Patient Comments: Lyme Disease - Share Your Experience

Did you or someone you know have Lyme disease? Please share your experience.

Comment from: Nightingale, 55-64 Female (Patient) Published: May 23

In late May of 1973, I noticed a bull's eye like mark on the inside of my knee. At the age of 22 I didn't give it much thought. Within a day or two I started feeling ill as if I had a cold. Soon after I had a fever of 104 and went to bed. I was exhausted and began sweating profusely. When I awoke the next morning my chest was covered with red blotches. After one week, when I felt good enough I went to see a doctor. He had no idea what was wrong with me accept to say that maybe I had scarlatina. There was no treatment so I went on about my life and never gave it another thought. Over the past forty-two years I have been telling doctors about this incident every time when I've been seen for aches, pains, tiredness, migraines, eye pain, and too many ongoing problems. Back in the 80s when Lyme disease was in the news, the doctors still never thought to test, let alone treat me for it. I finally asked a doctor if she would please test me and her response was a laugh. My eyesight continued to worsen and my pain is so debilitating at times I don't get out of bed. Thank goodness, I get lung or sinus infections often enough that when I'm on antibiotics the pains go away. I still have no idea where to go to be tested, but at 63 it probably doesn't matter.

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Comment from: Jeff, 55-64 Male (Patient) Published: May 09

I was working as an IT (information technology) Director and one morning I woke up with one eye swollen almost shut. I went to the emergency room because I wasn"t able to get an appointment with my doctor right away. The emergency room (ER) doctor sent me home with some antibiotic eye drops. This was after I told him that the side of my head was very sore and it hurt to just run my fingers through my hair on that side. Later that night I just thought that something else was wrong because I felt bad. I had fatigue and noticed that I had lost over 20 lb. in the past couple of months. So I googled, "one eye swollen shut", and at the top of the returned list was, "check for tick bites". So I examined the side of my head under the hair and sure enough, I had a black tick about the size of a pencil eraser. I had the tick removed with tweezers and cleaned. They noticed a red bull's eye rash on the back of my head and several bite marks on the side of my head. This thing was on there for quite a while. You can"t feel it because the tick's feet have a chemical that deadens the area. They gave me azithromycin, or a Z-Pak. After the Z-Pak I went back to the doctor because I still felt bad with fatigue and eye pressure like a full time eye headache. They gave me another Z-Pak and after that was gone I felt a bit better, but then got worse after a week or so. My doctor said, "I don"t think you have Lyme disease, but you can go to the ER if you still feel that bad." So I went back to the ER and they admitted me to the hospital and I was diagnosed with Lyme by an infectious disease doctor. She put me on an IV of ceftriaxone and let me go home with a PICC line about a week later. I took the IV ceftriaxone for 6 months. At first it was very hard to function. I had night sweats, headaches, fatigue, and joint pain. After the round of IV treatment she put me on 500 mg azithromycin and doxycycline daily. About 10 months later my doctor suggested that I quit working because the stress and daily activity were making things worse. Now it has been about 3 years and I am still taking 2 antibiotics daily. I have some good days and many bad days. I live with joint pain that seems to move around to various places. I am on disability and had to retire early with chronic Lyme. From the things I have read about other patients, I guess I am lucky that it was diagnosed fairly early and that I got the IV antibiotics for 6 months. I have also been drinking a small amount of silver water each day that seems to help a bit. I understand that silver water used to be a main antibiotic before penicillin. I bought a silver water generator kit for $350 and make it myself out of distilled water. It can be found online. Best wishes to others that have this nasty disease. I lost my high paying corporate job and live with pain every day from it.

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Comment from: Jenna, 13-18 Male (Caregiver) Published: November 06

Two years ago my husband, then 39, started getting severe headaches, then fatigue and eventually tremors and severe body pains. Eventually we found a doctor that treated him with doxycycline for 3 months. He got somewhat better but not 100%. Two months later my 15 year old started raging and having severe headaches, light sensitivity and body pain. It took 4 months and several doctors to finally get him treatment. He's been getting treatment for 5 months and can still not go to school full time. Recently, my husband started treatment with a new doctor and appears to be having a nervous breakdown.

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Comment from: 35-44 Male (Patient) Published: March 28

In July 2013 I had a fever for 3 weeks along with a headache daily before I decided to go to the doctor. They thought it was my liver, they tested for everything. y the time they found that it was Lyme disease, it was too late after the antibiotics, I now haft to take pills for the rest of my life. I want to just cut my legs off above my knees just to get away from the pain in my knees. My pills have stopped working again, I don't know where I go from here.

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Comment from: Neverendingpain, 55-64 Female (Patient) Published: August 23

If given the option to trade my chronic Lyme disease for almost any form of cancer, I'd take the cancer without hesitation.

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Patient Comments

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Lyme Disease - Diagnosis Question: How was your case of lyme disease diagnosed?
Lyme Disease - Treatments Question: How was your Lyme disease treated?
Lyme Disease - Symptoms Question: What were the symptoms you experienced with Lyme disease? Did you think it was something else?

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