I’m twenty-four and I’ve been sick since I was ten. I got sick on the first day of fifth grade, and nobody believed it wasn’t because I didn’t want to go to school. A month later my parents pulled me out and I was homeschooled. I went through countless doctors, and that’s terrifying when you’re an adult, let alone ten. I found a nutritionist who helped me get well enough to go back to sixth grade, but by then I had many allergies and physical weaknesses that kept me from really fitting back in.
I stayed mostly healthy until eighth grade, when I got sick all over again. I had to leave school in the middle of the year. I was having panic attacks (of course it was all in my head!), short breath, vertigo, and I always felt like I was going to be sick or pass out. Another round of doctors ensued, one of whom wanted to admit me to a mental facility because he was convinced I was suicidal. Tell that to a fourteen-year-old.
I finished eighth grade at home and continued to homeschool, but I also continued to get worse. Finally, my family found out our home was infested with stachybotris, a deadly toxic mold. We moved, and we have nothing today that we owned before fall of 2001. It was a miracle that we got out relatively unscathed. We thought all our health problems were over.
Friday, July 29, 2011
Tuesday, July 26, 2011
A Series of Miracles--Victoria Bylin
"Something terrible happened to you.”
These are not words you want to hear from an ophthalmologist. At the time I was sitting in his fancy chair in a dark exam room, my eyes red and hurting, and my vision distorted in the way of pebbled glass. I had no idea at the time and neither did the ophthalmologist, but this was the beginning of my encounter with Lyme Disease. By a series of coincidences--I’d call them miracles--I was blessed to be diagnosed early and treated successfully.
My Lyme ordeal began while I was working at the computer. I blinked and thought, “I need new glasses.” A few moments later I looked in a mirror and saw that both eyes were bloodshot. I figured I had conjunctivitis and met a friend for lunch as planned. By the end of the meal, my eyes weren’t just red. They hurt every time I changed my focus. That evening I developed the strangest fever I’ve ever had. It spiked at 103 degrees and then disappeared.
These are not words you want to hear from an ophthalmologist. At the time I was sitting in his fancy chair in a dark exam room, my eyes red and hurting, and my vision distorted in the way of pebbled glass. I had no idea at the time and neither did the ophthalmologist, but this was the beginning of my encounter with Lyme Disease. By a series of coincidences--I’d call them miracles--I was blessed to be diagnosed early and treated successfully.
My Lyme ordeal began while I was working at the computer. I blinked and thought, “I need new glasses.” A few moments later I looked in a mirror and saw that both eyes were bloodshot. I figured I had conjunctivitis and met a friend for lunch as planned. By the end of the meal, my eyes weren’t just red. They hurt every time I changed my focus. That evening I developed the strangest fever I’ve ever had. It spiked at 103 degrees and then disappeared.
Friday, July 22, 2011
I Will Make It Through--Tiffany Gonzalez: Part 2
What I saw and heard next changed my life. The news segment was about a documentary movie called Under Our Skin. They were saying how all these people were misdiagnosed for years, and eventually found out they had Lyme Disease. I couldn't believe my ears! While watching, I felt an instant connection with these people. They sounded like me; our stories were so similar. I felt like that was me on the TV--but wait--I had tested NEGATIVE for Lyme in the past.
The next day I couldn’t get the news segment out of my mind. I was ridiculously giddy. My naive self feels stupid about my excitement now. If only I knew what I was in for. I did online searches for the movie and looked up Lyme Disease in Chicago. I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn't really expect a call back. No one believed me before, right? Why would someone call me back? Well, I got a call back from Lauren within a half hour. Wow! It turned out she was in the news segment. Her whole family has Lyme Disease; she lived right here in the suburbs. She directed me to where I could go for the much more accurate test called a Western Blot Blood Test done by IGeneX.
That day, I sent out a FB message and email to my friends, inviting them to come see Under Our Skin with me. No one responded. Who can blame them? They didn't know anything about this "Lyme" thing, and it didn't affect them, so why should they care? I get that. I do. At least my little sister Adriana came with me. Thank you! We saw the movie and I think I sobbed through most of it. I felt like the people on the screen were telling my story, without even knowing me. It was a crazy experience.
