Robin's Lyme Disease Treatment
Donation protected
Hi! My name’s Ken, and I’m asking you to consider donating to help us afford my wife Robin’s treatment for her chronic Lyme disease and parasites.
I didn’t meet Robin until our junior year of college, when she’d already been sick for 4 years. I’ve been told that prior to her getting sick, she was the life of the party. As a kid, her dad had nicknamed her the Mouth of the South. Her parents tell me stories of how she’d walk up to complete strangers in the store and start up a conversation with them. She was always hanging out with friends, and loved making sure everyone felt included. And she was an athlete – loved basketball and volleyball. She won the state 3-point shooting championship in high school, and had a couple triple-double games. On top of that, she kept herself busy with other extracurricular events and church activities. One of her favorite things was to spend time with the inner city kids that came from rough neighborhoods. To put it simply, she was living to the fullest and enjoying every second of it.
The summer between 11th and 12th grade, she went on a missions trip to Honduras. One afternoon her youth group went to a local river for some swimming. Of course, there was a waterfall, and Robin couldn’t resist from jumping off the 50 foot cliff into the water below. Go figure. After a fun afternoon, it was time to head back for some evening activities, and Robin noticed a few leeches stuck to her stomach. Being 17, she wacked them off, thought it was gross, and was on her way. A few hours later she was very woozy and had to sleep through the evening activity. The next morning she had a strange rash on her face, and chalked it up to something she ate. The trip ended well and she was ready to enjoy her senior year of high school. She had always been very healthy, and never took a sick day. Her senior year she started having various aches and pains, which weren’t normal for her, but figured it had to be from the different sports she was playing. While her symptoms weren’t serious at the time, she had this gut feeling that something was wrong. She went on to win homecoming queen that year, was awarded a scholarship upon graduating, and began learning to smile through pain.
A month before graduating, she went on a father-daughter camping trip. One night she noticed a bunch of ticks all over her stomach. Again, she wacked them off and thought nothing of it. A month later, she enjoyed her graduation, and the next day was sick in bed all day with a fever. From that point onward, her symptoms continued to get worse. Throughout the rest of that summer, her symptoms of pain and fatigue worsened. She saw a few doctors, one of whom said don’t eat anything white (WHAT???), and another said they couldn’t help her. She was nervous about starting college, but didn’t have any diagnosis, and being the go-getter she is, decided to go for it.
College was extremely difficult and painful for her. She had to sit out 2 separate semesters, taking a total of 5 years to graduate. Her freshman year she began struggling with motor skills - couldn’t hold on to the shampoo bottle in the shower. That’s when she realized she had neurological issues (the disease hit her neurological and muscular systems the hardest). She also began having digestive problems – stomach would bloat out with extreme pain after meals. And the pain and fatigue continued to get worse. She would see countless doctors, none of whom could diagnose her, and many said (or acted) like she was crazy. Why would someone so vibrant and healthy fake being miserable???
A few months after Robin and I met at the start of our junior year, she was diagnosed with fibromyalgia, which we now know is a common misdiagnosis of Lyme. I remember when she told me and a few other friends of the diagnosis I could tell she was weary from 4 years of suffering, but was thankful for the diagnosis. The only problem was she did everything the doctors told her to, from diet, to exercise, to daily habits, and she continued to get worse. And the medicine they’d give her for it made her even sicker. Finally after a year and a half of failed fibromyalgia treatment, it was time for our college graduation. She had a miserable senior year, in which she even got shingles, but refused to give up. I really don’t know how she had the strength to finish. The day of graduation she had blurred vision and was so dizzy should could barely walk straight (on top of the daily pain, which at this point was extreme), but was determined to walk across the stage on her own to receive her diploma. She graduated well, even received an award from the business faculty for being one of the best students in marketing/sales. When I think about her walking across that stage I still tear up because I know how incredibly determined she was to overcome everything she did to get to that point. I really haven’t done justice explaining how difficult college was for her, and am very proud of/inspired by her for that accomplishment.
