June/July 2013
Photography of Sonya Versluys
Sonya Versluys...My Story
How do I tell you about my Lyme Disease?
How do I tell you about the neurological symptoms that had doctors believing I had Multiple Sclerosis, Parkinson's Disease or perhaps a brain tumor? How do I explain the severe back pain that had an Orthopedic surgeon sending me for a lumbar puncture to inject dye into my spinal fluid for a myelogram? The knee specialist injecting cortisone shots under my swollen knee caps to hopefully mitigate the pain there? My general doctor telling me that I must be gaining weight because I didn’t exercise enough?
I already had a 2nd degree black belt in taekwondo, and I ran every day. I was...confused.
The ENT said I’d had a chronic sinus infection possibly for years when he put a endoscopy up my nose. The Gastroenterologist said I had IBS when he performed both an upper endoscopy and a colonoscopy and found nothing else. My General doctor said I had Fibromyalgia, Chronic Fatigue Syndrome and Addison’s Disease. My Endocrinologist suspected I had Cushing’s Disease. When my feet started to hurt I was told it must be my running shoes. When the pain in my fingers prevented me from playing the piano, I just needed to de-stress. When I couldn’t remember how to play the piano, I was just doing too much. When I passed out in my car, in my house, on the street, or felt vertigo every few minutes, and had trouble breathing? When I found myself in the ER, shivering on a hot day, and my blood pressure dropping every time I stood up, and nobody could find anything wrong with me? How do I explain those things to you?
What about when my muscles started to spasm uncontrollably, when my neck stiffened, when I couldn’t remember how to cook, or I forgot the names of my children and couldn’t remember how to get to a friend’s house, or had difficulty finding my way around my own house, forgetting birthdays and important events and gradually all the while finding it difficult to maintain my balance and coordination, developing twitches and tics and finding it difficult to talk? The words were there, or sometimes they weren’t, but then my mouth tripped over them and I couldn’t get them out. It was like trying to push the words out, but they wouldn’t come, and when they did come they slurred a little as if I’d been indulging in a morning cocktail. How do I explain the heart palpitations when sitting perfectly still and the EKG comes back normal?
How do I tell you about the neurological symptoms that had doctors believing I had Multiple Sclerosis, Parkinson's Disease or perhaps a brain tumor? How do I explain the severe back pain that had an Orthopedic surgeon sending me for a lumbar puncture to inject dye into my spinal fluid for a myelogram? The knee specialist injecting cortisone shots under my swollen knee caps to hopefully mitigate the pain there? My general doctor telling me that I must be gaining weight because I didn’t exercise enough?
I already had a 2nd degree black belt in taekwondo, and I ran every day. I was...confused.
The ENT said I’d had a chronic sinus infection possibly for years when he put a endoscopy up my nose. The Gastroenterologist said I had IBS when he performed both an upper endoscopy and a colonoscopy and found nothing else. My General doctor said I had Fibromyalgia, Chronic Fatigue Syndrome and Addison’s Disease. My Endocrinologist suspected I had Cushing’s Disease. When my feet started to hurt I was told it must be my running shoes. When the pain in my fingers prevented me from playing the piano, I just needed to de-stress. When I couldn’t remember how to play the piano, I was just doing too much. When I passed out in my car, in my house, on the street, or felt vertigo every few minutes, and had trouble breathing? When I found myself in the ER, shivering on a hot day, and my blood pressure dropping every time I stood up, and nobody could find anything wrong with me? How do I explain those things to you?
What about when my muscles started to spasm uncontrollably, when my neck stiffened, when I couldn’t remember how to cook, or I forgot the names of my children and couldn’t remember how to get to a friend’s house, or had difficulty finding my way around my own house, forgetting birthdays and important events and gradually all the while finding it difficult to maintain my balance and coordination, developing twitches and tics and finding it difficult to talk? The words were there, or sometimes they weren’t, but then my mouth tripped over them and I couldn’t get them out. It was like trying to push the words out, but they wouldn’t come, and when they did come they slurred a little as if I’d been indulging in a morning cocktail. How do I explain the heart palpitations when sitting perfectly still and the EKG comes back normal?
