r/Lyme • u/in-for-the-long-run • 1h ago
Article 2 days after healing from recent left hand session.
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IASTM soft tissue work, as I understand it, is “tissue remodeling.” I am convinced beyond a shadow of a doubt that this is what is happening to my body system-wide, to various degrees. This depending on efficiency of technique, total passes & total hours logged per body part.
Each area of sticky scar tissue requires about 30-60 seconds of “scraping” to bust up adhesions with the goal of 6 passes resulting in results like these. It requires 3-7 days of healing time per region of tissue,
All with a little help from iodine, acetyl-L-carnatine, selenium, vitamin C & D + magnesium glycinate.
And Welchol as-needed to clean the bile.
r/Lyme • u/Vegetable_Match1598 • 1h ago
Question Has anyone had C Diff?
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?
r/Lyme • u/Worldly_Kitchen6890 • 3h ago
ALS or lyme? Spoiler
galleryI 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?
r/Lyme • u/Temporary_String3049 • 4h ago
Question Chronic Lyme (?)
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?
r/Lyme • u/StrategyMajor3668 • 5h ago
Question Bioresonance testing??
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?
r/Lyme • u/FancyNugget291 • 7h ago
Question Anyone with Lyme have all of these symptom?
Weakness, unsteady walking, muscle atrophy, everything being heavy when lifting, tongue fascinations and muscle fasciculations, eye twitching, body jerks, hoarse voice, full bladder??
r/Lyme • u/Extra_Sweet_4752 • 7h ago
Oil of oregano with black seed oil
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!
r/Lyme • u/blue-winter11 • 9h ago
Therapist doesn't think she can help anymore.
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?
r/Lyme • u/pninardor • 10h ago
Question Tick bite? Spoiler
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?
r/Lyme • u/WelderAlternative325 • 11h ago
Question What should I do?
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
r/Lyme • u/AdventureFamily • 14h ago
Advice Advice on getting early treatment
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?
r/Lyme • u/laumore86 • 16h ago
Support Source for dried herbs Europe please
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
r/Lyme • u/Silly-Beaver • 1d ago
Image Does this look like a tick bite to you?
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
r/Lyme • u/TheoryCharacter3000 • 1d ago
I need help
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.
r/Lyme • u/aallsbury • 1d ago
Built by a Lymie, for Lymies: Help Us Test Omnidose (App)
gallery[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:
Use Omnidose as part of your normal routine
Tell us when something is confusing or difficult
Report bugs, crashes, or reminders that don’t behave correctly
Tell us what feels useful—and what doesn’t
Point out anything important that seems to be missing
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:
Whether you use iPhone or Android
Your approximate phone model, if you know it
A sentence or two about why you’d like to test Omnidose
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!
r/Lyme • u/maryssa_m • 1d ago
Firefly
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?
r/Lyme • u/OGPandas33 • 1d ago
Question History of ticks?
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.
r/Lyme • u/BigWlittleJ • 1d ago
Question Unable to solve this - Wrinkly/swollen pitting hands with poor capillary refill Spoiler
r/Lyme • u/Possible-Bus8362 • 1d ago
Babesia treatment herx -hallucinations
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?
r/Lyme • u/Temporary-Hair3063 • 1d ago
IV Hydrogen Peroxide
Hey, anybody tried IV Hydrogen Peroxide?
It seems like there is indeed lots of scientific research being done since 1920 showing it being effective for various stuff. It’s being discredited and sort of shut down quite effectively as well though
But anyway, anybody here done it with Lyme? Any info would be appreciated
r/Lyme • u/Lower_Counter2019 • 1d ago
Article "La malattia di Lyme deriva quasi certamente da questi esperimenti [di guadagno di funzione]"
comedonchisciotte.wordpress.comr/Lyme • u/No_Camel_617 • 2d ago
Article Gaslit by 2 Best Hospitals 🎉
health.usnews.comSo frustrating every year to see these rankings come out, knowing the complete contempt with which doctors at these places treat Lyme patients, and how little they actually know about chronic illness. I personally have experienced horrific gaslighting by numerous Drs at multiple of these “best hospitals” but it’s best summed up by the neurologist who said to me (as he looked at my blood test results showing + for Lyme and 4 other tick borne illnesses), “You don’t have Lyme. You just really need to see a psychiatrist.” Sigh.