I went for my Western Blot test and waited a month for the results (that's how long it takes). I had prepared myself for the grueling results and expected them to be positive. I had all the symptoms. Well, my doctor read--misread--the results and told me they were negative. I cried. I cried so much. I was glad I didn't have this horrible disease, but then what was wrong with me? I left with my bittersweet answer and never felt more defeated. Now I was depressed.
The next day I couldn’t get the news segment out of my mind. I was ridiculously giddy. My naive self feels stupid about my excitement now. If only I knew what I was in for. I did online searches for the movie and looked up Lyme Disease in Chicago. I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn't really expect a call back. No one believed me before, right? Why would someone call me back? Well, I got a call back from Lauren within a half hour. Wow! It turned out she was in the news segment. Her whole family has Lyme Disease; she lived right here in the suburbs. She directed me to where I could go for the much more accurate test called a Western Blot Blood Test done by IGeneX.
That day, I sent out a FB message and email to my friends, inviting them to come see Under Our Skin with me. No one responded. Who can blame them? They didn't know anything about this "Lyme" thing, and it didn't affect them, so why should they care? I get that. I do. At least my little sister Adriana came with me. Thank you! We saw the movie and I think I sobbed through most of it. I felt like the people on the screen were telling my story, without even knowing me. It was a crazy experience.
I went for my Western Blot test and waited a month for the results (that's how long it takes). I had prepared myself for the grueling results and expected them to be positive. I had all the symptoms. Well, my doctor read--misread--the results and told me they were negative. I cried. I cried so much. I was glad I didn't have this horrible disease, but then what was wrong with me? I left with my bittersweet answer and never felt more defeated. Now I was depressed.
Tuesday, July 19, 2011
I Will Make It Through--Tiffany Gonzalez: Part 1
In the summer of 2004, I was bitten by a tick. I was told by my doctor’s office that I had nothing to worry about because the tick hadn't been in me long enough to do any harm. Usually the protocal is 24 hours; if it's in you for less time they THINK you won't have a problem. They told me to keep an eye out for the classic "bull's-eye rash." If I got that, call them immediately. I never got the rash, so I didn't worry.
Not too long after the bite, I started with horrible headaches, abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue. Neurologic and cognitive issues became out of control. Things got much worse after a bad roll-over car accident I had in 2006, jolting my entire health system out of control.
In the summer of 2009, I started forgetting what I was saying in the middle of every conversation. I started making myself talk really, really fast, just so I wouldn’t forget what I was talking about. My throat felt like it was closed up. I'd choke for no reason. I began dropping things, too. My hands twitched like crazy and I would sit on them all the time so no one would notice. They also began to cramp up and close. I would make myself hold large objects thinking that I could prevent the joints from wanting to close up. I had difficulty holding the steering wheel. My thighs trembled all the time and my knees would give out.
I had been at my job for four years at this point, and I knew my duties inside and out. I could do my job with my eyes closed; however, I would get confused doing something as simple as checking in a patient. I would get frustrated with myself all the time. Dyslexia became more common for me. I had anxiety often, and over the smallest things.
Not too long after the bite, I started with horrible headaches, abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue. Neurologic and cognitive issues became out of control. Things got much worse after a bad roll-over car accident I had in 2006, jolting my entire health system out of control.
In the summer of 2009, I started forgetting what I was saying in the middle of every conversation. I started making myself talk really, really fast, just so I wouldn’t forget what I was talking about. My throat felt like it was closed up. I'd choke for no reason. I began dropping things, too. My hands twitched like crazy and I would sit on them all the time so no one would notice. They also began to cramp up and close. I would make myself hold large objects thinking that I could prevent the joints from wanting to close up. I had difficulty holding the steering wheel. My thighs trembled all the time and my knees would give out.
I had been at my job for four years at this point, and I knew my duties inside and out. I could do my job with my eyes closed; however, I would get confused doing something as simple as checking in a patient. I would get frustrated with myself all the time. Dyslexia became more common for me. I had anxiety often, and over the smallest things.
Friday, July 15, 2011
Lyme's Hidden Gifts--K. C. Smith: Part 2
At seventeen I fainted at a funeral, and it had nothing to do with the funeral. It was 100+ degrees out, and it was humid. But it is strange to be only seventeen, and fainting in this great big crowd of 80- and 90-year-olds. Amazing Grace will never sound the same again--they were singing that as I was fighting to keep consciousness. What’s worse is that I succeeded. If I ever faint again I won’t fight it. I don’t think it can possibly hurt as bad as that struggle of mind vs. body to hold on and stay standing and control how you go down. You have to just let it go.
