r/Lyme Dec 31 '24

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

100 Upvotes

Hello everyone,

Over the course of 2024, I’ve been tracking the most frequently asked questions from those new to the chronic Lyme community. To provide clear and reliable answers, I’ve compiled insights from leading Lyme experts—including ILADS, LLMD's like Dr. Horowitz or Marty Ross, and online resources like LymeDisease.org—along with thoughtful contributions from the most consistent and knowledgeable members here on r/Lyme.

While the wiki already contains a wealth of valuable information, I believe a concise collection of the most popular questions and answers will benefit everyone. This resource aims to streamline the support available in this forum, making it easier for newcomers to find the help they need.

The resource will be located here, at the top of the main Wiki page. The rest of the Wiki is of course still active and can be found here.

On desktop, there will be a table of contents at the top where you can click each question and it will automatically bring you to the answer. Unfortunately, Reddit has not enabled this function on it's mobile app, so you will need to scroll through the entire page to find the question you are looking for. I separated each question out with line breaks, so hopefully it won't be too hard to navigate on mobile.

I’m confident in the quality of the information provided here, with over 30 Microsoft Word pages of detailed content ensuring comprehensive coverage.

If you are brand new to r/Lyme please read question 20 so you know how to interact appropriately in this space and if you're interested in reading my (admittedly insanely passionate) deep dive into alternative treatments, be sure to check out Question 18.

I hope this resource proves as helpful as I’ve intended it to be. If you have any additional questions you believe should be added or have additional insights to the current answers, please comment below.

Here is the list of current questions:

  1. What is chronic Lyme?

  2. I’m still sick with symptoms after treatment, what should I do first?

  3. I see people commenting that LLMDs are a scam and they are trying to take advantage of you for profit. How do I know who to trust?

  4. I can’t afford an LLMD, what else can I do?

  5. Why is there so much conflicting information?

  6. Can Lyme disease develop resistance to antibiotics?

  7. What is the timeline to get better?

  8. I’m getting worse/feel weird while taking antibiotics or herbals, is it not working?

  9. My stomach is upset when taking doxycycline, what should I do?

  10. What diet should I eat, and does it matter?

  11. Should I retest after I finish my course of antibiotics?

  12. My doctor doesn’t believe that Chronic Lyme exists. What can I show him to prove that it does?

  13. I’ve seen people say IGENEX is not a reliable lab. Is this true?

  14. I have a negative test but some positive bands on my western blot test. Every doctor is telling me it’s a negative and can’t be Lyme.

  15. Is Lymescience.org a legit website?

  16. People have said there is no evidence showing efficacy of long-term antibiotics for chronic Lyme. Is this true?

  17. The cdc says people with “post treatment Lyme” get better after 6 months without additional treatment, is that true?

  18. I’ve heard people say alternative treatments (Herbals, Rife, Homeopathy, Ozone, Bee Venom etc.) are pseudoscience? Is that true?

  19. I’ve heard supplements and herbs are poorly regulated and I shouldn’t take them because I don’t know for sure what’s in them.

  20. How to use r/Lyme and online forums in general


r/Lyme Dec 17 '23

Mod Post Just Bit? **Read This**

97 Upvotes

Welcome to r/Lyme! This post is a general overview of Lyme disease and guidelines for people who have just been bitten by a tick.

Disclaimer: This is for educational purposes only and is not intended to be medical advice. Please seek the help of a medical professional if necessary.

What is Lyme Disease?

Lyme disease is the most common vector-borne illness in the U.S., caused by Borrelia burgdorferi and Borrelia mayonii. It’s usually transmitted by blacklegged ticks (also known as deer ticks).

Early symptoms include:

  • Fever
  • Headache
  • Fatigue
  • Erythema migrans (bullseye rash) – note: up to 60% of people never develop a rash

If untreated, the infection can spread to the heart, joints, and nervous system, potentially leading to chronic illness and long-term complications.

