posted
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. F explained 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
[ 12-08-2009, 01:49 PM: Message edited by: Anna Lee ]
-------------------- 12 Year Lyme's Disease Sufferer Posts: 13 | From Youngsville, Louisiana | Registered: Dec 2009
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posted
Hi Kacy:) I just read a thread on another younger girl on here. I just want to say how brave you are for fighting this horrible disease at such a young age. You have so much courage!
I'm so sorry about the financial situation. I am getting there myself so I am not sure what to tell you about that. I hope your insurance will hold out for you & your family. The whole insurance deal is another ball of wax that is very angering. I'm really sorry for your struggle:(
I know it's easier said than done but don't worry about what extended family members say or feel. They can never fully understand the pain unless they actually had LD. I wouldn't wish this on my worst enemy. You are so lucky to have your parents on your side:) Major kudos to them for being there for their children!!
As I am still new here, I think some of the more knowledgeable posters can help you with doctor & medical info and such. Still, you seem very smart about LD and for that you should be proud! Keep getting the word out about LD. I wish you luck and blessings on your journey. You have come so far!
Hugs, ~Beth
Posts: 50 | From Midwest | Registered: Nov 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Kacy,
Welcome! Sorry that you have to suffer with Lyme disease with the rest of us.
GlaxoSmithKline, the maker of Mepron, has a program called Bridges to Access to help people pay for Mepron (used for babesia treatment).
They require that you meet the eligibilty requirements and that you have no prescription drug coverage.
I hope you get all the help you need and acheive remission. You are too young to suffer forever.
Become as knowledgable as you can about lyme, coinfections and treatment according to ILADS guidelines.
You are your own best advocate.
It is a long road to recovery. Take it one day at a time.
We are all here for you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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The most incredible stories are told on this forum.
How could a doctor who removed 50 ticks, and had a positive tick test refuse to treat you? If he was afraid to, he should have had the honesty to say so and tell you to find help elsewhere. This is just so sickening.
I'm sorry you have been thru so much. Hope you are able to get mepron thru the program. Malarone is less expensive and it does help some people. There is also coartem, which is a new malaria med. And mepron patent lapses soon, I believe, so that might bring the cost down. The thing is that when there is a generic, companies who offer help programs for their brand name drug, typically stop helping. When a patent lapses, generics usually follow.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
We had called the drug company and they told us that they wouldn't be able to help us. I'm on malarone right now, but we won't be able to afford any more of it as it's looking right now.
-------------------- 12 Year Lyme's Disease Sufferer Posts: 13 | From Youngsville, Louisiana | Registered: Dec 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
kacy,
Try going to a radio station that may have a program to grant Christmas wishes...tell them your story...
or try church groups that may help you as a project....
or ask reputable banks if you may put a money collection container in their bank with your picture and need for money for life saving medication...
keep thinking...
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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The funds run out early and often, but perhaps they have a waiting list?
I disagree that you can't get better- I'm not a doctor, but my kid was sick for several years before treatment and her symtpoms are RESOLVED. Yes, she could relapse, yes she needs her rest, but she's active and pain-free.
Also, since you are not yet 18, you have the right to bring a med malpractice claim. Even though the statute of limitations may have run for your parents to bring the claim, it has not run for you and I agree with Lou, that doc was WRONG. Your family should consult a personal injury attorney to see if you have a med mal claim now. Even if it just pays your going forward costs or you settle with that doc's insurance company- it could make treatment much easiery to pay for.
Best of luck and welcome to lymenet to you and your family. Your understanding of your own complicated medical and financial situation underscores that you are obviously an incredibly smart person!! Keep up the fight.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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