r/Lyme Dec 31 '24

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

61 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**

58 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 disease in the United States. It is caused by the bacterium Borrelia burgdorferi and Borrelia mayonii. It is transmitted to humans most often through the bite of infected blacklegged ticks. Recent research has also found Lyme spirochetes in the salivary glands of mosquitoes but more research needs to be done to confirm transmission to humans.

Typical early-stage symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans (more commonly known as the bullseye rash). Please note that 60% of people will NEVER get a rash so you CAN have Lyme even without it. If left untreated, infection can spread to joints, the heart, and the nervous system and cause chronic symptoms. Once it reaches this stage it becomes much harder to eradicate.

What should I do if I was just bit?

1) Test the tick

If you still have the tick, save it and send it in for testing using this link: https://www.tickcheck.com/

This can determine which infections the tick is carrying and can help gauge what treatments you should pursue. Don't stress if you discarded the tick before reading this (most people do), just follow the below guidelines for what to do next.

2) Check for a bullseye rash

Do you think you have a bullseye rash but aren't sure? Review this link to understand the manifestations of the bullseye rash: https://www.reddit.com/r/lyme/wiki/diagnostics/identify/

Important note: A bullseye rash is diagnostic of Lyme, which means if you have a bullseye rash, you have Lyme. No further testing is necessary, and you should immediately begin treatment following the guidelines below.

3) Review the ILADS treatment guidelines

https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Overall Recommendation:

If you were bitten by a blacklegged tick and have no rash and no symptoms, it is still recommended to treat with 20 days of doxycycline (barring any contraindications). Ticks can carry multiple diseases, so it is best to be proactive, even if you feel fine at the current moment. Keep in mind all tick-borne diseases are MUCH easier to treat early and become increasingly more difficult to eradicate as time passes.

If you have a bullseye rash or symptoms such as fatigue, fever or headaches, it is recommended that you receive 4-6 weeks of doxycycline, amoxicillin or cefuroxime.

Understanding the ILADS Evidence Based Treatment Guidelines:

The main reason ILADS created their own guidelines is because the current CDC/IDSA guidelines do not adequately meet patient-centered goals of restoring health and preventing long-term complications. The ILADS guidelines are currently the most reliable evidence based treatment guidelines available according to the leading scientific research. Below you will find a list of shortcomings as to why the CDC and IDSA guidelines are lackluster at best.

Shortcomings of IDSA recommendations:

  1. Inappropriate Reliance on European Data - Despite referencing over 30 sources, the evidence tables that outline preferred treatment agents draw from only six US trials. Moreover, three out of eight tables solely utilize European data, and for the duration of therapy, only two out of five tables are based on US trials. Given significant differences between Borrelia burgdorferi and B. afzelii, the predominant strains in the US and Europe respectively, findings from European trials may not apply universally to US patients.
  2. Insufficient US Data Regarding Duration of Therapy - The IDSA/AAN/ACR treatment recommendation for US patients with EM rashes advises clinicians to prescribe either 10 days of doxycycline or 14 days of either amoxicillin or cefuroxime. However, these recommendations lack sufficient US trial data to support the specified durations. The evidence tables did include a US trial by Wormser et al. evaluating a 10-day doxycycline regimen, where 49% of patients failed to complete the trial. Another US trial assessed a 10-day doxycycline regimen, with a 36% clinical failure rate necessitating retreatment or escalation to ceftriaxone due to disease progression. Strong evidence based medicine guidelines do not allow failure rates above 20%, which raises the question, why are these studies being referenced for the treatment of Lyme? (see references below)*
  3. Lack of Patient-Centered Outcomes - This is probably the most important point. The evidence assessment tables demonstrate that the guidelines authors did not consider critical patient-centered outcomes such as (1) return to pre-Lyme health status, (2) prevention of persistent manifestations of Lyme disease, (3) quality of life improvements (on any validated measure), (4) prevention of EM relapse, (5) and reduction of EM-associated symptoms in their evaluation of the trials. Ultimately the studies were done using outdated non-best practice methods, and were focused on the removal of the EM rash, and not the reduction in overall symptoms, which is what matters most to patients.

