Monday, December 29, 2008

Our best for 2009!

We're settling in for another winter storm and we're enjoying the holidays very much!

I saw my optometrist today. The corneal scarring is limited to the left eye, does not block my vision and is now faint. Hopefully, by the end of my treatment, it will be gone forever. Muscle weakness responsible for my incidences of double vision, difficulty changing focus and queasiness will also, hopefully, improve with time. He was so happy that we finally have some answers for my health! Me, too! : )

Sending our best for a wonderful 2009!

Monday, December 22, 2008

Thank you!

This morning a friend of mine "kidnapped" me for what I would soon learn was "Kim Day." My friends had been planning a day to spoil me. Our first stop was the hair salon for a much needed cut and style. I was pampered with a pedicure, which felt glorious on my itchy skin, then on to some delicious soup at one of my favorite restaurants, Julienne Tomatoes and shopping at a local sports store where I was treated to new exercise pants and shoes for physical therapy, a wonderfully cozy jacket that is perfect for warding off my occasional chills, and the cutest pair of boots to safely walk around outside in. When I tried to learn who to thank, I was just told that a lot of people were a part of it. So I am sending my love and a huge thank you for the wonderful welcome home present many of you sent my way! Again, wishing you your best holiday ever!

Saturday, December 20, 2008

I'm Home!

My picc line came out today. Hooray! It feels great to have it out and to finally be home! My youngest kept asking me if I would be home for Christmas? The answer is yes. Wishing you a wonderful holidays!

Tuesday, December 16, 2008

The Perfect Storm

In 2005, rheumatologists believed I had Lupus because my ANA was so high. The treatment severely compromised my immune system with three drugs, CellCept, Plaquenil and Prednisone. My condition did not improve. It grew worse.

A year and a half ago, I began to question Lyme disease. The symptoms matched. I dug through my bloodwork and of 40 tests, I had never had a positive Lupus test. The protein in my spinal fluid was elevated in three spinal taps with a small number of white blood cells in each. I had a red lacy rash on my skin. I was to later learn I had human parvovirus and Epstein-Barr virus in my system.

My ANA continued to climb. I developed a nasty respiratory infection, made worse by my compromised immune system. Two antibiotic treatments resulted in a normal ANA for the first time in years. I came across a study in the Journal of Rheumatology written by a pediatric rheumatologist who warned rheumatologists to beware of patients with human parvovirus and Lyme disease. Their bloodwork presents as systemic Lupus. A plausible explanation for my ANA.

Though my symptoms were atypical for Lupus, doctors were hesitant to look for other explanations. I had two negative Lyme tests, but later learned that it would have been virtually impossible, due to my compromised immune system, to have a positive Lyme test.

Fortunately, I met an infectious disease specialist who understood the disease. I have been responding well to treatment and no longer take any medications that compromise my immune system. My bloodwork from last week yielded a positive Lyme test!!!

There is a flaw in the treatment of Lupus and Lyme. If the assumption of Lupus is made before ruling out Lyme disease, the treatment of one compromises both the doctor's ability to diagnose, as well as the patient's ability to fight the disease. It is the making of a perfect storm.

Tuesday, December 9, 2008

An Amazing Repair

The nerves in my right arm are beginning to function again and as a result, muscle is returning to parts of my right hand! The change is quite striking! I can hardly wait to see my physical therapists. I know they'll be as thrilled as I am. I continue to gain more control of my legs, as well.

My weekly appointment went very well. Symptoms continue to be consistant with my diagnosis and my physician is very pleased with my progress. Now that the Lyme has been knocked down, we did extra bloodwork today, to survey viruses and co-infections. This will give my doctor an excellent idea of what is needed for my next phase of treatment.

Hopefully, my picc line will be able to come out in ten days and I will be ready to begin my next phase.

Wishing you a wonderful week!

Thursday, December 4, 2008

Better Days

We have the most wonderful friends and family in the world! Thank you!!! Your gifts, when times are so hard for everyone, are so very much appreciated. I can't even begin to find the words that express our endless gratitude and love for all of you! Your gifts will help with gas, medical bills, food, a donation to the The Lyme Disease Foundation and Santa. Thank you!!!

This song by The Goo Goo dolls has long been on my mind.

"And you ask me what I want this year
and I'll try to make it kind and clear
just a chance that maybe we'll find better days."

As my dream for better days becomes more and more a reality, we are so very grateful for all of you this holiday season!

Wednesday, December 3, 2008

Two weeks to go

I am 2/3 of the way through the i.v. therapy! Though I will continue oral antibiotics for several months, the progress I have made in my first month is very exciting. I woke up today feeling like I am getting a second chance at life. Each day, there is a little more improvement.

The face that looks back at me in the morning looks more and more like my old self. The swelling on the left side of my face, part of my existence for two years, is subsiding. The deep circles under my eyes are not as dark and some of my color is returning. If the lesions on my cornea are caused by Lyme disease, there is a good chance they'll disappear with treatment. Just one more symptom that confirms the urgency of my current treatment. My thinking is clearer.

My walking is improving. It was becoming very difficult to walk fluidly. I was losing control of the function of my legs. I am so excited to tell you that I am walking so much smoother, now. Strangers no longer look at me with a concerned look, wondering if they should offer help or cross to the other side of the street, when I go to the post office. : ) Those darn doors are still pretty heavy to open, but in time...

My headaches, which I've had non-stop since 2005 seem to be abating!

Words can not express my deep sense of gratitude for the care I am receiving.