The first symptom of Lyme disease (also called Lyme’s disease) for about 50% of people is a small, red bull’s-eye rash, called erythema migrans, at the site of an infected tick bite. The rash usually appears a week or two after a painless bite, but can appear within 3 to 30 days. It typically spreads or may show up in other areas. It can also not look like a bull’s eye. And if the tick rash is very small and in a hairy place, it may never be noticed.
Other early, acute symptoms are flu-like – fatigue, achy muscles or joints, fever, chills, stiff neck, swollen glands, and a headache. Most doctors base their diagnosis of early Lyme primarily on the rash and accompanying symptoms. There are blood tests, many of which return erroneous results. We’ll have more to say about testing soon.
If Lyme is identified in this early stage and treated with an appropriate course of antibiotics, it usually goes away. Treatment, however, doesn’t provide immunity; you can get the disease again if another infected tick bites you. There is no vaccine.
It would be great if Lyme got caught early and treated in everyone who has it. But it’s a very tricky illness.
Some people with classic early symptoms never get treated because they either don’t go to their doctor or their doctor doesn’t suspect it. Some doctors do diagnose it but don’t treat it long enough. And some infected people never get any early symptoms.
Lyme is often hard to diagnose because many symptoms are non-specific (stiff neck, fever, tingling and numbness, headache, lack of energy, weakness, moodiness, or achiness). Also, many doctors don’t know much about the disease or don’t believe that it’s a prevalent illness, especially in areas that aren’t known to be habitats for the Ixodes ticks that carry it.
Without treatment, the illness eventually becomes more debilitating.
Untreated, the bacteria can lie dormant and appear months or even years later. Chronic Lyme mimics the symptoms of over 350 diseases, including multiple sclerosis, lupus, Rheumatoid Arthritis, and Parkinson’s. Sadly, many people with chronic, late-stage Lyme spend years and substantial sums of money being treated for other diseases before finally learning that they have it.
Chronic Symptoms
Most people chronically ill with Lyme have a combination of symptoms, compounded by the symptoms of other co-infections they may have. No two patients have exactly the same complaints.
The spirochetes travel from the site of the bite to anywhere in the body via the skin, lymph system, and blood. They can ultimately cause problems in all body systems.
Credit: Michael Abbey/ Photo Researchers, Inc. - Borrelia burgdorferi bacterium in a blood smear
Here’s a plain-English list of common symptoms:
Brain and Central Nervous System: migraines, dizziness, brain fog, poor memory, poor sleep, lack of verbal fluency, confusion or disorientation, decreased ability to concentrate, facial nerve tics or paralysis, sore jaw, sinusitis, mood swings, difficulty chewing or swallowing, sore throat, hoarseness, muscle twitches, numbness and tingling, shooting pains, and lower back or neck pain. Lyme has also been found to mimic all the psychiatric disorders.
Muscles, joints, and bones: pains that come and go (with or without swelling), cramps, stiffness.
Circulation: too fast or two slow heart rate, irregular heartbeat (palpitations), inflammation of the heart muscle or arteries, and chest pain.
Breathing: sinusitis, difficulty breathing, and pneumonias.
Skin: rashes, itching, crawling sensations, benign cysts and nodules, and skin discoloration.
Eyes: pain, inflammation, blurred or double vision, retinal damage, floaters, flashing lights, light sensitivity, dry eye, and blindness.
Ears: itching, earache, buzzing, ringing, and sound sensitivity.
Digestive tract: nausea, vomiting, diarrhea, constipation, loss of appetite, mild liver function abnormalities, and spleen tenderness and enlargement.
Genitourinary tract: inflammation of the urethra and bladder, pelvic pain, testicular pain, and loss of sexual desire.
General: tiredness, lack of stamina, fever, vague discomfort, irritability, nervousness or anxiety, and weight loss or gain.
Borrelia is a brilliant bacterium that can avoid detection by the body’s immune system by changing shape, becoming cell-wall deficient (living inside red blood cells) or encysting over with albumin, which antibiotics can’t reach, and hiding out in a dormant state in hard to reach places like the spaces between ligaments and bones.
