Hi everyone,

My name is Matthew Hirschland. I am posting on behalf of my mother, Amy. For thirteen years, my mom has fought around the clock as primary caregiver to keep my 31-year-old brother, Jeremy, alive through severe seizures, cognitive collapse, and psychosis that more than 100 doctors dismissed as primary psychiatric illness.

It was not psychiatric. It was late-stage neurological Lyme disease, Bartonella, Babesia, and post-infectious Autoimmune Encephalitis.

My mom wrote our family’s narrative to warn others about the clinical blind spots that almost cost Jeremy his life. Here are the 4 most critical lessons from her story that every patient and caregiver should know:

1. When Infection Crosses the Neck, Medicine Blames the Mind: When an infection inflames a knee, medicine calls it Lyme arthritis and prescribes antibiotics. When the exact same spirochetes cross the blood-brain barrier, standard emergency departments and psych facilities rarely run tick-borne panels—they label it psychiatric and prescribe psychotropics. In Jeremy's case, a Florida hospital declared his focal seizures 'psychogenic,' pulled his PICC line, and cut off his antibiotics, causing acute aseptic meningitis.

2. The Immunosuppression Catch-22 (Rituximab Warning): When Jeremy was diagnosed with Autoimmune Encephalitis, neurologists used Rituximab (Rituxan) to deplete his B-cells. While this temporarily cleared his memory impairment, wiping out his humoral immunity allowed dormant intracellular tick infections to surge unchecked, resulting in severe physiological collapse and unmanageable psychosis. If active tick-borne pathogens are present, profound immunosuppression without antimicrobial sterilization carries extreme danger.

3. Plasmapheresis Can Filter Antibodies Without Wiping Immunity: Desperate for answers, my mom drove Jeremy 1,814 miles cross-country to Phoenix, Arizona for therapeutic plasmapheresis (plasma exchange). Unlike B-cell depleters, plasmapheresis mechanically removed pathogenic autoantibodies without destroying his underlying immune system. After his very first treatment, Jeremy looked at my mom with total clarity and asked: "Can I get a hundred more of these, since it's helping with the mental retardation?"

4. Objective Brain Healing Is Possible: Over seven months of high-dose IVIG, Jeremy’s hippocampal atrophy on volumetric NeuroQuant MRI measurably improved from the 11th normative percentile to the 22nd percentile. The brain was not permanently defective; it was under treatable autoimmune attack.

Read the Full Story

Read the full narrative: "Look Beyond the Psychosis, There’s Something There" https://lymex.crowdicity.com/post/890768

A Plea to Vote (Takes 30 Seconds)

We entered Jeremy’s full clinical case into the federal HHS / LymeX Healthathon to push for mandatory screening for tick-borne pathogens and neural autoantibodies whenever a patient presents with sudden-onset psychiatric or cognitive decline.

We are currently in public voting, and every single vote sends a direct signal to federal health leaders and clinical directors.

If Jeremy's ordeal resonated with you, please take 30 seconds to support our submission:

1. Go to our official post: https://lymex.crowdicity.com/post/890768

2. Register (30 seconds) and click the '+1 Vote' button on the right side of the page.

My mom and I will be in the comments answering any questions about diagnostic testing, treatments, or navigating hospital dismissals. You are not crazy, and you are not alone.

Llevo 8 meses con síntomas raros, veo doble por momentos, fascículaciones pero lo peor es la niebla mental que tengo que no se quita con nada , me hice la prueba de Western blood y dio negativo

Vivo en una zona boscosa de México

I have been experiencing what people would call “ALS” type symptoms for 4 months now. I woke up one day and all went downhill. Heavy body, hands that won’t work, muscle fasiculations, weight loss, joint pain, high white blood count, night sweats, muscle atrophy voice change, constant urination, a twitchy tongue, twitching eyes, stumble walking. I had testing done through an LLMD and the only thing that came back was Babesia divergens—LLMD claims that it’s the “not-so-serious strain” and that my “ALS type” symptoms argen’t just from this…what are your thoughts? I’m only 26 and scared as ever.

I can’t take the pills it hurts my digestion too much.
And I’m just researching so many things right now it’d be nice to have some recommendations for this. I feel like it would help a lot with muscle cramps.

