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!


***To Post A Comment, CLICK on Comments Below***


Anonymous said...

Dear Jessica, So many things were going through my head as I read your post... Many thanks to our Great God for bringing you through the darkness to where you are today, where you can enlighten us with a thought-provoking medical explanation of RSD and Lyme. Only someone like you, who has gone through it the way you have, can ask the right questions that can lead to real breakthroughs in treatment and, hopefully someday, prevention. Your intelligence and articulation shine forth in your explanations, especially when you take complicated concepts and apply real-life examples to them and make them understandable for others (like me!) I am so thankful for how far you've come, and will continue to pray for you, your mom (hi Gina!) and your amazing family. Love always, Angel xoxoxoxo

Anonymous said...

Excellent post! Very informative! This same virus may be responsible for fibro and CFS as well. Some doctors believe these are overlapping illnesses all affecting the nervous system.

Oddly enough most pain syndromes affect more women then men (these also include MS and Lupus). It seems to affect women of child bearing age then the numbers drop in women AFTER menopause.

This is far bigger than we realize. Much research is needed and is being done.

God is greater and we trust we will help us find the way.

With love and prayers,
The Turners

Rosemary and John said...

Dear Jessica,

Thank you. We ask that God bless you and keep you strong in mind, body and spirit. You amaze us with your attitude and thirst for knowledge. It is only through the asking of these questions that we can begin to seek answers. You have taught your doctors more than any book or lecture. Thank you for being a voice for those who cannot find the words to speak for themselves. You are clearly here for a reason; this much we know.

Much love,

Rosemary and John

Fern said...

Right on! There are too many overlaps with the immune deficiencies diseases. Just watched a program on YouTube where the doctor was explaining when pain becomes a disease and how much information is still needed. As he pointed out.. we are treating the symptoms but not the underlying problem. I have noticed that many who end up with one disease, often begin to collect them. Be a good research study... it is coming for sure!

Anonymous said...

Central sensitivity syndromes

Muhammad B. Yunus, MD, a pioneer FM researcher, believes that there is a large group of illnesses with overlapping features that he calls "Central Sensitivity Syndromes." What they all have in common is a sensitization of the central nervous system. Under this broad CSS category, he lists disorders such as FM, CFS, migraines, irritable bowel syndrome, TMJ, multiple chemical sensitivities, restless legs syndrome, myofascial pain syndrome, and others. All of these illnesses have some symptoms that overlap one another.

Anonymous said...

What a wonderful testament to your parents, doctors, medicines, etc.; all of whom are under the skillful guidance of the greatest healer of all - our Lord Jesus.

I am thrilled and inspired by your progress.

Anonymous said...

Isaiah 26:3

3 You will keep in perfect peace 
   him whose mind is steadfast, 
   because he trusts in you.

Anonymous said...

My 10 year old son was just diagnosed with lyme disease and Crsp in his foot and ankle. So far nothing has touched the pain and physical therapy has been so hard. I am glad you are doing better and found the information you posted very informative. Thank you!

Sabrina Craig said...
This comment has been removed by the author.
Sabrina Craig said...

Lyme is certainly very complex. It’s good to know that you’ve become ‘sort of an expert’ towards your condition. Being well-informed about this disease is the best armor you could use against this illness. In most cases, the lack of awareness on both ends can cause Lyme patients to be misdiagnosed or diagnosed too late. Thanks for sharing these information, and I wish you all the best!

Sabrina Craig @ Law Firm of Joseph M. Lichtenstein P.C.

Gracie Bagosy-Young said...

Thank you for sharing! I have had CRPS fir almost 7 years. I agree, we are the experts! No one else is more invested in our own bodies than we are! I learned about a year ago that I also have Lyme. I have tried to trace it. It looks like it may have been due to a spider bite over 10 years ago. I went to the ER, but was belittled and dismissed. Hindsight! I Advocate for hundreds of thousands of people all over the world. The number of people that have both CRPS and Lyme seem too large to be coincidental. I'm not a doctor. But all of my doctors seem to agree that it was the uh nnderlying lyme that encouraged my body to develop the CRPS after surgery that day.
It's something to think about.

Nancy Smith said...

Fascinating discussion about Lyme disease and CRPS. I do not have Lyme that I am aware of but suffer from CRPS. This all truly is a mystery that needs unraveling and a CURE! Stay strong everyone and let's stay on a mission for research and cures.

Ashley Basquill said...

Hi- my nine year old son is currently experiencing the same thing. Severe pain in his foot and nothing seems to be working. He's been diagnosed with CRSP as well (investigating Lyme). Please tell me something eventually worked for the pain?!?! Any insight you have would be greatly appreciated!!

Jessica Mendes said...

I have both Lyme Disease and CRPS, and life has been torturous. This is the first time I have found someone who has both. I am wondering, you did not say how the IVIG treatment worked? Was it effective? I have found that anything I take to kill my Lyme infections (I have many) makes my CRPS worse, and when I do what I know to treat CRPS it makes my Lyme worse. At the end of the day it doesn't matter if they are the same thing or connected (for me they obviously are), I just need to find something or my days are numbered. Anyway. You sound like someone I would like to speak to and wonder if you are open to that. I have a web site called Pain Maps (dot com) with tons of research for CRPS and a blog and other stuff, a radio series on pain, lots of stuff there. Please contact me at sensorybeing [at] gmail [dot] com if you are open to talking. Thanks!

Anonymous said...

One big difference. RSD is 'crippling' pain.

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!