Dapsone protocol

As I mentioned before, I would encourage you to read the other threads about dapsone.

https://www.healingwell.com/community/default.aspx?f=30&m=4339182

In particular there is a risk of overstressing your immune system such that you get secondary viral and fungal infections. This isn't specific to dapsone, I've had it happen with other treatment protocols too.

I mostly took atovaquone for the secondary infections, as this drug has an anti-fungal and anti-viral effect (at least against coronaviruses). If you can't get atovaquone (it's a bit pricey) an alternative would be fluconazole (anti-fungal) and nitazoxanide (anti-viral). Be aware that fluconazole has an inhibitory effect on adrenals, and this was a problem for me as it messed with my sodium/potassium.

I've generally had trouble with anti-folates (not specifically dapsone) causing nervousness and fatigue, and blood tests showed that my folate was low despite taking folic acid supplements.

https://www.healingwell.com/community/default.aspx?f=30&m=4338913

Dr H protocol includes rifampin, minocycline, and azithromycin. I didn't take rifampin because of its CYP3A4 effect, but I did take the other two.

I'm not sure if this would happen with dapsone, but a problem that I had with nucleotide analogues (which like dapsone inhibit the DNA polymerase) was that without azithromycin and minocycline, this did not sufficiently inhibit the motility of the spirochetes. The spirochetes moved around, triggering an excessive inflammatory response and autoimmune disorder (TTP).

If you get a burning smell (I think it smells a bit like burnt plastic) this is an indication of too much superoxide production. This occurs when neutrophils encounter live bacteria with an active metabolism. Taking minocycline and azithromycin seems to control this by slowing bacterial metabolism.

Methylene blue is usually used against bartonella. I took out bartonella using a different protocol before I tried to eliminate borrelia. Some people disagree with this approach, but I found it easier to treat bartonella than borrelia, so I did that first.

https://www.healingwell.com/community/default.aspx?f=30&m=4234762

Here's my experience with double dapsone back in 2021. Horowitx has since updated his protocols based on his clinical experience. Here's his latest paper.

https://www.mdpi.com/2076-2607/11/9/2301

I would say his latest paper is mandatory reading for anyone that wants to try his protocol. The recent LymeSummit talks has made me excited for this protocol again. There were many testimonials and Dr. H, while having a bit of a flair for the dramatics, seems to think it will legit help most people. If you read his paper you will see that the paper follows patients that have been sick for a long time. The mean length of illness was 14.7 years. Unfortunately, his office isn't taking new patients, but they did provide me a practitioner list of clinicians who had apparently been trained by Horowitz.

Reading his latest paper made me realize that the first time I tried double dapsone I should have been taking it much much easier. I still was trying to do too much and crap hit the fan. I ended up in the ER. If I did his newest protocol I would prepare for being out of commission for pretty much the length of the protocol.

I think trying the protocol by yourself is super duper dangerous. I can't tell by your post if you are trying to DIY this. Please read his newest paper and read about all the risks. You'll have to get blood work done often. I would not do this without being under supervision of a good doctor.

The good news about the protocol is it is "only" 9 weeks long. Then down the line once your body has recovered and labs normalized there are 2 weeks pulses if you are still having symptoms. That is really short for a Lyme/Co protocol. The protocol itself looks impossible. So many supplements and drugs. Yikes.

Other good news is despite how aggressive the protocol is out of 25 patients only 3 dropped out unable to finish. Here's what the paper says:

"Three patients were also unable to complete the protocol as prescribed. Two patients (8%) did not complete a full 28-day course of DDDCT prior to completing a HDDCT pulse. One was due to a severe Herxheimer flare with neuropsychiatric symptoms secondary to DSF use with DDS, and another was due to viral gastroenteritis. Another patient was unable to complete the 6-day HDDCT pulse as prescribed with 300 mg of MB due to his history of severe neuropsychiatric symptoms with psychosis, requiring a continuation of his psychiatric medicine."

Overall, I think the news on this protocol is really exciting.

