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.
- FLOATERS. Floaters 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?
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.
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.
Has anyone heard of a burning/tingling/numbness in the “thigh pit” area associated with Lyme’s? I was recently diagnosed with this horrible disease and family doctor said she’d never hear of anyone with such a symptom it HAS to be related ..anyone?
Hi Johnny! I have not heard about this symptom. You should ask a Lyme specialist about it. Or maybe on a Lyme forum where you can have a lot more people reading your question. Maybe someone could actually help you with your question.
I have that pain in my elbow pit and armpit
Dear Tom. I’m so sorry. that is dreadful. The muscles on my face keep trying to go, and my sight. I keep pleading on the Lord to spare me. Several times that I am sure of, He has – for that episode. I didn’t know what this was, I’m scared.
I wish you all the best in the future.
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.
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!
I have & do experience all this. My adult daughter does not believe i have lymes though I have been tested twice was a late diagnoses of maybe several yrs into it.
C A Driggs, I can’t even imagine how that feels when family members don’t show you the needed support. Having an invisible illness and an unsupportive family makes the harder even harder.
I have that too.
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 😰
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, https://a-zlyme.com/what-is-the-lyme-diet, you may find it useful. Keep your head up and fight the spirochetes!
My Wife was diagnosed of Lyme disease four years ago. She was so terribly sick. I think her worst complaint was the severe headache. She I was taken doxycycline hyclate 100 mg as treatment for Lyme disease, twice a day for 21 days. and didn’t seem to be improving. She did not display a rash or any kind of bull’s eye. Diagnosis was from blood test. We tried every shots available but nothing worked.Her Lyme Disease got significantly worse and unbearable because of her cognitive thinking. In 2015, our physician advised we go with natural treatment. She had a total decline of symptoms with this treatment, the fever, joint pain, weakness, shortness of breath, and anxiety. and others has subsided.
Happy to hear that your wife is feeling better! Thank you for sharing her experience and letting me know about this. Natural remedies sometimes work much better than the regular meds and they don’t overload one’s system with more chemicals.
Hello Lavi. These natural herbal gardens is scam.
@living with lyme – Thank you for making me aware of it. I removed the name of the clinic and even deleted some of the comments used to backlink their website.
That’s a great outcome. May I ask what treatment did she get?
What was the treatment?
The neurological symptoms were frightening and even more scary we’re several incidences of of a fib after drinking alcohol (back when I didn’t acknowledge how sick I was). Both have improved with antibiotics. The ongoing problem is severe joint pain all day, but at night it is debilitating. The other odd symptom ,I haven’t heard anyone mentionis my toungue feeling raw- a friend in eastern medicine said it was common with extreme exhaustion.
Hello AA! Years back I learnt that any alcohol intake mixed with the Lyme toxins was a recipe for disaster, capable of creating some serious liver damage. Also the high levels of porphyrins can induce symptoms similar to a herx reaction. As for the severe joint pain at night, I get you. Not to mention when it is full moon! I haven’t heard though about the “tongue feeling raw” symptom. Are you taking anything to increase your energy levels?
I suffer fromnloads of symptoms about 30 some getting worse, but only joint pains in arms and shoulder and regular back ache. No treatment yet. See spevialist on 26th august 2019, am afraid of being turned away withouthelp. When i am ilk and mostly bedridden.
Hi Gil! I really hope that you will find a specialist that will help you and treat you in order to improve your symptoms.
Hardly anyone remembers getting bit because Lyme and co-infections are carried by more than just Ticks…..try mosquitoes biting flies chiggers fleas and spiders.. For someone has been suffering for over three and a half years the shortness of breath gasping for air and heart pounding out of your chest for no reason are my work symptoms… I have 25 symptoms total from top to bottom but those two are by far the worst and keep me from living a normal life.. just got to sponaugle Wellness Center in Florida 3 days ago heard they’re the best in the country I hope to God this works
Hi Harold! Thanks for stopping by! You are right, not only ticks can carry the bacteria! I hope that your symptoms will improve and you will feel better. Stay strong!
