Dapsone/Daraprim - Cycle 3, 4, and 5 PLUS....

So, I am going to take the Daraprim and Dapsone today (along with the Rifabutin, Ceftin, cryptolepis, xylitol/lactoferrin)

I have just taken the Daraprim...will take the Dapsone later. They are both once daily dosing.

Have decided to do Tues/Thurs/Sat.

ummm...changing my mind again about the Dapsone.

I googled it - ie deaths...etc. It's bad. Not a lot of reported deaths but still some ...and some ugly/scarey photos of bad reactions.
Skin lesions...similar to what you see for SJS.

Darparim doesn't have the same risks...so maybe just no dapsone.
I just showed my husband some pictures on Dapsone sites and he told me not to take it.
Then he said "I don't want to see those pictures" lol.

tickbite666 said...
Girlie,

I spoke about Dapsone last week with my LLMD. There are only two items that she deems too dangerous to Rx to her Lyme patients.... Dapsone and Ivermectin. She said she recently discussed dapsone with Armin Schwarzbach, a Lyme researcher from Germany, and he rolled his eyes, tossed his papers in the air and said Dr H was crazy and Dapsone cannot work. Just sayin' .....

Ivermectin is dangerous? how so? many lyme patients take that...i hadn't heard any adverse effects...

Didn't your LLMD mention the fluoroquinolones?

I do believe the Dapsone works - as Dr. H and Dr. J have both had some good results with it.
Dr J has been prescribing it for at least 5 years now.

Why couldn't it work...it's an antibiotic....not sure why Dr. AS would say that?

But, even though I think it can work....I'm not willing to kill myself....and why I refused the fluoroquinolones...when Dr. J asked me if I was 'dead-set against ' them.

IDK - I'm probably just freaking out for no good reason.
Pre-lyme I never took any medications...no cough syrup...RARELY a tylenol....nothing.
And I can't seem to stop myself from googling 'Side effects' of every drug I'm prescribed.

Thanks, Tickbite for your Dr.'s opinion on them.....

From a conversation a few years back about Ivermectin my LLMD commented that it almost killed her best friend and put her in the hospital. So that would leave a lasting impression. Could have been an allergic reaction. Don't know all details.

She does prescribe fluoroquinolones though. I took levaquin a few years back, knowing the risks, and stopped after 19 days with sore Achilles tendon. Then I took cipro with no ill effects.

Just sharing.... I would give Dapsone a try myself if she offered. I was surprised by her comments.

Good luck with your decision.

Good luck Girlie!! I took dapsone, didn't have issues but we are all different. Trust your gut. My mom can't handle dapsone, herx is too strong. There are many ways to get better, sometimes certain medicines are too strong or problematic so we just have to improvise and look for other treatment avenues.

Ivermectin is supposed to be a very safe drug. Def hit my babesia, got really nasty herxes with it. Quinolones are way scarier imo.

I did Dapsone for 6 cycles and am doing Ivermectin going on 3 cycles now with zero issues.

I'm still doing Bactrim for over 2 years and I'm good (well my wife wouldn't say that lol).

My wife who is doing the same protocol as you Girlie is only doing the Daraprim so you should be fine if you are uncomfortable taking it.

Still I think we can sometimes get ourselves too crazy with reading all the horror stories of what some drugs can do.

It's like going to Amazon and looking at the product reviews. You will always find one star reviews and if you base your decisions on that you'll never buy anything!

I back you Girlie 1000% percent. If you don't want to take it, don't take it. You can always change your mind.

I think the LD50 for Ivermectin is something insanely high like 2g/kg which isn't even possible to inject that much into your body. I vaguely remember finding a study where they actually did give it to monkeys at that level and it didn't kill them, but they set that level anyway.

However I also remember seeing that Ivermectin has an interaction with Loa Loa and possibly other nematode -- the consequences were basically insta-death. On my first dosage, I had the symptom (I think it was a severe sore shoulder within 3-4 hours) and googled "Ivermectin + Shoulder" (Or something like that) and found out about the interaction. I stopped and waited 3-4 days and took it again and I did not have the problem. Given I did my research, and I was under the guidence of a doctor (who prescribed me Ivermectin) and I looked up the 1) Absoprtion Rate 2) LD50 3) Half life 4) Interaction with <> Every possible drug I had 5) everything else, I was able to balance a risk/reward and take it. It does work very well for me. There is also a interaction of Ivermectin and some animals, specifically dogs, with a genetic mutation that causes it to be posion -- I vaguely remember the gene being MDR1 or something. My dogs did not have it so I gave it to them and they are fine. But the one that they give to dogs that have the MDR1 gene (or whatever the gene is) is Moxidectrin. So that's when I got some of that and tried it -- and it is 10x stronger then Ivermectin. I can only take a 3mg dosage. It has a half life of 20-40 days vs 14hr for Ivermectin.

