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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27. October 2010 at 11:43 pm
Hi Pamela
I live in Australia and yesterday my doctor said that we should try treating my conditions (after 7-8 years) as Lyme’s. When i looked it up on the internet and read the other stories i just cried. I cant believe that it’s taken this long for someone to believe me and listen to what i have been saying – where no test or x-ray or scan shows any reason for my pain etc and i’m given more and more pain killers for something that they can’t see. The health department here in Australia say that we don’t have this disease here but cases are found all the time. As its not recognised, the test costs $500.00!!! My Doctor is treating me with the antibiotics and i guess we will just have to wait and see it this is the cause of all my pain!
28. October 2010 at 6:02 am
It seems Borreliosis (the technical name for this disease) is everywhere, no matter which species causes it. Unfortunately your story resounds around the world, Michelle. Unexplained symptoms most doctors don’t know how to diagnose and therefore mistreat. Public health organizations and medical insurance companies blind to the the epidemic that this disease has become. Expensive testing, much of it unreliable. And worst, family and friends who think your complaints are psychosomatic.
So happy to hear you’re finally on antibiotics. Let us know how it goes and if we can help any further. Please be patient. If you’ve had Lyme’s for a long time, it takes longer to get rid of it. If you haven’t done so already, get tested for Lyme co-infections. More money, yes, but very important. You won’t get better until those are handled too.
6. December 2010 at 12:19 am
Hi Pamela
I had a test the other day and yes it is lyme. High dosage of antibiotics is going well. Something i have stated to do is to write a diary of all my symptoms day by day to see how things are going for eg: energy levels, headaches, finger pain, back pain etc. This is something my dr wants to keep an eye on too. Thanks so much for all your valuable information and i will keep in touch.
6. December 2010 at 11:30 am
Great! Now you know what you’re dealing with, Michelle. Hope you’re also taking detox stuff to help escort those dead critters out of your body (dead Lyme is toxic; causes the Herxheimer effect, which you probably know about). Probiotics and herbal greens help a lot. I like your doctor’s idea about keeping a diary. I never did that, thinking that once I started treatment, it’d be a few weeks, or maybe months at the most, and I’d be all better. NOT! Here I am 5 years later still dealing with the aftermath of the wide range of problems Lyme causes. A diary would’ve helped to track where symptoms were coming and going. Don’t count on your memory to remember these things. Plus you should note what medications and supplements you’re taking. Some you may have negative reactions to. You’d want to know that so as not to take them again later down the pike if they’re prescribed again.
8. May 2011 at 12:40 pm
Hello,
I just found you as I, once again, turn to the Internet for help! On Valentine’s Day, 2006, I had a brain MRI to determine the cause of dizziness. The medical suggestions were, inner ear or sinus infection OR a brain tumor! Needless to say on March 2 I was relieved when my dr. reported I had a “deep” sinus infection. Unfortunately, she read that the report also said I had “lesions indicative of a disease such as Multiple Sclerosis.”
Since then my doctor-free lifestyle has slowly deteriorated into a pill-popping, barely-dragging through the day, one doctor after the other life of no hope, a fear burdened life of no return. I have changed Drs. to one who couldn’t believe no other tests had been done before the dx! She did more blood work but didn’t change the dx. Instead, I have been given harsher drugs including chemo for a mystery disease they have no cure for. I almost suspect my healthy body is being used as a control subject in some bizarre drug experiment!
Is there a Lyme disease dr. in East Tennessee?
8. May 2011 at 1:21 pm
So sorry for your continuing ill health, Brenda. I’m sending you TN Lyme info. I hope you find answers and relief soon.
Thanks for asking.
1. August 2011 at 10:01 pm
I have been experiencing a wide range of symptoms that come and go since returning from a trip from south africa this march. After a bunch of diagnostic tests everything came back normal. The only thing to be found was high strep level and recent exposure to mono in my blood work. After two courses of penicillin for 10 days my symptoms have lessened but some still remain. I’m starting to think it might be lyme but after two negative tests the doctors told me to move on. Could you provide a lyme literate doctor in the Washington DC area?
2. August 2011 at 10:40 am
DC Lyme info is on its way, Jess. Thanks for asking.
26. October 2010 at 8:01 pm
Great. Thanks for typing this. It is always great to see someone give back to the public.
26. October 2010 at 7:44 pm
I have late stage Lyme disease as well as 5 coinfections however i cant find anyone to help me….i live in Mn im broke and all i want to do is get better…… i keep being denied medical treatment what can i do im 32 and all i want is to live pretty soon im be completely disabled and paralized as lyme disease has destroyed my life……noone will help me as i have no money….
26. October 2010 at 7:59 pm
It’s very sad and maddening that most medical insurance won’t cover Lyme treatment. I’d suggest you locate the nearest Lyme support group. Naomi. Here’s one:
http://www.mnlyme.com. Do an Internet search on minnesota lyme group. Email or call to get support. Keep reaching out; there may be help you don’t know about.
27. October 2010 at 11:45 am
Naomi,
I live in WI on the border with MN and there are two doctors that are lyme literate in Winona and a couple more in the Cities. My doctor just came down from a practice in the Twin Cities. He could certainly help you find a doctor if you would like me to ask him when I see him on November 2. In the meantime, start taking 500 mg cats claw and 150 mg olive leaf extract three times per day. In two weeks this treatment alone got me feeling back in my right hand before I found a doctor.
Good luck!
28. October 2010 at 2:29 pm
Yes please ask him and please let me know his info as well..