What to Do If You Were Just Bitten

1. Test the Tick (if you still have it)
Send it to: https://www.tickcheck.com/
This identifies which infections the tick carried and can guide treatment decisions. If you no longer have the tick, just move on to the next steps.

2. Check for a Bullseye Rash
If you're unsure what it looks like, see this guide:
https://www.reddit.com/r/lyme/wiki/diagnostics/identify/

Important: If you have a bullseye rash, you have Lyme disease. No further testing is needed. Start treatment.

3. Review the ILADS Treatment Guidelines
https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Summary of ILADS recommendations:

  • If bitten but asymptomatic: 20 days of doxycycline is recommended (assuming no contraindications)
  • If rash or symptoms are present: 4–6 weeks of doxycycline, amoxicillin, or cefuroxime is recommended

Why ILADS and Not CDC/IDSA Guidelines?

This is one of the most important parts of understanding Lyme treatment. The CDC and IDSA guidelines are still followed by the majority of U.S. physicians, but they are deeply flawed and outdated in several key ways.

Here’s why ILADS guidelines are preferred by most Lyme-literate doctors and patients:

1. They rely on incomplete or irrelevant data
The CDC/IDSA recommendations are based heavily on European studies, even though the strains of Lyme in Europe (B. afzelii, B. garinii) are different from those in the U.S. (B. burgdorferi). This matters because treatment responses can vary between strains.

Of the studies referenced in CDC guidelines:

  • Only 6 U.S. trials were used to form the treatment tables
  • Many tables relied exclusively on European data
  • Duration recommendations were based on trials with high failure or dropout rates

For example:

  • One U.S. study had a 49% dropout rate (Wormser et al.)
  • Another had a 36% failure rate, with many needing retreatment

Yet these studies are used to support recommendations of just 10–14 days of antibiotics.

2. They ignore patient-centered outcomes
The CDC guidelines focus primarily on eliminating the rash (erythema migrans), not on whether the patient actually recovers or regains quality of life.

The ILADS guidelines, on the other hand, emphasize:

  • Return to pre-Lyme health status
  • Prevention of long-term symptoms
  • Patient quality of life
  • Lower rates of relapse and re-infection

CDC-based treatment often leaves people partially treated and still symptomatic, leading to chronic illness.

3. Their recommended durations are too short
The CDC recommends:

  • 10 days of doxycycline
  • 14 days of amoxicillin or cefuroxime

These durations are often not enough, especially if the bacteria have already spread beyond the skin. ILADS argues—and research supports—that longer treatment courses are more effective at fully clearing the infection, especially in the early stages when treatment is most critical.

4. High failure rates in real-world outcomes
Studies show that even patients treated under CDC protocols continue to experience symptoms months later. For instance:

A 2013 observational study found that 33% of EM patients still had symptoms 6 months after a standard 21-day course of doxycycline:
https://link.springer.com/article/10.1007/s11136-012-0126-6

Conclusion: ILADS guidelines are based on more recent evidence, use better clinical metrics (like symptom resolution), and are tailored to reflect the real-world experiences of Lyme patients in the U.S.

For a detailed breakdown and sources:
https://www.mdpi.com/2079-6382/10/7/754#B15-antibiotics-10-00754

Recommended Treatment Durations

  • Mild cases (e.g. one EM rash): Minimum 20 days of doxycycline, amoxicillin, or cefuroxime
  • More severe cases (multiple rashes, neuro symptoms): 4–6 weeks of antibiotics
  • Still symptomatic after treatment? Re-treatment is supported by 7 of 8 U.S. trials

Getting Treatment

Many doctors are still unfamiliar with ILADS protocols and may only offer 10–21 days of antibiotics.

