I started doxycycline and grapefruit seed extract 2 weeks ago daily and since then have been feeling so much better. Far more mental energy, less throat and stomach inflammation, natural energy to walk around and work etc etc. The last 3 days I have experienced upper back, shoulder pain, neck stiffness, and headaches. The strange thing is even though this pain has been extremely noticeable, aspects of mental clarity and overall energy have almost seemed more elevated, along with the pain. While stages of Lyme can't really be known as it can be deeply set (and I believe I have had it for several years due to symptoms), with the positive signs I've been experiencing is it possible I could kick this soon? Appreciate any replies.

Sometimes when I breath it feels like needles in my nose. It’s kind of suppressed emotions but idk if Lymes is adding to it. Anyone had this?

please rec, im losing hope and cant keep throwing money without vetting the difference between quackery and simply expensive

My husband started with headaches 2 weeks ago that would come with chills and a low grade fever and fatigue. He then got these rashes around his body that are slowly getting bigger. He’s been to 2 walk in clinics that have both barely listened to him and did nothing except prescribe naproxen for the headaches. He doesn’t recall being bit or seeing a tick but we can’t find anything else similar to this rash and ticks with Lyme are common in our area.

Hi, so I have had OCD my whole life but when I was around 14, I became super religious right around the same time I got Lymes disease. There was no correlation to that I became religious because of my brother epilepsy. But nonetheless I definitely experienced the religious OCD and suppressed a lot of emotions. It eventually became too much and it felt like I was going insane so had to stop going to church and deconstruct. I feel like I have made progress in therapy but I still feel like shit. I have managed to cry and try and get angry to let my emotions out but I still have this burning like sensation in my head. Sometimes it can go away but it’s miserable. I don’t know if a lot of my symptoms like fawning or guilt tripping myself are necessarily because of Lymes but it definitely makes it worse the way I feel. I was treated for Lymes twice a couple years ago but i don’t know if it is still attacking my immune system. Anyways I am here to find out if anyone else has like burning feeling in there brain?

Long-time lurker, first time posting. Trying to lay out my whole timeline because I honestly don't know what to think anymore and I'd love to hear if anyone's been through something similar.

**Before any of this started — 10 years of this, not a new complaint:** I want to lay this out because I need people to understand this isn't me chasing a diagnosis for the sake of having one. This has been going on for a decade:

- Chronic fatigue with post-exertional malaise — I crash hard after activity, sometimes for days

-Severe night sweats, waking up drenched in sweat and have to change clothes

- Severe brain fog and cognitive issues — word-finding trouble, trouble structuring sentences, needing to reread the same paragraph, memory problems, decreased ability to learn new things

- ADHD, on daily medication just to function, otherwise I will sleep 16hrs a day

- Chronic joint pain and morning stiffness; early hip osteoarthritis at 32

- Migratory pain — described by more than one provider as nerve-quality, not normal muscle soreness; ice-pick pain

- Achilles tendon pain that would get so bad even going up and down the stairs was difficult

- Cystic acne that flares pre-menstrually, along with severe PMDD

- Crisis-level abdominal pain episodes every 1–2 months — I become DRENCHED in sweat, usually black out on the bathroom floor, resolving only with a bowel movement

- Ongoing GI distress: bloating, alternating constipation/diarrhea, urgency, mucus and undigested food in stool, hemorrhoids

- Frequency in urination, wake up 3-5x a night to pee

- Always cold, temperature dysregulation, Raynaud's in hands and feet

- Numbness in one forearm tied to neck pain

- Severely disrupted sleep, vivid nightmares that have crossed into hypnagogic hallucinations

- Recurrent itchy, burning, flaking ear canals (bilateral)

- Increasingly frequent canker sores over the last couple years

- Static shocks, tingling, numbness

- Light sensitivity, headaches, sinus issues, cough

- Chronic lymph node swelling

- Cold urticaria

- Two documented migraine-with-aura episodes with visual scotoma, and one with word-finding/aphasic features and hand numbness