Wanted to know how it is going at sponagule thinking about trying it myself .please let me know how it is working
Please let me know how they work . Planning on trying it my self
I too was sick for many years (15 or so) before getting a diagnosis by a lyme literate doctor. I’ll always be grateful for his diagnosis, but regret the heavy duty antibiotics he put me on for 1 ½ years (he wanted me on antibiotics longer but they eventually made me very sick, I couldn’t take them any more). Several years ago I found a natural doctor who confirmed Bartonella in my system and put me on an intensive herbal protocol for a year. I returned to good health, for about 2 years.
Then, this December, I had an especially stressful month and wham – all my symptoms came back, along with a new one (interstitial cystitis, painful). I’ll be starting an herbal protocol shortly. This reason I tell this story is to remind Lyme patients to stay diligent with your health; I live very clean but still didn’t manage my stress well and had stopped taking supportive herbs.
I found a website that I think explains the challenge of lyme very well:
Dr. Rawls was a lyme suffer who cured himself. His website offers many well written articles about his understanding of chronic health issues, which he believes are caused primarily by chronic immune dysfunction. The idea is that we are all essentially swimming in microbial life (almost everyone comes in contact with bartonella at some point in their life, for example) and it’s the job of our immune system to keep microbes at bay. He offers clear, good advice about how to maintain a robust immune system. Whether or not you try his herbal protocol (“Vital Plan”; I haven’t tried it tho’ I’m considering) his website is worth a comprehensive read.
Hello K.S.! Thank you for stopping by and sharing your story! It is true that herbal protocols sometimes work better than the antibiotics. As for the impact of stress on our health, that is a huge topic! When we start to feel better and get back on our feet, we tend to forget that our energy levels go lower much faster than for others. We need to be consistent on supporting our immune system and be more proactive in terms of taking care of our health.
P.S. I will look into the Vital Plan. Thanks!
8 years on and still suffering. A positive Elisa test and a negative Western Blot, but having false positives and negatives with the Portland Down testing in the UK doesn’t give much hope. So many symptoms, mainly the worst being exhaustion. But also pain. Also migraines that make my head feel like it will explode. Moving a millimeter is excruciating. I have to get a doctor out for injections to stop the sickness and migraine pain. The electric shock, pins and needles in my feet can be unbearable. They say it’s Fibro and M.E. but I don’t think it is. I wake in the middle of the night like I have a 24 hour bug, but by morning it will go. What can I do. No one helps. You’re just left to suffer. My life is slipping away and I’m missing my daughter grow up. She’s 9 now and she’s never known me well. I have carers in x2 a day and can’t take her to school.
Hi Sarah! Thank you for sharing in here what you are going through. Being parent and suffering it ain’t easy at all! You can not rely on the results of the test only. Have you tried finding a Lyme specialist in your area? Many Lyme sufferers have being misdiagnosed before getting a proper diagnosis. Your symptoms do sound like Lyme. Also are you taking any herbal supplements to boost your immunity? What do you do to detox?
Sarah, This so sad. I understand how you feel. I am
Being treated by Dr Josh Berkowitz in London. 6 months in and feeling like a human again (most of the time)
Hi Sarah. I’m so sorry for your suffering. I had the migraines terrible for 15 years, twice in 10 days I would rock and vomit for 12 hours, i take 10mg of nifedipine at night now, which is a blood pressure medication but had the side effect of getting rid of the migraines. It might work for you, you could only ask your GP. I tried everything before that. I have the electric shocks now, head, ears, eyes, feet. I take half a zopiclone to sleep – works well. I place my faith in Jesus Christ daily. That also helps. When I love Him a lot, some of my symptoms clear away. I’m sorry your daughter doesn’t get a lot of well time with you and I hope this improves.
