Dr H Dapsone protocol

Dear friends,

I have been again studying Dr. H double dose and high dose dapsone protocol for 8 weeks, as stated here https://www.mdpi.com/2076-2607/11/9/2301

and I have developed some doubts due to its overwhelming complexity.

- In fact it contains 8-9 antibiotics: plaquenill, rifampicin/rifabutin, nystatin, mino/doxy, azitro/clarithro, MB, dapsone, pyrazinamide, clotrimazole (if yeast is not fixed with nystatin only)
- high doses of stuff hard to get in EU - Leucovorin, L-methyl folate 60mg per day, MB up to 300mg per day
- from week 5 on - weekly check ups for CBC, CMP, MetHb, Haptoglobin
- many other supplements and supportive agents
- for bart, he says, repeated high dose-dapsone pulses are needed
- without someone trained by him can be hard to succeed, not recommended to do while on self-therapy, or perhaps even LLMD not qualified and trained by him

Thanks for any feedbacks or advices. Still considering going for it or not..

Best regards, B

Dear Garzie,

thanks for your answer. In his study, he says high dose dapsone covers bartonella too. But on his FB he mentiones the high dose pulses need to be repeated to treat bart. On his FB he also says he published everything so he suggests this protocol is for people who are not under his guidance. But also it seems you are right that there are high risks. From my experience, I have managed to reach 100mg Dapsone with only 1,7mg Methyl folate and had some hardships with breathing, apart from other difficulties. But the truth is the protocol is quite thorough and starts from low dose, gradually building it up, which I did not do.

In any case what you have mentioned in the other tread with Dr J using low dapsone pulses, or eventually Dr MR 's suggestion here https://www.treatlyme.net/guide/dapsone-lyme-persisters are perhaps options too.

Best wishes, B

The complexity of this protocol is for several reasons.

First, you need to supplement folate or you will have problems.

Second, you need to keep the inflammatory response under control or you are risking autoimmune disease. You especially need to keep the borrelia immobile so it doesn't get into the endothelium or you are risking blood clots.

There's also the G6PD issue.

I wouldn't recommend this for bartonella as there are other ways to eliminate bart, which I was successful with.

Dear friends

thanks for your answers. Yes, taking only 50 mg of Dapsone per day, and from its side effects antidotes 3,5 mg L-methyl folate and around 30 mg of MB daily, still my Hemoglobin went down to 116, according to CBC I got today.

G6PD does not seem to be a problem, I would get blueish already if I would have G6PD deficiency.

Quin, how to check and be clear about whether there is blood clots or not? And to keep borrelia immobile, I also dont know - I thought more bactericidal abx like cefuroxime, rifampicin or even daps can do that, but again it is only my guess.

By the way, from randon borrelia burgdorf. Elisa testing I got IgG 4,35.. and IgM 5,32.. so looks like pretty active, in spite all the abx combination I have been taking, I find it quite strange...

Best wishes, B

Hi, I think such tests in my country are not available. Yes, it is my experience too, that switching antibiotics is sometimes quite effective - i have noticed it too - eg. recently I took again Cefuroxime axetil with other abx and had quite severe herx.
Let me ask about plaquenill - it has an extremely long half life, so if say I m taking it for 5 days 200mg twice a day, corresponding amount will remain in the body and will influence other abx combination? From Dr.H protocol it is not clear to me whether it is to be taken continuously all along.
Taken into account the above mentioned, does it have sense to take for longer time, like weeks etc?

Thank you, best wishes
B

just to correct myself - i re-read one of his Dapsone papers and he did report people who tested positive for bartonella reaching remission on his pulsed high dose protocol.

they did often take many cycles - and those cycles included up to 600mg of Methylene Blue a day - which he now describes as a persister drug - vs just taken at low doses as a supportive therapy to help reduce haemoglobin damage in his previous papers.

we know MB is highly active for bartonella from previous studies by Zhang where it came out as pretty much top of the pile of all FDA approved drugs - as a single agent - so it could be the MB that is making the difference to Bart - or at least its combination with the other abx including Dapsone.

anyway - i didn't want to unfairly represent his approach as not working for people with bartonella

there is a video interview on the project Lyme youtube channel of a lady that tolerated it - she had only done one cycle but planned to do more

when they published that paper - or when it was still in pre- print i wrote to them highlighting the need for including information on the herx, side effects and tolerability of the treatment - since such impacts were conspicuously absent

unfortunately - no such changes were included in the final manuscript

i think the rules of conduct of medical doctors prevent them from disseminating complete "how to guides" - that people could follow DIY - especially for treatments that have significant risks attached - as that would be seen as irresponsible by medical boards.

however - there is nothing stopping them from reporting side effects or tolerability in a study paper - in fact i would argue, that when promoting a new treatment, they even have a responsibility to do so

Just wanted to share since blood clots were mentioned. I have Lyme, Bartonella and Babesia for 12 years now. I had pulmonary embolism 5 months ago. A few years ago I had red, swollen, hot to the touch and painful areas on my legs. Thought it was congested lymph system but it was actually blood clots that later went to my lungs. I’m 52 and don’t smoke, or take birth control pills and haven’t traveled. My Dr. is stumped why I’m getting blood clots. I do have a minor genetic predisposition. But I think it’s mainly caused by the infections I have and treatment.