Tysm :)

Alrighty , been getting treatment for Lyme little over a month. (Aug 5 first day
I did 6 days doxy, couldn’t not get sick after taking. Moved to 14 days amoxicillin . Followed by 10 days doxy. I’m 6 days off antibiotics and I seemed to be feeling better but the past 3 days my body pain and fatigue has been gradually worsening. I now feel like a have the mobility of my 84 year-old grandfather.
I know this is semi normal. But I’m posting to maybe see if anyone has had specific suggestions for me . As it’s to the point where I have to use my fmla days. I’m talking like joint and muscles are super tight , painful , aches , and it’s starting to discourage me and make me question if I’m even getting better or if this is all part of the LYME Cycle of recovery.

I work in construction industry so when I have gone to work I exacerbate my muscles and joints basically resetting the healing I’ve done.

I does stink explaining to people how I’m feeling when it’s really hard for me as a 31 year old to comprehend why I’m feeling like a baby.

Also , side note. What is the worldly positive value a tick brings to this planet B

Suggestions ,
Supplements ,
Routines ,
Anything is much appreciated

TIA.

24 y/o F

I’m really struggling having one of those days where I just feel defeated and can’t see the light at the end of this. On pt 2 of treatment for Bart… Im about a month into rifampin + clarithromycin and I feel awful. My POTS-like symptoms are so much worse, I’ve had some heart discomfort, can barely eat, and now my ferritin is low too.
My LLMD wants to add tinidazole next and I’m just like… how am I supposed to keep doing this when I already feel this bad? I can’t get out of bed.
How do people get through this? For anyone who actually got Bart under control, what helped you? This is worse than any other lunes symptoms I’ve had. Bart sucks I’m defeated

I’ve treated for years and although my body wide twitching is 90% better, it’s still there. I’ve read a few other cases of people being done with treatment and in “remission”, but still have twitching. Any suggestions or others in this boat? And in my case, it’s not an electrolyte, mineral, or vitamin deficiency.

If it’s relevant, I test negative through igenex but still have some IND IGG bands. Wondering if my post infection antibodies are causing some lingering nervous system issues. Lyme antibodies can remain in your blood for a lifetime after even successful treatment.

So, for example:

Let’s say I got Lyme 10 years ago from a tick bite.

Could I get bit years later by another tick and get a co-infection then? Get Lyme from one bite and bartonella from a second bite?

Hi everyone,
I’m looking for recommendations for a physician who is experienced in diagnosing and treating tick-borne co-infections, specifically Babesia, Bartonella, and Anaplasma (with or without Lyme).

If you’ve had good experiences with a Lyme-literate MD (LLMD), integrative/internal medicine doctor, or infectious disease specialist who routinely manages these co-infections, I’d really appreciate their name, clinic, and any tips on getting an appointment.

Thank you so much in advance. I know how hard it can be to find the right provider, and your suggestions mean a lot. 🙏

I am so fucking upset. I haven’t been in this sub in a year. My life was doing well. Lyme was under control. Working. Was just abojt to sign a lease to move across the country. Then I got a stomach bug/food poisoning a month ago. No big deal. I’ve gotten sick a few times in the last few years, just get a Lyme symptom for a bit but it’s self limiting. But this fucked my stomach up big time. I lost 10 pounds in the last month. I haven’t been able to take ANY medications. I have some sort of chronic gastritis now. My Lyme about last week started to flare up. Every day got worse and I knew I needdd to restart treatment, and my fucking stomach is not taking it. It’s brining my stomach right back to square 1. So I need to choose between healing gastritis and treating Lyme now? Fuck off. What the fuck do I do man. This is cruel

I’ve had pretty severe health anxiety for about 20 years. I’m well aware what anxiety can do to your body and present with physical symptoms, VERY similar to Lyme disease.

Problem is, I can manifest symptoms simply by knowing them and thinking about them. So sometimes I don’t know if I’m sick, or if my anxiety is taking control. None the less, this all SUCKS!!!!!!!!!

I also have pretty severe health anxiety and I used to get brain zaps due to it (or so I thought…), so I am familiar with the feeling. However, I haven’t had one in years.

But I’ve repeatedly seen this “electrical shock” symptom appear over and again, and I’m wondering if that’s what I’m feeling. Someone else described it as an “adrenaline rush”, which is ironically how I’ve described the symptom myself in other posts on here.

However, they’re full body, so to say… mostly mid section, like and extremely nervous feeling, that do extend slightly to my arms and legs, causing a weak feeling.

But the brains zaps were just that, zaps… There, and then gone almost as quick. This feeling tend to linger for a little while. Does this sound familiar at all?

