Reasonable Timeline

Borrelia (Lyme disease) tends to react to certain antibiotics by going into a dormant state. When the antibiotics are gone, then it comes back. So I treated bartonella first, and during this time, the borrelia infection became mostly inactive. Once the bartonella was gone, I started hitting borrelia with stuff that would actually kill it. So this kinda spread out the herx so I wasn't dealing with everything at once.

I definitely had more infections than just lyme and bart, including viral infections and mold. Most of these were not that hard to deal with. The mold didn't cause much herx, it would just slowly go away with antifungals, so I would just treat as necessary. When I would get covid or influenza, I would treat with atovaquone or nitazoxanide. Mostly I used atovaquone since it also hits mold, but if I got a virus where that didn't work then I would take nitazoxanide. These two drugs didn't cause much herxing, except for atovaquone hitting bartonella.

Yes, the detox is difficult. I would sweat and pee a lot, and it would keep me up at night. Bartonella was a bit worse, as it also caused painful diarrhea. I took a bunch of hydrocortisone so my blood pressure wouldn't drop too much when detoxing.

- Posting this again just in case so it doesn't get lost. I posted it literally 1 minute before the last response nd I feel it's important to point out for those in a situation like mine. -

But this is a technical thing. I got sick nd healed (without meds, except benzos) from October 2011-May/June 2012 then again for a few months in 2014 or 2015 (can't remember), then thought it was benzo withdrawal because I felt like I was literally losing my mind from November 2017 to January 2019 (this one time I used Doxy for 1 week though and eventually got better) but this was because I was told it was benzo withdrawal, which you cannot use supplements to get better, or you will get worse and not heal (based on prof. Heather Ashton). The info about benzo wd and lyme is so interesting because they both are almost alike in every way in regards to symptoms but also the way they present (comes back years later even without use of the drugs they use, etc.) but the treatment is completely the opposite (no drugs vs the need of drugs). I think if both this forum and the benzo buddies forum were to collide, that would be truly be something. I think it was cause a lot of people to scratch their heads and question things. Both present with years of illness and lack of answers, bad testing, etc.

Takes benzo for 2 weeks = 2 years of withdraw (yes, seriously, happens more than you'd think)
Gets bit by a tick and treats years later = 2 years of treatment due to chronic lyme

Symptoms: All of them (lol, but seriously)

Get what I'm saying? Then there's other things in the mix that both works have going on too, like mycotoxins and lyme. It really comes down to things screwing with the body at the end of the day. Makes me feel like a crazy person when this is sadly such a logical statement. It all looks like quackery to many, but it's not because there's cases from both in the literature. I feel like a nutcase so often and I believe this is part of the reason I want to know more, because it's what has helped me in my own journey to truly figure things out. If I take some of these things they could give me a "setback" in the benzo world. If I go without, my lyme/co-infections only get worse. But then again, people can get worse with both. I think this has to be one of the most confusing things to ever cross my mind. Both are dangerous. Both cross into each other. Unfortunately, both worlds don't actually know about each other so well though. When I talk to benzo people they say they would never take antibiotics, ever. This is because they know the damage they do and how they ramp the CNS up for many months. Then the same for lyme, they will willingly take some of these drugs willingly even though it could potentially be making them worse due to something else, not the infection (because testing isn't always accurate, and if we treat the symptoms, we may be crossing into something else... like benzos or SSRI withdrawal, which all present with the same symptoms EVEN if you are still on the same dose as weeks ago). Who else wouldn't feel crazy after this? It's not like it's easy to figure out. I have tried to figure it out. The best way for me to feel more sure is to try testing more which I plan to do and to go with my gut feeling.

I honestly feel like whoever is reading this will try to come up with something to combat my logic but in my opinion, I think I hit the head the nail on the head with this for a certain number of people. But one side has to prove itself as the reason for why I am sick. DID I actually have WD? Or did I actually get bit. Then the way I got better makes it even more confusing. I did get better but it was with time and no meds, until I got pneumonia and Took 1 week of doxycycline. This COULD potentially have killed off enough for my symptoms subside for some time, so long as my immune system and CNS system were holding up. It wasn't an instant recovery, but between good eating and getting outside, I felt better as the months went. Now I have some similar symptoms, same neurological issues, but different at the same time. So for me, it's maddening.

This is part of the reason I feel so crazy though. Excuse my rant, I needed to say this. Who knows, maybe someone else will be caught in the same predicament as I am here. But I am taking antibiotics right now, but they are on the "safe" list, so long as it's not anything like quinine or fluoroquinolones. But there's others in the mix I am supposed to avoid for many years afterwards too, such as oregano oil. There's many things here that have me twisted up.