The one thing with the Epsom salt shower is that it has a method of action against nematodes. Yesterday I had some slight lyme itches and took a hot Epsom salt shower (1 cup magnesium sulfate/epsom salt) and the itching went away. It has to go deep in your skin. I am greatful that a simple thing like Epsom Salt can stop these itches. The Stevia NOW Organic extract, 1 tablespoon, also stop itches.

So since last Thursday I have been 100% antibiotic free. I am ONLY on ZHOU Garlic with Allicin C and Stevia, with a little Teasel root. I am on day 5. Previous to this I had switched from Penicillin G IV to Doxy, and was on the Doxy for 3 weeks. As you might know when you get on a new Antibiotic, you get a "honeymoon" period where things are fine for 3-6 weeks. I think I am on this honeymoon period. But also Girlie you said that the doxy increases the Persister cell growth 200% or something, I believe it and seen it on other sites. I believe the Lyme went into some kind of hidden mode when I was on the Doxy. I SHOULD be still taking it, but this is an experiment to see how long I can go on just 6x 500mg garlic with 5000mcg Allicin and Stevia until I get symptomatic. I have ordered 3 more bottles of Garlic, along with the same brand Turmeric and Cinnamon extract. I am trying to switch from ABX to herbs. I am going to keep track of how many days I can go without Doxy, then I am going to go back on the Doxy, hopefully establish a baseline, and then the number of days I can go without Doxy I will subract 3-4 days and pre-emptive cycle it again at that interval. This is a totally made up protocol hopefully my LLND won't get angry. If all else fails, I have always had improvement on Amox and if I have to Penicillin. I have made it this far on just 1 year of Amoxicillian, Penicillin and the 3-4 weeks of doxy with herbs. I know that all of our bodies are different -- different absorption rate, different ways of breaking down drugs, different side effects, different liver/kidney/blood, different strains of lyme, different co-infections but if there is anything you can borrow from my protocol please ask me details. I am feeling great and just want to help you. I know for sure I will go back to being symptomatic, but at least I have a 5 day victory so far.

Have you tried checking for new mold?
Have you tried Reverse Osmosis filter?
Are you doing daily Epsom Salt baths?
Are you washing your cloths with epsom salts to get rid of any nematodes?
What about Ivermectin and your doctor (sorry if we already talked about this)?
Do you have Bed bugs re-infecting you? Do you know if you are on ivermectin and bed bugs bite you, they die within 2-4 days? (With moxidectin you get a month)
Are you spraying the outside of your house with Pyrethins so that with the cold weather spiders don't come in?
Sorry if I seem to be going everywhere, I am trying to think of anything that can help.

oregonhay said...
I back you Girlie 1000% percent. If you don't want to take it, don't take it. You can always change your mind.

I think the LD50 for Ivermectin is something insanely high like 2g/kg which isn't even possible to inject that much into your body. I vaguely remember finding a study where they actually did give it to monkeys at that level and it didn't kill them, but they set that level anyway.

However I also remember seeing that Ivermectin has an interaction with Loa Loa and possibly other nematode -- the consequences were basically insta-death. On my first dosage, I had the symptom (I think it was a severe sore shoulder within 3-4 hours) and googled "Ivermectin + Shoulder" (Or something like that) and found out about the interaction. I stopped and waited 3-4 days and took it again and I did not have the problem. Given I did my research, and I was under the guidence of a doctor (who prescribed me Ivermectin) and I looked up the 1) Absoprtion Rate 2) LD50 3) Half life 4) Interaction with <> Every possible drug I had 5) everything else, I was able to balance a risk/reward and take it. It does work very well for me. There is also a interaction of Ivermectin and some animals, specifically dogs, with a genetic mutation that causes it to be posion -- I vaguely remember the gene being MDR1 or something. My dogs did not have it so I gave it to them and they are fine. But the one that they give to dogs that have the MDR1 gene (or whatever the gene is) is Moxidectrin. So that's when I got some of that and tried it -- and it is 10x stronger then Ivermectin. I can only take a 3mg dosage. It has a half life of 20-40 days vs 14hr for Ivermectin.

