Last Updated on February 17, 2023 by Lori Geurin
Lyme disease is a hot topic in the U.S. and around the world. This is likely because Lyme is spreading at an alarming rate due to climate changes and other factors. The incidence of Lyme disease in the United States has nearly doubled since 1991. In 2018, there were 7.21 cases per 100,000 people (compared to 3.74 reported cases).[*]. Plus, the number of cases continues to climb today. Fortunately, people are starting to take notice of this alarming trend. But much more needs to be done because hundreds of thousands of people with untreated Lyme suffer. This is why it’s crucial to know Lyme disease’s symptoms and 3 stages.
If Lyme continues to spread, often unrecognized and untreated, it won’t be long before everyone knows someone who has it. Lyme is 6 times more common than AIDS and 1 1/2 times more common than breast cancer[**]. It’s also more common than West Nile Virus and other vector-borne diseases.
- Untreated Lyme Disease
- Lyme Disease Ebook
- STAGE 1. Early Localized Lyme Disease (1 to 4 weeks)
- STAGE 2: Early Disseminated Lyme Disease Infection (1 to 4 months)
- STAGE 3: Chronic Lyme Disease (Or Late Persistent Lyme Disease) Symptoms
- Lyme Disease Ebook
- Chronic Lyme Disease Recovery
- Lyme Disease Test
- Lyme Disease Treatment
- More About Symptoms And Stages of Lyme
- Lyme Disease Guide
- Summary – Symptoms And 3 Stages of Lyme
- Lyme Disease Ebook
- IF YOU ARE DEPRESSED OR FEEL SUICIDAL…
- Additional Lyme Disease Resources
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Untreated Lyme Disease
Knowing what to watch for is critical. I lived with untreated Lyme for nearly 2 years and chronic Lyme for almost a decade. I don’t want anyone to have to experience what I have been through.
But I’m not the only one. Far from it. In fact, according to the CDC, there are 476,000 yearly cases (not counting all the cases that are undiagnosed and unreported).
Reporter Linda Simmons from KY3 News interviewed me about my experience with Lyme disease. You can watch the interview here.
RELATED: Undiagnosed And Suffering
Lyme Disease Ebook
Get the FREE Lyme Disease Ebook to learn more.
What Are The 3 Stages of Lyme Disease?
I hope this article will help you protect yourself and your loved ones from this horrible disease. Lyme disease can be very debilitating, so prevention is critical.
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Signs, Symptoms And Stages of Lyme Disease
Here’s what you need to know about the 3 stages of Lyme disease, symptoms, signs, testing, and treatment:
STAGE 1. Early Localized Lyme Disease (1 to 4 weeks)
This stage can develop from days to weeks after becoming infected.
Symptoms may include:
- Rashes – Less than 50% of Lyme patients remember developing a rash. Sometimes the rash looks like a bull’s eye. This is referred to as erythema migrans (EM). It’s a myth that you must have a bull’s eye rash to have Lyme (*). You don’t have to get a bull’s eye rash to have Lyme. I didn’t ever see a bull’s eye rash but have developed many unusual red and splotchy rashes since the tick bites. For more on rashes, keep reading below.
- Flu-like symptoms include fever and chills, fatigue, headache, pain or stiffness in the neck, and swollen lymph nodes (*).
- Nausea, dizziness, and vomiting
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STAGE 2: Early Disseminated Lyme Disease Infection (1 to 4 months)
This stage develops when the disease is not found and/or appropriately treated soon after infection. The infection can begin to attack the joints, heart, nervous system, and skin at this point.
Symptoms may include:
- More rashes may start to appear in different parts of the body due to the infection spreading
- Paralysis of the facial muscles, or Bell’s Palsy
- Fainting
- Headaches or migraines
- Painful, swollen joints, such as the knees
- Heart palpitations or Lyme carditis
- Conjunctivitis, otherwise known as pink eye
- Meningitis, or swelling of the brain
- Unable to tolerate exercise
STAGE 3: Chronic Lyme Disease (Or Late Persistent Lyme Disease) Symptoms
Failure to treat Lyme promptly can cause damage to the brain, joints, and nervous system. This is the most severe stage.
