There are some moments you remember clearly, even though, at the time, they don't seem to be of any major importance.
For me, one of those moments took place in the late fall of 2014. I was pregnant with our youngest child. I had suffered a miscarriage earlier that same year. It was a gut-wrenching, emotional experience. I was thrilled to be pregnant again, but also wrought with anxiety, and understandably so. One year before, I had begun hand-embroidering. I found it to be relaxing, and a good way to make a small amount of money on the side. Christmas was approaching, and I was busy stitching custom ornaments from my couch. Suddenly, I noticed an ache in the joints of my hands. I thought maybe I had overdone it with the stitching, so shortly after I called it a night. I shrugged it off, but as the days went on, the pain continued.
The next time I met with my midwife, I mentioned the pain to her. I was becoming concerned, because I have never, ever had joint pain. She chalked it up to pregnancy. "You know, this IS your fourth child, your body has been through a lot. You're not getting any younger!" she said as she smiled. I was not quite convinced. After all, I was only 28 years old. Yes, I had given birth to 3 children, but I would imagine my knees hurting, not my fingers. So at the following appointment, a few months later, when the joint pain had gotten worse, I asked her to test my thyroid, and to test for Lyme disease.
I was no stranger to Lyme. I was born and raised in the small, wooded state of Rhode Island. Ticks were a part of life growing up in New England. I had been told (and people are still being told) that Lyme disease is easy to cure; catch it early and a round of antibiotics is all you need. So I never worried. When I was 15, I met someone who I described as "the hottest guy I had ever seen" (gotta love teenagers!) He was in Rhode Island living with his best friend for his senior year of high school. His family was from Idaho, although they lived in Rhode Island for several years when he was younger. We hit it off right away, and as silly as it sounds, I knew within a few months that he would be the man I married. Unfortunately, his plan was to move back home to Idaho at the end of the summer. When he left, I was devastated. I moped around like any other heartbroken teen. Soon after, I found out he was sick, and then hospitalized, 3,000 miles away. He had a very high fever, body aches, a headache and bell's palsy (a condition where the muscles on one side of your face become weak or paralyzed) The doctors had no idea what he had. They gave him a spinal tap to check for spinal meningitis, which was negative. Somehow, though I am not sure how, he was finally diagnosed with Lyme disease. We believe he caught it in Rhode Island, but didn't have symptoms until he was out West. He did a course of 28 days of antibiotics and was pronounced cured.
It ended up being that he was the man I would marry. As a matter of fact, a few days ago we celebrated 13 years of marriage. I tell you this story so that you realize how close to home Lyme hits, and yet how naive I still was about it.
When my test results came back, they were negative. I was left with a mystery. I clung to the idea that it was caused by pregnancy, and hoped it would go away. By this time, I had also developed a problem with my hip flexors, but, again, being pregnant, it was blamed on - you guessed it - pregnancy.
April 28th, 2015, my beautiful rainbow baby, Leah Grace was born. Unfortunately, my symptoms did not disappear, they did the opposite - continued to worsen. I also began to get other symptoms, such as insomnia. I would lay in bed, exhausted by being up all night to meet the demands of a newborn, but unable to fall asleep. By November, I found myself in pain nearly every day. I had a constant ache in my joints. The most often affected were my fingers, but the pain also migrated throughout my body every few seconds, from my hands, to my wrists, elbows, knees, ankles and toes. I found myself at a local primary care doctor, asking her to test for Lyme again. She told me, "I have a low-tolerance for testing" but did some blood work anyway. I soon found out I had an positive ANA and an elevated rheumatoid factor, and again, Lyme was negative. A rheumatologist would call me with an appointment. I began to research rheumatoid arthritis. I ordered fish oil capsules because I had read they would help with the inflammation. The fish oil worked like magic - I barely had any pain when I was on it. I waited, but a rheumatologist never called me, and I continued on my daily life, forgetting all about it.