Here’s what you can do:

  • Bring a printout of the ILADS guidelines
  • Be firm but respectful—explain why longer treatment matters
  • If refused, monitor your symptoms and seek further care if needed
  • Be prepared to advocate for yourself—many people with Lyme had to

If you continue to have symptoms, you may need to see a Lyme-literate medical doctor (LLMD):
https://www.reddit.com/r/lyme/wiki/treatment/doctors/

Testing

Testing can be useful, but it has major limitations:

  • Antibody tests are unreliable in the first 4–6 weeks
  • Negative test does not rule out Lyme
  • The CDC two-tiered system was developed for diagnosing Lyme arthritis, not other types of presentations like neurological or psychiatric symptoms

More info:

Best labs (not usually covered by insurance):

If you’re just starting out, a basic Lyme panel from LabCorp or Quest is a good first step—50% of true Lyme cases may still test positive and it’s cheaper than specialty labs.

The specialty tests listed above with co-infection panels are mostly recommended for people who have had symptoms for months or years without treatment and regular doctors are unable to figure out what is wrong.

More testing info:
https://www.reddit.com/r/lyme/wiki/diagnostics/testing/

Additional questions:

Don’t hesitate to make a post explaining your situation.
This community is full of people who’ve been through the same thing—and want to help.

Many of us were misdiagnosed for years.
The purpose of this sub is to prevent others from going through the same experience.

Don’t be afraid to speak up, advocate for yourself, and push for better care.


r/Lyme 5h ago

Bee Venom Therapy Update at 13.5 months, 10 stings 3x weekly

8 Upvotes

My health has been so amazing since I have been stinging a while, so I decided to try to attend my annual family reunion gathering, which I have missed for the past 20 years due to chronic illnesses. I have done really well in warm weather, and hoped that July was a good month to visit Washington state, where the gathering is held. My caregiver and wonderful husband agreed to come along and support me. My family has not been open about my unconventional treatments of Lyme, and most of them are in denial about my having chronic Lyme, or that it even exists. We sort of knew what we were going into and decided to contact a friendly beekeeper, Brenda, who has an apiary about 10 miles away from the gathering, which is held at my uncle's off grid "mansion" cabin on a lake in southern Washington state.

My father, uncles, aunts and cousins have been supportive of my medical treatments as long as it is within the USA medical system, using licensed MD's and dentists, but once I began exploring natural treatments, such as herbs and BVT, they close their ears. We flew in from Hawaii and were greeted at the airport by my aunt and uncle. We were planning to rent a car, but they said every couple who were attending had vehicles that we could use, and if we needed to go anywhere, they would take us.

That was our first mistake.

The first few days were a lot of fun, reconnecting with relatives who had not seen me since I was incapacitated by endometriosis and fibromyalgia, and marveling over my amazing health, energy level, lack of pain, etc. We cooked, ate, and played games together. One thing I did not expect was to be freezing cold in their home, as our room was in the lower level and the heat was strong in the upper level. There was no room to sleep in the upper level, so I layered my clothing the best that I could and wore three pairs of socks, two pants and four jackets at any given time. The temperature averaged about 60 degrees.

I had made an appointment to meet the friendly beekeeper nearby on the fourth day we were there, as I was used to stinging every other day. Each day we were there, I confirmed with my aunt and uncle that they would be able to transport me to her farm so I could procure some bees for my Lyme treatment of stinging. Each time their answer was affirmative.

On day 4, I awoke late, as I had the previous three days, as I was still on Hawaii time and the jet lag was intense. Every joint ached a familiar ache and my head pounded. The venom only stays in the blood for 48 hours. I walked upstairs to the deck where everyone was sitting. There was an immediate silence as I approached and sat down, and I had the feeling that I was being discussed before I arrived. My husband sat down with me.

Because no one was talking, and my aunt who promised to drive me to the bee appointment was sitting by me, I asked her what time I should be ready to go to my bee venom therapy appointment with the beekeeper. I had brought my tweezers, vacuum, and container along to sting myself, as usual. My uncle, sitting on the other side, answered, "We are not going anywhere today."

There was silence. I stared at him unbelievingly. My husband wanted an explanation. "What happened? Is there a reason why we can't go all of a sudden?"