Dear Lymie and Quinn,
thanks for your very helpful answers.
Lymie: I have contacted Dr H both his clinic and personal email but no answer. I can understand direct communication with him is difficult, so i m grateful that you as someone who went through it is sharing, it is very valuable.
I have studied the paper and it is indeed very thourough, but still I was able to find concrete dosages of abx. I m not going to enter 8 weeks double dose or high dose without a LLMD, thats for sure. Also I believe that all necessary supplements such as M.Blue must be used in the way Dr H prescribes, which is also not easy, for example here its hard to get pure MB.
Still I believe a confrete combinations of abx including dosages with dapson seems essential to know clearly, i assume there is no need to experiment - perhaps it is explicit in the protocol but I was able to get it.
I have been sick with lyme-bart-chlam two years now and at the moment have mainly neurological symptoms and I cant figure out, which is more active or dominating infection from among them, but I hope that DD / HDDST is complex enough to bring remission - at I hope to try.
Not only me but other friends with whom I m touch are struggling for 5-6 years taking continuous abx combo and still struggling.
But again some say, the double dose or high dose protocol is hard to take and perhaps its only due to Dr H refinemenet of all the side effects with secondary supplements, that it does work and people can actually stand it. What I appreciate with Dr H is that he is open, and sharing his insight and knowledge with the world through his papers etc. I have followed his talks on recent Lyme summit too.
To conclude, I dont know if I will be able to take it, and still now I m at pre-preliminary stage trying to see if I will be able to at least try to go into it more seriously and thoroughly under LLMD. So I d greatful for further ideas or suggestions or any references.

Quinn: Yes Im having some mouth thrush, after taking 2 x 150 mg flukonazole it seems to lessen so I m taking it as sign of some candide overgrowth. I will probably have to continue, because I was careless and mindless about it for many months, so it might have accumulated mainly inside the body - i dont feel others skin-related symptoms.
Yes, my experience is that indeed Ceph does better job to neuro symptoms that rifa, so apart from mino and azitro i m emphasising it more. I will see how it will go or not in terms of reducing symptoms and difficulties. Now also adding Dapsone 100mg so as to see if I m able to tolerate it at all - I hope I m not making things up because Dr MR suggests that Dapsone in this case or combo helps to treat persisters. I will not go above that dosage for the reasons I have said before.
Thank you both. Have a good time, and best wishes B

Marty Ross
I am currently following the ramp up protocol of Marty Ross. This is the second time I have tried starting with 25mg daily doses.

I am one of those who find dapsone very hard to take, even low doses.

https://www.treatlyme.net/guide/dapsone-lyme-persisters

"Dapsone is an antibiotic used to treat slow-growing persister bacteria. Because of this, it is regularly used to treat leprosy and a form of skin inflammation called dermatitis herpetiformis. It can also kill malaria and, therefore, it could help treat those with a Babesia coinfection. Finally, dapsone can lower inflammation in lupus, so it could control inflammation in Lyme."

Dapsone is worth working with.

Actually clears lyme in mice anyway, great research and article. The three dapsone based protocols are interesting.

https://www.lymedisease.org/combo-abx-embers/?fbclid=IwAR2nyVaEJdwwlfkqMAhUnCFZqLUZqtN_vA776Azqu0TNO_0B1uaheeURciM

Bhava,

I often felt short of breath when herxing. The cause is not necessarily methemoglobinemia. It can be due to microclotting, or bartonella attacking red blood cells, or sometimes just fatigue from the herx.

If you're really worried about methemoglobin, you could take nucleoside analogues instead. As with dapsone, this kills borrelia by blocking its DNA repair, but the side effects are a bit different, and it's less likely to cause methemoglobinemia. The downside of this approach is it's likely less effective on bartonella, and may be more likely to cause an excessive inflammatory response and microclotting, although there are ways to mitigate this.

Either way the herx is going to be bad. Be prepared for days when you can barely get out of bed. Some pain and fatigue is expected, but if you are getting microclotting, or anemia, or fungal infections, or hyponatremia, or a really bad smell, then you may need to lower the dose.

I found that taking loratadine seemed to increase borrelia die off. Some studies suggest that this doesn't really work, but it seemed to work for me. It's pretty strongly anti-inflammatory and seemed to interfere with my immune system clearing out the dead bacteria, so I would not take it every day, but only every 2 or 3 days. Maybe you could get away with taking a lower dose of dapsone with this, since the putative mechanism of desloratadine is to block borrelia's SOD and thus increase DNA damage, which dapsone prevents the bacteria from repairing.

I don't think rifampicin is essential. The mechanism of action is to block the ribosome, but this can be achieved with other antibiotics (eg azithromycin). There's nothing really special about rifampin, and plenty of alternatives.

