Healing from Lyme - Part 2
// Filed in: Lyme Disease Diagnosis|Lyme Disease Symptoms|Lyme Disease Treatment|Lyme Disease Diet|Lyme Success Story|Lyme Disease Doctor
Before receiving the correct diagnosis for Lyme and coinfections, a dermatologist had put me on Prednisone to try and control my severe skin rashes. This was a nearly fatal mistake on his part. It marked a crisis point in my illness. I also received lectures by this doctor about how I “really should stop scratching myself raw while I was sleeping.” I wasn’t sleeping, and I knew he was wrong. The skin on my body wasn’t opening up due to scratching it. It was infuriating not to be heard.
He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.
A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.
In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.
We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.
That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.
Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.
During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.
Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.
I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.
In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.
He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.
A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.
In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.
We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.
That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.
Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.
During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.
Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.
I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.
In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.
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