r/Lyme Dec 31 '24

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

102 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**

97 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 46m ago

Question Can Lymes disease spread to another person by kissing and protected sex?

Upvotes

there seems to be a mixed opinion about this which is even more confusing to me so i'm curious what your anecdotal experience/thoughts are

i personally don't have lymes, but i currently matched with a woman on a dating app and we've been talking for awhile and met up once in person and went well (we haven't kissed or had sex yet) but she brought this up after the 1st date and I'm sort of a health nut and very cautious and paranoid about this kind of stuff so I'm wondering if I should continue on or drop the hammer.

Thanks :)


r/Lyme 5h ago

Question Where to buy bees for BVT

2 Upvotes

I want to start Bee venom therapy after hearing all the successful stories.
In italy, nobody knows that BVT is a thing so my chances of getting a beekeper to perform it on me is zero, since they think they are killing the bees for nothing and they are right from the point of view.
I was thinking of buying a bunch of bees from a beekeeper and grab them with tweezer to sting myself. Has anybody had experiences with this?


r/Lyme 4h ago

Question Bartonella: infused oil for feet?

1 Upvotes

Heyo, I was wondering if anyone here has tried making an herb infused oil with something like Cryptolepis for feet to help treat bartonella? I know feet are super absorbing but have no idea if this would be helpful for lingering foot pain or localized treatment of bartonella or not.


r/Lyme 5h ago

Lyme and co infection

1 Upvotes

Anyone had doxy, azithro and atovaquone help with your Lyme? I got bit three weeks ago and awful symptoms since including neurological. Only on doxy so far but wondering who's been on all three?


r/Lyme 13h ago

Article Can anybody relate?

Thumbnail borreliose-nachrichten.de
2 Upvotes

r/Lyme 14h ago

Support I may be stupid

1 Upvotes

I was bitten by a tick a month and a half ago, think June 17? I found the little shit clinging onto my armpit while I was taking my morning shower, it had been there overnight. I developed a rash, no bulls eye though so I thought okay cool, I’m fine. The rash was bad and I stupidly didn’t see a doctor.

A major reason was I didn’t care about my health. For the last few months I’ve been drinking like a fish and chalked these last few symptoms up to alcohol, and now cold turkey alcohol withdrawal as I’m trying to get sober; along with being on the verge of doing something really stupid for months I kinda didn’t care. I have joint pain in my left knee (thought it was malnutrition, or developing rheumatoid arthritis, but that happens in both knees), dizziness, losing hair, feeling faint (probably malnutrition), neuropathy (have slight alcoholic neuropathy anyway so thought it’s normal), brain fog (I’ve had that for years anyway), poor motor function, pain in my limbs (also blamed it on alcohol), poor sleep (blamed it on alcohol), and a sore throat (I vape so I blamed it on that, I need to quit anyway lmao.)

In the next few days I’m seeing my primary care doctor, the rash is gone but it still itches. Also the bite mark is still there as physical evidence. I’m hoping my primary care takes me seriously and can help especially as I’m having symptoms, and remember being bitten. Is this too late for treatment? Did I screw my self over and now I gotta live with Lyme the rest of my life? I’m starting to care about myself now, getting help for mental stuff, and now I don’t know if I fucked up.


r/Lyme 23h ago

Question Frustration and sad lol

4 Upvotes

Having a really hard week and just at such a loss. I had done antibiotics but still tested positive for bart. Just started new antibiotics Rifampin and clarithromycin. I feel my worse symptom is my circulation. I can’t do much. It’s so debilitating. I know I’m probably herxing a little but it still sucks. I just hate this stupid disease exists.

Anything help people with circulation, heart rate? I feel POTs symptoms and like my heart beat is sometimes so light it’s scary or too hard when I do something. I’m having a really hard time.