Dr H is using MB in very high doses in his latest protocol as another anti-persister drug.

In his previous protocols it was used at much lower doses mainly to combat heamaglobin issues.

Dear Garzie and Quinn,

thanks for your answers.
Garzie, yes, to get pure MB here in EU, esp higher amount like say 10g powder or in liquid form that could cover whole Dr H 8 weeks protocol, including HDDCT, is difficult. I have contacted some docs and labs and will see what I will manage. Looks like it is one of the most essential components and among hardest to get.

Quinn, your points are interesting:
1. "Be careful stopping all the antibiotics at once, especially if you are taking the "strong" stuff. The reason is, this can leave some injured but not-quite-dead bacteria..." Yes, this is interesting point but it seems to me to contradicat a little bit the idea of pulsing, as suggested by Dr J, or what we have previously discussed in other treads. I guess, there is an attitude of ongoing intake of abx, like some of my friends are doing (taking abx continuously for even 5 years) or taking pulse approach (eg interrupting, pulsing) with idea of both restoring IS and letting bacteria to activate, shift from L-forms/cysts/metabolically inactive state (whatever term we use) to more active, yet more vulnerable spirochete form, which makes them more vulnerable to abx. I dont know if it is again experiential, eg one tries both and sees what works better. It is possible it can differ from individual to individual. Also stopping abx, i guess, what is happening after some days, or ten days, how symptoms change, get worse, in which way, or get better - i believe these also can be certain signs or indications.

2. The lab told me, even there is low PDW in CBC, there is no microclotting - they did the miscroscopy. I hope low plateles/trombocyts are side effect of Dapsone or other abx, and not any long term systemic defficiency or sign of otther issue. I hope I will see when suspending abx and taking food and suppl. to support it - then hopefully after some time when checking CBC will increase.

Here, perhaps, an important point is the right interpretation of CBC, liver, kidney rates - some rates can increase or decrese as natural side effect of medication and is not a big deal - it will get fixed by itself naturally - while other indications can mean certain disfunctions of organs, or more serious issues, so I think to read and interpret properly is very important. In my case, I have continuosly slightly lowered Hemoglobin (now 132 - however in May it was 128 so slight increase) and Hematokrit (0,37 same as in May). I thought it is due to Bart, so i emphasised more Rifa, but I m not sure now, perhaps its part of my condition, or the rate can be influenced by Dapsone too, I m not sure.

In any case thanks for reading and your views and suggestions. I m grateful that we are in contact and communicating, there are many things to learn and to discover and hopefully it will help to navigate the process of healing. Best wishes, good luck to all, B

Hi Bhava,

The idea of pulsing is based on research that shows borrelia reacts to antibiotics with some compensatory mechanisms to tolerate the antibiotics. See eg:

Persister mechanisms in Borrelia burgdorferi: implications for improved intervention
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4576169/

Borrelia burgdorferi, the Lyme disease spirochete, possesses genetically-encoded responses to doxycycline, but not to amoxicillin
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc9524633/

Dr J usually recommends taking antibiotics every other day (ie Monday/Wednesday/Friday). The idea is to let the bacteria recover a little bit, such that it stops some of the antibiotic tolerance mechanisms.

I've done this, and it seems fine. I also find that taking a day off lets my immune system recover, and reduces the diarrhea somewhat.

This research was done mainly with doxycycline and amoxicillin, and some similar antibiotics. What is debatable is whether this would be useful with other antibiotics that have a different mechanism of action (such as dapsone) and whether it is helpful to take longer breaks of a week or more.

My personal experience is that this pulsing schedule doesn't work well with certain meds. I also encountered a peculiar problem, particularly with nucleotide analogues, where I would get a distinct burning smell which I suspect is a byproduct of superoxide or nitric oxide production. The immune system produces these molecules to kill bacteria, so this implies that some of the bacteria weren't dead. This is bad, as these reactive molecules are rather damaging and unhealthy, so when I smell this, I want to change my antibiotic protocol.

Regarding dapsone specifically, Dr H recommends taking it for several days in a row, and not every other day.

I would agree that the low hemoglobin is probably bartonella. I don't know if rifampicin would be useful. I got a bartonella infection that seemed to be resistant to rifampicin, so I used other antibiotics.

https://www.healingwell.com/community/default.aspx?f=30&m=4345421&g=4345620#m4345620

I didn't try to treat both borrelia and bartonella at the same time because I thought the herx would be too much. Dr H seems to disagree, and recommends increasing the dapsone and MB to kill bartonella.