Later that summer we were finally married. It had been less than a year from when we started dating, and it was about time. With the stress of college/wedding planning finally behind us we were hopeful that Robin would finally be able to just relax and starting regaining her strength. Not to be. Within 2 months of our wedding she was literally on her deathbed. Things got so bad so fast it’s really all a blur. She began having convulsions daily for no apparent reason. She’d lose feeling on an entire half of her body for a day at a time. Her pain/weakness became so bad she couldn’t sit up in bed on her own and took every ounce of strength to crawl from her bed to the bathroom. I remember on at least 2 different occasions saying my goodbyes to her as she faded in and out of consciousness while we were waiting for the ambulance. Multiple ER trips within a few weeks, seeing specialists and no one could give her an answer. We were actually hoping she’d get diagnosed with MS so we could finally know what was wrong and start treatment. Then a dear friend of Robin’s found a YouTube video of someone with chronic Lyme disease having convulsions just like hers. We started doing some research and came across the documentary Under Our Skin. The light bulb finally went off. That would explain the strange fever a month after the tick bites in 12th grade. We looked up doctors who specialize in chronic Lyme and found one just 20 minutes from where she had grown up and her parents still lived. By the time she had her first appointment she was so sick one of the nurses thought she was a new autistic patient. Finally, after 6 and a half years of suffering with no answers, being misdiagnosed, being treated like she was crazy or just looking for attention, she was diagnosed with chronic Lyme disease, parasites (from the leech bites in Honduras), and a few other bacterial/viral infections that are co-infections of Lyme.
As difficult as those 6 years had been for her, nothing could’ve prepared her for the next 3. Treating chronic Lyme disease is actually unbelievably painful. It’s detailed to explain, but basically after having a disease spread in your body untreated for 6 years, when you try to kill off the disease everything goes crazy. It’s called a Herxheimer reaction, or herxing. A very fitting word. She went on heavy doses of antibiotics, both oral and IV. She had a picc line in her arm for over a year so we could do IV antibiotics from home. At one point doing 18 IV antiobiotics a week, and was supposed to be taking probably 40+ vitamins/supplements a day if she could stomach them all. The convulsions she began having before the diagnosis intensified to an indescribable level. Watching her literally get thrown all over the bed, down onto the floor and uncontrollably slamming up against walls and furniture, all while completely conscious, was like living in a horror movie. One night had 7 episodes in 6 hours. She struggled with losing memory, would forget who I was and even her parents. One night she didn’t know where she was and almost wandered out of our apartment. I’ve given her mouth-to-mouth about a dozen times. The list goes on and on. (A note on Lyme doctors…many have been sued by insurance companies and had their medical licenses suspended for “reckless” treatment plans that are bad for the patient…Robin’s doctor is the only one in all these years that actually believed her, and is helping her get better. If Lyme patients would be properly diagnosed/treated in the first place, difficult treatments wouldn’t be necessary.) Her doctor has told us that she is the most extreme case he has ever tried to treat. Sometimes we would joke that she’s his guinea pig. I’ll never forget one night after having one of those horrible episodes, through the tears she told me that if her doctor can learn how to treat other patients better by all that she was going through, then it would be worth it. When she had the strength, she enjoyed singing to take her mind off what she was feeling. It amazes me that in all these years I honestly can’t remember her complaining about what’s happened. Just about every night after I’d get home from work and ask her to tell me about her day, she’d start describing her symptoms, and stop because she felt like she was complaining and ask me how work had been. At a time when I would have been totally focused on myself, she would literally be brought to tears because she was so disappointed that she couldn’t do something nice for other people. She also couldn’t resist getting up and doing something when she had the strength. She opened up an Etsy shop to sell homemade paper crafts, and eventually got a part time job.
