Lyme Disease- if you have/had it, can you share your story

I am new to lyme disease. Was hospitalized and diagnosed with lyme early this month. I was doing much better, but just this weekend started to get more, different, painful symptoms and I am still on doxy. I am worried the med isn't working on me....


Here's my story. The day after memorial day (tues), I started to feel sick. Extremely tired, terrible headache, feverish, sore achy thighs. Weds- even more feverish, worse headache, utterly wiped out, depressed, stiff neck (from tossing and turning the night before from not feeling well). Left work early. had 102.8 fever when I got home. it would go down with tylenol, but then back up. nothing else was wrong. thurs-same stuff going on with fever. no other symptoms. went to first med. they ruled out a variety of illnesses, but said they were concerned and if it got worse or continued, go to hosp. later that night, fever went up to 103 and wasnt coming down. went to ER. waited over 4 hours, they told me it was going to be even longer before i was seen, so i went home. shaking with terrible chills all night. by 5:30am, fever was up to 104.3, and saw a small, painless "hive" on my upper thigh. went back to er and was seen right away. by midday, the hive turned to bulls eye rash. was being treated for lyme and meningitis until they ruled that out. herxed for awhile and fever went up to 105.9 before breaking. eventually it broke, and after it stayed down for awhile i was released on orals meds. felt good for about a week, but on friday started feeling bad again. insane headache. pounding every time i turn my head. my eyes hurt when i look up and down or side to side. saturday, my skin started becoming sensitive. by sunday it was spreading and my ribs, stomach and thighs hurt to the softest of touches. even a droplet of water falling on my skin hurts in those areas. this morning i was walking outside and felt like water droplets were hitting my hands and arms. but nothing was--just a sensation that lasted 5 minutes ago. i'm waiting to hear from my doc, but am concerned about these new symptoms....

Re: Lyme Disease- if you have/had it, can you share your story

First of all What a horrible experience.

Everyone has their own different experience. Mine was horrible shooting pains through my legs. My dr ruled out a few things, including lupus and arthritis, and found out it was lyme disease.

I was on doxy at first but it made me so sick that I violently threw up. It was so horrible because I cannot deal with vomiting. We switched to something else, I think a some kind of cillin, and I was tested after 30 days and was fine.

I still get pains in my hands and legs from time to time. I think they call them "phantom pains"

Re: Lyme Disease- if you have/had it, can you share your story

Make sure you are seeing someone who REALLY knows about lyme disease as you are not responding as you should with just oral doxycycline (ie infectious disease specialist etc). I know several people whose lyme disease turned into chronic lyme w/ other lyme associated infectious (other tick born diseases) because it was not treated appropriately/aggressively enough.