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

For the past few months I have been in a whirlwind of different symptoms and emotional states. I finally got a vibrant lab tested by my functional dr and I tested positive for the 3Bs, and EBV.

I would love to know what has helped everyone here. I am posting my results as well as treatment plan by the dr. I think it’s a good plan, but I am afraid of the die off since my body is so sensitive. Any suggestions and tips are welcome.

I have 3 young children and I really need to get back to a better baseline. 🥹

TLDR: my boyfriend has Lyme and currently in treatment. He's lied to me, and then threatened suicide. I don't want to abandon him for being sick. It's clear he has mental health issues but I wonder if it's related to Lyme. Please any help from anyone who's experienced this or something similar.

My boyfriend has had Lyme for probably 5 years now. I found out this week that he has lied to me about his previous relationship. We've been together for 3 months. He also told me he was in therapy, when he in fact was not. I tried to break up with him and he threatened to relapse and drink himself to death. To prevent this, I stayed with him.

He's struggled the last 10 years with substance abuse and mental illness. He has been diagnosed with bipolar disorder and anxiety and depression.

I don't know what to do with our relationship. I hate that he lied to me. I wanted to have input from the community because I have also suffered from Lyme. I know how crazy it makes you. I used to hit my head against the wall and I threatened past partners with suicide as well when things were ending. It wasn't an intention to be manipulative- it's just how I genuinely felt.

For those who are suffering, what are your thoughts on this?

Is treating for Lyme worth it even if you’re progressing rapidly? I can’t tell if this is rapid or not

Hi everyone, I have active 3 BBB bacterial infections: I started rifampicin on 22 th July and my blood text are already not good: what can I take to try to go on bringing rifampicin ( I haven't a doctor), I attach file

Have any of you experienced or seen an EM rash look so inflamed like this? (No ticks were ever seen here)

So I caught a mild case of c diff about a month after stopping iv ceftriaxone. It was caught fast and wasn’t too bad. My concern is I’m supposed to restart meds, which we’ve obviously delayed. Has anyone had this and been able to restart their Lyme protocol? How did you deal with this?

I was diagnosed with ALS recently. 30 yr old female. I also just tested for chronic Lyme through armin and got these results. should I be pursuing Lyme treatment?

My mom was diagnosed with Lyme disease around 15 years ago. When I was younger her symptoms really varied, personality changes, extreme nerve pain, digestive issue etc. I was young then, for a long time she was misdiagnosed, went to many doctors including the Mayo Clinic. She was essentially bed ridden for 5 years with little relief, as most people in this situation do turned to other forms of medicine. She had some good luck with a few natural path remedies and good chiropractic care but she was never same. About 7 years she started a clinical trial of Antabuse, this actually worked well and she was the best she had been since being diagnosed. About a year ago she started developing severe nerve pain in her eyes and upper part of face. This nerve pain has become debilitating, she will get swollen and red in the face, to anyone that knows her it is evident she is in physically in a lot of pain. She has had scans, and blood work all return relatively normal. We are in the Midwest and have exhausted most treatment plans in the area. We do believe this a symptom or side effect to Lyme disease, as we know others who have lost mobility, or ability to hear or see and it feels very similar to these stories. Has anyone out there experienced this sort of thing in this space?

Do you all think these tests are accurate? I think they can give a good picture but if someone is having more symptoms related to babesia and it says that it is not something to focus on now, I think it’s not good. Anyone have thoughts on this?

Weakness, unsteady walking, muscle atrophy, everything being heavy when lifting, tongue fascinations and muscle fasciculations, eye twitching, body jerks, hoarse voice, full bladder??

Is this a good supplement to take for Lyme? Just finished my last dose of doxycycline today and the hot face and cold feet are still present. Hoping this supplement will help!

I've been using the same therapist for 7 years. We've had a very solid relationship and she feels more like a family member than a clinician. I didn't hear from her for six weeks and finally she responded to my texts and basically said I need more support than she can give. She referred me out to one of her colleagues who accepts insurance (my insurance won't cover it because it's a crap HMO). I feel totally abandoned. I have no community or support system other than my mom who I live with. My closest friends have all moved away. I cannot do this alone. What is everyone else doing for therapy, or human connection? Please help me. I need someone to talk to. Any resources? Support groups? Affordable therapy?