28. October 2010 at 4:16 pm
Kurt emailed me the info and I forwarded it to you earlier today. Hope you got it. Keep us posted on your situation, Naomi.
25. October 2010 at 10:52 am
After a year of suffering from severe neck pain, debilitating headaches, fatigue, numbness in hands and feet, foggy mind, clumsiness, nausea, racing heart, dangerously high blood pressure, dizziness, and Bells Palsy on left side of my face, I finally found a doctor who would agree with my assessment of these symptoms that it is lyme. This was after an extensive battery of tests that ruled out everything else and multiple negative tests for lyme through Elisa, PCR (from blood), Western Blot (band 41 positive only), and other tick-borne diseases. My regular doctor diagnosed me with fibromyalgia and sent me home with fistfuls of meds to combat the pain.
Before I found the doctor I started taking cats-claw and olive leaf extract and in two weeks got the feeling back in my right hand. I then started seeing the doctor and was prescribed amoxicillin (twice daily)and azithromycin(3 times per week), as well as an anti-fungal and probiotic. Recent blood tests showed a very low, almost non-existant iron level but I am not yet anemic, so my doctor started me on a couple herbal treatments to raise my iron levels. I was most curious about this as I have given blood for years and never had any signs of anemia.
My question is this, I recently found information that a co-infection with babesia can cause low iron levels. Would this disease easily also show a false negative? I see that the treatment for this is azithromycin and atovaquone. Is there another way to confirm infection with babesia, or should I ask my doctor to treat me with the anti-parasite meds also? Do these symptoms and low iron indicate that I should be treated for babesia?
Any other suggestions regarding my treatment? My doctor seems very versed in the disease and I am hopeful that I will make a recovery, although he tells me it will likely be a year or more of treatment.
Lastly, regarding the babesia questions, can you refer me to some medical papers/sites that have more information that might help me?
Thank you very much.
Kurt Brownell
25. October 2010 at 2:24 pm
Sounds like you’ve got most of your bases covered with your new doc. Congrats! If you’re out of the woods and feeling like the old Kurt within a year, you’ll be one of the lucky ones. I’ve been at Lyme and co-infections treatment for 5 years now. Am definitely better but still dealing with what Lyme stirs up – secondary viral infections. I know others who’ve gone in and out of Lyme treatment for years.
Yes, I’ve heard others say they’ve finally gotten a Babesia diagnosis after multiple negative tests. Some doctors do treat for it in these cases, i.e., diagnosis-by-treatment.
I’ll rustle up some Babesia cites for you (there aren’t a lot) and post them in Lyme Resources here. Stay tuned. I’ll DM you when they’re up.
{Edit: See Babesia Resources page here – http://www.lymediseaseblog.com/babesia-resources/]
11. October 2010 at 9:11 am
my 18yr old daughter has been complaining about exhaustion,lowerback pain,and stomachaches for at least 11/2yrs.i first blamed it on teenage lifestyle,school,work,out to late and poor diet(fastfood).last month had the dr. do blood work.they said she had low iron non anemic.she started iron pills,said she feel better in about 2 wks.we went back last week.she is not feeling better.her back hurts more and she is even more tired(she was rearended in a car accident last week) the dr.was suggesting she has depression,which she does not.he reluctantly agreed to do another blood test.he tested for mono,rocky mt spotted fever and lyme. they called this morning and said she was positive for rocky mt and lyme.they are putting her antibiotic for 10 days.she has never had a tic on her body,never had any kind of rash.we live in n.c. she went camping almost 2 yrs ago.does that sound right to be positive for both? also can either be sexually transmitted? thank you for any insights you can give me
11. October 2010 at 10:19 am
It’s possible your daughter got bitten on her camping trip by a tiny infected tick she never saw and either had a rash she also never saw (perhaps on her scalp) or had no rash. The jury’s still out on whether or not Lyme is sexually transmitted, although it can be passed in utero.
Now you know that she has Lyme, she should also be tested for the 3 common co-infections of Lyme, Babesia, Bartonella, and Ehrlichia. Babesia lives in the red blood cells and usually causes anemia.
Also know that 10 days of an antibiotic may not be enough. If your doctor won’t prescribe more than that, you may want to look for another, Lyme-literate doctor who treats Lyme and co-infections with longer-term antibiotics.
Let us know how it all goes! Glad you finally know that you’re daughter isn’t just “depressed.”
6. October 2010 at 7:46 pm
hi, back in the early 90′s i was getting a lot of hand and some lower back pain. after going to doctor after doctor and getting surgery on 1 of my hands and it not helping much, taking all kinds of anti_depressents, they said i could have fybromialgia. i had a hard time keeping a job and finally went on disability. 6 years ago i moved to foxboro mass. soon after my dog got lyme disease, not to long after that, i felt like i had the flu, after about a week it seemed to go away. as time went on i can remember having a sensitivity to light, especially looking at comp.screen and watching tv. also was having blurred vision. a couple of years ago i started getting alot of gastro- intestinal problems, then 3 months ago i started getting pain in my knee ,then i got pain in my right forearm, then my other arm. the pain in my knee progressed to where i was limping. now the pain has spread through my whole body and i been having this nagging stiff neck, memory is bad and have hard time thinking. been to more doctors , lyme and other test have come back neg. i have had numerous ticks on me and found out that i live in a tick infested area and pulled 2 deer ticks out of me. after being back to work 4 almost 6 years ,recently i had 2 take a leave of absents.the reumatoligist says probably is fybromyalgia and sent me on my way, i tried to tell him some info i found out about and how test can come up neg. he didn’t want to here it, seemed to almost get angry and did not even help me. he even tried to make it sound as if my pain wasn’t as bad as i was telling him it was. i am having a hard time finding a lyme-literat doctor and hear that they are being percecuted by medical community and even some have gotton there medical lisence revoked. i found a doctor about 1 hour from my house and have been tring to contact him but so far he hasn’t returned any of my phone calls.
