New Horowitz / Fallon study - Sept 2023 - High Dose Pulsed Dapsone

Thank you for posting this Garzie!

in his second book Horowitz is quite positive about PZA for bart - i think he gives case studies where it helped

and i think from laboratory trials we know its active for bartonella -

so he is really just reporting that in this cohort - he couldn't detect a statistically significant difference between those, who have bartonella, taking it along side everything else - and those not taking it - as there are only such small numbers in that group in the trail.

i notice that some of the most co-infected and poorest to respond cases did respond after courses of HDDCT that included it - so you could infer there is some sort of a signal there

i don't know much about the drug apart from that - in my head from things i have picked up casually while reading other matter i have it filed under "older drugs that tend to be harsh or more toxic" - but have not looked into it in any detail

one of the other interesting things in the paper is just how many co-morbidities this patient cohort has
vitamin deficiencies, heavy metals, mold? autoimmunity etc etc

i wonder how much of this is caused because their bodies are simply overwhelmed with lyme an co toxins and inflammation - and that uses up all their detoxification capacity - leading them to deplete vitamins and accumulate other toxins as they no longer have sufficient resources left to process them

i keep re-reading bits of this study as there is so much info in there.

one of the interesting and encouraging things in there is that in his study of 25 patients who had been ill for a long long time - older age was not associated with poorer chance of reaching remission.

this is good news for those of us that are in middle age or beyond - where we might otherwise think our chances of reaching remission are lower than younger people.

Hi Bhava

Dapsone has not been shown to be effective by Horowitz as a single agent - only when used in combination with other common lyme and bartonella antibiotics ( typically 3-4 others).

Dapsone is an older anti-persister cell drug used for other well known bacterial infections that are known to form persister cells ( bacterial cells that stop metabolising and enter a low energy state where they are not killed by conventional antibiotics) - in this case leprosy

typically the exact mechanism action of these drugs in lyme disease or bartonella has not been researched in great detail - due to the huge costs involved in doing so.

instead is what we have in papers like this from people like Horowitz - who extrapolate from in-vitro trials against lyme and co-infections - and prior use in other persister cell infections - which convince them to try these already FDA approved drugs off label for lyme and co-infections.
because of this there are typically not direct equivalents - as, for all we know, Dapsone could be acting in a unique way in lyme or bart.
the difficulty of treating lyme and bartonella with conventional antibiotics has driven LLMD's to experiment with several such persister drugs in this way.

Horowitz finds dapsone interesting because he has been able to demonstrate that lyme disease responds to dapsone in a dose dependent manner - something it does not do very much with other antibiotics - and that suggests the possibility of shorter treatment times. this is important because typical successful lyme treatments with conventional antibiotics are 2-3 years for the sicker patients - with corresponding high costs - and great discomfort from herx effects.
however, dapsone is also toxic to humans in a dose dependent manner leading to problems with the treatment such as Methemoglobinemia.

so, the therapy described in this paper has significant risks and adverse effects and is only used for the sickest of patients who have also failed all other antibiotic treatments over many years ( his wife was ill for over 30 years with Lyme) these prior treatments include several years of conventional antibiotics, single dose dapsone combination antibiotic treatments and double dose dapsone combination antibiotic therapies. These last 2 inform the LLMD of the patients suitability and tolerance for dapsone based therapies.

so this is not an advisable treatment for anyone to start without first doing those treatments first
( he has published papers on those prior treatments also - and includes details in his book - "How can I get better" - his best book in my opinion as it gives a practical framework to address all of the co-morbidities associated with Lyme which are important to help a person recover)
so Horowitz is highlighting it as a treatment of last resort for the very toughest cases
as there are significant adverse effects and risks involved for this high dose regimen

Dapsone is available worldwide as a generic - mostly in developing contrives where leprosy is more common.

in the paper he goes to some lengths to describe the entire protocol - presumably so other MD's can follow it - this includes all of the antibiotics used - the ramp up schedule - all of the supporting medications and supplements used, the ongoing safety testing that needs to be done to keep the patient safe while on the treatment etc etc

however, this is a very extensive and potentially dangerous treatment to undertake - and i would not recommend anyone undertake it without the ongoing monitoring of an MD.

i see it as more an extreme case study that demonstrates the general principles that apply to even the most severe and hard to treat cases - which allow us to better understand the disease and how to tackle it.