I still loved Bocelli’s music, and I was learning to cook Italian. I loved the whole Italian culture now. Before this I had only cooked stuff that came as a mix in a bag. But I learned I was a good cook and that I enjoyed it, despite the pain in my wrists. They would go numb after enough work. The pain would hit the next day or the day after, but it would be numb for a while so it was well worth it.
We were still making soap. I was having allergic reactions to the artificial fragrances we used to make the soap. We had also put a backyard garden together. Most the plants died that year. We aren’t vegetable gardeners, but I did so much shoveling to make that garden, and I went out there to tend to it. I was the only one who did much gardening. I was hoping that growing our food would be my way to change things.
At eighteen I was sick with my second sinus infection in the fall, a couple weeks after my birthday. Mom was on her annual “Let’s change the kitchen around on Thanksgiving week!” kick, and I was too exhausted and out of breath to help out except for the little stuff. I was clearing a bookshelf, and Dr. Doris Rapp’s book Is This Your Child? fell onto the floor. I picked it up and was out of breath, so I sat down and skimmed through. I read the page on yeast allergy. I went to mom and said “Look at this; this is our problem!” I’d been reading Mercola fervently for a year and the answer hadn’t clicked. But the single page of Rapp’s book was the first puzzle piece I could do anything with.
So we started on the anti-yeast diet on Thanksgiving Day, and I led the battle. The little bit of energy I had all went into cooking and drill sargeanting my sugar-addicted family. “Don’t feed the yeast colony!” I had an answer to something, and I was going to get to the root of the problem. This diet helped me tremendously. In a few weeks I had read the tome by Dr. William Crook on yeast, and I was cooking every meal, and making everyone take their goldenseal.
In January, I was eighteen, and we finally took a trip to my LLMD’s area. We set up appointments for the whole family. Why not support this nice doc, huh? Most of the family was fine--it was me who had the obvious problem. I have one brother with Lyme as well. We focused on him for a year or so, but he’s not good at following orders. Thankfully there have been some major improvements for him. My mom and the rest of the family were over their yeast problem. I was the one who still had yeast to battle, and mono on top of it. It was there that I learned mono can be chronic.
I’ll never forget that day. My doc looked at me and said, “I don’t know how you do what you do…” I probably just grinned and said something like “Well, I’m Scots-Irish.” He also had to be careful about how to say that I had Lyme. He had to help me get the yeast and mono under control before touching the Lyme, which often is hard to explain to a patient who is eager to get all of this stuff dealt with NOW. That was not the time for Lyme. He just said my joint pain was from a bug bite.
My only question was why ticks seemed to prefer certain people, mosquitoes liked other people, and fleas different people. Ticks liked my brother, and mosquitoes and fleas liked me, and it was a different combination for each family member. He said he didn’t know the answer, and said I could look it up and email him. So I looked everything up, wrote him a little paper citing my sources, and emailed asking for another project because I liked it so much. It turned into an internship one year later!
There is also a really good chiropractor we began seeing. This chiro is great at giving adjustments suited just for what your body needs, and knowing what supplements a person needs. His recommendations for me have been consistently accurate and benefit rich. We had remodeled our kitchen in June, in three weeks. I was suffering badly from the chemicals, loss of sleep, and bad diet induced by the craziness. Then we immediately went on a trip for a week to a place that served what I swear is plastic food. I got back home and felt like I was going to have full-blown mono again. Then the chiro said to use a homeopathic for the yeast, and be sure to continue the homeopathic for the mono as well. In three weeks the yeast and mono were down to being a non-issue.
Not long after I was doing well clearing up the yeast, in early July, we had a French exchange student come and stay with us, and my friend also came for a week. I hadn’t been feeling the best in my abdomen, having those "take you to the floor” type pains. I had one while swimming that didn’t go away. Mom fussed at me for not standing up straight. I hurt so bad I couldn’t stand up straight. I couldn’t stand straight for a week. I continued in pain and had more frequent bouts that felt like they would take me to the floor. One time they did. After that I was standing even more bent. I looked like that shot of Mandy in the Under Our Skin film where she couldn’t stand up straight.
