For the prayer warriors who are kind enough to lift up my name...

Thank you for your kindness. I cannot express how much it means to me to have the power of your prayers behind me. Jennifer has done a wonderful thing by bringing us all together. Please leave messages here, too, if you'd like. It is nice to hear from people around the world who care enough to do this. I want to keep you all in my prayers too, so I would love to learn more about you. In return, I will try to tell you my story as fully and completely as I can. I hope it will not bore you (I'm kind of verbose)... my goal is to bring awareness to those who don't know much about this disease, and to bring hope to those who suffer as I do: you are not alone.

My case history (minus the personal details... if you want the long version, complete with glimpses of my personal life, visit this post: The Whole Story)

I was bitten by a deer tick when I was three years old. All the signs pointed to Lyme -- fever, flu-like symptoms, painful joints so swollen that I couldn't move, and a grapefruit sized, bright red, bulls-eye rash at the site of the bite (my left ankle). My parents rushed me to the nearest hospital. They started me on IV antibiotics and did a western blot, sure it was Lyme. My mom had even saved the tick but they threw it away. It's definitely Lyme, they claimed, the test will just confirm it.

Well, the test didn't confirm it. I was transferred to the Children's Hospital of the King's Daughters, an outstanding pediatric hospital in Norfolk, VA, not too far from my home. They diagnosed me with EVERYTHING. Juvenile Rheumatoid Arthritis, various cancers, mononucleosis, and a variety of other things. My father still has the tiny bracelet I wore around my wrist, with each diagnosis recorded in his handwriting. When I was eventually diagnosed, as a result of his persistence (along with my mother's), and he told me he had kept that bracelet, I cried.

I spent my childhood knowing I wasn't quite right. I had infection after infection, and my organ systems slowly started to fail in various ways. But what none of us realized was that I had no recollection of feeling well. I didn't know how bad I felt. I fought day in and day out to get up, go to school, take lessons, and somehow managed to stay in the gifted and talented program. I repeatedly won awards for my writing and was a straight A student. But something was just wrong. Fainting spells, a racing heart, headaches, being thin as a rail, aches and pains, opportunistic infections... the list goes on. But though I was in and out of the pediatricians office frequently, and a regular visitor at CHKD, I kept going until I was 21.

I had gone to college a year early, when I was 17, to escape the glares and accusations of a system that labeled me as a hypochondriac, liar, and psychologically unstable. I was blessed with the ability to keep up my grades, so skipping my senior year was an option. Getting out helped, but I started ailing by my second semester. Finally, when I was 20, my adviser called my father and told him to bring me home and figure out what was wrong with me, fix it, and send me back. She believed I didn't feel well enough to attend classes. She knew I was passionate about learning because she took the time to watch me. And she was alarmed by how hard I had to work to do the things everyone else in my class took for granted.

It saved my life. My dad, on the advice of a colleague with Lyme, took me to an LLMD. She put me on Doxycycline. Nothing happened for six months. I had to leave school again. This time, dad administered every dose himself, mom force fed me when I threw up from the side effects, and I woke up in the middle of the night to take certain supplements. But at the end of the next six months I felt... GOOD.

I went back to school and got a 3.75 GPA my first semester back, and a 4.0 my second semester back (it was my senior year). However, by the time I was halfway through the year, my health was failing -- night sweats, tachyarrythmias, exhaustion, and massive, rapid weight loss. I refused to believe it was back, and spent some time in denial (my blog has the whole story). Eventually I found myself with a PICC line on IV ABX, wasting away. I wished for death. I didn't see another way to get relief.

Finally, after six months with the PICC line, my LLMD refused to treat me anymore. She said my case was too complex, she was not comfortable treating someone who was so ill. That's when I found the doctor who changed my life; a soft spoken warrior in Armonk, NY. My "Dr. L." Under his stringent care, my body began to recover. He brought in a neurologist, who helped diagnose my seizure disorder (part of it was instinct, part of it was a 72 hour vEEG that indicated a severe seizure disorder within 15 minutes of footage). Dr. L ordered a SPECT scan, which showed moderate to severe global hypoperfusion (it means low blood flow to all of my brain). He ordered blood work and found so many co-infections... and he got a CDC positive Lyme western blot. Not that it mattered. Insurance companies never fail to find a way out of paying for treatment. But it gave me peace of mind to see all of the undeniable proof. To know that you aren't crazy, to know that the taste of normalcy that you felt during your remission can come back, to think you might someday be cured... it gave me hope. Hope was what I needed.

I have been fighting Babesiosis, my most serious infection, for about a year now. It's still not gone, but the treatment seems to be having an effect on me, at least. It is painful, I can't lie. Some days I would rather give up. But I have to keep going, for all of the people who count on me, who care about me, and who believe there will come a day when I am free. I have spent my life in the chains of a disease that few people believe in or understand. I ask that you pray that we will find the key to release me from these chains... or at the very least, that I will make peace with my cage and find a way to make my life useful in spite of the things that limit me. Thank you again for your prayers. You are all in my heart.