Thankfully, Robin has seen some improvement over the past year. She still occasionally has convulsions and other severe symptoms, but as a whole has made significant strides. We can’t express how thankful we are for that. Over the past month, her health has been getting worse to the point that it’s once again very difficult for her to do much of anything around the house. We never know when things will be up or down, and we hope they’ll be up soon.
So, after everything that we’ve already been through, why are we asking for your help now? We can’t thank Robin’s parents enough for their help over the past few years. Robin’s mom literally came to rescue just before we got the diagnosis, and they’ve been covering all medical bills for us the past three years. They’ve spent close to $85,000 over the last 3 years, and that doesn’t include all of the doctors Robin saw before getting a correct diagnosis. Treating Lyme is so expensive because the CDC doesn’t recognize it as a chronic condition, so insurance companies don’t cover it. Also, as sick as Robin was, she needed some very drastic treatment. After all these years, it’s getting to be too expensive to afford the whole treatment plan Robin’s doctor is recommending. Not being able to afford all the treatments is a large part of the reason for the decline over the past month.
We’re asking for $30,000 because that should be enough to cover the next year of expenses. Donations would go only toward Robin’s medical expenses, for example: prescription medications (her pain is still constant, and very bad), IV infusions (both for antibiotics and nutritional support – which would provide a substantial energy/immune system boost), possibly having another PICC line put in, and eventually an IVIG treatment (this would cost $1,000’s, but is extremely effective at boosting the immune system since Robin’s is very unresponsive at this point). Robin’s doctor has been encouraging her to get the IVIG treatment for over a year, but because of the insurance situation we can’t afford it. This summer will be 10 years since the trip to Honduras, and we’re hopeful that with these treatments she’d start to make some significant, long lasting improvements.
Even if you’re unable to donate, we most appreciate your prayers as Robin still has a long way to go before she’s able to just manage to live a normal life. We hope that at some point she’ll have the strength and relief from pain to enjoy life and not be in a daily struggle. That will be much more probable with your help.
If you have questions about chronic Lyme disease, please let us know. You can also check out ilads.org, or look up the documentary Under Our Skin. We greatly appreciate your prayers and support.
I didn’t meet Robin until our junior year of college, when she’d already been sick for 4 years. I’ve been told that prior to her getting sick, she was the life of the party. As a kid, her dad had nicknamed her the Mouth of the South. Her parents tell me stories of how she’d walk up to complete strangers in the store and start up a conversation with them. She was always hanging out with friends, and loved making sure everyone felt included. And she was an athlete – loved basketball and volleyball. She won the state 3-point shooting championship in high school, and had a couple triple-double games. On top of that, she kept herself busy with other extracurricular events and church activities. One of her favorite things was to spend time with the inner city kids that came from rough neighborhoods. To put it simply, she was living to the fullest and enjoying every second of it.
The summer between 11th and 12th grade, she went on a missions trip to Honduras. One afternoon her youth group went to a local river for some swimming. Of course, there was a waterfall, and Robin couldn’t resist from jumping off the 50 foot cliff into the water below. Go figure. After a fun afternoon, it was time to head back for some evening activities, and Robin noticed a few leeches stuck to her stomach. Being 17, she wacked them off, thought it was gross, and was on her way. A few hours later she was very woozy and had to sleep through the evening activity. The next morning she had a strange rash on her face, and chalked it up to something she ate. The trip ended well and she was ready to enjoy her senior year of high school. She had always been very healthy, and never took a sick day. Her senior year she started having various aches and pains, which weren’t normal for her, but figured it had to be from the different sports she was playing. While her symptoms weren’t serious at the time, she had this gut feeling that something was wrong. She went on to win homecoming queen that year, was awarded a scholarship upon graduating, and began learning to smile through pain.
A month before graduating, she went on a father-daughter camping trip. One night she noticed a bunch of ticks all over her stomach. Again, she wacked them off and thought nothing of it. A month later, she enjoyed her graduation, and the next day was sick in bed all day with a fever. From that point onward, her symptoms continued to get worse. Throughout the rest of that summer, her symptoms of pain and fatigue worsened. She saw a few doctors, one of whom said don’t eat anything white (WHAT???), and another said they couldn’t help her. She was nervous about starting college, but didn’t have any diagnosis, and being the go-getter she is, decided to go for it.
