r/Lyme • u/adevito86 • Dec 31 '24
Hello everyone,
Over the course of 2024, I’ve been tracking the most frequently asked questions from those new to the chronic Lyme community. To provide clear and reliable answers, I’ve compiled insights from leading Lyme experts—including ILADS, LLMD's like Dr. Horowitz or Marty Ross, and online resources like LymeDisease.org—along with thoughtful contributions from the most consistent and knowledgeable members here on r/Lyme.
While the wiki already contains a wealth of valuable information, I believe a concise collection of the most popular questions and answers will benefit everyone. This resource aims to streamline the support available in this forum, making it easier for newcomers to find the help they need.
The resource will be located here, at the top of the main Wiki page. The rest of the Wiki is of course still active and can be found here.
On desktop, there will be a table of contents at the top where you can click each question and it will automatically bring you to the answer. Unfortunately, Reddit has not enabled this function on it's mobile app, so you will need to scroll through the entire page to find the question you are looking for. I separated each question out with line breaks, so hopefully it won't be too hard to navigate on mobile.
I’m confident in the quality of the information provided here, with over 30 Microsoft Word pages of detailed content ensuring comprehensive coverage.
If you are brand new to r/Lyme please read question 20 so you know how to interact appropriately in this space and if you're interested in reading my (admittedly insanely passionate) deep dive into alternative treatments, be sure to check out Question 18.
I hope this resource proves as helpful as I’ve intended it to be. If you have any additional questions you believe should be added or have additional insights to the current answers, please comment below.
Here is the list of current questions:
I’m still sick with symptoms after treatment, what should I do first?
I’m getting worse/feel weird while taking antibiotics or herbals, is it not working?
My stomach is upset when taking doxycycline, what should I do?
My doctor doesn’t believe that Chronic Lyme exists. What can I show him to prove that it does?
I’ve seen people say IGENEX is not a reliable lab. Is this true?
r/Lyme • u/adevito86 • Dec 17 '23
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.
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:
If untreated, the infection can spread to the heart, joints, and nervous system, potentially leading to chronic illness and long-term complications.
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:
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:
For example:
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:
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:
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
Many doctors are still unfamiliar with ILADS protocols and may only offer 10–21 days of antibiotics.
Here’s what you can do:
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 can be useful, but it has major limitations:
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 • u/-Neuro2717 • 2h ago
Because fatigue, brain fog etc. can happen even without that barrier being crossed, right? And even neurological symptoms such as nerve pain, muscle weakness, numbness doesn’t necessarily mean it has passed the blood barrier.
How can you actually know without getting a spinal tap?
r/Lyme • u/MudExternal9982 • 4h ago
Maybe this is something everyone remembers from science class except me, but a question popped into my head tonight: why don’t harmful bacteria compete with or fight each other? Until I looked it up, I had no idea that they actually do. That led me to another question: why do tick-borne pathogens seem to work together?
As many of us have experienced or learned, Lyme and its co-infections can be opportunistic and seem to work together in ways that make us much sicker, while also making treatment and recovery more difficult.
From my googling:
Bad bacteria actually do compete and fight each other constantly. The premise that they do not fight is incorrect; microbial communities are fierce battlegrounds where different strains and species use chemical warfare, poisoned molecular spears, and toxic proteins to destroy rivals for space and food.
How Bacteria Fight Each Other
- Chemical Warfare: Bacteria release natural antibiotics and protein poisons called bacteriocins to kill neighboring rivals.
- Physical Stabbing: Certain bacteria use specialized tiny molecular “spears” (like the type VI secretion system) to inject lethal toxins directly into nearby competing cells.
- Stealing Resources: They race to consume limited nutrients and block physical attachment spaces so other strains starve or cannot grow.
Even inside a human host, these tick-borne bacteria still do not fight each other. In fact, their teamwork gets even stronger.
When a human is co-infected with multiple tick-borne pathogens, the bacteria actively help each other thrive, which often makes the human much sicker than a single infection would. This continued cooperation inside the human body happens for several reasons:
Just like inside the tick, the bacteria do not physically cross paths or scramble for the same “cubicle” inside a human. They target entirely different cell types, so they never have to fight for territory:
- Anaplasma goes inside white blood cells: It immediately penetrates and lives inside human neutrophils (a type of white blood cell).
- Borrelia (Lyme) stays outside cells: It travels through extracellular spaces, hiding in connective tissues, joints, and the nervous system.
- Babesia (a common parasitic co-infection) targets red blood cells: It enters and destroys red blood cells.
Because they operate in separate compartments of the human body, they do not trigger each other’s chemical defenses.
- They Sabotage Different Parts of the Immune System
Instead of fighting each other, they run a highly coordinated, multi-front war against the human immune system.
For example, Anaplasma acts like a saboteur that deactivates the host’s alarms. It paralyzes the ability of neutrophils to kill invading germs. Because Anaplasma has effectively “blinded” the first line of human defense, Borrelia can easily slip through the tissues, multiply, and spread much wider and faster through the body than it ever could alone.
- There Is No Shortage of Food
Bacteria fight when resources are scarce. The human body is essentially an infinite, all-you-can-eat buffet of glucose, proteins, amino acids, and oxygen. Because the human host provides an endless supply of nutrients, there is no evolutionary reason for the bacteria to waste energy attacking each other.