6. October 2010 at 8:18 pm
Parts of your story sound like mine, Ken. A rheumatologist called the stiffness in my fingers in the mid-1970′s fibromyositis. I lost the use of my left hand suddenly back in 1983 and no specialist I visited could figure out what caused it (I was not tested for Lyme then). One of the hallmarks of Lyme arthritis is migrating joint pain as you describe.
You didn’t say what Lyme test you had, but the standard CDC test is known for returning false negatives. Keep calling the new doctor until you reach him/her. Also look at our Lyme Resource page for how to get Lyme-literate doctors’ names from the online public Lyme forums. Yes, some doctors who treat Lyme are being persecuted so the Lyme patient community is very careful about not using their names online. But members will email you names if you ask.
7. October 2010 at 11:42 am
i am not sure exactly what test it was Pam, but i think it was 2 western blot test and 1 other test was differnt because they took it the hospital and it came back in 2 hours. all test were taken in the past 2 months. a friend also told me about cats claw and i am now tring that as well a special omega oil that has been known 4 helping with arthritis [omegaXL] FOUND ON INTERNET. thanks 4 the reply, and i will check out that research page ken.
24. September 2010 at 6:31 pm
Can symptoms of Lyme”s Disease lay dormant for years? I had Bell”s Palsy at 5 years old. I don’t believe I had any other symptoms. I am now 51 and was diagnosed with Fibromyalsia about 5 years ago. My symptoms are getting worse and I’m not responding to treatment. I have had other back and leg issues in my 30s and 40s, but they were diagnosed with herniated disks.
25. September 2010 at 6:51 am
Yes, Lyme can lie dormant for years. I probably had it for 25-40 years before my diagnosis. But not every health problem is caused by Lyme. The only way to find out is to be tested for Lyme and the co-infections that often come with it. See Lyme Resources for info on testing.
20. April 2011 at 3:15 pm
Hi Pam, I feel odd replying to this message from Sept. but since my husband tested positive for Lyme, it has made me question my own health. You say Lyme can lay dormant for years, which brings back a memory i had as a child being bitten by something that caused a large swollen rash, high fever, and severe leg pain. It was ignored and i did get better but over the last 15 years i have had high cholesterol, i have been diagnosed with arthrities (at 40?), i have palpitations, joint pain that comes and goes, dizziness that is undiagnosed, sinus infections. At the age of 51 i can’t turn a cap off a medicine bottle. I am a small person, i exercise and stay mostly on a low carb diet. When i eat high-carb foods i feel miserable and tired. It is my understanding that low carb helps minimize symptoms and suffering. Is it possible that i too have lyme? Just curious.
20. April 2011 at 3:36 pm
I don’t know how long I had Lyme before I was diagnosed. I’m in my 60′s, also a small person, exercise, eat well. I was bitten by ticks as a child in the Philly area. Got stiffness in my hands (that I still have) after the birth of my first son in my late 20′s. Lost the use of my left-hand suddenly in my late 30′s, about 6 years after a blood transfusion (could it have been contaminated with Lyme?). Had brain fog and difficulty finding words most of my life. Also sinusitis, which still hasn’t gone away. Like you, I’ve had little (and not-so-little) health issues here and there through the years. No one connected the dots until 5 years ago. Bingo! Lyme and a bunch of other infections (although luckily none of the usual tick-borne ones that come with Lyme).
One way to find out, Toni. Get tested. The jury is still out on whether Lyme can be sexually transmitted, although it can be passed to a baby in utero. Oh, and a low-carb diet makes sense for anyone. I hadn’t heard that it minimizes symptoms and suffering. I do know it minimizes fat!
13. September 2010 at 12:40 pm
I am 73 years old. Have had chronic bronchitis and breathing problems for several years. When profuse sweating and dark pink palms with red spots developed, I went to my Dr. He said I have all the symptoms of Lyme. Started antibiotics with improvement, then ran out for a week, was given a 15 day dosage, then a 14 day which I am still on. I have an apt with an Ll physician but could not get in until Dec. 8. I am almost afraid of stopping antibiotics when script expires. Should I continue to ask for Doxy during the time I wait.
13. September 2010 at 8:26 pm
Naoma – You didn’t say whether your doctor tested you for Lyme or made the Lyme diagnosis on symptoms alone. Nor did you say what “all the symptoms of Lyme” are if you have others besides those you listed. If it were me, I’d explain my concerns about staying on antibiotics to my current doctor to figure out what to do. I might also call the new doctor to be put on a waiting list for a cancellation so I might be able to see him/her sooner.
9. September 2010 at 12:59 pm
I have many of the symptoms listed for Lyme, however cannot recall any tick bites. I have been told that I had “spider bites” as a result of bullseye shaped marks and cellulitis. I am constantly tired and have pain in my joints…my doctor says its stress and age (I’m 40). I hunt, ride quads, and just enjoy the outdoors when I’m not to tired to actually get out! Could this be Lyme? I recall at least 3 instances of bullseye shaped markings-twice on my arms and once on the leg. Is it possible this could be from spider bites? I’m tired of being dismissed by my doctor as just being overworked and such…what do you suggest I do?
