Dapsone Abx protocol

no personal experience

dapsone is notoriously strong/difficult for people with lyme - not so much for people with leprosy it seems
be sure to get tested G6PD deficiency first as it is unsuitable for those with certain common mutations

biofilms technically only form on surfaces or in tissues - so non invasive diagnostic markers are unlikely to be useful
you can find fragments of fibrin or amyloid plaques in the blood via microscopy - but those are host substances

the reactions to treatment we in the lyme community report are actually something distinct from what medical science currently means by herxhiemer reactions.
technically the latter is a short reaction starting within a hour or so after antimicrobials are administered and lasting less than 24hrs and is thought to be driven directly by the release of bacterial membrane substances being released when the bacteria are killed by antibiotics.

whereas the "herx like reactions" to treatment suffered by chronic lyme sufferers can take days to occur after antimicrobials are administered and last a week or more - even after antimicrobials are stopped - which does not fit with the above explanation

although there is a lot of lyme folk law type explanations around what is happening with these longer herx reactions - but the exact cause is not actually well researched or understood and these are therefore merely hypotheses and quantitive diagnostics are lacking.

there are one of two papers pointing to ongoing cytokine release at very high levels from white blood cells that consume damaged but still living pathogenic bacteria - that take up to a week to either break the bacteria inside them down - or die and breakdown themselves. this is the most credible explanation for longer reactions i have come across , but i have not seen any commercially available tests that can evaluate it.

herx reactions seem to be different for each person - so i think in practice most people just come to recognise what is herx vs what is something else - just by repeated experience. eg - each time i take antimicrobials i get disrupted sleep, increased fatigue and pains in lower arms and legs.

i don't think there is a sharp division between herx like reactions and neuropathy - since herx can cause increased neuropathy

i hope its of some help

Dear Garzie and Quin, thanks for your answers and the other tread, I will reconsider it. In the past, I also had iron deficiency anemia, but it somehow improved after taking some combined Abx treatments, so perhaps it has been caused by Bart, I dont know. In any case, it can difficult and perhaps dangerous, especially since I m on self-treatment, not under an LLMD, for which reason I m considering to take more safe path.

Having said that, dapsone has 30 hours half life and hydroxychloroquine even 22 days, so these abx stay pretty long time in the body. I did not feel good with taking hydroxychloroquine, I was not able to tolerate it well. I took it in combination with mino (according to Sievers protocol).

Best wishes, B

Dear Girlie

thank you. What is the role and mechanism of dapsone in that protocol, and do you see it as an important agent that helped you to get into remission?

Also what Garzie is writing about Herxheimer reaction is quite interesting and it kind of changes my view or perception. In my experience, after a period off abx, when I start to take again, I tend to have most strong and concrete herx. Then gradually it fades away until the point of mixing herx with symptoms.

Good luck, best wishes, B

Bhava123 said...
Dear Girlie

thank you. What is the role and mechanism of dapsone in that protocol, and do you see it as an important agent that helped you to get into remission?

Also what Garzie is writing about Herxheimer reaction is quite interesting and it kind of changes my view or perception. In my experience, after a period off abx, when I start to take again, I tend to have most strong and concrete herx. Then gradually it fades away until the point of mixing herx with symptoms.

Good luck, best wishes, B

Yes I do think Dapsone was the difference between “remission” and lingering symptoms.
But it was brutal.

yes - the L' forms and "round body" forms or "Cysts" - and "cell wall deficient" forms are all types of cells associated with persister cell behaviour

we don't have a lot of good studies that show exactly which antibiotics or which combinations of antibiotic's act in which way against each type of organism

in general most of the antibiotics that have been developed over the last 60 years were designed to target fast growing planktonic forms of bacteria
slow growing persister cells and biofilms in human patients are a relatively recent discovery and hence the gap in effectiveness

for these reasons - we often have mainly LLMD's empirically derived protocols as guidance - and the limited scientific studies that have been done (which is often what the LLMD's protocols are trying to interpret and apply)

borrelia are well known to infect the CNS early in the course of infection - and late stage symptoms are often CNS related - but other infections - eg bartonella are known for CNS symptoms also

your selection of antibiotics are all known to be active for borrelia - and are similar to what we see LLMD's use - although its a little unusual to use two different tetracyclines together. since they are in the same family - their mechanism of action is the same - with only some minor pharma kinetic differences. normally drugs with different mechanisms of action are used in the hope that there will be more synergy.

