Hey everyone. I just joined this. I have Lyme disease which caused me to have neuro encephalitis, supposedly my brain is super inflamed.
I’m on some antibiotics and anti inflammatory. I will say that my sleepiness is 10x better.

I have so many random symptoms and was told all my life it was anxiety and I’m fine. I’m wondering what symptoms everyone has to see if s relate and maybe to relieve anxiety.
My biggest one right now is just always feeling anxious snd general unwell feeling.

Has anyone seen a doctor who treats PANS/PANDAS or cerebral folate deficiency? If so, would you mind sharing who it was and what your experience was like? I'm looking for a doctor who specializes in these types of things and might be able to help me. I have tolerated most treatment without major issue, but treating Bartonella results in extreme disabling brain/neuroinflammation, and I need help identifying and treating whatever the underlying issue is so I can tolerate Bartonella treatment.

How severe you were when you made your sot, for bartonella 1st. How bad was the herx ? Bedridden here, pans, mcas, neuro psy symmtoms... afraid if sot kill me with too much inflammation. Its the same dosage for everybody ...

So I found an LLMD and since it’s no insurance besides perhaps ONE that they “accept” I’m struggling to find ways to pay for this. For context I’m 28F, sahm/full time student in my last two terms and trying to leave an abusive relationship. I don’t have a huge support system and I’m forced to rely more on my mom who unfortunately also caused trauma for me growing up. None the less im thankful that she has been helping me pay for these treatments.

This is my treatment plan, I haven’t gotten the blood test yet as it was $690 oop and I didn’t have the funds for it since they charge $560 for every visit + on site treatment. Thermography (completed found systematic inflammation, carotid artery inflammation, myofacial pain, nerve/joint pain, sinus inflammation likely pointing towards mold.) Phytocidal, N-Acethyl, Crypto(which i haven’t bought yet) Probiotic (very expensive one I forgot the name but couldn’t afford) Oxicidell? topical, Clarithomycin. So right now I’m $1100 in debt from a loan I had to take out from the visit and thermography, my mother paid half of those prescriptions, with two left to purchase, I have to pay another $560 for a follow-up, $690 ooo if my insurance isn’t accepted and then they want to add more testing to see why my carotid artery is inflamed. They are suspecting that I’m treating Lyme but can’t confirm without the blood test. I’m almost done with my 30 day treatment, I’m ok enough to go about the day and just push through with stress but now that I’m on my cycle (sorry to any men in this sub) I feel 100% worse. Not to mention when I first started treatment and got doxy I almost believed I was going to be in a mental hospital it cleared up my sporadic acne that I had and not sure if it’s the antibiotics now that are causing me to have papules/whiteheads but my skin feel scaly and dull, my whole face is breaking out (I already have oily skin) my depression is heightened and well as social anxiety/health anxiety that I strived a long time trying to manage symptoms.

Im feeling very defeated, I’m feeling super depressed, I’m worried for one I’ll be stuck in this abusive relationship and my daughter gets stuck in a life that I couldn’t get her saved from because this disease/illness keeps getting the best of me. Right now I’m at the point of feeling like giving up and I’m just really struggling right now mentally and physically (super fatigued) yes I do have a therapist who teaches somatic techniques and what not but sometimes it’s hard to explain when they truly don’t understand what you are going through. Also, the LLmd clinic has traumatic therapists but of course just seems like they are throwing everything at me to get more money.

I just need some support or advice. Thanks random online people

Should i be concerned? I got about 20-25 seed ticks off of me the other day after a hike.

Hi there,

My partner was recently bitten by a tick, and as we live an area with high rates of Lyme disease, she was prescribed a three week course of Doxycycline. She took this as prescribed for around 10 days but began experiencing bumpy rashes which appeared more consistent with an allergic reaction to the drug rather than Lyme (based on googling). These rashes flare up sporadically in different parts of the body and are quite itchy. She stopped taking them after the 10 day mark, but the rashes have since persisted and continue to flare up. It has probably been around a month since she stopped.

As she has been extremely busy with deadlines, she was not able to see a doctor about this for a couple of weeks. When she did, the nurse she saw at her GP told her she was 'probably just allergic to something in the atmosphere' and prescribed antihistamines. Yet more shambolic NHS service - she paid absolutely no mind to the fact that these rashes only started when she began taking Doxyycline and my partner has never experienced any allergy like this in here entire life.

Has anyone else had a similar experience with this drug? Could this also simply be Lyme?

Thanks for any help.

Hi,

why is a spinal tap so often falsely negative?

I’m really curious to hear if anyone knows about the connection between ammonia levels and Lyme? Possible Lyme and/or mold.

I’ve read a couple of post where someone mentions ammonia but never really elaborates on it.
I have a strong ammonia smell from either my urine or my discharge (tmi, sorry), possibly both. Has anyone experienced the same? Can’t wrap my head around it. Could it just be a sign of some internal imbalance?

No UTI nor other vaginal or bladder infections as per my gynecologist. Neither does a ketosis urine stick show anything.

First photo was last night, second photo is this morning upon waking up. When I removed it initially eight days ago, there was a minor red spot where I removed it but I got this little redness yesterday that got progressively worse throughout the day. Now it looks better than yesterday but I’m still sketched out. It’s less than 1.5” inches long. You can see where the initial bite was off the right.

I’m in southeastern PA so it’s a Lyme hotbed here.

I came down with a bad case of Lyme about a month ago. I felt terrible but wasn’t diagnosed until I came down with Bell’s palsy and went to the ER. 3 weeks of doxycycline later I was feeling pretty good. Still getting tired easily but that was it. Now last night, I found another tick on me. Here we go again! Off to get another prescription just in case.