And what are LLMDs gonna say, that it's quackery? Because the other side might say the same thing. Both are in the literature too though. It's really such a mess.

But I feel worse on this, but then better at times too. I just feel a mix. I don't know how to describe it. I felt like this through the last couple of years. I think doing some extra testing would be helpful for me though. I really think that a lot of the medical professionals I have come across have been quite lazy and dismissive about my issues. It almost seems like they are eager to jump on something and get you treated right away, but this would be a rookie mistake in the wold of medicine. Truly taking time to assess the symptoms and "test, don't guess: but so many docs say not to worry and that it's a waste of money, but the more I think about it the more I believe it might be the best option. I mean I have only some info and some of it is broad, such as high compliment C3a and high compliment C4a, but this could mean, lyme for one, and mold for the other. It could also mean lupus for one and cancer for the other. Never been tested for the latter either. As a matter of fact, I was once told by my neurologist "that's a waste of taxpayers money". Not even joking. A lot of the medical care I have gotten has been awful. I figure getting a new functional medical care doctor might be helpful and then starting from the ground up. It own't be cheap but it might really help me. I just know that something's not right.

Also thank you for not judging that long post. Although it sounds crazy to some, there is a method to my madness. Often times I am the crazy one until later people come to me saying, "wow, you were right!" and it say happens when I receive messages and emails about these things. It's bittersweet. I just wish things weren't so complicated with these illnesses. It makes you start thinking about all of the conspiracy stuff - but I don't even wanna go there. More reason for people to not believe that any of this is all real (benzo wd, chronic lyme, mycotoxin illness, etc.) and more reason to think it's quackery. The majority will forever believe the top 5 killers are the worst, because they kill in numbers, and therefore it's the worst. A classic quantity over quality case. As if those with chronic illness (partially the ones you can't see) don't deserve recognition, but it's like they say, they only miss you when you'e gone. They only wish they could have helped more if they knew more.

Sorry about my rants, but I can't help but speak my mind about this and I know many agree and feel my pain. I suppose it's healthy to speak up about it though. It helps me better accept my situation.

Borrelia resists antibiotics in a partial way, such that very high doses can still kill it, but I simply found it infeasible to take such high doses. I switched to taking drugs that it was not resistant to. Two drugs that consistently worked were sodium valproate, and valacyclovir. I never needed to take more than 500 mg per day, and I would herx every time. Even after a year, borrelia did not seem to develop resistance to either drug.

Bartonella resists antibiotics primarily with efflux pumps, although some strains have beta-lactamase. Amoxicillin didn't seem to do anything to it, so I probably had a resistant strain. I found that I could knock out its efflux pumps with atovaquone, and then kill it with relatively low dose antibiotics, eg 100 mg minocycline or 500 mg azithromycin. 200 mg minocycline was somewhat effective on its own, but I could never take enough azithromycin or clarithromycin to kill it without also taking atovaquone.

Unlike bartonella, borrelia does not hide within cells, so there's no need to force it out of the cells. With bartonella though, this is necessary. I discovered that sodium valproate would coax bartonella out, so I used that since I was going to use it for treating borrelia anyway. If you don't want to use that, some other things that have been suggested are disulfiram, methylene blue, or lopinavir/ritonavir.

Although borrelia doesn't hide in the same way as bartonella, I found that I could make it more vulnerable to antibiotics by taking loratadine. Be warned though that this caused a lot of detoxing, and the loratadine suppressed my immune response a bit, so be careful doing this.

As for "test don't guess" well... testing isn't perfect, so sometimes you have to guess.

And after a lot of guessing, I've figured out what kills these infections, so now I just want to finish treatment and be done with it.

Regarding receptors in the brain, I assume you are talking about benzos. I took benzos and didn't have any withdrawal effects, so I guess everyone is different.

The reason I wasn't sleeping was because of detox and adrenal stress, so I treat that with hydrocortisone and I don't take benzos anymore.

I don't know if borrelia is hiding in cells or biofilm or whatever, I just know what meds cause it to come out, and what meds kill it.

As for high dose amoxicillin or penicillin, some people report success with this, but have to inject it to get a high enough dose. If you have trouble with detox, you might not want to be using high doses, so I found alternatives, but you do whatever works for you.

MCAS was a big problem at first, but I actually found it tends to go away when herxing. When my immune system has a clear target to attack, it doesn't seem to react much to everything else.