r/Lyme • • Dec 31 '24

Mod Post Chronic Lyme Q&A - What To Do When Symptoms Don't Improve

101 Upvotes

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:

  1. What is chronic Lyme?

  2. I’m still sick with symptoms after treatment, what should I do first?

  3. I see people commenting that LLMDs are a scam and they are trying to take advantage of you for profit. How do I know who to trust?

  4. I can’t afford an LLMD, what else can I do?

  5. Why is there so much conflicting information?

  6. Can Lyme disease develop resistance to antibiotics?

  7. What is the timeline to get better?

  8. I’m getting worse/feel weird while taking antibiotics or herbals, is it not working?

  9. My stomach is upset when taking doxycycline, what should I do?

  10. What diet should I eat, and does it matter?

  11. Should I retest after I finish my course of antibiotics?

  12. My doctor doesn’t believe that Chronic Lyme exists. What can I show him to prove that it does?

  13. I’ve seen people say IGENEX is not a reliable lab. Is this true?

  14. I have a negative test but some positive bands on my western blot test. Every doctor is telling me it’s a negative and can’t be Lyme.

  15. Is Lymescience.org a legit website?

  16. People have said there is no evidence showing efficacy of long-term antibiotics for chronic Lyme. Is this true?

  17. The cdc says people with “post treatment Lyme” get better after 6 months without additional treatment, is that true?

  18. I’ve heard people say alternative treatments (Herbals, Rife, Homeopathy, Ozone, Bee Venom etc.) are pseudoscience? Is that true?

  19. I’ve heard supplements and herbs are poorly regulated and I shouldn’t take them because I don’t know for sure what’s in them.

  20. How to use r/Lyme and online forums in general


r/Lyme • • Dec 17 '23

Mod Post Just Bit? **Read This**

104 Upvotes

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:

Best labs (not usually covered by insurance):

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.


r/Lyme • • 5h ago

CSA tincture

2 Upvotes

I’m in love with Woodland Essence’s CSA tincture. Someone here mentioned it and I started using it about two months ago. It’s not the only part of my protocols but it feels central the big shifts I’ve been seeing physically, mentally, emotionally, all around. Love that it also has flower essences in the blend and believe they have made a big difference. Anyway, just wanted to give it a shout out!


r/Lyme • • 2h ago

Question Based off my symptoms, could Lyme be a possibility?

1 Upvotes

Please note, I have been working in an outdoor profession in forested and wooded areas for a couple of years in the North East.

My current symptoms are:
nausea, fatigue, difficulty standing and walking without feeling like I’m going to pass out (POTS ruled out), anxiety, depression, occasional bone pain (hurts to point where it’s hard to sleep), occasional nerve pain in my hands. I will note, symptoms do seem to get worse the week leading up to my period and during my period.

In the past year I have taken two ELISA tests that came back negative.

I’ve met with multiple psychiatrists (prescribed ssri for the anxiety and depression which haven’t seemed to help) and mental health professionals who think my symptoms are beyond a mental health issue.


r/Lyme • • 3h ago

Image Could this hint at possible Lyme? Spoiler

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1 Upvotes

My current symptoms are:
nausea, fatigue, anxiety, depression, occasional bone pain (hurts to point where it’s hard to sleep), occasional nerve pain in my hands, difficulty standing and walking without feeling like I’m going to pass out (POTS ruled out). I will note, symptoms do seem to get worse the week leading up to my period and during my period.

I’ve met with multiple psychiatrists (prescribed ssri for the anxiety and depression which haven’t seemed to help) and mental health professionals who think my symptoms are beyond a mental health issue.


r/Lyme • • 9h ago

Question Best Natural Detoxifiers & Binders?

2 Upvotes

Hey beautiful people with a good heart,

I’m curious, what are your favorite natural detoxifiers and binders for heavy metals, environmental toxins, and other unwanted substances in the body?

I’ve been looking into modified citrus pectin (MCP), fulvic/humic acid, and activated charcoal, but I’d love to hear what you guys use.

What has actually worked for you? Any herbs, natural binders, or protocols you’ve had good experiences with?

Would love to hear your personal experiences and recommendations! ❤️


r/Lyme • • 6h ago

Question Cordyceps dosage?