For those who are interested, here is a list of my symptoms. Those which are currently the most troublesome and/or prevalent are in italic red.

-The Tick Bite
1. Tick bite
2. Rash at site of bite
3, Rashes on other parts of the body
4. Bulls-eye rashes

-Head, Face, Neck
1. Unexplained hair loss
2. Headache
3. Twitching of facial/other muscles
4. Bell's palsy
5. Stiff or painful neck
6. Sore throat

-Eyes/Vision
1. Double/blurry vision
2. Pain in eyes
3. Oversensitivity to light

-Ears/Hearing
1. Pain in ears
2. Oversensitivity to sound

-Digestive System
1. Constipation
2. Irritable bladder
3.Upset stomach
4. Gastro-intestinal Reflux Disease (GERD)
5. Nausea w/vomiting
6. Nausea w/o vomiting
7. Vomiting w/o nausea
8. Colitis

-Musculoskeletal System
1. Joint pain and swelling
2. Stiffness of joints, back, and neck
3. Muscle pain and cramps

-Respiratory and Circulatory Systems
1. Shortness of breath, cough
2. Chest pain
3. Night sweats
4. Heart palpitations
5. Edema

-Neurologic System
1. Tremors/unexplained shaking
2. Burning or stabbing sensations
3. Weakness/partial paralysis (intermittent)
4. Pressure in head
5. Numbness/tingling/pinpricks (intermittent)
6. Poor balance
7. Dizziness
8. Difficulty walking
9. Increased motion sickness
10. Lightheadness/wooziness
11. Seizures
12. Myoclonic jerks
13. Narcolepsy

-Psychological Well-Being
1. Mood swings/irritability
2. Feeling as if you are losing your mind
3. Overemotional reactions
4. Too much sleep
5. Insomnia
6. Difficulty falling/staying asleep

-Neuropsychiatric
1. Getting lost in familiar places
2. Dyslexia type reversals
3. Night terrors
4. Panic attacks
5. Ferocious nightmares
6. Brain fog
7. Feelings of rage
8. Abnormalities of taste and smell
9. Heightened sensitivity to vibrations
10. Depersonalization
11. Spatial problems
12. Appetite changes
13. Obsessive compulsive acts

-Mental Capacity
1. Memory loss
2. Confusion/difficulty in thinking
3. Difficulty reading
4. Speech difficulty (slurred)

-General Well-Being
1. Unexplained weight gain and loss (fluctuation)
2. Extreme fatigue
3. Swollen glands
4. Unexplained fevers (both low and high grade)
5. Continual infections
6. Migratory pains
7. Symptoms began with a flu like illness, after which you have not since felt well

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As I mentioned in my bio, there are two other things I need prayers for. First, my boyfriend Phil, who is also my primary caregiver, needs his spirit lifted as much as I do mine. It breaks his heart to watch me suffer, and it breaks my heart to cause him pain. He has taken the best care of me that anyone could wish for these past three years, and I hope he will be blessed with the same level of healing for his heart that I need for my body. He has been my personal angel on earth, so please ask God to send his angels in Heaven to watch over him. I would also ask a little prayer for the rest of my support network as well... my family by blood, and my extended Lyme family; the people who have supported me and guided me through this, even while their own health failed. I am so blessed.

The other prayer I ask for is also related to my health. I recently found out I may have lymphangioleiomyomatosis (LAM... don't worry, even I can't pronounce the proper name). It is a genetic disease, passed from mother to daughter, exacerbated by pregnancy, which causes multiple lung collapses, cysts/tumors on the lungs, and eventually turns them to smooth muscle tissue. The only treatment at present is a lung transplant (once the lung or lungs are no longer functional), but the disease will eventually do the same thing to the new lung, so it only buys a few more years. The disease moves less aggressively when it is sporadic, more aggressively when it is inherited. My symptoms onset 15 years earlier than my mother's did, and her mother did not have LAM. So, with no cure in sight, this disease is always fatal. It robs you of the ability to have children, not only because you might pass it along, but because pregnancy accelerates the disease. Both of my mom's lung collapses happened shortly after she gave birth.

I am supposed to schedule tests for the disease as soon as possible. A positive high resolution CT scan would clinch the diagnoosis, but a negative one does not rule it out -- it would mean a lung biopsy, of one of the three cysts I currently have on my left lung. It would definitely cause the lung to collapse... and my left lung already collapsed twice, about ten years ago.

Please pray for my mother and I as we wait for these tests and their results. Please pray for our friends and family who are worried about our health. And please pray for us: that we take whatever news the tests bring us with grace, courage, and faith.

Again, thank you for taking the time and energy to pray for me. May God bless you and keep you safe from harm. If you suffer from a chronic illness as well, I wish you healing, good health, and happiness. You deserve it.

Lymie love...
Cat