In February of 2016, I joined the new local YMCA. I was ready to get into shape and back to my old self. I began having pain in my hip flexors when I would run. I bought new running shoes, but the pain persisted. Soon I would also get sharp pains in my shins and ankles. I slowed down the running but was also noticing foot pain when I would get out of bed in the morning. My toes would also feel sore, like they had been clenched tight all night. My joint pain also began to peek through again, so in March, I decided to visit a naturopath. I liked the idea of a doctor who treated the whole body, to find the root cause, rather than just treating symptoms. I went to my first appointment with high hopes. She was the first doctor that spent an hour actually listening to me. I had 23 vials of blood taken. When the results came back, I had several food sensitivities, negative ANA, elevated RF, but not much else remarkable. My CD57 was low, and my inflammation markers were high. She had me purchase some supplements, and for 3 months I had to stay off of the foods I was sensitive to - gluten, casein (milk), whey (cheese), eggs, soy, white potato, apple, banana, and tomato. When I returned we would determine if we could reintroduce some of the foods. I believe she was hoping the inflammation was caused by foods that I was sensitive to. And in the end, she wasn't entirely incorrect.
I changed my diet 100%. I was already not eating gluten, but the other foods were hard to cut out. But I did it, for 3 months. I was eating healthier than ever, and exercising 3-4 days a week. But I was feeling even worse. The week of my 30th birthday, I woke up and it suddenly felt like my big toe had been broken. It was one of the most painful things I've ever felt (and I've given birth 4 times, twice without pain medication!) I had to limp everywhere, because walking was excruciating. I frantically googled my symptoms, but all I came up with was gout. It was slightly swollen, but not red, and I had absolutely NONE of the risk factors for gout. It made no sense. Then, one day, about a week later, the pain disappeared as quickly as it had come.
My naturopath was puzzled. I told her about other symptoms I had recently been experiencing - pins and needles and numbness sensations, most commonly in my feet and up my legs; anxiety; difficulty losing weight (in the 3 months of completely changing my diet and continuing to work out, I barely lost 5 lbs); and episodes of "inflammation flares" as I called them. Usually occurring in the evening, I would begin to feel like I was coming down with something. I would feel feverish, have chills, body aches, and often every single joint in my body would pulse with constant pain. I also had the sensation of my heart skipping a beat when my pulse reached 150 during exercise. We did more blood work, only to get pages showing I have extremely high levels of inflammation, but not revealing the cause. She suggested I see a rheumatologist.
I headed to my rheumatology appointment with a folder of my blood work. I desperately wanted him to find the cause. I didn't want to have RA, but at that point, I just wanted to have a diagnosis. I talked to him, explained my symptoms. He examined my hands, sighed and looked at me. "I do not believe you have rheumatoid arthritis. You do not have the signs of it. Some Caucasian women have naturally high rheumatoid factors." He paused, "I believe you have something called generalized anxiety." I was so shocked that I just sat in silence. He continued, "you're young, enjoy your life. Stop stressing about your health!" So that was that. He thought it was all in my head. I left feeling relieved that I did not have RA, but it was overshadowed by how small and insignificant the doctor had made me feel. I also still did not have a diagnosis. I felt depressed and defeated.
At home, I continued to search for a cause. I spent hours bent over the computer, following every page of blood work I had done so I would understand what each result meant. I researched everything from genetic mutations to vitamin toxicity. Nothing seemed to fit. I was also feeling constant brain fog, like everything was a dream. I was forgetting more, and often found myself unable to spell words I normally can spell without an issue. My weight loss continued to slow, regardless of going to the gym several times a week. In August & September, I gained 14 pounds - everything I had lost after having the baby - seemingly overnight. I struggled to sleep for a week or two at a time, then slept fine for a few weeks. It was a cycle I couldn't figure out. The pain was getting worse, my fatigue becoming greater every day. I would wake up with painful feet and sore ribs. No amount of sleep ever helped lift the fatigue. I would get recurring sore throats, I never knew if I was getting sick or not. I also had been having shortness of breath. It felt like I couldn't get a deep enough breath. (I know now it is called air hunger, a classic symptom of Babesia) I had constant stomach problems and floaters appear in my eyes. Some days I'd become so depressed I just wanted to hide in my room. Other days, I'd become angry over small, inconsequential things. Despite my exercising, I would get winded going up the stairs, and my muscles would burn. I started to realize I was no longer gaining muscle. Doing the same exercise over and over would normally become easier with time; for me, it became harder. My muscles burned just by holding a book. I stopped running at the gym, and instead began cycling. I also continued to attend my favorite fitness class at the gym. I refused to give up.
