Does anybody have a story like mine?

October 2013 in Central Illinois 7 pm on a Friday standing and talking to my daughter in her kitchen. All of a sudden I feel like a tiny pin prick on right side of groin area. Seemed weird. I live next door so I went home to check it out. Didn't notice anything at first. Sat down in recliner and all of a sudden I got cold sweats and shaky. I felt I had been bit by something. Tick came first to mind because my son inlaw was working out in the woods line locating and had been coming home with ticks on his coveralls. My husband works pipeline and his work had been educating them on ticks because of the amount of tick disease in Illinois. So I jumped in the shower to see if that would take care of whatever was happening to me or what I felt and look myself over. I found nothing but when I got out I noticed my lymph node on the other side of my groin leg area had swollen up the size of a golf ball. Then I started breaking out on my torso with a rash that looked like chicken pox. I feared it was shingles. The next day I went to convenient care and they said it looked like I had been bit by an insect and gave me a cream. By Monday the exhaustion and flu like symptoms started and I just didn't feel right about the whole situation and went to see a dermatologist and he took a biopsy. I also went to my gyno to have her look at the lymph node. I was put on prednisone and another cream. Dematologist sent me to a Infectious disease doctor. Of course he actually said "there are no ticks in Illinois in October". I couldn't believe he said this. I could tell right away that he was not interested in talking about me possibly being bit by a tick. By this time the rash was disappearing. Told me if I had any more problems to come back. I started feeling better but still had problems with depression and exhaustion thoughout the next few months. I noticed when I was stressed I would still have a couple more rash spots show up. They show up like the chicken pox spots and they aren't itchy or painful. about a week later they would fade away and some have scarred. I work at a desk all day on the computer. I noticed that my arms and hands were going numb and tingly. One day all of sudden I was writing and I couldn't feel my left arm. Then I couldn't use my hand at all. I stood up and the whole left side was completely numb feeling. I went to the doctor and he set me up for tests. I was scared of stroke. I'm a 55 yr. old woman. Then 2 days later same thing started to happen again and my face was feeling numb so the nurses told me to go to the emergency room. They kept me 24 hours and did all kinds of tests. Lyme came back negative. Nothing else showed up either. Looked like I was a healthy middle aged woman. I started feeling better again. This was spring of 2014. October 2014 started feeling like crap again. I broke out in the rash again, feeling depressed and exhausted. Went away again. By November 2014 I'm having some aches in my back and then I start having trouble with my achilles tendon in my right leg. I couldn't hardly walk on that leg. I go to a podiatrist. They put me on prednisone. I'm dealing with this until up to beginning of February 2015. I break out again with this rash and feel really exhausted again. My leg is better but now my right shoulder starts to hurt a little. Then the pain starts to become intense. From my right shoulder blade down the back of my arm to my finger tips. I have broke 5 ribs before and that pain was nothing compared to this pain. Very intense cramping/muscle spasm/charley horse feeling 24/7. Went to doctor and said probably a pinched nerve they have put me on prednisone "again". Went to another doctor 2 days later and they put me on vicadin, muscle relaxer, and a nerve pill to take at night that patients take for nerve pain from shingles and seizures. Last Friday saw another doctor and she took xrays and we talked about my whole experience. She did a bunch of blood test and another Lyme test. Told me if it came back negative they wouldn't do another one. I know in my heart this is all related to that fall night in October 2013. If I didn't have that rash keep coming back then I would say it's just my age and work on healthier lifestyle. I was pretty healthy, walking, etc. until this all started. Now I have to force myself to walk at all. I'm also dealing with Hashimoto's thyroid now. Thanks for taking the time to listen to me. I know my family doesn't understand. I still have the pain this morning but it's gone from a scale of 10 and up to basically a 4/5. I'm off predinosone and just take a vicadin or muscle pill when the pain gets so bad I can't stand it. These meds mess with my head so much and I can barely function. I'm just reaching out to see if anybody at all has had this kind of experience. Thanks again!

 

Thanks. I needed to vent. I was a healthy active woman until all this started and doctors just keep saying that bite has nothing to do with it since it's been so long.

Some parts of your story are very much like mine. You said in spring, 2014 you were feeling better and then in October 2014 - symptoms got worse.
My symptoms started in April, 2013, and by June, they were improving. But, by Sept, many more symptoms hit me.

The other part of the story that is like mine: My first symptom was intense shoulder blade pain that radiated down my arm, hand and fingers. My arm actually went limp one evening when it all happened.
Diagnosed with a pinched nerve in the neck by my PCP, but my chiro said it was Thoracic outlet.

I know you were looking for a LLMD...how did that work out? Did you get some names in your area?

BTW - it definitely sounds like Lyme disease to me!

First test was negative and waiting now on 2nd lyme test to come back. Just did it Monday so it will probably be a couple weeks before it comes back. I will look into the lyme doctors in my area. I'm so glad I found this website. Thanks again for all your feedback and listening to me.