If you suspect your or someone you know has Lyme, you should find a doctor who knows how to diagnose it correctly and treat it adequately if you have it. The earlier you get treatment, the better.
Lyme is not just another little infection that goes away in a week or two; people have died from it.
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20. April 2012 at 8:35 pm
I was diagnosed with Lyme in 2008 while living in Massachusetts. My first symptoms were chest pain and a week later I developed the bulls eye rash, which helped my doctor diagnose it. Spring 2011 I was sick continuously for a month and finally convinced my doctor to treat me for Lyme because the symptoms reminded me of when I had it in 20008. They suspected it was too early for the Lyme to show up in blood work, so no testing was done to confirm, but the usual two week treatment did the trick. Now I’ve been sick again for about a week and I can’t help wondering if this could be chronic Lyme. I was told last spring that my Lyme was definitely a new case because more than two years had passed since my first case – is that true? I’m now living in Virginia and wondering if I should see a specialist.
20. April 2012 at 8:53 pm
Ashley, two weeks of antibiotics rarely cures Lyme. You could have had it since 2008 and not experience symptoms until it reached a threshold and popped out again recently. I do think you should see a Lyme specialist. Please find someone who knows how to diagnose Lyme correctly and treat it adequately so you can get rid of it, not limp along for years having it come and go. Your body can only play those games for so long until you really get sick and it messes up your life big time. Glad you asked. I’m sending you VA info.
20. April 2012 at 4:12 am
Hi Pam,
would you happen to know of any doctors who are helpful to test for lyme in Queensland, Australia? I was bitten 8 years ago and didnt think about lyme until recent news explains lyme is found in australia. I have had many symptoms over the years, many of which are in the list above, and may of course be attributed to other illnesses, but its always good to continue with the process of elimination.
Thanks for your help.
20. April 2012 at 8:19 pm
Australia Lyme info is being sent to you shortly. Thanks for asking, Natalie.
20. April 2012 at 1:49 am
I’ve been getting a bullseye rash, 4 times/yr, for 18 years. I had no idea, until recently, that it was anything to be concerned about. I have many symptoms…extreme dizziness, hair loss, memory loss, confusion, loss of concentration, aches and pains…including shooting pain in my left leg & head, ringing in ears, chills, fever, sweats and more. I was bitten on my the back of my left leg. Most aches & pains occur on my entire left side. I’ve never taken a picture of my rash, because I didn’t think it was important. My rash won’t reappear for another 3 or 4 months. I now have brain fog. Even though my symptoms have appeared minor, all these years, the brain fog is terrible and strong. This just started 5 weeks ago and is ongoing. The only blood test I’ve had, came back negative. From all the researching I’ve done on LD, I knew it would. The antibiotic I was taking, helped all symptoms so much. No more pain & discomfort. However, the brain fog worsened, so I quit taking the medicine. Wondering if I should have done that? Also, rash won’t reappear while I’m taking antibiotics. I need to take a picture of it.
Could you please send me a list of LLMD’s in the Fresno, Ca area?
Very informative post & comments.
Thank you so much for this post.
20. April 2012 at 8:11 pm
CA Lyme info is on the way, JaeElle. Lyme is cyclical, so your repeated rash isn’t surprising. Please see a doctor who knows how to diagnose Lyme correctly and treat it adequately if you have it. You may also have one of more co-infections that often come with Lyme – Babesia Bartonella, Ehrlichia, or Anaplasmosis. Most people with Lyme have at least one. Thanks for asking.
19. April 2012 at 9:29 pm
Hi Pam, please send me info on lyme doctors in or near Nashville TN. a tick bit me a few days ago, the rash is growing, so i want to find a doctor that knows about this disease. Thank You !
20. April 2012 at 8:05 pm
TN Lyme info coming up, Maria. Thanks for asking.