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How do I explain suddenly becoming dyslexic and being a writer but being unable to write? Being a photographer but being unable to use my camera because my fingers hurt and they just wanted to curl in on themselves like some misshapen claws? Having the bank call because my signature doesn’t match up on a check, or because I’ve inverted the numbers? Needing a friend to read a menu for me? Simply not being capable of making a decision because the thought process on how to do so was lost? When I did so much before, how do I explain being unable to do anything now?
Every doctor I saw came to the same conclusion: psychosomatic...except for the thyroid disease, celiac disease, autoimmune adrenal antibodies, vitamin deficiencies and hyperglycemia. On paper, those numbers made sense. They couldn't lie. Maybe it was a brain tumor, it was speculated. They took a look at my pituitary gland and told me not to worry if they found a tumor they could pull it out through my nose. There was no tumor. |
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I agreed to see the in-house psychiatrist if they would agree to keep looking for answers. The prognosis? I had a profound ability to disassociate myself from pain. This, she decided, was a problem, and I was asked to keep a pain diary. I didn’t like the pain diary. It forced me to recognize just how debilitated I was. I had to think about pain now, and the things I was forcing an ignored tolerance on were unbearable. We had great conversations though. She told me to read Victor Frankl’s book, “Man’s Search For Meaning.” While I know I can’t compare to his own personal nightmare, this is where her mind went from our discussions. I wasn’t crazy, but I was looking for meaning amidst a horror. I'll never forget the day she abruptly stood up mid-session and went in search of my general doctor. I heard them arguing outside the door. She told them to pay attention and keep looking.
I was lucky enough to have the insight of a Naturapathic Doctor who was well versed in thinking outside of the box. Have you ever been bitten by a tick she asked me, as she went through a long list of possibilities while giving me a vitamin infusion. Why yes, I replied, when I was 19 years old (I’m now 38), I remember it well. I had a nurse remove it because it was buried so deep in behind my ear. The nurse at the time had told me not to worry about it, as it wasn’t a dangerous tick. At nineteen, I was invincible and no one knew about Lyme Disease back then. They still don't. I’m going to test you for Lyme Disease my ND told me. Ok, I thought, what haven’t I been tested for so far? Insurance won’t cover the test you need, she said, it will cost at least $500. Let’s do it, I say, I’m grasping at straws here.
My test came back positive by both lab and CDC standards. I had Lyme Disease. Great, I thought! Now we know. We can get rid of it, right? She suggested I do some research. I did.
I learned that it wasn’t as easy to find someone to help me as I thought it would be. I discovered that not only were people debilitated and dying from Lyme Disease, but that their doctors were afraid or refusing to take on patients. I learned that people were traveling all over the country to find someone, anyone, willing to help them get better. I learned that insurance companies would not recognize the necessity for treatment and that doctors had to be found on secret lists maintained by forums of online Lyme patients, and secretly distributed. I learned that I needed an LLMD - a Lyme Literate Medical Doctor. And the time it took me to find one, only made me sicker and sicker. It was now becoming a desperate situation.
I was lucky enough to have the insight of a Naturapathic Doctor who was well versed in thinking outside of the box. Have you ever been bitten by a tick she asked me, as she went through a long list of possibilities while giving me a vitamin infusion. Why yes, I replied, when I was 19 years old (I’m now 38), I remember it well. I had a nurse remove it because it was buried so deep in behind my ear. The nurse at the time had told me not to worry about it, as it wasn’t a dangerous tick. At nineteen, I was invincible and no one knew about Lyme Disease back then. They still don't. I’m going to test you for Lyme Disease my ND told me. Ok, I thought, what haven’t I been tested for so far? Insurance won’t cover the test you need, she said, it will cost at least $500. Let’s do it, I say, I’m grasping at straws here.
