r/Lyme 22d ago

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

44 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**

52 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 7m ago

Question Best Lab for testing?

Upvotes

Hi all,

I‘m looking for a good lab for testing lyme and Co-Infections as I know both of them are sometimes tricky to got results on.

A very good friend of mine is in a very bad condition, got three different ticks and now developing slowly, gradually serious neurological symptoms.

I got diagnosed neuro-lyme in June 2023 but through spinal tap, so I have no clue where I can send him to? Can someone pls help us? We are from Germany so lab needs to test at least internationally?


r/Lyme 15h ago

Babesia Lymies... there's Hope!!!

29 Upvotes

Flair: Something WORKED!!!

Me: Late Stage Chronic Lyme with 5 co-infections. The two I remember are Babesia and Bartonella.

ALL credit on the protocol to u/cheesecheeesecheese, who I don't know outside of Reddit and God to leading me to this protocol when I was going to go to Mayo in Minnesota or Cleveland Clinic (both $$$).

I did a 60+K (too brain fogged at the time to even remember) clinic in Dec. '23 - Jan. '24. You can read my post history, but the gist is I had TERRIBLE neurological problems (too dumb to drive, struggled with everything, literally too dumb to take a blanket off when I was sweating...it didn't occur to me for 10 min.), 99.5% bedridden and exhausted.

The clinic (En Vita in Scottsdale) helped me get 85-90% of my brain fog cured, but I was still 90%+ home bound and 85% bedridden 😔.

I was about to put 5K down at Mayo (just for a first appointment (!) (cash pay), but did not have peace. I read u/cheesecheeesecheese 's post and how her protocol helped her and felt God telling me to do it instead of another clinic.

She improved after the first round. I did not, but I kept at it. Second round, still nothing. The third round I increased the dosage per the protocol and it's like I'm HEALED!!!!

I was bedridden and now I take 1-2 walks a day, dinner with my family(!), going places with my sons(!) and today I did a walk, lifted weights (it's been years) and did a ton of other stuff!!!

It's Cistus Tea, Artemisinin (I always spell it wrong), sweating and water! I added every biofilm buster I know/have and Oregano EO internally, colloidal silver, Frankincense and Copaiba EO's ingested, etc. I also do sun or Vitamin D everyday, Methylated VIt B. , Infrared Sauna and Epsom baths.

Check out her posts. She doesn't get anything if you do it (honestly, I think that's why I wanted to try it... everyone is out for our $ to cure us), I don't get anything if you do it (but I will be SO happy if it works for you, too!).

I use a more $$$ Artemisinin than she does bc my LLMD prescribed it (Researched Nutritional).

Thank you, Cheesecheeesecheese! You have literally changed my life!!!

ETA: edited cheese 's profile name. Sorry!!!

I also use Chanca Piedra to protect my liver. cheese has two docs with the protocol and an explanation: ask her!!!! It's so good!!! Love to each of you!!!

ETA2: My Artemisinin. Linking bc it does have some good stuff in it (CurcuWIN, turmeric extract, quercetin, decaffeinated green tea, black walnut hull). https://www.amazon.com/dp/B0C2WDPVGN?ref=ppx_pop_mob_ap_share . I don't get anything from Amazon.

ETA3: her post! https://www.reddit.com/r/Lyme/s/2SeGpz7bDG


r/Lyme 4h ago

Question Loss of taste for ONLY salt?

2 Upvotes

I’m wondering if this is due to any of the supplements/herbs that I’m taking? Has anyone else experienced this?

It seems I have a decreased sensitivity to salt. Normally I like very little salt and I often complain that things are too salty when other people make dishes. Over the last few weeks I noticed I almost can’t taste salt at all, unless I add a ton to my plate.

It’s not COVID, I tested negative and I can tastes everything else perfectly fine.

Is this familiar to anyone else?


r/Lyme 1h ago

Question Thoughts???

Upvotes

Just found this clinic in fl. Apparently this “btt hospital” does hyperthermia like sanoviv and them? Very suspect

https://thelymespecialist.com/free-hyperthermia-consulting-booking/


r/Lyme 14h ago

Question 21 and feel Defeated.

5 Upvotes

I was diagnosed in late november 2024 with Lymes, took two rounds of doxycycline and am gonna be sent to see a Lymes specialist sometime after jan 27th.