*The two poorly produced studies referenced above:

https://www.acpjournals.org/doi/abs/10.7326/0003-4819-138-9-200305060-00005

https://www.amjmed.com/article/0002-9343(92)90270-L/abstract90270-L/abstract)

Evidence Based Guidelines for Initial Therapeutics as well as antibiotic re-treatment for treatment failures

  1. For low risk patients with a solitary EM rash it is advised to receive an absolute minimum of 20 days of treatment with amoxicillin, cefuroxime, or doxycycline. Doxycycline is preferred due to its activity against various tick-transmitted pathogens.
  2. For patients with multiple EM lesions, neurologic symptoms, or severe illness should consider extended therapy duration, as they are at higher risk for long-term treatment failure. 4-6 weeks is recommended.
  3. For patients who continue to experience symptoms after treating, it is recommended to begin re-treatment immediately. Re-treatment was successful in 7 of the 8 US trials for patients who remained symptomatic or experienced relapse post-initial treatment. (see references in the link below)

In conclusion, these recommendations highlight the importance of tailoring treatment duration based on individual risk factors and closely monitoring patient response to ensure effective management of Lyme disease.

For more information and a list of studies used when drafting these guidelines, please see the link below:

https://www.mdpi.com/2079-6382/10/7/754#B15-antibiotics-10-00754

4) Get treatment

The first thing to know about Lyme is that most doctors are woefully under-educated on the proper treatment protocols and have been taught that Lyme is easily treated with a short course of antibiotics. This is not always true and is the reason for the ILADS guideline recommendations above. A 2013 observational study of EM patients treated with 21 days of doxycycline found that 33% had ongoing symptoms at the 6-month endpoint. (see reference below) These people continue to suffer after treatment.

https://link.springer.com/article/10.1007/s11136-012-0126-6

When it comes to treatment, at the very least, you should be able to walk into any urgent care facility, show the doctor your rash (or tell them you had a rash) and immediately receive antibiotics. However, the current CDC guidelines only suggest between 10 days and 3 weeks of Doxycycline and that is all that you are likely to receive.

According to ILADS (International Lyme and Associated Diseases Society) The success rates for treatment of an EM rash were unacceptably low, ranging from 52.2 to 84.4% for regimens that used 20 or fewer days of azithromycin, cefuroxime, doxycycline or amoxicillin/phenoxymethylpenicillin.

This is why it is incredibly important to be your own advocate. You will likely receive pushback from doctors on this, so you need to be firm with your convictions, show them the ILADS guidelines and explain that the risk/reward scale skews very heavily in the favor of using a few additional weeks of antibiotics, especially in cases of severe illness.

It is very likely that a normal doctor will not give you 4-6 weeks of antibiotics. If this happens, it is best to finish your treatment and monitor your symptoms. If you continue to have symptoms after finishing treatment, you are still infected and will need additional treatment. At this point you can either talk to your doctor about prescribing an additional course of doxy, or you will need to find a Lyme literate doctor who will provide you with treatment options.

If you are having trouble finding a doctor who will take your Lyme diagnosis seriously, please review the following link:

https://www.reddit.com/r/lyme/wiki/treatment/doctors/

This provides additional information on how to find Lyme literate medical doctors (LLMD's) who understand the ILADS protocol and the complexity of this disease.

5) Get tested

If you did not see a tick bite or a bullseye rash but have had weird symptoms that sound like possible Lyme, it is best practice to have your doctor order a Lyme test.

Very important: Lyme testing is not definitive. It must be interpreted in the context of symptoms and risk of exposure, and it will not establish whether a Lyme infection is active. The current two-tiered antibody testing standard endorsed by the CDC and IDSA was instituted in the early 1990s, and by their own admission is unreliable during the first 4-6 weeks of infection. This testing was designed to diagnose patients with Lyme arthritis, not neurological, psychiatric, or other manifestations of the disease.

Even if you have had Lyme for months or years without treatment, the tests are still incredibly inaccurate. Please see the following references that explain the unreliability of current Lyme tests:

https://www.globallymealliance.org/blog/when-you-suspect-you-have-lyme-but-your-test-comes-back-negative

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078675/

https://www.lymedisease.org/lyme-sci-testing/

For the best testing available, the following labs are highly recommended:

IGENEX: https://igenex.com/

Vibrant Wellness: https://www.vibrant-wellness.com/test/TickborneDiseases

Galaxy Diagnostics: https://www.galaxydx.com/

Unfortunately most of these tests are not covered by insurance, and can be very expensive if you want to include testing for co-infections. It is often best to start with the standard insurance covered tests from quest/labcorp just because it is cost effective. Even with a low success rate, about 50% of people with Lyme will test positive and this can save you a lot of time and money.

