First Symptoms of Lyme Disease: Real Stories of What Lyme Feels Like

Lyme disease can cause some nasty long term damage if it isn’t treated quickly, so it’s really important to take any early symptoms of Lyme disease seriously.  The most notorious symptom of Lyme is a bulls eye shaped rash.  Not everyone gets a rash from Lyme disease though.  Or, as was my case, the rash was barely visible and didn’t look like a bulls eye (see Lyme rash pictures here).

The problem is that other early signs of Lyme resemble other diseases.  And, because Lyme can affect all parts of the body – including the nervous system, muscles, joints, and heart —  some of the early signs can be really strange.

Below are some of the first symptoms of Lyme disease as well as real stories of what they felt like from people who were diagnosed with Lyme.  Of course not everyone with these symptoms will have Lyme.  The message is that you shouldn’t ignore these symptoms, especially if you’ve been in tick-infested areas.

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First Symptoms of Lyme Disease

Flu-Like Symptoms

About half of people with Lyme disease will get flu like symptoms. (1) This is a pretty generic description of the symptoms though as “flu like” can mean many things.  Here is what those flu like symptoms felt like for people who later got diagnosed with Lyme.

Headaches, feverish, dizzy, back pain, muscle and joint aches, fatigued, etc. This would be on and off, acute symptoms, all showing up separately for the most part. Not really all coming on at once. – there would be huge portions of the day where I felt fine, or just a little off.

Two weeks after the tick fell off I got hit with the acute “flu like” symptoms. This was unlike any other flu I’ve felt in my entire life. I wrote a lot of the symptoms down every time they happened because they were so severe and strange: brain fog, hot skin, migraines, sweaty hands, low body temp, low grade intermittent fevers, air hunger, night sweats, light sensitivity, sound sensitivity, severe malaise, balance problems, phantom smells, involuntary curling of fingers, heart palpitations, rapid heart rate, slow heart rate, chest pains, random pains, restless legs, migrating joint pain. A year in diagnosed with babesia, bartonella and borrelia. Tested positive for mycoplasma later.

My daughter is young and her first symptoms were body aches, headaches and super high fevers, all for a good month before the rash showed up. The rash was also extremely light and could’ve easily been missed had it not been for me paying really close attention to her.

 

Cardiovascular Symptoms

Lyme bacteria can enter the heart tissue and affect its electrical system. When this occurs, it is called Lyme carditis. According to one study, Lyme carditis occurs in 4-10% of patients and symptoms occur after 21 days on average.

Rapid heart rate and chest pain were my first symptoms. Thought I’m having heart attack but it didn’t go away. I was put to EKG and everything was normal.

Got sent to ER for possible heart attack while suffering what I thought was worst flu ever – ER doc discovered the bullseye rash, which we had thought was a small burn – have been tested for COVID more times than seemingly possible because the symptoms are all the same.

I developed a high heart rate that would cause me to completely collapse after eating. It stinks.

 

Anxiety, Depression, Mood Swings and Irritability

Lyme disease is known to cause psychological symptoms like anxiety and depression.  These symptoms usually take a long time to appear.  However, there are accounts of people getting bit by ticks and their first symptoms of Lyme including psychological changes.  (2, 3, 4) Note that anxiety can also come from Bartonella, a Lyme co-infection.

The Dr. kept telling me I was stressed and having panic attacks. I wasn’t stressed much but they didn’t believe me. I had 100 things going wrong (literally) in my body. Heart beating irregularly, seeing/hearing/smelling things that werent there, felt like someone turned up gravity.

For me, Lyme provoked panic attacks. Never had one prior to Lyme. Treatment thus far has greatly diminished the severity and frequency of the panic attacks.

What was crazy is that once I was feeling anxious about going out, and I accidentally stubbed my toe. I fell on the ground having a full-blown panic attack. When I found out I had Lyme, I was so relieved to understand that my increased anxiety and panic attacks were because of the stress my nervous system was under due to the bacterial infection.

 

Light Sensitivity

Light sensitivity from Lyme doesn’t just mean your eyes.  Your skin can also get sensitive to light.

I was sensitive to incandescent, fluorescent and sunlight. It’s like having a new sense – you can close and cover your eyes, and have a person shine a flashlight on the rash, and you can feel it, but it doesn’t feel like heat. It feels like being touched.

 

Headaches

Headaches are one of the most common early signs of Lyme disease.  In serious cases, Lyme bacteria can get into the brain and cause swelling.

I had Lyme disease, took doxycycline, got a horrible headache that never went away and figured out right before my blood vessels burst in my eyes that it was causing me to have pseudo tumor cerebro which basically means the spinal fluid in my brain was building up. They had to do a spinal tap, ow! Get tested for other tick borne illnesses! I had two co infections!

