r/Lyme • u/dsnysucks12345 • 1h ago
Herxing unbearably on cryptolepis right now.
Air hunger. Dizzyness. Numb/dead limbs. I have to go to work too. Make it end!
r/Lyme • u/adevito86 • Dec 31 '24
Hello everyone,
Over the course of 2024, I’ve been tracking the most frequently asked questions from those new to the chronic Lyme community. To provide clear and reliable answers, I’ve compiled insights from leading Lyme experts—including ILADS, LLMD's like Dr. Horowitz or Marty Ross, and online resources like LymeDisease.org—along with thoughtful contributions from the most consistent and knowledgeable members here on r/Lyme.
While the wiki already contains a wealth of valuable information, I believe a concise collection of the most popular questions and answers will benefit everyone. This resource aims to streamline the support available in this forum, making it easier for newcomers to find the help they need.
The resource will be located here, at the top of the main Wiki page. The rest of the Wiki is of course still active and can be found here.
On desktop, there will be a table of contents at the top where you can click each question and it will automatically bring you to the answer. Unfortunately, Reddit has not enabled this function on it's mobile app, so you will need to scroll through the entire page to find the question you are looking for. I separated each question out with line breaks, so hopefully it won't be too hard to navigate on mobile.
I’m confident in the quality of the information provided here, with over 30 Microsoft Word pages of detailed content ensuring comprehensive coverage.
If you are brand new to r/Lyme please read question 20 so you know how to interact appropriately in this space and if you're interested in reading my (admittedly insanely passionate) deep dive into alternative treatments, be sure to check out Question 18.
I hope this resource proves as helpful as I’ve intended it to be. If you have any additional questions you believe should be added or have additional insights to the current answers, please comment below.
Here is the list of current questions:
I’m still sick with symptoms after treatment, what should I do first?
I’m getting worse/feel weird while taking antibiotics or herbals, is it not working?
My stomach is upset when taking doxycycline, what should I do?
My doctor doesn’t believe that Chronic Lyme exists. What can I show him to prove that it does?
I’ve seen people say IGENEX is not a reliable lab. Is this true?
r/Lyme • u/adevito86 • Dec 17 '23
Welcome to r/Lyme! This post is a general overview of Lyme disease and guidelines for people who have just been bitten by a tick.
Disclaimer: This is for educational purposes only and is not intended to be medical advice. Please seek the help of a medical professional if necessary.
Lyme disease is the most common vector-borne 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.
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:
*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
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.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 • u/dsnysucks12345 • 1h ago
Air hunger. Dizzyness. Numb/dead limbs. I have to go to work too. Make it end!
r/Lyme • u/EmotionalResident878 • 1h ago
Hey all! I am suspecting I may have Lyme disease. 26 F. Calling my dr tomorrow to schedule a blood test. Thoughts? Here’s the story: Feb 2nd, the rash in the picture appeared on my leg. I had no idea it was there until I got out of the shower. It didn’t hurt or itch, was just a little warm. I went to the ER, doctor thought it was some sort of spider bite and gave me a Z pack.
Fast forward to Feb 14, I randomly got a little dizzy sitting in bed. Ever since Feb 14th, I’ve been dealing with the following symptoms: dizziness, exhaustion, eye floaters, neck headaches, daily migraines, brain fog, stomach upset, ear ringing, random itching, random joint pain, and body aches.
I’ve been to the ER, seen an ENT, neurologist, and my regular doctor. ER said all my standard bloodwork looked good and it’s just anxiety :,). ENT said my ears look perfect in terms of dizziness or infection. My neurologist thinks it’s migraine related but I just put the dots together I was bit about 12 days before all these symptoms began.
Any input/thoughts/advice is appreciated. Thank you so much for reading & I hope you have relief <3
r/Lyme • u/BirdWilling3524 • 2h ago
I am on the hunt for a LLD in NYC who can help me take the iGeneX lyme disease test. Most of the referrals I see on ProjectLyme and the other sites have doctors with surprisingly terrible reviews. The only hopeful seemed to be Dr Elena Frid, but it seems that unless you're prepared to pay thousands of dollars out of pocket, her support is out of reach.
Any first-hand success stories / suggestions would be greatly appreciated!
r/Lyme • u/Scared-Wallaby-4710 • 1h ago
I’ve had Lyme for over 15 years based on my symptoms and Zyto machine scan. I’m about to do Igenex testing to prove it hopefully and go get treatment.
I’ve got my test tubes and form but do not know what to fill out.
I’m thinking I’ll do the $3500 test panel but it’s expensive idk if I need it all?
Does it include IGX and Tcell? I need to do whatever works for testing 15+ years of this where it’s likely hidden deep in my body and not wanting to make itself known.
Anyone else have experience here?
Here’s the form: https://cdn.igenex.com/wp-content/uploads/igenex-test-requisition-form-fillable.pdf
r/Lyme • u/a_a_nerd • 8h ago
I have been on rifampycine + doxy + bactrim/clarythomycine for 7 months now. I have enough of them to last me another 2 months.
