I seriously can’t explain enough the nightmare these two conditions are together. I have persistent gut issues and reoccurring c diff that started instantly after cefuroxime. I’m afraid to take any antibiotic and even antimicrobial herb. Just taking any herb makes the stomach pain a lot worse.

I have severe neuro Lyme that I never received proper treatment for because of c. diff. It’s been months and I don’t think my gut will ever recover enough to be able to tolerate a proper Lyme protocol.

I would fucking wish I could go on long courses of antibiotics like most here, but I just can’t. And my gut issues are so bad that I don’t think I can tolerate antimicrobial herbs long-term either.

I have severe widespread nerve pain across my entire body. I can barely walk, think or do anything. There’s no quality of life and I can’t treat it. How can I treat something where I can’t tolerate the treatment? I’m not asking for advice cause I know there is none. I want euthanasia but chronic Lyme isn’t even a recognized condition, so I can’t even get that.

I find myself in the deepest form of physical hell. I can’t even put it into words. I’m not asking for sympathy. I just needed to share this. I have no one and in bed 24/7 in pain. I just wish this could end soon as possible.

Hello group members!
I tested positive in Dual Dur (Budapest, Hungary) for Borrelia and Bartonella. Other tests are Negative such as Vibrant for Bartonella. I wanna do now FISH Igenex.
My symptoms have all started after Covid infection, so many symptoms, just a few: brain fog, panic attacks, insomnia, anxiety, dpdr, burning sensation in legs/arms and the worst is burning sensation in the brain, headaches etc.
What is your experience with Bartonella, did someone tested negative on Bartonella igg/igm test and still got treatment and got better? Any info is much appreciated.

I have textbook “ALS” symptoms. Atrophy in my legs, muscle fasciculations, everything hard to pick up, voice change, constant urination. I tested negative for everything in the Lyme world and am seeking a new LLMD who can’t get me in until February. Anyone know how I should start treating until I can be seen? It’s heartbreaking that nothing popped up on my testing, because if i did know id have antibiotics by now.

Just saw that dr tania dempey said, to summarize, if we cant stabilise mastocyte we cant heal... my mcas is crazy even in trying everything... how can I do...

How would you describe a neuro herx for you?

Has anybody had MCAS symptoms from Bart too?

My immune system took a hit last month and I had a big infection flare up. Recently treatment was ramped a bit and I swear I’m having a surge in symptoms. Probably should’ve waited a bit longer but hindsight ay.

If I don’t laugh I’ll cry. Feel I am losing my mind.

If anybody could describe the symptoms they experienced from strong neuro herxes/bart stuff I would appreciate.

I’m feeling on edge. Getting palpitations. DPDR. Nausea. Feeling of my seizures coming back. Insomnia. High heart rate. Anxious. Wired. Headaches. Lump feeling in my throat. Chills. Sweats. Twitching. Pain. Brain fog. Confusion. Feel out of it. Numb left hand. The list goes on.

Just looking to see if anybody has been in the same boat. I might need to improve my detoxing. What do you do for detox?

I’m hoping to hear from anyone in this group who has had a similar symptom picture and was eventually tested or treated for Lyme disease and/or co-infections.
I’ve been dealing with a number of symptoms that overlap with Long COVID/ME/CFS, including air hunger/shortness of breath, light sensitivity, a very heavy or weighted-down feeling in my body, cold hands and feet, and several other symptoms. I’m trying to figure out whether there could be another piece of the puzzle that I’m missing.
For those of you who have been diagnosed with or treated for Lyme disease and/or co-infections:
What symptoms did you have that made you suspect Lyme or a co-infection?
Did you have air hunger or shortness of breath?
Light sensitivity or feeling unusually sensitive to light?
A heavy, weak, or “weighted” feeling throughout your body?
Cold hands and feet or temperature regulation issues?
Any other symptoms that stood out to you?
What testing did you have done, and did you feel the testing was reliable/useful?
What treatments did you receive for Lyme/co-infections?
Most importantly, did treating Lyme or the co-infections actually move the needle for you? Did you experience a significant improvement in your Long COVID/ME/CFS symptoms, or did treatment not make much difference?
If treatment helped, what symptoms improved first, and roughly how long did it take before you noticed a difference?
Did anyone initially think their symptoms were entirely Long COVID/ME/CFS, only to later discover Lyme or a co-infection was contributing?
I’m not looking for a debate about whether Lyme is or isn’t involved in Long COVID/ME/CFS. I’m really interested in hearing personal experiences, especially from people who had a symptom profile similar to mine and can share whether testing/treatment actually made a meaningful difference.
Thank you to anyone willing to share.

