r/Lyme Dec 31 '24

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

97 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**

99 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 4h ago

Question TMI.. Lyme question for the women!

2 Upvotes

I got bit on Sunday, rash started that night and has continued to grow. Been on doxycycline since last night. ANYWAYS… this is embarrassing to ask and when googled I just got back a random study so heres my weird question… Monday morning I had vaginitis symptoms, and I swear its from the Lyme! I have very few lady parts issues in the past and this does seem like too much of a coincidence if it is not related. Anyone with a similar experience?


r/Lyme 3h ago

Got bit by a tick 4 days ago

1 Upvotes

Hello, I was in Chesapeake VA golfing when I saw a tick on my knee, it was definitely burrowed In me but we’ve only been golfing about an Hour so it couldn’t have been on me for long. My dumb dumb self didn’t take a picture or keep it like I was supposed to but I tried to brush it off, didn’t come off so I had to pull it off. Fast forward to today (4 days later), have had a headache almost all day. Not sure if it’s a regular head ache or if I should be concerned. Should I start a doxycycline treatment? I’m just terrified I see all this stuff about ticks and Alpha Gal syndrome I swear if I become allergic to red meat my life is over. Crazy how a tiny bug can do so much damage.
Edit there’s no bullseye rash however the area does look a little red…


r/Lyme 11h ago

Advice Ongoing neuro symptoms after Lyme treatment — unsure what to think

4 Upvotes

Title: Ongoing neuro symptoms after Lyme treatment — unsure what to think

Hi everyone,

I’m 20 and I’m looking for opinions or similar experiences. I know Reddit can’t diagnose me, but I’m feeling pretty lost and would appreciate thoughts on what could be going on or what I should ask doctors next.

In summer 2024 I started feeling unwell with heavy fatigue and brain fog. I had been in Latvia in May 2024, where there are a lot of ticks, but I don’t remember a definite tick bite.

In August 2024 my mother noticed a large circular rash on my leg. I went to a doctor, but Lyme wasn’t suspected at first. The rash kept getting bigger, and around 6 weeks later I asked my college GP for a Lyme test. I was told it came back positive, but I never got a copy of the result. I was treated with 10 days of doxycycline in November 2024.

After treatment I felt better for about 6 weeks, but around mid-February 2025 symptoms started coming back. My fatigue and brain fog are not as bad as before, but I’ve developed/persisted with neurological-type symptoms.

Current symptoms:

  • Tingling in both feet, comes and goes every day
  • Skin sensitivity, sometimes clothes feel uncomfortable against my skin
  • Feelings of heaviness in different parts of my body, comes and goes
  • Random muscle twitches, comes and goes
  • Buzzing/painful/unusual nerve sensations in different parts of my body, comes and goes
  • Visual snow, especially noticeable against a blue sky
  • A lot of eye floaters
  • Redness at the back of my throat for around a year, sometimes sore in the morning
  • Lymph nodes sometimes noticeable in groin and right side of neck
  • Anxiety/stress from not knowing what’s causing everything

I’ve been seen by infectious diseases more than once. They didn’t think I had ongoing active Lyme and felt some symptoms could be part of recovery, especially since fatigue/brain fog improved.

I also had blood tests in Latvia in 2025. From what I understand, they didn’t show active Lyme. One showed borderline Borrelia IgG, later Lyme results were negative. I also had high EBV VCA IgG and low copper/ceruloplasmin on one test. I had been taking supplements/herbs, including things recommended by a herbal practitioner, so I’m wondering if supplements or low copper could be relevant.

Recently while in Germany, my sensory symptoms got worse and I was admitted to neurology for a few nights. They considered neuroborreliosis and did blood tests, nerve tests and a lumbar puncture. The lumbar puncture didn’t show inflammation, and they didn’t find a clear cause. They suggested pregabalin for the nerve symptoms.

I’ve now seen a neurologist in Ireland. He didn’t give a clear explanation but ordered more bloods and prescribed pregabalin, though he said it may only help symptoms and not the root cause. My GP is also sending me for an MRI and testing for possible stomach/reflux-related issues because of the long-term red throat.

