r/Lyme

For those who track symptoms and/or receive notifications with a device - what device do you use. For those who use Visible - what are the pros and cons?

I recently purchased the O2 Ring by Wellue and it has helped me understand my heart rate and oxygen levels at the onset of a spell and/or episode a lot. I have learned a lot so far and wish to learn more about my symptoms. I never realized that my oxygen level drops until using the ring. Thankfully, for some reason it vibrates to let me know when it gets to 87 so I know when to go lay down and do some deep breathing. It does not notify me when my heart rate drops. I haven't really looked into this deeply as my brain power is not like it used to be. I'm curious what other devices there are that you use or have tried. I'm strongly considering visible because it is not as expensive and I do not want or need any extras like with the watches.

Looking to hear about people’s results with cistus and artemisinin. Been drinking the tea for a few weeks and pulses the artemisin, think maybe I did too much? After a few days I woke up in the morning very anxious. I stopped and then that night, I had horrible body pain like I used to when trying to sleep. All over pressure, like clots all over, it was horrible. Like my blood is poison. Anyone know what this is? I know people will say herx but then what infection do we think with bad leg pain body pain all over at night?

I was bitten in 2022, diagnosed in 2023. My main symptoms was tingling, pain, burning sensation in my limbs, anxiety and fatigue. I went to a specialist, where the results were positive so I took amoxicilin for a month. After that the symptoms started to fade and eventually became so minor, that I didn’t even bother taking care of it. There were flare ups durind the past two years but nothing serious. Everything was fine until a week ago, when my burning sensation in the nerves came back, alongside with feeling light-headed and light pressure in my skull. I made an appointment with a doctor for the 21st of April, but everytime I feel like that I am either going to have a panic attac or faint. I decides to buy the Buhner protocol herbs because I cannot take it any longer and curious if I can make peogression. Further more I quit my job two days before my symptoms reoccures which makes my anxiety even worse. Sorry for my spelling mistakes but i feel terrible. Should i take the buhner protocol?

Bartonella henselae. The bacteria behind cat scratch fever. 15 to 40% of cats carry it depending on age and flea exposure. Most doctors think the infection is mild and self-limiting. In some people it isn't.

It's an intracellular pathogen. Hides inside red blood cells and the endothelial cells lining your blood vessels, including the ones in your brain. Your immune system can't see it properly. It sits there causing chronic neuroinflammation for months or years.

Edward Breitschwerdt's lab at NC State has been documenting this for over a decade.

The research:

A 2019 case study: a boy developed sudden psychosis and seizures from confirmed Bartonella in his blood. Treated with antibiotics. Resolved.

A 2024 review from his lab called Neurobartonelloses: emerging from obscurity catalogued the full neurological damage - encephalitis, peripheral neuropathy, cerebral vasculitis, psychiatric symptoms including psychosis.

A 2024 study from Columbia and NC State tested 116 people. Patients with psychotic disorders were three times more likely to have Bartonella DNA in their blood than healthy controls (43% vs 14%, p=0.021).

A 2021 pilot study at UNC and NC State found the same thing. 65% of schizophrenia patients had Bartonella DNA, 8% of controls.

Two independent research groups. Two separate patient populations. Same result.

Why testing misses it:

Standard testing is an IFA antibody test. But Bartonella hides inside cells and your immune system may never mount a detectable antibody response. The Columbia study proved this directly — the antibody test could not distinguish patients with psychosis from healthy controls. The PCR could. Same blood, same patients, different test, different answer.

A negative IFA does not rule out Bartonella. It rules out a detectable antibody response. Those aren't the same thing.

Better tests: enrichment PCR or droplet digital PCR (ddPCR). Most doctors have never heard of either. You have to ask.

The symptom pattern:

• Brain fog that started suddenly, not lifelong
• Rage or irritability that doesn't fit your personality
• Anxiety or panic that SSRIs don't touch
• Insomnia the wired kind, not the tired kind
• Unexplained foot pain (endothelial inflammation and peripheral neuropathy)
• Linear raised marks on shins or thighs (look at your legs)
• Headaches that track the same timeline

Any one of these means nothing. Four or more with cat or flea exposure warrants testing.

The antibiotic clue nobody talks about:

If you've ever taken antibiotics for something unrelated dental infection, UTI, sinus infection and your brain fog temporarily improved, that's meaningful. Random antibiotics can partially suppress Bartonella. Most patients and doctors read this as evidence that the dental issue was the problem. It can also be evidence of a bacterial cause hiding underneath.

Treatment:

Chronic Bartonella requires targeted antibiotics for weeks, not days. The specific drugs and duration vary by species, severity, and individual response. This needs a doctor familiar with intracellular infection protocols. Herxheimer reactions (feeling worse before better) are common as bacteria die off.

