Friday, May 20, 2011

The RSD/Lyme Connection...

Something that I am asked a lot about is the connection between my two illnesses- Lyme disease and Reflex Sympathetic Dystrophy (RSD).

Did one cause the other? Which came first? Are the two even related at all…or were you just unlucky enough to develop both?

Because May is Lyme disease awareness month I thought it was a good time to try and begin to explain a little bit more about these two very complex medical issues and how they relate to one another.

As anyone who has been a patient with any type of long-term illness knows, you tend to become an ‘expert’ of sorts in your condition. There are just certain things that cannot be learned through a textbook… but are instead, earned, the hard way, through experience.

These past years of being in and out of doctors offices and hospitals has given me the privilege of meeting and sharing stories with a lot of others who are facing some of the same health challenges as I am.

It seems that the big difference between my case and theirs is that my RSD did not begin after an injury. Both times it began with an infection.

Through having this blog, several others have reached out to us, sharing that they too have been suffering from RSD after an infection—especially Mono and interestingly, many have also tested positive for Lyme at some point in their lives.

By most doctors, RSD is considered a “trauma disease”— It is usually a physical injury such as a sprain, fracture, or surgical procedure that causes it. Usually after an injury the nervous system shuts down within minutes to hours, but for some reason, in RSD patients, the nervous system malfunctions and continues to send constant pain signals to the brain... Kind of like a car engine that continues running even though the ignition is off.

It's unknown why some people develop this condition after seemingly minor injuries or otherwise benign infections.

However, it is well known that both viral and bacterial infections (like shingles, Epstein-Barr, CMV, herpes simplex, HIV, leprosy, syphilis, lyme, etc) can trigger a strong pro-inflammatory immune response causing a wide range of neurological problems.

These infectious illnesses can also cause widespread indirect nerve damage by provoking an autoimmune disorder, in which the immune system attacks the body's own myelin sheath (the insulating covering that protects the nerves)—think of it as trying run electricity through an extension cord that is missing the protective covering. The result is diffuse, searing neuropathic pain. I was treated with high doses of IVIG for nearly 1 year to try to reverse this process known as demeylination.

In this case, it is the immune system that never ‘shuts off’ and the infection which provides the fuel for this process to develop and persist.

The immune cells continue interacting with the peripheral nervous system, releasing pain producing chemicals and you begin to develop heightened activation of the pain pathways.

Because every peripheral nerve has a special function in our bodies, many symptoms can occur when these nerves malfunction. Some may experience numbness, tingling, and pricking sensations, sensitivity to touch, or muscle weakness. Others have more extreme symptoms, like burning pain, muscle atrophy, fainting spells, paralysis, ulcerative skin lesions, or internal organ dysfunction. In the most severe cases, you may become unable to digest food, maintain stable levels of blood pressure, or even regulate your body temperature. The end result is total dysfunction of all of these components, resulting in hyper-arousal of the nervous system, making any type of normal stimulus (like touch, light, sound, vibrations, etc) painful and intolerable.

It is difficult to say exactly which of these symptoms can be directly and solely ascribed to either Lyme or RSD... and which are more complex in origin.

There have been several papers recently discussing the possible role of previous infections (particularly Epstein-Barr virus (EBV) in the development of autoimmune disorders.

Is it possible that this has some significance in the development of an autoimmune component leading to RSD?

Are certain people more genetically predisposed to develop symptoms of RSD post- infection than others?

And, could this account for the degree of severity of the condition in a sub-group of RSD patients, like myself?

It seems reasonable to believe that the connection between these illnesses is not as rare of an occurrence as most might think.

People are like jigsaw puzzles. Take a piece out and you no longer have the whole picture…

It goes without saying that this is not a medical opinion :) but just my 2 cents worth. This is a topic I think about a lot as I continue to recover and gain back what these illnesses have taken away from me. I know I have a God who is bigger than any illness and that He has blessed me with doctors who are curious and open-minded enough to make the connection between these illnesses in my case.

…There is definitely more to come on this…


The Lyme documentary “Under Our Skin” will be airing on PBS WLIW channel 21 in New York this Saturday, May 21st @ 3pm! Set your DVR's!


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Sunday, May 8, 2011


Happy Mother's Day to our Super Mom!
We are very blessed to have the privilege to call you Mom and to have the honor of being called your daughters.
You mean the world to us! We love you!

Notes to our amazing Mom:


Growing up girls dream of becoming mothers to little girls, you got lucky with three of them! I too dream of being a mother to a little girl (or girls!) and only hope that I can be half of the mother to them as you are to me, Jessica and Michelle. You have set a very high bar for us and I hope that we can carry on your loving, forgiving, excitable, fun and nurturing legacy. You went from being my mommy, to my mom to my best friend. I will always, always, always love you!

Love, Katherine!


Mommy is not just a word.
Mommy is the one who helps you when you're sick.
She is the one person who knows you so well.
Mommy is always there to comfort you.
Anyone can become a mother.
It takes a special person to become a Mommy.
I love you Mommy, Happy Mother's Day!

Love, Michelle



They say a mother is only as happy as her least happy child...and we all know who 'that child' has been in our family these past few years. I know everyone is always commenting on how much better I am doing, but I am loving every minute of seeing YOU feel free to be happy again and regain your life back too!

Your love comes out, in all the things that you do, in hundreds of ways every day. I hope you know none of it goes unnoticed. Nobody loves me like you. The truth is that you deserve to hear much more than I can say. I love you!

Love, Jessica

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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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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!