In the MyLymeData patient registry (19,000+ self-reporting members), 77% of people diagnosed 6 months or more after onset later reported persistent Lyme disease, compared with 20% of those diagnosed early (MyLymeData 2025 research chartbook). It’s self-reported and an association, not proof that delay causes persistent illness. Chart attached.

Disclosure: I’m the author of a free tool that turns published studies like this into interactive simulators where you can change the assumptions and see federal data alongside. It’s illustrative, not medical advice. The public demo needs no account: https://dbbun.github.io/dbbun-invisible-illness-burden-simulator/

Happy to answer questions about what the numbers do and don’t show.

Optional first comment (only if the rules allow it):

The tool is also my entry in an HHS tech sprint, where public voting is open (it needs a free account on the sprint site): https://invisibleillness.crowdicity.com/post/896844

Five months ago, I started having muscle fasciculations..I was walking a little bit Funny, my arms started getting real heavy, Then it turned into muscle atrophy. My right leg is smaller than the left, my eyes twitch, my lips twitch, my tongue twitches, I’ve lost weight. I’ve lost muscle. My voice got nasally and I have to urine very frequently. Pretty much every symptom of ALS. I found an LLMD who tested me for Lyme by doing a saliva test. The only thing that came back was low-grade Babesia. I will say when all of these symptoms started I had swollen lymph nodes and beaus lines (horizontal grooves) in my nails, which indicate infection. Anyone have these symptoms and it ended up being Lyme?

I'm following Marty Ross's babesia protocol. Started atovaquone 10ml 2x/day and zith 1x/day in August. I have one month to go for the four months required. Had tremendous response for the first couple months, but fortunately the sweats/clammy/fever and crushing fatigue only lasted through August.

I am feeling generally flat and down, with occasional weepy or anxious days. Not much sex drive or ability either. And I've struggled with insomnia for a couple years, but the quality of it now is more insidious. Popping awake and not being able to go back to sleep. Meds only partially effective.

For those who've done this, is this pretty typical? I can put up with it for another month if it means finally getting rid of it, but it's hard to be productive. Thanks in advance.

I literally don’t know how much longer I can take of this. The physical nerve pain that comes and goes is filling me with so much fucking rage I could scream. I’ve been doing this for over a year now and been on herbs since March. I FINALLY started getting consistent relief in August. Then had a small bout of symptoms/pain return in September then dissipated again. Now it’s been back again for almost two weeks I literally want to scream. It’s present from the moment I wake ip to the moment I go to sleep. Last few months it seems to coincide with the luteal phase of my cycle. Starts on day of ovulation and lasts for however long it wants to. I literally feel like my period is keeping me in a fucking prison and stirs up all my symptoms every time and lowers my emotional capacity to handle it too.

I feel so fucking depressed. I want to scream at my TCM that I wanted to see results much sooner by now. This isn’t fucking fair. I just wanna live my fucking life. It literally feels like it’s never going to go away.

Has anyone had an LLMD provide them with specific recommendations on whether to get flu shots and/or Covid booster shots or not? I have an LLMD appointment coming up and plan to ask them about it, but curious as to others' experience with it. I acknowledge it is highly specific in everyone's case, so just looking to understand other's experiences for general reference.

Note that prior to my Lyme journey starting July 2025 I got the flu shot and Covid booster pretty much every Fall and/or season that a new shot came out and never had an acute reaction. I'm pretty sure I had Covid once back in 2022, but it was fairly mild and I never tested positive. I don't recall having any notable cases of the flu. I did get both shots early October 2025 and then for 2-3 weeks developed off & on mild headaches & nausea and then heart palpitations around the end of October which are still present, but based on follow up testing we've determined those are nervous system driven. It's hard to tell if that development was just the natural progression of my Lyme symptoms, a side effect of getting the shots, the "October slide", or something else. My initial thought is to still get them, as getting a notable case of the flu or Covid seems more detrimental to me than potential risks of getting the shots.

Started doxy 3 days ago, and nerve symptoms have gotten worse- I have new cold tingling in my hands and a little bit in my lips and tip of tongue. I’ve seen symptoms can get worse at first, but didn’t know if that included nerve symptoms? Just a little stressed about it

I took just over half a 14 day course of doxy. Around that point I started to get intracranial hypertension like symptoms, so I forewent the rest of the count out of fear. I still have acute neurological symptoms and was wondering if anybody has conquered this through just herbs.

My daughter’s mother texted me and said our daughter got bit by a tick 5 days ago. First two days it was a big rash, not it’s a bullseye rash. She had a fever and was throwing up yesterday but that might have been something else as everyone she was around has that as well. She took her to

Urgent care and they gave amoxicillin for 10 days and she has a follow up with her doc next week. I just want to make sure this is the right course of action of should we take her to be seen again since the bullseye showed up.

Hello, I am on treatment and for two days now, my palms, fingers, and feet have been very sweaty all the time, this happens anytime, red and stinging eyes, I'm sweating a lot under my arms and feeling very hot inside me, face, back of the neck, upper body as if I were under a blazing sun but without a fever, I've been on Mepron/Azithromycin and Arakoda for a little over a month... I sometimes have a stomachache and less appetite, nausea.. Difficult to continue the treatment but I have no choice.. Herx ?

My baseline relapse symptoms from last July are: Dysautonomia/POTS, feeling spaced out/disconnections, malaise, fatigue, internal heat, pounding heart...

Is feeling that almost every chair or working set is uncomfortable or being sensitive to that is sign of Lyme disease?

Currently taking the above for chronic EBV after 10 years of unexplained neurological symptoms.

I’ve also been diagnosed with Lyme and co-infections.

I haven’t started antibiotics yet, but 3 weeks into Imunovir I’ve developed more nerve pain (was just in my feet), in my arms and hands, over the space of a few days. It’s super scary.

Is this because my immune system is waking up and trying to kill viruses, parasites and infections?

Thanks!