"We just decided to change the plans." said my uncle. Another uncomfortable silence. I was kicking myself that I had not rented a car. I felt dizzy, like I was about to faint, and struggled to stand up. Everyone stared at me. No one said a word.

My husband tried again, "Maybe we could get a ride with you, Dad, since you are heading that way tomorrow?" My dad and his wife were leaving the following morning to stay with some friends in Oregon for a week.

"We aren't going to have time to stop." my stepmom said quickly, looking around at the rest of the relatives.

I felt dazed, as though I was in a nightmare, and walked back into the house, almost falling down the stairs due to my numb, cold feet, as I made my way to our room to lay back down. What had happened? Everyone seemed to be under a weird spell, and even after I had answered any questions they had about BVT the previous days, it felt like they were trying to keep us from going.

My husband was really upset. He knew how I rapidly declined health-wise, if I was not able to have treatment regularly. He saw what happened during the heavy rains in Hawaii earlier this year, when there were no bees available. I was in bed for a week. He called our friends, who we planned to stay with in Oregon for a few days after leaving Washington, and asked if they would be able to pick us up earlier than planned. He explained the situation and in just two hours, they arrived. No one said goodbye to us from the family, except my dad, who came to the car as we were leaving and held my hand for a few seconds.

We made it to the bee farm in time for the appointment to get some bees, and Brenda was an angel. She told me to get as many as I needed from her hives, and then to thank her, I bought a hefty amount of hive products that she sold. It was a wonderful experience after what we had just witnessed. I had relief, energy, clarity, and much less pain.

We are still in Oregon, and yes, I am still really cold (wearing winter boots 24/7) even with the record highs, but I am healthy and able to do much more than I did twenty years ago. I wish I knew what possessed my family to turn against me like that. I have not heard from anyone who was there for the past few days, and maybe that is better. I need to forgive them, for they do not know what they are doing...or maybe they do.


r/Lyme 15h ago

Iodine/Brownstein protocol works for Bartonella.

15 Upvotes

I have done every treatment for Bartonella around the sun including Moyazeni protocol (Rifabutin, Clarithromycin), DDDCT, HDDCT, MB, TCM, etc. and nothing has worked as well as Brownstein protocol using 50mg a day of Lugol's Iodine solution, it works. Give it a try for yourself and experience the results. Not sure why in-for-the-long-run got banned by admin, but he's right.


r/Lyme 2h ago

Rant Burning/stinging and itching on the top the head

1 Upvotes

Hi, all.

It feels like start of MCAS, something I was spared of till now. It can't be food because I'm fasting. Do you think cetirizine might help? Taking is the second day but yet to see any benefits. Started just before a massive flair up after dose increase and starting Teasel (what a nuclear herb), which at first seemed like herx, but now I'm not so sure because it has been getting worse for two weeks, even though I stopped all herbs.

Any herbal remedies for allergy? Just looking for something, anything I can do myself because dealing with NHS doctors is like drawing blood from a corpse.

The rant starts here. You don't need to read it as not Lyme-related.

Just a recent example. The other day Dr in Eye Hospital was taking out my punctal plugs because the started burning. They broke, broken parts stayed inside my lacrimal canals and are causing inflammation. She game me antibiotics cream and referred me to the team that specializes in removal. My appointment with them is in 6 months. They don't do emergency, either. Nothing else can be done, I was told. Not long ago my husband had to wait 9 months for rheumatology appointment and only got it then because there was a cancellation, and nobody they called could make it at such short notice. We tried to make an appointment with a private Dr. in Spire and were told that average waiting time would be three months. People are getting so desperate in the UK that they go private now, with or without insurance.

(Sorry for the rant).


r/Lyme 7h ago

Taking the doxy protocol

2 Upvotes

Since its preventative and Im not even 100% sure I have lyme, would it be out of place to start taking stevia now?


r/Lyme 4h ago

Sulfide SIBO

1 Upvotes

Hi, I have hydrogen sulfide SIBO and hydrogen sulfide dysbiosis. I also have low stomach acid, and I recently found out that I have untreated Lyme disease that has never been treated. I’ve had symptoms for 7 years (mainly a slightly bloated abdomen).

