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Attempting Dr. Horowitz's double dapsone protocol

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Posted 1/25/2021 8:17 PM (GMT 0)
I figured I'd make a thread so others curious about this protocol can get a first hand experience. Probably won't update every day but will make an effort to update periodically. I will link Horowitz's paper to the bottom of this post so everyone can see what the protocol looks like and what led him to believe it could be an effective protocol. I'm mostly following Dr. H's protocol step by step but my doc did want to add in LDN and Tagamet.

I'm on day 7. So far I have been less nauseous than I thought I would have been. The protocol calls for SO MANY PILLS. I'm having to be very organized lol. There have been times where I've had nausea but it has passed thus far. Overall, I have been a little more herxy and tired the last few days but nothing too bad. So far fatigue has been the worst side effect/symptom. The dapsone starts at a low dose. 25mg the first week. 50mg the second, 75mg the third, 100mg the fourth, and then 200mg for a month. That's the only thing I'm a little nervous about.

I've done so much treatment the last few years it is tough to tell exactly what my issue still is. I'm not sure if Lyme is a big problem still. Bart seems to be by symptoms but it's tough to tell. After I get done with this protocol I will probably send my blood to ArminLabs as my doctor believes that their Elispot test is the best way to track treatment progress.

https://www.mdpi.com/2079-6382/9/11/725
Posted 1/25/2021 8:49 PM (GMT 0)
Good luck. Thank you for updating as you go through the protocol. I’m sure it will help many.
Posted 1/25/2021 8:49 PM (GMT 0)
Thanks for posting. I will subscribe and early await your updates.

I previously attempted Dapsone and stopped because of a mild worsening in symptoms, but I am considering asking my doctor for the same published protocol as you.

What are your test results like? Do you have an idea of which (if any) co-infections you might have?

There is a group of Facebook called "Dapsone and Lyme" that you may be interested in joining, if you are not there already.
Posted 1/25/2021 9:28 PM (GMT 0)
also interested in following your progress - thanks for posting - will subscribe

I have a lot of time for Horowitz - I think he's as good as they come in terms of Lyme doctors

I even have a big pot of 1000 Dapsone tablets ready to go - along with a number of other ABX - but am trying an intensive herbal approach plus LDN at the moment so I have quite enough going on for the time being.

all the very best with the program!
Posted 1/25/2021 10:17 PM (GMT 0)

Adam B said...
Thanks for posting. I will subscribe and early await your updates.

I previously attempted Dapsone and stopped because of a mild worsening in symptoms, but I am considering asking my doctor for the same published protocol as you.

What are your test results like? Do you have an idea of which (if any) co-infections you might have?

There is a group of Facebook called "Dapsone and Lyme" that you may be interested in joining, if you are not there already.

Appreciate the heads up on the FB group.

I'm not sure what my active infections are. I likely have Bart as I get the Bart "scratches" and other Bart like symptoms. I've tested positive for Babesia in the past, but no tests for that within the last few years. I had high Lyme scores through Arminlab's EliSpot before I started taking DSF around a year and half ago. My IGM/IGG EBV always comes back elevated. This Dapsone protocol seems focused on Lyme but hits everything.
Posted 1/26/2021 10:25 PM (GMT 0)
Appreciate your post!

I’m on a modified dr Horowitz protocol. I could not take the doxy. I was too nauseous on ot so I’m on azithromycin instead. Every other week. Also rifampin and dapsone. I’m only taking 25 mg right now. I’m afraid to go up.
Dr H has some things that my dr did not put me on.
He does not have me on methylene blue, leucovorin, plaquenil, or Berberine. He also did not prescribe nystatin but I’m taking it anyway because I had it in the house.

So far I’m not any better. I was on the protocol for 5 weeks then developed thrush and had to go off for 3 weeks.
I just went back on 2 weeks ago.

I did get up to 50 mgs of dapsone before the thrush but now I’m afraid if I go from 25 to 50 I’m going to herx. I can’t take feeling worse then I am already.