In February 2017, I decided to revisit Lyme disease. I did more research and found the Horowitz-Lyme-MSIDS questionnaire, designed to gauge the odds of you having a tick-borne illness. I printed it out and answered the questions. A score above 46 indicates a high probability of tick-borne illness. My score was 92. I brought the questionnaire with me to my next naturopath appointment. She agreed that I had high probability, but yet another Lyme test was negative, as well as a Babesia test.
Prior to this appointment, I had joined a Facebook group created to support women who have Lyme. I learned so much from the women there. Between that group and my research, I found out that Lyme isn't easily cured. I found out that doctors and insurance companies are in denial of this, and that chronic Lyme even exists. I found out testing is notoriously inaccurate. I found out that 28 days of antibiotics is NOT enough to kill Lyme. The Lyme spirochetes are able to penetrate tissue and hide. I quickly realized my husband has chronic Lyme. I also realized finding a doctor wasn't going to be easy. Many doctors who treat Lyme are targeted and forced to give up their license. Of those that remain, most do not have contracts with insurance.
I was overwhelmed, but determined. When I had reached the end with my naturopath, I sought out a Lyme literate doctor (LLMD) that takes insurance. Through recommendations I found one, an hour-and-a-half away. I made an appointment and luckily had a call earlier that they had a cancellation. It happened to fall on my birthday, but I took it anyway. I walked in, hopeful but cautious, with a thick folder of blood work results hugged to my chest. Luckily, I wasn't disappointed. She went through all my blood work, looked at my Horowitz questionnaire, and told me she would help me get to the bottom of it. I opted to pay out of pocket for the more sensitive Lyme testing done through IGeneX lab in California. I wanted to be tested for co-infections as well. $1400 later, I was joking that I was expecting a free TV in the mail. Before I left, my new LLMD said, "I'm going to work hard for you. I promise." When I got in the car to drive home from that appointment, the relief I felt was intense. I couldn't stop crying. Knowing I was in the hands of someone who may be able to help me was something I hadn't felt before. I was hopeful.
In June, I finally got the results: I was positive for Lyme, tick relapsing fever, Babesia & Bartonella. I cried, and then was angry, and then realized...it was time to fight.
For me, one of those moments took place in the late fall of 2014. I was pregnant with our youngest child. I had suffered a miscarriage earlier that same year. It was a gut-wrenching, emotional experience. I was thrilled to be pregnant again, but also wrought with anxiety, and understandably so. One year before, I had begun hand-embroidering. I found it to be relaxing, and a good way to make a small amount of money on the side. Christmas was approaching, and I was busy stitching custom ornaments from my couch. Suddenly, I noticed an ache in the joints of my hands. I thought maybe I had overdone it with the stitching, so shortly after I called it a night. I shrugged it off, but as the days went on, the pain continued.
The next time I met with my midwife, I mentioned the pain to her. I was becoming concerned, because I have never, ever had joint pain. She chalked it up to pregnancy. "You know, this IS your fourth child, your body has been through a lot. You're not getting any younger!" she said as she smiled. I was not quite convinced. After all, I was only 28 years old. Yes, I had given birth to 3 children, but I would imagine my knees hurting, not my fingers. So at the following appointment, a few months later, when the joint pain had gotten worse, I asked her to test my thyroid, and to test for Lyme disease.
I was no stranger to Lyme. I was born and raised in the small, wooded state of Rhode Island. Ticks were a part of life growing up in New England. I had been told (and people are still being told) that Lyme disease is easy to cure; catch it early and a round of antibiotics is all you need. So I never worried. When I was 15, I met someone who I described as "the hottest guy I had ever seen" (gotta love teenagers!) He was in Rhode Island living with his best friend for his senior year of high school. His family was from Idaho, although they lived in Rhode Island for several years when he was younger. We hit it off right away, and as silly as it sounds, I knew within a few months that he would be the man I married. Unfortunately, his plan was to move back home to Idaho at the end of the summer. When he left, I was devastated. I moped around like any other heartbroken teen. Soon after, I found out he was sick, and then hospitalized, 3,000 miles away. He had a very high fever, body aches, a headache and bell's palsy (a condition where the muscles on one side of your face become weak or paralyzed) The doctors had no idea what he had. They gave him a spinal tap to check for spinal meningitis, which was negative. Somehow, though I am not sure how, he was finally diagnosed with Lyme disease. We believe he caught it in Rhode Island, but didn't have symptoms until he was out West. He did a course of 28 days of antibiotics and was pronounced cured.