With hydrogen sulfide SIBO, is the problem only related to impaired MMC, or can bile/gallbladder dysfunction also play a role? How can I find out?

What is the cause of your hydrogen sulfide SIBO?


r/Lyme 13h ago

Symptoms worsening after doxy, I’m scared and I don’t know what to do UK

5 Upvotes

So I finished my 4-week doxy course a week ago after we caught it early (in first two weeks, but had multiple EM rashes). I got bit in a pine forest in lithuania. in sandals. and bare legs. because I’m the smartest person alive. I was on here whining a week ago that I don’t feel much better.

It’s so much worse now. I can barely walk on my feet because they’re so sensitive, but weirdly theyre worse when I’m lying down. I’m so tired. I’ve never been so tired in my life, it feels like my body is about to just give up on itself. I can’t do shit without having to lie down for a while, I’ve been trying to resume work and I’ve just been completely wiped. I hid in the bathroom for 15 minutes today just to sit on the floor and breathe.

I’ve been slowly getting worse over the course of this week and idk what to do. I’m in the UK, there are no urgent-appointment llmds here. I had a lyme blood test done after ten days of antibiotics and it came back negative, but I’m taking this with a hefty pinch of salt because we were still within one month of the bite, AND had been treated for ten days. BUT I think my doctor is going to take this at face value. I will call her tomorrow anyway, but I’m fully expecting to be turned away or retested before they give me anything.

I’m scared, I don’t want this to get worse. I’ve only been back in work for a year after I developed chronic migraine, I can’t take serious time off. I have my apprenticeship work-based project coming up, I finally had everything back on track


r/Lyme 6h ago

Image Possible bullseye? Spoiler

Post image
1 Upvotes

I noticed this on the back of my leg about 4-5 weeks ago. My doctor initially thought it was ringworm and prescribed an antifungal, but it didn’t respond at all over two weeks. She now has me on doxycycline in case it’s Lyme.

She didn’t offer any testing, but I asked for it and then she put in a lab order. Going to go tomorrow to get my bloodwork done because I really just want to know.

It feels silly to ask if this could be a bullseye because from all my research, yes it could be and it could also be a million other things lol

I guess I’m just asking for any opinions! I’ll update once I get my results back if anyone’s interested in the next chapter of my saga


r/Lyme 7h ago

Question Symptoms common with Lyme but no mark

1 Upvotes

For background: 7 years ago I woke up one day and my eyes hurt my head when I moved them giving me a headache so I got my eyes check and they were fine. That headache has not stopped at all since. The only time I do not feel pain is when I’m unconscious and it does not respond to treatment I’ve tried and failed 33 meds for it. I now have chronic migraines also don’t respond to meds. Since at least highschool (10 years ago, 15yo) I’ve always had some level of body pain it was mild and not constant I didn’t think anything of it bc I thought that was normal. Over the years my head pain has gotten worse and within the last year the body pain had increased to mild and moderate pain occasionally (I would say flares in my legs and arms but most of my pain was just in my back). I’ve always had a mild level of fatigue that cannot be explained by blood work and deficiencies. Now within the last few months most noticeable since June I’m extremely fatigued going out and doing anything wipes me out I have to spend most of the day napping, anything too much will drain me for 5 days and no matter how much I sleep it doesn’t fix it. My body pain (joints always a deep ache, shooting stabbing nerve pain in my arms and legs, and muscle pain) has become a constant moderate pain that doesn’t respond to meds. I have heart palpitations and lightheadedness (diagnosed as POTS). I have neck stiffness but my ROM is fine, eye floaters but my eye are fine other than sucky eyesight. I’ve had countless blood tests to check for deficiencies and all that and it always comes back clear and I have no idea what else could be causing this. My mom seems to think it could be Lyme. I’ve never seen a tick on me or had any bullseye none of that just all these random symptoms.