Lymie24. What are your symptoms.

My symptoms are lightheaded feeling, off balance, ( I sway when standing still) head pressure, head tingling, eye twitching off and on my legs and lower back seem affected. I’m having a very hard time walking, a internal shaky feeling. Etc etc Mostly neuro and muscular and some digestive and stomach issues.
Posted 1/27/2021 2:50 AM (GMT 0)

aphysicalwreck said...
Appreciate your post!

I’m on a modified dr Horowitz protocol. I could not take the doxy. I was too nauseous on ot so I’m on azithromycin instead. Every other week. Also rifampin and dapsone. I’m only taking 25 mg right now. I’m afraid to go up.
Dr H has some things that my dr did not put me on.
He does not have me on methylene blue, leucovorin, plaquenil, or Berberine. He also did not prescribe nystatin but I’m taking it anyway because I had it in the house.

So far I’m not any better. I was on the protocol for 5 weeks then developed thrush and had to go off for 3 weeks.
I just went back on 2 weeks ago.

I did get up to 50 mgs of dapsone before the thrush but now I’m afraid if I go from 25 to 50 I’m going to herx. I can’t take feeling worse then I am already.

Lymie24. What are your symptoms.

My symptoms are lightheaded feeling, off balance, ( I sway when standing still) head pressure, head tingling, eye twitching off and on my legs and lower back seem affected. I’m having a very hard time walking, a internal shaky feeling. Etc etc Mostly neuro and muscular and some digestive and stomach issues.

Nice! Glad we can go through this together (but also unfortunate). My symptoms are too many to list, but all the bad bugs got into all the systems before I figured out what was happening 5 years ago. Neuro, Gastro-intestinal, lots of pain in joints/muscles, insomnia, fatigue etc. etc. A year on DSF did seem to help somewhat. I went from having almost no good days being bed/couch ridden 50% or so of the time to having better spans of days. Still not great, but some periods I feel so-so. Unfortunately I also relapse back into the darkness. It feels like a cycle.

I'm not a doctor and many of these meds are new to me, but not taking leukovorin while on Dapsone seems a little worrying to me. Are you taking MTHF? Again, not an expert, but my understanding at this point is dapsone interferes with folate metabolism and we need to take medicines/supps that mitigate that. Anemia is a possible result. Maybe it's not a big deal but might worth be mentioning to your doc.
Posted 1/27/2021 3:23 AM (GMT 0)
Lymie.

At least you are a little better. Anything is better then nothing!!

I’m worried too about the anemia. But I’m not taking a high dose of dapsone yet. I’m also worried about the gut. That’s the reason I never wanted to take antibiotics.

I’m taking methyl folate 10 mg.

This is what I take also:

Curcumin
Ldn
Cbd oil
Oil of oregano
Biocidin
Pro biotic
Adrenal glandular
Lipsomal glutathione
Resveratrol
Vit c 2000 mg
Vit d 4000 iu

Did you have any of my neuro systems that I listed?

Do you have any positive testing for Lyme and co infections?

What are the supplements you are taking? Exactly what’s on dr Horowitz’s protocol? So you see Dr Horowitz?
Posted 1/27/2021 6:36 AM (GMT 0)
“ I’m taking methyl folate 10 mg. “

Is Leucovorin absorbed better than methyl folate?
.. or what is the difference?
Posted 1/27/2021 6:43 PM (GMT 0)

aphysicalwreck said...
Lymie.

At least you are a little better. Anything is better then nothing!!

I’m worried too about the anemia. But I’m not taking a high dose of dapsone yet. I’m also worried about the gut. That’s the reason I never wanted to take antibiotics.

I’m taking methyl folate 10 mg.

This is what I take also:

Curcumin
Ldn
Cbd oil
Oil of oregano
Biocidin
Pro biotic
Adrenal glandular
Lipsomal glutathione
Resveratrol
Vit c 2000 mg
Vit d 4000 iu

Did you have any of my neuro systems that I listed?