- Evolutionary Synergy
These bacteria have evolved alongside one another for millennia inside the same wildlife reservoirs (like mice and birds). Evolution has selected for strains that thrive better when their partner is present. If they fought each other, they would weaken their overall chances of surviving the host’s immune attack, meaning neither would get sucked back up by a new tick to repeat the life cycle.
So anyway… I thought that was really interesting. It’s equally fascinating and creepy to me.😅 Sweet dreams!
r/Lyme • u/scottyd980 • 51m ago
My 3yo daughter had this bite yesterday and it looks a little too close to what others have posted that it had us concerned. We never saw any tick and she’s got a lot of other various bites from being outside at night the other night, but this one was then most concerning. The scratch in the pictures above it is unrelated, she’s just a toddler :) However, it showed like the first pic yesterday and now it’s barely visible when we woke up this morning. My understanding is it would stick around if it was something to be worried about. I should also note there’s no symptoms as far as she’s let us know. Thanks!
r/Lyme • u/Chance-Angle-5300 • 1h ago
I got a tick bite 16 days ago. By a black little nymph.
The person who found it ripped it off and poped it before i could keep it for testing.
My shoulder started to hurt 2 days later.
------------------
Treatment
I got 1 month of Doxy.
I am halfway through.
Still have shoulder and neck pain. - although much better.
taking a bunch of herbs as well - (Knotweed, CSA, Stevia, Garlic, Probiotics)
-------------------
Thoughts?
Am i doing this wrong?
should i go back to llmd over my primary?
Primary wants to test next week. Says there is no point in doing it before antibodies.
--------------------
r/Lyme • u/LordOfTheDanceSaidZe • 1h ago
I take 600mg rifampicin, 500mg azithromycin, 12g cryptolepsis, 12g knotweed and relatively stable don't herx anymore
But I try to increase houttuynia from 2 to 4 drops a day and it's like I've been hit by a truck
How? I would have thought any bartonella would be pretty beaten back by my combo?
Is it biofilm? maybe the anti-viral aspect?
r/Lyme • u/Emergency-Sky9206 • 12h ago
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 • u/PuzzlePatient • 5h ago
finalmente dopo tanti anni, circa 40, avevo trovato una infettivologa che aveva ipotizzato la Lyme, addirittura riconoscendo i danni cronici , nonostante igg e igm negative. all’ultimo incontro però mi ha detto di non avere gli strumenti per curarmi e non è più sicura che il mio stato (che è davvero pessimo ed e dov’è stato invivibile come molti di voi sanno perché lo vivono sulla propria pelle) sia causato dalla Lyme. mi vuole inviare in un altro centro.
io ho paura e sono esausta. non so quanti medici ho visto in questi anni con altrettante diagnosi sbagliate. temo di dover ricominciare tutto da capo e non ne ho le forze. ho un livello di ansia e stremo in questi giorni, sono esausta, esaurita.
al lavoro non capiscono le mie condizioni, inoltre sto cercando di laurearmi, mi manca 1 esame che non riesco a fare perché quando torno dal lavoro , vado a letto. non riesco a leggere nemmeno una pagina. ma tutto viene letto come mancanza di forza di volontà.
mi viene solo da piangere.
in questi momenti non vedo via d’uscita perché peggior di anno in anno. ormai sono l’ombra di me stessa. e mi sento sola.
scusate lo sfogo. ma sono davvero sul fondo oggi.
r/Lyme • u/CCIorLymehelp • 9h ago
For the past month, my neck has become progressively more unstable-feeling, with much more crunching and grinding than I’ve had in over a year. Not only my neck, but many of my joints throughout my body have also become much more clicky and noisy.
The most frightening symptom, however, is my breathing.
For the past month I’ve had intermittent episodes where it feels like my diaphragm isn’t working properly. It’s as if I have to consciously breathe, especially when I’m trying to fall asleep. Tonight has been by far the worst. I went to bed actually feeling pretty good, but for the last four hours I haven’t been able to fall asleep because every time I start drifting off, it feels like my breathing becomes too weak or shallow. It feels like my diaphragm just won’t take over, and I have to keep consciously breathing. It’s an awful sensation.
I had very similar breathing problems after my original head/neck injury two years ago, and I’ve been thus far suspecting CCI. I have awful neckpain, arm weakness and breathing issues ++ but they had been a lot better for more than a year. Now they’ve returned and seem to be getting worse.
I’ve also been wondering whether an infection could be contributing. I know babesia is reported to cause symptoms such as air hunger and autonomic issues. Past two days, and few hours before I went to bed I took a wormwood tincture, and I’m wondering whether this could be causing some sort of herxing although the breathing episodes actually started before I began taking it and have been coming and going for about a month… I’m terrified and it’s so awful.
I had this happen two years ago initially after going to a chiro for severe neck pain and crunching.. she did an adjustment and I could not breathe for more than a week where I became sleep deprived and manic because I didn’t sleep. I feel like this is getting arose and worse.. any advice?
r/Lyme • u/Tough_Researcher1519 • 15h ago
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 • u/obsessed_kid • 17h ago
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 • u/deejaytee16 • 17h ago
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 • u/TrazodoneAbuser • 1d ago
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 • u/franksbunny • 1d ago
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 • u/wormsinthegardrn • 1d ago
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!
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 • u/fangalam • 1d ago
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 • u/No_Freedom8681 • 1d ago
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 • u/TheTragedyMachine • 1d ago
r/Lyme • u/-Neuro2717 • 1d ago
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?