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Appointment with Dr. J...and continuing on Persister protocol. :(

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Posted 12/14/2018 6:31 PM (GMT -5)

WalkingbyFaith said...

Girlie said...

Yah, I guess. But, in the back of my mind I'm always wondering how many of the symptoms are side effects...as you know when you look them up...they're numerous on all of the antibiotics we take.....

I have actually wondered the opposite. How many of the “side effects” of some abx are actually herx symptoms from the abx killing these infections even in people who are unaware of having any TBD’s.



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My (Girlie) reply:


Well most lyme patients attribute just about everything to herxing...so that's why I do wonder if some are side effects.....but yah, it could go both ways. And it's likely some of the reported side effects have come from lyme patients, right?
I've always (well, almost always) attributed mine to overload of toxins.

But, there are some serious side effects as well with some of the abx. The Dapsone can cause Methemoglobinemia - very serious. It leads to an overall reduced ability of the red blood cell to release oxygen to tissues. This can give the blood a bluish or chocolate-brown color.
Posted 12/14/2018 6:44 PM (GMT -5)
Yeah, I know what you mean. If you read the side effects, it should be reasonably clear which are obvious drug side effects, like what you mentioned. If I read a label on a med frequently Rx for babesia and they had sweats, chills, headache, or insomnia listed as side effects, I would assume it was more likely babesia sx that are frequently brought out by the drug.
Posted 12/14/2018 6:47 PM (GMT -5)

WalkingbyFaith said...
Yeah, I know what you mean. If you read the side effects, it should be reasonably clear which are obvious drug side effects, like what you mentioned. If I read a label on a med frequently Rx for babesia and they had sweats, chills, headache, or insomnia listed as side effects, I would assume it was more likely babesia sx that are frequently brought out by the drug.


Babesia or Malaria is what Mepron is used for. I'm pretty sure sweating is also a Malaria symptom.....
Posted 12/14/2018 8:08 PM (GMT -5)
Most of the effects I got from the antibiotics were herx. The only side effects I got which were directly attributable to the antibiotics were diarrhea and messing with my liver enzymes a bit. And orange piss from the rifampin.

I'm really surprised that people are claiming success with rifampin/rifabutin. It did not work for me at all.
Posted 12/14/2018 8:50 PM (GMT -5)

Quin said...
Most of the effects I got from the antibiotics were herx. The only side effects I got which were directly attributable to the antibiotics were diarrhea and messing with my liver enzymes a bit. And orange piss from the rifampin.

I'm really surprised that people are claiming success with rifampin/rifabutin. It did not work for me at all.

What did you take Rifampin?

Did you try Rifabutin - it's 'stronger'.
Posted 12/14/2018 9:00 PM (GMT -5)
Yeah I took rifampin. I wouldn't recommend it. There are much more effective antibiotics.
Posted 12/14/2018 9:02 PM (GMT -5)

Quin said...
Yeah I took rifampin. I wouldn't recommend it. There are much more effective antibiotics.

Well, there's Rifabutin...and the fluoroquinolones - which do come with 3 (or is it 4) fda black box warnings.

Unless you're thinking about the persister meds: Dapsone/Daraprim?


So what are you going to take for the Bart - pharmaceutically?
Posted 12/14/2018 9:13 PM (GMT -5)

Girlie said...
So what are you going to take for the Bart - pharmaceutically?

Nothing. I don't have any symptoms of bartonella.

Rifampin isn't particularly helpful for borrelia. I don't know how well it works for bartonella.

Also rifampin made my piss orange, messed with my liver enzymes, and stained my teeth.
Posted 12/14/2018 9:37 PM (GMT -5)

Quin said...

Girlie said...
So what are you going to take for the Bart - pharmaceutically?

Nothing. I don't have any symptoms of bartonella.

Rifampin isn't particularly helpful for borrelia. I don't know how well it works for bartonella.

Also rifampin made my piss orange, messed with my liver enzymes, and stained my teeth.