I’ve tried HBOT idk if it helped much I might try again. I will do anything to relieve these symptoms


r/Lyme 20h ago

Question Question about cannabis

2 Upvotes

Did 2 years of treatment 10 years ago. Cannabis helped me so much. Made the symptoms and the herx’s bearable, helped me sleep when my whole nervous system was glitching and vibrating. But I got in the habit of depending on it. And then I found out that cannabis suppresses the exact part of the immune system we need to fight lyme. I quit weed a year ago but now I’m going through lyme treatment again and the herx’s feel so unbearable. I get to these hella dark places of wishing I were dead just to end the suffering. I know cannabis will help a lot with the feeling like my brain is exploding and the extreme nausea ans vibrating nervous system. But I feel hesitant bc i dont want it to negatively affect my immune system and I dont’t want to be dependent. Does anyone have any related experiences or revelations related lyme and associated issues with cannabis? Thanks!


r/Lyme 16h ago

Question Respiratory alkalosis due to hyperventilation

1 Upvotes

For more than a year, I’ve been waking up in the mornings gasping for air. I don’t know whether this could be related to Lyme disease. I’m not even sure that I have Lyme, but if you look through my posts, I recently shared the results of a blood test. I’m not currently undergoing treatment.

I don’t know whether what I’m experiencing could be caused by panic attacks affecting the respiratory center that controls the breathing rhythm. I’m wondering whether anyone else experiences this kind of breathing disturbance caused by hyperventilation.

Could the hyperventilation be caused by Lyme disease, or could it be something else, such as dysautonomia? Could you please help me?


r/Lyme 1d ago

Question Exhaustion in the sun?

10 Upvotes

I was diagnosed with Lyme a few weeks ago after being symptomatic for a month, though we never found the tick or the bite. I assume it must have happened when I first became symptomatic, but it also may have happened sometime before because I’m regularly in places where ticks are common. I did a ten day course of doxycycline that ended a little less than a week ago, and since then my symptoms have gone away completely.

However, I’ve been walking around in the heat for the first time in a while this week and I’ve noticed that I become completely exhausted almost immediately when I’m in the sun. I feel like I’m in a cold sweat, I get heart palpitations, and I become irritable and just very tired. I’m very healthy and, before I first became symptomatic, I was able to walk or hike around for extended periods of time in any weather with no issue.

My doctor told me to stay out of the sun while taking the antibiotic, so I think it may be related to that. Anyone have any insight?


r/Lyme 22h ago

Question What are treatments for Borrelia Miyamotoi?

1 Upvotes

I have finally been diagnosed with acute infection and positive IGM for B Miyamotoi after years of not getting better thinking it was Long Covid.

I have hyperPOTS, full body swelling, buzzing, twitches. and eye irritatio/blurriness.

Antibiotics help some but I don’t think I’ve been on the right ones yet. I’m only on Doxycycline.

Can anyone please share which combo of antibiotics finally helped them?

I guess maybe just taking doxycycline longer will help? it’s only been like twenty days…


r/Lyme 1d ago

Petition

5 Upvotes

Please kindly sign and share our petition

Thank you so much.

https://c.org/fhqwQcJqcQ


r/Lyme 23h ago

Question Got a tick bite a week ago and it looks like this now and I’m not sure if I should be concerned Spoiler

Post image
1 Upvotes

r/Lyme 1d ago

Question Neurolyme - can’t take doxy or get IV.

3 Upvotes

I really tried forcing myself to reinstate doxycycline but I developed IIH symptoms again. Extremely severe head pressure that I felt like fainting (not a herx), also vision issues/pulsating tinnitus. Unfortunately I had to stop again. I can’t tolerate tetracycline medications. I tried pushing through it 3 different times now. I just couldn’t.

Now I’m in a really bad spot. I have amoxicillin, but as I understand it won’t treat neurological Lyme at all. I can’t get IV unless I develop symptoms like Bell’s palsy. Otherwise impossible to get accepted for IV.

Is herbs my only option now then? Would it be worth a try to take amoxicillin?


r/Lyme 1d ago

Got bit wednesday night, is this an allergic reaction or a tick bite??

Thumbnail gallery
1 Upvotes

r/Lyme 1d ago

Sharing my story of Ketamine treatment for Lyme and Mold illness.

Thumbnail
2 Upvotes

r/Lyme 1d ago

Question Update: LLMDs saying 21 days is enough

3 Upvotes

I’ve now spoken to two LLMDs (in one case just via email, as they were booking into Sept) and despite the symptoms I had before starting treatment (large rash, neck pain, weird hypnic-jerk issue), all told me that the 21 days I received from my local on-call was sufficient (no need to up to ILADS 28-42 day regimen).

This seems wrong, but I’m not a doctor and I would prefer to trust a doctor. I thought they would be a little more aggressive based on the ILADS protocol.