Thanks!
9. September 2010 at 2:33 pm
I haven’t heard of any spider bites that produce bull’s eye rashes. There may be some. The only way to find out if you have Lyme is to be tested by a doctor who knows about Lyme. You may be barking up the wrong tree with your own doctor. See this site’s Lyme Resources section for info on finding a Lyme-literate doctor and reliable tests. Being continually tired with painful joints is not simply stress and aging (you aren’t that old!).
8. September 2010 at 5:23 pm
I am a 38 year old Real Estate Broker and I feel 80. I found a tick in my head after listing several homes on very wooded lots and in areas heavy with deer. Around the same time I went through very emotional & stressful situations. I started having what was diagnosed as Severe Panic Attacks. Next came severe neck/jaw/ear pain, had MRI, meds, physical therapy which offered temporary help but have had especially neck problems for almost a year now non-stop. In November 09, I ended up in the ER with a 220 heart rate and was diagnosed with Ventricular Tachyardia. I’m on a beta blocker. I have had hip pain that come and goes sometimes so bad I can barely walk. The last week my left knee is so bad I can’t go up and down stairs. I have tingling in my face, feet and hands. I take ambien every night and still have trouble sleeping. I never thought about Lyme Disease but kept seeing it come up when I googled joint pain. I can’t go to the doctor until October 1st because of health insurance. Could I have Lyme Disease?
8. September 2010 at 6:42 pm
Yes. Get tested. The most reliable tests are IGeneX and MDL. Order the test kits for free and take them to your doctor for a blood draw.
9. September 2010 at 7:07 am
Thank you! Where do I order them?
9. September 2010 at 9:39 am
Testing company info is in Lyme Resources – http://www.lymediseaseblog.com/resources/
5. September 2010 at 7:22 pm
I live in Springfield, Va. in an area where there is plenty of wooded area, tall grass and weeds.
I pulled two ticks off of me a couple of months ago that had small white dots on them. Are these the typical ticks that carry Lyme?
I get an “Ice Cold” feeling completely around my waist and down my legs to my ankles almost every time I stand up or try to walk. My legs get very weak and I have to sit down quickly before I fall down. I have regular headaches that last the entire day. I see flashing lights around both of my eyeballs that have the appearance of a “Kaleidoscope” I also have head fog and have trouble remembering and concentrating.
I am 57 years old, have had a double by-pass heart surgery, two cervical (neck area) surgeries and have three buldging discs in my lower back. I realize that my lower back problems could be causing the “Ice cold” feelings in my waist and legs but I was wondering if anyone here has these problems and if so, what have they done about it, if anything.
I am the primary caretaker of a family member who is paralyzed from the neck down. I have to be here 24/7 and cannot work. I have no income or insurance. Are there any clinics in the Washington, DC area that will test/treat someone like myself for Lyme?
Thank you for your input
6. September 2010 at 7:34 am
Tim – If you pulled the two ticks off you before you were bitten, you probably don’t have Lyme. If you were bitten by infected ticks, it’s hard to say whether your symptoms could be attributable to Lyme or to your previous health issues. I’d recommend joining the Virgina Yahoo Lyme Group and asking for names of DC area docs who could test/treat you if you do have Lyme. Group membership is free. Members with info will be glad to private message you; names of Lyme doctors can’t be given directly in any online Lyme forums. Here’s the link: http://health.dir.groups.yahoo.com/group/VirginiaLyme/?v=1&t=directory&ch=web&pub=groups&sec=dir&slk=23.
Good luck!
3. September 2010 at 8:21 am
Has there been any cases of Lyme in Colorado? My Dr. says we don’t have the tick that carries Lyme in Col.and since I haven’y been to the North east in many yrs. that i don’t have it. My test came back neg. for lymes.
4. September 2010 at 8:10 am
Two possibilities, Patsty. You got Lyme years ago in the NE. Your Dr. used an unreliable test. Was it Igenex or MDS or the usual ELISA?
6. September 2010 at 1:03 pm
I moved from Ohio to Colorado in 2006. The only time I remember being bitten by a tick was 40 yrs ago. I used to go to maine but haven’t been there in 25 yrs. I have had flare ups of whatever is in my body 5 times since Sept. 2007. Can lyme cause extremely high fevers and pleural effusion? My blood work also goes crazy. Mis diagnosed with RA.
6. September 2010 at 2:09 pm
I’m not a physician so I couldn’t say. It seems from my own experience and that of others I know with Lyme that it it’s been around for a long time, it can affect most body systems. It can also stir up other infections you have. Only a Lyme-literate physician can figure out these things, especially if he/she has an infectious disease background. It’s not easy.
27. August 2010 at 8:43 pm
So I was diagnosed with fibromyalgia about 6 months ago but never felt that was an accurate diagnosis. I have joint pain, headaches, sinus problems, left sided pain/numbness/tingling, neck pain back pain and fatigue along with head fog, among other things. Would most of you say this is what you experienced? I was tested for the quick blood test for Lymes but it came back negative. I have to go back to the Dr for a checkup on Sept 20th; just wondering if I should consider asking for further testing.
28. August 2010 at 8:25 am
Yes, your symptoms sound very familiar, Allison. If by quick test for Lyme you mean the CDC Elisa test, it’s very unreliable. I’d request you be retested with the IGeneX test. You can get the test sent to you for free from http://igenex.com. Click on What Test(s) to Order. Also order the companion test for co-infections (Babesia, Bartonella, & Ehrlichia). You never know how many other infections may be present with Lyme. Note that there are specific tests if you live in New York state. Get your doctor to order a blood draw and send the tests back to IGenex. It usually takes 3 weeks to get results. If you do have the IGeneX test, stop back here. Most doctors who don’t regularly treat Lyme don’t usually know how to interpret the results. Good luck!