19. April 2012 at 2:26 pm
im not sure if reading this article was a relief or more of a scare. i’ve been suffering with anxiety for about 2 years now which started suddenly, and since then has barely calmed down, instead has gotten sooo much worse, but with this exactly for at least the past 8 months i have also developed floaters in my eyes, rings of light in my peripheral vision, sensitivity to sound. And in a way i feel as if i have received my answer as to why this all may be happening but im not sure. I live in Northern NJ, in union, and in my back yard we actually have woods. So i guess ticks do live there. I would like to know if this is lyme disease, and lets say it reached my brain which has caused all of these miserable symptoms, is it reversible? like can i actually cure all of this? or will i go through this the rest of my life? Please send me information on any llmd’s in my area and what tests i should be tested for. Thank you soooo much!
19. April 2012 at 5:08 pm
Tiffany, it is possible to get rid of Lyme. The longer you’ve had it, however, the longer it takes and the more complicated treatment gets. I’m sending you NJ Lyme info so you can find a doctor who knows how to diagnose and treat Lyme correctly. The current gold standard test is by IGeneX. If anyone tries to give you the CDC test, head for the hills! It’s highly unreliable, reporting a lot of false negatives. Thanks for asking.
18. April 2012 at 9:18 pm
Hello Pam,
I am experiencing many of the symptoms of Lyme and have been for some time. I have been bitten by ticks in the past, mostly in Virginia. I have been tested for Lyme a few times but with negative results. I do not know what kind of test it was. My symptoms are getting worse, mostly light headedness, lack of concentration, fatigue, joint pain, also my eyes seem more sensitive to light. Could you please send me information on the experts in the South Jersey Area (Cherry Hill, Voorhees Area). Your blog has been very informative.
Thanks,
Ron
19. April 2012 at 4:55 pm
NJ Lyme info coming up, Ron. Glad to help. Please do see a doctor who knows how to diagnose Lyme correctly and treat it adequately if have it. Thanks for asking.
16. April 2012 at 8:00 pm
Hi Pam! Could you please send me Lyme Dr info for in or around Boston Ma? Thanks so much!!
17. April 2012 at 2:25 pm
Tammy, I’m sending MA Lyme info ASAP. Thanks for asking.
16. April 2012 at 4:54 pm
About 6 years ago I had a tick bite. I grew up in the country and got them all the time so thought nothing about it till about 1 to 2 weeks later I started to have real bad cold sweats and nightmares and no energy, loss of appetite, bad headaches. Felt like I was getting the flu. So I went to the doctor. He asked if I had been exposed to anything and I remembered the tick bite so I told him and then he gave me a prescription for the tick bite that lasted about 1 week. The cold sweats and fever went away. But I have since have been treated for migraine headaches, anxiety, and fatigue. Had to have my gallbladder removed due to severe gallstones that happened less then a year after the tick bite. I was diagnosed as having Bipolar Disorder due to mood swings and irritability. I have also gained 70 lbs since this. I was 110 lbs before this now; i’m 180 lbs. I have no energy and sometimes will go days without getting out of bed or leaving the house. So I guess my question is could I still have something going on dueto this tick bite?
Thank’s Michelle
17. April 2012 at 2:10 pm
Michelle, like thousands of other people with Lyme, you probably weren’t given enough antibiotics to get rid of the Lyme, which means you still have it. And you may also have one or more of the co-infections that come with Lyme – Babesia, Bartonella, Ehrlichia, and Anaplasmosis. Most people with Lyme have at least one, which also needs to be treated.
If you tell me where you live, I’ll send you info on how to find a Lyme specialist. Thanks for asking.
19. April 2012 at 3:21 pm
I am from Columbia Missouri. Thanks so much Pam!
19. April 2012 at 5:14 pm
MO Lyme info is on its way. Thanks, Michelle.
15. April 2012 at 9:53 pm
Can You Please Send Me Info For Oregon… I am sick of feeling this way and being told there isn’t anything wrong… Thank You For Your Help…
Manda
17. April 2012 at 1:55 pm
OR Lyme info is on its way, Manda. Thanks for asking.
14. April 2012 at 4:41 pm
My dr. Says because all bands on my Western Blot did not come up positive then I do not have Lyme. However, I suffer from numerous symptoms and would like to request your info for specialist in my area. (Southern IL..St. Louis, MO) Thanks!!
17. April 2012 at 11:14 am
Resa, I’m sending Mo Lyme info ASAP. As you probably already know, Lyme testing is not reliable, especially the CDC tests most regular doctors use. Thanks for asking.