Symptoms of chronic Lyme may include:
- Extreme exhaustion, not relieved by sleeping or resting
- Inability to control facial muscles
- Heart problems, such as pericarditis
- Tingling and numbness in the hands and feet
- Arthritis, often in the larger joints, such as the knees
- Short-term memory loss
- Confusion
- Difficulty thinking or reasoning
- Difficulty speaking
- Getting lost, even in familiar areas
- Anxiety, panic attacks[*]
- Seizures
- Tremor
- Sensitivity to sound, light, and smells
- Headaches and migraines
- Mood swings, depression
- Sleep disorders
- Migrating joint and muscle pain
- Vertigo
- Difficulty processing information
- Difficulty hearing
- Vision difficulties
- Weight gain or loss
- “Air hunger”
- Pain in the chest or ribs
- “Heart block”
- Neck pain, stiffness, and cracking
- Night sweats
- Erectile dysfunction
- Heart murmur or valve prolapse
- Light-headedness, dizziness
- Menstrual irregularity
Now that you’re familiar with the signs, symptoms, and stages of Lyme, let’s take a look at some important factors about chronic Lyme, testing, and treatment.
Lyme Disease Ebook
Get the FREE Lyme Disease Ebook to learn more.
Chronic Lyme Disease Recovery
Unfortunately, there is no cure for Lyme disease. Chronic Lyme results when a patient is treated too late because of misdiagnosis or treatment failure. At these advanced stages of Lyme disease, the patient’s health and quality of life are often critically affected by many symptoms often, including the neurological system.
This late disseminated stage is more complex to treat and can be disabling to the patient. It’s a good idea to find a doctor who specializes in treating patients with tick-borne diseases. They’re called Lyme literate doctors. Be sure you do your homework and ask for the cost of care upfront, as some of their services aren’t covered by insurance, depending on the treatment and doctor.
Here are some resources to help you find a Lyme literate MD:
- Lyme Disease And Tick-Borne Disease Specialists
- Lyme Literate Doctor Search
- Finding A Lyme Literate Healthcare Provider
Lyme Disease Test
Wishing to know how to check for Lyme disease? Diagnostic tests are insufficient in determining whether or not someone has been bitten by a tick. This is especially true because the early symptoms of Lyme mimic those caused by the flu and other prevalent diseases.
If a patient has the bullseye rash, they can likely be diagnosed with Lyme alone. But many times, it’s not present, or if they have a rash, it may look different.
Antibody tests can be done, but the antibodies take several weeks to develop. The CDC recommends a two-tiered testing strategy. However, it has numerous flaws because of errors. Many people who have Lyme have tests that come back negative in the early stages of their illness. If these people aren’t tested again, or if the inaccurate testing continues to fail, their health, well-being, and (often) livelihood will suffer.
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Lyme Disease Treatment
The first line of treatment for Lyme is doxycycline. Other antibiotics have proven effective against borrelia and may be used too. And sometimes, intravenous antibiotics are used for complex cases. The patient’s response to treatment depends on their specific health and stage of the disease.
Every person responds differently. And side effects of treatment can be pretty harsh in some cases, including Herxheimer’s reactions.
Because of the complexities of the disease, especially once it enters the later stages, various treatment options may need to be explored. The patient may find it more tolerable to approach treatment from a holistic, natural approach.
There are several natural herbal Lyme protocols available. I used Dr. Lee Cowden’s Herbal Protocol.
Here are 21 Strategies To Fight Lyme Disease Naturally you may find helpful.
More About Symptoms And Stages of Lyme
Several years ago, I was desperate for answers when I had many of the symptoms above and none of the doctors could figure out what was wrong with me. I spent many hours researching independently, figuring out what was causing all of my health problems.
Thankfully, I was eventually tested for Lyme and co-infections and diagnosed with Lyme, tularemia, and rocky mountain spotted fever. Yet, so many people are still searching and wondering why they suffer from the above symptoms.