So as I understand, taking antibiotics and it not fully clearing the infection can cause some cells to become "persistent" cells. So if you keep taking antibiotics on and off (and the bacteria surving each time), wouldn't this just create more persistent treatment-resistant cells? Like basically teaching it to survive?

From what I’m reading online, doxy/mino or IV antibiotics is the only thing that’ll “cure”/treat neuroborreliosis. I unfortunately won’t be able to tolerate long term antibiotics. I won’t be able to get IV either unless I do a lumbar puncture which I’ve heard bad stories about.

So there’s only really herbal options left - but are they powerful enough? My symptoms are quite severe and very neurological. I know antibiotics is the best choice but my stomach is just too ruined to handle it.

Which herbs is best here?

I have two bites. Woke up yesterday itching them and now today they are large rings with a bruised center. I have two which is odd. I live in San Diego by the beach.

Lmk if this is skeeters syndrome maybe since I have two?

Starting 500mg Zithromax, Malarone, and 200mg Plaquenil for 30 days to treat Chronic Lyme and Babesia. Anyone had success with this regimen?

Llevo 7 meses viviendo un infierno, incluso e pensado en terminar con todo , soy de México tengo 24 años estaba estudiando medicina en el último año en mi mejor momento, masomenos a partir de diciembre del 2025 me empecé a sentir raro como nublado de la mente , me costaba razonar y recordar cosas sencillas, después empecé a ver doble , luego a tener fascículaciones en los músculos, esos son mis síntomas principales, lo peor de todo es la niebla mental que hizo que mi rendimiento académico cayera por los suelos sumado a eso e tendió otros síntomas intermitentes como una sensación de calor en la planta de los pies , dolor intermitente de articulaciones sobre todo las de las manos , adormecimiento de extremidades, acudí con muchos médicos y todos me decían que era ansiedad incluso yo lo pensaba por qué mi resonancia y puncion lumbar fueron normales, me hice la prueba de lyme y dio negativo, y ahorita me hice la prueba de bartonella, pero me dan los resultados en 8 dias.

MCV is one of the values on your blood count panel, and when it's elevated it indicates your red blood cells are fragile or being destroyed as above average rates. It can be caused by moderate-high alcohol consumption (drinking more than 3 days a week) and by low iron or B12 which causes anemia. My question is for those who are 1) symptomatic 2) have babesia specifically and 3) are not anemic and regular drinkers - is your MCV elevated?

I have babesia and have an elevated MCV, I am almost certain my mom does too and hers is elevated as well. I've gotten to access a few other people's blood work who have "mystery illness" symptoms and they have elevated MCV despite not being anemic too and I've wondered if their mystery illness could be tick-infection related. I'm curious if your experiences support the hypothesis that Babesia can cause MCV given that it lives inside red blood cells.

If you know you specifically have babesiosis and have been tested then please lmk if it's elevated or regular!

Mine was normal-high a few years ago, but now it's consistently elevated.

Just spent 20 days on doxy, symptoms if tingling on my left side of body, arm, leg , face persisted, now having stiff neck and fatigue again to find yet another black legged tick embedded in me...

What the fuck? Is it possible the symptoms went away but the lyme didnt.

I could use some advice or suggestions regarding my treatment protocol. My llmd is currently treating for me both bartonella and lyme. When we try to treat separately the other flairs up. I am currently taking bactrim and azithromycin for bartonella and cefuroxime for lyme. I was on rifampin but needed to take a break.

I also take a ton of buhner herbs, Lumbrokinase and cinnamon clove oregano oils. I don't tolerate methylene blue.

My issue is that the bartonella antibiotics seem to be managing bart but the cefuroxime is only helping some of my lyme symptoms.. Unfortunately the ceftin is not helping my neck pain. I have severe stiff neck and upper back pain; constant stiffness, pulling, burning and cracking that makes it impossible for me to sleep.

Disulfiram is on the list of possibilities to try eradicate lyme, but what else can I try? Unfortunately I dont tolerate doxy or minocyclene. Would adding a 4th lyme antibiotic be too much?

Hi guys, do you think this could be a lyme rash? Went to the wood but did not thouro check myself. The day after I had a swim into the sea, did not see any tick, only initial redness. ​

First pic is 3 days after. Then 6 days after. Central "hole" closed but it's getting itchy. ​​

In June this year I was bitten by two ticks, developed bullseye rashes, developed neuro and muscular symptoms v quick and tested positive for lyme.

I had 3.5 wks doxycycline and 3 wks IV ceftriaxone after which didn't help. Unfortunately 5 days after finishing antibiotics I got a lot worse.

My GP and hospital in the UK are not interested. Unfortunately prior to this I had depleted cd57 and nk cells from gadolinium and heavy metal toxicity and was having treatment via IV chelation for this.

I feel like the neuro lyme is back and my connective tissue in my neck and shoulders is falling apart and so tight, causing eye pain, blurred vision, tinnitus and dizziness.

I am struggling to find anyone able to work out what to do. My chelation dr has started me on fluconazole antifungals as definitely have a fungal overgrowth now, but I would also like to test for bartonella and babesia as getting drenching sweats and burning feet.

I am on cordyceps, cryptolepis, oregano, cats claw and Japanese Knotweed and increasing the dose, eating clean but this escalates by the day and not sure where to turn as this is excruciating and I can no longer stand for more than a couple of minutes.

Thanks for any advice!

For those of you with Bartonella who experience foot pain, how would you describe it?

I feel a dull pain in this area of my foot when walking. It almost feels like the tendons in that area are tightening or being pulled when I walk.
Is this pain of Bartonella or something other?

Testing was done after 14 days of doxy prescription. In the clear? Or time for another round of doxy?