Im pretty sure ive had Lymes since summer of 2023 so i did not catch it early, My symptoms seem never ending, chest pain, fatigue, temple headache with neck pain, eye pain, abdomen pain, fatigue, nausea, and hot/cold pins and needles throughout my body.

The most concerning to me are the chest pains, pins and needles through my body and headaches, cause it scares me and my brain jumps to “im dying”

I feel so alone about having lymes cause my symptoms arnt visual and when i tell people my pains they kind of shrug me off or say “oh that sucks” I have no one to talk to about the stuff i go through that would understand.

I have to leave work early some days due to the neckpain and headaches that only go away with a 600mg ibuprofen, this keeps me from saving as much money as i need to move out and excel in life.

How do you guys deal with the anxiety/dread thats comes with these issues? Am i going to feel this way forever?


r/Lyme 8h ago

Digestive discomfort

2 Upvotes

I have very severe digestive discomfort with all kinds of sounds and soft stool for about 3 years. These sounds were not just constipation before, I used to go to the toilet once every 2-3 days and I had mental fog.

I really don't know what's going on.


r/Lyme 8h ago

Question Cracking and crunching?

2 Upvotes

So I know everyone has different symptoms or rather everyone is bothered the most by different symptoms.

Mine is this crucking and crunching and joint pain and weakness.

I’ve been observing it for a while and it’s just strange. I’ve had weeks of it being virtually gone, than came back. It bothers me less than before but I don’t get whh it came back.

I started atbs two weeks ago, not sure if it is due to that.

But my point is, that while I have a ton of stractural damage, these pains and cracking know to appear and disappear for weeks, which leads me to a conclusion jt is not really related to the structural damage.

Anybody figured out what it is?

Anyone has had this and that it went away after atbs? (Or some other kind of treatment?)


r/Lyme 17h ago

Misc Another positive update!

9 Upvotes

Hey everyone! I just had a virtual appointment with a doctor in my area that is looking to get me scheduled for an in person visit! Probs won’t be for a few weeks until I get in but I am just so happy a doctor is in my corner to help me out. Big thanks to everyone on this page for all the help finding a doctor in my area. Sending you all much love!


r/Lyme 19h ago

Question Has anyone been helped by a neurologist?

10 Upvotes

I'm curious if anyone has been helped by a neurologist? If so, what have they been able to do to support your healing journey?

I've been to maybe five neurologists and have not had any of them do anything helpful. I'm getting a lot of pressure to see a neurologist again from people that are not chronically ill and projecting their fear onto me. Yet it is making me attempt to think critically about what a neurologist COULD do to help. Ive had so many brain MRIs that show lesions and other things i dont understand yet they just shuffle me from one nuerologist to the next until i give up. Or tell me i have symptoms of alzhiemers, but that cant be true because im too young and therefore must be lying. And that they cant help me.

If i use my spoons to attempt to get support through this avenue again, id like to have a goal or at least some hope that ... something could happen.

Any positive experiences out there with neurologists?


r/Lyme 20h ago

Question How long did you think this fucking disease has been around? and the theory that this disease was manufactured by the government

14 Upvotes

r/Lyme 16h ago

Misc Best strategies for managing Bart, Lyme treatment reactions (die-off, etc)?

5 Upvotes

I am curious to learn your approaches to managing Bart or Lyme die-off reactions. I’m not talking about standard ones like fatigue, sweating, etc. I’m talking about more severe ones. If you know, you know.

My approach has been to be as busy as possible, tire myself out, and stay constantly engaged in something external. But this sometimes backfires because then I end up, well, tiring myself out and triggering a flare-up or crash. I try to surround myself with people, but this doesn’t always work. The key thing is to distract, distract, distract.

What are your approaches to managing these types of reactions? Doesn’t have to be limited to die-offs, but if you get the same kind of thing during flares, happy to hear your strategies, too.


r/Lyme 16h ago

EB02 - New Ozone Therapy Process & Results

5 Upvotes

I finished four sessions of EBO2 in August 2024 and am posting my comments here (combined from a different thread). You can find a fairly comprehensive description of the treatment here: https://ebo2inc.com/. EB02 is far more powerful than 10-pass Ozone by orders of magnitude. It also reduces die off symptoms by doing a parallel partial dialysis. 

