Patient Comments: Lyme Disease - Symptoms


What were the symptoms you experienced with Lyme disease? Did you think it was something else? Submit Your Comment

Comment from: Jersey Girl, 35-44 Female (Patient) Published: October 03

I never saw a bite or rash, but out of nowhere became dizzy, nauseous, fatigued. Several doctors told me it was allergy/ear congestion - then came fever, joint pain, weakness, shortness of breath, and anxiety. My primary care physician diagnosed Lyme but 10 days doxycycline was not enough. Another 11 days did the trick, but brought major anxiety and Herxheimer reaction. All clear tests now but still some lingering dizziness and joint pain. Interesting to see so many say dizziness here, rarely listed as a symptom but was my main one.

Comment from: Jodom, 35-44 Female (Patient) Published: October 04

After having severe headaches and neck pain for about a week, I ran my hand through my hair along my neck line and found a large knot. I had my husband look at it and he immediately saw the bull’s eye. I went to the doctor the next day and was started on treatment for Lyme disease. My headaches get so severe I can hardly function; dizziness, high blood pressure, rapid heart rate, neck stiffness and severe fatigue along with joint pain are all symptoms I have experienced. I am hoping the treatment will begin to work and I can soon see a difference. I do not remember a definite tick bite and never found one on me. I'm not a complainer and can withstand much pain, but this is scary and has brought me to tears in pain.

Comment from: Tick, 25-34 Female (Patient) Published: June 28

I got sick quickly with severe headache, 103 fever, chills, and could barely walk. Two days into it I found a red area behind knee. I went right in to the doctor and they promptly put me on drugs for Lyme disease and sent my blood out for testing. I was very sick. After taking medicine along with Tylenol and Advil, within a day or two I felt much better. Of course it was positive; acute Lyme disease.

Comment from: Premila, (Patient) Published: January 07

My symptoms started with lower back pain which progressed to pain on my left side shooting down my leg and left arm, neck and shoulder. As time progressed, I started feeling ill, fatigued, and I thought it was my thyroid. I feel really ill. My arms and legs feel heavy, and I have body pains, joint and muscle pain. Sometimes I wake up in the morning with stiff fingers and arm pain which feels like arthritis. My doctor refuses to test me foe Lyme disease. I had a field control therapy test and the practitioner said I tested positive for Lyme infection. I feel sick all the time and sleepy. I am unable to move much around the house and unable to go to work. Reading your stories gives me some encouragement that maybe there is some hope for me. I feel like I am dying.

Comment from: ScienceGal, 45-54 Female (Patient) Published: October 23

I had pains in my swollen fingers on Saturday. Sunday morning I felt my face numb on one side and my knees ached really badly. I felt stiff and sore all over. Monday morning I woke up with a real bad headache. It felt like my brain was swelling and I felt sick to my stomach by afternoon. Monday night I took a warm bath and found a tick in the water. I could barely move my stiff neck. I didn't find a bit location on my body, but kept the tick to show my doctor. Tuesday morning I saw my general physician. She was very reluctant to give me antibiotics until the test came back positive 7 to 10 days later. So the Lyme’s disease symptoms came on very fast and strong after contact.

Comment from: tezza, 55-64 Male (Patient) Published: September 06

I am not sure if I have Lyme. I had the useless tests of blood. I am told it must be tested overseas. But from the start vertigo was real bad, got sweating up and vomiting, sudden deafness in 1 ear, body pains over the top with chronic fatigue syndrome 24/7. I have bladder and bowels problems to the point incontinence aids must be used. I never felt so degraded in all my life. It seems like something is getting into body cells. Even both large toenails had fungal infection for about 9 to 10 weeks and both cleared at the same time on their own. I am sure hospitals here will put me down as having fibromyalgia. Some years back I did have a sore on the wrist. Came out of the blue, very red and so round. After a few weeks it got itchy. I put bio cream on it twice, and a fine layer of skin came off it. I wonder if a tick bite acts like this.