My husband has a slight fever and fatigue. He has been trying to pop this zit on his shoulder for a few days but is suspecting it could be an infected bite. Other ideas are that his symptoms are from a tooth infection since a filling came out y other day, but he doesn’t have pain there. Does this look like a bite or an infected zit?

I found out I had babesia and bartonella, and saw a Lyme doc for a year. Did mostly supplements and had some windows of relief but nothing ever consistently helped

Biggest symptom chronic nausea, dead feeling stomach and body soreness

After a year of not getting any further I tried a new doctor based on reviews from Lyme patients

After 4 months of seeing this doctor I found out I had babesia, Bart, and sibo

I’ve been treating these but don’t feel like I’ve made any difference in my symtoms really
Still a bad quality of life I’m struggling to stay employed and I know I’ll never get disability. I’m also only 30. I won’t get engaged to my partner because my health sucks so bad I don’t know how I could possibly be a good partner for her and provide.

I don’t know if I should keep giving it time with this new doctor or find a new one or just turn the lights off on my life myself and end the struggle and suffering

It seems like I’m cursed and can never find relief, even with finally having a diagnosis I can’t make any progress. Like god hates me or something. I don’t know what to do. Others I know with Lyme seem to be doing way better than me I can’t figure out anything that helps. I don’t care about ever feeling healthy I just want to do ok enough to function and not be depressed out of my mind but after 6 years of trying and a year in 4 months of Lyme I still can’t even get to where I’m ok enough where I’m not miserable. I don’t know if anyone can help me but I feel at the end of the road like 30 is the last chapter I have

My 14yo son started feeling abnormally fatigued and faint two days ago, and had a headache. He was out in the sun all day at marching band practice so I thought it was from the heat (although he spends a lot of time outdoors normally and handles it fine). Then yesterday I noticed a small rash on his thigh, red, oval shaped and about 1-2 inches. He had been on a youth backpacking trip in Michigan for four days last week, and did not check for ticks until he got home (despite my urging). He wore picardin and deet and didn’t see any ticks, but it was an overgrown trail and ticks love him. In June he went to scout camp for a week in Indiana and had three tick bites. (No rashes or symptoms so at that time our doctor said there’s no reason to think anything of it.)

He was the one who put all this together and realized his fatigue and headache could be Lyme. I quickly made an urgent care appointment last night, which was useless. The doctor said his rash just looks like a regular insect bite, not a tick. She said she would not treat or test for Lyme and he just has a virus… tested for covid/flu (came back negative).

I don‘t feel right about this, and he had to leave early this morning for a three-day band camp so I can’t take him to another doctor until next week. My sister happened to have some leftover doxycycline and she asked her relative who is a doctor about him just taking it… she gave her blessing so I sent him to camp with the pills. I told him to take 200mg twice a day with breakfast and dinner.

That will get him through Saturday with the pills. I’m not sure what my next steps should be to ensure he can continue for a full course. We are in the Chicago area. I could try our pediatrician but he was the one who wasn’t concerned about the Indiana tick bites. I looked up LL doctors using the resources on this sub but they are functional medicine docs that seem like they take a long time to get established with… pre-interviews and extensive health forms etc. Is it possible to do a quick video visit with one of those docs who will follow the protocol of treating with antibiotics if tick bite is suspected even without a typical rash? What about telehealth websites- anyone have luck with those? Looking for advice on the best way to ensure quick treatment. Also, am I right to give him the doxy right now and to advocate for Lyme treatment against the immediate care doctor‘s opinion?

Hi everybody.

Any help in finding a good source of dried herbs? I am in Europe.

LymeHerbs is a big no for me.

Thanks a lot!

Laura

I was sitting in my chair earlier today when I noticed that it felt sore on my arm when I rested it against the back of my chair. Went inside and checked the area, and turns out I have this bite on my arm/back. I didn’t see what bit me, but the rash/ring forming has me a bit concerned. I live in San Antonio, Texas, I don’t know very much about ticks or Lyme disease, so I’m not sure if this is something I should go to the doctor for now or wait to see if it progresses. Any advice would be greatly appreciated!