 

Joint Pain

Joint pain is often considered a symptom of late-stage Lyme disease.  However, it often shows up in the early stages as one of the first symptoms.

No target rash but really sore joints and incredibly uncomfortable when trying to sleep. Doc originally tested me only 2 weeks after the tick bite and Lymes didn’t show up as there was not enough in my system. My symptoms got worse so went back to Doc’s who did another blood test this time it was positive. A week of antibiotics and I was right as rain.

I had arthritic symptoms in my knees, random heart issues and started having a really hard time recovering after work outs. My body just suddenly felt like I had the flu all the time. Fatigue and aches etc.

Never got a ‘bulls-eye rash”, but I did have this purple, blistery rash that I assumed was a spider bite on my right leg. A week later after my hip was becoming too painful to put any pressure on

 

Extreme Fatigue

I went overnight from the best condition of my life to being unable to get off the couch for longer than 15 minutes at a time.

Two weeks after getting bit by the tick, I started feeling really tired and weak.  I have small children though, so thought I might just be tired from everyday life.  Then I saw a reddish rash on the spot where a tick had bit me.  I tested positive and was prescribed doxycycline.  Within two days on antibiotics, my energy was back.  It was only after I felt better that I realized just how fatigued the Lyme made me.

 

Swelling

Lyme can cause swelling.  It usually occurs in the knees or other joints.  However, swelling can also occur in other parts of the body.

My toe on one foot swelled up and turned purple. That was my only symptom for almost 2 months.

 

Seizures

Because Lyme affects the nervous systems, it can cause seizures.  While this isn’t a common symptom, it can be a symptom even in early stage Lyme disease. (5, 6)

The very first symptom of my journey with Lyme was a full body seizure, totally lucid but in complete shock thinking what the actual hell is going on!? After that I could only speak in stutters and the tremors lasted the day

About a month/6 weeks after the bite I suddenly felt very panicked, like something terrible was going to happen and then had a lucid full body seizure. Only lasted a couple of minutes but I was abit out of it after and had lots of shivers/shaking the rest of the evening. Everything went to hell after that very rapidly with many many symptoms popping up very quickly, mostly neurological stuff. Ended up spending weeks in hospital and honestly thought I was going to die.

 

It Can Be Hard to Get a Diagnosis for Lyme Disease

Because so many of these Lyme disease symptoms also occur in other diseases, your doctor might not even test you for Lyme.  And, if you do get a test, false negatives are very common – especially in the early stages of Lyme.

As one Lyme victim said, “Do not let them send you away with a false negative. I screened false negative with a huge ass bulls-eye rash on my arm.

There is no shortage of stories from frustrated patients who had to argue with their doctors to get treatment for Lyme.   One guy even wrote that, “I was tested for HIV before being tested for Lyme disease.. even though I had told the docs I thought I might have Lyme initially because my symptoms lined up.

Of course, having any of these symptoms doesn’t necessarily mean you have Lyme disease (there is actually a huge branch of scam doctors who diagnose people with chronic Lyme just to sell their quack remedies…).

The point is that you should take any symptoms of Lyme disease seriously.  If you don’t feel well, insist on getting tested for Lyme.  You should also get tested for Lyme co-infections as well. And, because of how many false negatives occur, get tested again if the test comes back negative.

 

Let’s hear it – what were your first symptoms of Lyme disease?  Any unusual ones? Let us know in the comments section below.

 


Sources for first-hand accounts:
https://www.reddit.com/r/Lyme/comments/q9cdum/first_signs_symptoms/
https://www.reddit.com/r/Lyme/comments/psodxm/was_anyones_first_lyme_symptom_rapid_heart_rate/
https://www.reddit.com/r/Lyme/comments/pqf1u4/lyme_symptoms/
https://www.reddit.com/r/Lyme/comments/2ktio2/lyme_and_anxiety/
https://singletrackworld.com/forum/topic/lymes-disease-1/
https://www.reddit.com/r/CampingandHiking/comments/3h3i5y/psa_be_cautious_of_lyme_disease_be_aware_of/
https://www.reddit.com/r/ChronicLymeDisease/comments/ip55vl/worried_i_have_lyme/
https://www.reddit.com/r/Lyme/comments/jdhl45/different_first_symptom_of_lyme/
https://www.reddit.com/r/breakingmom/comments/6ahhh1/anyone_know_anything_about_lymes_disease/
https://www.reddit.com/r/AppalachianTrail/comments/cnu0u3/anyone_find_out_they_had_lyme_disease_after_the/

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