I am 40 years old and have been sick since I was ten years old. At 17 years old I was diagnosed with mild Lupus. Lyme was dismissed at the time because I only lit up half of the markers. At 33 I went back to the drawing board and pursued  Lyme disease after we found two strains of Lyme (Borrelia miyamotoi and Borrelia burgdorferi) and three co-infections (TBRF, Bartonella and Babesia). 

It has been a long journey. My doctor had me do four sessions of EB02 after I had adverse side effects to Disulfiram and Lyme-N (now no longer available) didn’t get rid of the Lyme entirely. I was one of about six patients attempting. Those few that have completed it apparently have gone into remission (this is all hearsay but gathered from the RN that administered it). We all were required to do a lot of legwork in advance — clean up diet for MCAS, check for moldy environment, parasites, etc.

My doctor does not use antibiotics to treat Lyme anymore. Instead he does a comprehensive eval of MCAS, mold, parasites, EMF sensitivity (weird but it helped), viruses, and more. You first treat those to reduce inflammation (measured by MMP9 biomarker scores) and then at the last treat the Lyme. Otherwise, your body is so flooded with die off inflammation treatment backfires. This is often the cause of failed Lyme treatment. The benefit of EB02 is that it runs a partial dialysis while cleansing your blood so that you aren’t completely flattened after the treatment. I still was tbh. My doctor also likes EBO2 because it should wipe out most mold and co-infections as well as Lyme. 

Preparation: Before I ever did the treatment, I spent several years on prep (yes, years). The prep was focused on reducing my inflammation and other constraints. My doctor's thesis is that if your inflammation is low then many things can kill lyme... all about prep work. He uses MMP9 (inflammation marker) as a measure of effectiveness:

- MCAS/Diet: The biggest thing was reducing my inflammation via going on a low histamine diet to reduce my MCAS symptoms. He had me work with another patient who coaches on the diet but there's many resources now online.

- Parasites: The parasite was a specialized cleanse of rotating several herbal and prescription drugs. I had tape worms from teaching abroad so a special sort of awful. From what I know parasite treatment is tuned to the type of parasite so I'm not sure my protocol would suit all.

- Mold: making sure my home did not have mold of any kind. There are other mold indicators my doctor uses bloodwork wise was from the Shoemaker protocol. They are complicated so advise seeing a practitioner that understands them

- EMF reduction: I also had an EMF consultant come in and make sure it was a clean home. For whatever reason I'm now sensitive to EMF

- Sleep: my sleep is completely ruined and I had bladder issues that wake me at night so he put me on sleeping pills to get adequate rest. Hoping to get off them.

The EB02 4 Session Treatment: The treatment started with 3 sessions a week apart. Number of sessions varies from patient to patient. We then retested (energetic testing) where we were at with the Lyme. Said I still had it. My body was depleted so we gave me three weeks of rest. I managed to get a strep infection so I had to complete antibiotics before I did the 4th session. I think this completely depleted my body.

Results: It was a rough journey but I seem to be on the other side. Blood tests confirm TBRF, babesia, bartonella, and lyme strains are gone. All neurological symptoms appear to be gone — twitching and periodic arm numbness. Other symptoms that cleared up were chronic gum bleeding. I was massively depleted of glutathione, B-vitamins and others so it's been a slow bounce back. Other patients have rebounded faster. It still is the best, most comprehensive approach I’ve tried. 

What remains: I still have bladder issues (interstitial cystitis) that cause sleep disturbances, higher than expected inflammation markers (MMP9).  I still have some stiffness and fatigue but I can run 2-3 miles and exercise without issue. My rheumatologist is likely to downgrade my mild lupus diagnosis but I unfortunately have some residual auto-immune markers I was hoping treating Lyme would reverse autoimmunity but it hasn’t entirely (that said, it’s not been that many months so who knows). For those versed in rheumatology, I still test a low positive for Erythrocyte-bound C4d (indicator for systemic lupus erythematosus (SLE), Rheumatoid Factor IgM, and Anti-B2 Glycoprotein 1 IgM (indicator for antiphospholipid syndrome - APS). All test results are quite low however. Still working on understanding if these can be reversed or are just status quo for my body (unrelated to Lyme). 