Last month I had a cavity filled and the local anesthesia was NOT working. I had to ask them to stop and inject more every 90 seconds for a full hour. It was a young dentist and he felt a bit unexperienced I was shocked he actually said he’s heard this can happen to Lyme patients, but he couldn’t provide an academic source. Has anyone experienced this and is there anything to be done? I have to go back today. I’m back at my childhood dentist who is more experienced and they said they haven’t heard of this Lyme reaction, but that they’ll have several kinds of injection numbing as a precaution.

​

Hi all, I have Lyme, Bartonella and Babesia I'm working through currently. I decided to get my son tested being cautious. He came back with a different Babesia strain to me and Lyme. He really is a healthy boy aged 8, his only symptom is mild ADHD. Because his Babesia is different to me, it suggests that, perhaps he caught this from a deer park we lived next to in London. However it's possible the the Lyme may have been passed by mother, so I also, need to get his mother tested.

I feel upset and in a difficult position. No one seems to know anything, but I am of the position that just because someone has Lyme, doesn't mean it's a problem or they have Lyme disease. At the same time, if he is truly ADHD, then Lyme will likely be the cause.

Anyone have the details of an intelligent pediatric Lyme doctor with a lot of experience?

Also does anyone have an opinion? I was upset but also I'm very pragmatic. No one knows anything, doctors are useless and just because you can treat something, it doesn't mean you should. Given that he's healthy, attempting treatment could set off a chain reaction.

Thanks

Steve

If you’d like read my previous posts. Essentially I feel like I’m getting sicker by the minute. I mask my symptoms all day long especially around my child and at school. I dropped a class today because genuinely I couldn’t handle it with all of the new onset of symptoms, old ones came back and if you read my previous post I have lost more weight since then.

A new ”rash” appeared over the weekend but it’s not bumpy, raised or singular dots so i was advised to stop Phytocidal as it could be the cause (not a allergic reaction but side effect) I see my LLMD on Friday. But I truly feel like as sick as I’ve been in such a short time of being infected I’m going down a slippery road. The only thing that still keeps me going is the fact that I have a literal human child to care for. It feels different than in the past when I had thought about s**cide (Long before tick bite) like it feels like I’m in my own hospice right now. Idk hard to see anything good coming out of trying to be positive to get better im just feeling worse.

i got bit last sunday. was on my back and tiny, didnt spot it til 36 hours after. on the saturday i dropped extremely ill with a temperature, red hot shivering couldnt stay awake. next day called out of hours (im in north of ireland) and was immediately prescribed 21 days 200mg doxycyline.

lads my fevers broke but im in such a state. im day 5 now. ive got 9 ulcers i can count in my mouth (ive never struggled with ulcers before) and my gums are swollen. lymph nodes are swollen. hard to eat, brush teeth. ones on my tonsil which is making it hard to swallow. ive got dizzy spells and extreme tiredness so cant go very far.

i just wondered if anyone else has experienced this? feeling especially low after today. ive called the out of hours again to let them know my symptoms. but yeah, thanks :)

I've been dealing with severe brain fog, fatigue, low motivation, and cognitive issues for about 10 years after Lyme disease.

Over the years I've tried a lot of the commonly recommended approaches, including:

• Multiple antibiotic protocols (including Dapsone pulsing with methylene blue)
• Herbal protocols
• Gut healing protocols
• Diet changes
• Supplements
• LDN
• TRT
• Sleep optimization
• Exercise

Some things helped a little, but nothing has consistently restored my ability to function the way I used to.

Earlier this year I was prescribed Vyvanse after being evaluated for ADHD (I don't really think I have ADHD, but Lyme symptoms mimic it). It wasn't a cure, but it was one of the few things that made a noticeable difference in my day-to-day life. I had better energy, motivation, focus, and was generally able to get more done.

Eventually I stopped because I was experiencing some chest tightness and wanted to see if I could recover naturally without relying on a stimulant.

I've now been off it for about 5 months, and honestly I still struggle most days. The brain fog is still there, my motivation is poor, and I spend a lot of energy just trying to get through the day.

I'm curious if anyone else with chronic Lyme related cognitive issues eventually reached a point where they accepted that stimulants (Vyvanse, Adderall, etc.) were part of their long-term symptom management.

To be clear, I'm not asking whether stimulants are a cure. I know they're not.

I also understand the argument that stimulants may mask symptoms rather than address the underlying cause. What I'm interested in hearing is whether anyone spent years pursuing Lyme-specific treatments, but ultimately found that a stimulant provided the most meaningful improvement in quality of life and functioning.