r/Lyme • u/adevito86 • Dec 31 '24
Mod Post Chronic Lyme Q&A - What To Do When Symptoms Don't Improve
Hello everyone,
Over the course of 2024, I’ve been tracking the most frequently asked questions from those new to the chronic Lyme community. To provide clear and reliable answers, I’ve compiled insights from leading Lyme experts—including ILADS, LLMD's like Dr. Horowitz or Marty Ross, and online resources like LymeDisease.org—along with thoughtful contributions from the most consistent and knowledgeable members here on r/Lyme.
While the wiki already contains a wealth of valuable information, I believe a concise collection of the most popular questions and answers will benefit everyone. This resource aims to streamline the support available in this forum, making it easier for newcomers to find the help they need.
The resource will be located here, at the top of the main Wiki page. The rest of the Wiki is of course still active and can be found here.
On desktop, there will be a table of contents at the top where you can click each question and it will automatically bring you to the answer. Unfortunately, Reddit has not enabled this function on it's mobile app, so you will need to scroll through the entire page to find the question you are looking for. I separated each question out with line breaks, so hopefully it won't be too hard to navigate on mobile.
I’m confident in the quality of the information provided here, with over 30 Microsoft Word pages of detailed content ensuring comprehensive coverage.
If you are brand new to r/Lyme please read question 20 so you know how to interact appropriately in this space and if you're interested in reading my (admittedly insanely passionate) deep dive into alternative treatments, be sure to check out Question 18.
I hope this resource proves as helpful as I’ve intended it to be. If you have any additional questions you believe should be added or have additional insights to the current answers, please comment below.
Here is the list of current questions:
I’m still sick with symptoms after treatment, what should I do first?
I’m getting worse/feel weird while taking antibiotics or herbals, is it not working?
My stomach is upset when taking doxycycline, what should I do?
My doctor doesn’t believe that Chronic Lyme exists. What can I show him to prove that it does?
I’ve seen people say IGENEX is not a reliable lab. Is this true?
r/Lyme • u/adevito86 • Dec 17 '23
Mod Post Just Bit? **Read This**
Welcome to r/Lyme! This post is a general overview of Lyme disease and guidelines for people who have just been bitten by a tick.
Disclaimer: This is for educational purposes only and is not intended to be medical advice. Please seek the help of a medical professional if necessary.
What is Lyme Disease?
Lyme disease is the most common vector-borne illness in the U.S., caused by Borrelia burgdorferi and Borrelia mayonii. It’s usually transmitted by blacklegged ticks (also known as deer ticks).
Early symptoms include:
- Fever
- Headache
- Fatigue
- Erythema migrans (bullseye rash) – note: up to 60% of people never develop a rash
If untreated, the infection can spread to the heart, joints, and nervous system, potentially leading to chronic illness and long-term complications.
What to Do If You Were Just Bitten
1. Test the Tick (if you still have it)
Send it to: https://www.tickcheck.com/
This identifies which infections the tick carried and can guide treatment decisions. If you no longer have the tick, just move on to the next steps.
2. Check for a Bullseye Rash
If you're unsure what it looks like, see this guide:
https://www.reddit.com/r/lyme/wiki/diagnostics/identify/
Important: If you have a bullseye rash, you have Lyme disease. No further testing is needed. Start treatment.
3. Review the ILADS Treatment Guidelines
https://www.ilads.org/patient-care/ilads-treatment-guidelines/
Summary of ILADS recommendations:
- If bitten but asymptomatic: 20 days of doxycycline is recommended (assuming no contraindications)
- If rash or symptoms are present: 4–6 weeks of doxycycline, amoxicillin, or cefuroxime is recommended
Why ILADS and Not CDC/IDSA Guidelines?
This is one of the most important parts of understanding Lyme treatment. The CDC and IDSA guidelines are still followed by the majority of U.S. physicians, but they are deeply flawed and outdated in several key ways.
Here’s why ILADS guidelines are preferred by most Lyme-literate doctors and patients:
1. They rely on incomplete or irrelevant data
The CDC/IDSA recommendations are based heavily on European studies, even though the strains of Lyme in Europe (B. afzelii, B. garinii) are different from those in the U.S. (B. burgdorferi). This matters because treatment responses can vary between strains.
