My Lyme Story
Most people with Lyme Disease will describe the subtle creeping of symptoms over months, years, or even decades until they realized something was wrong or until they were finally diagnosed.
My Lyme story is atypical, in that I went from very healthy and active to very sick, almost in a matter of days.
In August of 2013, I decided to clear out an area of my yard that had been untouched for the 7 previous years we lived in our house. I spent about a week pulling weeds and overgrowth from a shady, treed and rocky area, and because I didn't know what poison ivy looked like, I wound up with a very severe rash on both of my arms. A nuisance, but tolerable.
After 2 weeks of scratching, the rash started appearing in other places. I had taken the summer off to be with my children and was scheduled to go back to work the following week. I wasn't too excited to start working again with this ugly and uncomfortable rash, so I got a short course of Prednisone to help clear it up. The doctor told me to take the first dose with food, so I ate a salad with shrimp on it .
About 20 minutes later I went into anaphylaxis. I recognized what was happening and was able to call 911 in time and luckily they were very fast. The paramedics spent 45 minutes saving my life on my front doorstep, and I was given even more steroids at the emergency room to stop the allergic reaction. On top of that I was advised to finish up my taper pack of Prednisone. Note: steroids suppress your immune system.
A blood test revealed I had developed a shellfish allergy, a food I had eaten all my life. It seemed like an unfortunate turn of events, to have the poison ivy and then the life threatening allergic reaction at the same time. I had no idea how bad things were about to get.
Over that next week I felt unwell but chalked it up to the Prednisone. By then it was Labor Day weekend. My husband was working out of the country during all this so I took my children to the National Zoo and did some more gardening and tried to plow through not feeling right. On Monday of the holiday weekend, also the day before my children were to start the new school year, I became much sicker and thought I was having a heart attack. A friend took me to the ER where I found out my blood pressure was really high (normally it is low) and I was having tachycardia ( a high heart rate.) The ER doctor told me I was dehydrated, gave me a bag of saline and sent me home. I have not felt right since.
So began my journey. I developed more and more symptoms and felt poorly all of the time. My heart raced and pounded out of my chest even when I was sleeping, I was severely lightheaded, fatigued, shaky, I could not sleep at night and had a feeling of malaise at all times. More symptoms began and kept changing, all over my body. My blood sugar fluctuated with highs and lows despite a careful diet, I started losing weight, lost my appetite, had a constant tummy ache, my skin was flushing and I got hives, I started feeling anxious and sad and over emotional. It was as if my entire body was completely out of whack in every way. Could it be peri-menapause?? Was it my hormones or my cortisol or my thyroid or my adrenals?? I spent all of my time researching my symptoms but they were all over the place.
I went from doctor to doctor trying to find an answer. Cardiologists, Endocrinologists, Neurologists, Allergists, multiple Internists, test after test after test, vials and vials of blood, all coming back "NORMAL!" I even had 2 Western blots, knowing I live in a highly endemic area for Lyme disease. Herds of deer are in my yard daily, I gardened in this same yard and have 2 dogs who at the time slept with us. Not to mention all of the time outdoors with my children for sports and nature walks. Both Western blots were negative and since I had none of the symptoms listed on the CDC page for Lyme disease....no headache, no neck ache, no joint pain, no fever, no known tick bite, no bulls eye rash.....I didn't think of it again. I have since learned it is a law in Virginia for doctors to notify patients that a negative does not mean you do not have Lyme, and that it should always be a clinical diagnosis. No doctor gave me this important information.
Multiple friends suggested I had Lyme disease. I tried acupuncture hoping it would set me right and the acupuncturist within 5 minutes of talking to me told me he thought I had Lyme disease. No, I insisted. I was tested, twice. I was negative, and at the time I actually believed the blood test was accurate. Plus I didn't have the "right" symptoms that mainstream medical websites told me I would have if I was exposed to Lyme disease. One friend had me watch Under Our Skin, the documentary about Lyme. (Highly recommend this movie if you have not seen it, and there is a follow up to it out now called Emergence.) Fascinating, but it further solidified my belief I didn't have Lyme since none of the people in the film had my same collection of symptoms.