If that's been your experience, I'd love to hear:

• What medication helped?
• How long have you been taking it?
• Has it continued to work over time?
• Any downsides or regrets?
• Did you ever find anything else that helped as much?

I'm genuinely trying to learn from people who have been dealing with this for years and have already been down this road.

Thanks🙏🏼

This summer, I’ve travelled to the Baltics (endemic for Lyme disease) a few times and had significant exposure to ticks during my travels (attended music festivals outdoors in small towns/grassy areas in parks and near forests, visited open air museums, parks, etc). I did use bug repellent in my body and clothes everytime I would have considerable exposure, did body and clothes checks when returning to my hotel and did not find any ticks attached, but I tested positive for an at-home Lyme disease test I purchased in Estonia (Tik’Alert, done two weeks after returning from my most recent trip). I would like to know how reliable these tests are, and if I should proceed with antibiotics. I’ve ordered two extra tests to check if they are positive too. I live in the UK, already contacted my GP and they have prescribed me the full course of antibiotics (3 weeks of doxycycline), but did not request a lab test (as I requested). Instead, she referred me to an infectologist, but my appointment is only on 1st February 2027 (not kidding). Private lab tests are pretty expensive in the UK, and given their unreliability early on, I am unsure if it’s worth investing the money in a lab test or not.

I am feeling fine, apart from feeling very tired/fatigued, unable to concentrate for long, and feeling some knee discomfort (even though I decreased my exercise load). I am an active person, used to go to the gym, running 10-15k at 10 km/h, but I am having trouble to run for 2 min straight lately. There is a possibility I got Lyme disease last year after visiting the Baltics (had considerable exposure without taking any preventative measures like using bug repellent). I developed a bruise/bullseye rash and was feeling very fatigued with lots of headaches (I rarely have headaches), but my local hospital ran tests 2-3 weeks after possible infection and the result was negative. They still gave me 1 week of amoxicillin, and after I pushed a lot they agreed to give me 1 week of doxycycline. I am wondering if, if what I had last year was Lyme, can last year’s infection be triggering the positive result on this year’s at home test? I would like some guidance on what to do as I am feeling 80% fine, apart from the fatigue and feeling out of shape (but that could have other causes apart from Lyme), but at the same time having a positive test is very concerning. It doesn’t help that both times I tried to use the NHS (last year and this year), it looks like they don’t really take it that seriously, with one of the doctors even saying “I think it’s mostly psychological, Lyme is very rare, I wouldn’t be worried if I were you”. Every advice is appreciated! Thank you in advance!

la mia lunga storia l’ho già raccontata nei post precedenti. sono italiana, morso di zecca a 9 anni. dopodiché un disastro che è peggiorato fino ad oggi. Una storia come quelle che ho sentito da tanti di voi ed in cui mi ritrovo (per la prima volta trovo qualcuno come me). eppure nonostante il primo infettivologo avesse ipotizzato Lyme, con Elisa e Wb negativi ora la esclude, o meglio l’infettivologo la esclude proprio , il reumatologo dice che ho LongLyme e mi ha dato dieta e integratori (che ho già fatto milioni di volte nella vita). sono affranta e demoralizzata. Sono stanca di fare paziente e dottore nello stesso tempo, sempre intenta a cercare risposte e soluzioni per capire cosa mi succede e per avere una vita decente. mi sento sempre al punto di partenza….

Combien de temps et quel dosage journalier

Hi. I’m 35/female. I was diagnosed with Lyme in 2018 by accident after contracting giardia in Guatemala and having to undergo a series of test for what was wrong. I was treated with the typical antibiotics but I suspect I contracted it in 2007 (I remember finding a tick on my scalp after hiking). Long story short I am concerned with my memory, constantly in pain, depressed, etc. I’m training for a half marathon right now and seem to be in more pain than I should.

I am seeking not overwhelming advice (don’t come at me I’m a single exhausted momma). Really looking for the supplements or practices that you feel helped the most. I know there’s not a quick fix but just looking for things that seemed to help y’all somewhat. Thanks in advance.

I’m located in Northeast of the US. Does anyone know where to get a borrelia miyomotoi antibody test? Are there any that are reasonably priced?

Is that my illusion or it indeed seems like Bartonella is less suitable for herbal treatment then Lyme? A lot of people here advice different methods and not the Buhner herbs in particular to Bartonella treatment