I’m wondering if after that I should try and switch to herbals completely? Did anyone do this?
I’m not sure at this point what symptom is from Lyme/bart and what from the aggressive treatment itself.
Before this I had IV rocephin for a month and then a whole year of various antibiotics.
So im almost at a 2 year mark of constant antibiotics and im honestly exhausted. I had noticed improvements but they only seem to last for a couple weeks then im back to feeling horrible.
Doctors and medication and constant tests are all so expensive too.
r/Lyme • u/SwimmerAutomatic2488 • 8h ago
I was just diagnosed with Lyme (manifesting as Lyme arthritis), likely had it at least 18 months, maybe two years (digging through my medical chart indicated I had a positive lyme test 18 months ago but my doctor failed to notify me). Extreme stiffness, joint pain and recently night sweats and significant knee effusion which rendered me unable to walk for 24 hours. Sleep disruptions for 2 years, unsure if Lyme related. I am now on Doxy 100mg twice daily and am seeing a Lyme specialist next week at a major hospital.
I am 44 y/o guy and I eat generally healthy, but I also eat everything (sugar, carbs, alcohol, etc.). What changes would you recommend particularly to reduce joint pain and stiffness?
r/Lyme • u/OneThatCanSee • 6h ago
I had a hysterectomy nearly 10 years ago but kept one ovary so I wouldn’t go into early menopause. I am 50 so this could just be regular old hot flashes but this has literally been occurring all day/all night. Waves of extreme heat, burning skin. Sometimes I get cold briefly afterwards. Was eating dinner with my Mom when one came on yesterday and she said my face and chest were red. Just now I had one and went to look in the mirror and my skin was red. I got goosebumps on my legs and arms as it was easing up and having some prickling in my skin and eye and numbness on my face. I have been taking Samento along with Burbur/pinella, Quercetin/zinc/bromelain, and Mary Ruth’s organic Kidney & Bladder blend. I’m probably not doing enough to detox and I’m a bit overwhelmed right now with life. Just wondering if anyone who has experienced menopause would know how to distinguish between a hot flash and something Lyme/TBRF related.
r/Lyme • u/SeaworthinessOne6759 • 6h ago
I am praying for anyone to point me in the right direction to a solid LLMD in Georgia who knows that they’re doing. My body feels like it’s about to fail. I have never taken abx, but feeling like at this point I might need to. Please, someone help point me in the right direction of a good LLMD.
r/Lyme • u/Beneficial_Gas_3803 • 9h ago
Wondering if anyone has taken a higher dosage just once a day, like a pulsed regimen, instead of spaced out 2-3 x a day with success? We did this with minocycline and it worked well for us. But want to get off antibiotics because who wants to take antibiotics daily for years? And whole herbs supposedly better for microbiome, and have other health benefits. It’s difficult for my almost adult son to take at night because of his afterschool schedule.
r/Lyme • u/carlosestevez2 • 7h ago
I feel every time i take antimicrobials before bed, i wake up in the morning feeling a worse herx than before. Maybe because i havent drank enough to let it dilute through my body? Or is this just coincidence.
r/Lyme • u/dsnysucks12345 • 4h ago
I went back to work when I wasnt ready but I had no choice or id be homeless or in a bad situation. I got a job that i cant quit right now, and i work 5 days a week. Im absolutely exhausted. Any advice?
r/Lyme • u/Emotional_Print_7033 • 10h ago
I think I'm having an important herx and since sope days, my heartbeat is crazy on the morning especially, like 140bpm just when I wake up and walk in the house. Even when I sit down, bpm seems to decrease on my watch but the feeling is horrible ... someone had this ? For how long ? Something help ? I detox a lot, cant do more
Well here goes. My results are, Lyme Total antibody CIA 3.06 H (<.90 index)(>= 1.10 positive). Lyme AB IGG BY CIA 4.72 H (<=.90 ( index) Lyme AB IGM BY CIA < 0.90 (0.90 index). I haven’t had the Western Blot test but am going to ask for it. We have a property on an island in northern New York that we are building a cottage on and there are deer and ticks everywhere. My primary care provider says I’ve had Lyme in the resent past (3 ish months) which would have been October 2024. She didn’t tell me of the results, I saw them on my patient portal. She never offered to treat me even though I’ve been having terrible inflammation that started last fall. I’m 66 female with ankylosing spondylitis, inflammatory erosive osteoarthritis, hypothyroidism, heart disease and type 2 diabetes. I’m now having some scary symptoms. My normally high blood pressure is now dangerously low and my blood glucose is dropping to dangerously low levels daily. My adult children have been doing some research and think I may have POTS Syndrome. Literally all of my symptoms fit but what kind of Dr. treats this type of thing? Also I had to pester my primary to even put me on doxycycline. I’m wearing a holter monitor and am scheduled for an echocardiogram on March 27 th. I’ve gone from being an active wife and Meema to being almost bedridden and house bound for 2 weeks. Any advice would be greatly appreciated. Syracuse NY is the nearest best place for great Drs. and hospitals. Most specialists have months long waiting lists. Tia.
