Patient Comments: Lyme Disease - Share Your Experience

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

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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Comment from: Jojo, 45-54 Female (Patient) Published: August 05

When I was approximately 42 year old I started going to the doctor with headaches, joint pain in my hands, and facial twitches. They started telling me it was stress, then I needed to relax more, then they tested me for RA and MS and back to stress and this went on for eight years. In 2010 I moved to northeaster Iowa to be closer to family and went to a new group of doctors for the same thing and they started with same tests and added one new one, Lyme disease. It was positive. New problem no one knows how long I've had it because it didn't present with a bullsey that was noticeable. By the symptoms we figure that I am in stage 2. (This after researching and finding that there are 3 stages 1. acts like arthritis 2. like MS and Fibromyalgia 3. Dementia. Every day is different in the pain department some days I can't get out of bed at all and other days I use a walker or cane and other days I'm ok. I just thank god now for all the good days that I have with my daughter and my family.

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Comment from: Yia-Yia, 65-74 Female (Patient) Published: June 17

I suspect that I contracted Lyme disease from a lone star tick. I have a bite from a lone star that is now the size of an orange and I have had severe symptoms of Lyme this week. My doctor put me on a three-week course of doxycycline.

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Comment from: Anna, 45-54 Female (Patient) Published: June 10

First noticed pain in my heel when getting out of bed in the morning. Next started having joints "pop". Next felt tired, then exhausted, then could not get myself out of the chair. Thought I must have the flu. Smart Doc in Connecticut said no one has the flu in July. Started heavy antibiotics. Missed over a month of work...thought I was going to die. NEVER found a tick or "bulls eye" so be persistant with Doc if you suspect Lyme Diease. You will recover, but takes a while.

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Comment from: Good citizen, 45-54 Male (Caregiver) Published: March 29

I just read a story in the newspaper about a girl who was afflicted with Lyme disease. She experienced numbness in her feet and couldn't walk. She also had memory loss and other cognitive dysfunction (brain fog). This patient spent months seeing different doctors, with the possibility of permanent disabilities. Her story is a warning for all of us to look for signs of Lyme disease. If we find it early enough, it is very easy to treat.

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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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