I practically had to be hit with a 2x4 by my friends to consider it was Lyme all along. I learned the Western blot is about as accurate as a coin toss and does not test for 2 very Lyme specific bands. That you need to pass a "pre-requisite" ELIZA test before you may even have a Western blot performed and then you have to have 5 positive bands for it to be considered positive for Lyme disease. Most people have no idea they were bitten by a tick. Many never develop the rash. There are over 300 symptoms of Lyme and it can imitate many other diseases, including but not limited to fibromyalgia, chronic fatigue syndrome, MS, ALS, Alzheimers, Parkinsons, psychiatric disorders and depression, arthritis, ADHD, autism, lupus, and "the aches and pains of growing older." Most doctors have no training in Lyme and rely on the very outdated CDC and IDSA guidelines, so it is often missed.
I finally got myself to a local and highly recommended integrative medicine doctor. I didn't know it at the time but she is also an LLMD- meaning a Lyme Literate Medical Doctor. Our first appointment was for one hour. Within that hour she recommended I get tested for Lyme, which she thought I may have, through IgeneX lab in California. They are the gold standard for Lyme testing and most doctors have never heard of them, or if they have, they are suspect of the results. My test came back unquestionably positive, meeting the CDC criteria.
I am still angry and sad and disappointed that I spent over 5 months going to doctors begging for an answer when it took one doctor who is trained to recognize Lyme less than 60 minutes to help me. For many with undiagnosed Lyme, it takes much longer, even years or decades to figure it out. How different my life would have been if I would have been correctly diagnosed at the beginning- possibly when I was first infected- and a short, inexpensive course of antibiotics may have been all I needed. I remember how I was dismissed by the first practitioner I went to. She ran blood work and referred me to a cardiologist. When nothing was revealed by either, she looked me point blank and said," I don't know what to do with you." She was done with me.
I was told by all of the other doctors after her I was perfectly healthy and that it was probably stress- even though the only thing in my life that was stressful was the fact I knew I was very sick and nobody was taking it seriously because all of my lab work was always in range.
The thing is with Lyme, if you see the tick, or get the rash, and you get it treated right away with a therapeutic dose of antibiotics, you are probably good. But when ticks are the size of a poppy seed and they hide in your parts or in your hair and they anesthetize you when they bite you so you never feel it and you never get a rash and doctors - even in highly Lyme endemic areas - are not well informed about Lyme, you can get very, very sick. By the time you know something is wrong you have lost that precious window to effectively treat it. The Lyme bacteria leaves the bloodstream (hence why the blood test is often unreliable) and corkscrews itself deep into your body where it can hide from both your immune system and antibiotics. Then it forms a sticky substance over itself called a biofilm, making it even more difficult to ever get rid of it.
Being bit by a tick is like being stuck with a dirty needle that you don't know what's in it, so you don't really know how to treat it. Ticks carry more than just Lyme disease. There are a whole host of different co-infections as well as viruses and who knows what else, that they regurgitate into your bloodstream. As if that isn't tricky enough, there are about 100 strains of Lyme disease in the US and about 300 world wide. Oh and by the way the traditional Western blot tests for....ready....one strain. The Western blot was developed over 25 years ago, for statistical purposes, not diagnostic, yet it has never been updated.
Since my diagnosis on February 1, 2014 I have been in continual treatment with oral antibiotics, months of IV antibiotics that I administered myself through a port in my arm leading to my heart, more natural herbal and homeopathic remedies, a very long list of supplement, Reiki, earthing and essential oils. I wish I could write that I am better, and that I was in remission. Unfortunately as is the case with tens of thousands of people worldwide (maybe more), I have only become sicker with treatment. Lyme is very hard to eradicate. It can hide, it can form a biofilm over itself to unleash on you at a later time, it can go into cyst form, and when it does die it releases toxins into your body that can make you even sicker than when it was alive (it is called herxing which is slang for a Herxheimer reaction, and is just as bad as the name sounds). If you have any of the many genetic mutations (like I do) that hinders your ability to detox well, it makes everything even harder. Same goes for mold or heavy metals (mercury or amalgam fillings for example,) if you have those stored up, that is another issue to address. Add in that you may not know what other co infections you are dealing with, and that Lyme can cause an autoimmune response in your body and reactivate dormant viruses you already had, and you are dealing with a very complex illness.
