Hope for Chronic Bart and Lyme

i agree - i think they should publish the adverse effect he is seeing in his patient population and i have left comment to that effect on the pre-print page -

perhaps do the same as the more they see that people care the more likely this data will come out

but i honestly don't think he would be doing it if they are hospitalising or causing irreversible damage to his patients.

so if that is not happening - and people are informed of the risks - why not keep doubling the dose - at least as far as 8x for a few days if it yields results

people die from lyme disease and related complications also - at least he is trying to help some of the sickest people - even if he doesn't have perfect tools
and if we don't have perfect tools - it makes perfect sense to me to experiment with the ones he does have to try and find how they can be most effectively used - as long as everyone is informed.

which is exactly what the paper is about - no ?

Garzie said...
i honestly don't think he would be doing it if they are hospitalising or causing irreversible damage to his patients.

I guess that's what we don't know about. It's always easy to say: "Lyme caused it, not quintuple Dapsone". Lyme patients are treated like leprotic anyway. And maybe renal damage has been done by Lyme, not saying it hasn't. That's why regular testing is important. Say, you're on protocol A for a few months, your liver/kidney results are fine, you go for quadruple Dapsone, your GFR drops 50% and remains around that post Dapsone treatment and it's somewhat hard to disagree it hasn't been caused by the drug itself. Of course we can come up with theories such as "kidneys were infected by pathogens and killing them them caused renal function to drop by 50%" but that's something I don't personally believe in. First of all, I don't believe pathogens actually help kidneys function better. If anything - it's the other way around and eradicating them should help improve organ function. Second, if it's temporary drop in the filtration rate, then things should improve gradually for weeks after cessation of antimicrobial therapy. If it doesn't, then it was the drug itself that caused the permanent damage to the organ. Both Dapsone and Valtrex are known to cause irreversible long term renal damage. It won't affect every single patient exactly the same way but those are known risks and mentioned in the drug leaflet.

In general it's good to have people like Horowitz around, testing, trialling, researching. It's definitely better than telling everyone 3 weeks of Doxycycline will make one a newborn. At the same time I feel Dr H actions are sometimes borderline dangerous. The fact he behaves (once again, in my own view) somewhat like a celebrity with all those self promotions is not unique in Lyme world. There's plenty of mine to be made and it would be silly to think certain actors wouldn't want to take advantage of that.

Once again though - Dr H does those trials nobody else has done and I appreciate his publishings. It looks like PZA was also quite a successful drug in eradicating Bartonella. It's worrying and frustrating that we often have to decide whether we go for something heavy duty like Dapsone + PZA and risk ending up needing dialysis or renal transplant, or, stick to protocols that take years (clari + rifa).

Garzie: 100% agreed on a need for new drugs. There's too much research on trying to repurpose existing drugs to deal with chronic infection (which we both know is not the same as the first few weeks, perhaps months) and too little work done on creating drugs that - like you've pointed out - would target slow growing germs.

Re: Dapsone and alikes - it sounds like it is more effective than anything else (perhaps on par with Pyrazinamide+Rifa combo). As long as pros and cons are clear to patient, they should be able to make an educated decision whether they want to proceed or not. Hell, at some point I was ready to go for IV Gentamycin + Rifa combo so it's definitely good to have heavy duty drugs available once you join the group of the sickest.

Re: oregano/cinnamon - I'm working on a home made liposomal formulation. I saw it's on sale for almost 130 Euros (Doctor's Inspired Formulations). First thing that came to my mind was that Bart has destroyed my eyes but apparently other people confirm it's the price they see too. Something that costs 1.3 Euros in wholesale (cinnamon, oregano, a few grams of sunflower lecithin) is sold for 100x markup. Lyme is such a business, it's a gold mine for those that treat it. The longer it lasts the more money to be made. Which is why I am not optimistic on research of new drugs that would be effective for bb/bart.

Post Edited (wladek83) : 5/9/2022 5:08:28 AM (GMT-6)

RainyCloud: Sure! My email should be visible so just drop me a line. I've got an ultrasonic cleaner as well!

the pre-print page published my comments to the authors of the paper ( Horowitz et al ) -
it will be interesting to see if there is any feedback or amendments to the pre-print

https://www.preprints.org/manuscript/202204.0296/v1

Oh - I recall my kidney function dropped while on the dapsone.
I think it went down to 54 gfr at its lowest - on my days off (abx were pulsed) the gfr would come back up to 60/62.
Now my gfr is in the 70’s