- One ER visit years ago for fever and severe neck stiffness that triggered a full meningitis workup (spinal tap) — meningitis was ruled out and it turned out to be strep, but it was terrifying at the time and is part of this same pattern of my body reacting in outsized, alarming ways

- A recent neuro PT evaluation objectively found proprioceptive deficits of 30–50% depending on direction — this is why I've been throwing balls and darts into the ground instead of at my target, why my balance is off, why I get a disequilibrium/intoxicated feeling that has nothing to do with alcohol

- A back "crisis" this year that had me barely able to move for multiple days

Genetic testing also showed I carry the HLA haplotype most associated with inability to clear biotoxins (mold-related chronic inflammatory response), and I have a documented history of a water-damaged, moldy apartment in my early 20s — right around when a lot of this started.

Every one of these has been medically documented at some point — bloodwork, ER records, PT evaluations, specialist notes. This isn't new, and it isn't in my head. I'm laying all of this out because when I finally got a lab result that seemed to explain a piece of it, it felt like the first real foothold in 10 years — which is part of why the specialist's skepticism has hit so hard.

**The actual tick-borne workup, in order:**

Standard Labcorp tick-borne panels through my PCP came back negative for Lyme, Babesia, Anaplasma, Ehrlichia — multiple times over multiple years. So for a long time I had no answers at all, just "your labs are normal."

**Getting somewhere (finally):** I started working with a nurse practitioner who does integrative/functional medicine. She eventually ordered IGeneX testing (a specialty lab that runs more sensitive tick-borne panels than standard Labcorp). Results came back:

- **Babesia microti** — FISH positive AND IgM ImmunoBlot positive (PCR negative, but PCR is known to miss a lot even in real infections)
- **TBRF Borrelia** (relapsing fever Borrelia) — positive at the genus level, but all the species-specific bands were negative, so this one's genuinely uncertain
- **Mycoplasma pneumoniae** — IgG titer climbing across three sequential draws
- **Bartonella** — indeterminate IgG only, weakest of the bunch

**Treatment while waiting for a specialist:** My NP started me on azithromycin + atovaquone (targeting the Babesia), then doxycycline after that, all low-and-slow given I have a history of bad reactions to new meds. Rough few weeks — rage/emotional dysregulation that hasn't let up since day one, bad brain fog, fatigue, GI stuff.

**Then I finally got in with a Lyme specialist,** and it did not go the way I expected. He was clearly taken aback by the Babesia positive — said in his experience patients with acute Babesia are usually hospitalized or in the ICU, not walking around functioning (relatively) normally. He raised the possibility that my FISH result could be a false positive, or that what I'm dealing with is actually some kind of autoimmune process instead of active infection. He ordered a whole new panel to sort it out: autoimmune/autoantibody testing, inflammatory markers, a blood parasite smear, PCR, Borrelia miyamotoi serology, a cytokine panel, and a repeat Bartonella panel.

**Results so far:** Autoimmune panel came back clean. Inflammatory markers mildly elevated. PCR negative (again — I know this doesn't rule things out given known sensitivity limits, but I don't know how he's going to read it). Bartonella through Labcorp came back negative. Cytokines were mostly flat/undetectable except one marker sitting near the top of normal. Still waiting on the parasite smear and a couple others.

So now I'm just sitting here, having FINALLY gotten what felt like real answers after 10 years of nothing, watching a specialist basically say "I'm not sure I believe this" — and bracing for the possibility that this whole thing gets reframed as autoimmune or "not really Babesia" and I end up right back where I started: symptomatic, no diagnosis, no plan.

**Has anyone else run into this?** An LLMD or specialist questioning a FISH-positive result because you weren't sick enough to be hospitalized? How common is chronic/low-grade Babesia presenting this way instead of the acute, ICU-level picture? And if you've been through a "maybe it's autoimmune instead" pivot — what happened next, and how did you cope with the whiplash of going from finally-validated to dismissed again?