Maybe you’ve been diagnosed with fibromyalgia, myofascial pain syndrome, autoimmune conditions, or chronic fatigue syndrome – as I was initially. I was even referred to be tested for Multiple Sclerosis.
But, like me, you wonder, what is causing all of this? Why am I in pain and exhausted all the time?
Lyme Disease Guide
I created a Lyme resource guide to help answer your questions. The guide gives you:
- More details about Lyme and other tick-borne diseases
- Valuable information on diagnosis and testing
- Where to find financial help for Lyme patients
- Prevention tips
- Encouragement
- Instructions for how to properly remove a tick
- And much more…
all based on research. You can check out the product by clicking the image below.
Summary – Symptoms And 3 Stages of Lyme
This list of signs, symptoms,
My friend, if you are struggling with an illness and the doctors haven’t been able to help you, you may want to study the lists above to help rule out (or in) Lyme disease. This is especially true if you spend a lot of time outdoors or live or work in a tick-infested area.
And, of course, if you know you’ve been bitten by a tick and aren’t feeling well, please get yourself checked out immediately. Remember that anyone can get Lyme, and no one is immune.
Lyme Disease Ebook
Get the FREE Lyme Disease Ebook to learn more.
IF YOU ARE DEPRESSED OR FEEL SUICIDAL…
- Call 911.
- Go to the closest emergency room.
- Call the National Suicide Prevention Lifeline: 1-800-273-8255 (Available 24/7)
- Text HELP to the Crisis Text Line at 741-741. (Available 24/7)
Do you have any of the symptoms above? Or do you have an unexplained illness and haven’t been able to find answers? Share your experience below. X, Lori
Additional Lyme Disease Resources
For more information on the signs, symptoms, and 3 stages of Lyme disease, be sure to check out:
- Justin Bieber’s Lyme Battle Exposes Ugly Truth
- Warning: Lyme Disease Is Spreading Faster Than AIDS
- Everyone With Lyme Disease Has A Story
- Lyme Disease Awareness
- Warning: Lyme Disease Is Spreading Faster Than AIDS
- Author Marlena Lewis Writes About Life Struggles And Lyme Disease
- Experts Caution Increased Lyme Disease Risk: Reports Of Possible Tickmageddon On The Rise
- How To Sleep Better With Lyme Disease
- 16 Vital Facts About Lyme Disease: A National Epidemic
- Why Do People With Lyme Disease Not Catch Colds And The Flu?
Finally, the information provided in this article has not been evaluated by the FDA and is not intended to treat, prevent, diagnose, or cure any disease or health problem.
This post has been updated.
I have a grandson that was not properly diagnosed because the Dr.s told him we don’t have Lyme in this area. I kept telling him I felt sure that is what was wrong with him. He finally went to a Dr. in Columbia that specializes in Lyme and was diagnosed. But he had already had it for 2 or more years. So his health has been really bad. He is some better now but certainly not 100%. He has certainly suffered a lot. I got a tick bite this summer and I did have the bull’s eye rash which kept getting bigger and bigger so I went to urgent care and thank goodness the Dr. there was a believer that we have Lyme in this area. She prescribed the antibiotics that I needed and I have had no lasting effects from it but had I not got help so quickly I would have been like my grandson. I am going to tell him about this blog so he maybe can benefit from it. I sent you a private message on FB telling you how I come to know about your blog. Thank you for doing this…I’m sure it has helped a lot of people.
I’m so sorry to hear this, Dee. As you probably know, Lyme has been reported now in all 50 states. I’m thankful he found a doctor who was able to figure out what was wrong and give him a proper diagnosis. It is truly atrocious how often this happens in our state as well as many others.
I’m so thankful you knew to go straight to the doctor after getting the tick bite and bull’s eye rash and were treated right away. Yes, please do share the blog with him. And please feel free to continue messaging me on Facebook or email me at healthylife@lorigeurin.com
I truly appreciate you reaching out and sharing your story. The Lyme community is incredibly supportive which has been such a blessing in my life because so little is known about how to properly treat it when it reaches the chronic or late stage. I’m here for you both if I can help in any way. X, Lori
I also am in late stage chronic Lyme disease. I just found out from my new doctor that I was not given the proper treatment when first diagnosed a few years ago. I am in pain, completely exhausted, memory problems, etc. wouldn’t wish this on anyone.