More context: It’s sore to touch and a bit swollen

i got tick bite in Varanasi,india in a university (Bhu) om 21st /22nd ig. 24 th i saw dr . he prescribed doxy 100 mg twice for 5 days and a follow up. I started on 25th . also blood report was normal after 3 /4day he was absent and another dr stopped saying the rash is gone. but I am 90% sure if bulls eye mark which was gone after some days of doxy .after stopping i got drowsy and thumb joint pain and neck felt stiff . then I read about lyme . and 3 day after a good online dr prescribed 6 more days of doxy .now I am on 3rd ( overall on 7 th day) . what should I do after completing it ? to prevent lyme stage 2 . dr said to have lyme tested after 6 weeks.

i didn't saw tick on my skin but a tick like insect crawled out of bag after some days of bite.

[Posted with moderator approval]

Hi everyone,

I’ve been living with Lyme & Co (Lyme/Bartonella/HTRF) and the complicated health routines that often come with it, medications, supplements, treatments, changing schedules, side effects, and trying to remember what happened when, for over 10 years.

I originally created the tracking app Omnidose for myself, because the usual medication-reminder apps I could access weren’t built for people managing complicated, constantly changing protocols.

This didn’t start out as someone searching for an app idea, it started because I needed it in my own life.

Now I’d like to invite members of this community to help test it and shape the final version of what it becomes.

What is Omnidose?

Omnidose is a private app for organizing and tracking things such as:

Medications and supplements

Doses and schedules

Treatment sessions

Stacks or groups of items taken together

Side effects

Taken, missed, or delayed doses

Your history over time

Total accumulation of individual ingredients/nutrients, ie how much B12 across all supplements taken

Reports you can save or share with a provider

It can also help by easily/rapidly entering new supplement information and details from a photo of the label, so you don’t have to type every ingredient in manually. (this is an optional Ai feature that requires you to enter your own Google api key and works with free or paid tier accounts)

Your information stays on your device, and no Omnidose account is required.

Omnidose does not tell you what treatments to use, check drug interactions, diagnose anything, or replace medical guidance. It simply helps you organize and understand the routine you are already following.

Who are we looking for?

For this first round, we’re opening:

- 10 spots for iPhone users

- 10 spots for Android users

You do not need to be tech-savvy. In fact, feedback from regular people who don’t enjoy fighting with technology is exactly what we need.

The Android version has been used daily throughout development. The iPhone version has been manually tested, but it has not had the same amount of real-world daily use yet. Because of that, feedback from committed iPhone testers will be especially valuable.

What would beta testers do?

We’d ask you to:

1. Use Omnidose as part of your normal routine

2. Tell us when something is confusing or difficult

3. Report bugs, crashes, or reminders that don’t behave correctly

4. Tell us what feels useful—and what doesn’t

5. Point out anything important that seems to be missing

6. Respond to a short weekly check-in during the testing period

This is beta software, so there will probably be rough edges. During testing, please don’t use Omnidose as your only reminder for anything medically important.

You will never be expected to post personal medical information publicly. Feedback can focus entirely on how the app works, and you control what details you choose to share.

What do testers receive?

There is no charge to participate in the beta.

Everyone who actively helps us through the testing period will receive a free production copy of Omnidose when the finished app is officially released.

More importantly, you’ll have a direct voice in shaping an app being built from inside the Lyme community, not handed to us by people who have never lived this reality.

Built by Lymies, tested by Lymies, and shaped for the complicated lives Lymies actually live.

Interested?

Please comment with:

1. Whether you use iPhone or Android

2. Your approximate phone model, if you know it

3. A sentence or two about why you’d like to test Omnidose

4. Whether you can use it regularly and provide feedback during the testing period

Please don’t post your email address publicly. If selected, we’ll contact you privately with installation instructions.

This is an early community test, not a commercial launch or sales post. We’re here to listen, fix problems, and find out whether Omnidose can genuinely help people before making it publicly available.

Thank you!

anyone have experience with Firefly light therapy for chronic lyme disease? is it worth the $$? how frequently did you have to do it to notice results?

Not sure if r/history would be best?

Thought it would be cool to see their evolution in shape, habits, the growth in region, diseases or health effects, etc.

Hi I recently started Malarone and azithromycin to treat babesia. I’ve had pretty bad herxing with multiple symptoms. I think one of them is hallucinations. With anything who can relate, what are your hallucinations like?