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Rifampin is usually given for Bart , same with Rifabutin.... not so much for Lyme
People are claiming success using Rifampin/Rifabutin for bart
Posted 12/15/2018 8:49 AM (GMT -5)
my feeling is rifabutin works on persister lyme, specifically when used in a triple antibiotic combo combined with biofilm disrupters like stevia, oil of oregano, monolaurin, NAC.

all my issues are largely resolved after 7 months of that. positive for lyme, bartonella, babesia, ehrlichia.
Posted 12/15/2018 10:01 AM (GMT -5)
I took a triple combo (clarithromycin, amoxicillin, valproate). That seemed to be pretty effective. It made me herx, a lot. I didn't take anything specific for biofilms but it didn't seem to matter.
Posted 12/15/2018 10:10 AM (GMT -5)
Rifampin works well for certain patients. Likely depends on what infections and strains are in play and their particular susceptibilities, and also important to find the right synergistic treatment combos. It's hard to extrapolate how others will respond based on our personal responses to medicines, what works for one person may not work for the next. I found rifabutin to be more effective in my case.

I wouldn't touch the quinolones unless I'd exhausted all other options.
Posted 12/15/2018 10:32 AM (GMT -5)
I agree, what works for one may not work for the next. I was inclined to couple all the various biofilm options with my antibiotic protocol given all the positive feedback on them during this year.

i suppose if i didn't do that, and got different results i would have probably wish i would have tried them...but each person is different and responds differently.

i never real herxed, kinda of incrementally just got better over the months. there were days i didn't feel that good, feeling like i was medicated, but never felt the herx like so many describe.
Posted 12/15/2018 11:54 AM (GMT -5)

sierraDon said...
never real herxed, kinda of incrementally just got better over the months. there were days i didn't feel that good, feeling like i was medicated, but never felt the herx like so many describe.


Some antibiotics will not kill the bacteria but will temporarily stop the bacteria from growing. You won't herx because the bacteria don't die, and as soon as you stop taking the antibiotics the infection will come back.
Posted 12/15/2018 1:10 PM (GMT -5)
Some antibiotics work by stopping growth. That doesn’t make them ineffective.
Posted 12/15/2018 2:42 PM (GMT -5)
Right, i agree...i wondered the same thing when i first started, and found that not everyone herxes.

i have been on a mix of bacteristatic and bactericidal antibiotics combinations (3 or 4 antibiotics in combination at any given time) plus various herbals for a year, with no real herxes. the fact that there is no major herx means nothing with regard to gauging their effectiveness. Not everyone can use herx as a gauge for their success, even Dr SP has told me this the onetime he called me. he basically said for those people that don't herx it can be a little more challenging then to gauge their response to certain meds in determining how long to continue with a certain combination, but it is common and not everyone herxes.

a lot of success stories with rifabutin and/or rifampin, especially coupled with biofilm disruptors like Stevia and Oil of Oregano. Glad i followed the wave of positive studies on these subjects as they came out the past year.
Posted 12/15/2018 4:10 PM (GMT -5)

sierraDon said...
Right, i agree...i wondered the same thing when i first started, and found that not everyone herxes.

i have been on a mix of bacteristatic and bactericidal antibiotics combinations (3 or 4 antibiotics in combination at any given time) plus various herbals for a year, with no real herxes. the fact that there is no major herx means nothing with regard to gauging their effectiveness. Not everyone can use herx as a gauge for their success, even Dr SP has told me this the onetime he called me. he basically said for those people that don't herx it can be a little more challenging then to gauge their response to certain meds in determining how long to continue with a certain combination, but it is common and not everyone herxes.

a lot of success stories with rifabutin and/or rifampin, especially coupled with biofilm disruptors like Stevia and Oil of Oregano. Glad i followed the wave of positive studies on these subjects as they came out the past year.

Well the other gauge is improvement.....so you have that.
I'd LOVE to not have herxing....
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