12. August 2010 at 10:03 am
I have a very young friend (18) who has been having severe bowel problems for the last year and 1/2. They have seen many, many doctors, and now she is to the point where her colon is pretty well paralyzed. I saw on a site that this can result from Lyme disease. Has anyone had similar problems with Lyme?
12. August 2010 at 3:57 pm
Pam – Lyme can cause digestive problems, as can the co-infections that often come with it, Ehrlichia, Babesia, & Bartonella. The only way to determine if your friend has any of them is testing by a Lyme-literate physician. Your friend can get more information on Lyme and find a Lyme doctor by joining a local or state-wide Lyme group. Two good places to look – the Lyme group at MD Junction and Yahoo Groups. On the latter, search on [state name] Lyme.
25. July 2010 at 6:13 pm
I was diagnosed with Lyme about 5 or 6 years back. I was infected with it in New York State, but I live in Pennsylvania now. I took antibiotics for a month. I have double vision. When I asked the eye doctor why I had it, he said he didn’t know why. Now I know why! I also have sleeping and anger problems. Does anyone on her know of people infected with Lyme, losing their hair in patches? My hair has been coming out in a strange way. Not like hair normally comes out. At the time I was diagnosed I was having temporary bouts of numbness. The numbness moved to different locations. I haven’t had numbness since taking the antibiotics. I am having problems with my joints. My right elbow and shoulder is giving me some problems at the present. A few weeks back it was my knees that was causing problems. It bothered me to sit at my computer work station. My knees ached so bad I would have to get up and leave my computer. I have heard of a few people with Lyme reporting hair loss. Whats the story on this symptom? Does it look like Lyme can cause this?
25. July 2010 at 7:14 pm
Frank: I’ve had flashing lights in one eye. And numbness, mostly in one hand. I know lots of people with Lyme joint issues — now including me after 5 years of treatment. The pain does seem to travel like you describe. I’ve had an IgeneX test once or twice a year. Looking at my results, my LLMD says the Borrelia continues a cycle of going into cyst form (which lives mainly in joint ligaments and tendons), they coming back out into adult spirochetes in my blood. Your hair loss may be a thyroid issue, which Lyme can also affect. Have you had any thyroid tests?
26. July 2010 at 8:16 pm
Thanks for answering my questions Pamela. Yes just a few months back it was tested and it was normal. This hair loss goes back before that test. I know that I have read on the Internet that other people with Lyme disease have also had unusual hair loss. One woman reported her nine year old daughter that had Lyme Disease, had her hair coming out in patches.
27. July 2010 at 6:23 am
Hair loss could also be due to adrenal insufficiency and/or other hormonal imbalances. Always some system to look into further with Lyme.
16. July 2010 at 7:16 pm
Living in West Virginia, lyme disease is on the upswing here. I was diagnosed two weeks ago (thankfully) after finding a deer tick about 6 weeks earlier. My symptoms started with fever, pain in my jaw/teeth and within 24 hours my left side of my bottom lip, chin, teeth and jaw were numb. I had no bulls-eye rash. My initial doctor dismissed lyme as a possibility even though I explained the tick and time frame was right. I even asked for a lyme test, twice. This is a small town where lyme disease is rampant, I’m still astonished that he would not test me. Thankfully I found a new doctor that recognized the possibility. I still, after two and a half weeks on doxy have complete numbness, itching, tingling in my face, chin, lip (left side only) and random pains throughout my body, cloudy feeling in my head and discomfort in my jaws. I’ve had multiple tests including: MRI, xrays, blood work, etc. We’re hoping these symptoms are strictly related to lyme with no underlying conditions. So far, none of 3 doctors, 2 dentists or 1 oral surgeon have ever seen these symptoms…I’m hoping its all lyme related, it’s been caught early enough, and I’ll improve soon. If anyone has ever experienced these symptoms associated with lyme, please respond. Thanks
19. July 2010 at 4:43 pm
Yes, Betsy. They could all be Lyme symptoms. I’ve had tingling in my face, itching in my ears and a “crawling” itch across one shoulder. Also flashing in my eyes. The random pains throughout my body scared me at first, but now I know they’re Lyme (or possibly a co-infection). Most of us have had brain fog at one time or another. I also had trouble finding the right words (lack of verbal fluency). You’re on the right track. Keep trying to find a Lyme-literate doctor, even if you have to travel farther than you’d like. Don’t be hornswaggled by docs who know little or nothing about Lyme. (P.S. you should also be tested for Lyme co-infections Babesia, Bartonella, and Ehrlichia plus find out if you have herpes viruses and Chlamydia and Mycoplasma pneumonias. All make Lyme treatment much more complicated).
22. July 2010 at 10:02 am
Betsy, I have very similar symtoms to yours. Last March, I started having unexplained tooth pain (back left molar). 4 dentists couldn’t find anything wrong. All x-rays were unremarkable. This went on for 3 months. They did a root canal, which did not end the pain. My physician and 4 the dentists agreed that it must be TMJ as my jaw muscle was also swollen, stiff at times and shooting pain up into my left ear. One day, I discovered that my lower left lip, left chin, left bottom teeth/gums were numb. I had a CT scan with contrast, which only showed asymetrical enlarged jaw muscle. Blood test came back positive for Lymes. I’ve been on the Doxy for 2 1/2 weeks and Azithromycin for 7 days. I am still numb, but the pain has decreased significantly.