The first month of treatment some of my initial symptoms went away for good but completely new ones appeared. I started getting the moving arthritis and thought, where were you when I needed you, I might have realized it was Lyme sooner! Some of those have resolved, but now I am dealing with debilitating leg weakness and nerve pains. I have lost my ability to stand or walk for long. I use a cane, and when I am having a really bad day, a walker or a wheelchair. Some days I cannot drive. I have numbness, burning, tingling and back pain, and I hope that this peripheral nervous system damage can be reversed. Right now my Lyme is masquerading like MS ( 2 different neurologists have cleared me through MRIs and a lumbar puncture as not having MS, both believe it is entirely tick born for me, and by the way, it is widely believed many with MS actually have Lyme disease at the root.) To say Lyme disease has drastically altered my life is an understatement and there doesn't seem to be an end in sight. Some days I am functional and some days I am not, so far I haven't had a day where I have felt as good as I did before becoming ill. I would have preferred to have made this website AFTER I had recovered, because everyone likes to read a happy ending, but treating Lyme is like peeling an onion, with many complicated layers, and I know it will take time before my body recovers from this.
I recently read a great list, written by another "Lyme warrior," as we are called. It was a list of things she learned from late stage Lyme. One really spoke to me. To paraphrase, she said that asking "Why Me?" just proves to the Universe that you haven't learned the answer yet, and nothing goes away until it teaches us what we need to know. I guess I will be struggling with Lyme for a little while longer because I admit I have not learned this yet. I had already had my share of struggle in my young lifetime. I had another very serious illness as a teenager where I slowly (mostly) recovered from waist down paralysis (now my doctors think this may have been Lyme disease at work back when I was 16 - tick paralysis- and living in a different highly endemic Lyme area of the country) and then when I was pregnant with my first child, my seemingly very healthy first husband died suddenly of a massive heart attack. So I already knew REALLY well how important health is and what to assign importance to in my life. I didn't think I needed more lessons, but my epic battle with Lyme disease is telling me otherwise. The only good that has come, and the only "reason" I can see, is I had the rest of my family tested and found out 3/4 of us had Lyme. My hope is my suffering from this disease will now have headed off any future suffering for my children, since we were given the opportunity to know they were infected before they fell ill from this disease as well.
The most genuine way I can express my gratitude to my dear friends who helped me toward the right diagnosis is to pay that forward. This site is created with that purpose. I have become a walking and talking Lyme-o-pedia of knowledge and resources which I share freely here ( and on my Twitter and Facebook pages!) to raise awareness. What happened to me is not unusual, and keeps happening, so let's all help each other by getting the word out what Lyme really is - a plague that is growing world wide but that most doctors, insurance companies and governments refuse to acknowledge.
My Lyme story is atypical, in that I went from very healthy and active to very sick, almost in a matter of days.
In August of 2013, I decided to clear out an area of my yard that had been untouched for the 7 previous years we lived in our house. I spent about a week pulling weeds and overgrowth from a shady, treed and rocky area, and because I didn't know what poison ivy looked like, I wound up with a very severe rash on both of my arms. A nuisance, but tolerable.
After 2 weeks of scratching, the rash started appearing in other places. I had taken the summer off to be with my children and was scheduled to go back to work the following week. I wasn't too excited to start working again with this ugly and uncomfortable rash, so I got a short course of Prednisone to help clear it up. The doctor told me to take the first dose with food, so I ate a salad with shrimp on it .
About 20 minutes later I went into anaphylaxis. I recognized what was happening and was able to call 911 in time and luckily they were very fast. The paramedics spent 45 minutes saving my life on my front doorstep, and I was given even more steroids at the emergency room to stop the allergic reaction. On top of that I was advised to finish up my taper pack of Prednisone. Note: steroids suppress your immune system.
A blood test revealed I had developed a shellfish allergy, a food I had eaten all my life. It seemed like an unfortunate turn of events, to have the poison ivy and then the life threatening allergic reaction at the same time. I had no idea how bad things were about to get.
Over that next week I felt unwell but chalked it up to the Prednisone. By then it was Labor Day weekend. My husband was working out of the country during all this so I took my children to the National Zoo and did some more gardening and tried to plow through not feeling right. On Monday of the holiday weekend, also the day before my children were to start the new school year, I became much sicker and thought I was having a heart attack. A friend took me to the ER where I found out my blood pressure was really high (normally it is low) and I was having tachycardia ( a high heart rate.) The ER doctor told me I was dehydrated, gave me a bag of saline and sent me home. I have not felt right since.