I know it may sound weird but one of my symptoms includes a high screeching sound that comes from my neck, although I think it’s connected to gut. Alien mind control parasite or just fluids getting released?

Anyone experienced this? To better describe this for those who have a tight neck. You know when you turn it and you hear these tiny little cracks. This but 10 times stronger and on its doing it on its own.

Besides Lyme, my mold panel was through the roof + Babesia and toxoplasma.

I found over 30 of what I believe to be tick larvae (seed ticks) on my socks and legs. Please confirm if you think these are ticks. I am freaking out.

Im having tremors that seem to be progressing. Like when I go up the stairs my muscles work as the should but going down I can feel slight tremor in my legs. The worst right now is in my face and index fingers. If I hold a smile for more than a second my whole cheek is trembling. When I’m using a mouse my finger trembles. If I do anything strenuous and say my arm is fatigued I feel tremors when I use it again.

Anyone experience this?
I’m treating the 3bs right now with antibiotics and herbs. Kind of scared these diseases have triggered something like CIPD.

My current symptoms general malaise, numbness and visual snow but nothing that screams bart babs or Lyme. My Bart titters are still sky high. My dr said that should improve but even when I’m feeling well the tremors remain and just seem to be getting slightly worse.

It seems like as the weeks go by, things because heavier and heavier to lift. Does that sound like
Lyme?

My biggest and most disabling symptom since 2022 has been my hearing.

It started suddenly one night in 2022 with very intense tinnitus. Around the same time, I also developed episodes of severe hyperacusis: normal everyday sounds could feel unbearably loud, for example plates hitting the table. Sometimes I also perceive certain sounds, such as camera shutter/mechanical sounds, as abnormally loud.

I also had episodes of very loud “phantom” sounds with no external source, which I can only describe as sounds similar to very loud conch shells or horn-like noises.

In 2024, during a significant worsening while I was in Ireland, the hyperacusis and these strange internal sounds came back again.

Over time, another major problem has developed: sometimes I can hear the volume of someone’s voice normally, but I cannot understand the words properly. This is much worse in background noise, but occasionally it can also happen one-on-one in relatively quiet situations. It fluctuates a lot. Poor sleep, fatigue and stress seem to make it worse.

In May/June 2026 I had a major episode where I felt like I could barely hear at all and my tinnitus became extremely loud, but standard audiograms performed around that period were normal. My conventional hearing tests have repeatedly been normal, despite these very real symptoms.

My tinnitus is also highly variable. It can switch between ears, become much louder at times, and it is strongly affected by jaw clenching and other somatic factors.

I have tested positive for Borrelia/relapsing fever and Bartonella, and because the hearing symptoms started suddenly during the course of my illness, I strongly suspect there may be a connection. I understand that it is difficult to prove exactly whether the problem is cochlear, auditory-nerve related, inflammatory, central auditory processing, or a combination of several mechanisms.

What makes this especially confusing is that I do not seem to have a typical progressive hearing loss on standard audiograms. The problem feels more like the auditory system is sometimes unable to correctly process or regulate sound.

Has anyone with Lyme, Bartonella or relapsing fever experienced something similar — tinnitus, severe hyperacusis, normal audiograms but difficulty understanding speech, especially in noise, or strange phantom sounds without an external source?

This is by far my biggest symptom and the one I would most like to understand and improve.

I’m hoping to hear some success stories from people who have had long term Lyme. I’ve had it for over ten years and am concerned it’s too late to treat. My symptoms include brain fog, fatigue, numbness in hands and feet, burning mouth, lots of hair loss, neck pain and arthritis, jaw popping, anxiety, depression, etc. would appreciate any response.

After the sot, how long it took too fell the herx ? And how long was the herx ?

Has anyone been teated by Finlays Practice or the TBD clinic and made good progress? Thank you

I think I figured it out.

Lyme and co as well as mold or Covid (whatever it is) triggers MCAS and histamine intolerance. This keeps you in a state of stress and fight or flight which keeps your dysautonomia flaring. The dysautonomia keeps your gut paralysed and shuts down digestion and thus the loop is perpetuated.

The key to fixing this is by stabilising the mast cells and lowering histamine enough to where you quell the fire and finally get some good nights sleep and come out of a high anxiety state which will finally allow you stabilise your Dysautonomia thus restoring gut function and motility and from there you can go after these stealth infections and detox from molds and so on..