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.

For more information on testing, you can browse the Lyme Wiki here: https://www.reddit.com/r/lyme/wiki/diagnostics/testing/

Additional questions:

If you have any other questions don't be afraid to create a new post explaining your situation and ask for advice. This is an extremely helpful community with a wealth of knowledge about Lyme and its co-infections. Don't be afraid of asking questions if you are confused. Many of us were misdiagnosed and ended up struggling for years afterwards. One of the main purposes of this sub is to prevent that from happening to as many people as possible.


r/Lyme 1h ago

Doxycycline - horrific side effects

Upvotes

Background: Bit by a tick in 2015. Did 3 week doxy cycle after I noticed bullseye. 10 years later, been trying to figure out why I have chronic neck pain and stiffness for the last year or so. Many doctors and specialists later, positive Lyme western blott on 6 bands. Neurologist says it seems my levels are high enough to indicate an active infection.

I have my first appointment with LLD this week, but in the meantime another physician put me on Doxy 100mg 2x a day for 21 days. I’m currently on Day 4. I am actually on vacation in Florida (oops, forgot I can’t go in the sun ☀️ while on Doxy).

I am having absolutely horrendous side effects. Pain eminating from all my muscles and joints, literally ALL of them. Neck especially bad. Cold sweats. My mind and heart racing. Super nauseous as well, had the doctor give me some Ondanestron to help with that, but last night I threw up for an hour straight. Basically had to lay in the shower and shiver on the hot water. Super stiff and painful everywhere. I am usually not one to complain about this kind of stuff. But I am actually a recovered heroin addict (9 years) and these side effects honestly remind me of opiate withdrawal.

For a second last night I was legit worried I got some serious chemical poisoning and considered going to the ER. Luckily did some research on jarisch-herxheimer reaction and found out it’s a thing. Folks that have had this, what helps and how long will I have this reaction? Kind of ruining my vacation.


r/Lyme 32m ago

Question Do I need to go to the ER or is this just herxing from hell?

Upvotes

I'll try to keep this as brief and organized as possible.

Yesterday morning at ~9:00am i took a single capsule of Doctors Best Serrapeptase 120,000SPU

Since then I have had extreme light headedness, dizziness, pressure/pain in neck and base of skull, pressure and ringing in ears, odd tickle at back of throat/post nasal area, tightness in chest, and recurring waves of the above at a higher intensity for 30-90 seconds

I have been monitoring my blood pressure/pulse, it is within normal range.

Yesterday afternoon i took 2 servings of "broken cell wall chollera" and then 2 hours later 3 capsules of "activated charcoal", both of which were an attempt to bind the toxins (assuming all this is a die off reaction)

Upon waking this morning i took one capsule of TUDCA, i have taken it in the past with no ill effects but havent touched it in months because i couldnt tell if it was doing anything. An anon had mentioned i may need to support my liver to deal with this toxin dump so that was the motivation behind taking it. 2 hours after the TUDCA this morning i took another 3 capsules of Activated Charcoal.

I still feel like absolute shit and i'm growing concerned. Any thoughts or advice? The only reason i haven't gone to the ER yet is because im terrified of ending up with a massive bill for thousands of dollars and then REALLY being fucked -_-


