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Weaning Antibiotics - Not so fast...

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Posted 10/16/2023 3:10 PM (GMT 0)
Well I made it a total of six days without Malarone, Ceftin and Azithromycin. I am throwing in the towel today - and resuming antibiotics. Last two days have been very hard, exhausted, headaches, toe/finger pain and legs are painful. Bladder and pelvic pain driving me nuts too. I guess this is a sign that I am not at a point my body can take over and continue the fight. I am on herbals as well - Crypto plus, Allicin, boluoke, artemisinin (3 days/week), and started oregano oil two weeks ago.

Feeling a bit defeated today folks.. I do plan on starting LDN at .5mg as soon as it's compounded. Perhaps that will help things out a bit as well. I have been on the main drugs Malarone, Ceftin and Azithro for about 9 months, guess it's not enough? Time to change things up? UH.
Posted 10/16/2023 4:18 PM (GMT 0)
"for about 9 months.......Time to change things up?"

Probably. My LLMD had me on rotation for some ABX about every four to six months. I used about six-seven types for multiple tick illnesses.

Doxy was consistent though (and its summer sun version...Biaxin(?)).
Posted 10/16/2023 6:22 PM (GMT 0)
Agreed on the changeup - my LLMD changed from Ceftin to Minocycline after about four months - but I went back to the Ceftin when the bladder went haywire. Perhaps I should have stayed the course. They called today and said to get back on the ABX horse and we will change things up next meeting.

It's terrifying that I treated this so long, but I have come a long ways symptoms wise. Just very concerning that the ******s are still there. I appreciate the response Astroman - you have had quite the journey. Interestingly I was twelve when I first had lymes - two course of Rocephin via PICC resolved that 32 years ago. I still believe this was from a new bite last year. Who knows I guess.
Posted 10/16/2023 7:15 PM (GMT 0)

SlowButSteady said...
Well I made it a total of six days without Malarone, Ceftin and Azithromycin. I am throwing in the towel today - and resuming antibiotics. Last two days have been very hard, exhausted, headaches, toe/finger pain and legs are painful. Bladder and pelvic pain driving me nuts too. I guess this is a sign that I am not at a point my body can take over and continue the fight. I am on herbals as well - Crypto plus, Allicin, boluoke, artemisinin (3 days/week), and started oregano oil two weeks ago.

Feeling a bit defeated today folks.. I do plan on starting LDN at .5mg as soon as it's compounded. Perhaps that will help things out a bit as well. I have been on the main drugs Malarone, Ceftin and Azithro for about 9 months, guess it's not enough? Time to change things up? UH.

Have you thought about doing a pulsed protocol?

That's what Dr. J does.

So perhaps you could take the meds Mon/Wed/Friday one week,...three weeks on and one week off.
Do that for a few months.
Then slowly extend the weeks off.

Its worth a try.
Posted 10/16/2023 7:39 PM (GMT 0)
Girlie, I have been reading on Dr. J's pulsed dosing and am interested. The initial plan was to stop for a week then resume for three. Then stop for two and resume for two, ect. Clearly I am not at a point where I can drop antibiotics for a week. Will see what my LLMD recommends next meeting. I do know there will be a change in antibiotics of some sort. Probably rode the Ceftin train too long.. Also read about Liposomal Rocephin? I was on a month of IV rocephin and that rapidly improved the joints. Didn't kill everything however so of course suspected co-infections are prevalent. That, with all the herbals should clearly do something. Really feel like I need better brain penetration.

Trying to keep my chin up.
Posted 10/16/2023 10:31 PM (GMT 0)
“Really feel like I need better brain penetration. “

Nothin better than minocycline for that!
Maybe add or switch out one for mino
Posted 10/17/2023 12:37 AM (GMT 0)
Not sure what you're trying to treat here, but a rapid relapse like that is suggestive of bartonella, as borrelia doesn't typically regrow that fast.

Malarone and cryptolepis are usually effective on bartonella. Azithromycin maybe, depending on how resistant or susceptible your bartonella infection is. I never found cephalosporins (eg ceftin, rocephin) to do much to bart. I did find minocycline quite effective against bartonella.

Joint pain is probably borrelia but you already seem to have made progress on that with the Rocephin. I'd recommend not to heavily hit both bartonella and borrelia at the same time as the herx can get quite bad.
Posted 10/17/2023 7:45 AM (GMT 0)
Another vote for bartonella as a main focus. While keeping pressure on lyme.

Several recent studies have found it to be present in the most hard to treat cases and it seems common for it to take a long time to turn around even if you are on antibiotics known to be active for it.

I would also consider anti biofilm agents as both lyme snd bart are extensive biofilm producers
Posted 10/17/2023 12:45 PM (GMT 0)
Interesting, we have been focusing on babesia since I started treatment through LLMD. I have mentioned bartonella a couple of times but they seem convinced babesia is present. I have been on boluoke twice daily for the last 7 months to address biofilms. Joints are definitely in play here - fingers, toes, knees were bad the last two days off antibiotics as well. I was on Methylene Blue for two months as well - with no reaction at all. But, given bartonella can be so stubborn I believe I need to pick a path and go.
Posted 10/17/2023 4:16 PM (GMT 0)
Borrelia dies slowly, so even after 2 days off antibiotics I could still have some joint pain from the die off.

I found that some of the babesia meds worked for bartonella, particularly mepron/malarone, so when my doctor said to treat babesia, I just went along with it even though I knew it was mainly hitting bart. I'm surprised you had no reaction to methylene blue though.

