Patient Comments: Lyme Disease - Treatments

How was your Lyme disease treated?

Comment from: kittykat, Published: March 16

In 1972, I lost my mother to a rare illness. Little did I know that it was Lyme disease. I was 7 years old at the time and I remember my mother being in and out of the hospital on various occasions. She was bitten sometime in the summer and I lost her a few months later. I remember seeing her legs were covered with what resembled measles. There were these little red spots all over her legs. She needed to use a walker because her legs were not functioning well enough. My grandmother said that my mom died of a rare disease. I wish there were evidence of any research back in 1972, and had there been, my mom would still be here today. I am now 46 and my mother has been gone 38 years. I hope that with today's medical advancements, no other child will have to go through the sorrow of losing a parent.

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Comment from: Denby1957, 55-64 Female (Patient) Published: July 24

I was treated with Ceftin after getting a Lyme titer test. I had flu like symptoms, miraines, stiff neck (in which I could not lift my head) no rash, chronic fatigue, and generalized pain in my joints. It took over 6 weeks to start feeling better. That was over 18 years ago and I have arthritis and pain in my eyes from the effects of lyme disease.

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Comment from: sad-sister, 45-54 Male (Caregiver) Published: May 30

My brother has frontal temporal dementia from Lymes that went undiagnosed for over 15 years. In NJ, the test is not accurate. He had 6 blood tests and 2 spinal taps. All were negative for Lymes. I knew he had it, so we sent his blood to IGENEX labs in California via a Lymes literate specialist in NJ, and got the Lymes diagnosis finally. But it was too late. Now, he is institutionalized from frontal temporal Lymes dementia.

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

I know I had been exposed to ticks this spring (2012) since I have picked them off of me. However, I never had red spots or really irritated skin. I am not sure how long it had been since I was bitten by a tick. My symptoms came on suddenly like the flu with fever, chills severe headache and back pain like I was in labor. I really got sick on a Sunday and went to my doctor on Tuesday. He put me on Doxycycline Hyclate 100 mg and today, Wednesday, my back pain is gone, headache is almost gone, fever is still breaking. I am thankful I should make a full recovery.

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Comment from: jls, 45-54 Female (Patient) Published: December 08

I have been sick for 10 years and have been tested over and over again I've thought for a long time its lyme. When I first got sick I had rash small one on my lower leg then depression and really bad flu and couldn't move my arms without intense pain this was 2001 my doctors conclusion fibromyalgia. since it has been downhill it is now 2011 and i got a terrible rash like bulls eye on arm joint then on the left side of my face and i have had numbness up and down my body and joint pain 24/7 along with all kinds of weird other things. Can't find a doctor who will listen and take time to care. Help me please.

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Comment from: cher, 55-64 Female (Patient) Published: July 20

In June I found a tick on my lower abdomen. It was the size of a poppy seed. Immediately the target site grew and itched terribly. Three weeks later I had lower back pain or kidney pain. My skin hurt on my thigh and back. Now I'm on doxycycline. I've been on it for 6 days and am improving daily. I still get what I call Lyme Attacks. Legs turn to water and I ache all over.

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Comment from: Still herxing, 55-64 Male (Patient) Published: June 21

Treated my Lyme disease with Minocycline and Cefdinir for 3 months then placed on Ceftriaxone 2 grams twice each day (IV infusion). Try to be encouraged...It is a long battle and treatment almost always makes your symptoms worse. Please be aware that Lyme may affect your other family members. If they have unusual symptoms have them treated for 4 days with antibiotics to see if they get sicker. My doctor has confirmed Lyme in my wife and in my son; my dog just died from Lyme.

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