Monday, May 2, 2011

May is Lyme Disease Awareness Month!

May is Lyme Disease Awareness month, so we are turning the blog "Lyme" green as a reminder to all to take extra precaution. Do a tick check!

I remember when I was first diagnosed with Lyme disease and Babesiosis (another tick-borne disease, as Lyme rarely travels alone) nearly 5 years ago.

I remember my family and I actually feeling relieved... happy even. The months of persistent fevers, severe headaches and swollen glands, the enlarged spleen and liver, abnormal blood counts, flu-like feelings and inflamed joints, numbness and weakness, bouts of nausea and vomiting, the shooting pains, sweats and chills...finally all had a name.

We would find the best doctor for my condition...and then we would treat it....and then I would get well....and we would all go on with our lives. There was an end in sight and we were ready for this to be over.

That's the way it's supposed to happen, right?

...Or so we thought.

At that time of diagnosis I never could have imagined the medical nightmare I was about to be thrown into, a world where doctors risk their careers to treat their patients while under harassment from insurance and medical boards and where everything about the disease-- from the diagnosis, to the treatment to the prognosis is so controversial.

I certainly never could have imagined how the bite of a tiny 'insect' would forever change, and nearly take my life from me.

The thing about Lyme is that if it is diagnosed when you are first infected the disease can be (and usually is) effectively treated with a course of antibiotics. But when the tick bite is missed or a person goes months or even years undiagnosed, the disease enters its later stages where it can invade virtually any part of the body- including the heart, nerves, muscles, joints, skin and digestive system- In my case, I lost the ability to eat, walk, stand or even sit up. This disease has the potential to cause any combination of complex and disabling symptoms.

During this later stage, the infection can also become deeply entrenched in the brain and central nervous system causing severe neurological illness and symptoms ranging from headaches, dizziness, memory/concentration problems, fatigue and sleep disturbances to tremors, fainting, seizures, numbness and tingling, sensitivity to lights, sounds and other sensory and neuropathic pain syndromes (such as RSD), to stroke and paralysis or even death.

As the disease progresses it becomes incredibly difficult to treat, and even with treatment, a lot of the time there has been so much damage done to so many systems of the body that it is very hard to reverse.

For most patients with tick-borne illnesses, the diagnosis is not the "end in sight" that you hope for. It is just the beginning of a long road to recovery.

That is why it's so incredibly important that everyone has greater access to information about Lyme and tick-borne diseases and are made aware of the devastating consequences of it, especially because early detection and treatment are so essential.

I'm really excited that in honor of Lyme Disease awareness month PBS will be showing the Lyme disease documentary, Under Our Skin!This is the first time that the movie will be on national television!

You can use the link below to search for when it will be airing in your area.

If your local PBS station has not yet scheduled a viewing, call or email them to ask them to!

It is my hope and prayer that increased research and awareness efforts will help to educate others and arm them with the knowledge necessary to prevent others from having to go through what I had to. Recovery is possible, but Lyme disease is preventable!

God bless all who are still struggling daily with Lyme disease and the doctors who risk all to treat their patients. I have the deepest respect and utmost gratitude to all of the Lyme physicians who helped me along my journey, especially to Dr. L.

For more information please read:

Lyme Disease Basics by LDASEPA

In Spanish-

Enfermedad de Lyme y otras infecciones ascociadas

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Anonymous said...

Sweet Dear Jessica, thank you for helping people see the journey you have been on and guiding people to the ways to find out more about Lyme and RSD. You are a missionary for a far greater mission than most will ever have to journey on, all for the good that will come out of the story you are sharing.

We love you and pray and think about you and your wonderful Momma. Peace be with you sweet friend and come home healed to us soon.

Kisses to nurse Sarita (aka, friend Jessica's Mom, sister of love, God's child)

Nancy & Joe

Anonymous said...

For a second there I thought I was at a different blog. Thanks for all the good information on lyme disease.

We are so happy to hear that recovery is POSSIBLE! With God All things are possible, you are living proof of that.

May He continue to bring you to full recovery and may He continue to bless the doctors and researchers who are working so hard to help so many.

With love and prayers,
The Turners

Fern said...

Just catching up on your blog. I am so thrilled to hear some of these things in your words. We have to look at where we were to know how far we have come. You have a candid way of looking at some very rough years. It is clear who has you in His loving arms!

Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)

As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!

Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.

Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.

Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!