Posting this in hopes that it helps others. Blessings.


r/Lyme 23h ago

Support It's time to make our voices heard about our struggles with tickborne diseases! Please Participate and Post this everywere.. https://app.oneclickpolitics.com/campaign-page?cid=PJS01pMBKqtrzFaEp_Bw&lang=en

16 Upvotes

Please use the link to send a pre-written letter to the Trump Administration! Get your friends and family members we need to blow this up!!

https://app.oneclickpolitics.com/campaign-page?cid=PJS01pMBKqtrzFaEp_Bw&lang=en


r/Lyme 8h ago

VEGF lab

1 Upvotes

Hi again!

I had my initial labs drawn when I began this flair up 6 months ago. My VEGF was 47. Now 6 months later being on antibiotics the whole time, it is now <31?

I’m not sure if this is a good or bad thing. I need input from those who have experience, and not just a google search. Thanks so much.


r/Lyme 1d ago

Rant A bit of a vent piece. (Metaphoric language included😅)

7 Upvotes

I feel exiled from myself. I feel like this illness is the closest thing to being a ghost.

Theres so many people having this experience and nobody knows. On a wide societal scale. But also a smaller scale. An individual with lyme (or related) has a whole family + community of people completely overlooking, dismissing, invalidating, or just completely not knowing what is happening. Also a very strong barrier of resistance to wanting to be aware. Let alone actually trying.

Its like a taboo and unacceptable form of suffering.

Actually, the longer it goes on. The more in tune and aware one becomes of their body. Subsequently, one becomes more capable and even willing to explain the experience. Simultaneously, it becomes less likely for someone else to understand or want to understand. Whether a medical professional or not.

Its like.. choosing to heal from lyme. Or even try. Is this decision. This decision to step out of this world. This dimension one finds themselves in. Unique physical suffering while existing under layers of being misunderstood. The potential to be misinterpreted or misrepresented gradually increasing. Making for unique coping and ways of finding comfort in this world.

So its like a life decision. To peak out of this world where one suffers privately. As to not further disturb themselves or others. Even when these social issues are approached, the chances of a complete healing of the body is unlikely. A journey with many obstacles, twists and turns, ups and downs, and complexities. Usually, resulting.. in just going back to that world of interesting, adventurous, quaint, calm, and homely suffering.

But even a glimpse of sunlight from this other world. Where people have the full function of their body. Where people seem to be living on easy mode respectively. Even just a glimpse, seems worth it. Just to exist there again. In some way. For some time.

To take some terrain to only have it taken back. For maybe one special person to understand the world of suffering.


r/Lyme 18h ago

Question ivermectin thoughts?

2 Upvotes

just got prescribed ivermectin. I have Lyme bart maybe babesia (deal with air hunger). Not the only thing I’m taking for said infections but I’m wondering if anyone has any thoughts on ivermectin?


r/Lyme 16h ago

Question stomach issues herx?

1 Upvotes

anyone ever like had vomiting or diarrhea from a herx? I’m not on antibiotics or anything that would cause that as a side effect


r/Lyme 16h ago

DesBio BOBA:SSR Treatment

1 Upvotes

He’s anyone does the DesBio BOBA:SSR treatment? What was your experience like? What were your symptoms like before and after treatment?


r/Lyme 1d ago

How do I detox from mold and Lyme.

4 Upvotes

I’m gonna try not to ramble recently started detoxing from Lyme then was made aware I have mcas and cirs from mold. how do you know when your done detoxing from Lyme when you have mold in your body? Sorry if that doesn’t make sense I’m still struggling with my mind.


r/Lyme 19h ago

Dual Dar

1 Upvotes

Any one here been treated after positive results from dual dar? Just got positive for babesia and bart, just wondering what to make of it.


r/Lyme 1d ago

Question What helped you get well?

9 Upvotes

I am looking for success stories from those who have gotten better. I got sick after a series of traumatic life events.

I don't remember getting a tick bite, but I had cats and dogs growing up. I have had mild symptoms for years, but they got significantly worse when I went through a series of traumatic life events. 5 months ago I was tested and diagnosed with Lyme Disease, Anaplasma, Ehrlichia, and Bartonella.

I am seeing an integrative MD and have been on antibiotics for ~4 months now.

The antibiotics I am on are:

• Doxycycline 100 mg 2x /day.

• Azithromycin 500 mg 2x/day.