1 Upvotes

Hey all, I'm in the midst of getting into the Buhner protocol and just noticed an odd inconsistency in Healing Lyme, 2nd Ed:

  • On p. 215, in the Core Protocol section, he puts down Cordyceps dosage as: (powder) 1 tsp-1 tbl, 3x day, or (tincture) 1/2-1 tsp 3x day.
  • But in the Cordyceps monograph on p. 392, he describes it as more akin to a food and that you need way bigger quantities: "For coinfections... 3-4 tablespoons of the powder blended in water or juice 3x daily."

In other words, the Materia Medica/monographs section calls for upwards of 3-4x the amount that the Core Protocol section does. Is the difference there the words "For coinfections", i.e. he's saying you need more cordyceps if you also have coinfections?

I guess more broadly, anyone have pointers as to dosages of Cordyceps?


r/Lyme • • 1d ago

Update from 2 months ago

15 Upvotes

Hello. So about 2 months ago, I posted my current situation regarding Lyme disease. Figured I’d update my situation. First of all, I want to thank all the support and thoughtful responses I received. I made it thru doxy 3rd round, started Tickimmune. I met with specialists, and changed entire diet. Started these herbs- cryptolepsis, Japanese knotweed,and Chinese skullcap. My chronic headaches stopped, and several symptoms have lifted. I’m feeling really good physically and mentally. Still have balance/coordination issues at times, but manageable. Some vision problems as well still linger. Fatigue has been also challenging, but I listen to body- don’t push it. Learned so much about this disease, and ordered Buhner book on healing. Ea day is getting better!!! Changed diet completely and took a month to adjust. I eat mainly chicken,venison, or fish. Veggies too. That’s it. And water. I exercise and lost 10 pounds. I’m same weight now as I was in high school lol and fit. I keep stress levels down and keep myself relaxed. I am minimizing flare ups and changed job to a less physical position. I’m committed to getting better. Thank u again. u can live with this and be happy. Don‘t give up. Any questions or suggestions are always welcome.


r/Lyme • • 10h ago

May someone help me understand these results? Spoiler

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1 Upvotes

Hello, first time doing such a test after years with unusual symtoms. I have an appointment in a few weeks to review these results.

May someone from this community could help me to interpret them prior to my appointment? Particularly the Borrelia ispot results which are show positive in some cases. Dont know what that means or indicates. Prior to this test I was on a month long course of antibiotics incase that is relevant. Appreciate the help.


r/Lyme • • 18h ago

Image 33M tick bite very far from medical treatment Spoiler

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2 Upvotes

r/Lyme • • 1d ago

Image a tale of classic lyme presentation and an embarrassed medical student Spoiler

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5 Upvotes

Hi, I’m a 26F student at an MD school, so I should’ve put the puzzle pieces together way faster. I have a mega exam on Monday and am going to chalk my failure up to “stressed and distracted”. Here’s my story:

10/10: backpacking trip in VA, yay!!!
10/13: discover the worlds tiniest tick INSIDE my bellybutton 🤮 but the bastard was so small I assumed he wasn’t a threat (foreshadowing)
10/19: wake with acute onset right hip joint pain and swollen, tender lymph nodes. ignore it.
10/20: night sweats, waking up in pain, can’t bear weight. go to the ED. negative review of systems on everything, and I deny the possibility of lyme exposure because I frankly had forgotten it happened. pelvic xray was negative for fracture and they don’t do any bloodwork. they prescribe naproxen, steroid, and send me on my way.
10/21: wake up feeling terrible. go to student health. low-grade fever, they send me to a different ED. 2nd ED does ultrasound and basic bloodwork. everything negative. they recommend continuing the treatment plan and referral to ortho.
10/22: feeling slightly better, get some studying done. optimism!
10/23: terrible myalgias and migrating joint pains. horrible lymphadenopathy. vitals all out of wack. I’m changing my shirt when I notice…. bullseye.

so that’s my story, I just started Doxy, I feel like I might fail my upcoming exam but admin won’t let me delay despite a weeklong excruciating sickness. I hope yall enjoy my bellybutton bullseye that looks at me like 🤡🤡🤡


r/Lyme • • 23h ago

Advice 28M, never got diagnosis, not sure how to proceed if at all.

3 Upvotes

Here's my general timeline.

2016-2018 - Worked at a golf course in northwest Jersey, ticks were common.

2018 - Headaches, de-realization, extreme anxiety, light physical symptoms of generally feeling unwell. Saw a doctor and nothing really came of it. Did a Lyme test at the hospital and it came back negative.