12. July 2010 at 9:44 pm
About 6 years ago, I had a tick attached to the back of my leg, and later experienced the bulls-eye rash. I never went to a doctor because it didn’t hurt and it eventually went away. Weeks later, I felt like I had the flu, which just wouldn’t go away. I finally went to my doctor, who ended up sending me to a group of doctors that specialize in arthritis. They eventually diagnosed me with Lupus and have been trying different medications for years. Nothing helps. Then I saw a TV program about ticks and lyme disease, where I put two and two together. So I called my doctors and asked if they could draw my blood and send it off for testing for Lyme. They REFUSED to do it! Even though I’ve had Bells’ Palsy, terrible insomnia, rapid heart beats, arthristis-like symptoms, etc. They told me they have done it for other patients before, so I don’t get it. I’m not going back. I have an appointment with Dr. L in Seattle, a five hour drive away, in two weeks.
13. July 2010 at 5:48 am
Sorry it’s taken you so long to find out what you have, Arlene. Sounds like a good move to find a lyme-literate doctor, even if it means a long drive. Sad to say, most doctors in the US know little or nothing about Lyme. Those who do test typically use ELISA, which returns a high number of false negatives. Make sure you get tested with the IgeneX test or one from MDL.
13. July 2010 at 4:26 pm
Thanks, Pamela. I’ll post an update after my test results.
17. June 2010 at 11:50 pm
I have so many of the symptoms listed here and they are getting worse. Extreme fatigue, joint (especially my feet and knees)and muscle pain, dizziness, trouble remembering and concentrating. I have a physical on 6-21 and am going to ask my doctor about late stage lyme. I’m afraid I already know what she’s going to say. Have you any idea where I can find a doctor somewhere in the area of north Iowa, southern Minnesota, eastern South Dakota? I’m getting desperate – NO ONE I know even comes close to understanding what’s going on. Thank you for any help you can give me.
18. June 2010 at 7:32 pm
Sorry for your ill health, Coralene. Check Yahoo Groups for online Lyme support groups in Minnesota, South Dakota and/or Iowa. Another great online Lyme support group is at http://www.mdjunction.com/lyme-disease. Any of these places will have people with Lyme who understand what you’re going through. Best of luck!
19. June 2010 at 10:50 pm
I am 41 yrs old and have RA, for 3 years now, and have been dealing with those problems… but recently I noticed a round, red mark on my upper hip that did not go away. After 10 days, I went to the DR to get it checked. She put my on doxycycline, but I had an allergic reaction and ended up in the ER.
The ER doctor gave me Erythomyicine (sp?) 500mg/twice/day for 10 days and just found out, on Fri, June 18th through blood work, that I have a 1.62 ELISA and one positive IgM (I think). I had the Lyme test 1 year after diagnosed with RA, but all was negative.
I need to talk with my dr on Mon., but they will probably put me on longer dose of antibiotic, but then I will not be able to take my RA meds, Cimzia.
Any suggestions or input on what I can do??? Desperate in PA!!! Thanks
20. June 2010 at 8:19 am
Unfortunately what you’re experiencing, Lori, is what many people with Lyme go through. Unreliable tests, tests that regular doctors don’t know how to interpret, and drug reactions (which might have been a Herxheimer die-off of the Lyme instead – something you want). You should find a Lyme-literate doctor in your area. Lyme arthritis is one of the common symptoms; many Lyme patients with it manage to take both RA and Lyme meds. You should also be tested for Lyme coinfections. Many of us have one or more other infections besides the Lyme borrelia. Your best bet – join two online forums and ask for a recommendation for a Lyme doctor near you. People will have to private message you since no forums allow mentioning doctors’ names to save the doctors from persecution by their state medical boards. For a good Yahoo group, Google PennsylvaniaLyme (no space). Also join http://www.mdjunction.com/lyme-disease. Wonderfully helpful members! Best luck!
6. June 2010 at 7:20 pm
I was diagnosed with Lyme’s after 30 years of the same grievous symptoms. In process and thankful for the many that are helping me towards a better quality of life. My question is that recently I read online about one of the symptoms of Lyme’s being a metallic taste. I had asked two health care practitioners about the strong metalic taste I had and one didn’t consider it anything, the other said it was a lack of zinc since it was more predominantly on my right side. Does anyone remember reading about this and what causes it? Bonnie
6. June 2010 at 7:47 pm
Are you on any antibiotics yet? Some for Lyme can cause a metallic taste. If not, Lyme does cause strange symptoms all over the body. It deregulates hormones so all your senses can be affected – taste, touch, smell, vision, hearing.
30. November 2010 at 8:22 pm
Bonnie,
I don’t know if you received an answer about your metallic taste as of yet, but I had the same symptom periodically, along with Lyme and co-infections for possibly 20+ years. When my LLMD doctor checked my heavy metals, my lead level was 3x the top amount anyone should have in their system. Basically, I have toxic levels of lead, which gives a metallic taste, and now taking DMSA to eliminate. Have your metals checked through a urine sample. Good luck and God bless.
10. May 2010 at 6:26 am
Glad you found this post helpful, Etha. Also glad you like the site’s layout. I think visitors to a web site deserve a quality experience, especially to a Lyme site since there’s so much conflicting, confusing information on the Web about Lyme.