Mom called the chiropractor because at this point she really was worried this could kill me. (Her aunt had died at 16 or so of some “female” disease.) The chiro sent me a homeopathic remedy. After taking that, in a few hours I was standing straight again, and had healing-type pains--mild, pulsating, warm pain. It took a while for my body to get rid of the junk, but the remedy got me there. I think the chiropractor saved me not just from the ER, but likely my life as well.
After that I thought I MUST be well. I was a little offended at first by Schaller’s attitude in his writing on why Lyme treatments fail; but I know he has the right to believe (among many other good things), that we have poor judgment about when we are better. We think improvement = cure, but it doesn't! With each little thing I’ve thought “Ok, I’m cured now! I can live my life.” Thankfully only once did I get truly sick again before realizing my error. I, in my Lymie brain, thought I was cured--still with joint pain and brain fog. I went to spend a week with my friend during her second year of college. It was fun, but proved to me that I was still sick.
I had a couple weeks to recharge from that experience before I saw my LLMD again in August. This is when he told me I had Lyme from the bug bite I must have gotten. The yeast and mono weren’t an issue anymore. We could now focus on “Lyme and Co.” It was really no big deal to me. I just took what he told me to, and was going to see him in January of the next year. I did great on the things he had me start doing. The picture was really simplified; we could address Lyme now.
I went home and didn’t bother with research. I herxed a week after I got home, and wasn’t scared by it. It was like I knew that would happen, and was ok with it. I knew I had this internship coming up. I could ask the doc all my simmering questions then, huh? Despite being told otherwise, I thought I was cured as soon as joint pain and brain fog were down a little bit. I stopped taking stuff in early December. I thought that at nineteen I was done with Lyme. I probably was told something different, but I hadn't listened to that part.
I felt good from September till mid-January, about two weeks into the internship. I even had my first painless menstrual cycle. Then I picked up a virus at the clinic and felt completely wiped out. I didn’t feel bad for long, because they took good care of me. I knew enough about Lyme now that I had to conquer this thing. I did wonderfully, keeping up with the internship and half-herxing most of the time! A couple times it tipped over a little far, but I still didn’t miss a day.
When I say herx, I mean feeling really slow and icky. Thankfully my only big neurological symptom was brain fog, and one herx when I went and lay down after getting home. I cried because I hurt so bad, and my heart gave me pain and skipped a beat. I could muck through that because I’d lived with brain fog and had learned things anyway, for years. By the end of the internship, I was feeling GREAT. I’d come to help others and learn, but God blessed me with good people there, and I got help too. It was truly the great feeling that I had never experienced. That feeling was something I became used to, but I was very thankful for it.
Once I got back to NC, I applied for a job and got it. I began planning for the schooling it takes to get a doctorate in naturopathic medicine from an accredited school.
In a way, Lyme has been God’s way of giving me a definite direction! Always search for Lyme’s hidden gifts, and trust fully in God. Our contentment must be in Jesus if we want to get through this!
I got bitten again in May’09 and was in a 30 mph rear-ender in the same week. I got a rash from that bite. Lyme became a new beast. I continued with my natural stuff and a not-as-perfect diet, and actually did ok (though not like I was before my last tick bite), until October.
It helped just to ask my LLMD what to do, and I went to see a naturopath in June. He also had me on enough to keep the Lyme from attacking badly. I think that stuff would have been more successful if it weren’t for my working in a store and then adding college in the fall semester. I kept the part-time job until mid-terms, but resigned when I was tired of feeling bad every time I went home after work. I hurt so bad, and felt crushed emotionally. I would get home and just cry. I crashed, hard, on finals week. It is a miracle that I left with A’s. I spent the next two weeks in bed.
It has taken a few months, and two more visits to my LLMD, but I know I’m back on track to getting well. I’ve had a few spells of better functioning in school like I did before I got sick last semester. I just got a job. It is something that is a perfect job for a Lymie trying to recover. Being reinfected and having whiplash made Lyme a very different beast, but I’m learning not be afraid of the way it behaves.
Lyme is a journey, and I will get better in God’s perfect will. I know it is possible! This experience will help me better understand patients when I’m a practitioner. So many blessings have come out of it. I think if someone asked me if I had the choice of life as it is now, or life without Lyme, I would choose exactly the life I have.
I'm twenty years old now, and I’m not completely recovered. But I've come a long way.