Hi Tammy, I’m so sorry to hear that you’re going through this, too. Unfortunately, your experience is shared by way too many people including myself (one is too many!).
The symptoms you listed, (pain, complete exhaustion, memory problems) have been in my top 5 symptoms since my journey with chronic Lyme began too. I’m thankful you’ve found a new doctor and pray that he or she are able to help you start recovering.
Hang in there and keep hope alive, Tammy! I’m rooting for you! You will get better. It’s just a slow healing process (at least it has been for me).
Please keep in touch and let me know how you’re progressing. XO
Wow. I’ve been hearing about this so much more lately but I had no idea how bad it was. I can’t believe it just destroys your body like this.
It’s a crazy disease, Brittany. The bacteria which causes Lyme has 3 different forms and the cyst form can actually evade antibiotics. (http://www.tiredoflyme.com/cyst-form.html)
Thanks for reading!
This is a great reference. My mother-in-law says she was diagnosed with lyme disease years ago while she lived in Rhode Island.
Thanks, Heather! Hoping it will help.
Wow…I hope she’s doing well now!
Yikes I didn’t realize the incidences of Lyme had increased that much! That’s so scary! I live in tick country and yep we’re definitely aware of ticks!!!
Hey Di, Yep, it is…Great job being tick aware! 🙂
Such an important post! I am always keeping an eye on my family for symptoms!
Your family is fortunate to have you looking out for them, Roxanne!
I had no idea that Lymes Disease could cause permenant brain damage. Its a scary thought but thankful that you are raising awareness and sharing the signs and symptoms with us! x
Great post! It’s important to know these kinds of things and I am glad that I am now well informed about this disease through your post.
Awww, thanks, Angela! 🙂
You know to be honest I have never really given lyme disease a thought. This has given me some really important facts that I should know and really understand. thanks for sharing.
thrifting diva
http://www.thriftingdiva.com
I hear you, Ayana. I didn’t really know what Lyme was until I had it. Thanks for sharing your thoughts!
wow, so many symtptoms, no wonder it goes mis-diagnosed so often. this is a great post to read to become aware of the underlying symptoms. thanks!
That’s so true, Cecilia! Thanks!
I live in an area with tons of pine trees so I am hypervigilant about checking myself and my dog for ticks.
That’s great that you’re so aware about checking yourself and your dogs, Cindy! Prevention is key.
Are you identified as having Lyme with a blood test? Fabulous post, very helpful.
Thanks so much, Terri – I’m happy you found it helpful! Great question!
Lyme disease is a clinical diagnosis.
Blood tests for Lyme are notoriously inaccurate, especially in the early stages of the disease because the antibodies don’t have time to develop yet. Many people test negative early on but can actually have Lyme.
If a person develops a bulls-eye rash (erythema migrans) this is considered diagnostic for Lyme. However, less than 50% of Lyme patients ever recall having a rash. (http://www.ilads.org/lyme/about-lyme.php)
I have had all sorts of unusual rashes since getting Lyme, but never noticed a bulls-eye rash.
In my experience it is much more difficult to get proper testing and diagnosis in areas where Lyme isn’t considered prevalent. It’s like an uphill battle in many places if you don’t live in the Northeast. And even if you do, I’ve heard from plenty of people who are still struggling for prompt and appropriate medical care.
Years ago, Lyme may have been only concentrated in certain states, but ticks know no borders and that has quickly changed. It’s found in every state now.
Here’s a more in-depth explanation of Lyme diagnosis: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
I hope this helps!
I’d heard of the name Lyme Disease, but I’ve never really known much about it. It’s definitely important to raise awareness about the different diseases and illnesses out there.
Thanks, Shannon!
I have a friend who had lyme disease. For a long time, they thought it was fibromyalgia.