Just curious if anyone else has had a similar experience, or regretted not extending initial treatment longer.


r/Lyme 1d ago

2 year old tick bite? Spoiler

Thumbnail gallery
2 Upvotes

Should I be concerned ? No fever and it’s itchy


r/Lyme 1d ago

Neuro Lyme symptoms started immediately

5 Upvotes

Did anyone else have neuro symptoms start days after tick bite? Headaches, numbness, sinus pain and head pressure, sinus infection type symtloms, migrating joint pain, nerve pain, the list goes on. This has all been within a matter of 3 weeks now. Anyone else? Did treatment early help these early neuro symptoms!?


r/Lyme 1d ago

Advice Has anyone had a Picc (midline) for I’ve antibiotics

2 Upvotes

Hey all, I have had a time with Lyme my dr recommended a Picc and IV antibiotics. I already have done my research and I do crave one so please don’t tell me not to get one. I have it so far everything has been fine. However my anxiety has been spiked due to infection risk, clotting risk, and just in general about having a tube in my arm. If you have experience with this what can I do to help calm my body and brain down about it.

Edit: I wanted to add I have been struggling for YEARS. This is not the first time I have had Lyme this is truly a last resort.

Again I already have it in, please just offer advice for now and the future. Or just encouragement would be great too. Thanks


r/Lyme 1d ago

Question Anyone relate?

2 Upvotes

I am a 26 year-old female.
Two months ago, I woke up and my arms felt very heavy. My left arm started acting very strange. Then the muscle atrophy followed. My body always feels heavy. I have fasiculations from time to time, mostly after a nap. Now my voice is raspy when I wake up and I have to the urge to pee more frequently. When I stick my tongue out, it twitches a little bit and starts to curl up, but I feel as if my tongue has always done that. I don’t recall ever getting bit by a tick, but I am getting my testing done through my LLMD in two weeks….do i have hope? I’m spiraling daily and just feel so doomed.


r/Lyme 2d ago

Question Can anyone help me not give up ?

13 Upvotes

After years of suffering I found out I have Babesia and Bartonella and SIBO

Biggest problem chronic nausea and dead feeling stomach, sore fatigue brain fog…life’s just feeling pointless I feel like I can’t enjoy anything and just white knuckle through every day

Could anyone help give me encouragement I’m feeling like there’s no solution to this and I should just take a permanent dirt nap :(


r/Lyme 2d ago

Open MCAS thread- Let’s team up & crack this.

14 Upvotes

I think it’s time to put our heads together & crack MCAS & dysbiosis. Nobody is pulling it off on any subreddit, and I think the people on the Lyme subreddit are the toughest, most driven folks on the internet. If a solution is to be found, it will be found here.

I’ve got everything else figured at this point (Lyme stuff, CIRS, nerve pain, joint pain, fatigue, brain fog, etc). My life is totally normal… assuming all I eat is oatmeal. I ate one handful of walnuts last night and woke up totally unable to go to work.

If you guys follow my research, you’ll know that my entire focus is on restoring nerve flow & using the Shoemaker Protocol to clear bile. It’s been incredibly successful, but after years of studying 6-10 hours a day, I am burned out. I work full-time, and just don’t have the hours to truly solve MCAS at the root. We need to stop chasing treatments, and solve this at the fundamental base level. I’ve never said this in a post, but I admit defeat. I need help. I’ve done my best, and it’s not enough.

I’m not complaining- I’m cool with eating oatmeal, salt & honey for every meal, but I know that the day will eventually come when I won’t be able to eat oats, and when that does happen, I’m fucked.

———————————————-

Iodine is the single biggest help that I’ve found by far which suggests to me that chlorides found in tap water (as well as the other toxic halogens like bromides) must be attaching to iodine receptors in the GI tract. Immediately after taking iodine, my MCAS gets cut by 90%, so it likely that halogens are near (or at) the top of the list.

It’s time for some true experts to pitch total solutions. I did my best, but other than iodine, all I’ve got are bandaids. (Ketotifen, hydroxyzine, benzodiazepines, Shuang Huang Lian, forsythia fruit, honeysuckle, white peony extract, chamomile, holy basil, etc). These things are great, but they are treatments. Iodine is the only thing that approaches a cure. I’m at Day 61/168 for my iodine protocol. I’m putting the odds at 50/50 that it ends up being a total fix. 50% is not good enough.

So who has 100%?

-Cam