College was extremely difficult and painful for her. She had to sit out 2 separate semesters, taking a total of 5 years to graduate. Her freshman year she began struggling with motor skills - couldn’t hold on to the shampoo bottle in the shower. That’s when she realized she had neurological issues (the disease hit her neurological and muscular systems the hardest). She also began having digestive problems – stomach would bloat out with extreme pain after meals. And the pain and fatigue continued to get worse. She would see countless doctors, none of whom could diagnose her, and many said (or acted) like she was crazy. Why would someone so vibrant and healthy fake being miserable???
A few months after Robin and I met at the start of our junior year, she was diagnosed with fibromyalgia, which we now know is a common misdiagnosis of Lyme. I remember when she told me and a few other friends of the diagnosis I could tell she was weary from 4 years of suffering, but was thankful for the diagnosis. The only problem was she did everything the doctors told her to, from diet, to exercise, to daily habits, and she continued to get worse. And the medicine they’d give her for it made her even sicker. Finally after a year and a half of failed fibromyalgia treatment, it was time for our college graduation. She had a miserable senior year, in which she even got shingles, but refused to give up. I really don’t know how she had the strength to finish. The day of graduation she had blurred vision and was so dizzy should could barely walk straight (on top of the daily pain, which at this point was extreme), but was determined to walk across the stage on her own to receive her diploma. She graduated well, even received an award from the business faculty for being one of the best students in marketing/sales. When I think about her walking across that stage I still tear up because I know how incredibly determined she was to overcome everything she did to get to that point. I really haven’t done justice explaining how difficult college was for her, and am very proud of/inspired by her for that accomplishment.
Later that summer we were finally married. It had been less than a year from when we started dating, and it was about time. With the stress of college/wedding planning finally behind us we were hopeful that Robin would finally be able to just relax and starting regaining her strength. Not to be. Within 2 months of our wedding she was literally on her deathbed. Things got so bad so fast it’s really all a blur. She began having convulsions daily for no apparent reason. She’d lose feeling on an entire half of her body for a day at a time. Her pain/weakness became so bad she couldn’t sit up in bed on her own and took every ounce of strength to crawl from her bed to the bathroom. I remember on at least 2 different occasions saying my goodbyes to her as she faded in and out of consciousness while we were waiting for the ambulance. Multiple ER trips within a few weeks, seeing specialists and no one could give her an answer. We were actually hoping she’d get diagnosed with MS so we could finally know what was wrong and start treatment. Then a dear friend of Robin’s found a YouTube video of someone with chronic Lyme disease having convulsions just like hers. We started doing some research and came across the documentary Under Our Skin. The light bulb finally went off. That would explain the strange fever a month after the tick bites in 12th grade. We looked up doctors who specialize in chronic Lyme and found one just 20 minutes from where she had grown up and her parents still lived. By the time she had her first appointment she was so sick one of the nurses thought she was a new autistic patient. Finally, after 6 and a half years of suffering with no answers, being misdiagnosed, being treated like she was crazy or just looking for attention, she was diagnosed with chronic Lyme disease, parasites (from the leech bites in Honduras), and a few other bacterial/viral infections that are co-infections of Lyme.