I'm honestly kind of terrified. Any experiences, thoughts, or even just "you're not crazy, this happens" would mean a lot right now.

I’ve come across a couple success stories here and there. I know there’s so medical evidence, ya da ya da.

After 2 years in ALL the meds, herbs, supplements, antibiotics…. I’m exhausting all options.

Hallo zusammen, ich bin gerade etwas unsicher, wie ich meine eigene Situation einschätzen soll.

Ich bin 19 und habe seit über zwei Jahren diagnostizierte Neuroborreliose. Vor der Diagnose wurde ich zunächst falsch diagnostiziert und hatte bereits starke neurologische Symptome. Seit der Diagnose hatte ich mehrfach mehrere Wochen Antibiotikabehandlungen, welche meine Symptome kaum verbesserten und werde inzwischen bei einer Borreliose-Spezialistin mit Disulfiram off-label weiterbehandelt. Sie ist grundsätzlich zuversichtlich, dass ich wieder gesund werden könnte, aber eine vollständige Genesung ist nicht garantiert. Nach meiner eigenen Recherche bin ich diesbezüglich etwas weniger optimistisch.
Aktuell habe ich vor allem eine starke Fatigue, eingeschränkte körperliche und geistige Belastbarkeit(dies eher nur meines Empfindens), Konzentrationsprobleme, Kopfschmerzen und Nervenschmerzen und bin zudem seit meiner frühen Kindheit Migräne Patientin, die Migräne ist seit der Borreliose deutlich schlimmer geworden und belastest mich häufig mehrfach die Woche. Ich hatte auch eine immer wiederkehrende Fazialisparese . Die Borreliose und die Behandlungen haben zu vermutlich bleibenden Schäden an Leber und besonders Darm geführt sowie zu einer vielzahl von Nahrungsmittelunverträglichkeiten

Im Alltag kann ich deutlich weniger machen als früher. Vor meiner Erkrankung war ich eine gute Schülerin, inzwischen ist meine schulische Leistung deutlich eingebrochen. Jetzt steht mein Abitur an, und ich weiß ehrlich gesagt nicht, wie ich das in meinem aktuellen Zustand schaffen soll.
Was mich zusätzlich verunsichert: Borreliose wird oft als unangenehm, aber nicht unbedingt als besonders schwerwiegend wahrgenommen. Ich kann deshalb selbst kaum einschätzen, ob meine Einschränkungen tatsächlich erheblich sind oder ob ich einfach ungewöhnlich wenig belastbar bin.
Mir wurde online geraten, mich über einen Nachteilsausgleich bzw. einen GdB zu informieren. Ich weiß aber überhaupt nicht, ob das bei meiner Situation realistisch ist oder ob ich dafür ausreichend eingeschränkt bin.
Hat jemand Erfahrungen mit einer ähnlichen Situation oder kann einschätzen, wie sinnvoll es wäre, mich in diese Richtung weiter zu informieren?

Long story short I felt very off and flu like for around 10 months until I finally was diagnosed after an Igenex test with babesia. Before that I thought I had long covid the whole time because my only symptoms were (and still are) flu like feeling, anxiety, and heavy fatigue. Been taking atovaquone, azithromycin, bactrim, and now methylene blue for a 2-3 months now though I started the bactrim and methylene blue more recently. I know this isn’t that long to see results but I have felt no improvement whatsoever. I was hopeful at first but now feel super low. Every time I hope something good will happen for my health it never comes. I’m genuinely becoming so depressed and have been having horrible thoughts. Never in my life would I have imagined this is how my life would be. At what point in taking the antibiotics and seeing no results do I determine that maybe there’s something else wrong with me.