K. C. Smith, North Carolina
I still loved Bocelli’s music, and I was learning to cook Italian. I loved the whole Italian culture now. Before this I had only cooked stuff that came as a mix in a bag. But I learned I was a good cook and that I enjoyed it, despite the pain in my wrists. They would go numb after enough work. The pain would hit the next day or the day after, but it would be numb for a while so it was well worth it.
We were still making soap. I was having allergic reactions to the artificial fragrances we used to make the soap. We had also put a backyard garden together. Most the plants died that year. We aren’t vegetable gardeners, but I did so much shoveling to make that garden, and I went out there to tend to it. I was the only one who did much gardening. I was hoping that growing our food would be my way to change things.
At eighteen I was sick with my second sinus infection in the fall, a couple weeks after my birthday. Mom was on her annual “Let’s change the kitchen around on Thanksgiving week!” kick, and I was too exhausted and out of breath to help out except for the little stuff. I was clearing a bookshelf, and Dr. Doris Rapp’s book Is This Your Child? fell onto the floor. I picked it up and was out of breath, so I sat down and skimmed through. I read the page on yeast allergy. I went to mom and said “Look at this; this is our problem!” I’d been reading Mercola fervently for a year and the answer hadn’t clicked. But the single page of Rapp’s book was the first puzzle piece I could do anything with.
So we started on the anti-yeast diet on Thanksgiving Day, and I led the battle. The little bit of energy I had all went into cooking and drill sargeanting my sugar-addicted family. “Don’t feed the yeast colony!” I had an answer to something, and I was going to get to the root of the problem. This diet helped me tremendously. In a few weeks I had read the tome by Dr. William Crook on yeast, and I was cooking every meal, and making everyone take their goldenseal.
In January, I was eighteen, and we finally took a trip to my LLMD’s area. We set up appointments for the whole family. Why not support this nice doc, huh? Most of the family was fine--it was me who had the obvious problem. I have one brother with Lyme as well. We focused on him for a year or so, but he’s not good at following orders. Thankfully there have been some major improvements for him. My mom and the rest of the family were over their yeast problem. I was the one who still had yeast to battle, and mono on top of it. It was there that I learned mono can be chronic.
I’ll never forget that day. My doc looked at me and said, “I don’t know how you do what you do…” I probably just grinned and said something like “Well, I’m Scots-Irish.” He also had to be careful about how to say that I had Lyme. He had to help me get the yeast and mono under control before touching the Lyme, which often is hard to explain to a patient who is eager to get all of this stuff dealt with NOW. That was not the time for Lyme. He just said my joint pain was from a bug bite.
My only question was why ticks seemed to prefer certain people, mosquitoes liked other people, and fleas different people. Ticks liked my brother, and mosquitoes and fleas liked me, and it was a different combination for each family member. He said he didn’t know the answer, and said I could look it up and email him. So I looked everything up, wrote him a little paper citing my sources, and emailed asking for another project because I liked it so much. It turned into an internship one year later!
There is also a really good chiropractor we began seeing. This chiro is great at giving adjustments suited just for what your body needs, and knowing what supplements a person needs. His recommendations for me have been consistently accurate and benefit rich. We had remodeled our kitchen in June, in three weeks. I was suffering badly from the chemicals, loss of sleep, and bad diet induced by the craziness. Then we immediately went on a trip for a week to a place that served what I swear is plastic food. I got back home and felt like I was going to have full-blown mono again. Then the chiro said to use a homeopathic for the yeast, and be sure to continue the homeopathic for the mono as well. In three weeks the yeast and mono were down to being a non-issue.
Not long after I was doing well clearing up the yeast, in early July, we had a French exchange student come and stay with us, and my friend also came for a week. I hadn’t been feeling the best in my abdomen, having those "take you to the floor” type pains. I had one while swimming that didn’t go away. Mom fussed at me for not standing up straight. I hurt so bad I couldn’t stand up straight. I couldn’t stand straight for a week. I continued in pain and had more frequent bouts that felt like they would take me to the floor. One time they did. After that I was standing even more bent. I looked like that shot of Mandy in the Under Our Skin film where she couldn’t stand up straight.