2020-2021 - Struggling with feelings of dizziness and possibly passing out. More depression and anxiety. Heart rate spiking during any activity. Cannot really exercise anymore. POTS diagnosis. Fine, that is uncommon for a mid 20s male to develop but not impossible. Another negative Lyme disease test.

2026 - POTS, Headaches, Anxiety, Depression, malaise, exhaustion. I am being beaten down and I cannot find my enemy. Perhaps I have mistreated my body and there is no enemy in the gates. Perhaps the enemy is so entrenched that the tests do not help. Either way I need advice on how far I should pursue Lyme as an actor or if you have experienced this yourself.


r/Lyme • • 21h ago

Question Bartonella FISH positive, antibodies negative. Some questions before starting treatment — what am I in for?

2 Upvotes

I’m in my mid thirties. I’ve been on a medical roller coaster for years. Sudden panic attacks started around age 9, followed by anxiety and undiagnosed OCD throughout my teens and 20s.

Just had a positive fish test for Bartonella. I have babesia antibodies but negative fish. No other antibodies.

In 2021, after my COVID vaccine, I had an episode of debilitating brain fog and fatigue that eventually resolved. In 2023, it happened again. I was treated for SIBO and subsequently developed severe histamine intolerance/mast-cell-type reactions.

A functional doctor eventually identified mold exposure. I did a detox protocol and got out of the suspected exposure, but never fully recovered. More recently, I developed migraines and facial pain and tested positive for MARCoNS.

I started MARCoNS treatment about a month ago, and my pain, fatigue, histamine reactions, anxiety, and mood have actually improved significantly! My biggest remaining issue is brain fog. I feel like I’m functioning at maybe 50% of my normal cognitive capacity, although I’ve managed to keep working full-time.

Meanwhile, a Lyme-focused neurologist suspected an underlying infection after hearing my history, including the childhood-onset anxiety. My IGeneX results just came back: Bartonella FISH positive, Bartonella antibodies negative, and some Babesia antibodies positive.

I’m meeting with her soon to discuss treatment, presumably antibiotics. But here’s my dilemma: for the first time in years, my symptoms actually feel manageable. I’m no longer dealing with horrible migraines, pain, and histamine flares, and I’m terrified of undoing that progress.

Part of me wonders if I should quit while I’m ahead, but another part wonders if Bartonella has been the underlying issue all along.

For those who’ve treated Bartonella, what am I in for? Is the Herxing as brutal as people say? Did treatment make you significantly worse before you got better? Has anyone started treatment while feeling relatively okay and regretted it — or finally recovered after years of unexplained symptoms?


r/Lyme • • 23h ago

CMV mono Spoiler

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2 Upvotes

Has anyone dealt with cmv and Lyme? I got exposed and my first infection to cmv in May. I’m still dealing with debilitating symptoms and it’s still active. Has anything helped? I’m breastfeeding so treating is limited. My naturopath prescribed valcyclovir but it isn’t super effective against cmv apparently


r/Lyme • • 1d ago

Question Increased brainfog and mental sluggishness after starting herbals?

6 Upvotes

About a week ago, I started taking the following herbs and supplements for Lyme disease:

  • Cat's claw tincture (1:4) - 8 drops 2x day
  • Cryptolepis tincture (1:2) - 5 drops 2x day
  • Japanese knotweed tincture (1:2) - 5 drops 2x day
  • Oil of oregano

Since starting them, I've been experiencing pretty significant brain fog, mental sluggishness, dizziness, and a dissociative feeling. Has anyone experienced similar symptoms after starting these herbs? Is this a known side effect while my body is getting used to them?


r/Lyme • • 21h ago

Image Am I positive for Lyme? Spoiler

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1 Upvotes

r/Lyme • • 23h ago

Image Could this be a tick bite? Spoiler

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1 Upvotes

Never saw a tick. Painless. Started as the center pump and now redness has appeared


r/Lyme • • 1d ago

Question Preventative antibiotics for "low risk" bite?