What to ask your doctor:

• Enrichment PCR (BAPGM) or ddPCR testing, not just IFA
• Cat scratch history, not just "do you have pets"
• Whether any prior antibiotic course coincided with symptom improvement

Bartonella isn't responsible for every case of brain fog. It's worth checking when the symptom pattern fits and the fundamentals have already been addressed.

What about the cat

I'm not a vet. But here's what I learned when I went down this road.

Most cats that carry Bartonella show no symptoms at all. Your cat isn't sick. It's a carrier. You won't know by looking at it.

Kittens are higher risk than adult cats. They carry higher bacterial loads and they scratch more. Rescue kittens with fleas are the highest risk combination. That was my situation exactly.

Cats can be tested. A vet can run PCR on blood to check for Bartonella. But a negative doesn't mean they never had it. Cats can clear the bacteria on their own over time. A cat that infected you 6 months ago might test clean today.

The single most important thing you can do is flea control. Bartonella lives in flea feces. Fleas defecate on the cat. Feces gets under the claws. Cat scratches you. That's the transmission chain. Break it at the flea step and the rest doesn't happen.

Topical or oral flea preventative. Year round. Not just summer.

Beyond that. Keep claws trimmed. Don't let cats lick open wounds. If you get scratched wash it immediately and thoroughly. Don't play rough with kittens using your hands.

Don't get rid of your cat. That's not the message here. The message is keep the cat flea-free, handle scratches properly, and if you develop unexplained neuropsychiatric symptoms with the timeline and symptoms I described, tell your doctor you have cat exposure.

SOURCES

• Breitschwerdt EB et al. Bartonella henselae bloodstream infection in a boy with PANS. J Central Nervous System Disease. 2019. DOI: 10.1177/1179573519832014
• Lashnits E et al. Schizophrenia and Bartonella spp. Infection: A Pilot Case-Control Study. Vector-Borne and Zoonotic Diseases. 2021. PubMed: 33728987
• Bush JC, Robveille C, Maggi RG, Breitschwerdt EB. Neurobartonelloses: emerging from obscurity. 2024. PubMed: 39369199
• Delaney S et al. Bartonella species bacteremia in association with adult psychosis. Frontiers in Psychiatry. 2024. DOI: 10.3389/fpsyt.2024.1388442
• Breitschwerdt EB et al. One Health Zoonotic Vector Borne Infectious Disease Family Outbreak Investigation. Pathogens. 2025. DOI: 10.3390/pathogens14020110
• Breitschwerdt EB et al. Bartonella Associated Cutaneous Lesions in People with Neuropsychiatric Symptoms. Pathogens. 2020. DOI: 10.3390/pathogens9121023

Has anyone here followed a protocol using gentamicin, doxycycline, and rifampin—especially one supported by studies or clinical guidance?

I’ve been doing gentamicin injections for about a week, and it’s the first thing in 6 years that has made a noticeable difference in my Bartonella symptoms. I’m aware of the potential risks like hearing issues, but from what I understand, careful monitoring can help reduce that risk.

I’m considering whether to add IV doxycycline and possibly rifampin to build out a more complete protocol.

I know a lot of people have had success with herbs and oral antibiotics as well, so I’d really appreciate hearing what’s worked for others—especially any experiences with combination therapies like this.

On Saturday at midnight, I was lying in bed with my dog and felt something crawling on my hand. I quickly grabbed it, panicked and unfortunately didn’t save it. Photos/reddit have identified it as an adult male deer tick. I thought it may have been a bedbug. The paper towel I grabbed it with did have some blood.

I have no idea if it fed on myself or my dog and am worried about waiting 6-8 weeks to confirm whether either of us have Lyme. Dog has started preventatives now.

Only signs I have: the day before this happened, I noticed I had 3 bug bites on my arm and 3 on my leg- extremely painful and itchy because I react badly to any bites. The pattern of three bites is why I originally was worried about a bedbug over a tick since the only place I go is my backyard to take my dog out. The timing of having these welts and then a possible tick bite are unfortunate 😕

Without any confirmation of an actual bite, I’m unsure if my doctor would prescribe Doxy. Would it be too late to be helpful if I don’t take it now and wait for test results? I’m a mess of indecision and anxiety over this.

im wondering if any of you had benefits from either of these. expecially for depression/anhedonia. i swear to god im ready to try anything. if youve gotten better. id like to know what actually worked to get you better.

Overall its going well and i can be thankful to make so much progress. On the other hand i have tried so many things while being symptomatic af, trying to make it in different fields, try to learn things but i always end up in burn out or the question "who am i" even tho im talented.

It all feels the same. I lose interesting in so many things, i focus on my health, i do so many things at once. Been trying to program for years now, theres always this doubt that "im too sick to make it work" even tho its good and im smart, its the same for many other things. I always feel like others watch me, my family doesnt care (its true) they have already given up because they are low moral people.