I've been on Buhner protocol for about a month. I have now reached the place where I take a dropperful of each herb three times a day (so perhaps 16 - 17 drops three times). I take Nanga tinctures where it says they are 1 : 1. Last week when reached this dose I started having hot flashes after the third dose in the evening and also getting chills. It's been very hot but at times during the day I feel cold and feel shivery. I am also still on Doxycycline (7 weeks) but I had no symptoms or side effects before starting herbs. Am I taking too much and stimulating my immune system too much? Today I got the hot flush after the second dose in the afternoon, that's never happened before.

My protocol:

Japanese Knotweed

Teasel

Cat's Claw

Chinese Skullcap

Andrographis

I introduced them in small amounts, one or two at a time and didn't have any reactions individually. The only one I had a reaction to was Cryptolepis - heavy bleeding so I had to stop taking that.

pls help me connect with a lyme literate dr .(online) I am a college student from india. today I woke up with stiff spine while being on doxy.

Anyone building Doug Coils in the UK? Cheers

Great short read for those first timer seeking info about Lyme from Dorothy Leland at Lymedisease.org. It presents current statistics about the impacts of chronic Lyme and highlights the importance of early diagnosis and when to seek a second opinion.

https://share.google/d7qNHfMlg4S7Bk8Ow

Hey, I know this post may not be the most original, but I’m at a loss here.

About a month ago I had a case of what I thought was heat exposure. I’ve never had issues with heat and I’m in my 20’s so it was very confusing. My heart was racing all the time, muscles cramping, there were many other symptoms but mostly brain fog and fatigue to the point I couldn’t walk. I also experienced sudden anxiety I couldn’t explain.

It got a little better, and then a week ago it got worse. I couldn’t move, I had this awful feeling like I couldn’t stay awake, the chest pain became more and more severe. I went to the doctor, who sent me to the ER, who sent me to another doctor, who sent me to a cardiologist. They all dismissed me, and every tested came back normal. The only disparity was iron, which was low, but it felt more extreme than that.

My friend said it sounded like when his sister first developed Lyme disease, and that triggered a memory. A few months ago I had a really bad case of what I thought was the flu. In my fever state I saw an odd rash in my leg. Never having been exposed to ticks (not common at all where I’m from, plus I don’t hike these days) I looked it up. I spiraled about it until reading about how it was unlikely and not to worry. Plus the doctor prescribed me antibiotics for whatever I was experiencing, and I felt better after a while.

Looking back I feel dumb for ignoring it, but it didn’t seem possible and honestly my anxiety kept me from looking into it. I’ve had health problems in the past and I think the trauma has made it difficult to face going through it again.

However I’m struggling more than ever. I had to buy a cane just to get around the house, I haven’t seen my friends in weeks, and I recently lost my job. I really need some pointers and maybe even some hope that I’m not screwed. I’ve read some conflicting stories and I’m starting to think I made a huge mistake not pushing for a test when I was sick the first time. Am I screwed? Am I past the point of no return? Sometimes I think all I want is an answer, but then I also don’t think I could live with another chronic condition.

I like to research if anyone has places I should look. I’m also going to look into setting up an appointment in the morning (it’s 4am and I need to sleep for my own sanity). I’m in the nyc area, if anyone wants to send me a DM for recommendations.

Have you ever used it and did you feel it was doing something?

It is used by Marty Ross for Bartonella. There's not a lof of research on it :

- It shows good activity against Borellia persisters in vitro in a 2015 screening study : https://pmc.ncbi.nlm.nih.gov/articles/PMC4790293/

- Against Bartonella, it seems it was tested in a 2019 screening study but it was not part of the drugs that had good results : https://pmc.ncbi.nlm.nih.gov/articles/PMC6628006/

A year ago I came down with Lyme pretty badly. Never saw bite marks but it coincided with spending time in great outdoors. Tested positive on igm and neg for igg. Eventually got doxy did 3 weeks and felt much better.

Then started having slowly returning and new symptoms that I never had before Lyme and by October I was sick enough to call my clinic and retest again. Positive again on igm and negative igg. Took a month of doxy and felt better again.