Do you have any positive testing for Lyme and co infections?

What are the supplements you are taking? Exactly what’s on dr Horowitz’s protocol? So you see Dr Horowitz?

Hmmm....I have a different take on the gut. It's a potential issue on antibiotics, but for myself, consistent probiotic use has mitigated the issues. I've been off and on antibiotics for 5 years now. Unfortunately, antibiotic therapy in itself hasn't been enough for me, but it has helped some. The potential issues from abx use hasn't outweighed my real life issues from Lyme thus far.

Yes, I have experienced all those neuro issues that you describe. Internal tremors, vision being off, loud noises or too much stimulation in front of me intensifying symptoms, twitches all over body, inflammation in eyes, stabbing head pains. I have noticed since starting this protocol that the pain in my hip joints, and the sciatica like pain (pain in lower back that radiates down back of legs) have returned and with a vengeance.

I haven't performed a test in quite some time as they are super expensive and sometimes useless. The last test I took was ArminLab's Elispot which my Dr. believes is a good way to track treatment progress. That was the only test I ever took that definitely displayed positive for Lyme (Burgondofei (sp?) and Miyamoti). Previously, western blots had came back mixed but not CDC positive. Have tested positive for babesia in the past but that was several years ago. Have never had a Bart positive test, however, never have performed the gold standard in Galaxy. Out of all the co-infections I know I have EBV due to positive IGM/IGG tests going back years. I'm not sure how much of a role that plays in my illness. I'm also confident I have Bart due to my symptom profile and Bart rashes.

I do not see Dr. Horowitz. My doctor is an established LLMD and was willing to try this protocol. I am mostly following Dr. H's protocol to a T. The only changes are my doc wanted to add in tagamet and LDN, not taking mycelex troche, and I'll probably use NAC and Glutathione intuitively versus how Dr. H's prescribes it.
Posted 1/27/2021 7:52 PM (GMT 0)
Lymie.

Do you live in the metro area? If so, what dr do you see?
Posted 1/28/2021 6:43 PM (GMT 0)

aphysicalwreck said...
Lymie.

Do you live in the metro area? If so, what dr do you see?

Yes. I see Dr. Kalb at Cool Spring Family medicine. He's a solid LLMD who has been treating Lyme for, I think, over a decade. He's willing to try new things when I bring him new research like DSF and the dapsone protocol.
Posted 1/28/2021 6:58 PM (GMT 0)
Hi all,

Few of you know me.

Been a bit MIA but I’ll quickly recap.

Did DSF, I would say I got to about 70% from that. I think the remaining symptoms were from Bart so I started the DDD at beginning of December.

Done next week.

So far I feel pretty bad. I’ve spoken to a few who said similarly it’s like DSF, better when you are off.

No real improvement in anything.

I’m taking the same protocol but with Mino instead of Doxy. Rifampin + DDD.

I think you will have to get on leuco when you increase the dose. It can be pretty heavy on your blood.

But yeah from my understanding it’s not a gradual improvement so don’t get discouraged by that. Some even said 2-3 months after before they saw improvements.

I just can’t wait to be done. It’s just draining.
Posted 1/28/2021 7:23 PM (GMT 0)

steelogreens said...
Hi all,

Few of you know me.

Been a bit MIA but I’ll quickly recap.

Did DSF, I would say I got to about 70% from that. I think the remaining symptoms were from Bart so I started the DDD at beginning of December.

Done next week.

So far I feel pretty bad. I’ve spoken to a few who said similarly it’s like DSF, better when you are off.

No real improvement in anything.

I’m taking the same protocol but with Mino instead of Doxy. Rifampin + DDD.

I think you will have to get on leuco when you increase the dose. It can be pretty heavy on your blood.

But yeah from my understanding it’s not a gradual improvement so don’t get discouraged by that. Some even said 2-3 months after before they saw improvements.

