Patient Comments: Lyme Disease - Diagnosis

How was your case of lyme disease diagnosed?

Comment from: nickbarkley, 45-54 Female (Patient) Published: March 04

I became violently ill, very high heartbeat, they found mitral valve prolapse. My tongue turned colors as did my fingernails. I could not keep food down, poured sweat day and night lost weight would have died. I got treatment for Lyme disease because I had bull's eye on the left side and red rings all over top of right thigh; 16 years later I am disabled in spite of 9 years treatment.

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Comment from: abc, 25-34 Female (Patient) Published: October 24

I was disoriented, and ended up in the emergency room. After a quick complete blood count test and urine analysis, they transferred me to a psychiatric unit. I was discharged after a few days, but shortly after began falling, vomiting, etc. I saw a doctor to get answers who tested for Lyme disease and several others. For some reason the elevated Lyme antibodies results were overlooked. I went to the infectious disease section for answers, and they suggested based on my symptoms, that I had encephalitis. He asked for a copy of all laboratory reports, but only saw the negative western blot, and not the antibodies. I continued having muscle weakness and headaches, which progressed to dizziness, poor memory and generalized weakness. I needed answers and went to a holistic doctor who said I have Lyme disease. I looked back at old laboratory reports and noted the elevated Lyme antibodies from 7 months before and faxed them back to both doctors who repeated the tests and I finally got a diagnosis!

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Comment from: Chronic tired, 55-64 Female (Patient) Published: April 17

On November 18 2013 I was bitten by a tick. I removed the tick with my finger by mistake. I went to the general physician for antibiotic for tick bite. Finished antibiotic prescription within 72 hours. I had been perfectly healthy before the tick bite. I have flu like symptoms, digestive issues, chest pain, and joint pain. Specialists have taken MRI and CAT scan; all clear and healthy. I was tested for Lyme disease. The Canadian test came back negative on Western. I wonder if you can have negative test and still have Lyme disease.

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Comment from: Swingo, 55-64 Female (Patient) Published: March 31

I was unaware of the round "target" rash on my back. I never found a tick on me. Over a year went by before I finally saw a dermatologist for the "unusual" rash. He thought it was ringworm, took a skin sample to test. He called me the next day to tell me I had Lyme disease and sent me to a rheumatologist. This doctor didn"t believe in Lyme disease and told me I have joint pain due to my Crohn"s disease, an auto-immune system disorder. However, I had no previous joint pain (30+ years of Crohn"s) and developed severe spondylitic arthritis within and during the year I was undiagnosed with Lyme"s. I now have constant joint pain in my large joints, and I suffer from massive headaches 12 to 25 days a month. I use analgesics as rarely as possible and I never use narcotic pain relievers. It"s tough.

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Comment from: Certl, 35-44 Female (Patient) Published: February 28

I was diagnosed with Lyme's 7 years ago, I have had 2 flare ups of it in the last 3 years. I was then diagnosed as anemic just this winter, plus I'm having terrible skin lesions, no doctors are connecting dots to Lyme's because blood is not showing elevated levels. I am taking iron as of now and to continue till April.

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Comment from: tim, 35-44 Male (Patient) Published: November 07

I just got a call from my sleep therapy doctor telling me I've tested positive for Lyme disease. For the past two years I've been told I might have congestive heart failure but sometimes they see it and sometimes they don't. Out of nowhere without warning my blood pressure shot through the roof and my body was so full of fluid that I could not breathe. I have been wheezing and coughing and my knees don't work sometimes. I have been uncharacteristically nervous and worrisome, I have been jumpy and keep thinking I'm seeing things out the corner of my eyes. I used to have a mind like a steel trap and now I can't remember things I've said or done or want to do. I feel like I'm going crazy or losing my mind. I have a CPAP (continuous positive airway pressure) machine which helps a lot but I know something is just not right and this is what I keep telling my primary care physician. So now I think this is it.

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