So began my journey. I developed more and more symptoms and felt poorly all of the time. My heart raced and pounded out of my chest even when I was sleeping, I was severely lightheaded, fatigued, shaky, I could not sleep at night and had a feeling of malaise at all times. More symptoms began and kept changing, all over my body. My blood sugar fluctuated with highs and lows despite a careful diet, I started losing weight, lost my appetite, had a constant tummy ache, my skin was flushing and I got hives, I started feeling anxious and sad and over emotional. It was as if my entire body was completely out of whack in every way. Could it be peri-menapause?? Was it my hormones or my cortisol or my thyroid or my adrenals?? I spent all of my time researching my symptoms but they were all over the place.
I went from doctor to doctor trying to find an answer. Cardiologists, Endocrinologists, Neurologists, Allergists, multiple Internists, test after test after test, vials and vials of blood, all coming back "NORMAL!" I even had 2 Western blots, knowing I live in a highly endemic area for Lyme disease. Herds of deer are in my yard daily, I gardened in this same yard and have 2 dogs who at the time slept with us. Not to mention all of the time outdoors with my children for sports and nature walks. Both Western blots were negative and since I had none of the symptoms listed on the CDC page for Lyme disease....no headache, no neck ache, no joint pain, no fever, no known tick bite, no bulls eye rash.....I didn't think of it again. I have since learned it is a law in Virginia for doctors to notify patients that a negative does not mean you do not have Lyme, and that it should always be a clinical diagnosis. No doctor gave me this important information.
Multiple friends suggested I had Lyme disease. I tried acupuncture hoping it would set me right and the acupuncturist within 5 minutes of talking to me told me he thought I had Lyme disease. No, I insisted. I was tested, twice. I was negative, and at the time I actually believed the blood test was accurate. Plus I didn't have the "right" symptoms that mainstream medical websites told me I would have if I was exposed to Lyme disease. One friend had me watch Under Our Skin, the documentary about Lyme. (Highly recommend this movie if you have not seen it, and there is a follow up to it out now called Emergence.) Fascinating, but it further solidified my belief I didn't have Lyme since none of the people in the film had my same collection of symptoms.
I practically had to be hit with a 2x4 by my friends to consider it was Lyme all along. I learned the Western blot is about as accurate as a coin toss and does not test for 2 very Lyme specific bands. That you need to pass a "pre-requisite" ELIZA test before you may even have a Western blot performed and then you have to have 5 positive bands for it to be considered positive for Lyme disease. Most people have no idea they were bitten by a tick. Many never develop the rash. There are over 300 symptoms of Lyme and it can imitate many other diseases, including but not limited to fibromyalgia, chronic fatigue syndrome, MS, ALS, Alzheimers, Parkinsons, psychiatric disorders and depression, arthritis, ADHD, autism, lupus, and "the aches and pains of growing older." Most doctors have no training in Lyme and rely on the very outdated CDC and IDSA guidelines, so it is often missed.
I finally got myself to a local and highly recommended integrative medicine doctor. I didn't know it at the time but she is also an LLMD- meaning a Lyme Literate Medical Doctor. Our first appointment was for one hour. Within that hour she recommended I get tested for Lyme, which she thought I may have, through IgeneX lab in California. They are the gold standard for Lyme testing and most doctors have never heard of them, or if they have, they are suspect of the results. My test came back unquestionably positive, meeting the CDC criteria.
I am still angry and sad and disappointed that I spent over 5 months going to doctors begging for an answer when it took one doctor who is trained to recognize Lyme less than 60 minutes to help me. For many with undiagnosed Lyme, it takes much longer, even years or decades to figure it out. How different my life would have been if I would have been correctly diagnosed at the beginning- possibly when I was first infected- and a short, inexpensive course of antibiotics may have been all I needed. I remember how I was dismissed by the first practitioner I went to. She ran blood work and referred me to a cardiologist. When nothing was revealed by either, she looked me point blank and said," I don't know what to do with you." She was done with me.
I was told by all of the other doctors after her I was perfectly healthy and that it was probably stress- even though the only thing in my life that was stressful was the fact I knew I was very sick and nobody was taking it seriously because all of my lab work was always in range.
The thing is with Lyme, if you see the tick, or get the rash, and you get it treated right away with a therapeutic dose of antibiotics, you are probably good. But when ticks are the size of a poppy seed and they hide in your parts or in your hair and they anesthetize you when they bite you so you never feel it and you never get a rash and doctors - even in highly Lyme endemic areas - are not well informed about Lyme, you can get very, very sick. By the time you know something is wrong you have lost that precious window to effectively treat it. The Lyme bacteria leaves the bloodstream (hence why the blood test is often unreliable) and corkscrews itself deep into your body where it can hide from both your immune system and antibiotics. Then it forms a sticky substance over itself called a biofilm, making it even more difficult to ever get rid of it.