Fibro is a common misdiagnosis for Lyme. The doctor diagnosed me with it too. It’s such a tricky illness because it looks like so many other diseases and conditions.
I hope your friend is doing better now, Kelly!
I had no idea that it was increasing that much and thanks for including the symptoms so we can keep an eye out for them
Hey Charlotte, Surprising, right? I hope it helps!
I have been chasing a lyme’s diagnosis for a few years now. I am currently in the middle of a flair up and it’s hard.
Oh, Reesa, I’m so sorry! Do you have a doctor who specializes in treating Lyme patients?
Please feel free to email me or message me through my facebook page. I’m here if you need someone to talk to.
Gentle hugs and prayers for healing. XO
I appreciate this post so much because I barely know anything about lyme disease and how it affects our health. It’s better to know what’s out there instead of guessing what’s happening to your body.
Thanks a bunch, AnnMarie! I hope it helps, and I totally agree. Staying informed and advocating for your health is crucial.
I honestly had no idea that Lyme disease could be so debilitating over time such a long stretch of time. That’s so scary.
It really is Renee. I appreciate you reading and commenting on this!
I have had a couple friends in the last couple years dealing with Lyme disease. I remember hearing about it 20 years ago on 20/20 and it is so surprising to have people with it in my circles. We don’t live anywhere near where they said people could get it.
I’m so sorry to hear about your friends, Rachel. This is horrible and makes me sad.
It also makes me angry that people are continually being told, “You can’t get Lyme disease in (fill in the blank)” because it is simply not true. It happened to me and others who live in our small town in Southwest Missouri and it’s happening throughout the U.S.
In the early stages of my disease (when the time was ripe for treatment) 2 different doctors told me that I had the symptoms of Lyme but because I’d never traveled to the Northeast I couldn’t have it. There is so much misinformation about Lyme within the medical community. It’s been eyeopening.
Lyme cases have been confirmed in all 50 states. Even the CDC admits it: http://www.bayarealyme.org/blog/cdc-talk/
That said, I’m thankful to have found an excellent primary care doctor in our town who is up-to-date and well-educated on Lyme, along with my Lyme literate M.D.’s I don’t know where I’d be without them!
I’ll get down off my soapbox for now. 😉
I pray your friends get the treatment and medical care they need and they’re able to heal.
Thank you so much for sharing this and bringing light to Lyme disease. Hopefully the more people that read this, the more we can help detect it early if possible.
Thanks, Brittany! I hope it helps bring awareness to Lyme disease too. Like you said, early detection is crucial.
When I was just out of my parent’s house, I went to the doctor and was given a diagnosis of Lyme disease. I barely knew what that was. I just felt exhausted all the time and like my body was swollen and really heavy. The doctor told me it seemed to be early and gave me some medicine. I’ve been fine ever since then. But I’ve heard of people having horrible lasting symptoms from Lyme disease. So I think I’m probably really lucky.
Oh my gosh, Erica…I agree. It sounds like you’ve been very fortunate to dodge the Lyme bullet. I’m sorry you had it and were sick initially, but thankful they caught it early and you felt better after taking the medicine! That’s awesome!
You’re right that many people have horrible symptoms that continue, even after treatment. In my case it took the doctors and specialists nearly 2 years to finally figure out what was causing my body to shut down. Unfortunately, by then a round of antibiotics isn’t going to do much. It takes more of a long-term whole-body approach to healing.
Thanks so much for sharing your experience with Lyme. I’m happy you’re doing well! 🙂
I was bit by a tick about a year ago and have been dealing with sever symptoms I cannot explain. I was never tested for Lyme just because I never got a bullseye rash and thought I was in the clear. I’m now wondering if I should’ve been tested. Would a blood test now be enough to positively diagnose me?
Hey Lyndsi, I hate to hear that you’re going through this. Unfortunately, your story is all too common. It’s a common (but not accurate) misconception that you have to have a bullseye rash to have Lyme. A recent study of over 3,000 Lyme patients showed that approximately 40% of people with chronic Lyme remembered having a bullseye rash.