Girlie you're back! *hops up and down waving*

I wonder about the severity of the herx with this. The paper doesn't really address that.

I am working towards trying this protocol very soon, next week if I can get necessary prescriptions filled by then, though I would not put myself in the category of someone who has tried everything for years and failed. The reason I want to try is because I really don’t want to be on antibiotics for years and years and if there is any chance of living through only a few months of hell to achieve remission it seems so worth it, if I can get through it. The side effects Horowitz discusses seem to be temporary while on or recovering from the protocol and he does not include discussion of any potential permanent damage. I hope that is the really the case. I have been diagnosed only since January this year when I had a major flare and most likely a case of reinfection (though have had symptoms for over a decade) and actively treating since then, so less than a year. I made about 50% progress after a few months and then completely stalled. Problems related to inflammation are increasing (most recent being development of cataracts related to uveitis) and that is really scaring me. I am nervous about this being the right decision and my doctor is also trepidatious, but has been taking her time to read the paper and prepare and had contact with Dr. Horowitz. I am not yet sure of the details of their discussion, but apparently he was encouraging and did not dissuade her despite me not being among the worst of cases. I have been on all the supplements for a little over a week to make sure I tolerate them and have started an elemental diet (something I have used successfully in the past to recover from IBS) to try to avoid growth of bad actors in my microbiome. My doctor is preparing the prescriptions to get in to the pharmacy next week. I am guessing they may not have everything and it might be a while to sort that out. My plan is to do the protocol through the double dapsone portion and then evaluate where things stand, hopefully not needing the quadruple dapsone. I hope I am not being too crazy embarking on this, latching on to Dr. Horowitz’s optimism about his treatment being a game changer, but it is just too tempting to think I can live through 8 weeks of anything if I can get my life back.

Thanks so much for the supportive response Garzie! I will definitely provide updates and let everyone know how it goes. Yes, the plan is to follow all the recommendations for testing exactly. I already had the EKG and initial blood tests. The EKG was borderline in terms of lowish voltage but QT interval was ok (though on the long end of normal unfortunately), and my doctor seemed ok with it. She is very cautious and taking her time, including researching all drug interactions, so that gives me more confidence in going through with this. Unfortunately my husband just tested positive for covid a few hours ago with minor symptoms and I will probably wait until he is negative before going forward just to be extra careful. So far I have avoided it. Fingers crossed!

Thank you Girlie! It is always good to hear encouragement to be wise and listen to body because I am one to push through and ignore too much. I have al lot of good intentions at the start of this. We’ll see if I can keep them in place

I finally got my Igenex FISH test results and am trying not to be too discouraged. I am positive for babesia and negative for Bartonella. Unfortunately, none of the Horowitz subjects in his paper who had FISH positive babesia experienced 100% remission. But it was a fairly small cohort and someone has to be first, right? My doctor is finally sending in the prescriptions today and I will be starting as soon as I get my hands on them. I sure hope this is the right decision.

I will be taking everything listed in the protocol tables in the paper, which is a lot. But I am thinking about adding some babesia herbs too. I was FISH negative for bart but did have a minor antibody reaction a few months ago with the Vibrant Wellness test, same for babesia antibodies at that time actually, so I suppose it isn’t conclusive I don’t have active bart. But for now I will pretend I don’t.

Thanks for your insights Garzie. Yes, looking more carefully at the patient chart there are a few Babs positive other than FISH who did well, and it really is such a small sample size for drawing any definitive conclusions, though a good number to have made it through the protocol without any major negative consequences and that is encouraging. It will be an interesting experiment. Stay tuned!