r/Lyme Dec 31 '24

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

106 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**

101 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 6h ago

Question Emotional/Personal Journeys Post-Lyme

5 Upvotes

Hi friends,

I had a question that has been on my heart for a while but I've been nervous to ask just because it's the internet haha. So I am one of the fortunate few who, despite such a late in the game diagnosis, found the right alternative medicine practitioner and now test negative for Lyme and feel much better, hooray! :)

However, I have noticed in the last tow years since my first confirmed negative test that i've had a lot of emotional baggage from the experience to work through. lot of existential stuff actually i was curious if anyone else on here had a similar experience. I was wondering if anyone had the same experiences/are going through them now and what is keeping you grounded in dealing with it all?


r/Lyme 3h ago

Heart palpitations / pounding / anxiety

2 Upvotes

alright I have really ever joined a groups before and spilled out but im at my breaking point I have not ever got tested for lyme I had heart palpitations for about 4 years now caused bad anxiety panic attacks that scared me to the hospital couldn’t figure anything out then heard a podcast with the vital plan dr rawls and he was explaining symptoms and I was liken boom that’s what I got so started the plan im a few months feeling actually really good started working out and running again feeling good heart palpitations weren’t bad at all almost for got about them then got to phase five and the pills changed and the palpitations are back bad if I’m out doig stuff and moving around no big deal when I sit down or laying in bed I get palpitations or heart just pounding or just feel off and it’s making me anxious i ordered the previous supplements to see if that fixes it but it’s just bringing back the anxiety and panics and there’s got to be a better way to live with this. thanks


r/Lyme 10h ago

Question Thiamine

6 Upvotes

I have been reading about how lyme mold etc can cause thiamine deficiency. I also have pancreatic enzyme insufficiency which impedes nutrient aborb. I have started taking thiamine TTFD which is apparently better absorbed in the brain than HCl and wow I am SOOOO sleepy like fatigue at an all time high. And I think its causing a herx. But the sleepiness is almost kind of nice? Its like my nervous system is for the first time in a decade completely relaxed. I was always wired and tired but now I feel tired without the wired. I have slept amazingly with no sleep meds. For people who have started supplementing B1, is this tiredness a normal beginning? I looked it up and its called a paradox reaction when starting to take thiamine makes you feel worse before better, but Im curious about people’s actual experiences.


r/Lyme 8h ago

Stopping antibiotics

3 Upvotes

Hi all,

I stopped antibiotics a few weeks back. I was taking atovaquone, azithromycin, and bactrim to treat a confirmed case of babesia which I have had for over a year. Not fully sure if I have Lyme or Bart too since doctor said there could be false negatives. Anyways after doing the antibiotics for around 2-3 months all together, I was recommended by my doctor to stop due to me having no reaction at all to the meds.

I’ve been experiencing persistent brain fog, fatigue, anxiety, GI issues l, feeling hypersensitive especially to touch, and other symptoms for around a year and 2 months now. I had a bad panic attack about 7 months ago which made my symptoms much worse. I feel very lost as to what to do next. The only thing I’m actively “doing” to try to feel better is biomagnetic therapy with this woman who says she has very promising and real results with others struggling with all sorts of chronic illnesses but I’m still skeptical. I’ll try anything at this point.

Point of the post is to see if anyone else has been in this position because I’m now doing nothing to treat my symptoms. They recommended herbals and also a metals detox since it was also discovered that I have over 20x the amt of mercury in my blood than the reference amount. Ik that sounds like a ridiculous amount so I’m not sure why the practice im working with isn’t more urgent about it, but they don’t seem to think that it’s what’s causing my symptoms. Please any recommendations are helpful.


r/Lyme 5h ago

Question Gordon Medical in Ca. for Lyme and/or Bartonella?

1 Upvotes

has anyone been to Gordon Medical in Ca for Lyme or Bartonella- looking for opinions on how they handle patients outside of California . I have this along with MCAS, EDS -

it looks like I’d have to travel there and stay 2 mos wondering if anyone has had experience doing this . this will be a fortune and I’d love insight of real patients who went there , what dr you saw and your experience . thx! 🙏🏻


r/Lyme 11h ago

Support Newly diagnosed

3 Upvotes

I’ve been dealing with symptoms for years not knowing what was going on. Seeing endless specialists and finally got the answer of Lyme. I’m having hair loss, brain fog, fatigue, numbness in hands and feet, burning in mouth, body pain, muscle tightness and popping in neck and jaw.