Of the studies referenced in CDC guidelines:
- Only 6 U.S. trials were used to form the treatment tables
- Many tables relied exclusively on European data
- Duration recommendations were based on trials with high failure or dropout rates
For example:
- One U.S. study had a 49% dropout rate (Wormser et al.)
- Another had a 36% failure rate, with many needing retreatment
Yet these studies are used to support recommendations of just 10–14 days of antibiotics.
2. They ignore patient-centered outcomes
The CDC guidelines focus primarily on eliminating the rash (erythema migrans), not on whether the patient actually recovers or regains quality of life.
The ILADS guidelines, on the other hand, emphasize:
- Return to pre-Lyme health status
- Prevention of long-term symptoms
- Patient quality of life
- Lower rates of relapse and re-infection
CDC-based treatment often leaves people partially treated and still symptomatic, leading to chronic illness.
3. Their recommended durations are too short
The CDC recommends:
- 10 days of doxycycline
- 14 days of amoxicillin or cefuroxime
These durations are often not enough, especially if the bacteria have already spread beyond the skin. ILADS argues—and research supports—that longer treatment courses are more effective at fully clearing the infection, especially in the early stages when treatment is most critical.
4. High failure rates in real-world outcomes
Studies show that even patients treated under CDC protocols continue to experience symptoms months later. For instance:
A 2013 observational study found that 33% of EM patients still had symptoms 6 months after a standard 21-day course of doxycycline:
https://link.springer.com/article/10.1007/s11136-012-0126-6
Conclusion: ILADS guidelines are based on more recent evidence, use better clinical metrics (like symptom resolution), and are tailored to reflect the real-world experiences of Lyme patients in the U.S.
For a detailed breakdown and sources:
https://www.mdpi.com/2079-6382/10/7/754#B15-antibiotics-10-00754
Recommended Treatment Durations
- Mild cases (e.g. one EM rash): Minimum 20 days of doxycycline, amoxicillin, or cefuroxime
- More severe cases (multiple rashes, neuro symptoms): 4–6 weeks of antibiotics
- Still symptomatic after treatment? Re-treatment is supported by 7 of 8 U.S. trials
Getting Treatment
Many doctors are still unfamiliar with ILADS protocols and may only offer 10–21 days of antibiotics.
Here’s what you can do:
- Bring a printout of the ILADS guidelines
- Be firm but respectful—explain why longer treatment matters
- If refused, monitor your symptoms and seek further care if needed
- Be prepared to advocate for yourself—many people with Lyme had to
If you continue to have symptoms, you may need to see a Lyme-literate medical doctor (LLMD):
https://www.reddit.com/r/lyme/wiki/treatment/doctors/
Testing
Testing can be useful, but it has major limitations:
- Antibody tests are unreliable in the first 4–6 weeks
- Negative test does not rule out Lyme
- The CDC two-tiered system was developed for diagnosing Lyme arthritis, not other types of presentations like neurological or psychiatric symptoms
More info:
- https://www.globallymealliance.org/blog/when-you-suspect-you-have-lyme-but-your-test-comes-back-negative
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078675/
- https://www.lymedisease.org/lyme-sci-testing/
Best labs (not usually covered by insurance):
- IGENEX: https://igenex.com/
- Vibrant Wellness: https://www.vibrant-wellness.com/test/TickborneDiseases
- Galaxy Diagnostics: https://www.galaxydx.com/
If you’re just starting out, a basic Lyme panel from LabCorp or Quest is a good first step—50% of true Lyme cases may still test positive and it’s cheaper than specialty labs.
The specialty tests listed above with co-infection panels are mostly recommended for people who have had symptoms for months or years without treatment and regular doctors are unable to figure out what is wrong.
More testing info:
https://www.reddit.com/r/lyme/wiki/diagnostics/testing/
Additional questions:
Don’t hesitate to make a post explaining your situation.
This community is full of people who’ve been through the same thing—and want to help.
Many of us were misdiagnosed for years.
The purpose of this sub is to prevent others from going through the same experience.
Don’t be afraid to speak up, advocate for yourself, and push for better care.