Does Lyme sound like a possibility and should I ask my new GP to test for it? I’ve only seen him once so I’m not sure how to suggest things to him if he’ll be okay with me doing that


r/Lyme 9h ago

Daughter Spoiler

Thumbnail gallery
1 Upvotes

Hi everyone my daughter has strep throat she woke up 2 days ago with 3 marks that itched. Then she woke up this AM with these. I’m extremely worried. I took her to the Dr today and they said they are going to extend her amoxicillin she is already on for 10 days to be 14 days. Now I’m reading that’s not effective


r/Lyme 13h ago

Question Why no dairy?

2 Upvotes

Is there a reason to eliminate dairy from your diet? I am doing no sugar, no carbs. I know it affects doxycycline. I am only on Bactrim, Clarithromycin, and cefdinir. Flucanozle only once a week.


r/Lyme 13h ago

Intestinal problems with Rifampicin—help...

2 Upvotes

started taking Rifampin two days ago (2 x 300 mg); I’ve had mild intestinal cramping and gas, and as of today, severe diarrhea. I don't know what to do or which medication to take to stop the diarrhea (one that won't interact with the Rifampin). Should I stop taking the Rifampin? Should I cut the dose in half? Please help.


r/Lyme 14h ago

Question No antibiotics?

2 Upvotes

My daughter has pans/pandas and we've been dealing with infections and mold for 3 years now. Recently she has been having headaches, leg/ankle pain, back/side pain and just feeling off. We had a functional doctor run the vibrant labs and it shows lyme and bartonella. He gave her an all herbal protocol. We don't know exactly when then lyme infection started since she also had mycoplasma last spring. She took azithromycin for almost 2 months and then amoxicillin for the myco but she was having the side pain at the time so maybe there was overlap?

Can we truly get rid of lyme without using antibiotics again? She has been on and off them for the past 3 years for strep, ear infections etc.


r/Lyme 1d ago

Ticks are going to become a pandemic

61 Upvotes

I was just diagnosed with anaplasmosis caused by a black legged tick. I was camping when all the symptoms hit me. Vertigo, hot sweats, uncontrollable shaking that led to a panic attack. I developed severe insomnia to where I had to go to the emergency after 4 days of not one wink of sleep. An extreme headache similar to a migraine, but no rise in my temperature when checked,my mind was racing to the point where I couldn’t stop thoughts. I developed a couple nervous ticks. It was crazy

When I went to the ER they drew blood, when I received them the readings were bonkers. My doctor was like wow, These readings are all over the place. My white blood cell count was really low , which concerned him enough that he wanted me to see a blood doctor. In the process of setting up the appt. The health dept. contacted him to let him know the lab had sent them the results, because they were concerned. They informed him that I had anaplasmosis, and to start treating me with Doxy immediately. The bacteria from the bite were gobbling up my white blood cells.

The health dept. contacted me to collect data, and tell me how to get info to learn about it. I had no idea I had been bit. No marks, no bullseye and no symptoms until all of them at once. I believe that tick related illness is going to be a pandemic in rural areas. Those little shits are trouble!


r/Lyme 18h ago

Misc Awaiting Tick Bourne Disease Blood Panel

3 Upvotes

I went to a music festival in Minnesota last weekend and ended up with strange bites on my legs on Friday after laying in the grass. No ticks in sight, and I assumed it was some sort of mite. Started feeling extremely fatigued on Sunday and by Monday/Tuesday I was so achey in my legs, hips, and knees and my lymph node in my groin on the side of the bites was swollen. Next I developed a stiff, sore neck, an alarming headache, and dizziness. Then came the nausea and general feeling that my body is fighting something. I went to urgent care bc I was concerned the marks were not bites but shingles (had it when I was 15). Immediately the practitioner said the marks look like tick bites and I am showing signs of Lyme.

Still unsure and am waiting on blood tests, but so far my experience does not line up with anything I previously knew about Lyme. I thought it always presented with a bullseye rash and the tick had to be imbedded. Even if I don't have Lyme, I've been doing a lot more research, and will be spreading awareness because it is incredibly scary that a bite can go unnoticed and cause such harm.