Comment from: Paegan, 65-74 Female (Patient) Published: July 30

I already have diabetes, high cholesterol and blood pressure, a heart stent, and hypothyroid, and on medications for all. A sudden attack of vertigo, severe vomiting, a soaking sweat, and inability to hear sent me to the emergency room (ER). No diagnosis was available, vomiting stopped, and vertigo remained, as did 100 percent hearing loss in left ear. I was walking like a drunk, had aches, pains, etc. I went to an ENT. I also had MRI, a brain scan, blood taken five times, steroid shoot in the ear, and ankle braces. I have an appointment with a neurologist soon. General practitioner said let's test for Lyme’s, and sure enough it was acute Lyme’s disease. I am on antibiotics, but little improvement; still deaf, still hurting, not finished medicines yet. Hoping for healing.

Comment from: missy, 55-64 Female (Patient) Published: January 08

I contracted Lyme disease in 2009. My husband and I had been on a camping trip for a week. I got a bite on my foot and it swelled up a little but I thought nothing of it. About 4 days after we got home I felt like I had the flu. About 2 days later I got up one morning and my body was covered with bull eyes, at least 20 but not where I was bit. I called my doctor and was told to keep an eye on them! I panicked and went to urgent care. One look and the doctor asked if I had been bitten by a tick. I never saw a tick but she did the blood work for Lyme which came back positive. She put me on antibiotics even before she got the results. I then went to my primary care because the antibiotics made me sick. He said to stop taking them. Here I am today writing this with severe joint pain, swollen glands, horrible headache, you name it! I am so fatigued all I want to do is sleep. I see my primary care this week.


Lyme Disease See pictures of Lyme disease and other bites and infestations See Images
Comment from: unnoticedbite, 65-74 Male (Patient) Published: December 06

I found a large reddened area on my left inner knee. I saw no hole or bite area. The area swelled and ached. It would swell more overnight than during the day. Thinking it was a spider bite, I waited for the redness to disappear. That took a month or so. I still had knee pain and what seemed like water on the knee. This could be minimized by massaging the area under my knee. I went to see the doctor when pain would wake me up at night. Blood test showed Lyme disease and doxycycline was prescribed for 28 days. After three days I felt better, no pain or swelling.

Comment from: Whiyey, 7-12 Male (Caregiver) Published: October 31

My son was treated for ringworm this past August. Then he had headaches and pain in his right knee. All these occurred at different times. Then the first week of September my son jumped off of a step and seemed okay but later that night he woke up with terrible pain in his hip, so I gave him the junior strength ibuprofen which seemed to take the edge off the pain. Then I called our family doctor first thing in the morning and they sent us out to the hospital where they did X-Rays and a CAT scan, which showed lesions on his tibia and a pouch that formed in the same area. So then they sent us to the orthopedic specialist. The specialist put my son on crutches and then set up an appointment with the crippled children’s specialist who saw the same thing the orthopedic specialist saw. So my son was told to be on crutches until November 1st. About a week later my son woke up with a little pain in his right knee and by the time he came home from school he could barely even walk with the crutches and his knee was the size of a grapefruit and kept giving out on him. So I had our family doctor look at his knee and right away they made me take my son out to the hospital to the orthopedic specialist and no one could figure out at first how such a small jump could injure him like that. Even heating pad, Ace Bandage and propping his leg up did not bring the swelling down. About an hour later the doctor came in and said we are 98% sure your son has Lyme disease. So then they asked the questions if there were any rashes and as I started telling them about the ringworm the conversation went on about his fevers and body pains. So they took a couple of tubes of blood and yesterday they called us and said my son is positive for Lyme disease. So the doctors are starting his treatment with amoxicillin for 21 days in hopes this will be the only treatment he needs. I never ever would have thought it was Lyme disease.

Comment from: Fuzzy Thinker, 45-54 Female (Patient) Published: October 08

Dizziness was my first symptom of Lyme disease, along with fatigue. I was a busy person working full time and raising 2 boys and thought I was tired because I didn't sleep much because I was always running here and there for my family, job, etc. In September 2012 I stood up and was so dizzy I sat right back down. I went to my primary care physician and she thought I had an inner ear problem and set me to an ear, nose and throat specialist. He gave me some exercises to do, but it only made me feel worse. I went to my eye doctor because I was experiencing headaches (some migraines) and fuzzy thinking. He sent me to an eye surgeon and no one could find anything wrong with me. I thought I must be going crazy. The symptoms always seemed to be worse when I was tired or stressed. In December that year I was tested for Lyme's and was given an MRI to see if I had a brain tumor. I started on antibiotics and then came down with a high fever, chills, aches everywhere and extreme fatigue around Christmas. It was down hill from there. I spent 4 months taking supplements, probiotics, and vitamins, to boost my immune system back up so that I could get on IV antibiotics in April. I'm back to work now, but I still feel tired daily and spend some time napping after work almost daily. I bought a hyperbaric chamber and use it about an hour a day. I'm hoping to someday not have any symptoms at all, but I still suffer from dizziness, fatigue, joint pain, fuzzy thinking, and memory loss. I was diagnosed with Chronic Lyme's Disease and have probably lived with it for over 15 years. I am also diabetic, have low blood pressure, and suffer from migraine headaches and muscle tension. It's no picnic, but it is treatable.