As difficult as those 6 years had been for her, nothing could’ve prepared her for the next 3. Treating chronic Lyme disease is actually unbelievably painful. It’s detailed to explain, but basically after having a disease spread in your body untreated for 6 years, when you try to kill off the disease everything goes crazy. It’s called a Herxheimer reaction, or herxing. A very fitting word. She went on heavy doses of antibiotics, both oral and IV. She had a picc line in her arm for over a year so we could do IV antibiotics from home. At one point doing 18 IV antiobiotics a week, and was supposed to be taking probably 40+ vitamins/supplements a day if she could stomach them all. The convulsions she began having before the diagnosis intensified to an indescribable level. Watching her literally get thrown all over the bed, down onto the floor and uncontrollably slamming up against walls and furniture, all while completely conscious, was like living in a horror movie. One night had 7 episodes in 6 hours. She struggled with losing memory, would forget who I was and even her parents. One night she didn’t know where she was and almost wandered out of our apartment. I’ve given her mouth-to-mouth about a dozen times. The list goes on and on. (A note on Lyme doctors…many have been sued by insurance companies and had their medical licenses suspended for “reckless” treatment plans that are bad for the patient…Robin’s doctor is the only one in all these years that actually believed her, and is helping her get better. If Lyme patients would be properly diagnosed/treated in the first place, difficult treatments wouldn’t be necessary.) Her doctor has told us that she is the most extreme case he has ever tried to treat. Sometimes we would joke that she’s his guinea pig. I’ll never forget one night after having one of those horrible episodes, through the tears she told me that if her doctor can learn how to treat other patients better by all that she was going through, then it would be worth it. When she had the strength, she enjoyed singing to take her mind off what she was feeling. It amazes me that in all these years I honestly can’t remember her complaining about what’s happened. Just about every night after I’d get home from work and ask her to tell me about her day, she’d start describing her symptoms, and stop because she felt like she was complaining and ask me how work had been. At a time when I would have been totally focused on myself, she would literally be brought to tears because she was so disappointed that she couldn’t do something nice for other people. She also couldn’t resist getting up and doing something when she had the strength. She opened up an Etsy shop to sell homemade paper crafts, and eventually got a part time job.
Thankfully, Robin has seen some improvement over the past year. She still occasionally has convulsions and other severe symptoms, but as a whole has made significant strides. We can’t express how thankful we are for that. Over the past month, her health has been getting worse to the point that it’s once again very difficult for her to do much of anything around the house. We never know when things will be up or down, and we hope they’ll be up soon.
So, after everything that we’ve already been through, why are we asking for your help now? We can’t thank Robin’s parents enough for their help over the past few years. Robin’s mom literally came to rescue just before we got the diagnosis, and they’ve been covering all medical bills for us the past three years. They’ve spent close to $85,000 over the last 3 years, and that doesn’t include all of the doctors Robin saw before getting a correct diagnosis. Treating Lyme is so expensive because the CDC doesn’t recognize it as a chronic condition, so insurance companies don’t cover it. Also, as sick as Robin was, she needed some very drastic treatment. After all these years, it’s getting to be too expensive to afford the whole treatment plan Robin’s doctor is recommending. Not being able to afford all the treatments is a large part of the reason for the decline over the past month.
We’re asking for $30,000 because that should be enough to cover the next year of expenses. Donations would go only toward Robin’s medical expenses, for example: prescription medications (her pain is still constant, and very bad), IV infusions (both for antibiotics and nutritional support – which would provide a substantial energy/immune system boost), possibly having another PICC line put in, and eventually an IVIG treatment (this would cost $1,000’s, but is extremely effective at boosting the immune system since Robin’s is very unresponsive at this point). Robin’s doctor has been encouraging her to get the IVIG treatment for over a year, but because of the insurance situation we can’t afford it. This summer will be 10 years since the trip to Honduras, and we’re hopeful that with these treatments she’d start to make some significant, long lasting improvements.
Even if you’re unable to donate, we most appreciate your prayers as Robin still has a long way to go before she’s able to just manage to live a normal life. We hope that at some point she’ll have the strength and relief from pain to enjoy life and not be in a daily struggle. That will be much more probable with your help.
If you have questions about chronic Lyme disease, please let us know. You can also check out ilads.org, or look up the documentary Under Our Skin. We greatly appreciate your prayers and support.
Organizer
Ken Troutman
Organizer
Lynchburg, VA