13. April 2012 at 9:44 pm
hello pam, i am 24 years old and i live in new york. i have been sick for many years now and things seem to be getting worse. i have been tested for Lyme disease before but it has been negative. i have pain in both of my lower legs,lower back pain, nausea,headaches and most recently fevers everyday and you name it and i have the symptoms i have them. things have gotten so bad to where i can’t hardly walk anymore. i have seen at least 15 to 20 different doctors and they cannot find out what the problem is. i have had more blood tests to count and Ive even had cat-scans and MRI’s. is it possible to get Lyme disease without a tick bite? could you please send me more info on Lyme disease or if you have anything to recommend that would be most helpful thank you!
16. April 2012 at 4:50 pm
Ashley, many people with Lyme don’t remember a tick bite. There is evidence that you can also get it from other infected biting insects like mosquitoes, mites, midges, flies, fleas, and spiders, although you won’t see anything official on that. I’m sending you NY Lyme info so you can find a doctor who knows how to diagnose Lyme correctly and treat it adequately if you have it. I’m guessing the Lyme tests you’ve had are from the CDC. They’re unfortunately very unreliable, reporting a lot of false negatives. As for Lyme info, there’s lots of it online, including this website. Thanks for asking.
13. April 2012 at 8:26 pm
I have been sick since a visit to WI four yrs ago. Was diagnosed w/lyme 9 months later. Since I have continued with being sick–rash, joint & muscle issues, neurological problems, heart racing (even required heart ablation). Just nothing on me works right & lately has been having seizures. Please help! I need a lyme doctor in my area–Nebraska. Thanks!
16. April 2012 at 4:29 pm
NE Lyme info is being sent ASAP, Tami. Please do find a Lyme specialist, even if you have to travel. You don’t say how much treatment, if any, you’ve had. Or whether you’ve been tested for the co-infections that often come with Lyme – Babesia, Bartonella, Ehrlichia, and Anaplasmosis. Most people with Lyme have at least one of these too. Thanks for asking.
13. April 2012 at 7:32 pm
Hi, I have lived in Lyme, Connecticut for the past nine years. I recently found what something on my torso that appeared to be clear with a blackish line in it. I scratched it off and now, approx. three weeks later I have what appears to be a bulls eye rash in the same place on my torso. I’m sure it is Lyme. I do not have insurance and am wondering if there are any alternative treatments other than doctors/tests/prescriptions (all of which I cannot afford without insurance coverage). I will be eligible for insurance in May. Will it be harmful to wait until then to be treated?
16. April 2012 at 4:25 pm
Lisa, the longer your wait to get treated if you have Lyme, the worse it gets and the harder it is to get rid of. I’m sending you CT Lyme info so you can find someone who knows how to diagnose it correctly and treat it adequately if you have it. There are naturopathic doctors who don’t use prescription drugs. And there are some treatments you can do yourself, although most aren’t sufficient by themselves without some help from antibiotics too. But first, find out if you have Lyme. Then you can consider what path to take to get it treated. Glad you asked.
13. April 2012 at 5:11 pm
Could you please send me info on lyme doctors in the Pensacola, FL area?
16. April 2012 at 4:18 pm
FL Lyme info coming up, Dana. Thanks for asking.
13. April 2012 at 10:50 am
Hi Pam,
Would you please send info for doctors in South Carolina. My daughter has been in and out of doctors and hospitals for years with many of these symptoms. She has extream cases of swollen glands in her neck that are so large it looks like mumps,prior to the swollen glands she has stiffness of the neck for about a week. It returns about every 4 months. They have done all kinds of blood work but it returns nothing. She was diagnosed with arthritis at 19 years old. sever bouts of fatigue. Although she was honor roll student, she now has alot of memory and concentration problems. She was bitten twice by ticks as a child, but I never saw a bulls eye rash. Thank You, this might be the answer I have prayed for.
16. April 2012 at 4:15 pm
SC Lyme info is on its way, Sandra. Your may have to travel to find competent Lyme care for your daughter. Thanks for asking.