Comment from: open eye, 55-64 Male (Patient) Published: December 17

I went to the doctor about 4 years ago. All of a sudden, I couldn't sleep. I don't remember getting bit by a tick but I went to the doctor because I was depressed and full of anxiety, and couldn't sleep. So he did a blood check and said Lyme disease. I was told to go to the CDC (Center for Disease Control and Prevention) and they did blood work up and said I had a false positive report. All I know is 4 years later I take medicines to sleep, am always tired through the day, my neck and shoulders are in constant pain, and my knees hurt.

Comment from: M Maguire, 45-54 Female (Patient) Published: June 25

Everyone said it was brown recluse spider bite but the pictures I looked at did not look like my marks. I never saw the tick or spider. I woke up with a burning sensation on my shoulder and my friend said spider bite. I swabbed it with peroxide and baking soda and put some ice on it. Three days later I had an enormous bull’s eye and I ached, felt exhausted, and had head ache. I never had a fever with Lyme disease.

Comment from: lori g., 45-54 Female (Patient) Published: May 12

I’m so tired. I have constant aches and pains... every joint in my body. I have headache, dizziness, just feel awful. I am being treated with doxycycline for 14 days (on my 9th day) and haven"t been diagnosed with Lyme’s yet but I know better. Everything I’ve read makes me sure. I have a painful hole on the back of neck which isn’t healing and I’m really scared. I went to the doctor yesterday for a follow up, haven"t heard anything yet. Am I going to die! Sure feels like it.


The term arthritis refers to stiffness in the joints. See Answer
Comment from: rockman, 65-74 Male (Patient) Published: December 30

I am in Australia, I have been bitten and injected by a tick in the back of the head. I have read countless reports about Lyme disease, I believe I am in the late stages of the disease. I have terrible pains in the joints of the hands, ankles, knees, back and neck, intermittent headaches and dizziness. I am a retired stonemason and have always been fit, the fatigue is unbearable. I also suffer from short term memory loss. So experts here in Australia that I have been to, say Lyme does not exist in here. I have been in the bush all my life and have never had a problem from ticks until the last three months. The depressing part about it is there seems to be no relief from the serious symptoms, perhaps the medical people who knock the existence of the disease need to get their heads out of the sand or walk a mile in my shoes.

Comment from: 55-64 Female (Patient) Published: July 23

I was diagnosed with lyme three weeks ago. for three years I would develop a terrible rash but only on my arms. It was extremely painful and itchy at the same time. went to several drs. but never a diagnosis. this year I had numbness in my feet. the joints in my fingers popped when I closed and opened them. I developed a fever, a dry cough and pain in my back. blood tests showed I have lyme disease. I have been on an antibiotic for three weeks. so far no rash on my arms. I wish this test would have been done three years ago. I still have the cough.

Comment from: mommaofALT, 25-34 Female (Patient) Published: May 16

I just tested positive for Lyme. I went camping last fall and removed a tick. I got super sick after that tick bite with a horrible headache, body aches, upset stomach, and I couldn't walk without feeling exhausted. I ended up in the ER, but the doctor didn't think the tick caused the issue, because the Lyme test was negative. Fast forward to now. My skin broke out in huge welts, which I thought were from an antibiotic I was on to treat a kidney infection. I went to my doctor, who wanted to run a Lyme blood test. Sure enough – it was positive. I have psoriatic arthritis, so I have no clue if I have joint pain from Lyme or from my other condition. My joint pain has been very mild. I am hoping it was caught early. The only other real symptom I have is the rash and a swollen lymph node in my armpit.


What Is Lyme Disease? Symptoms, Rash, Treatments See Slideshow