Friday, May 3, 2013

Exciting news! :)

Hi everyone!

I just realized I haven't updated this blog since February!! Oops! Time seems to move by so fast! I am still feeling incredibly well & making continued progress in my recovery!

I have some exciting news to share! On July 4th I have been asked to share my testimony at the Alamodome in San Antonio as part of a National Christian youth gathering... (http://www.lcmsgathering.com/)

... In front of 25,000 people!!!!!!!!!!!!

I feel so honored and so blessed to have this opportunity to share the amazing work God has done in my life! It goes without saying that this journey of illness would never have been the plan I would have chosen for my life... But I now stand in awe at how God has used it for good, and given me a new purpose.

The theme of the conference is "Live Loved", and I will be speaking about the Love who Lived--Jesus--And how even in the midst of unspeakable pain He was with me.

I am very excited... But also a little nervous! 25,000 is a LOT of people!!! Please pray for me to have the right words to speak, and that God is glorified through my words!

Also, this past week, I was blessed to have Dr. Rainbow here in Naples Florida with me!!!

Having Dr. Rainbow here felt like a dream... We shopped, tanned, wined & dined and made sooo many incredible happy & healthy memories together, almost as if the past years were a distant memory.

I will never forget the memories I have with Dr. Rainbow... Both then & now!

Thanks for checking in!

God bless!

Xoxo Jess


"And we know that for those who love God all things work together for good, for those who are called according to his purpose." Romans 8:28



...HOW GREAT IS OUR GOD?!!

28 comments:

Anonymous said...

Hello Dearest Jessica --

Thank you for updating all of us! How happy to hear that you are doing so well & getting ready to share your journey with so many (WOW!). You are a true inspiration.

The two pictures that you posted of you & Dr. Rainbow are just amazing. Where you were and where you are now . . . there are no words. You are simply beautiful.

Please remember that you are thought of and prayed for daily. Hearing of your progress still makes our hearts skip a beat . . . and we look forward to plenty of more skips in the future! Keep us posted. :-)

Warmest wishes to you and your beautiful family!

With love,
The Klatts

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Rosemary & John said...

Dear Jess,

We are so thrilled for you! God is speaking through your lips. Do not fear; He will calm you and guide you at the conference. How we wish we could be there to see and hear you speak but I have no doubt your Mom will document every nano second of this upcoming event!

Also, that picture of you & Dr. Rainbow is truly miraculous! Wow, how far you have come. It's as though you have traveled through time at the speed of light, yet it was less than 3 years ago, you lay on deaths doorstep. God has touched you in so many ways. We pray for your continued recovery and our reunion in health.

All our love,

Rosemary & John xoxo

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Fallon Mirsky said...

Hi. I know you don't know me, but I am hoping that we can get to know each other. I am hoping that you will take the chance and read this email and hoping that you will be able to respond to it because I am really looking for help. Knowing that you have gone through the exact thing that I am going through gives me hope that there is light at the end of the tunnel, but I am not sure how to actually get there. That is why I am writing to you… in hopes that you can possibly help me because without your 'help' I fear that I am not going to make it through this.

Even though you don't know me, I know a lot about you… both through your website and through Dr. Kirkpatrick. I must say that you are a very strong person and I admire all that you have gone through and overcame. I only wish I was as strong as you. I am also a patient of Dr. Kirkpatrick, and after visiting with him, he has also told me plenty about you because he has compared me plenty to you. In fact, he has called me your "twin" in many aspects because I am one of the worst cases he has ever seen. I have been all throughout the country in search of help, but no one has been able to help me. I am so desperate to get well and I am in so much pain and suffering. I suffer like you know… 24 hrs a day 7 days a week. I don't a rest from this disease and I am rapidly deteriorating. Just like you, I didn't just suffer from the 'pain' of the disease, but I have so many other complications from the disease. I am very frail and my entire body is shutting down. The disease has progressed to go from my left foot (I had foot surgery) to throughout my entire body and I am now even weighing only in the 60s. Without help soon, the doctors fear I am going to die. Even though death does seem kind of a 'gift' in the weirdest sense because at least I will be out of my suffering, I really don't want to die because I have too much to live for. I have so many aspirations and stuff that I want to do that I haven't been able to accomplish because I have been robbed of so much because of this horrendous disease. I still want to get better and become a doctor like I always aspired to be so that I can help others.