If you want to deal with borrelia in the joints, I've had success with valtrex (valacyclovir), but based on the very limited in vitro research on similar drugs, susceptibility to this type of drug seems to be a unique vulnerability of borrelia, and it has little or no effect on bartonella or babesia.
Posted 10/17/2023 4:20 PM (GMT 0)

SlowButSteady said...
Interesting, we have been focusing on babesia since I started treatment through LLMD. I have mentioned bartonella a couple of times but they seem convinced babesia is present. I have been on boluoke twice daily for the last 7 months to address biofilms. Joints are definitely in play here - fingers, toes, knees were bad the last two days off antibiotics as well. I was on Methylene Blue for two months as well - with no reaction at all. But, given bartonella can be so stubborn I believe I need to pick a path and go.

boluoke or other proteolytic enzymes are good for fibrin deposits and may have some limited effect on biofilms - but biofilms are something different to fibrin - and need a different approach.
bartonella make biofilms from polysaccharides and eDNA -
sugar alcohols like xylitol may be more fitting to the polysaccharide based biofilms.
Dr J uses this as his man biofilm agent.

what dose of MB were you on and what did you take with it
Posted 10/17/2023 4:35 PM (GMT 0)

Garzie said...
bartonella make biofilms from polysaccharides and eDNA -
sugar alcohols like xylitol may be more fitting to the polysaccharide based biofilms.

Borrelia biofilm was found to consist of alginate and eDNA

https://pubmed.ncbi.nlm.nih.gov/23110225/

Has there been similar research which characterized bartonella biofilm?
Posted 10/17/2023 4:50 PM (GMT 0)

Quin said...

Garzie said...
bartonella make biofilms from polysaccharides and eDNA -
sugar alcohols like xylitol may be more fitting to the polysaccharide based biofilms.

Borrelia biofilm was found to consist of alginate and eDNA

https://pubmed.ncbi.nlm.nih.gov/23110225/

Has there been similar research which characterized bartonella biofilm?

i have been looking into this recently Quin - as i was under the impression until recently that we didn't know if bartonella forms biofilms - but i have found a couple of references recently which shows that it does and describes them as made up of proteins, polysaccharides and eDNA.

some of the top people researching this seem to be on the fence regarding bartonella forming persister cells - which is usually highly associated with biofilm formation - so i wasn't aware until recently that the biofilm question had been answered

i will dig out the references if you need them - or you may find the same papers with those words as search terms
Posted 10/17/2023 5:52 PM (GMT 0)
Quin, at the time I was on methylene blue:

Azithromycin 250 mg once daily
Ceftin 500 mg twice daily
Malarone 1 tablet twice daily (01/13/2023)
Probiotic daily
Crypto-Plus 20 drops twice daily
Boluoke 1 capsule twice daily
ATP 360 2 capsules daily - not taking
Curcumin 2 capsules 3 times daily - not taking
Burbur Pinella full dropper once daily
Meloxicam 15 mg daily
Methylene Blue 50 mg twice daily
Quercetin 2 tablets twice daily
Artemisinin 4 tablets twice daily Th,F, Sat

Didn't notice any herx from it, turned my pee blue which was fun. Maybe cleared my head a bit - no noticeable pressure or headaches during that time? It all blends after awhile..
Posted 10/17/2023 9:49 PM (GMT 0)
Makes sense - MB is active for bartonella and probably lyme - but the doses where it really starts to be effective are much higher 400-600mg a day - as per Horowitz latest paper.

it was originally used as an antimalarial at those kind of doses also - ad may have some activity for Babesia

the 50mg 2x a day is used in geriatric populations for mood
Posted 10/18/2023 12:08 AM (GMT 0)
Cripes, at that level I would look like a smurf. As for mood - I'm pretty even keeled and I'm not geriatric (44). At what point do you question moving from one LLMD to another. There is another option in Waukesha, WI that intrigues me as well. After nine months treating I was hoping for more improvement but so goes life.
Posted 10/18/2023 1:40 AM (GMT 0)

SlowButSteady said...
Cripes, at that level I would look like a smurf. As for mood - I'm pretty even keeled and I'm not geriatric (44). At what point do you question moving from one LLMD to another. There is another option in Waukesha, WI that intrigues me as well. After nine months treating I was hoping for more improvement but so goes life.

When I plateaued with my LLND and he didn’t have anything to offer (IMO) I moved on - I went to a couple more LLND’s but wasn’t impressed.
That’s when I flew to Washington DC to Dr. J and had the worst herxing on the Bartonella/Persisters protocol (after doing several months treating Babesia.)

I persevered and I am in remission now.
Posted 10/20/2023 11:36 AM (GMT 0)

SlowButSteady said...
Cripes, at that level I would look like a smurf. As for mood - I'm pretty even keeled and I'm not geriatric (44). At what point do you question moving from one LLMD to another. There is another option in Waukesha, WI that intrigues me as well. After nine months treating I was hoping for more improvement but so goes life.

lol - yep, i wasn't suggesting you were geriatric - only that low doses of 50-100mg / day are typically mild enough to be taken long term by the elderly.

i think 100mg along with other abx will have some mild beneficial effects - it did for me - but I'm not sure if it would be profound enough for you to really notice it alongside the effects of the other abx

the 600mg doses are only given short term usually - though there are some long term large scale historical trials of it in humans for 6 months at 400+mg / day

on the treatment direction - treatment for these diseases is typically long - often years - my own approach has been based on trying to avoid erratic bouncing from one all-or-nothing treatment to another - and instead has been a careful systematic progression by layering things that seem to help - be they herbs, drugs, lifestyle changes, dietary changes, exercise etc etc - to gradually move forward.

all the best !
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