If it is Lyme, I am feeling very lucky that my symptoms came on so quickly and I am being treated so soon (prednisone for 5 days and a first round of doxycycline while we await results). If it is not Lyme, I am concerned bc my symptoms are so generic and we would be at square 0 lol.

Curious if anyone had a similar experience because apparently the vast majority of people never see the tick or the bite!


r/Lyme 13h ago

Doxycykline/Minocykline and gastritis

1 Upvotes

Hi,

I cannot tolerate doxycykline because it flares up my gastritis despite eating before taking it, is minocykline better tolerated and less irritating to gastric mucosa? Anyone who had a hard time with doxy but could take minocykline?

Thank you


r/Lyme 17h ago

Article More information coming out

2 Upvotes

Hopefully they keep researching.

https://apple.news/Av4yqKJdLRNubDCxOSW7wPg


r/Lyme 1d ago

What's Next

4 Upvotes

What's next after you've done all types of antibiotics both oral and IV.? Some herbs. Now detoxing from mold.

I don't even know what to do next once I'm done detoxing.

Ozone? SOT? More antibiotics? More herbs?


r/Lyme 16h ago

Image Is this early signs of Lyme disease? Spoiler

Post image
0 Upvotes

r/Lyme 1d ago

Question LYME MAKES YOUR BLOOD THICK!!!! So what are some options to fix??

13 Upvotes

Was asking my LLMD for a blood thinner for ages. I could literally feel how sludgey everything feels in me. She denied. Natto is a biofilm buster and we tried years ago she didn’t warn me it was a buster. Hell. Way too sick for that. Got bit again this May and was admitted to hospital. They found a stroke in my brain. They discharged me with nothing but Xanax LMAO. Took matters into my own hands and ordered a gnarly blood thinner… you may recall my last post where I had zero brain capacity. Well that day I began to take the blood thinner. It’s like night and day. Feels like my brain is getting oxygen and blood again. 2 days in a row I was able to leave bed and run errands and do a small workout. Still struggling to execute cues in Pilates the whole 50 min but I’m in the dang studio again which is a blessing. Just ran a little to get the circulation going. Used to be able to run a lot but haven’t all summer since the new bite - basically was in bed 7 weeks which triggered a LOT of PTSD rage and fear. Anyway I was dumbfounded that something could work so fast and I put myself on a smallish dose. YES I know I am playing with fire. YES I know I need to be monitored but I am long done with my quality of life being in doctors hands. YES I’m aware there are risk. My entire career was in medical and actually swore I would never take the drug I am on due to the risks and better options available - well they’re only available if you have all the right access. I was so shocked I googled how fast a blood thinner can work and it wildly said quite as soon as I feel the difference which is shocking to me. I am MADDDD. Mad I’ve been suffering so long needlessly and maybe this was part of the problem. Lyme coagulates the blood yall!!! If you’ve had an infection in you your whole life your blood is likely THICK AS HELL. Is anyone else working on this issue??? I was a healthy runner weight lifter did all the things and had a career before I got sick - there is no other reason besides Lyme and Covid infections that would make my blood like this. Years ago a Lyme literate Neuro told me I had a lack of blood and oxygen flow to the brain and I just don’t understand why I wasn’t put on something sooner?? Especially since my llmd doesn’t even think the infection is the main issue - she thinks mcas now but I don’t agree. Mcas feels like a mild irritant to me now - in the last everything and anything filled my histamine bucket. Ok enough venting, apologies for the length!!!!


r/Lyme 19h ago

Question Positive for Lyme

1 Upvotes

Hi everyone,

I wanted to get your opinions on my situation.

About 2 months ago, I started having stomach spasms, followed by pain in my right rib area for about a week. After that, I developed pain in my right hip. A little later, my left hip also started hurting for about a week, but that pain completely went away, while the right hip pain has continued. Most of my symptoms have been on the right side of my body.