Fallon Mirsky said...

Currently, I am 31 years old and I live in New York. I desperately need help and have tried numerous and various treatments to try to get myself well, but nothing has ever worked. I have tried countless treatments including blocks, physical therapy, stimulators, medications, etc. I even had sympathectomies and the ketamine infusions that only last a few hours in New York, However, nothing has worked and it is determined that the only thing that will possibly work is the radical ketamine coma out-of-the- country or at least the huge intensive ketamine infusion with Dr. Kirkpatrick. Even though Dr. Kirkpatrick isn't very thrilled with giving me the infusion because he doesn't know if it will work and because I am so 'high risk,' he is willing to try it because it is my only chance and because I have no other options because I can't really get out of the country since HIS studies out of the country have been suspended. It has been my dream though to go out of the country to have that radical coma like you had because I really feel that that is the only thing that can possibly get me well. I know how dangerous and risky that coma really is, but I am more scared about living like this. It is "Hell"… like you know.

I could really use your help, and I really hope that I can hear back from you. There is so many ways that I can really use your 'help.' Not only can I use the support because I feel like everyone has walked out on me and such, but I really need help in the financial area. I am not asking you for money, but I am asking you how you went and afforded your treatment. Being sick for so many years, we have bills that are out of this world. As a result, we can no longer afford treatment, especially the out-of-the country coma or even the infusion with Dr. Kirkpatrick because it is so costly. It is such a shame that my life hangs in the balance and it is because of money that I can't get well. I was wondering how you managed to receive the care that you received knowing how expensive that it was. I am sure that you probably didn't have all the funds that it cost, so I was wondering how you managed to receive the donations and such. I have tried so many different ways, but nothing has been successful. I am running out of time and unfortunately, I am out of suggestions. I have tried making a website, writing blogs, writing to the media, hanging flyers, writing to famous people, asking through Facebook, etc. but nothing really has come about. I come from a very small family and I really have no friends because they have walked out on me (hence no real support system). I also don't know anyone and in this world… it isn't what you know… it is who you know and therefore… I am kind of out of luck. So… if you can please manage to write back to me or contact me via text or phone… I would really appreciate it.

There is so much that I would really like to speak to you with. I have a website at www.FallonMirsky.wordpress.com if you want to check it out. I would really appreciate it if you can please write back to me or contact me as soon as possible because time is of the essence. I am really hoping that you can give me some help… any help whatsoever would be much appreciated!! I would appreciate any help you can give me… whether it is advice how to raise money, how to get to Mexico despite Dr. Kirkpatrick not doing the study there anymore, or even just a friendship and a support mechanism. Please help me because I am reaching out for help. I really don't have time on my side and I am desperate.

Fallon Mirsky said...

I really admire you and I constantly pray that you will rise above all the obstacles that may lie ahead.
Please feel free to contact me at Spunkyfal@aol.com or at my cell phone at (516) 281-5747. I really hope you will answer me as soon as possible. I am leaving for the Mayo Clinic in about a week or so… hoping they can help me because the disease has shut down my stomach and they already said I need a mutlivisceral transplant (stomach, small and large intestine, liver, pancreas) but I think that if I could get to Mexico and have the intensive and radical ketamine coma… I might be better off. I also suffer from osteonecrosis and not only do I have lesions that aren't healing, but parts of my bones in my mouth (like my jawbone) are protruding through in my mouth. They are waiting for it to break off because they are dying. My whole body is shutting down. I also have a pituitary brain tumor and it is getting bigger because it is getting 'fed' by the meds that I am on. I am on so many medications that I literally eat medicine for breakfast, lunch, and dinner, and for snacks. My bloods are very low and I am at the point that I can have a arrhythmia or cardiac arrest at any moment. Yet, they can't give me TPN or IV really because of the RSD. Everything stirs up my autonomic dysfunction and RSD and it is so horrible. I really honestly don't know how much longer I can hang on. PLEASE HELP.

Love, Fallon

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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!