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Sheila's Story

Hi my name is Sheila. I am a 27 year old mother of 3. I started having joint and muscle pain in late '98 early '99. After testing me for everything under the sun my Dr. finally said in May '99 "well have you been bitten by a tick?" I wasn't sure. Now, this is the same Dr. that treated me with steroid cream in June '98, for what she called a spider bite (which in hindsight I know was the tick bite). I tested positve in the Western blot but the Dr. thought it to be a false positive; she said I was fine and I never saw her again.

The last day of Sept '99 I received a letter from this Dr. saying basically oops!! "your test in May was positive and you need immediate antibiotic therapy. Well, oops is right. I was 8 weeks pregnant with my daughter. I of course contacted a lawyer, and a new Dr. I was put on amoxycillin, for 1 week by my OB. My beautiful daughter Carli, was born in June 2000.

She seems to be fine other than gastrol reflux and a short period of colitis which the Dr.'s say is normal in some babies. And she is testing ELISA neg., but I am so scared that this is not the right test. I read so many of your stories here, and I am so scared that my baby will suffer like this, and that I am not doing enough to pursue this. My husband who has a hard time understanding this disease, thinks that I am just looking for it if I push the issue. I am really confused??

As far as I go, I have found what I think to be a good LLMD. I have to travel from MD to NJ to see him, but I think that it is worth it. I have just recently had a SPECT Scan that showed lack of blood flow to the left side of my brain. I guess that is why I now get lost everywhere I go, and get this pressure in my head that is unbearable.

My insurance wants a positive PCR before any longer then 28 days IV will be approved, so I am doing PCR's every other week until I get a positive test. That is a real inconvenience, but so is everything else w/this disease. I have hope that I will get better. I have to; I have 3 very active children. I am a stay-at-home mom and they count on me to be well. I don't want my children to think of me as the sick mom who can't get out of bed, so I am off to read, read, read, and I guess try to cure myself.

My symptoms now are: I get this pressure in my head and my ear and I have severe hypothyroidism. I have a great Dr. for this in DE who is experienced in Lyme. Other symptoms include arthritis in knees(my feet hurt for the first 20 minutes after I get out of bed in the morning), and most of all, these God awful headaches.

I read alot about resting, but I have found for myself that if I get up in the morning with the persistance that I am going to have a good day, and push myself to do things and get my mind off of it,that I really do feel better. Maybe I am fortuanate that I can do this. I truly hope that in the very near future there is some breakthrough in research for this disease.

I guess it will take more Doctor's contracting Lyme themselves, or maybe the CEO of some big insurance company. Who knows?? I have faith and I hope that everyone else has that too. Lastly, I am so thankful for this site and so many others that everyone has formed here on the Internet. I think that so many of us feel alone with this disease and don't want to burden our families. It gives me a place to vent and cry and laugh.

Thank You, Sheila

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