I just can’t wait to be done. It’s just draining.

steelogreens!,

Thanks for the update. Reading your post I feel like we are in very similar positions. I'm on day 10 and this is my 3rd day at 50mg. I'm starting to get those same symptoms I did on DSF. Extremely tired, not able to do much, requiring a ton of sleep, intensifying symptoms, increasing depression etc. I slept 10 and half hours last night. Thankfully, and this is one of the things I liked, the protocol only calls for 2 months. 28 days to ramp up to 100mg. Then a month at 200mg. That would be 48 more days for me. I can hold on for 48 days. It helps when you have a benchmark.

The big difference I have noticed so far is the DSF herx wrecked me by day 10 and I don't feel that yet on dapsone. To be fair, I went straight in at 500mg DSF. I worry that DSF took care of my Lyme, and it's Bart that is left. Perhaps I'm barking up the wrong tree with this dapsone protocol even though it does have elements that hit Bart.
Posted 1/28/2021 7:29 PM (GMT 0)
Let’s hope so friend.

I’m still functional at the highest dose which is good.

I really hope the twitching and eye symptoms go away. I’m ready to just end this chapter of my life.
Posted 2/1/2021 6:50 PM (GMT 0)

Lymie24 said...

steelogreens said...
Hi all,

Few of you know me.

Been a bit MIA but I’ll quickly recap.

Did DSF, I would say I got to about 70% from that. I think the remaining symptoms were from Bart so I started the DDD at beginning of December.

Done next week.

So far I feel pretty bad. I’ve spoken to a few who said similarly it’s like DSF, better when you are off.

No real improvement in anything.

I’m taking the same protocol but with Mino instead of Doxy. Rifampin + DDD.

I think you will have to get on leuco when you increase the dose. It can be pretty heavy on your blood.

But yeah from my understanding it’s not a gradual improvement so don’t get discouraged by that. Some even said 2-3 months after before they saw improvements.

I just can’t wait to be done. It’s just draining.

steelogreens!,

Thanks for the update. Reading your post I feel like we are in very similar positions. I'm on day 10 and this is my 3rd day at 50mg. I'm starting to get those same symptoms I did on DSF. Extremely tired, not able to do much, requiring a ton of sleep, intensifying symptoms, increasing depression etc. I slept 10 and half hours last night. Thankfully, and this is one of the things I liked, the protocol only calls for 2 months. 28 days to ramp up to 100mg. Then a month at 200mg. That would be 48 more days for me. I can hold on for 48 days. It helps when you have a benchmark.

The big difference I have noticed so far is the DSF herx wrecked me by day 10 and I don't feel that yet on dapsone. To be fair, I went straight in at 500mg DSF. I worry that DSF took care of my Lyme, and it's Bart that is left. Perhaps I'm barking up the wrong tree with this dapsone protocol even though it does have elements that hit Bart.


How you doing?

The DDD protocol should be quite good for Bart. Dapsone + Rif are great for Bart.

I’m on my last week. I’m just okay. Herx hits me with fatigue some days worse than others but I’m functional. The depression sucks though from the rifampin.

No improvement yet from the floaters, muscle twitches but I’ve been told the improvements come after like DSF. Here’s hoping.
Posted 2/1/2021 8:28 PM (GMT 0)
Are you all taking leucovorin? Also what about methylene blue?
Posted 2/1/2021 8:46 PM (GMT 0)

aphysicalwreck said...
Are you all taking leucovorin? Also what about methylene blue?


Yes to Leucovorin. MB you only take if your blood comes back and shows you need it.

I only have 4 days left so I think I’m good.
Posted 2/1/2021 10:33 PM (GMT 0)
I know someone who has Bart is takes MB and rifampin. Not dapsone.

