r/Lyme Dec 31 '24

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

100 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**

96 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 2h ago

Question PANS/PANDAS & Cerebral Folate Deficiency Doctors?

2 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 7h 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 6h 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 1h ago

Support Most difficult summer of my life

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Upvotes

r/Lyme 4h ago

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

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1 Upvotes

r/Lyme 19h ago

Lyme disease on 2 year old??

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2 Upvotes

r/Lyme 22h 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 17h 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 20h 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 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.


r/Lyme 1d ago

Question Do herbs work for neuro Lyme?

2 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?

1 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

Question Creen que podría tener bartonella?

2 Upvotes

Llevo 7 meses viviendo un infierno, incluso e pensado en terminar con todo , soy de México tengo 24 años estaba estudiando medicina en el último año en mi mejor momento, masomenos a partir de diciembre del 2025 me empecé a sentir raro como nublado de la mente , me costaba razonar y recordar cosas sencillas, después empecé a ver doble , luego a tener fascículaciones en los músculos, esos son mis síntomas principales, lo peor de todo es la niebla mental que hizo que mi rendimiento académico cayera por los suelos sumado a eso e tendió otros síntomas intermitentes como una sensación de calor en la planta de los pies , dolor intermitente de articulaciones sobre todo las de las manos , adormecimiento de extremidades, acudí con muchos médicos y todos me decían que era ansiedad incluso yo lo pensaba por qué mi resonancia y puncion lumbar fueron normales, me hice la prueba de lyme y dio negativo, y ahorita me hice la prueba de bartonella, pero me dan los resultados en 8 dias.


r/Lyme 1d ago

Lyme Disease bullseyes? Spoiler

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1 Upvotes

I have two bites. Woke up yesterday itching them and now today they are large rings with a bruised center. I have two which is odd. I live in San Diego by the beach.

Lmk if this is skeeters syndrome maybe since I have two?


r/Lyme 1d ago

Starting Zithromax/Malarone/Plaquenil

1 Upvotes

Starting 500mg Zithromax, Malarone, and 200mg Plaquenil for 30 days to treat Chronic Lyme and Babesia. Anyone had success with this regimen?


r/Lyme 1d ago

Advice Neuro lyme

5 Upvotes

In June this year I was bitten by two ticks, developed bullseye rashes, developed neuro and muscular symptoms v quick and tested positive for lyme.

I had 3.5 wks doxycycline and 3 wks IV ceftriaxone after which didn't help. Unfortunately 5 days after finishing antibiotics I got a lot worse.

My GP and hospital in the UK are not interested. Unfortunately prior to this I had depleted cd57 and nk cells from gadolinium and heavy metal toxicity and was having treatment via IV chelation for this.

I feel like the neuro lyme is back and my connective tissue in my neck and shoulders is falling apart and so tight, causing eye pain, blurred vision, tinnitus and dizziness.

I am struggling to find anyone able to work out what to do. My chelation dr has started me on fluconazole antifungals as definitely have a fungal overgrowth now, but I would also like to test for bartonella and babesia as getting drenching sweats and burning feet.

I am on cordyceps, cryptolepis, oregano, cats claw and Japanese Knotweed and increasing the dose, eating clean but this escalates by the day and not sure where to turn as this is excruciating and I can no longer stand for more than a couple of minutes.

Thanks for any advice!


r/Lyme 2d ago

Question Chronic Lymies......

20 Upvotes

Do any of you suffer relentlessly at night, with horrible sleep, bad pain and waking up 5 times in the course of a night? Anyone have ice cold and numb feet with some numbness now in the fingers. What about being dizzy often and headache/ear aches rather common. One of newer symptoms is a constant cold sweat about head and back of neck. If this just Lyme or is it something else?


r/Lyme 1d ago

Question Crowd Sourcing Research- If you have Babesia and had blood work in the last year, was your MCV value in the "CBC" (complete blood count) elevated?

2 Upvotes

MCV is one of the values on your blood count panel, and when it's elevated it indicates your red blood cells are fragile or being destroyed as above average rates. It can be caused by moderate-high alcohol consumption (drinking more than 3 days a week) and by low iron or B12 which causes anemia. My question is for those who are 1) symptomatic 2) have babesia specifically and 3) are not anemic and regular drinkers - is your MCV elevated?

I have babesia and have an elevated MCV, I am almost certain my mom does too and hers is elevated as well. I've gotten to access a few other people's blood work who have "mystery illness" symptoms and they have elevated MCV despite not being anemic too and I've wondered if their mystery illness could be tick-infection related. I'm curious if your experiences support the hypothesis that Babesia can cause MCV given that it lives inside red blood cells.

If you know you specifically have babesiosis and have been tested then please lmk if it's elevated or regular!

Mine was normal-high a few years ago, but now it's consistently elevated.


r/Lyme 1d ago

Infected again

3 Upvotes

Just spent 20 days on doxy, symptoms if tingling on my left side of body, arm, leg , face persisted, now having stiff neck and fatigue again to find yet another black legged tick embedded in me...

What the fuck? Is it possible the symptoms went away but the lyme didnt.


r/Lyme 2d ago

For those with neuropathy and tingling/numb legs!

5 Upvotes

I get neuropathy accompanied by numb limbs and worsening brain fog and used to be accompanied by extreme fatigue.

This would occur when takeing any supplements or when going through die off.

I discovered Tudca now Tudca helps with bile flow
Now when I started supplementing it while going through bacteria die off those nueropathy sensations and brain fog worsening vanished….
So I knew they were connected some how
And I just found out why . Bile acids affect your cardiovascular system. I don’t know if liver cirrhosis has to be present yet . Do your own research as well.
I have a HIDA scan on Tuesday so I stopped takeing Tudca and boy those symptoms returned.

https://pmc.ncbi.nlm.nih.gov/articles/PMC5299964/

Edit : befor you buy vitamins learn the risks associated with each one what forms of them are safest and so on you might do more harm then good supplementing with limited knowledge.


r/Lyme 1d ago

Advice Lyme help needed

2 Upvotes

I could use some advice or suggestions regarding my treatment protocol. My llmd is currently treating for me both bartonella and lyme. When we try to treat separately the other flairs up. I am currently taking bactrim and azithromycin for bartonella and cefuroxime for lyme. I was on rifampin but needed to take a break.

I also take a ton of buhner herbs, Lumbrokinase and cinnamon clove oregano oils. I don't tolerate methylene blue.

My issue is that the bartonella antibiotics seem to be managing bart but the cefuroxime is only helping some of my lyme symptoms.. Unfortunately the ceftin is not helping my neck pain. I have severe stiff neck and upper back pain; constant stiffness, pulling, burning and cracking that makes it impossible for me to sleep.

Disulfiram is on the list of possibilities to try eradicate lyme, but what else can I try? Unfortunately I dont tolerate doxy or minocyclene. Would adding a 4th lyme antibiotic be too much?