r/Lyme 1h ago

Possible Lyme? Spoiler

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Upvotes

I'm from Arizona but went to Michigan July 2024 where I thought I got a bug bite (never saw a tick but it was summer and I had shorts on the whole time). Didn't think much of it but it did look pretty bad. Come October My right knee (leg that had the bite) started aching a bit, I'm 22 so I just thought oh it's nothing it'll go away! Then my left knee also started aching. I've dealt with this knee pain everyday since and it's been very frustrating as It's taken a lot from me and I can't be as active as I once was. December my knee started swelling and about tripled in size but I never had a fall or injury. I've been to two doctors since, got blood work, the fluid tested, X-rays, and an mri. Everything was clear and I was told to start physical therapy and that it's patellofemoral syndrome which I read this can be mistaken for lyme disease! I've also been to a dermatologist for the marks and he keeps brushing it off like it's nothing. I've now been doing PT for 6 weeks and my knees aren't getting any better, my therapist said this isn't normal and it's super weird so she wants me to go see a rheumatologist. This week I got the same exact mark as I did in july. I started to think maybe my knees and these marks have something to do with eachother. This has led me to lyme disease which I've never heard of before! I see a rheumatologist this month and I'm hoping he'll test for it. I'm going to put pictures to see what you guys think?! I just want answers and I have never felt this way about myself/my body before, it's made me so emotional and anxiety filled, so scary! It seems like anything I research about lyme lines up with all of my "symptoms"😅


r/Lyme 1h ago

Still no balance, heavy, weak one month after onset

Upvotes

Started having pots/ministroke like episodes after a root canal procedure end of February. The tooth was extracted one week later, but my decline continues. Was to ER twice, brain ct scan, tests all good. Haven’t been to a neurologist, bc in my country they are all Lyme illiterate. I was hoping I would recover quickly, but nope.

Current persisting symptoms- my head is about to explode with pressure (no pain), extremely stuff neck. Huge imbalance )falling sensation) resulting from the neck/head, bad coordination. Heaviness sensation in all body. Weak hands. All body vibrating,chills.

Pots-symptoms are less thank god, also I don’t get these mini stoke episodes ever night any more. Less hand cramps.

Current treatment- good diet, early in bed. Have been doing mini jogging in spite of my miserable state. I even get to sweat a little. Three times per day Japanese Knotweed/cryptolepis/houtttnyia (currently at 13 drops, increasing). Monolaurin, L-lysine, probiotics, cbd-oil, black seed oil. Magnesium,spirulina at night. Grateful for any insight that it might go away soon to my old (miserable, but not so extreme) state.

In the hindsight I’m angry at myself that I have not been properly treating with herbals since 2020 when it all started, hoping it would go away by itself. Have taken tons of supplements,but sporadically. This shit doesn’t go away by itself.


r/Lyme 19h ago

5 drops and hell breaks loose.

21 Upvotes

I took 5 drops of japanese knotweed and 5 of cryptolepis and I feel like pure hell in my head. I also took a binder a few hours after, which, I think, made me feel even worse. (It was mycopul from researched nutritionals). I have a crazy sense of impending doom, feels like my brain wil stroke, die, pass out, seize, verge, fall apart any time.


r/Lyme 11h ago

Question Anyone have kidney issues from lyme ? Or mold ?

4 Upvotes

r/Lyme 6h ago

Article She Was Tired and Unsteady on Her Feet. Was It Just Age? (free article)

Thumbnail nytimes.com
1 Upvotes

r/Lyme 7h ago

Question Do you guys think it might be Lyme or something else?