I also have an appointment coming up with a Lyme/infectious disease specialist.

What I’m wondering:

  • Could this still be related to Lyme even if recent blood tests and lumbar puncture don’t show active infection?
  • Could this be post-treatment Lyme symptoms, small fibre neuropathy, nervous-system sensitisation, nutritional deficiency like copper/B12, or something else?
  • Has anyone had symptoms like tingling, buzzing, skin sensitivity, twitching and visual snow after Lyme or another infection?
  • Is pregabalin worth trying at a low dose, or should I wait until more tests/MRI results come back?
  • What should I ask neurology/infectious diseases/GP to check next?

I’m not trying to assume everything is Lyme, but I’m still having symptoms and don’t really know what direction to go in. Any advice or similar experiences would be appreciated.


r/Lyme 5h ago

Image bite on elderly family friend Spoiler

Post image
1 Upvotes

yesterday the older gentleman my husband and i have cut our grass asked me to take a look at his leg (he's had Lyme previously) to see if there was a tick. i affirmed there was no tick, just a small bite mark but insisted on taking a photo in case it was something that needed to be monitored.

i just checked it with Google lens and immediately Google suggested it was likely a tick bite. should i insist he go to the doctor? he's not especially financially stable, but i don't want him to get horrifically sick :(


r/Lyme 18h ago

Question Whose nerve pain has gone away? I need to hear some hope

7 Upvotes

To be honest, I just read some stories on this thread about people who’s body wide nerve pain never has gone away and it’s jsut their life now and I am spiraling about it. Mine has definitely improved, when it flares bad it’s not AS bad as it was last fall when this all started. But hoky shit it still hurts every day. Little spasms everywhere. Throbs, sharp, dull aches, you name it. It’s definitely my nerves acting up.

I’ve always assumed the pain would go away once the infections have been actively treated. Whose pain has gone away? I’ve been treating with herbs for just a few months.


r/Lyme 16h ago

Why do we allow this

3 Upvotes

r/Lyme 21h ago

Image My 5yr old son has contracted Lyme Disease Spoiler

Post image
6 Upvotes

My wife and I noticed what we thought to be a spider bite on the 12th. It looked like it was getting better. Yesterday he developed a fever and today he woke up with this feeling very ill. We immediately took him in and he just started antibiotics.

He contracted it when we were in western New York. We always check for ticks after outdoor hikes so we were perplexed as to how we didn’t notice. The conclusion we came to is that right before we left to go home, he released a salamander that he had caught in the creek nearby the cabin we stayed in. It probably landed on at that point. Thats the worst time it could have happened because from there we drove several hours home and put him to bed when we got home. It’s possible it could have gone unnoticed until late the next day, but we never saw anything.

We both feel very guilty for not noticing. We’re also concerned with any long term effects this might have on him. Im glad we jumped on it quick, but we’re still a bit worried. The rash drew the whole staff in to get a glimpse at the pediatricians office. I guess the deer ticks are rare in my area until you go about 150mi east.

Anyways, i thought id share this here. Thanks for reading.


r/Lyme 12h ago

Question Best Testing Through Insurance?

1 Upvotes

What is the best/most sensitive Lyme + co testing available with insurance (specifically Medicaid)? Looking for experience with any of the following panels, or other labs I didn’t come across.

Quest tick-borne illness panels (Ab or PCR)
Labcorp tick-borne illness panels (Ab or PCR)
ARUP tick-borne illness panels (Ab or PCR)
MAYO Clinic tick-borne illness panels (Ab or PCR)

Don’t come for me, I know none of these are great but I’m unable to work so no income and I’m still waiting on Medicare. I got sick in college at 20 years old (now 25) so I don’t have any financial resources. Planning better testing when Medicare comes through but it could take 1-2 years.