Mom called the chiropractor because at this point she really was worried this could kill me. (Her aunt had died at 16 or so of some “female” disease.) The chiro sent me a homeopathic remedy. After taking that, in a few hours I was standing straight again, and had healing-type pains--mild, pulsating, warm pain. It took a while for my body to get rid of the junk, but the remedy got me there. I think the chiropractor saved me not just from the ER, but likely my life as well.
After that I thought I MUST be well. I was a little offended at first by Schaller’s attitude in his writing on why Lyme treatments fail; but I know he has the right to believe (among many other good things), that we have poor judgment about when we are better. We think improvement = cure, but it doesn't! With each little thing I’ve thought “Ok, I’m cured now! I can live my life.” Thankfully only once did I get truly sick again before realizing my error. I, in my Lymie brain, thought I was cured--still with joint pain and brain fog. I went to spend a week with my friend during her second year of college. It was fun, but proved to me that I was still sick.
I had a couple weeks to recharge from that experience before I saw my LLMD again in August. This is when he told me I had Lyme from the bug bite I must have gotten. The yeast and mono weren’t an issue anymore. We could now focus on “Lyme and Co.” It was really no big deal to me. I just took what he told me to, and was going to see him in January of the next year. I did great on the things he had me start doing. The picture was really simplified; we could address Lyme now.
I went home and didn’t bother with research. I herxed a week after I got home, and wasn’t scared by it. It was like I knew that would happen, and was ok with it. I knew I had this internship coming up. I could ask the doc all my simmering questions then, huh? Despite being told otherwise, I thought I was cured as soon as joint pain and brain fog were down a little bit. I stopped taking stuff in early December. I thought that at nineteen I was done with Lyme. I probably was told something different, but I hadn't listened to that part.
I felt good from September till mid-January, about two weeks into the internship. I even had my first painless menstrual cycle. Then I picked up a virus at the clinic and felt completely wiped out. I didn’t feel bad for long, because they took good care of me. I knew enough about Lyme now that I had to conquer this thing. I did wonderfully, keeping up with the internship and half-herxing most of the time! A couple times it tipped over a little far, but I still didn’t miss a day.
When I say herx, I mean feeling really slow and icky. Thankfully my only big neurological symptom was brain fog, and one herx when I went and lay down after getting home. I cried because I hurt so bad, and my heart gave me pain and skipped a beat. I could muck through that because I’d lived with brain fog and had learned things anyway, for years. By the end of the internship, I was feeling GREAT. I’d come to help others and learn, but God blessed me with good people there, and I got help too. It was truly the great feeling that I had never experienced. That feeling was something I became used to, but I was very thankful for it.
Once I got back to NC, I applied for a job and got it. I began planning for the schooling it takes to get a doctorate in naturopathic medicine from an accredited school.
In a way, Lyme has been God’s way of giving me a definite direction! Always search for Lyme’s hidden gifts, and trust fully in God. Our contentment must be in Jesus if we want to get through this!
I got bitten again in May’09 and was in a 30 mph rear-ender in the same week. I got a rash from that bite. Lyme became a new beast. I continued with my natural stuff and a not-as-perfect diet, and actually did ok (though not like I was before my last tick bite), until October.
It helped just to ask my LLMD what to do, and I went to see a naturopath in June. He also had me on enough to keep the Lyme from attacking badly. I think that stuff would have been more successful if it weren’t for my working in a store and then adding college in the fall semester. I kept the part-time job until mid-terms, but resigned when I was tired of feeling bad every time I went home after work. I hurt so bad, and felt crushed emotionally. I would get home and just cry. I crashed, hard, on finals week. It is a miracle that I left with A’s. I spent the next two weeks in bed.
It has taken a few months, and two more visits to my LLMD, but I know I’m back on track to getting well. I’ve had a few spells of better functioning in school like I did before I got sick last semester. I just got a job. It is something that is a perfect job for a Lymie trying to recover. Being reinfected and having whiplash made Lyme a very different beast, but I’m learning not be afraid of the way it behaves.
Lyme is a journey, and I will get better in God’s perfect will. I know it is possible! This experience will help me better understand patients when I’m a practitioner. So many blessings have come out of it. I think if someone asked me if I had the choice of life as it is now, or life without Lyme, I would choose exactly the life I have.
I'm twenty years old now, and I’m not completely recovered. But I've come a long way.