It ended up being that he was the man I would marry. As a matter of fact, a few days ago we celebrated 13 years of marriage. I tell you this story so that you realize how close to home Lyme hits, and yet how naive I still was about it.
When my test results came back, they were negative. I was left with a mystery. I clung to the idea that it was caused by pregnancy, and hoped it would go away. By this time, I had also developed a problem with my hip flexors, but, again, being pregnant, it was blamed on - you guessed it - pregnancy.
April 28th, 2015, my beautiful rainbow baby, Leah Grace was born. Unfortunately, my symptoms did not disappear, they did the opposite - continued to worsen. I also began to get other symptoms, such as insomnia. I would lay in bed, exhausted by being up all night to meet the demands of a newborn, but unable to fall asleep. By November, I found myself in pain nearly every day. I had a constant ache in my joints. The most often affected were my fingers, but the pain also migrated throughout my body every few seconds, from my hands, to my wrists, elbows, knees, ankles and toes. I found myself at a local primary care doctor, asking her to test for Lyme again. She told me, "I have a low-tolerance for testing" but did some blood work anyway. I soon found out I had an positive ANA and an elevated rheumatoid factor, and again, Lyme was negative. A rheumatologist would call me with an appointment. I began to research rheumatoid arthritis. I ordered fish oil capsules because I had read they would help with the inflammation. The fish oil worked like magic - I barely had any pain when I was on it. I waited, but a rheumatologist never called me, and I continued on my daily life, forgetting all about it.
In February of 2016, I joined the new local YMCA. I was ready to get into shape and back to my old self. I began having pain in my hip flexors when I would run. I bought new running shoes, but the pain persisted. Soon I would also get sharp pains in my shins and ankles. I slowed down the running but was also noticing foot pain when I would get out of bed in the morning. My toes would also feel sore, like they had been clenched tight all night. My joint pain also began to peek through again, so in March, I decided to visit a naturopath. I liked the idea of a doctor who treated the whole body, to find the root cause, rather than just treating symptoms. I went to my first appointment with high hopes. She was the first doctor that spent an hour actually listening to me. I had 23 vials of blood taken. When the results came back, I had several food sensitivities, negative ANA, elevated RF, but not much else remarkable. My CD57 was low, and my inflammation markers were high. She had me purchase some supplements, and for 3 months I had to stay off of the foods I was sensitive to - gluten, casein (milk), whey (cheese), eggs, soy, white potato, apple, banana, and tomato. When I returned we would determine if we could reintroduce some of the foods. I believe she was hoping the inflammation was caused by foods that I was sensitive to. And in the end, she wasn't entirely incorrect.
I changed my diet 100%. I was already not eating gluten, but the other foods were hard to cut out. But I did it, for 3 months. I was eating healthier than ever, and exercising 3-4 days a week. But I was feeling even worse. The week of my 30th birthday, I woke up and it suddenly felt like my big toe had been broken. It was one of the most painful things I've ever felt (and I've given birth 4 times, twice without pain medication!) I had to limp everywhere, because walking was excruciating. I frantically googled my symptoms, but all I came up with was gout. It was slightly swollen, but not red, and I had absolutely NONE of the risk factors for gout. It made no sense. Then, one day, about a week later, the pain disappeared as quickly as it had come.
My naturopath was puzzled. I told her about other symptoms I had recently been experiencing - pins and needles and numbness sensations, most commonly in my feet and up my legs; anxiety; difficulty losing weight (in the 3 months of completely changing my diet and continuing to work out, I barely lost 5 lbs); and episodes of "inflammation flares" as I called them. Usually occurring in the evening, I would begin to feel like I was coming down with something. I would feel feverish, have chills, body aches, and often every single joint in my body would pulse with constant pain. I also had the sensation of my heart skipping a beat when my pulse reached 150 during exercise. We did more blood work, only to get pages showing I have extremely high levels of inflammation, but not revealing the cause. She suggested I see a rheumatologist.