1 Upvotes

So long story short I'm a 19 years old male, I never had any real health problems until last August, the day before my 19 birthday my parents noticed that I have some kind of erythema after some bug bite (not big 2cm diameter if I remember correctly, it wasn't growing or itching) near my right knee.
I went to the doctor he gave me antibiotic for 3 days but I felt weak, had mild constant headaches, knees pain for about a month and a half. I also had a little lowered body temperature as well as some random muscle pains, ear pain. 2 times had something you could call a night panic attacks. I did a blood test for lyme dieseas it turn out negative
(IgM 3,7AU/ml (while negative is <10AU/ml) and IgG <5,000AU/ml (while negative is <18AU/ml).
I did the test 8 weeks after the bite.
After the blood test and some medication I started feeling normal, with some ocassional fatigue feelings, like a fever feeling once a week (usually it was on friday) it went like that for a couple of weeks, then I had over a 2 months of feeling completly good. I pretty much forgot about the whole thing.
In December I was biten by a friend's dog in the left knee, but giving he was vaccinated and I met the dog for the first time, he got a little provoked, they were a minor wounds no really blood, it was more like crashing bite and that we had to go cause we were flying to Sweden the next day I didn't go to the doctor.
I felt very good for about 3 next weeks, I had a lot of energy after Christams almost like never before, but then after New Year I started getting twitches, they were very few but enough to get me scared of the rabies of course. Dog was and is still living to this day so there isn't really any chances it could gave me the rabies, but then I get mild fever, sore throat had insomnia for few days, and then the place where it bite me started like itch, burn etc. (now it's gone).
So I got scared a lot ngl, went to the doctor he told me that rabies shouldn't concern me cause the dog is still living.
Then I had times when I felt little better and little worst, didn't have much twitching that time, but they occasionally happened.
Somewhere around middle of February twitches became more common, they usually were pretty much only around the biten place but the slowly progress and now I have this twitching, jerking almost everywhere on my body, they usually appear when I'm sitting or laying down but lately started noticing them even when standing, they sometimes are gone for an hour or two but they always come back (since last 9 weeks), since around that time when I got more twitching I have really bad insomnia.
I also got new symptoms lately which are drooling, random tears in my eyes (this concern me a lot), tingle in my fingers and legs, and sometimes feeling like my right knee is stoping when I walk. I also have problems with the short memory, like forgetting where I put my phone.
I went infectious disease doctor he told me that he thinks that what I have has nothing to do with the dog's bite and gave me a referral to neurologist, so I went she did some quick test like touching your nose etc. and she said that it's likely neurosis. But she gave me a referral for MRI spine cervical which I did this thursday still waiting for the description. She also gave me meds with vitamin B, and something to like calm down and for good sleeping, but I don't really notice anyhing getting better.

Do you think I might have lyme, even though the test came back negative? Or is it rather something else?
Kinda scared it might MS or even ALS. But can the blood test be so wrong? It's seems very unlikely to me.


r/Lyme 7h ago

Image Faint rapid test

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1 Upvotes

After my flu in january I have strange symtoms (rapid heart rate, sleeping problems, leg fatigue, light noise sensitivity) but every docotrs say it just post viral and will go away with time. My symtoms similar to Lyme as well and before I do western blot test I created a rapid test. It show faint line. If i know well faint line is also the sign of positive result. It could be lyme?


r/Lyme 8h ago

Image is this lyme or ringworm? Spoiler

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1 Upvotes

r/Lyme 20h ago

Question How long have y’all been taking herbs?

6 Upvotes

I’ve been taking herbs from Buhner’s core protocol for 4.5 months now. There have been a couple instances where I have tried reducing my dose and the arthritis pain in my hips gets worse. I had been planning on taking them for about a year, but now I’m wondering if it might be a much longer commitment. They really do help with my symptoms. Wondering how long others have been taking herbs, and if folks have plans to stop, or just keep going.


r/Lyme 16h ago

Question How long does it take for Babesia to clear?

3 Upvotes

What can I do to manage the symptoms while I start treatment? My chest pain and breathing have been very off.


r/Lyme 22h ago

Advice Sad mom/ My 7 year old

6 Upvotes

I need help and advice. My 7 year old was diagnosed with Lyme this week. We went to the hospital with a HUGE swollen knee out of no where and rash, so bloodwork says Lyme.

Now what?! He is tired. He is lethargic. He is also naturally a homebody who likes to be alone. But this seems extra. My husband thinks since he is on DOXy he should be getting better but the more I read the more I see how this is a real chronic thing. Tbh I am scared for my boy. Is this going to put a huge detriment on his life ?!

I don’t even know what to do or how to help.


r/Lyme 20h ago

Question Testosterone for female lyme patient?

3 Upvotes

my partner (20F) has hereditary lyme that she got from her mother

(if thats not how it works sorry im using the info i have)

now her brother and sister have it as well and her brother is fine and i know lyme is not only less common in men but i believe less severe (again i could be wrong) because their high testosterone levels dont tank as far as females T levels do

so if my partner were to take T supplements or go under HRT would help some of the symptoms?