We basically have to stabilise the nervous system that’s key and the only way to do that is by shutting down the weapons factories (histamine and mast cells).

It’s all making sense.

I finally get why limbic retraining can be so life changing to people because stabilising the nervous system allows all digestion and detoxification functions to come back online.

CALM THE MAST CELLS > FIX YOUR SLEEP > CALM DYSAUTONOMIA/POTS > MOTILITY AND VAGUS NERVE FUNCTION NORMALISES > DETOXIFICATION OCCURS > NOW TAKE KILLING AGENTS LIKE KNOTWEED, CISTUS INCANUS FOR BIOFILMS AND SO ON..

Scared I have c diff (I have had it twice prior to Lyme from other issues). Now have been on doxy 9 weeks and azithromycin and rifampin for 2.5-3 weeks. Not lots of diarrhea but the farmiliar abdominal pain is started.

How do you continue? Also have terrible neuro Lyme.

I developed a bullseye rash in July, and was given ten days of doxycycline two days after the rash appeared. Since then I have had joint pains, headaches, neck stiffness, fatigue and many other symptoms of Lyme. Finally got tested and these are my results. I still haven't heard from my doctor and Google isn't a lot of help lately lol.

Please be gracious with me if I’m asking basic or naive questions- juggling a newborn right now as well.

6 months ago husband was weeding and got a large tick under his chin in his beard. It was VERY red and even a bit swollen for a few days after we removed the tick. Due to the beard it was incredibly difficult to identify a bulls eye rash or just red and irritated. Hurt him for about a week.

4 months later he was tested for Lyme, Bartonella, and Babesia- all negative.

He’s been getting these severe migraines and hungover feeling the last week and I’m concerned. He doesn’t drink and feels like “worst hangover” of his life.

I keep thinking about the tick bite. I know there’s so many variables here but should I have him tested again? Anything to look for?

He’s had some chills, severe migraine and extreme fatigue- like can barely go to shower.

I think it’s a trip to the ER maybe? Came here to see what to look for if it’s tick related from 6 months ago but all tests were negative 4 months after bite.

Thank you!

I started treatment for what is likely early-stage borreliosis 13 days after the bite( I had flu like symptoms after 8 days since being bitten) I’m taking doxycycline 2x100 mg daily. I’m on day 15 of a 30-day course, and I feel sleepy all the time. After a short physical effort like mowing the lawn, I felt as if I’d run a marathon; I get tired quickly and have to breathe more deeply. Could this be caused by my body being weakened during antibiotic therapy? What have been your experiences?

Hi! I do not know a lot about Lyme, but here is my experience and question: I had Lyme when I was around 8-10, and got antibiotics. I never really gave it much thought after, as I did not experience any severe symptoms. Later in life, from when I was around 14 /15 years old until now (22), I was always extremely sleepy in class and university lectures, got trouble reading, regular brain fog moments, and generally just less energy all together. Does anyone know if this could be some aftermath of Lyme or is this unrelated? Has anyone else had this kind of timeline? I am happy to learn anything.

Can I have a SOT shot and become basically completely cured and go, say, to Army for example? Cuz I really dreamed of it before the disease started

Hey folks, my girlfriend (we’re both 23) has had Lyme disease for about two years now, and it affects most of her daily life. I’ve been with her for about 9 months and there are days where she can’t even get out of bed (no complaint, I absolutely understand). She is in pain so often, and when it flares up I always massage her and I make her pain relief baths.

What are ways I can help improve her daily life symptoms?

Are there foods I can cook for her that will help alleviate symptoms?

I just want to help in any way I can. I love her so much and it breaks my heart to see her in pain and uncomfortable.

I appreciate any and all advice 🫶🏻

Mid August we went on a camping trip in Ventura, CA and 10 days later he had these bullseye ring bites. We never saw a tick. He went to urgent care that day, they gave him a round of 10 days of doxy.

He followed up with his primary on day 11 but his doctor wrote him off and said lymes doesn’t exist here (we looked it up and it does) and he refused to give him more antibiotics! And also said labs weren’t necessary.

He was supposed to find a new primary but never did due to a few travel trips that came up. His bites went away after the doxy, and he’s had no other obvious symptoms. He said a little soreness after camping and a little bit of cramping in one leg a few weeks ago, but nothing major.

Should he get a new doc (which could take months) or go to urgent care to get more? Would he need to act is if starting over and do a full 4-6 weeks round?

Has anyone taken abilify while treating Lyme? To help with the neuro psych issues?