Horowitz article

https://www.lymedisease.org/horowitz-dapsone-chronic-lyme/

MSIDS Research Foundation Study Finds That Leprosy Drugs Provide Potential Cure for Chronic Lyme Disease, Promising Hope for Millions of Chronic Lyme Disease Patients
Updated Yesterday

NEW HAVEN, Conn.--(BUSINESS WIRE)--Oct 28, 2020--

A groundbreaking in vivo clinical study conducted by Dr. Richard Horowitz, serving on the U.S. Department of Health and Human Services Babesia and Tick-borne Pathogens subcommittee, has found that an eight-week course of the proven leprosy drug dapsone combined with doxycycline and rifampin is effective in improving symptoms in 98% of patients suffering from chronic Lyme disease/Post Treatment Lyme Disease Syndrome (PTLDS). Dapsone not only acts as a ‘persister’ drug, but also lowers inflammation, has anti-malarial effects, and can be effective in an autoimmune illness. These are all clinical manifestations that can be seen in chronic Lyme disease with associated co-infections like Babesia (a malarial-like parasite) and Bartonella (an intracellular bacterium). After using this novel oral, generic antibiotic protocol, 58 percent of those with a history of PTLDS remained in remission for one year or longer, providing new hope for those suffering from chronic Lyme disease. Until now, no treatment has been available for PTLDS. The study is published today in the peer-reviewed journal Antibiotics.

Lyme borreliosis is a worldwide epidemic, which can result in disabling chronic fatigue, musculoskeletal pain, and neuropsychiatric complaints. Between 300,000 and 500,000 new Lyme disease cases are diagnosed in the U.S. every year, with an estimated 2 million individuals suffering from PTLDS. Prior National Institute of Health (NIH) trials have shown that symptoms of chronic Lyme disease can be as severe as chronic congestive heart failure, leading to long-term suffering and disability, elevated healthcare costs, and financial insecurity. Insurance companies have usually denied the persistence of Lyme bacteria after standard antibiotic therapies. This frequently leads to a denial of long-term treatment and lack of access to care for chronically ill patients, who are left without answers as to the etiology of their long-term illness.

During the past decade, new research from Stanford University, Johns Hopkins University, and the University of New Haven have shown the presence of novel biofilm forms and ‘persister’ forms of Borrelia in culture, which potentially explains treatment resistance and relapse. A recent study published in the Springer journal BMC Research Notes, conducted by University of New Haven researchers and Dr. Richard Horowitz, showed how the bacteria that causes Lyme disease, Borrelia burgdorferi, forms biofilms that protect the organism, and that dapsone combination therapy was one of the most effective treatments against the biofilm form of the bacteria. This study helps identify dapsone’s novel mechanism, which explains in part its effectiveness in relieving resistant symptoms in chronic Lyme disease. The follow-up clinical study demonstrated that combining antibiotics including a tetracycline with older leprosy drugs, e.g., rifampin and dapsone, led to a 98% improvement and 45% long term remission rate in all patients. Both studies were funded by the MSIDS Research Foundation (MRF) which supports research for causes, treatments, and possible cures of tick-borne and other vector-borne illnesses, as well as the causes, treatments, and possible cures of other acute and chronic diseases.

“ The next step is to perform a randomized, placebo-controlled trial using double dose dapsone combination therapy (DDS CT), done in parallel with studies to find answers for resistant tickborne co-infections,” said Dr. Richard Horowitz. “The goal is to decisively prove that the elusive “cure” for Lyme disease that has evaded researchers and clinicians for decades may now finally be within reach, curing the suffering of millions of patients worldwide.”

Dr. Richard Horowitz

Dr. Richard Horowitz is a board-certified internist and medical director of the Hudson Valley Healing Arts Center, specializing in the treatment of tick-borne disorders. He has treated over 13,000 Chronic Lyme disease patients in the past 30 years and was a member of the U.S. Department of Health and Human Services (HHS) Tick-borne Disease Working Group and co-chair of the HHS Other Tick-borne Diseases and Co-infections subcommittee that provided Congress with recommendations on tick-borne illness. He is presently serving on the HHS Babesia and Tick-borne Pathogens subcommittee. His latest book “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease” explains his comprehensive approach to treating resistant chronic illness.

a good study and provides some of the clearest evidence yet of the extreme resilience of this organism to antibiotics - and the need for multiple antibiotic regimes in chronic Lyme.

the experiments were only over 72hrs - so i would hope that in humans the longer but lower doses would still be effective - but just goes to show what tough little buggers the borrelia are.

an interesting side note at the end of the document - that they only tested the BB lab strain B31 - said that tests really need to be repeated on other wild strains to confirm efficacy.

i recall Horowitz writing that he was also doing a double strength 200mg / day dapsone trial - again with tetracyclines and rifampicin - but i have not seen or heard more on that since - over a year ago i think.
i think he said he wanted to try it alongside disulfiram as a 3-way experiment
any one know more on that ??

Is anybody else thinking about doing this? Here's the paper that was released:

https://www.mdpi.com/2079-6382/9/11/725

The overall protocol he uses is a lot bigger than just dapson, rifampin, doxy. Very intensive. Lots of labs throughout. For example, on month 2 when you are taking double dapsone Horowitz recommends labs once a week.