(btw their a little gender fluid and we know the affects of HRT will have on their body they dont mind the only thing that stopped them from taking T earlier was the fear of how it would interact with the lyme)

theres not alot of info about supplements and stuff on the internet besides what lyme does to your hormones, i know what it does i wanna fix it lmao. so anyway i was just wondering if anyone could help me out more then a google search please and thx


r/Lyme 16h ago

Image Should I worry? Spoiler

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1 Upvotes

Today I’ve just found a tick latched onto me, I have no clue on how long it’s been there but I’m guessing about 6 days, what should I do to prevent any issues, and does it look alarming? I don’t know if the red marks around is there from me using a tweezer to pull the tick off, or if it’s something serious. Any advice would be greatly appreciated.


r/Lyme 1d ago

Thoughts/suggestions/Sharing protocol

5 Upvotes

Gonna put my protocol here. It’s been helping. Back doing classes and hoping to move back to college by 2026. Little ways to go. Working w llnp. If anybody has suggestions lmk! I have Lyme bart clinical babesia, leaky gut, possible mold toxicity out of that house tho. I’ve been super sensitive to everything and this protocol has been gentler.

Killing agents BLt tincture (Ceanothus americanus (Red Root), Smilax medica (Sarsaparilla), Lomatium dissectum, Eupatorium perfoliatum (Boneset), Dipsacus fullonum (Teasel), Stillingia sylvatica, Juglans nigra (Black Walnut Hulls) A-BAB Re-adding ivermectin

Gut health Arkamensia S-Boulardii Broad spectrum probiotic Nystatin (Antifungal) BPC

Detox Milk thistle Homocysteine supreme Cell core biotoxin binder Glutathione Lots of water and sweating

Future- individual additional herbs, biofilm stuff.


r/Lyme 16h ago

Tick bite 6wks ago

1 Upvotes

My 6yo got a tick bite almost 6 weeks ago. It didn’t produce a ring around it. Her peds said at the time that if a ring developed then he would order labs.

Fast fwd to the last 2 weeks, she’s complaining (randomly) that her wrist hurts, forearm feels like it’s on fire and claims it feels better when she washes/puts cold water on it. Here and there complains her heart is beating fast (even tho she’s been sitting awhile).

I am obv gonna call pediatrician on Monday to discuss but I’m curious to hear from you guys. I attached a picture of it from the day i picked on the bite to make sure all of it was it to today.

Could she have lymes or something caused by the tick bite? Also, the site seems to take forever to heal? less


r/Lyme 17h ago

Image Anyone been in this situation

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1 Upvotes

X - posted. Looking for similar story


r/Lyme 1d ago

Help! How do I treat bartonella if I have a severe dysbiosis, I’m reacting to almost everything

6 Upvotes

Suspecting MCAS. Im reacting to probiotics and antibiotics as well. Reactions make me feel as if I was dying, get yellow undigested stools (sorry for tmi). I also have a systemic candida and lamblia parasite that I tried to treat and apparently my immunity was too weak for.

Tried to rebuild my immunity first by rebuilding my gut and failed.

Tried garlic, worked great first two days and lost tolerance to it. I don’t think it was herx.

Where can I go from now? I’m developing fever in my chest only again, I’m really scared.


r/Lyme 20h ago

Question Experiences with Phyllanthus Niruri/Chanca Piedra

1 Upvotes

About to try it. When first starting does it cause a massive herx?


r/Lyme 1d ago

Question Artemisinin with antibiotics?

2 Upvotes

I'm on mino-azi-rifampicin combo. Can artemisinin be taken when on antibiotics?


r/Lyme 22h ago

Question Is CSA only for babesia?

1 Upvotes

Pretty much what the title says, I'm wondering if it's only for babesia or if it works to help with Lyme disease and bartonella also?


r/Lyme 1d ago

Rant Here is the top plants around 12 commonly used against lyme disease / Borrelia burgdorferi according to this study

25 Upvotes

Hello, it is a repost of a post from 6 months if it can help anyone. Note that the study is done in tubes test and not in humans so it is not guaranteed that it will even reduce possible lyme disease in you.

TL;DR: According to this study, seven plants have a strong activity against Borrelia in vitro(=test tube, not in living beings), the top one is Cryptolepis sanguinolenta(Ghana Quinine) which is the most efficient and the only one to completely eradicate Borrelia, the second is Japanese Knotweed(Polygonum cuspidatum), the others are Juglans nigra, Artemisia annua, Uncaria tomentosa, Cistus incanus, and Scutellaria baicalensis. These seven plants are more effective than two traditionally used antibiotics(doxycycline and cefuroxime).