Symptoms include extreme fatigue, brain fog, unexplained weekly fevers, burning headache pain, obscene insomnia/hyper-vigilance, joint and facial rashes, nausea and vomiting (gastroparesis), joint pain, extremely low WBCs (2.0) with abnormal bone marrow biopsy, elevated liver enzymes, tachycardia, and more.

In 2023-2024 I had positive ELISA tests on two dates 90 days apart, and positive IgMs for band 23 and bands 23 + 41 on those same dates. Never any IgGs. I was told this was a negative test but I keep coming back to “is it Lyme”


r/Lyme 13h ago

Help identifying bite and consequences Spoiler

Thumbnail gallery
1 Upvotes

hi, i need help to identify my situation.

on july 5th i found this extremely itchy bite on my leg. By the evening it was huge, and very itchy. i got a cortisone cream the next day, which seemed to help as the swelling and itchiness faded. Around 10 days later a rash appeared around the spot, again very itchy.

on saturday, july 18th, I went to the pharmacy to get another dose of cream, as the bite was red and extremely itchy. I still thought it is an allergic reaction to a bug bite, but the pharmacist recommended me to check it for lyme. worried i went on the morning to the ER where they prescribed penicillin for 3 days. Did blood test on Monday, negative for antibodies. the bite is still kind of pink, not as itchy (but still some itchiness there) and a bit warm touch.

In the first 10 days after the bite I did notice im a bit more tired than usual but i thought it had to do with me being very busy with a packed schedule. I also had a strong headache and a stiff back on some days. but in the past 5-6 days, there were no unusual symptoms or anything suspicious like that.

ive been spiraling ever since. I live in a city in southern germany- i haven’t been to nature or anything like that recently. Nor did i notice being bitten by a tick.

i attached all of the photos. the last one from sunday in the ER.

What do you say? What should I ask my doctor for?

thank you all in advance.


r/Lyme 17h ago

Question looking for a scientist? parasitologist? A BULLDOG OF A DOC!?

2 Upvotes

Does anyone know of an absolute BEAST doctor? I have lyme & all the cos. A parasite issue too BUT I need someone who thinks outside the box (and can run bloodwork) I forever feel like there is a missing link in my case. THANK YOU.


r/Lyme 15h ago

Question Anyone relate?

1 Upvotes

Two months ago, I woke up and both of my arms felt very heavy. Within about three days, my left hand started becoming very hard to use. I would literally reach into a bag of peanuts, and when I would pull my hand out and try to drop them in my mouth, my hands would not release them. Then came the muscle fasciculations, the muscle atrophy, and the very clumsy feet. My legs hurt all the time, my voice is raspy when I wake up in the morning, and my bladder gets full quicker than usual. I am in the process of getting tested through my LLMD. I do not recall getting bit by a tick ever. Anyone experience this but it wasn’t ALS? I think the atrophy and the heaviness of my arms is the scariest. I would like to add that my hands are starting to become easier to use again and my walking has improved here and there.


r/Lyme 16h ago

Image Tick Bite - Should I Be Concerned? Spoiler

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1 Upvotes

Hi all!

I went for a walk in the woods (southern Ontario) on Friday and found this beautiful guy this morning (Tuesday) on my lower back when i was showering. Surprisingly not as fat as I was expecting so not 100% sure when it actually bit me

A friend helped me pull it out and said it looked like a dog tick but I’m too paranoid to trust him. It doesn’t look like the traditional “bullseye“ pattern but I can’t help but fear the light ring around the purple is indicative of something

If it’s helpful, I was bitten about a year ago on top of my head and nothing seemed to come from that.

I’m not feeling any different than I usually do aside from maybe the tiniest bit of soreness (only noticeable when thinking about it) and anxiety.

Any advice would be appreciated. Thank you!


r/Lyme 21h ago

Question Alternating Minocycline and Doxycycline?

