If someone would ask me what are the most annoying Lyme-related symptoms that I ever experienced, I would have a list ready within less than a minute. As a late stage Lyme disease victim I experienced a lot of symptoms, mostly because my illness was not discovered on time. Thus I ended up developing neurological symptoms, muscles and joints problems, heart and circulation and digestion.

Let’s start the final countdown and see what are the insidious symptoms. Keep in mind that the list below starts with the less annoying symptom and ends with the winner, the most disturbing symptom of them all.


  • FLOATERSFloaters are a common visual disturbance of the eyes. When exposed to bright light, a Lymie may see in vision dots, lines, or streaks ranging in colours from blue, green, yellow, or red. Floaters can prevent you from performing some activities that require using your sight. That covers a lot of the basic daily activities, from reading  to driving.


  • BRAIN FOG and COGNITIVE PROBLEMS aren’t fun either. When you find yourself stopping in a middle of a sentence without knowing what you were trying to say, or looking for your words makes you feel like you are either a toddler struggling to talk, or a lost person with no idea of what’s going on. Both scenarios, you feel like awful. Needless to add that forgetfulness is your daily companion.


  • CHRONIC FATIGUE. Imagine your energy levels are completely depleted and a long night of peaceful sleep can’t help you reach a state where you feel better. Somedays the fatigue is so bad that you can feel it in your bones. You are totally zoned out and incapable of doing anything but dragging yourself from the bed to the couch.


  • PARESTHESIAS (electric shock sensations in the trunk or in the limbs). The electric shocks are far more disturbing than the numbness, tingling or itching. If you have to think which leg you put down first when you get off the bed, in order not to experience a sudden electric shock going from the lower back to the tips of your toes, then you must know what I’m talking about. Regular people, wake up and don’t have to worry about which foot goes down first. Some even jump out of bed. This Lymie can’t afford that risk, as I may crumble to the ground, unable to sustain my bodyweight while facing the unexpected shock and the pain caused by it. Experience makes you more aware of your own limitations and teaches you how to avoid certain triggers.


  • JOINT/ MUSCLE PAIN. The migratory pain is an unpleasant reality of Lyme disease. When you wake up in the morning, before leaving the bed or even before moving the feet or arms under the covers, you wonder what will start to ache first. Where did the pain move? Is it going to be on the knee as the previous day? Or somewhere else? Will it shift to the neck or the shoulder? There are endless variations. 


  • MIGRAINE HEADACHES. Another annoying symptom is the headache. You’d say: “Come on! Everybody gets headaches!” I agree. The only difference is that a Lymie has to handle a throbbing migraine headache on top of other disturbing symptoms. It requires a lot of self-control and determination to stand and perform a normal activity like washing the dishes or preparing dinner while experiencing a combo of symptoms.


  • BURNING UNDER THE SKIN. The “famous“burning sensation mentioned by all Lymies, refers to the sensation of having your body on fire. The fire can migrate from one area to another and change its intensity. If you want to read about about this read my previous post.


  • SHORTNESS OF BREATH.  Walking up one flight of stairs without gasping for breath?  It’s not due to the lack of exercise! Feeling like you are running out of air is not an unusual symptoms among the Lymies, especially those diagnosed with Babesiosis co-infection. That can trigger shortness of breath, chest pain, vascular headaches and so on. Lyme  gets you the whole ordeal.


  • HEART PALPITATIONS. Most of the chronic Lyme sufferers have learnt or experienced that any sudden move, small physical effort, even a good laughter or a bigger meal can make you feel your heart is about to pop up, come out of your chest.


  • HEART PAIN. There’s nothing fun in feeling or going through the symptoms of a heart attack. When you lie in bed (that’s if you made it all the way to the bed, otherwise you may be lying on the floor) with your hand clutched to your heart, trying to miraculously make the pain go away or at least reduce its intensity, offering your poor self some comfort, you know that it is by far the worse symptom you ever have experienced.  

The level of pain experienced by a late stage Lyme sufferer can vary from short-term and mild to excruciating long-term or any combination in between. People experience pain differently. The above list is based solely on my experience.

What are your top 3 worst symptoms?



  1. Pain in the joints was unbearable, in emergency they just X-rayed me but didn’t do anything…they thought it was a spider bite. They said see your family doctor. They didn’t give me a Lyme test. My doctor realized what it was,had me tested and found out what it was. He gave me the proper antibiotics. I had Belle’s palsy on the right side of my face…Was legally blind for two months.

    1. I am sorry to hear that you had to go through that.You are lucky your family doctor was able to recognize it and that you got a positive test. Most of the people don’t and they get misdiagnosed. Not all doctors are Lyme literate.

  2. Tingling, night sweats, food intolerances, severe fatigue, pain that no one ever sees me in, having times when I am great and followed by being confined to bed.
    People not wanting to know or understand or care.

    1. Thank you for stopping by and leaving a comment. It’s hard to make someone see what you feel, when suffer from an invisible illness. The lack of care or moral support from friends and family can add more to your plate. I hope you’ll stay strong and continue the fight. Be well!

  3. I just got diagnosed yesterday in 20 years old ! With two young children and wouldn’t wish this on my worst enemy , I don’t ever recall getting bit or having a rash but I have been suffering with all the symptoms you listed as my main symptoms! I wish I could recall the tick bite then I’d feel more at peace! Right now my heads all over the place. I started on antibiotics yesterday and I feel as if it’s not going to help ! Am I stuck like this 😰

    1. Sorry for the late reply! Getting such a diagnose can make one feel overwhelmed with worries. I can relate to that. Are you being seen by a Lyme literate doctor or who prescribed you the meds? Do you have co-infections as well? Keep in mind you will need to make some dietary changes as well. Have a look at the Lyme diet article posted here,, you may find it useful. Keep your head up and fight the spirochetes!

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