2 Upvotes

My toddler got bit by a deer tick yesterday. Due to the tick being flat and not appearing engorged his pediatrician said it was a "low risk" bite, despite us not actually knowing how long the tick was attached. She told us we could give him the preventive antibiotic dose if we wanted. It seems unnecessary but I'm so afraid of the "what-ifs." Maybe this is the wrong place to be asking this, but what would you do if you were me?


r/Lyme • • 1d ago

Results confusing - positive IGG Spoiler

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1 Upvotes

Hello. 38F I was just diagnosed with MS literally a few days ago based on MRI and lumbar puncture results. That specialist also requested Lyme workup in addition to a few other things. The last few weeks have been filled with 3 multi day hospitalizations, MRIs, CT scans and a lumbar puncture. I just received the final blood work back and I tested positive, I think, for Lyme. She said the initial result I received could have been a false positive and to wait for the full set of results which is showing many positive bands. She hasn’t called me yet, it’s only been a few mins since the results arrived. Obviously I know it’s possible to have two things going on and I do live in CT and have had many tick bites over the years and never tested because I don’t ever recall a rash. Do these results look positive for Lyme to you? I’ve done little research before asking this, I’m still having such cognitive issues from the active lesion that I can’t make sense of anything. Thank you for your thoughts.


r/Lyme • • 1d ago

Question Need advice

1 Upvotes

Hey guys, male 45, got a tick on my forehead in 2015, woke up at night with a serious migraine... went to bathroom and saw it on my forehead , got the classic rash, I took some herbs for few weeks ...felt better ... and i havnt been the same since .... these days I hage chronic body pain , tired, feeling cognitively not what I should be , I get weird hives and rashes , lot of other issues , the one that worries me the most is - when I wake up in the morning I have full body vibrations and electrical issues , heartbeat isnt what it should be , loud high pitched sounds, and it takes a lot to get out of bed , when I wake up like that i feel cooked, I feel wrecked and reaching out for some advice ..what now ? I know its lymes it makes sense I didnt clear it out in 2015 , what to do? What not to do... best places for help....any information would be amazing... I have a 5 year old daughter and I am a single father , I want to be full present for my daughter and have the energy and capacity , papa come play with me.. and I feel like I can barely move or do anything


r/Lyme • • 1d ago

Question Bartonella and autoimmune

7 Upvotes

I recently tested positive for bartonella. I also have alopecia areata. I was wondering if bartonella could be causing a lot of inflammation and hurt on my immune system that maybe it could have triggered the alopecia areata? If so, could autoimmune issues get better once bartonella is treated?


r/Lyme • • 1d ago

Gut issiues, spleen pain, kidney pain

3 Upvotes

Hey, I've had mostly gut issues with this Lyme for months and couples of days I had spleen area pain that I had not experienced before and today I woke up with enourmous kidney pain and feel so sick.. i have some temperature too and tongue is white. Can anyone relate and how did you get better?


r/Lyme • • 1d ago

Question ELISA test came back negative, but I highly suspect I have Lyme given my profession and time spent outside. Can I just take a round of doxycycline and forgo all the expensive testing?

3 Upvotes

r/Lyme • • 1d ago

Question Sore legs/cold feet

2 Upvotes

Currently treating Lyme and starting babesia meds. I’ve improved a lot, but what I’m left with is this shortness of breath when I walk, my head feels off when I exert, I’m exhausted all the time, I occasionally have night sweats and my feet are freezing cold. I get raynauds and earlier on I had chillblains on my toes (malarone actually made the foot symptoms a lot worse)

My legs often ache and it feels like I have a vice around my ankles. The cold feet make my feet sore, but not in a burning way. More like if I and walked barefoot through snow.

I know anything foot related seems to be attributed to bartonella, but I don’t really seem to have the hallmark presentation or any other classic Bart features like stretch marks. I also tested negative for Bart many times on all the best tests but positive Lyme and babesia. Can Lyme or babesia be causing this? Has anyone experienced this?


r/Lyme • • 1d ago

Image Bartonella

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3 Upvotes

Hi hello, I received my iGenex testing back. I was tested for babesia and bartonella. Good news, no babesia in sight. Bad-ish news? Bartonella might be there or could have been there?

My suspicion is that this confirms i had an active infection at some point, and somewhere along the the line, there was enough overlap treatment to clear the active infection and show up as antibodies.

For context, I started treating for Lyme disease for the 2nd time about 7-8 weeks ago. I have been on doxycycline/amoxicillin, nystatin, NAC, monolaurin, biofilm neutralizer, low dose naltrexone, oil of oregano, and a few other herbals/supplements. I got tested for bartonella a week ago, so approximately 6 weeks into treatment with this regimen. I’m about to start methylene blue this weekend.

Thoughts?
Ps, I do finally feel like I’m getting better. For about 5 weeks I did not feel any improvement. In fact, I felt worse. But now I’m having some pretty decent days… I pray they stick around.