So... there is no emotional support, there is only mself... i feel like you need stable high energy for a job but when you have symptoms and youre focused on healing it always changes... when i pushed hard for a job, my health got worse. Now when you let go and you focus on treating yourself, you still study on the side but you end up with the same feeling of getting behind in life, getting nowhere an getting afraid - its crazy, maybe someone can relate. Its also because as you treat on, you change too. Im glad that i started Buhner herbs one year ago...

So to make it short i always end up at the same point: A wise man that is completely disoriented. I give the best advice for my friends, it always works out perfectly. It just happens in the process of "being", i can do a million things and they all lose their meaning. Its not depression. Its also survival. If you push too much in that direction, you cant heal.

hi, there is not a subreddit for Rmsf i guess. I see a lot of posts here. plz let know if there is a better place to post this.

To preface this post, I got a blood test done 8 days after my bite and only tested positive for rmsf antibodies but not a positive? idk how that works but they say I was at least " exposed to it"...

I was working in the garden recently, I thought I got bit by a spider cause when I went in for the day I had a red itchy raised bump (no tick on my body) so I didnt bother with it. just itched... fast forward to exactly 7 days later.

7 days after the bite, I had a headache most of the day and slept a lot. later that day I was laying in bed at night and all the sudden started feeling numbness like I couldn't even feel the air around me, then rush of hard pins and needles. It felt like someone was dragging velcro from my feet to my face. My cheeks even. I knew something was wrong at that point. I thought I may be having an extremely bad anxiety attack so I tried to sleep through the night, but mostly spent all night shaking and tensed up, sweating and cold.

The next day Monday (Day 8) I went to the ER cause it was happening again. They suspected Rocky mountain spotted fever. Even tho I had no rash or fever the whole week I had the bite. They gave me 10 days of Doxycycline. This same night I did notice some red spots on my feet but they went away the same night of my first dose of doxy.

Over the next few days I felt absolutely worse after the doxy kicked in. 3 days into the doxy I was on and off feeling good than randomly like back on my death bed. I couldn't really write or take notes. Processing information was very hard for my brain. I went back to the Dr on Day 4 because I was not sure if I was supposed to be still feeling that bad. I had new symptoms and couldn't really turn my head from my neck being so stiff. That did get better over a few days but it still hurts. I can turn my head at least...

So today, is my 6th day of treatment and im still having horrible symptoms on and off. My body feels extremely bad. I cant really regulate my body temp. I still havent actually had a fever but I keep cold sweating a lot. like my feet are soaked on and off. My face still getting tingly. I was washing my hands in regular cold water I use it all the time like that on the inside of my hands it felt cold but on the back of hands it felt like the water °30 and ice. My hands felt like they had running water over them for several minutes after I turned the water off and dried them.

I am mostly starting to wonder what signs or things I need to be looking for at this point. I feel like my Doctor is brushing me off because I do have anxiety regularly. She seems like a "I need to get to my next patient as soon as possible" type of doctor (not that she is a specialist or anything.) She is just a regular pcp boo boos and pills. She just wants to give me pills instead of addressing what might be going on. She didnt even think another Test would be worth it, which im not sure is true or not.

I wish I could call Dr. house :( I dont care about being smiled at or not. I just want to feel like im being heard and not brushed off. She basically said I dont need to worry about it anymore since im on Doxy and didnt say if there was anything I need to look out for that would indicate any other more serious issues caused by the delayed treatment.

So the big questions:

What is something you would worry about at this point?

Undiagnosed for 17 years with a positive Western bot with significant chronic fatigue and DHEA has helped me quite a bit.

it's helped with my air hunger. putting it here in case it helps anyone. I owned the bottle for awhile it's 100mg and it wasn't till years later that I took 200 mg and found a big relief suddenly.

Hi all, I need to test my home for mold, mycotoxins etc. but am overwhelmed with making decisions regarding which test to choose. EMMA, ERMI, HERTSMI, getting an inspector instead of testing… I have lyme & co, MCAS, autoimmune issues… over the last 10 years I had 2 water damage incidents which I believe weren’t fixed very well. The basement is full of black mold. In the living area there’s not much visible mold (except for just a little in the bathroom). If I spend money on something I want to make sure it’s the best option for what I need. Which of the options would make the most sense?

(Edit: I’m def planning on moving out longterm but this is my childhood home and I can’t move out lightly, especially because it’ll be a huge undertaking emotionally and physically. So I want/need some kind of confirmation or evidence that I’m in fact living in mold/mycotoxin/aflatoxins etc. So even if I move I’d like to test this apartment. Also, in the country I live in we don’t have ventilation systems.)

Supposedly smilax binds endotoxins in the bloodstream which reduces herxing. I've heard it can upset your stomach a bit though. I'm considering giving it a try. Does anyone have any experience with it/thoughts?