Patient Comments: Lyme Disease - Share Your Experience

Question:

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

Comment from: LymesNJ, 55-64 Female (Patient) Published: January 03

If your doctor does basic lab tests for Lyme disease and you only have say 4 positive bands out of 10 and they say, you need 5 or more to be positive, that is not true. I went to a specialist and he drew my blood (13 tubes) and sent them to a lab for more sensitive testing and sure enough I was positive. I have been infected twice and now suffer from chronic Lyme. However there are months I feel fantastic. Then almost seasonally I get the fatigue, cloudy head, headaches, swooning, and weakness in limbs, but I keep on pressing. Currently I have a dull pressing headache, mild weakness, and some equilibrium problems so I put myself on doxycycline (I'm a nurse, hubby a doctor). I recently went to a new doctor, who said my lab tests were inconclusive, wanted me to have a cognitive test, ugh, and he was an infectious disease doctor! I am starting to feel better with the antibiotics, it will pass I'm sure, but I know it will return in 2 months or so, then again I will feel like life is being sucked out of me. I am still looking for someone who will treat me to prevent these episodes.

Comment from: Peter J, 55-64 Male (Patient) Published: July 29

My case of Lyme disease was not diagnosed for 5 weeks. I saw three different doctors before being sent to hospital where it took another 5 days to diagnose. I had Bell's palsy, was unsteady on my feet, had loss of feeling around my nose and mouth and got extreme fatigue. After four years my only remaining symptoms are slight numbness and the fatigue. The nerve endings have taken a long time to recover.

Comment from: klrva, 55-64 Female (Patient) Published: May 21

I found a tick on the back of my leg about 2 weeks ago and thought nothing of it. It was red in the area but there was no bull's eye rash. Four days later I had severe viral symptoms; headache, fever, body aches, and sore throat. I then woke up to tingling numb fingers and severe hand pain that has increased daily. Today I went to the doctor and was diagnosed with carpal tunnel syndrome and started on antibiotics for Lyme. The test results are not in yet. My knee is also swollen and there is excess fluid in it. I think the carpal tunnel is a direct reaction to the tick bite.

Comment from: lea, 45-54 Female (Caregiver) Published: April 14

My dear brother was bitten by a tick whilst working as a vehicle inspector out west. He suffered chronic fatigue and body paralysis, and it affected his brain. His skin was a greyish color. The tick left a ring and a rash on his thigh. He felt like he was out of his body. He suffered with Lyme disease for 2 years and he aged significantly. The naturopath diagnosed but doctors offered no treatment. He took his life on September 9, 2014 as he couldn't take it anymore. He had played semi-pro golf was a successful insurance broker. The coroner has his blood, we would like it tested.

Comment from: Mya, 19-24 Female (Patient) Published: March 13

I was in 6th grade in 2002 when my mom noticed something was wrong. We didn't know it then but my body had been trying to tell me. I was sick for months, it wasn't until both my knees swelled up to the size of soft balls that I was taken to the doctor. One look and some short questions she realized it was water that was collecting there and she said she wanted to test me for Lyme to be sure. It came back positive, and I was given a week of antibiotics, and warned that I might have the symptoms linger for months later. That's when we realized my strange change in my sleeping habits and my constant fatigue was a symptom. It explain why I had gotten a nasal infection, allergy attack, two colds, the stomach flu and the flu in a course of two months when I never get sick. I have developed juvenile rheumatoid arthritis, have focus problems, muscle tics, I slur my words, I'm stiff constantly, and it has all but destroyed my knees. I also have a strange menstrual cycle because of Lyme. I was never bitten by a tick though. We managed to figure out that I had been infected by a mosquito nine months earlier after I had found a strange looking bruise. I never had the bull's eye rash. That was twelve years ago. Last summer my symptoms were getting strangely worse again. I went back to the doctor and was retested. That's when we found out my Lyme's was never cured the first time. Studies today show that a month of a stronger antibiotic was really needed. I am currently late stage 2, early 3, and I'm keeping steady with my symptoms. There isn't much I can do but be careful and make sure nothing gets worse.

Comment from: Bob, 65-74 Male (Patient) Published: September 26

My wife and I were tested for Lyme disease 3 years ago and both tests came back positive. My symptoms were never as bad as my wife's, but the doctor treated us with doxycycline for 13 months, about $3 each per month! He said that he, his wife and one daughter, also a doctor, has had Lyme. He believes a simple round of doxycycline for 13 months will totally wipe out Lyme! We are both cured as well as his family. Many doctors don't know that a few months of antibiotics simply will not kill Lyme.

Comment from: jackl, 65-74 Male (Patient) Published: July 17

On a Thursday I had just stacked a cord of wood, ridden 21 miles on my bike and then used my tractor to mow the lawn. I came and all of a sudden was wiped out. I couldn't stay awake. I remember getting off my bike and my Camelback was killing my shoulders. Felt pretty awful Friday and Saturday, woke up Sunday with a large red, very warm welt on my belt line and said I think I know what that is. I got a doctor's appointment on Monday. He laughed and said that is a classic symptom and prescribed 3 weeks of doxycycline. Some people I met while riding told me how the medicines really bothered them. It did not bother me that much, an occasional upset stomach but that was it. Finished the medications 2 days ago and feel fine and still riding. Glad I got the red welt and early attention. Seems to make a big difference. We live right next to a farm in Connecticut so tall grass and ticks are unavoidable. My neighbors at the farm related some scary undiagnosed Lyme stories; epileptic seizures and depression. So far I count myself as a lucky one.

Lyme Disease from Tick Bites
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.

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.

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.

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.

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.

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.

Lyme Disease from Tick Bites
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.

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.

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.

Lyme Disease from Tick Bites
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