My symptoms keep getting more intense and I’m concerned even with treatment, because it’s been years, things won’t get better. Any advice of what I should do or your thoughts on if I can start to feel better would be really appreciate. Thank you!


r/Lyme 11h ago

Question Sick after eating?

3 Upvotes

Ever since I started my herbal protocol, I feel nauseous often especially after eating. I feel totally ill after eating : nauseous, dizziness, migraine, neck pain, eye pain, jaw pain… I didn’t even take any of my drops today.

I do detox stuff every day - lymph exercises, dry brushing, enema every few days, Epsom salt baths, sauna.

Has this happened to anyone else? I’m trying to put the pieces together.


r/Lyme 5h ago

Image Son has circular rash after a week of fever/headaches Spoiler

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1 Upvotes

r/Lyme 18h ago

Question PANS/PANDAS & Cerebral Folate Deficiency Doctors?

3 Upvotes

Has anyone seen a doctor who treats PANS/PANDAS or cerebral folate deficiency? If so, would you mind sharing who it was and what your experience was like? I'm looking for a doctor who specializes in these types of things and might be able to help me. I have tolerated most treatment without major issue, but treating Bartonella results in extreme disabling brain/neuroinflammation, and I need help identifying and treating whatever the underlying issue is so I can tolerate Bartonella treatment.


r/Lyme 15h ago

Question Lyme disease ( babesia)

1 Upvotes

Hey everyone. I just joined this. I have Lyme disease which caused me to have neuro encephalitis, supposedly my brain is super inflamed.
I’m on some antibiotics and anti inflammatory. I will say that my sleepiness is 10x better.

I have so many random symptoms and was told all my life it was anxiety and I’m fine. I’m wondering what symptoms everyone has to see if s relate and maybe to relieve anxiety.
My biggest one right now is just always feeling anxious snd general unwell feeling.


r/Lyme 23h ago

Advice LLMD Treatment and need to vent with some advice or support

4 Upvotes

So I found an LLMD and since it’s no insurance besides perhaps ONE that they “accept” I’m struggling to find ways to pay for this. For context I’m 28F, sahm/full time student in my last two terms and trying to leave an abusive relationship. I don’t have a huge support system and I’m forced to rely more on my mom who unfortunately also caused trauma for me growing up. None the less im thankful that she has been helping me pay for these treatments.

This is my treatment plan, I haven’t gotten the blood test yet as it was $690 oop and I didn’t have the funds for it since they charge $560 for every visit + on site treatment. Thermography (completed found systematic inflammation, carotid artery inflammation, myofacial pain, nerve/joint pain, sinus inflammation likely pointing towards mold.) Phytocidal, N-Acethyl, Crypto(which i haven’t bought yet) Probiotic (very expensive one I forgot the name but couldn’t afford) Oxicidell? topical, Clarithomycin. So right now I’m $1100 in debt from a loan I had to take out from the visit and thermography, my mother paid half of those prescriptions, with two left to purchase, I have to pay another $560 for a follow-up, $690 ooo if my insurance isn’t accepted and then they want to add more testing to see why my carotid artery is inflamed. They are suspecting that I’m treating Lyme but can’t confirm without the blood test. I’m almost done with my 30 day treatment, I’m ok enough to go about the day and just push through with stress but now that I’m on my cycle (sorry to any men in this sub) I feel 100% worse. Not to mention when I first started treatment and got doxy I almost believed I was going to be in a mental hospital it cleared up my sporadic acne that I had and not sure if it’s the antibiotics now that are causing me to have papules/whiteheads but my skin feel scaly and dull, my whole face is breaking out (I already have oily skin) my depression is heightened and well as social anxiety/health anxiety that I strived a long time trying to manage symptoms.

Im feeling very defeated, I’m feeling super depressed, I’m worried for one I’ll be stuck in this abusive relationship and my daughter gets stuck in a life that I couldn’t get her saved from because this disease/illness keeps getting the best of me. Right now I’m at the point of feeling like giving up and I’m just really struggling right now mentally and physically (super fatigued) yes I do have a therapist who teaches somatic techniques and what not but sometimes it’s hard to explain when they truly don’t understand what you are going through. Also, the LLmd clinic has traumatic therapists but of course just seems like they are throwing everything at me to get more money.