Bhava123 said...
Dear friends,

thanks for your answers. Garzie, I saw on his FB him saying that for bart, repeated high dose dapsone cycles might be needed.

I d like to share my observation - taking plaquenil for some days and then taking Mino/Clarithro/Dapsone made such a strong herx, that I did not have previously for weeks taking Mino/Rifampicin/Dapsone without plaq. It seems to me that plaquenill indeed does boost effectivness of other abx, that s my current observation.

The problem with Dr H s protocol is its complexity, especially in the US stuff like higher doses of Methyl Folate, or even MB are much more easily available than in EU. I guess, not any LLMD is qualified to guide a patient with this specific protocol, probably must have been trained by Dr H.

Still I m finding it useful, even on low dose (50-100mg) of Dapsone. I also assume that herxing is a sign that it works, and once herxing is over, it is ok to be off-abx, - and applying it in a kind of pulsing manner. This intended adjustment is a necessity, since I m not able to have all abx, and all supplements (65 mg methylfolate, 300-600mg of MB) for high dose pulsing dapsone. Besides, it can be risky, while the low dose can take longer time, but I assume risks too are lesser.

Especially in my country there is only one LLMD who have tried it with 6 patients and he told me that he basically failed - only one person had improvement - most of the patience were not able to tolerate it and had to give it up after 3 weeks (without any solid, concrete improvements). In this regard I d interested, if there is any, say objective feedbacks from people who have tried this protocol - it might be possible most people were not able to tolerate it, or did not reach remission mentioned by dr H - but its hard to know the truth.

I have checked on FB, reddit, and it seems some did succeed, but many did not.


Best wishes, good luck, B

In Horowitz's latest paper, which is an observational study of 25, 22 patients were able to finish treatment. One dropped out due to severe herx. One dropped out due to gastroentrentis. One dropped out due to psychosis. In my notes I wrote that the patient had a history of psychosis. I think it might have been that the psychosis wasn't necessarily due to the protocol, but I'd have to go back and look to be sure. 22 out of 25 finishing the protocol isn't too bad considering how aggressive the protocol is. I noticed in his latest study Horowitz is much more detailed and strict in his instructions on performing labs and the use of what he calls nutraceuitcals (and the brands/products he wants used).

At the LymeSummit conference last month Horowitz had many patients come and give their testimonials. I do think Horowitz is the only Lyme doctor even attempting a, sort of, scientific approach to treatment. Observational studies aren't the greatest but at least he is putting his work and results out there. I do think Horowitz and his protocol are as close to an "answer" as we are going to get in the near future. Hopefully in the future better, more tolerated, and less aggressive treatments will come to light.

Post Edited (Lymie24) : 8/30/2024 1:19:15 PM (GMT-4)

His paper showed it worked in the short term for 30% of people. I dont think its the dapsone in general just putting someone on 5+ drugs at once.

that seems a pretty fair summary to me Lymie

i dont think its only the dapsone thats at work in his protocols - their previous studies do seem to support there is something unusual about the way it works on lyme - in that its one of the few drugs we have that seems to have a fairly linear dose dependent killing response - where most other drugs kill a proportion of the bacteria but leave most of the persister cells surviving.

the approach Dr H is using seems to be taking advantage of this property of Dapsone - while adding additional persister drugs to it to further increase effectiveness - including - rifampicin, pyrazinamide and methylene blue is also a persister drug in high concentrations / doses -

i have been reading some of the combination antibiotic trials by Zhang etc including some of the trials that included things like disulfiram, dapsone, nitroxoline and Nitazoxanide.

i am constantly surprised by just how resilient some of these organisms are
for instance in several of the trials - if they used stationary phase cultures ( synonymous with a high proportion of persister cells ) very few if any 3 or 4 drug combinations would completely kill all bacteria after 7 days - with the drugs at maximum biologically achievable concentrations for humans.

if we compare those concentrations to the real world concentrations achieved in a human patient while dosing with those same agents orally 2x a day - then we would see that most of the time the drug concentrations used in those in-vitro trials were not achieved - and that's in the patients free blood flow - its going to be still lower in tissues with low blood flow - like ligaments, tendons, cartilage - and lower again inside cells where drugs tend to penetrate less.

since we know effectiveness of these persister drugs is concentration dependent - this really does illustrate why its so hard to treat these infections with short courses of even multiple antibiotics.

Bhava123 said...
Dear friends,

one issue that I can see that one cant buy Leucovorin without prescription in the EU. L-methyl folate (15mg a pill and thus coming to 60mg daily) is a kind of possible, but I ve been wondering, whether it is still safe to go to even double dose of Dapsone (200mg daily) without Leucovorin. I dont know whether it is optional or essential.