If you were bitten by a tick and you’re having these symptoms now I would definitely want to see a doctor about it. Diagnosis should be clinical, meaning that it’s based on factors like…if you recall a tick bite, your symptoms, where you live, and your medical history. You can read more about diagnosis here.
Lyme testing is notoriously insensitive and “misses roughly 54% of patients.”
Depending on if you have access to a doctor who is knowledgeable about treating Lyme and other tick-borne diseases or not, you might consider looking into IGeneX testing which reports all the bands on the Western Blot test and, as a result, gives a more accurate test result than your doctor would give you if you have a positive ELISA.
I know this is a lot of info to digest. The bottom line is, I’m not a doctor, but based on my personal experience and research on Lyme and tick-borne diseases, I would definitely want to get this checked out, whether that means with your current doctor or getting a second opinion. Feel free to email me anytime at wellnessforlife@LoriGeurin.com. Sending you love and praying that you get answers and relief of your symptoms very soon. X
This is helpful. I have two dogs who like to roam the woods so I’m always worried we’re bringing home disease. Good to know the symptoms.
So glad you found this helpful, Beth! It’s smart that you’re vigilant with your dogs. 🙂
Great information! Lyme’s disease is so scary. I know so many people that didn’t see any symptoms. Thanks for the really good list, I need to be more observant.
Thank you, Mary Ann! You’re right…Lyme is scary. I didn’t even know what it was until I learned I had it. I hope this list helps people identify the signs and symptoms to watch for. And most of all, if you think there’s any chance you could have it, don’t delay…get checked out right away.
This is good to know! A lot of people don’t know a lot about this disease and it’s good to keep informed and more aware of our surroundings and then our bodies.
Thanks, Jeanine! So true. There are so many misconceptions (and misinformation) about Lyme so it’s essential to be informed.
Great article! This is so important, we live in an area that really has a lot of ticks and it’s so important to know the signs.
Thanks! We have a lot of ticks here too. Growing up I found ticks on me because I love being outside. But I didn’t know how much damage they could do until I got Lyme so now I’m much more vigilant myself and with my family. It’s great that you know that importance of recognizing the signs!
I have heard more and more people contracting lyme disease lately, and it’s quite scary. Knowing the signs and symptoms are so important.
So true, Joanna!
Lyme Disease is terrible and can affect so many organs and systems if it progresses thank you for these lists. We had a little scare with my son last year and his tests were equivocal so we treated him. He is ok now he only had a vague rash.
Wow, that must have been scary, Melissa. It sounds like he was treated promptly, which is so important (but doesn’t always happen). I’m thankful he was okay! Thanks for sharing this.
I know Lyme disease but not this in depth. It’s really important to raise awareness on it and to know what the symptoms are in case you or a loved one is experiencing them.
So true, Karen! Prevention is key, but Lyme is spreading so knowing what to watch for is essential to protect yourself and everyone you love.
This is really helpful because honestly, I probably wouldn’t of known most of these. We have lots of ticks where we live, so this is good to know.
I’m so glad you found it helpful, Robin!
does lymes disease stay in your body after taking antibiotics? does it still affect the body?
Hello Ivy!
Yes, the Lyme bacteria (Borrelia) can remain in your body and cause symptoms even after taking antibiotics.
This can depend somewhat on the timing the treatment is received. There is a much higher incidence of ongoing symptoms when one doesn’t receive prompt treatment. Many people who are treated promptly never have symptoms again. The ongoing symptoms tend to happen more when the illness isn’t treated soon enough after the infection.
There are different strains of Lyme bacteria, such as B mayonii, B afzelii and B garinii bacteria. B burgdorferi and B mayonii.
The bacteria are corkscrew-shaped and called spirochetes, but they can change forms to protect themselves from threats, like antibiotics. The different forms include: spirochetes, cysts, and cell-wall deficient (also known as L-form).
Lyme bacteria can also form biofilms, which are like a protective bubble.
I hope this helps answer your questions. Thank you for reading my blog and I hope to hear from you again soon!