13. April 2012 at 8:07 am
We just confirmed last Monday that my husband had Lyme disease after 15yrs of symptoms and searching multiple docs for the answer. We live in the Fort Worth, Tx area but went through a medical clinic in CA for the testing. We were told this was a new test out that actually does a culture. If they can grow it, you have it. Here is the test/lab info:
Basic Borrelia Culture and Immunostaining
Advanced Laboratory Services
We will be looking at treatment options. Could you give us doctor info for our area? It would help to have a local doctor to deal with.
16. April 2012 at 4:41 pm
You must be relieved that your husband finally has a definitive diagnosis, Cheryl. I do know of the blood culture test from Advanced Lab Services. It’s nice to see confirmation that it works. Thanks for the recommendation. I’m sending you TX info so you can find a doctor who knows how to treat Lyme adequately. Thanks for commenting.
11. April 2012 at 10:18 pm
HI Pam. I have been suffering from many of the symptoms for years but they come and go, taking turns. I have a lump on my neck. My doctor told me it was a swollen gland and it would go away, but it seems both glands take turns swelling. I don’t go to doctors, because they never seem to know what is going on. It seems they are playing a guessing game. I can find out more info myself online. My daughter may be showing some symptoms, too. We have all had tick bites, living down South. I would like more info and a list of specialists in my area if possible.
Thanks.
12. April 2012 at 8:13 pm
I’d be glad to send you Lyme info, Pam. Where do you live?
11. April 2012 at 2:12 pm
I’m just now getting test results from Igenex, and want to learn all i can.
Please send me information pertinent to Arkansas (where i live now) and Virginia (where i grew up). I’ve also lived in North Carolina, Hawaii, Indiana, and Missouri, however, i don’t recall being bitten by a tick anywhere but Virginia.
My doctor IS literate in this (thankfully) and I know he will walk with me thru this. But, I need to be involved. I want to learn all i can.
Thanks.
11. April 2012 at 4:15 pm
Sharon, the info I send is how to find a Lyme doctor. There isn’t different information on Lyme Disease per se for the various states in which you’ve lived.
I’m sending you Arkansas info so you can join an online Lyme forum, the best place to learn about Lyme — from people who have or have had it.
Thanks for asking.
11. April 2012 at 10:32 am
DON’T KNOW IF I HAVE LYME OR NOT, HAVE HAD A VARIETY OF SYMPTOMS FOR YEARS THAT COULD BE LYME. I AM IN THE NORTHEAST AND IN THE WOODS A FAIR AMOUNT. I WAS TREATED FOR ATRIAL FIBULATION 5-6 YEARS AGO, IT HASN’T RETURNED BUT NOW I AM WONDERING IF IT COULD BE CAUSED BY LYME CONTRACTED YEARS AGO. MY REAL QUESTION IS THIS: CAN A LYME TEST NOW, YEARS AFTER POTENTIALLY CONTRACTING THE DISEASE, DETERMINE WHETHER I HAVE IT AND IF SO CAN IT BE TREATED? PLEASE RESPOND TO MY EMAIL. THANKS!
11. April 2012 at 4:12 pm
Art, yes and yes. A Lyme test now can determine whether or not you have it, even years after you first got it. If a doctor determines that you do have Lyme, it can be treated.
If you’d like info on how to find a Lyme specialist (i.e., someone who knows how to diagnose Lyme correctly and treat it adequately), let me know where you live and I’ll send it. Thanks for asking.
9. April 2012 at 11:38 pm
Hi Pam. I’m in Washington State. My girlfriend has been suffering from something undiagnosed for some time now and is getting worse, now with light sensitivity (sun “echoes”) and what she describes as “brain zaps”. She’s been keeping a list of her symptoms. I just plugged them into a search and they all come up under lyme disease which, to be fair, has A LOT of symptoms.
She was prescribed antibiotics for a bladder infection about two months ago or so – would that be enough to kill the bacteria? Lyme is supposed to be rare here so I don’t think she’s been tested for it. Any recommendations would be great. Thanks.