2 Upvotes

hello! has anyone trialed alternating between minocycline and doxycycline? I have chronic late stage Lyme and bartonella. I got another tick bite last month and was prescribed 2 weeks of Doxycycline by my PCP and then saw my lyme literate doctor who said we could try Minocycline since I was having neuro symptoms (twitching in face, insomnia, etc). I only made it 5 days on Minocycline. the vertigo was insane and I was super fatigued. but it seemed effective, my facial twitching has gone away. however, it’s been hard to work while taking Minocycline. I drive a lot for work and I’m worried to drive with the side effects from Minocycline. My doctor said she could switch me back to Doxy, but I’m thinking about taking Doxy during the week and Minocycline on weekends. Anyone have any input on that?
thanks!


r/Lyme 1d ago

Question Chronic lyme - inpatient program - Hippocrates Wellness in Palm Beach?

4 Upvotes

Has anyone been to Hippocrates Wellness for treatment for chronic lyme? How was the experience? Is it worth the $? Are the treatments/protocols they provide sustainable for when you leave there? I have chronic neurological lyme disease & co infections and am in a 8 month long flare-up. Being treated with a good integrative doctor, but every day life is getting harder and harder the longer I am sick. Any insight??


r/Lyme 1d ago

Herbal Journey

4 Upvotes

Hello, just a quick update with the herbals I started in February 2026. I’m on Cat’s Claw, Japanese Knotweed, and Burbur Pinella (2ml) of each which is not much. I’ve also added in Chinese Skullcap 20 drops per day. Did anyone experience a hot flushing feeling during treatment? I can be sitting somewhere and all of a sudden a wave of heat will come over me and I will start sweating. I’ve always had the temperature dysregulation with this, but, this is different. Also twitching and irritability. I can deal with all of this for the most part, just wondering what you’ve experienced starting herbals and maybe what I should expect as I increase. Thank you.


r/Lyme 1d ago

Rant I’m done with the woods.

34 Upvotes

I grew up playing in a forest in the Midwest of the USA. It was magical. On a very rare occasion, about once a year, one of us would find a dog tick crawling on us.

25 years later, if you touch a single piece of brush in the same forest, you are nearly guaranteed to get a deer tick on you.

The risk is too high. I’d rather forgo the woods and hiking and the deep outdoors than get a life altering disease like alpha gal or lymes. It’s simply not worth it. I struggled with this for years because I loved the forest and the rural Midwest.

Now? Fuck that. I will happily experience the outdoors via my back yard in my suburban neighborhood where everyone’s lawn is manicured and I’ve never seen a single tick.


r/Lyme 1d ago

Question Is this adequate treatment?

1 Upvotes

First off, I know no one can ever be sure. So I went and had a consultation with Dr. Marty Ross.

I believe I had Lyme disease when I had a bright pink rash show up near my arm pit (July 4th), started feeling fatigued and brain fog, followed by migrating joint pain. My rash also started to spread over my body. I went to Urgent Care on 7/10 and convinced them to give me doxycycline, but because it wasn’t a bullseye rash, they thought it was something else. Each rash has no texture, and grew rather quickly outward. I also communicated the joint pain and fatigue, but the fact I didn’t find a tick on me, they didn’t fully believe me.

So I have been lurking here, reading through people’s experiences. I scheduled an appointment with an LLMD.

The last three days I have been experiencing pins and needles on my hands, toes, and arms when there is a temperature change (me going outside or turning on the AC). My pain is also starting to be in my muscles as well.

So after providing this information to Dr. Mary Ross, he believes I have Lyme with two co-infections (Bartonella and Borrelia). He said the initial dose of doxycycline should have killed off any possible Babesia. He prescribed me more doxycycline (so I have a total of six weeks of treatment). Dr. Ross also said this antibiotic should be enough for the two other infections because he believes this is an acute infection. I am also taking an IGeneX blood test in a week and a half (per his direction, to give the diseases enough time to show up). We have a follow up scheduled in four weeks.

However, I have been down the research rabbit hole and from what I read Doxycycline does not treat Babesia and isn’t enough on its own for Bartonella.

Should I push back and ask to blindly treat these? I would much rather blindly treat these if this means I don’t have way worse symptoms later.

