribed me nystatin. didn't take it yet. can it help?
Posted 8/18/2022 11:10 AM (GMT 0)

SamBernie said...
I have Babesia my DR that follows Horowitz protocol gave me dapsone 25 mg I started it 2 weeks ago and Herxing like crazy nausea weakness cant function constantly crying . I have this Babesia already 2 years just found out about it. is it normal ? how long can it take? also should I take it with food or with out food? the DR prescribed me nystatin. didn't take it yet. can it help?

Welcome to the forum.
I have taken dapsone - it was part of Dr J’s Bartonella/Persisters protocol.
Without checking my notes - I think the dapsone dose was 100 mg but I herxed so bad - it was reduced to 50 mg.
(I mean really really bad herx)
I was also taking Rifabutin with it and minocycline and Ceftin.
I herxed on the protocol even after lowering the dapsone to 50 mg.

I take all my abx with food.

And probiotics is a must - I take a few different types of probiotics.
Posted 8/18/2022 6:20 PM (GMT 0)
SamBernie,

The Nystatin is an antifungal. You need to take it to help prevent yeast overgrowth caused by antibiotic usage. It would also be good to take Sacchromyces boullardii with a good probiotic several hours away from your antibiotics. S. boullardii is a beneficial yeast that can also combat Candida and pathogenic yeast. Nystatin will kill beneficial yeast like antibiotics will kill beneficial bacteria, so it’s important to replenish the good.

Florastor is a brand of Sacchromyces boullardii that is easily available but expensive. I use Orthomolecular brand, which is higher dose and more for the money. I get it from Fullscript through my provider. Ask your provider if they have a Fullscript account and can give you access. You may be able to go directly to Fullscript to look for a provider who can help you if needed. Fullscript enables patients to buy quality supplements at a reduced price and to buy supplement brands that are only available through a health provider.

Post Edited (WalkingbyFaith) : 8/18/2022 11:25:47 AM (GMT-7)

Posted 8/22/2022 12:59 AM (GMT 0)
i have a very serious problem taking probiotic i tried so many and didn't work. I am taking now pre biotic and its working. can anybody give me an idea
Posted 8/22/2022 1:29 AM (GMT 0)
Sam,
What happens when you take probiotics?
Posted 8/22/2022 1:40 AM (GMT 0)
I feel terrible . like an allergy reaction i feel toxic and weak and nauseous. i wish there is is one probiotic with out any side effects for me.
Posted 8/22/2022 1:48 AM (GMT 0)
Have you tried Megaspore?
Posted 8/22/2022 5:23 PM (GMT 0)

SamBernie said...
I feel terrible . like an allergy reaction i feel toxic and weak and nauseous. i wish there is is one probiotic with out any side effects for me.

Have you tried kefir or just ones in pill or capsules?

You can buy kefir at the grocery store.
Also sauer kraut is good for the gut. (I think it’s a prebiotic.)
Posted 12/27/2022 2:14 AM (GMT 0)
I am taking dapsone 100 mg daily but my methemoglobin keeps on going up now i am taking 200 mg Methelyn blue daily . what do you think? will the mb resolve the issue? is it normal to feel terrible even men your methemoglobin is slightly elevated?
Posted 12/27/2022 5:54 AM (GMT 0)
Ok

SamBernie said...
I am taking dapsone 100 mg daily but my methemoglobin keeps on going up now i am taking 200 mg Methelyn blue daily . what do you think? will the mb resolve the issue? is it normal to feel terrible even men your methemoglobin is slightly elevated?


I think you should have a discussion with the doctor who is treating you.
Posted 12/27/2022 2:45 PM (GMT 0)
all probiotics made my gut symptoms and then my systemic symptoms worse, not better

i think its pretty common if your gut is messed up and reactive that the last thing it wants is more new bacteria to deal with

this seems common in the lyme-bart world where people have gut issues already - and in general is a known thing in the functional medicine world also for people with general gut issues
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