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Originally posted by kacy12592: Hi to all, my name is Kacy and I live in Louisiana. I'm currently 17 years old and I will be a graduating junior this year.


Well, my whole struggle with Lyme's Disease started when I was 5 years old. My family and I took a summer camping trip to Little Rock, Arkansas. Whenever we returned home, my mom noticed several strange freckles all over my body; almost like chicken pox.


After developing the bull's eye rash, muscle and joint aches, headaches, and several other symptoms, my mom brought my to me pediatrician we had at the time.


My pediatrician removed over 50 deer ticks off of my body. They sent them to Texas A&M for testing, and the test results came back saying that they were positive for Lyme's Disease. Though the tests were positive, my doctor refused to treat me for Lyme's. Instead, he left us on our own.


After harassing doctors about this diagnosis for 6 months, my mom was able to manage to persuade one doctor to treat me. Unfortunately, the doctor would only give me one week's worth of antibiotics.


I felt a little better for a while, and day to day life improved, until a year later. During my 6th birthday party, I was brought to the ER because I was complaining about an intolerable headache and fever. The E.R. diagnosed me with Spinal Meningitis. At the time, we weren't aware of Lyme's Meningitis.


Months and years of my life followed with constant ER visits, infections, viruses, chronic migranes, TMJ, IBS, RLS, 3 cases of Mono, etc. Throughout these years, my attendance at school was horrible, forcing me to be put on and off of homebound.


About three years ago, I was on my high school swim team, which was natural seeing as how I had been on and off of the local swim team since I was 5 years old. I had been forced to be on and off of it because of my medical issues and my love of swimming.


Well, during my high school swim meets, after swimming one length of the pool I would become extremely nauseated, my legs would go numb, I would vomit everything in my stomach, and I would have horrible hot flashes.


One meet short of winning my letterman jacket, my family decided that I couldn't endure it any more. We flew up to chicago and had a specialist try to figure out what was wrong with me, after doing alot of research. They tested my immune system, for Lyme's disease, etc. All of which came back negative. Then, the doctor did a tilt table test. This test diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS).


Although this diagnosis didn't give us all of the answers we were looking for, it still gave us something to go on. So, we flew back home and kept in contact with the doctor via phone.


During my junior year, this year, I decided to stay on homebound due to my history of absences in school. My mom did alot of research along with me, and finally through the ILADS, we found a doctor less than two hours away from us.

We went to him, and he re-tested me for Lyme's, tested my immune system, he basically tested everything. Whenever the tests came back, my family and I weren't surprised. I was a double positive and CDC approved for Lyme's, I had low b-12 levels, high yeast levels, and 18/200 for my immune system.


So, we finally had our diagnosis. The next step...treatment. Unfortunately, Dr. Fexplained to us that since I've had Lyme's for so long, we wouldn't be able to cure it. But, remission would be a realistic goal.


The past month has been filled with antibiotic injections, surgery to have a port put in ( my stomach can't handle the oral), herx reactions (sores all over my face, hot flashes, cough, runny nose, sinus pressure, etc) , and being isolated because of my low immune system.


Now, my parents and I are struggiling to make my dad's side of the family understand that I have a legitimate illness and that I'm not just "faking it". Since I was little, they've always thought that I've just been trying to get out of school and work. Treatment, currently, is low dosage antibiotics, to avoid a major herx reaction.

Also, I've developed a co-infection (Babesia). We're trying to find means to buy the medication, but unfortunately it's $500 for only a month's worth. Not only do my parents struggle under my financial burden, but also my 4 year old brother's (he has hypoplastic heart syndrome; half of a heart).

If anyone has any ideas or suggestions on how to pay for this medication, please let me know. Also, our insurance is threatening to drop me because of all of the IV antibiotics. Any suggestions?
--Kacy

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Hi Kacy! Welcome to the board. I'm so sorry you have had to go through this at such a young age.

I was sick for 35 years and am 100% better, so keep fighting, you can win this battle.

I don't have suggestions for paying, but I've broken up your post so that it's easier to read in hopes that it helps someone else to answer you.

[ 12-09-2009, 11:50 AM: Message edited by: sixgoofykids ]

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