Thanks, Best wishes, B

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

Scroll down to bottom of the paper until you find the "Supplementary Materials" section. Click that link and open the PDF document and read the text after the Methlyene Blue section. If you can't figure out how to open it I'll just paste the text here:

"I understand that I will need to have my labs checked every week (CBC, CMP, methemoglobin levels) as the Dapsone protocol medications may cause significant anemia and raise methemoglobin levels (resulting in potentially serious side effects including increased fatigue, headaches, and shortness of breath, rarely requiring IV medication in an emergency room setting). To minimize that effect, and reduce methemoglobin levels, I understand the need to avoid any other off label treatments during this time (including ozone and oxidative therapies) that have not been discussed with my provider, along with the need to take a minimum of certain antioxidants including: 1000 mg of liposomal glutathione twice a day (Essential Pro, 4 capsules, twice a day) along with high dose folic acid. This would include using high dose Leucovorin (25 mg, 2-4 tablets twice a day combined with 5 MTHF-ES, 4 pills twice a day, or Folafy-ER (Xymogen, 15 mg of L-methyl folate) as folic acid support. Other antioxidants used to help lower methemoglobin include Vitamin C (1-2 grams twice a day), Vitamin E (300 IUs twice a day), NADH (ENADA) 5 mg twice a day. In certain cases of elevated methemoglobin despite using methylene blue and the above antioxidants, cimetidine 400 mg twice a day may be added to your regimen. In that case, your provider will review potential medication interactions, and discuss lowering hydroxychloroquine (Plaquenil) to once a day.

Please verify that our office has received your lab results by sending a weekly email to our office (medical@hvhac.com) letting us know the day and time you went to the lab so that we can follow up with the results. If you have any questions before, during, or after the study, please contact our office at medical@hvhac.com

For emergencies, please call the office number, 845-229-8977, and you will be given instructions on how to reach the on-call medical provider. For any serious side effects, go to your local emergency room.

It is essential that while on Dapsone, you must be on several folic acid supplements to help decrease the possibility of severe anemia (i.e. Leucovorin 25mg twice a day and 5 MTHF-ES, 4 pills twice a day or Folafy ER, 2-4 pills twice a day). If you have a history of being sensitive to high doses of methylation support which may cause symptoms such as irritability and/or agitation, please inform your provider. In rare cases you could also experience nerve pain (neuropathy- although most patients in our study showed statistical improvement of neuropathy on Dapsone), and you should inform the office promptly if you have any unusual symptoms while on this protocol.

You must also use NAC 600 mg twice a day, alpha lipoic acid twice a day (i.e., ALAMAX 600 mg) along with liposomal glutathione (i.e., Essential Pro), 4 capsules (500 mg) twice a day to support detoxification pathways and help minimize the possibility of methemoglobinemia (NAC and alpha lipoic acid helps to increase glutathione levels, and glutathione has been shown to be helpful in reducing methemoglobinemia).

For biofilms, speak to your provider about which biofilm agents will be used during dapsone combination therapy. This may include Stevia 15 drops twice a day, along with cinnamon/clove/oregano oil capsules twice a day (Doctors Best) or oregano oil capsules 60 mg) twice a day; along with Biocidin, two sprays twice a day, and peppermint oil capsules twice a day. For cystic forms of borrelia, as well as Plaquenil (hydroxychloroquine) 200 mg twice a day, you may use grapefruit seed extract, two twice a day (Pure Encapsulations). Nystatin tablets, 500,000 Units two twice a day with a sugar free diet is also important to reduce the possibility of yeast overgrowth in the gastrointestinal tract.

At the end of the protocol, you will be stopping all medication used to treat your tick-borne disorders except for your folic acid (Leucovorin and 5 MTHF ES or Folafy-ER) and probiotics, as well as your biofilm agents. Please speak to your healthcare provider about using a one month mitochondrial regeneration protocol with any other specific instructions for your care once you are done with the dapsone protocol. Please have blood work repeated at the laboratory one week and then 3-4 weeks off the protocol. Stay on all other supplements and medications prescribed by your healthcare provider after you are done with the Dapsone, unless specifically indicated.
In signing this document, I understand the necessity of regular laboratory testing listed above, as well as strict compliance with all dietary and supplement regimens prescribed by my medical providers. I will avoid all alcohol and adhere to a strict yeast free, and sugar free diet as instructed by my provider. I also understand I can stop or adjust the protocol at any point in time if needed, by notifying Dr Horowitz and his medical staff at medical@hvhac.com.
Patient."


I'm not a doctor so I can't speak to whether Leucovorin is absolutely necessary with this protocol, but according to Horowitz it would seem so. You don't want to get severe anemia doing this protocol. I would reiterate that personally I wouldn't do this protocol unless I could do it as prescribed under a doctor's supervision.