If you have an input or thoughts, it would be greatly appreciated!


r/Lyme 1d ago

Tick bite

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1 Upvotes

r/Lyme 1d ago

Article Tick Called Long Star Tick Allergy causing ability not to breath Tick Called Long Star Tick Allergy causing ability not to breath https://youtu.be/SkxYWrCMgW0?si=xeKmnWnPLAZSx4aU via @YouTube @ElijahRogers889

Thumbnail youtube.com
1 Upvotes

Tick Called Long Star Tick Allergy causing ability not to breath https://youtu.be/SkxYWrCMgW0?si=xeKmnWnPLAZSx4aU via u/YouTube

u/ElijahRogers889


r/Lyme 1d ago

Question Is 21 days of Doxy enough in my situation?

1 Upvotes

Hi,

So i was bitten by a tick and was diagnosed as having lymes due to having a visible EM rash aroundthe bite. Doctor prescribed 3 weeks of doxy and said i could book a blood test 6 weeks after that. This seems to be standard UK protocol according to the NICE guidlines

Have done some reading and I'm starting to wonder whether 3 weeks is sufficient?

I have been feeling tired the last few days but not sure if thats anything to do with lymes. I think it may be due to, (what I belive to be) pill induce esophagits that I managed to get after taking a doxy pill and falling asleep, woke up with bad chest pain and have had trouble eating and sleeping properly since.

For context:

Day 1: noticed a bite, no rash, never saw the tick.

Day 4: EM rash present, no other symptons.

Day 9: GP diagnoses Lymes and prescribes doxy

Day 11: start taking doxy, still no symptoms

Day 29: self inflicted esophagitis

Day 33: doxy complete, no rash, no symptons other feeling tired.

Just wondering if I should be trying to find a way to get more doxy, and if so, how do I go about that in the UK?


r/Lyme 1d ago

Suspect Baylisascaris / Need help

1 Upvotes

Hello.  I developed a number of symptoms after removing a raccoon latrine. I have tested negative for Lyme, Blasto, and Histo, Sarcoidosis and Toxocara. My test for Baylisascaris was rejected because of "insufficient evidence based on clinical assessment". It started with slowly over a few weeks getting cold hands, chills, loss of appetite and leg cramps. My main symptoms now are toxic levels of vitamin D and severe muscle weakness. I also get strong muscle leg cramps whenever I eat foods high in sugar. Unfortunately, I have managed my symptoms really well by taking Celebrex along with SAM-e, MSM and Magnesium. Because of the supplements I am taking, I have managed to get my vitamin D back to normal and same with the muscle weakness. 

Whatever it is I have, my dog has the same timeline. My 14 year old pug has tested positive for toxic levels of vitamin D and has a similar timeline/symptoms to mine. Chills, muscle weakness. The vet has tested for Lyme, Blasto, and Histo and like mine, have all come back negative and doesn't know what to do next. Obviously I am finding this very frustrating both with myself, and my dog.

Test after test is coming back normal. I am a male in my 50s with diabetes that is under control with metformin. Everytime I see a doctor, I have to push for test that usually comes back normal because I'm not a doctor. I was able to get three weeks of Doxycycline but it had no effect and chest X-ray was clear. I feel like I'm making progress by ruling a lot of things out but I just don't know what I should do next. I suspect Baylisascaris but I need 1) a doctor who suspects the same thing and 2) A doctor who will advocate my symptoms to the lab.


r/Lyme 1d ago

Caught early treatment EM

2 Upvotes

Hi,

my dad had a tick in the beginning of the month and immediately when it was removed started doxy, was taking 200mg a day. He should do at least 4 weeks, is that sufficient or what are recommendatios by LLMDs on treating lyme caught this early? He has no symptons, but the rash still isnt completely gone after 19 days. Also is doxy weight dosed? As my dad weights 100kg.


r/Lyme 2d ago

Rife Treatment

17 Upvotes

I’ve read numerous posts about Rife treatment on here, with mixed opinions. Has anyone had success with it for complex chronic illnesses including Lyme/Borrelia, Bartonella and MCAS?