Hello,

This study has probably been around there, but I repost it for people to see it :)

I'll try to summarize quickly, I have no medical background so check the study yourself to be sure :)

A 2020 study(including researchers from the Department of Molecular Microbiology and Immunology of Johns Hopkins University) : https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2020.00006/full?utm_source=fweb&utm_medium=nblog&utm_campaign=ba-sci-fmed-botanical-lyme-disease named Evaluation of Natural and Botanical Medicines for Activity Against Growing and Non-growing Forms of B. burgdorferi tried differents commonly used plants against lyme disease in vitro, so in tube culture of Borellia and they put differents extracts of the plants. Some even outperforms the antibiotics which were tried as control on these cultures. (you can also check this resume of the study : https://www.frontiersin.org/news/2020/02/21/ethnobotanical-medicine-is-effective-against-the-bacterium-causing-lyme-disease )

The most effective plants are Cryptolepis sanguinolenta(Ghana Quinine) and Japanese Knotweed(Polygonum cuspidatum). They say "In subculture studies, only 1% Cryptolepis sanguinolenta extract caused complete eradication, while doxycycline and cefuroxime and other active herbs could not eradicate B. burgdorferi stationary phase cells as many spirochetes were visible after 21-day subculture". Cryptolepis is the more efficient and the only one to cause a complete eradication.

So the seven plants which were found to have an activity against borrelia are : Cryptolepis sanguinolenta, Polygonum cuspidatum, Juglans nigra, Artemisia annua, Uncaria tomentosa, Cistus incanus, and Scutellaria baicalensis.

The plants they found without activity on Borrelia are: " Stevia rebaudiana, Andrographis paniculata, Grapefruit seed extract, Ashwagandha somnifera, Colloidal silver, Lauricidin, and antimicrobial peptide LL-37, but found they had little or no activity against stationary phase B. burgdorferi cells". They precise that it doesn't necessary means they are not effective on human body, as this study is in vitro "While this current study has identified novel new botanical and natural medicines with in vitro anti-Borrelia activity, it is also notable that many herbs or compounds tested did not show direct anti-Borrelia activity despite the fact that they are widely used, with anecdotal reports of clinical effectiveness, by patients and practitioners in the community setting (https://www.lymedisease.org/mylymedata-alternative-lyme-disease-treatment/) (60). It is important to consider the potential limitations of the in vitro model given that it exists outside of the biological organism. The in vitro model can provide information on direct antimicrobial activity, and while this can be part of the function of botanical and natural medicines, they can also function via additional diverse pathways".

Edit: Another study from 2020(august), also in vitro(thanks to LiveinFIRE for the link) : https://www.biorxiv.org/content/10.1101/2020.08.19.256768v1 concerning not Borellia but Henselae(linked to Cat-scratch disease) which says"We identified five herbal product extracts that had high activity against stationary phase B. henselae at 0.5% (v/v), including Cryptolepis sanguinolenta, Juglans nigra, Polygonum cuspidatum, Scutellaria baicalensis, and Scutellaria barbata. Among them, Cryptolepis sanguinolenta, Juglans nigra, and Polygonum cuspidatum could eradicate all stationary phase B. henselae cells within 7 days at 0.25% (v/v) in drug exposure time-kill assay".

Edit 2: Comment by /u/woodstockbear Lowell Miller describes in his book how he made himself into a human test subject of this same study—-after 42 years with Lyme Disease—-and it totally worked. His book is called “Lyme With A Twist,” and it describes the protocol he used in detail (as things developed he also added a few natural things to the herbs noted above). He is not selling services or other products with this book, just sharing his experiences and healing information. He doesn’t claim it will work for everyone, but…maybe it will…


r/Lyme 1d ago

Waking with cold sweats and palpitations

2 Upvotes

Does anyone else wake up with a racing palpitating heart because of Lyme/bart?

I randomly have these episodes and I just put it down to blood sugar issues but I’m not diabetic. I’m 27 and was exposed to mold for 6 years.


r/Lyme 1d ago

Question Has anyone tried stem cells or exosomes?

2 Upvotes

Has anyone tried stem cells from a (live birth) placenta, or Wharton’s jelly from an umbilical cord? (I am absolutely not talking about embryos.)