My test came back positive by both lab and CDC standards. I had Lyme Disease. Great, I thought! Now we know. We can get rid of it, right? She suggested I do some research. I did.
I learned that it wasn’t as easy to find someone to help me as I thought it would be. I discovered that not only were people debilitated and dying from Lyme Disease, but that their doctors were afraid or refusing to take on patients. I learned that people were traveling all over the country to find someone, anyone, willing to help them get better. I learned that insurance companies would not recognize the necessity for treatment and that doctors had to be found on secret lists maintained by forums of online Lyme patients, and secretly distributed. I learned that I needed an LLMD - a Lyme Literate Medical Doctor. And the time it took me to find one, only made me sicker and sicker. It was now becoming a desperate situation.
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I finally landed in the hands of a very caring LLMD, Dr Chitra Bhakta of OCIMC. I remember signing that I agreed to treat my Lyme disease and co-infections with IV antibiotics until my symptoms disappeared. Insurance was only going to cover 28 days for neuroborreliosis. That’s what I had. Neuroborreliosis. That's when the Borerelia Borgdorferi bacteria (Lyme Bacteria) has crossed the blood brain barrier and was wreaking havoc in the central nervous system, brain and heart. The CDC, and insurance still recognized that as a cure for something that they knew nothing about. Twenty eight days for 20 years of disease. I didn’t care about the CDC or insurance. I needed my life back.
My intake appointment lasted 3 hours. It was difficult to sit. I was in pain. It was difficult to answer questions, because I couldn’t remember anything. I had been living in a state of confusion and constant pain for a long time. Dr Bhakta had me stand up and close my eyes. I swayed. I opened them and grasped the table before I fell. Did I ever get rashes? Yes, sometimes, weirdly for no reason, all up my arms. My feet felt like they were buzzing, like something was vibrating inside of them and in the morning it felt like all the bones in them were broken. Sometimes it felt as though something was crawling all over my skin, and I was breathing but I was starving for air. I was afraid to drive my car, for the vertigo that came and went at no specific time, or the sudden drops in blood pressure that would make me pass out. |
My gut, it was deemed, would never tolerate oral antibiotics. Even so, we needed to get that in shape before beginning the IV. I was put on a protocol to improve my gut slowly. We introduced each new supplement after a few days, increasing the dose of each supplement in the same manner. If something was going to be a problem, we would know which supplement to blame.
We took more blood to test for co-infections (I had a few), the level of inflammation in my body, my “killing power”, and a lot other bits and pieces that detailed my health and put my story together. It was the first time that things started to make sense. We also tested my immunity. I am immune deficient. The bacteria had attacked my immune system to the point where I do not have the necessary IgG antibodies to fight anything. Where the average healthy person is capable of keeping a lid on all of the nasty bacteria that we all have, I do not. I needed IgG blood infusions once a month.
Within a few weeks I was sent to a surgeon to have a central line inserted. The catheter entered at my neck and went left to sit just outside of my vena cava, above my heart, and then tunneled down on the right to an exit site on my chest. Via this device, was how I was going to administer the IV medications, IVIG infusions, and the vitamins necessary to fight my battle.
Dr Bhakta coached me in giving up taekwondo and running for a time (like I could at this point anyway!), and taking up slow stretching, walking and yoga instead. She advocated for meditation and stress-free living, and fighting inflammation with a strict organic, no-amylose, no-gluten, no dairy, no soy, and a ton-of-other-forbidden-things diet. Those first few weeks were overwhelming. You take a person who can barely remember anything important and give them a new way to live? She knew enough to give me a highlighted instruction sheet, numbered in order of compliance, before she unleashed me to my own devices.