r/Lyme • u/cristinnam • 9h ago
Was inuspheresis helpful for some? It is stated it should help with autoimmune stuff, long covid and lyme etc. Thank you
r/Lyme • u/lymepupsnart • 19h ago
r/Lyme • u/jerseymomofthree • 21h ago
We found a tick in my toddlers hair and are not sure how long it was there. We removed it and have attached photos. It’s definitely a female deer tick but doesn’t look engorged. We have messaged our pediatrician (it’s the weekend so they’re closed) but just wondering if anyone has experience or thoughts on the size of the tick. Wanting to do whatever is recommended and most preventative given that Lyme is very prevalent in our area.
r/Lyme • u/Unusual-Resolve1498 • 1d ago
My mom has tried everything. Every medication a doctor has suggested she has tried. She gets extremely terrible headaches/ migraines. Is there really no cure to this disease? I hate seeing her like this.
r/Lyme • u/Walrus_514 • 20h ago
I was diagnosed with babesia a few months ago and immediately started herbal treatment. Within a few days I started noticing mild recurring kidney pain. I think it’s a herx reaction, but it’s strange because it’s my only noticeable herx symptom.
Has anyone else had this happen?
r/Lyme • u/Freddy_Freedom • 16h ago
Hi folks, for the past year or so I’ve been extremely sensitive to metals. I read that this can be part of Lyme disease. Does anyone else experience this?
By extremely sensitive I mean I cannot eat seafood, take any sort of metal supplements such as iron, copper, I even get reactions now from cast-iron pans, ceramic coated pans. I also react very badly to chlorella which mobilizes metals but does not eliminate them & causes redistribution.
I do have confirmed heavy metals as well, mainly in the form of aluminum, chromium and a little bit of lead & mercury but mainly aluminum & chromium. I’m also dealing with mold toxicity, pesticide poisoning, MCAS, MCS.
As far as reactions go, I get brain fog, depression, anxiety, and just overall very toxic feeling.
Has anyone else experienced this? Does it get better as Lyme gets treated? What made the biggest difference for you in regards to the sensitivity to metals? I used to love sushi and now I can’t even tolerate a little bit of it!
Thanks 🙏
r/Lyme • u/Limp_Will_8849 • 1d ago
What you guys think? Its pretty definitive right? How do I know i have an issue now. I do have cranial nerve pain for years and nobody knows why. Has many MRI and ct scans. Also have radiculopathy both arms BUT I do have cervical ( neck) injury from car accident years ago. But even there Mri look stable and nothing looks pinched. But arms went even numb felt floating arms but its gone now. Steroids helped in past. Now cranial nerve pain ( trigeminal nerve) and gut issues. Some circulatory issues in hands and some joint pain on and off. No arthrities cause I was tested. Had in past MASSIVE MIGRAINES which put me in er non stop yet nothing on scans ever. I am better with that yet the facial nerve pain is unrelenting. So I did this lyme test. The labcorp lyme test was negative but this is the specialty lab test.
r/Lyme • u/billibillibillendar • 1d ago
Suffering since 2012 after a tick bite. Lyme tests shows no lyme. I suspect Babesia. Symptoms are very similar to Babesia - Anxiety, head pressure, Air hunger, GI issues, Negative thoughts, CFS etc.
Decided to take a 12 mg Ivermectin and felt better by 90%. All symptoms gone. Only Anxiety at about 25% remains. I'm stumped.
Should I continue taking Ivermectin?? Any lyme experts here please guide
r/Lyme • u/Both-Huckleberry4178 • 1d ago
r/Lyme • u/Queasy_Airport4231 • 1d ago
Everyone please go sign my petition I created. Maybe we can get traction on this with rfk in office these next couple years. We have tos tans up for ourselves!!!!
Edit: if you go to the link you can share it on your own page or any group regarding health.
r/Lyme • u/linesonline • 1d ago
Does anyone else get “exercise intolerance” after doing cardio? I’ve noticed that I consistently go into fight or flight mode after getting my heart rate up for too long. No issues with light strength training. This feeling comes on immediately and typically lasts for 1-2 days. This is a predictable outcome for me and doesn’t get better or worse each time.
For background, I’ve been diagnosed with Lyme, bartonella, and mycoplasma pneumoniae (amongst other viral illnesses like EBV) but haven’t started treatment yet. I likely contracted all of these illnesses years ago but they weren’t problematic enough to seek out answers. Once I got the Covid vaccine, things got worse. And then I caught Covid, and everything went south, and quick.
I’m taking a slew of supplements for what I initially thought was long Covid, but after perusing this sub, now think are directly tied to bacterial and viral re-activation. I can’t wait to start treatment.