She said it was a game changer for her.
Posted 2/2/2021 3:37 PM (GMT 0)
Today is day 15 of the protocol. The last week I have been noticeably more fatigued and generally feeling unwell. I’m not able to do much. Previous to this my health was cycles of horribleness and not as horrible. During the not as horrible periods I was able to develop a semi-consistent exercise routine. I think I’m going to lose my conditioning on this protocol.

The part week I’ve noticed more frequent stabbing head pains. Some have been intense and left me with a weird taste in my mouth afterwards. This has happened to me before but it’s been awhile. Pain in hips and sciatica like pain that increased on DD has come and went. Nausea comes and goes. When it comes it’s very uncomfortable. I can be okay before eating but after eating and taking all my meds I get nauseous a couple hours after. Inflammation in eyes, pain in joints occasionally, twitching, and pond and needles in finger/toes. However, pain in joints and muscles, lymph node pain, pain between shoulder blades have decreased since being on protocol.

In general, the worst part so far is the weakness and fatigue. Sometimes I feel like I’m out of breath after minimal effort activities. I expect this fatigue to last until I stop the protocol. I’m still worried that Lyme is no longer my issue and it is possibly Bart. After 15 days of my previous DSF treatment I was herxing badly. I could simply feel the toxicity of the Lyme bacteria being killed off. I haven’t felt that yet with dapsone.
Posted 2/2/2021 5:12 PM (GMT 0)

Lymie24 said...
Today is day 15 of the protocol. The last week I have been noticeably more fatigued and generally feeling unwell. I’m not able to do much. Previous to this my health was cycles of horribleness and not as horrible. During the not as horrible periods I was able to develop a semi-consistent exercise routine. I think I’m going to lose my conditioning on this protocol.

The part week I’ve noticed more frequent stabbing head pains. Some have been intense and left me with a weird taste in my mouth afterwards. This has happened to me before but it’s been awhile. Pain in hips and sciatica like pain that increased on DD has come and went. Nausea comes and goes. When it comes it’s very uncomfortable. I can be okay before eating but after eating and taking all my meds I get nauseous a couple hours after. Inflammation in eyes, pain in joints occasionally, twitching, and pond and needles in finger/toes. However, pain in joints and muscles, lymph node pain, pain between shoulder blades have decreased since being on protocol.

In general, the worst part so far is the weakness and fatigue. Sometimes I feel like I’m out of breath after minimal effort activities. I expect this fatigue to last until I stop the protocol. I’m still worried that Lyme is no longer my issue and it is possibly Bart. After 15 days of my previous DSF treatment I was herxing badly. I could simply feel the toxicity of the Lyme bacteria being killed off. I haven’t felt that yet with dapsone.


Sounds similar to me.

The nausea, eye pain, headaches. Generally out of it stuff.

This protocol should be good for Bart so don’t worry.

Last week and I feel about the same as you. I had some really bad periods as I went to the double dose but that passed.

I’m not great but functional.

Remember - DSF could have also kicked out a lot of the infection so that could also be why less herx from borrilea.

Good luck! I’m around. I’m done in Thursday. Will keep you updated.

Still no floater improvement. I hope that’s a post thing but let’s see.
Posted 2/2/2021 6:56 PM (GMT 0)

steelogreens said...

Lymie24 said...
Today is day 15 of the protocol. The last week I have been noticeably more fatigued and generally feeling unwell. I’m not able to do much. Previous to this my health was cycles of horribleness and not as horrible. During the not as horrible periods I was able to develop a semi-consistent exercise routine. I think I’m going to lose my conditioning on this protocol.

The part week I’ve noticed more frequent stabbing head pains. Some have been intense and left me with a weird taste in my mouth afterwards. This has happened to me before but it’s been awhile. Pain in hips and sciatica like pain that increased on DD has come and went. Nausea comes and goes. When it comes it’s very uncomfortable. I can be okay before eating but after eating and taking all my meds I get nauseous a couple hours after. Inflammation in eyes, pain in joints occasionally, twitching, and pond and needles in finger/toes. However, pain in joints and muscles, lymph node pain, pain between shoulder blades have decreased since being on protocol.