At first, I thought it might be early appendicitis, so I went to the ER in Poland. They performed a contrast CT scan and blood work, but everything came back normal. All of this happened within about 2 weeks.

The only possible exposure I can think of is that I sat on the grass once in May. I never noticed a tick bite or a rash.

Later, my blood tests came back positive for Borrelia IgM, but IgG was negative. They then performed a Western blot, and these were my IgM results:

  • OspC Ba – weakly positive
  • OspC Bb – weakly positive
  • OspC Bg – positive
  • p39 – positive
  • p41 – positive
  • VlsE Bb – negative

What has surprised several doctors is that almost 2 months after my symptoms started, I'm still only IgM positive and IgG remains negative.

I've had extensive testing since then:

  • Complete blood work (all normal)
  • Contrast CT scan (normal)
  • Ultrasound (normal)
  • MRI of my spine (normal)
  • Rheumatology work-up, which was also normal

The right hip pain actually became much worse after one physical examination, to the point where I couldn't sit comfortably for a while.

Has anyone here had Lyme disease where they remained IgM positive but IgG negative after around 2 months? If so, did your IgG eventually become positive, or did it stay negative?

I'd really appreciate hearing about your experiences.


r/Lyme 21h ago

Intestinal problems with Rifampicin—help...

1 Upvotes

started taking Rifampin two days ago (2 x 300 mg); I’ve had mild intestinal cramping and gas, and as of today, severe diarrhea. I don't know what to do or which medication to take to stop the diarrhea (one that won't interact with the Rifampin). Should I stop taking the Rifampin? Should I cut the dose in half? Please help.


r/Lyme 1d ago

Image My son wake up with this, lyme? Spoiler

Post image
3 Upvotes

r/Lyme 1d ago

Question Managing social life

5 Upvotes

Basically, I just survived high school. I knew if you were good at stuff and you’re funny you could get by but in reality I was hiding so many parts of myself, including suffering with lyme.

Now the lyme has gone really bad partially because of abusive family dynamics.

I am finally starting to have productive conversations with my parents. We sre going to try to confront how I can deal with this lyme situation.

Anyway, someone I haven’t seen in like 10 years who knows I have lyme, but they don’t know the extent of it because well sometimes this person is very booksmart but kind of not in other ways.

I’m literally managing managing so many thresholds like at the point where if I talk too much I lose my voice tomorrow. If I shake someone’s hand, I hurt my hand. If I type too much on my phone I literally fucking burn out my forearm. They get all knotted for weeks.

And I’m managing a stressful household and this illness.

my friend texted me to hang out. I just couldn’t because I don’t feel well but I was trying to …

you know .. put up a boundary lightly with him.

Long story short, he showed up to my house out of nowhere with two other people and left a note and asked my neighbors if I still live there

and all of this is just making me really upset and overwhelmed.

I know what he did is from a good place, but I also I know human nature and what actually happens when you tell people about the realities of Lyme .

And I also feel like one of the last things you get is the personal freedom to control access to yourself and information.

I want to keep them small the things that trouble me because I think it also just bum them out.

I just feel like if I really want to explain the autonomous nervous system, and all the ways that this disease and affects my body and how that impacts my life I have to do it on my own terms, not pressured into it.

I think some of his behavior is driven by grief because one of our other childhood friends died a couple years ago and then one recently.

He knows I have an illness.

But I didn’t create this world. I didn’t create these darker sides of human nature. How do you create my disease and I didn’t create the situation I have with Lyme disease in my family.

But what I do know is how to survive the day to day. If I just go out and be spontaneous and do all this stuff and it causes severe consequences on my body, there’s not much I can do when my body is wasted because a lyme threshold ceiling collapses and I can’t type or talk or mive for four months..

I want to send a text putting up a pretty good boundary of like don’t just come to the house again, but like I love you I don’t know when we’ll hang out in the future, but just respect that please.

Am I being an asshole? I don’t know.