24. April 2010 at 1:54 pm
I was diagnosed with lyme disease two falls ago. I wasn’t formally diagnosed though. I was sick with severe flu like symptoms and a week after I found the bullseye. I went to the doctors and he never tested me just put me on antibiotics for a month straight. I dont know which antibiotics I was on. and the doctor said that the test took over a month to get the results back and were usually not very correct. anyway I felt better after taking the pills and went on with my life. It is now almost two years later and could it be flaring up now. its seems as time goes on my joints especially my knees and hips are more sore than ever to the point where I limp when I walk. and I feel like im always in a drunken haze with my memory like I really have to think about the previous day to remember what happened and I have a hard time remembering details. I am only 25 but I fell like im 60. I am regulary active hiking, and walking my dog and I work on my feet all day hustling around at work. I constantly feel tired no matter how I sleep and within the past two months my sleeping has gone down hill. Could lyme have been hiding and now showing its face.
24. April 2010 at 3:05 pm
At 25 you shouldn’t have constant knee and hip pain, muddled memory, tiredness, and poor sleep. Yes, Lyme could have been building back up in your body if you didn’t get rid of it. Plus you could have one or more co-infections that commonly come with Lyme. Also if you do have Lyme, too much exercise and getting overheated can make it worse.
Find a Lyme-literate doctor who will test you with either of these tests. You can call for a free Western Blot test kit. Make sure to test for Bartonella, Babesia, and Ehrlichia too:
IGeneX, Inc.
797 San Antonio Rd.
Palo Alto, CA 94303
Tel. (800) 832-3200
http://www.igenex.com/
If you live in NY State, you’ll need to take special tests. Ask about which they are.
MDL Medical Diagnostic Laboratories
East Gate Business Center
133 Gaither Drive, Suite C
MT. Laurel, NJ
(877) 269-0090
http://www.mdlab.com/
Best wishes!
10. April 2010 at 11:12 am
I just got diagnosed with Lyme disease through a blood test. I live in CT. We had a cold winter with snow. I seemed to be alright at Christmas but went to Los Angeles to visit my daughter for a month. The first night there everything seemed to be fine. I woke up in the morning with terrible pain in my feet and a cramp in the calf of my leg. When I got back to CT blood test said I had lyme’s. Can Lyme’s come on that suddenly? It seems the pain is all in my feet. I am on amoxicillan l50mg 3 times a day for 3 months. My daughter says there is are no ticks in los angeles that would cause lyme’s. Are there? Thank you for a reply.
10. April 2010 at 12:28 pm
You may have had Lyme for some time and not had any obvious symptoms. However, when it reaches a threshold, you can get slammed quickly. I lost the use of my left hand in 1983 that way. One day it was fine. The next, my fingers and wrist dropped and I had shooting nerve pains down my arm.
People with Bartonella, a Lyme co-infection, often get pain in their feet. Were you tested for the 3 typical Lyme co-infections: Bartonella, Babesia, and Ehrlichia? If not, you might want to ask your doctor to test for them.
To answer your daughter, there are ticks everywhere, although they’re more prevalent in the US Northeast, Midwest, and Northwest. And of course CT was the epicenter for Lyme back in the 1970′s.
Also, Lyme is probably sexually transmitted, so you could “get” it in any location from a sexual partner or even possibly from a blood transfusion. (There’s mixed opinions on that). And it seems that other biting insects besides ticks (fleas, mosquitoes, flies) can carry Lyme.
See how you do on the amoxicillin. Doxycyline is another antibiotic of choice. Most people with chronic Lyme find they need to take them much longer than 3 months.
25. March 2010 at 10:29 pm
I got bad sick when I was 17 years old. I ran a high fever every night for two months. Every night at 9pm to 1am my temp was around 106 degrees. I went to doctor after doctor. They could find nothing wrong in my blood work. At the time I was a horseback rider that frequently went riding in the north georgia mountains. after two months the fever went away. the Dr’s said what ever it was my body must of fought it off. They never did diagnose me with anything. My twenties were a nightmare and my thirties are not looking much better. The fatigue and pain I feel in my legs and fingers is probably the worst. My blood pressure is 90/60 and my heart rate has never been under 100. It usually averages around 115. I do not know if it is lyme or maybe I really am crazy. I have recently enrolled back into college hoping if it was just depression and lack of exercise I would get better. I have been diagnosed with Raynauds Syndrome and femoral neuropathy. My blood work of course is normal. They have tested my thyroid since I have all the symptoms for hyperthyroid and tested all my hormone levels. The only thing that seemed a little low was my Vitamin D levels. I can not find any Doctors in Georgia to test my for Lyme. Their answer to me is Lyme disease is not in Georgia. I have pulled several ticks off my head in my lifetime on average atleast 5 ticks per year. If it was Lyme when I was 17 i don’t think the doctors would of even been able to see a rash considering I have very thick hair plus I don’t remember pulling any ticks off at the time but at the end of summer I know I had at some point during that summer. Why won’t they test me. And if anybody Knows of a LLMD in the north georgia or Chattanooga Tn area please post it. I seem to be getting worse I can no longer feel my toes on my right foot and they are Purple now. I do not want to live my thirties like i did my twenties.
28. April 2010 at 1:59 am
My story is somewhat similar. I just found out confirmation on disease today. I live in Gainesville, GA. Finally found good Dr.’s at Progressive Medical Center in Atlanta. Let me know if I can be of any help. Starting alternative treatment next week.