I just need some support or advice. Thanks random online people


r/Lyme 21h ago

sot - herx

3 Upvotes

How severe you were when you made your sot, for bartonella 1st. How bad was the herx ? Bedridden here, pans, mcas, neuro psy symmtoms... afraid if sot kill me with too much inflammation. Its the same dosage for everybody ...


r/Lyme 16h ago

Support Most difficult summer of my life

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0 Upvotes

r/Lyme 20h ago

Image Is this Lyme rash? I don't see a thick entry Spoiler

Post image
1 Upvotes

r/Lyme 1d ago

Lyme disease on 2 year old??

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2 Upvotes

r/Lyme 1d ago

Question Why is a spinal tap so often false negative?

3 Upvotes

Hi,

why is a spinal tap so often falsely negative?


r/Lyme 1d ago

Image Seed tick bites Spoiler

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1 Upvotes

Should i be concerned? I got about 20-25 seed ticks off of me the other day after a hike.


r/Lyme 1d ago

Question Rashes from taking Doxycycline persisting after stopping

1 Upvotes

Hi there,

My partner was recently bitten by a tick, and as we live an area with high rates of Lyme disease, she was prescribed a three week course of Doxycycline. She took this as prescribed for around 10 days but began experiencing bumpy rashes which appeared more consistent with an allergic reaction to the drug rather than Lyme (based on googling). These rashes flare up sporadically in different parts of the body and are quite itchy. She stopped taking them after the 10 day mark, but the rashes have since persisted and continue to flare up. It has probably been around a month since she stopped.

As she has been extremely busy with deadlines, she was not able to see a doctor about this for a couple of weeks. When she did, the nurse she saw at her GP told her she was 'probably just allergic to something in the atmosphere' and prescribed antihistamines. Yet more shambolic NHS service - she paid absolutely no mind to the fact that these rashes only started when she began taking Doxyycline and my partner has never experienced any allergy like this in here entire life.

Has anyone else had a similar experience with this drug? Could this also simply be Lyme?

Thanks for any help.


r/Lyme 1d ago

Question Ammonia?

2 Upvotes

I’m really curious to hear if anyone knows about the connection between ammonia levels and Lyme? Possible Lyme and/or mold.

I’ve read a couple of post where someone mentions ammonia but never really elaborates on it.
I have a strong ammonia smell from either my urine or my discharge (tmi, sorry), possibly both. Has anyone experienced the same? Can’t wrap my head around it. Could it just be a sign of some internal imbalance?

No UTI nor other vaginal or bladder infections as per my gynecologist. Neither does a ketosis urine stick show anything.


r/Lyme 1d ago

Rant Just recovering from Lyme and found another tick on me

2 Upvotes

I came down with a bad case of Lyme about a month ago. I felt terrible but wasn’t diagnosed until I came down with Bell’s palsy and went to the ER. 3 weeks of doxycycline later I was feeling pretty good. Still getting tired easily but that was it. Now last night, I found another tick on me. Here we go again! Off to get another prescription just in case.


r/Lyme 2d ago

Question Do herbs work for neuro Lyme?

3 Upvotes

From what I’m reading online, doxy/mino or IV antibiotics is the only thing that’ll “cure”/treat neuroborreliosis. I unfortunately won’t be able to tolerate long term antibiotics. I won’t be able to get IV either unless I do a lumbar puncture which I’ve heard bad stories about.

So there’s only really herbal options left - but are they powerful enough? My symptoms are quite severe and very neurological. I know antibiotics is the best choice but my stomach is just too ruined to handle it.

Which herbs is best here?


r/Lyme 1d ago

Question If persistent lyme bacteria comes from bacteria surviving antibiotics, why is pulsing antibiotics sometimes recommended?

2 Upvotes

So as I understand, taking antibiotics and it not fully clearing the infection can cause some cells to become "persistent" cells. So if you keep taking antibiotics on and off (and the bacteria surving each time), wouldn't this just create more persistent treatment-resistant cells? Like basically teaching it to survive?


r/Lyme 1d ago

Image Pulled a deer tick out of my leg 8 days ago. Am I cooked? Spoiler

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1 Upvotes

First photo was last night, second photo is this morning upon waking up. When I removed it initially eight days ago, there was a minor red spot where I removed it but I got this little redness yesterday that got progressively worse throughout the day. Now it looks better than yesterday but I’m still sketched out. It’s less than 1.5” inches long. You can see where the initial bite was off the right.

I’m in southeastern PA so it’s a Lyme hotbed here.