In general, the worst part so far is the weakness and fatigue. Sometimes I feel like I’m out of breath after minimal effort activities. I expect this fatigue to last until I stop the protocol. I’m still worried that Lyme is no longer my issue and it is possibly Bart. After 15 days of my previous DSF treatment I was herxing badly. I could simply feel the toxicity of the Lyme bacteria being killed off. I haven’t felt that yet with dapsone.


Sounds similar to me.

The nausea, eye pain, headaches. Generally out of it stuff.

This protocol should be good for Bart so don’t worry.

Last week and I feel about the same as you. I had some really bad periods as I went to the double dose but that passed.

I’m not great but functional.

Remember - DSF could have also kicked out a lot of the infection so that could also be why less herx from borrilea.

Good luck! I’m around. I’m done in Thursday. Will keep you updated.

Still no floater improvement. I hope that’s a post thing but let’s see.

Congrats on being close to done. I hope you get tons of benefit from this protocol. I just upped my dosage to 75mg today. Full speed ahead
Posted 2/22/2021 7:12 PM (GMT 0)
Sorry, it's been awhile since I updated.

So, I had a bad episode on this protocol that sent me to the hospital. I was on day 26 of the protocol when this episode happened. The last 14 days or so I was on the protocol I felt more tired, and quickly became fatigued when attempting to exercise. The last 7-10 days I would check my blood oxygen daily. When I was feeling more fatigued it oscillated between lows 90s to mid 90s. At those numbers I did not worry. However, last Monday, being tired from laying around all day, I got up and did 20 bodyweight squats in my kitchen. My hear rate immediately took off. Quickly, I felt like I wasn't getting good breaths. I took my blood o2 and it oscillated between 85 - 90 I sat down in bed, put some heating blankets on me (sometimes that helps). I waited for an hour for my episode to pass but my heart rate never went down, my breathing never improved, and the longer it went on the more unwell and anxious I became. Finally, after over an hour, when I really was feeling it we called 911. At the hospital they gave me some saline and tested me for EKG, COVID, X-ray, blood tests. Everything came back good/negative. My blood O2 rose to the low 90s while I was in the hospital. After they watched me for a few hours they walked me around to make sure my blood O2 didn't drop and then released me. I stopped all meds at that point. A few days later i was feeling better and my blood O2 was back into the high 90s.

My LLMD has suggested doing the protocol every Monday, Wednesday, Friday, but honestly, I'm sick and tired of these aggressive treatments that have serious side effects. I haven't hopped back on the protocol yet and I'm unsure if I will.

I will say the protocol had alleviated many symptoms while I was on it. The main symptoms/side effects (other than ER incident) it caused for me was fatigue, muscle spasms, and increased pain in hip joints, lower back, sciatica like pain.
Posted 2/23/2021 12:03 AM (GMT 0)
Lymie - the doctors are practicing - on us.

My adrenals are still shot from too much rifampin for too long.

I wonder if lower doses of dapsone would chip away at your pathogen though over a longer period of time. Rotate other abx with it at normal doses.

These double doses are not good practice.

Many of these LLMDs seem to prescribe much more for much longer. I'm pretty sure this is what is turning off the conventional medical community towards PTLDS patients.
Posted 2/23/2021 2:37 AM (GMT 0)

carlnpa said...
Lymie - the doctors are practicing - on us.

My adrenals are still shot from too much rifampin for too long.

I wonder if lower doses of dapsone would chip away at your pathogen though over a longer period of time. Rotate other abx with it at normal doses.

These double doses are not good practice.

Many of these LLMDs seem to prescribe much more for much longer. I'm pretty sure this is what is turning off the conventional medical community towards PTLDS patients.

I’m personally afraid of that high dose of dapsone.

I would consider a lower dose longer term with other abx.



That’s just my opinion.
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