It’s terrifying how fast this disease can overtake you. I wasn’t diagnosed right away, and have suffered pretty bad neurological damage. Last year we finally figured out all the issues that were making me not heal as fast – I had a Rocky Mountain Spotted Fever infection for 3 years before we tested for it and found it. I also had Bartonella. A year prior we had tested for Babesia and Lyme and those were the first 2 that came up positive VERY strongly. I was 25 and taking care of my new born son through all of this. One of the reasons people don’t remember tick bites is because not everyone gets the bullseye, or it’s so subtle you don’t even realise that’s what it is. And like in my case, more than likely a Nymph stage tick bit me, which are roughly the size of a poppy seed and easily missed. We also discovered I have the MTHFR gene mutation, and my house has a mold problem, 2 more things that really hinder the process of getting well again and fully healing from these tick illnesses. Treatment that has worked to bring me to 90-95% better has been combination antibiotics that we tweak each month, herbal drop tinctures, and supplements for keeping inflammation down, strengthening the immune system, and addressing my vitamin deficiencies from MTHFR. Also big nutrition changes like no more sugar or caffiene, cutting back on breads, no fatty or greasy foods, limit processed foods as much as possible, and make sure you include a wide array of vegetables, especially the ones with anti inflammatory properties like celery and broccoli etc etc. These diseases have been an insane ride, and have made me sorely aware doctors in general still don’t know nearly enough.
Hi Kitty! I can see you got your share of the ride on the Lyme carousel! I am glad to hear that your condition improved and that you are followed up by a specialist. Lyme brings a lot of changes and challenges into one’s life. And yes, mold is not helping the healing process. Where you on antibiotics during the pregnancy?
My husband was undiagnosed for over 2 years, (bullseye and all )i finally went to the doctor with him, we all sat down, talked, and a lymes test was done and was positive. But for the 2 years before that my husband had debilitating symptons. He would get full body hives when stressed, flu like symptons, electric sensations in body, chills, sweats, palpitations, neck pain, swollen joints, horrible headaches and massive confusion (fog), and vision problems. After several rounds of antibiotics, steroids,full change in diet, nothing changed, he felt he was losing his mind, his PcP perscribed him antidepressants (which made head symptons worse), sent him to a cdc doctor after a year and she said he was cured of the lymes, he needed to see dermatologists, orthos, p.t.s. . nothing as changed since he seen the cdc doc. In fact he now has involuntary shaking of right arm and he’s having a bad(flare-up) of joint pain, headaches, weakness, so I made him an appointment with a internal meds doc that specializes in lymes . He has to get some blood work done and he sees the doc in may. I’m hopeing he can do something for my husband.
Hi Heidi! Thank you for sharing your husband’s story. I do hope that you will manage to have him treated by a Lyme specialist. Maybe that internal meds specialist will tailor a treatment that would help your husband and have some of his symptoms decreased.
I feel your pain my dear. You are so young. This started with shocks and weakness / numbness at 45 for me, but I also got 3 children, one baby and one severely disabled boy too. Im desperate as well. I wish you all the best Amelia.
Hi Debbie! Happy New Year! Thank you for your kind words. Lyme, like any other illness does not care about age, race, gender. I wish you lots of health and strength cause it ain`t easy being in your shoes!
Hello I just came across your blog. I’ve been researching symptoms for a very long time. Every one of the symptoms you shared, I have plus more. I’ve seen rheumatologist, Nuerologist, and an orthopedic surgeon. I have an appointment with an internist Thurs. Praying he listens to me and does the tests to confirm my suspicion. I think my worst symptoms would be my heart beating so hard for no apparent reason and/or what I call fluttering, neck headache (what I call it because the pain seems to come from my neck and go up into my head.), And the nerve pain/sensations/spasms/itching.
Hey Angie! Thank you for stopping by and leaving a comment! I hope the internist will ask for the tests. Though keep in mind that you can always get a false negative results. Keep a diary of your symptoms, that will help you keep track of them and make it easier to see if they aggravate or improve. Have you asked your physician to check your heart as well? Also, are you familiar with DMSO? if not, you may want to read this article: https://a-zlyme.com/dmso-lyme-disease/ – you may find it helpful.