I headed to my rheumatology appointment with a folder of my blood work. I desperately wanted him to find the cause. I didn't want to have RA, but at that point, I just wanted to have a diagnosis. I talked to him, explained my symptoms. He examined my hands, sighed and looked at me. "I do not believe you have rheumatoid arthritis. You do not have the signs of it. Some Caucasian women have naturally high rheumatoid factors." He paused, "I believe you have something called generalized anxiety." I was so shocked that I just sat in silence. He continued, "you're young, enjoy your life. Stop stressing about your health!" So that was that. He thought it was all in my head. I left feeling relieved that I did not have RA, but it was overshadowed by how small and insignificant the doctor had made me feel. I also still did not have a diagnosis. I felt depressed and defeated.
At home, I continued to search for a cause. I spent hours bent over the computer, following every page of blood work I had done so I would understand what each result meant. I researched everything from genetic mutations to vitamin toxicity. Nothing seemed to fit. I was also feeling constant brain fog, like everything was a dream. I was forgetting more, and often found myself unable to spell words I normally can spell without an issue. My weight loss continued to slow, regardless of going to the gym several times a week. In August & September, I gained 14 pounds - everything I had lost after having the baby - seemingly overnight. I struggled to sleep for a week or two at a time, then slept fine for a few weeks. It was a cycle I couldn't figure out. The pain was getting worse, my fatigue becoming greater every day. I would wake up with painful feet and sore ribs. No amount of sleep ever helped lift the fatigue. I would get recurring sore throats, I never knew if I was getting sick or not. I also had been having shortness of breath. It felt like I couldn't get a deep enough breath. (I know now it is called air hunger, a classic symptom of Babesia) I had constant stomach problems and floaters appear in my eyes. Some days I'd become so depressed I just wanted to hide in my room. Other days, I'd become angry over small, inconsequential things. Despite my exercising, I would get winded going up the stairs, and my muscles would burn. I started to realize I was no longer gaining muscle. Doing the same exercise over and over would normally become easier with time; for me, it became harder. My muscles burned just by holding a book. I stopped running at the gym, and instead began cycling. I also continued to attend my favorite fitness class at the gym. I refused to give up.
In February 2017, I decided to revisit Lyme disease. I did more research and found the Horowitz-Lyme-MSIDS questionnaire, designed to gauge the odds of you having a tick-borne illness. I printed it out and answered the questions. A score above 46 indicates a high probability of tick-borne illness. My score was 92. I brought the questionnaire with me to my next naturopath appointment. She agreed that I had high probability, but yet another Lyme test was negative, as well as a Babesia test.
Prior to this appointment, I had joined a Facebook group created to support women who have Lyme. I learned so much from the women there. Between that group and my research, I found out that Lyme isn't easily cured. I found out that doctors and insurance companies are in denial of this, and that chronic Lyme even exists. I found out testing is notoriously inaccurate. I found out that 28 days of antibiotics is NOT enough to kill Lyme. The Lyme spirochetes are able to penetrate tissue and hide. I quickly realized my husband has chronic Lyme. I also realized finding a doctor wasn't going to be easy. Many doctors who treat Lyme are targeted and forced to give up their license. Of those that remain, most do not have contracts with insurance.
I was overwhelmed, but determined. When I had reached the end with my naturopath, I sought out a Lyme literate doctor (LLMD) that takes insurance. Through recommendations I found one, an hour-and-a-half away. I made an appointment and luckily had a call earlier that they had a cancellation. It happened to fall on my birthday, but I took it anyway. I walked in, hopeful but cautious, with a thick folder of blood work results hugged to my chest. Luckily, I wasn't disappointed. She went through all my blood work, looked at my Horowitz questionnaire, and told me she would help me get to the bottom of it. I opted to pay out of pocket for the more sensitive Lyme testing done through IGeneX lab in California. I wanted to be tested for co-infections as well. $1400 later, I was joking that I was expecting a free TV in the mail. Before I left, my new LLMD said, "I'm going to work hard for you. I promise." When I got in the car to drive home from that appointment, the relief I felt was intense. I couldn't stop crying. Knowing I was in the hands of someone who may be able to help me was something I hadn't felt before. I was hopeful.
In June, I finally got the results: I was positive for Lyme, tick relapsing fever, Babesia & Bartonella. I cried, and then was angry, and then realized...it was time to fight.
Comments
Post a Comment