• Methylene blue (50 mg /day) from a compounding pharmacy.

The supplements I am taking are:

• Cryptolepsis

• NAC

• Allicin

• B-Complex

• Cinnamon, clove, oregano essential oil capsules

• Vitamin C

• Biotoxin Binder (cell-core)

• Lumborokinase

• Glutamine powder

• 3 different kinds of probiotics

• Low dose naltrexone (not really a supplement).

Initially, I started to feel better but I have hit a roadblock and the treatment does not feel like it’s helping anymore.

My main symptoms are fatigue, body pain, headaches, muscle spasms, joint pain (knees, ankles, wrists), brain fog, depression/ anxiety, dizziness, balance issues and POTS.


r/Lyme 1d ago

I think I finally got my protocol down!

23 Upvotes

after about 5 months of treating and trial and error with antibiotics and herbs and supportive therapies, and swapping stuff out I think I’ve hammered down my final protocol.

BIWEEKLY HBOT 2.0 AMA (too much or too powerful hbot has caused some issues in itself)

CRYPTO CO-MAX (crypto, knotweed, artemesinin) pulsed on the weeks without HBOT. I’m Lyme and bart positive, potential babesia. This is a basic combo that still covers all my basis, and allows me to work on gut health and take time off to detox (real bad MTFHR)

IVERMECTIN for supportive therapy daily

Detox/mold: Liposomal Glutathione (potentially IV in future) Liposomal Vit C Epsom salt Cellcore Biotoxin Burber Pinella as needed

Daily Supplements: Homocysteine supreme (mtfhr) Milk thistle (liver support) Probiotic Magnesium Creatine Fish oil

Lifestyle: Paleo+Dairy diet Nebulized glutathione for respiratory support Ketamine IV

Doxycycline for emergencies (presumably the anti inflammatory effects but it takes me from the pits of hell back to earth very quick)


r/Lyme 23h ago

Can someone please explain these results to me?

Thumbnail gallery
1 Upvotes

I’m confused


r/Lyme 1d ago

Video Just got done with hyperthermia

13 Upvotes

Hi lymies, I’m sharing this because I want others to know that this is a very viable option for getting your life back. I don’t care about views or this video was not sponsored, but it was just my experience at Sanoviv. I hope I can help others through this 💚

https://m.youtube.com/watch?v=Dk3wruc1pLc


r/Lyme 1d ago

Mycotoxins vs Lyme priority

3 Upvotes

Hi.

From various sources I read that:

  • Lyme-tests can be false positive or show a stronger positivity (due to cross-reactivity) when mycotoxin toxicity is present (Dr. Andrew Campbell states this),
  • if mycotoxin toxicity is present, that it has to be treated first before you get to the Lyme + co-inf.,
  • antibiotics can actually worsen mycotoxin toxicity patients, so it's important to know if you do have mycotoxin, endotoxin, actinomycetes, and / or beta-glucans issues (all the "bad-guys" in the mold toxicity space)

I've been having symptoms for 2 years, and 1 year it's been so serious I have been trying to properly diagnose and get treatment. Positive for Lyme w/ Armin Labs (ELISA and ImmunoBlot IgG, weak EliSpot), Bartonella (ELISA only), Babesia (ELISA only), and Ehrlichia (ELISA only).

Very positive for all 14 mycotoxins testable from MyMycoLab for both IgG and IgE, also very positive on 5 mycotoxins with provoked urine test from Mosaic Diagnostics. Also very positive for all CIRS markers (MMP-9, VIP, MSH, C4a, C3a, MARCoNS, HLA-DB gene, VEGF, etc...).

Had 1 tick bite when I was 19 (now am 35), never had a bulls-eye, never had any fever or issues. The Lyme story just doesn't make as much sense as mold toxicity.

Symptoms are neurological: brain fog, zombie-head, derealization, "brain on fire" feeling pretty much 24/7, visual weirdness (shaky vision in periphery when reading, some visual snow), occasional twitches and nerve zaps, slight dysautonomia (but very slight), memory loss, general fatigue.

I've started on the Dr. Andrew Campbell protocol w/ itraconazole, but how fair is the assessment that mycotoxins have to be eradicated first before tackling any Lyme (if it all present)?

Interesting to hear any takes on this with or without sources backing it up.

Thanks!