Then, very seriously, she looked at me and told me that I was going to get a lot worse before I got better. Worse? We were going to anger the bacteria, she said. Stir the pot so to speak. She was right. I spent the first four months mostly bedridden. I had medication for the pain, medication to keep me calm, and supplements to keep my digestion in order, my liver function within boundaries, and medication to make sure I slept. And everything had an order. No food for two hours after thyroid medication to be taken twice per day, but supplements always before food, with food and some after food. Biofilm eradication supplements away from all food, but eat 5-6 times a day. Food? Even the thought of it made me feel nauseous. It was a logistical nightmare.
We took more blood to test for co-infections (I had a few), the level of inflammation in my body, my “killing power”, and a lot other bits and pieces that detailed my health and put my story together. It was the first time that things started to make sense. We also tested my immunity. I am immune deficient. The bacteria had attacked my immune system to the point where I do not have the necessary IgG antibodies to fight anything. Where the average healthy person is capable of keeping a lid on all of the nasty bacteria that we all have, I do not. I needed IgG blood infusions once a month.
Within a few weeks I was sent to a surgeon to have a central line inserted. The catheter entered at my neck and went left to sit just outside of my vena cava, above my heart, and then tunneled down on the right to an exit site on my chest. Via this device, was how I was going to administer the IV medications, IVIG infusions, and the vitamins necessary to fight my battle.
Dr Bhakta coached me in giving up taekwondo and running for a time (like I could at this point anyway!), and taking up slow stretching, walking and yoga instead. She advocated for meditation and stress-free living, and fighting inflammation with a strict organic, no-amylose, no-gluten, no dairy, no soy, and a ton-of-other-forbidden-things diet. Those first few weeks were overwhelming. You take a person who can barely remember anything important and give them a new way to live? She knew enough to give me a highlighted instruction sheet, numbered in order of compliance, before she unleashed me to my own devices.
Then, very seriously, she looked at me and told me that I was going to get a lot worse before I got better. Worse? We were going to anger the bacteria, she said. Stir the pot so to speak. She was right. I spent the first four months mostly bedridden. I had medication for the pain, medication to keep me calm, and supplements to keep my digestion in order, my liver function within boundaries, and medication to make sure I slept. And everything had an order. No food for two hours after thyroid medication to be taken twice per day, but supplements always before food, with food and some after food. Biofilm eradication supplements away from all food, but eat 5-6 times a day. Food? Even the thought of it made me feel nauseous. It was a logistical nightmare.
But would I walk away from this fight? Never. Life is worth fighting for, and this is what I have to do to get mine back. I have a husband and children, and so much inside of me that needs doing. My story needs to be told. My art needs to be seen. My voice needs to be heard. I need to grow and experience life as a human being with a profound respect for the air that flows in and out of my lungs with every breath I take. So long as I can think, I can be, and if I can be, I can contribute and make a difference. I can advocate.
As an artist I am dedicated to pursuing the creativity and beauty of the world and people around us. I want people to see the world from multiple perspectives and appreciate the diversity that has been handed to us, and what an immeasurable treasure that is. I want to appreciate every breath, and every thought, and every experience I have. And I want to share it and to do that, I must get better. And finally, I’m on my way there.
As an artist I am dedicated to pursuing the creativity and beauty of the world and people around us. I want people to see the world from multiple perspectives and appreciate the diversity that has been handed to us, and what an immeasurable treasure that is. I want to appreciate every breath, and every thought, and every experience I have. And I want to share it and to do that, I must get better. And finally, I’m on my way there.
Photo Gallery
Firenz by Night
Firenz
Anticipation
Blow Away Sunset
Centuries Past
Grapes
Hill Living
Rainy Day
Wave Spotting
Wedding
Street
Turbines
View Down
Verge of Bloom |
Around the Bend
Building With Life
Contemplation
Old Lives
Cruisin
Lavender Fields
Making Friends
Steamboat
Laundry Day
Pots
Moment
Village View
Old World Charm |
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