10. April 2012 at 3:55 pm
Tobi, I’m sending you WA State info for your girlfriend. A short course of antibiotics for a bladder infection would not be enough to kill Lyme. Depending on the antibiotics, it might not touch it at all. Lyme isn’t as rare in your state as doctors and the media might say. I get lots of requests for help from Washington. And there are more than a few Lyme support groups. Thanks for asking.
9. April 2012 at 8:47 am
Could you send if for LLMD in WI? Thank you.
9. April 2012 at 4:51 pm
WI Lyme info coming up. Thanks for asking, Sara.
7. April 2012 at 6:32 pm
Could u plz send me info for a MI LLMD I have tested positive for Lyme and my dr don’t know crap about it Ty soooo much
8. April 2012 at 11:14 am
Mi Lyme info coming up, Amber. Most doctors don’t know cr*p about it. Thanks for asking.
5. April 2012 at 5:57 am
Please send me info on lyme doctors in or near Clarion,Pa.
6. April 2012 at 11:29 am
PA lyme info coming up. Thanks for asking, Clay.
5. April 2012 at 1:35 am
Hello i have been having all the symptoms of lyme disease but no drs want to listen to me finally on my fourth dr and am getting a western blot “finally” i go tomorrow, and if it comes back negative or with one or two bands is that considered positive?? Please shed some light on the test results im very concerned with a non lyme dr reading the results. and do you know of any lyme drs in south jersey?? like voorhees area?? thank you so much(=
6. April 2012 at 11:27 am
Bre, the CDC Lyme tests aren’t reliable, reporting a lot of false negatives (meaning you have Lyme when the tests say you don’t). Then of course, as you say, there are doctors reading the tests who don’t know much about Lyme. The Lyme bacterium, Borrelia burgdorferi, is a tricky bug that knows how to trick the human immune system, so no Lyme test so far is 100% accurate. I’m sending you NJ Lyme info so you can consult with a doctor who knows how to diagnose Lyme and associated diseases correctly and treat them adequately if you have any. Thanks for asking.
9. April 2012 at 1:58 am
I would also like NJ doctor information. I had a heart transplant 3 years ago, 6 months later we moved and I was well on my way to a full recovery minus no immune system. About a month or two after we moved to a high tick area, I started feeling cruddy. Every time I am put on an antibiotic for something else, all my muscle and joint pain are gone. I don’t feel so tired and sleep 6-8 hrs and can still function all day. I have had the regular test and it was negative but I know my body. I also know without a dr that knows what they are talking about I am not going to get treated properly. My regular physician tried to treat heart failure as asthma, so more than anything I know going to the right dr is a must.
9. April 2012 at 4:49 pm
I’m sending NJ Lyme info shortly, Desiree. Thanks for asking.
2. April 2012 at 6:01 pm
I have had symptoms for about 9 months now beginning with “brain fog”, dizziness, headaches, and a stiff neck. Then I began having tingling in the back left side of my head and have persistently swollen lymph glands in the back left side of my neck. I began seeing halos and starbursts around lights, and anything reflective appeared to extend vertically with a “ghostly” image of itself. I also had my first floaters appear at this same time. My eye exam was normal, as was an MRI. I’m just beginning to have some peripheral flashes in my vision as well. I will probably get another eye exam as I haven’t had one since the initial onset of visual symptoms. But, I would really like to pursue the possibility of Lyme and would prefer not to sit down with another doctor that’s going to make me feel like I’m crazy. Could you send me some information on doctors in the Southeast Missouri area? I’m willing to travel, so the closest one(s) would be helpful…thank you so much for your help!
3. April 2012 at 12:49 pm
The eye issues you have all can be Lyme, Betsy (as well as your other symptoms). Eye doctors will see nothing suspicious. MO Lyme info is on its way. Thanks for asking.
11. April 2012 at 9:30 pm
I’ve read over the article and all these symptoms are simply frightening to what I’ve been suffering over the years. I’m currently in and out of Neurologists, Internists, and Psychologist.
Please, provide me will LLMDs that can provide me help and order the right tests in South Carolina. Thank you!
12. April 2012 at 8:00 pm
SC Lyme info is on the way, Christian. Travel if you must to find competent care. Thanks for asking.