I'm going to email my Dr and see what he thinks, and if we can try this. YOLO

Thanks Lymie for posting this protocol. I read the paper.
I too am very interested in this protocol, I'm currently taking much of this protocol, adding in dapsone would be pretty easy.
I do have a concern with Horowitz protocols in general though, he really pours on the meds, I've seen some crazy high med dosages in his protocols such as many grams of amox daily, many grams of IV meds, and for long periods of time.
What happened to his support of DSF?

I find it really interesting that he is incorporating both oil of oregano and methylene blue in the protocol. And nystatin, another antifungal?
There are so many active ingredients in this that it is impossible to separate out the primary mode of action.
Like DSF, I will watch for further results, it's tempting to poke with the dapsone though. At least we won't have to wait long as this is only a two month protocol. I'm watching the DSF forums and shaking my head a bit over the high levels of failures and the inability of people to say enough.

Just a reflection, those treatments that have most helped me, I knew they were effective within a few days of use.

“ I've seen some crazy high med dosages in his protocols such as many grams of amox daily, “

Like how many grams ?

I took Amoxy with my first LL doc - dosage was 3000 daily - 1000 mg 3x daily.
Half life is short - like an hour.

Lymie24 said...
Is anybody else thinking about doing this? Here's the paper that was released:

https://www.mdpi.com/2079-6382/9/11/725

The overall protocol he uses is a lot bigger than just dapson, rifampin, doxy. Very intensive. Lots of labs throughout. For example, on month 2 when you are taking double dapsone Horowitz recommends labs once a week.

I'm going to email my Dr and see what he thinks and if we can try this. YOLO

thanks for posting the double dose dapsone study - I will have a read and see if I have anything to add to the discussion.

I read the paper
not a great deal to add or comment other than I have a lot of time for Horowitz

my feeling is he is a genuine person of good character who is doing his absolute best to treat people successfully - even after they have failed other treatments or LLMDs several times.

as far as I can gather - his wife has been ill with Lyme disease for 20+ years and he has been striving all this time to find a cure for her - my guess is this was his primary motivation - along with helping many thousands of others.

Reading the case studies in this document its clear that there would be little point in giving most of these patients simple protocols with one or two antibiotic combinations in them - as they have already failed such treatments - often several times. I think this is where some of the very high doses and combination protocols are coming from

the study again underlines just how tough a condition this to treat, so if he wants to get them to remission he has to throw every tool he has at the problem - hence the large protocols.
i think you can see this in his MSIDS model where he doesn't really rule anything out - but instead grasps every possible chance to reduce inflammation and aid recovery.

he is also an early adopter of many new ideas and therapeutic agents - not waiting for proof absolute that they are effective - if on balance the risk of permanent harm is low. Again i think this is driven by his wish to help people today - not in 10 or 20 years when we have more answers.

you can see this in the rationale for Double Dose dapsone protocol - an option that involves 2 months of intensive treatment - rather than years of ABX often only to relapse afterward.

i think we all wish it was simpler to treat chronic Lyme disease - and maybe one-day such options will exist.

I personally would value some more treatments that work to restore normal immune function as my gut tells me this is where truly effective and non-toxic treatments may lie - but in the meantime, I can't really blame the guy for using what he has available to him and what he has found works best for the 1000's of people he has treated.

wish there were more like him.

I remember seeing that his wife is one of the patients who are in remission after Double-Dapsone Combination Therapy.

If it works, that is great news, and any hope is good.

The problem with the treatment mentioned, at least for people such as myself and some others who have posted on here, is the intensity of it. I know I've personally struggled with different combinations. Even a simple plan of Bicillin mixed with zithromax has given me major issues before I could add in a second med for Bartonella.

For those who can handle it, it could be a blessing waiting to happen.

Adam B said...
Yeah, it's a lot. I might try it at some point, as I usually handle meds pretty well.

I imagine that anyone on this protocol has already tried (and failed) many other treatments.

yep - i think the remission rate needs to be taken in the context of the patient group it's usually used on having failed just about everything else - incl long-term multiple antibiotics protocols.

it may well be higher in a cohort of "typical" Lyme disease patients.

i hadn't noticed this before but the numbers of positive test results for bartonella in that patient group are striking

i suspect the many different positive bart tests referenced in that patient group 33 positive test results in total ( antibodies to B. Henselae, FISH, PCR etc ) - in a patient group of 40 are not 1:1 with patients

however taking even the numbers of positive simple antibody test for bart on its own - 45% of this group were antibody positive for Bart

given what we know about the v poor sensitivity of this standard serologic test for bart - - perhaps 20-30% at best - i would take it to mean that Bart is highly prevalent in this group - with the vast majority if not all being very likely infected to get 45% testing positive via serology. ( Ed Breischwerdts and his team document how the at least 50% of chronic bart patients will typically test negative on antibodies )

the fact that a good portion of these patients reached remission - including a good portion of those that tested positive for bart gives us some indication that despite the general perception that dapsone does not work for bart - based on those results it certainly seems to.

perhaps the later extra high dose pulse dapsone is working on bart even better - hence working for the most recalcitrant cases ....

i think there is something there that give cause for hope