The one thing with the Epsom salt shower is that it has a method of action against nematodes. Yesterday I had some slight lyme itches and took a hot Epsom salt shower (1 cup magnesium sulfate/epsom salt) and the itching went away. It has to go deep in your skin. I am greatful that a simple thing like Epsom Salt can stop these itches. The Stevia NOW Organic extract, 1 tablespoon, also stop itches.

So since last Thursday I have been 100% antibiotic free. I am ONLY on ZHOU Garlic with Allicin C and Stevia, with a little Teasel root. I am on day 5. Previous to this I had switched from Penicillin G IV to Doxy, and was on the Doxy for 3 weeks. As you might know when you get on a new Antibiotic, you get a "honeymoon" period where things are fine for 3-6 weeks. I think I am on this honeymoon period. But also Girlie you said that the doxy increases the Persister cell growth 200% or something, I believe it and seen it on other sites. I believe the Lyme went into some kind of hidden mode when I was on the Doxy. I SHOULD be still taking it, but this is an experiment to see how long I can go on just 6x 500mg garlic with 5000mcg Allicin and Stevia until I get symptomatic. I have ordered 3 more bottles of Garlic, along with the same brand Turmeric and Cinnamon extract. I am trying to switch from ABX to herbs. I am going to keep track of how many days I can go without Doxy, then I am going to go back on the Doxy, hopefully establish a baseline, and then the number of days I can go without Doxy I will subract 3-4 days and pre-emptive cycle it again at that interval. This is a totally made up protocol hopefully my LLND won't get angry. If all else fails, I have always had improvement on Amox and if I have to Penicillin. I have made it this far on just 1 year of Amoxicillian, Penicillin and the 3-4 weeks of doxy with herbs. I know that all of our bodies are different -- different absorption rate, different ways of breaking down drugs, different side effects, different liver/kidney/blood, different strains of lyme, different co-infections but if there is anything you can borrow from my protocol please ask me details. I am feeling great and just want to help you. I know for sure I will go back to being symptomatic, but at least I have a 5 day victory so far.

Other medicines that have caused this condition are:

dapsone (Aczone), which can be used to treat conditions like acne, a type of dermatitis that causes blisters on your arms and buttocks, and a fungal lung infection in people with HIV/AIDS
antimalarial drugsnematodes?
What about Ivermectin and your doctor (sorry if we already talked about this)?
Do you have Bed bugs re-infecting you? Do you know if you are on ivermectin and bed bugs bite you, they die within 2-4 days? (With moxidectin you get a month)
Are you spraying the outside of your house with Pyrethins so that with the cold weather spiders don't come in?
Sorry if I seem to be going everywhere, I am trying to think of anything that can help.

Thanks for sharing.
I’m not looking for a new protocol - I am following dr J’s.

I am hoping to get rid of my last 7/8 symptoms.

Dr J prescribes Ivermectin - not for me yet. I’m on Alinia now.

I’m pretty sure it wasn’t me who said doxy increased persisters by 200%.
No I don’t have bedbugs reinfecting me.

We can’t get Permethrin here but we don’t have many spiders coming in - my husband usually comes running when he hears me scream and kills them.

I take Epsom salt baths regularly as a detox.

We don’t have any new mold (or old mold) in our house... that we know of.

Keeping you in my thoughts Girlie. The stress of these decisions can be so tough, especially when we know how nasty the herxes/reactions can get... fortunately there is more than one way to get well. But sometimes it takes a lot of trial and error with various therapies to figure out what works and what we can manage.

sebreg said...
Keeping you in my thoughts Girlie. The stress of these decisions can be so tough, especially when we know how nasty the herxes/reactions can get... fortunately there is more than one way to get well. But sometimes it takes a lot of trial and error with various therapies to figure out what works and what we can manage.

thanks Sebreg

Hoping you are doing ok...

I was just watching dr. H’s interview on news channel last month - he’s now doing 7 or 8 week high dose dapsone with other abx and that’s IT. No more long term abx. Did you watch that? He mentioned double dose dapsone - would that be 200 mg?!
https://youtu.be/2qncuuqpjpc

Dr. J during my last appointment mentioned what Dr. H was doing with the high dose dapsone. He said something like we'll see how it goes. Knowing Dr. J if there's success with doing this type of approach he has no problem trying it out with some patients.

I know you have to be closely monitored given that much Dapsone over that time period.