3. May 2010 at 8:32 am
have you had any luck? I live in North GA and was diagnosed with Lyme in Jan 2010 after 3 years of severe illness. No doctors seem to be able to help me. I have been to the Mayo Clinic and to Northside Hospital in Cumming GA and still I seem to be getting worse each day. I am 30 years old and have 2 small children. I would love to hear how you are and if you found a doctor nearby to help
31. May 2010 at 8:48 am
I was sick for 7 years before testing positive for lyme on the Western Blot and CD-57 tests as well as others. I had been tested on the Elissa test three years earlier but it came back negative and it was never purused by my then doctor. I now know that test has many false negatives. One of the things my new MD/Naturalpathic doc has me doing besides the antibiotic Doxy is taking Cat’s Claw- it is an herb and you start with one 500 mg three times a day for a week, then 2 pills three times a day for a week, then 3 pills three times a day for a week and then 4 pills three times a day for a week. Finally the top dose is 4 pills four times a day. I have been on this for 6 weeks and feel somewhat better. No presciption needed. Worth a try. The only side effect is sometimes loose stools or nausea.
31. May 2010 at 1:42 pm
Thanks for sharing, Brenda. Glad you finally got the appropriate Lyme test and are being treated. I too tried Cat’s Claw (two brand names are Samento and Saventaro). I didn’t feel like myself on Saventaro – made me moody – so had to discontinue it. For anyone wanting to try Cat’s Claw, I’d recommend consulting your LLMD first. Natural drugs aren’t necessarily safe and can have adverse interactions with other drugs you may be taking.
26. March 2011 at 11:37 am
Angie,
My doctor in MD is great.
I have had all type of health issues.
He states that when your immune system is so compromised…your immune system can not always mount a response to produce antibodies to show that they are there because of co-infections. So it is like the immune system says oh…they are there….but can not do anything else.
His treatment protocol first addresses nutritional deficits because usually persons like us have nutritional deficits because of the toxins. So…he tests and treats amino acids deficits first and gets nutrition better and then….you can begin to address the infection….My doctor uses a natural approach which is a little less harsh. i can not imagine if I had done antibiotics.
9. January 2011 at 1:17 pm
Contact me privately re: LLMD in Georgia kg819@aol.com
23. February 2009 at 7:22 am
Penny, it’s not only Drs. in the pacific Northwest who deny the existence or seriousness of Lyme. It’s Drs. all over the US. Like you say, even many of those who do treat Lyme don’t treat it long enough.
Why is this? Call it the politics of Lyme. It seems to be some combination of lack of knowledge by individual Drs.; lack of acknowledgment by the American Medical Association, its specific specialty organizations, the Centers for Disease Control, the National Institutes for Health, and the medical insurance industry; and major resistance from pharmaceutical companies who’d rather sell more expensive drugs for the diseases Lyme gets mistaken for.
Sad picture. Glad you and I and others like us persisted in getting the right diagnosis and treatment. Best wishes on your continued recovery.
23. February 2009 at 3:14 am
What you describe as chronic lyme clearly describes my life of 20 years with the disease. I was written off as a head case for 3 1/2 years, only being given antidepressants. Finally, I was diagnosed with lyme and treated with 30 days of Docycicline. I thought it was history. Over the coarse of the next 17 years other symptoms developed until I was severely handicapped. It was a fellow employee who ID’d it as chronic lyme when the Drs. all thought it was connective tissue disease. I finally found a Dr. who treated chronic lyme. I have been on Doxy for almost a year now. Within one week on the antibiotic I was having improvement.Why are there so many Drs. in the Pacific Northwest who are so bent on denying the disease’s existance and full coarse of treatment?!
24. June 2010 at 7:42 pm
They are thinking of themselves
Because the do not want to get sued.
Their ego.
What’s for dinner?
4. September 2010 at 7:27 pm
Hi Penny,
I was wondering if you well now? I feel so bad you had to go through that.
I think I have had lyme disease for over 20 years. My Dad was a deer hunter. There was always ticks around us during deer hunting seasons.
When I was 20 I had bulls eye rashes on my lower leg. I had that at least 4 different times. I never knew about lyme disease until recently. I have been diagnosed with arthritis, fibromyalgia, migraines several times a week, anxiety, I have muscle and joint, jaw, stiff neck pains so bad. The list goes on and on.
I ache and feel sick just about every day of my life.
I was wondering if the Lyme disease test will show positive after all these years? Did you have a blood test to diagnose it? I just want to know what to ask my Doctor for. I’m going this week. I really need help and would appreciate any advice.
Thank you so much, I really hope you are all better now.
Sincerely,
Darlene
6. September 2010 at 9:16 am
Darlene – Yes, Lyme can be tested if you’ve had it for many years. Here’s info on reliable tests to ask your doctor for. Also make sure to test for the common Lyme coinfections Bartonella, Babesia, and Ehrlichia too:
IGeneX, Inc.
797 San Antonio Rd.
Palo Alto, CA 94303
Tel. (800) 832-3200
http://www.igenex.com/
If you live in NY State, you’ll need to take special tests. Ask about which they are.
MDL Medical Diagnostic Laboratories
East Gate Business Center
133 Gaither Drive, Suite C
MT. Laurel, NJ
(877) 269-0090
http://www.mdlab.com/
23. September 2010 at 1:12 am
Hi,
Thank you so much for the information.
I had my blood test done today. I don’t know which one my Doctor had me get but I’ll find out.
Thanks so very much for your help. I really appreciate it.
23. September 2010 at 6:01 am
Keep us posted, Darlene. Hope you get some answers soon to explain your long-term symptoms.