Regarding microclotting and TTP, this seems to be mainly due to bacteria or viruses causing inflammation in the endothelium. When I took more antibiotics, which prevented borrelia from moving around and getting into the endothelium, then the clots stopped happening. Microclotting can also be caused by covid-19, but I found that to be treatable with atovaquone or nitazoxanide.

Dear Rainy Cloud and Quinn,
thank you very much for your answers.

Rainy Cloud - great research! Considering the dosages suggested by Dr H I m thinking of buying larger amount. All the links you have kindly sent offer pure, pharmaceutical MB, so its great there are many good options. In general for taking, it seems easier to use liquid and with pipet take number of drops.. it is easier than powder, no?

Quinn - again interesting points. My problem with pulsing abx is that actually quite early, say after 3-4 days I m already starting to feel some kind of relapse of symptoms, eg. weird feelings in my brain (as if pulling hair), lymph nodes pain / swelling, weird neuropathy, and a bunch of lyme-bart symptoms waking up. It makes me nervous to continue off-period for longer time.

It is perhaps only my guesswork, but it seems that in my case bacteria is recovering after this period of 3 days. I think it is possible to somehow check if it is truth or not by resuming abx and seeing the extent of herx or no-herx, which also is a sign of something. I thought of being off-abx to make baseline tests for liver, kidneys, CBC not to have increased rates which happened to me last time, while on Abx, and which gave me stress (lab said: possible early stage of cirrhosis)

Thanks for information about continuing dapsone for many days in row. I will do it. Not sure if I will be able to take the full 8 weeks protocol. With all supplements and antidotes I hope it will be more bearable.

You have mentioned that: "My personal experience is that this pulsing schedule doesn't work well with certain meds." Which meds?

Best wishes, good luck, B

Dear Quinn,
thanks for your answer. It seems I m having bart relapses too. In spite of both serology and PCR tests for bart being negative, I have suspended abx for only three days, I m having quick returns of symptoms, and resuming abx (this time starting only with mino-azi), a hellish herx appeared. I consider borrelia would not be able to come back so quickly after quite sever abx medication for some weeks (mino-azi-rifa-dapsone).
I have observed dark urine only while taking rifa on empty stomach, otherwise urines color is normal so i cant take as as something mirror for checking symptoms. But there are other sings and symptoms that show more concretely what is taking place both in the phase of taking abx and off-abx.
From abx that stay longer, I guess plaquenill has very long half life, and it seems Dr H is using in in the beginning of his Daps 8 weeks protocol. I will take it too. From other abx perhaps only azi has longer half life, dapsone etc, but my point is that I dont understnad why after 3 days off symptoms are comping back and with resuming abx there is a strong herx. It indicates lyme/bart/chlam was not eradicated, only surpressed, so I need to apply more thoroughly the daps prot. Unfortunately there is no LLMD to guide me so somehow being on DIY is the only possibility, so I m aware I have to super aware and cautious, especially when perhaps going to double-dosing or higher dosing.
Also the fact that sever herx occurs only with mino-azi combo shows something, it says or indicates something... I m often times surprised with dynamics of what is going on, and have to adapt my ideas and interpretations of healing process - what I previously thought is going on I have to let go of that assumption... bit like Alice in Wonderland...

Hello Quin,

I also got neg. both PCR and serology for bart, yet still not sure if I still get it or not. I hope now Daps will take care of that too. I think I need to keep taking it for longer time as you said, as Dr H suggests, not pulsing and going off after 2-3 weeks.

Yes, bart can stay dormant for some time and re-emerge after maybe months, which can be tricky and perhaps not easy to completely eradicate it. Are you suggesting Plaq is waking up dormant bart?

I took Plaq about 1 month ago, only for few days. Its possible it has stayed in the system due to its long half life. I have noticed Dr. H suggests to take Plaq also in the begining of his 8 weeks Daps protocol.
Best wishes, B

Dear Quinn, thanks for your answer. It is great that you have managed to completely eliminate it within a year with mino and azi. I m a bit unclear about which infection is active, now including candida, hopefully things will get more clear over the time.
Thanks also for previously posting recent studies showing specfici defence mechansims of bacterium against doxy and amoxi. I hope we all will get gradually better and finally get into remission and complete recovery.