I will give you a brief synopsis of what has been occurring. Right now I am at the mercy of my HMO and have to see a doctor in network. There is an infectious disease doctor who said he can help in regards to Lyme.
Well, here it goes. In 1991 I went to the Andirondack mountains in New York state and visited Santa's workshop. We had direct contact with the reindeers that were in a stable and were able to hand feed them. I can remember getting bitten extensively from what we thought were black flies. It was so bad that blood was literally running down are necks. After that weekend I came home and was quite ill.
I went to an ER twice and both times they said, multiple insect bites to face and neck with very dramatic facial and neck swelling. I was placed on benadryl and tetracycline. I vaguely remember this whole ordeal except for notes that I obtained from the hospitals. I was a practicing RN at the time and remember the ENT doctor saying "oh we must worry about Lyme" and ordered a titer. But this was done on an outpatient basis and the records were destroyed after 7 years. Go figure...
Well, after this I had various bouts with gastritis, my gallbladder out, and sinus infections. In '95 I went to a dermatologist for my acne. She placed me on erythromycin for acne, then several days later I broke out with with a rash which was though to be an allergic reaction to the erythromycin. Because of this I was put on tetracycline. Then 2 weeks later I had another rash with a Psoriatic lesion on my right hand and arm, and on my legs, Gutlate type papules with large elliptical erythema plaques with trailing scales.
At this time the rash was thought to
be pitoriasis rosea, but I can remember her saying we need to check you for syphilis. I thought "great, I am 24 years old with that." But of course it was negative.
After that I still was plagued with on/off stomach problems. Then in Sept. '96 I became pregnant and had a miscarriage(then pregnant again right after). This is where the nightmare began. In summary, I had high bloodpressure in the first trimester. I gained 112 lbs during this pregnancy (most in the last 3 months of it)and my daughter was taken 4 weeks early. I was very sick carrying her.
I suffered headaches, muscle weakness and aches, generalized fatigue, shortness of breath of, and heart palpitations and pvcs on my ekg. Five days later I had an appendectomy with significant pus in pelveis which was confusing to them. I ran a high fever for days with IV antibiotics after. I thought I was going to die.
Since then it has been headaches on a daily basis with no organic cause; Carpel tunnel, no organic cause; muscle pain and weakness on/off. Also, fatigue, difficulty sleeping, mood swings, and unbelievable forgetfullness, like "where did I put my keys?" "MMMMM came to the store for what?" My husband says I'm a paranoid-schizo about everything, and obsessive- compulsive: "Did I turn this off?" I check things
a hundred times.
I attribute this to the steroids I am on. But who knows? They thought I had Lupus and bx was negative after me saying "hey I dont have this." Oh and last, cold sensitivity. I have prominent livedo reticularis of my legs, which is a purple type mapping of the veins beneath my skin. The Deramatologist said this is a sign of systemic disease, however, no one can seem to find my systemic disease./p>
I know I have gone on and on but that's my hx. Many people say it sure sounds like late stage Lyme. I must note my house is in Grand Island, New York, and deer are back in my fields. However, I don't know if Lyme is in Buffalo, New York. How do you find this out? Oh and I forgot on the list of symptoms, that my right knee clicks when I go upstairs and provokes constant pain. It ssems to go in cycles which is hard for me to define. I had an MRI on Wednesday and I'm awaiting the results. Do you know if Lyme arthritis shows on an MRI?
Sorry to go on and on. I am just trying to see if this may be it. My picture as far as lab work goes for Lyme will never show up cause of steroids, and that makes me mad. Thank God I had the strength to challenge my dx of Lupus. Hope to hear from you -- any insights would be great.
Thanks,
Patty from Buffalo, New York
PS.. My last cbs showed elevated wbc with an increase in neutrophils. Do you know what this means?
The Lyme Disease Quilt Page
Please click on the mailbox to send me your comments
Lyme Quilt main page