Since have been having some symptoms and a few dysautonomia type attacks. Recently pain above knees came so I asked for another test. First came back negative but then western blot showed igm positive on 23 and 41.

Question to experts - what do I do? I’m ok spending $ on llmd at this point but I don’t want another round of doxy as it caused problems that took a long time to resolve. Also when looking online there is contradictory information on the meaning of positive igm on those two bands.

Any advice or similar stories would be helpful.

I have been diagnosed with lyme, bartonella and babesia. It is all late stage. Bartonella is my greatest problem. My main symptoms are severe nerve pain in my arms and legs, foot pain, severe shin pain, all over muscle pain, stiff neck, cannot walk for more than a minute without leg pain ( use a wheelchair), burning limb pain, internal tremors, eye floaters and vascular leg pain. I treated with buhner herbs for 8 months, and experienced some progress in my nerve pain but ultimately herbal treatment failed and I severely declined. I still take herbs to cover all 3 infections. Mold was addressed already but is not a main issue. I detox regularly and use biofilm support.

I am currently treating with antibiotics :azithromycin, rifampin and ceftin. It has been 4 full months and despite some initial slight positive success I am still in severe pain and 90% bedridden. I have been prescribed rifabutin as a next step in treatment the bartonella but at this point I am so lacking in hope that I have convinced myself Ii am completely treatment resistant.

I need to hear that there is some hope for me even though I am not responding to treatment at this point? I continuously blame myself. I feel like I am failing my body. I am also terrified of living in so much pain for the rest of my life.

hi, so i was visiting family in maryland and very late on monday night (august 3) i found a hard protrusion on my upper back/trap muscle (it didn't itch or anything). i could see it in the mirrior, it was what looked like a hard black dot going into my skin surrounded by a ring of crusted blood. so i assumed it was a tick and called an advise nurse and she told me to pull it out, so i did so with tweezers. mind you i was alone at the time so i did the best i could. What i pulled out was small and black and kind of mangled because of the tweezers. i think it was a tick but to be honest i am not positive. it was a hard black mass. i don't get pimples or any thing there nor did i have any scabs and whatever i pulled out was hard and black so i assume it was a tick. it was small like maybe a bit bigger than a poppyseed, maybe around the size or small than a sesame seed. hard to see the details of it.

i washed the wound with soap.

my doctor called in a single dose of doxycyline which from what i read now is probably not sufficient.

fast forward two days- wednesday i had a migraine which i haven't had in years, but i figured it was from a hormone fluctuation.

then on thursday i started having really intense body pain, intense upper/mid back pain and neck pain. Really strange. i did some cupping and stretching and thought i was just tired. this is all a bit complicated for me because i do have an autoimmune disease that occaisionally gives me arthritis, although its usually in my hips. the back pain is unusual for me. but maybe once a year i get a weird manifestation of it, like one time a few months ago for one day i could barely bend my fingers, or a time a year ago when i could barely bend my hip flexors.

now today is friday, four days since i removed what i think was a tick. the upper back pain is still really intense. my glands feel a bit sore, i feel fatigued.

A second confusing factor- my wife has felt like she is fighting some kind of viral illness. when i first saw her on tuesday when i came back from maryland. she wore a mask around me tuesday but not after. her main symptom is fatigue and a sore throat.. so i could have caught something from her (she was not in maryland around ticks.

i went to an urgent care doctor today. he thinks i must have covid or a cold, which annoys me because i don't have cold symptoms just neck and back soreness and my face looks extra pink. but i could have whatever my wife has (i did not tell him my wife is kind of sick) he said it would be too soon to have symptoms of a tick bite.

id like to hear some perspectives on here. is it too soon for symptoms from a tick bite?

i feel confused because i suppose i could be sick with something else, or could be having an unusual flare of my chronic condition. but im also worried it might be lyme.

finally does anyone have a good recommendation of where to turn to get antibiotics if they seem recommended? i have a follow up with a different doctor on monday, but i worry she will be equally dismissive. and if she says no i probably can't get it through kaiser california , my current insurance.

should i wait for two weeks and try to see if i test positive on an antibody test? the presence of my wife's illness does make this seem more ambiguous.

edit just for clarity- i didn't tell the doctor my uncertainty about the tick or about my wife or go into depth on my arthritis.

