Seeing Dr J on Monday.

I’m probably just being really anxious. But I went to deep down the rabbit hole to stop now.

Can we opt to skip the stabilization process. I really just wanna get on these antibiotics and deal with this before anything new pops up.

Can antibiotics make me worse. I have positive Lyme results but I’m one band shy of the cdc positive for igg. Also positive for bartonella.

I see a lot of people say they can’t tolerate antibiotics. If I’m fine taking 5 doxy a day I should be okay with anything Dr j can throw st me right. How would I know if I wasn’t tolerating antibiotics or if it was just a herx.

How do you know the difference between herxing and a flare.

Am I taking an actual risk taking antibiotics. I don’t have any energy but I’m not disabled or bedblund yet. I wouldn’t want to start treating and end up in worse shape than I am now irreversibly or something.

It's perfectly understandable to be nervous about this stuff. It's hard to trust anything when you know what a long and winding road recovery can be. Keep reaching out and asking questions here, and definitely bring up all of your concerns with your doctor! They are valid. I feel this way with every new thing I try, for sure. If you already feel so bad, it's hard to fathom voluntarily making yourself feel even worse, even for a good reason, right?

It's great that you tolerate high doses of doxy, so you should be fine on anything else in that family of drugs. But there are other families of antibiotics - cillins, sulfa, etc. - that you might respond to differently.

I am not a patient of Dr. J's clinic, but to me, a stabilization period before treatment sounds like a great idea and is relatively common among LLMDs with any approach (pharma, herbal, frequencies, etc.). If your body is symptomatic, then there likely is inflammation and damage occurring already. If you stir things up with antibiotics by killing pathogens, disrupting the gut, and/or busting biofilms and cysts, then the herx you end up with will be worse and possibly cause further damage (which it sounds like is exactly what you're worried will occur) if you are in bad shape to begin with. If they have ideas for stabilizing you - cleaner diet, steady detox, mental health, reducing inflammation, good digestion, controlling MCAS or POTS or other conditions, etc. - then you will tolerate antibiotic treatment much more easily with easier herxes.

When I say that I don't tolerate pharmaceutical antibiotics, I mean side effects are intolerable - that I vomit and have diarrhea all day for the duration of the prescription. (For me, only azithromycin is tolerable.) Most people do not react this way! A medication allergy involves hives, a fever, and/or airway problems, and as Girlie said probably would show up right away, although an allergy can arise at any time. (My child tolerated an antibiotic fine for weeks, but then got a flu shot and was allergic to it the next day.) But you'd notice and deal with it.

Context is really all we can use to figure out if you are having a herx or a flare. Stress, exertion, a virus, bad food choices, barometric pressure drop, etc. - flare. Nothing out of the ordinary except stepping up treatment and detox - herx. If you are already overloaded or do not detox well, then a herx from any kind of "killing stuff" treatment can be miserable, damaging, and disabling. That is why treatment involves so much more than antibiotics, and cannot be rushed. But these things generally are not irreversible!

Antibiotics usually make people feel worse while they are herxing but better overall. Some people only feel okay while on them! As with any drug, there are risks, so sure, they could cause you harm - gut permeability, c. diff, grey teeth, sunburn. But you know that Lyme is harming you as well, actively, so you have to decide what feels right to you. And keep in mind that if you don't tolerate pharmaceuticals, develop allergies to them, or simply decide to go a different route, then you do have other treatment options.

Flayvor said...
Stay tuned for Monday when I have 8 million questions and am a total hot mess. I wish I was able to better phrase what I’m trying to say but it’s hard to get the questions to come out right in writing.

I hope Dr j isn’t to tired from his trip on to London, I’m the first appointment on Monday

But you are seeing a NP right?

Quin said...

Flayvor said...
How do you know the difference between herxing and a flare.

Flare is mainly a problem with bartonella, due to its tendency to cycle into red blood cells periodically. If you take antibiotics that disturb it but are not enough to kill it, then the bacteria may become active and attack the red blood cells. I had this happen with amoxicillin, clarithromycin, and valproate, which AFAIK are drugs that Dr J usually does not prescribe. The symptoms were mainly that I started feeling short of breath, the rash got worse, and I got a bloody nose.

Flayvor said...
Am I taking an actual risk taking antibiotics. I don’t have any energy but I’m not disabled or bedblund yet. I wouldn’t want to start treating and end up in worse shape than I am now irreversibly or something.

Side effects vary depending on the antibiotic. For example, ciprofloxacin can cause tendon rupture.

===========================================================================

Flares happen with lyme as well as bartonella.

Dr. J prescribes amoxicillin. He does seem to prefer azithromycin to clarithromycin.

Both Cipro and levaquin can cause other issues - Peripheral neuropathy (that could be permanent), CNS side effect along with risk of tendon rupture.

"In 2016, the FDA enhanced warnings about the association of fluoroquinolones with disabling and potentially permanent side effects involving tendons, muscles, joints, nerves and the central nervous system. "

The list keeps getting longer.

https://www.fda.gov/news-events/press-announcements/fda-updates-warnings-fluoroquinolone-antibiotics-risks-mental-health-and-low-blood-sugar-adverse

"Sure, but usually for reasons other than antibiotics. I found that taking antibiotics that bartonella was resistant to could make it flare. Borrelia tends to resist antibiotics by becoming inactive."


Well, with antibiotics for lyme, we call it a herx. It happens...just like it does with bartonella.

"He may prescribe it for some things, but amoxicillin usually isn't recommended for bartonella. I took it, and it did not kill bart."

Dr. J is not just treating bartonella....lyme is being treated at the same time as Babesia...and then again while treating bartonella. So, there is good reason to prescribe amoxicillin. Also, other confections - mycoplasma, ehrlichia...etc..etc..

Also, just because you "took it, and it did not kill bart" doesn't mean it shouldn't be prescribed. It could be what you took with it...who knows...or WHEN you took it. ie maybe you had other infections that had to be treated first.

I experienced Bart herxing...at first I thought I might have Sepsis because of my symptoms - it was so bad. But each cycle it was less and less.
Confirmed by Dr J - he says definitely you can have bart herxes.

I don’t know technically if they are true herxes but it’s definitely a worsening after being on the bart meds.

I think The Bart specialist - Dr M also confirms that you herx from Bart treatment.