the biofilm agents look quite comprehensive in number (dose is also important)
herbs like cryptolepis and oregano oil are quite potent - we don't have much information on exactly what specific effectiveness they have against planktonic vs persister cells vs biofilms - but herbs are generally thought to be quite broad in action so may be active against all three.

most antibiotic combinations for chronic lyme used by LLMD's ( and especially when co-infections such as bartonella are suspected) tend to use one or more drugs known to be active against persister cells - eg rifampicin or rifabutin, dapsone, pyrazinamide etc ( drugs often borrowed from treatments for other well known persister cell forming bacterial infections - such as tuberculosis and leprosy). these drugs tend to be bactericidal( kills bacteria - when in sufficient concentration) - rather than bacteriostatic ( slows rate of growth) like macrolides and tetracyclines.

please understand - i am not a medical doctor - i cannot know your exact circumstances, co-morbidities or risks, so this is not medical advice. anything offered here should be taken only as general information.

Dear friends, thank you for your answers,

Garzie, very helpful explanation. There is always something new to be learned. I m also grateful for any feedback on the medications and supplements I m taking, in order to optimalise the effectivity.

Thank you for your feedback on tetracyclines. I m taking both and trying to observe the response. I dont know why by with doxy 200mg seems to work more effectively to give a herx, while mino is said to have a better CNS and brain penetration. In the past, when I took higher dosages I had too high intra skull preassure. In the future I will try to stick with mino-only or doxy-only and see. (Btw, 100mg of mino corresponds to 200mg of doxy? I was not able to find it out)

Yes, I took rifampin with mino for some months, and then after taking Bart tests, i was told Bart is no longer active infection. So I stopped taking rifampin. I will evenutally consider to add it. For bactericidal action I m taking 400mg of Cefixime (1 dose in 24hrs) which I guess is ok as bactericid action. Also it is said that higher dosing of tetracyclines itself has some bactericid activity, so I guess this should be ok.

I have a question regarding dosage of timing of NAC. Is 1000mg two times per day enough, and is it one hour before taking Atb sufficient time distance? I was told NAC metablised together with Abx can reduce their efficiency. Also NAC has 6,2 hours half life so it is supposed to stay in the system long enough to give its effects.
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Dear Quinn, this is quite precious information and useful to know. So you are saying that extent of Herx can somehow be traced from CBC? Could you kindly share more informations on it?

Thank you once again and best wishes,
B

I decided that dapsone (and also disulfiram) was too risky for me. I did a different protocol which I recently summarized in this post:

https://www.healingwell.com/community/default.aspx?f=30&m=4338204&g=4338956#m4338956

Although I did not take dapsone, what I took was a similarly aggressive protocol. The herx was extremely bad, and would knock me out for weeks or months at a time. The detox caused severe stress on my liver, kidneys, and pancreas. I would often sleep for 12+ hours, and my immune system was overloaded and this put me at risk of secondary infections including viruses and mold.

Minocycline was effective on bartonella, but it took more than just that.

The herxes should diminish over time, but I found that initially the herx often increased with successful treatment because the die off broke up biofilm which exposed more bacteria. What Garzie describes with the herx diminishing after just the first few days or weeks can be a bad sign because it suggests an unsuccessful treatment where the bacteria enter a dormant persister state and then relapse later.

As for the blood tests, many doctors will recommend doing this. In my case, the herxes did show up very clearly on the CBC. Herxing is expected, so it was not a surprise when the blood test showed evidence of a Herxheimer reaction. However, this was not the primary reason for the blood tests.