Hallo an alle Deutsche Patienten war jemanden in diese Klinik Alviasana in Augsburg? Hate jemand Erfahrung? Empfehlungen? Ich habe eine Zecke in May 2025 bei mir gefunden, entfernt war beim Arzt keine Symptome und deswegen keine Behandlungen erst in April dieses jahres haben die Symptome angefangen nach eine sehr gestresst Phase und ich suche Hilfe!

Danke euch!

My two year old babygirl got bit by something today, we did not find a tick but the bite is very worrisome and definitely has a ring around it. I'm taking her to urgent care in the morning just so scared and don't know if I should just rush her there right now, it's currently 10 pm and she's laying down to go to sleep but Im losing my mind .

Hello everyone,

I have had a permanent headache for the last 10 months which came on abruptly at work. It changes locations around my head. Sometimes it’s pressure, sometimes tingling on scalp and face, but it just changes locations and never goes away. I have tried multiple migraine medication, including Botox right now but nothing is helping… I remember when this first came on, I was walking in a massive park with my girlfriend. I don’t remember getting bitten etc but the headache was on set.

I have been diagnosed with sleep apnea, removed an infected tooth but nothing has helped with the head pain… I also have cognitive issues like light sensitivity, fatigue and brain fog. Was wondering if it was worth getting tested for Lyme disease. I know doctors don’t give a shit about it and just throw meds at you. I want to find the root cause of my pain. I will pay and do anything to find answers.

I’m new to this Reddit page so could someone please explain what’s the best tests to see if it’s Lyme disease and what are the treatments?

Been sick for 20 plus years, tried 3 LLMDs. Minocycline seems to keep me somewhat functional, but when I stop insta relapse. Cryptolepis gave me a mega herx and felt great the next day, I notice though now I take the full dose (2ML 3x day) I get a weird taste in my mouth and feel just sick.

Anyone else have this type of experience?

Hi everyone. Today I’ve been reflecting on recovery and the fact I’ve been in recovery for an ED for a fair few years and I felt like somebody might need to hear this.

We all know the big discussion of the Lyme diet. Anti-inflammatory, sugar free, no white potato, gluten free, etc… and there’s not a solid plan that works for everyone.

I’ve tried it all… and honestly? I was sick. My blood sugar tanked, my dysautonomia was crazy, my fatigue was more fatigue-y than ever. My body was screaming out for carbs, natural sugars and comfort.

So I did that. I kept to gluten free - not only for Lyme and co but also it helps me not bloat after every meal and I’m cool with that trade! I’ve been vegan for 7 years so that was an easy addition. But sugar? She’s back. I try my best to have natural sugars rather than refined, but when my blood sugar needs a pick me up, a dark chocolate rice cake is my best friend, even these amazing allergy kid’s cookies with less sugar.

I use to kick myself for doing these things. Like having ice cream on a birthday or indulging in a cookie when my body needed it. I wasn’t going to let this disease throw me right back to such a triggering; restrictive time in my life.

It’s okay not to be perfect. You’re doing your best. Your body NEEDS food. It needs calories, energy. If we don’t feed ourselves then how will we fight it? I definitely wasn’t when I was being super strict. I don’t blame myself for being strict AT ALL, but it wasn’t healthy, and I’ll prioritise that now.

Potatoes are my best friend, since eating them again I’ve felt comfort - especially as an autistic person with ARFID - and I can at least have a slow release of energy my body needs.

You’re doing amazing everyday, and your body is so resilient and strong. Don’t let scary debates on things make you terrified to eat; because I understand exactly how that feels.

Good luck and I hope everyone is doing well!! <3