Being bit by a tick is like being stuck with a dirty needle that you don't know what's in it, so you don't really know how to treat it. Ticks carry more than just Lyme disease. There are a whole host of different co-infections as well as viruses and who knows what else, that they regurgitate into your bloodstream. As if that isn't tricky enough, there are about 100 strains of Lyme disease in the US and about 300 world wide. Oh and by the way the traditional Western blot tests for....ready....one strain. The Western blot was developed over 25 years ago, for statistical purposes, not diagnostic, yet it has never been updated.
Since my diagnosis on February 1, 2014 I have been in continual treatment with oral antibiotics, months of IV antibiotics that I administered myself through a port in my arm leading to my heart, more natural herbal and homeopathic remedies, a very long list of supplement, Reiki, earthing and essential oils. I wish I could write that I am better, and that I was in remission. Unfortunately as is the case with tens of thousands of people worldwide (maybe more), I have only become sicker with treatment. Lyme is very hard to eradicate. It can hide, it can form a biofilm over itself to unleash on you at a later time, it can go into cyst form, and when it does die it releases toxins into your body that can make you even sicker than when it was alive (it is called herxing which is slang for a Herxheimer reaction, and is just as bad as the name sounds). If you have any of the many genetic mutations (like I do) that hinders your ability to detox well, it makes everything even harder. Same goes for mold or heavy metals (mercury or amalgam fillings for example,) if you have those stored up, that is another issue to address. Add in that you may not know what other co infections you are dealing with, and that Lyme can cause an autoimmune response in your body and reactivate dormant viruses you already had, and you are dealing with a very complex illness.
The first month of treatment some of my initial symptoms went away for good but completely new ones appeared. I started getting the moving arthritis and thought, where were you when I needed you, I might have realized it was Lyme sooner! Some of those have resolved, but now I am dealing with debilitating leg weakness and nerve pains. I have lost my ability to stand or walk for long. I use a cane, and when I am having a really bad day, a walker or a wheelchair. Some days I cannot drive. I have numbness, burning, tingling and back pain, and I hope that this peripheral nervous system damage can be reversed. Right now my Lyme is masquerading like MS ( 2 different neurologists have cleared me through MRIs and a lumbar puncture as not having MS, both believe it is entirely tick born for me, and by the way, it is widely believed many with MS actually have Lyme disease at the root.) To say Lyme disease has drastically altered my life is an understatement and there doesn't seem to be an end in sight. Some days I am functional and some days I am not, so far I haven't had a day where I have felt as good as I did before becoming ill. I would have preferred to have made this website AFTER I had recovered, because everyone likes to read a happy ending, but treating Lyme is like peeling an onion, with many complicated layers, and I know it will take time before my body recovers from this.
I recently read a great list, written by another "Lyme warrior," as we are called. It was a list of things she learned from late stage Lyme. One really spoke to me. To paraphrase, she said that asking "Why Me?" just proves to the Universe that you haven't learned the answer yet, and nothing goes away until it teaches us what we need to know. I guess I will be struggling with Lyme for a little while longer because I admit I have not learned this yet. I had already had my share of struggle in my young lifetime. I had another very serious illness as a teenager where I slowly (mostly) recovered from waist down paralysis (now my doctors think this may have been Lyme disease at work back when I was 16 - tick paralysis- and living in a different highly endemic Lyme area of the country) and then when I was pregnant with my first child, my seemingly very healthy first husband died suddenly of a massive heart attack. So I already knew REALLY well how important health is and what to assign importance to in my life. I didn't think I needed more lessons, but my epic battle with Lyme disease is telling me otherwise. The only good that has come, and the only "reason" I can see, is I had the rest of my family tested and found out 3/4 of us had Lyme. My hope is my suffering from this disease will now have headed off any future suffering for my children, since we were given the opportunity to know they were infected before they fell ill from this disease as well.
The most genuine way I can express my gratitude to my dear friends who helped me toward the right diagnosis is to pay that forward. This site is created with that purpose. I have become a walking and talking Lyme-o-pedia of knowledge and resources which I share freely here ( and on my Twitter and Facebook pages!) to raise awareness. What happened to me is not unusual, and keeps happening, so let's all help each other by getting the word out what Lyme really is - a plague that is growing world wide but that most doctors, insurance companies and governments refuse to acknowledge.