K. C. Smith, North Carolina
Tuesday, July 12, 2011
Lyme's Hidden Gifts--K. C. Smith: Part 1
My Lyme symptoms started when I was nine, but I wasn’t diagnosed until I was eighteen. I believe it takes having the wrong internal environment for Lyme to even set up shop, a degree of a weak immune system to begin with.
At nine I had some lymph nodes in my neck swell up and stay swollen for months. They itched. I couldn’t keep from scratching those lumps under my skin. We went to the pediatrician, and he assured mom it wasn’t cancer and sent us home. I began getting headaches, and was suddenly sensitive to every storm, coming, and going. Mom told me that I must have bad sinuses like she does, along with her sister and her mom. "It's normal; you're just starting into the pain of it a little young."
By the time I was eleven I was having migraine headaches sometimes. We also began making homemade soap with all the artificial, industrial strength fragrances. I was the scent mixer because my whole family knew I smelled everything really well, had good “scent-taste,” and wasn’t at risk of sticking my nose in the oil to smell it. Occasionally it would give me a headache, but not that often. I chugged along, thinking life was normal.
Abdominal pain was a regular thing. I never considered it a problem, just said, “Ow.” Like most kids I was told, “Stop whining.” If your parents don’t think a heartbeat of it, it mustn’t be a problem--right? I was becoming resistant to the Aleve that the pediatrician had told me to take whenever I got a headache. Aleve was the only thing that used to touch it. Tylenol and Ibuprofen didn’t do a thing, and pre-adolescents can't take aspirin. Those headaches were common. I remember crying because they were so bad. The sounds of electronics invariably set them off. As a kid I hated talking on the cell phone, and had no reason that I knew of! I remember always being cold. I was so cold on some days that I would wear sweaters in the middle of summer.
At nine I had some lymph nodes in my neck swell up and stay swollen for months. They itched. I couldn’t keep from scratching those lumps under my skin. We went to the pediatrician, and he assured mom it wasn’t cancer and sent us home. I began getting headaches, and was suddenly sensitive to every storm, coming, and going. Mom told me that I must have bad sinuses like she does, along with her sister and her mom. "It's normal; you're just starting into the pain of it a little young."
By the time I was eleven I was having migraine headaches sometimes. We also began making homemade soap with all the artificial, industrial strength fragrances. I was the scent mixer because my whole family knew I smelled everything really well, had good “scent-taste,” and wasn’t at risk of sticking my nose in the oil to smell it. Occasionally it would give me a headache, but not that often. I chugged along, thinking life was normal.
Abdominal pain was a regular thing. I never considered it a problem, just said, “Ow.” Like most kids I was told, “Stop whining.” If your parents don’t think a heartbeat of it, it mustn’t be a problem--right? I was becoming resistant to the Aleve that the pediatrician had told me to take whenever I got a headache. Aleve was the only thing that used to touch it. Tylenol and Ibuprofen didn’t do a thing, and pre-adolescents can't take aspirin. Those headaches were common. I remember crying because they were so bad. The sounds of electronics invariably set them off. As a kid I hated talking on the cell phone, and had no reason that I knew of! I remember always being cold. I was so cold on some days that I would wear sweaters in the middle of summer.
Friday, July 8, 2011
Be Your Own Advocate--Angela Coulombe
In August of 2007 I had just completed three things on my life’s “to-do list."
1. Kick through a solid 1/2″ piece of pine to obtain my brown belt in Tae Kwon Do
2. Appear on stage in a solo dance performance
3. Run the Beach to Beacon, a 10k race (which I had completed in 54:51.8 wah-hey!)
On top of a full-time job and raising two boys, I’ve always been a bit of an athlete; as a child I did gymnastics, tennis, dance, any sport going. As an adult, I ran, went to gym regularly, attended dance class and participated in TKD three times a week. I’d always been physically fit, cherishing this as my link to sanity and well being.
First Signs of Lyme Disease
The day after completing the Beach to Beacon, Aug. 4th, 2007, the area surrounding my right knee started swelling. Having injured my right knee several years earlier in another running incident, I thought, “No big deal. With a couple weeks of OT and rest, I’ll be fine.” I started therapy but after three weeks the swelling hadn’t gone down. During this time, I also started to notice that my shoulder joints were becoming sore, and it was difficult to sleep on either side due to the shoulder pain.
The OT’s were baffled as to why the swelling in my knee, now very noticeable even through trousers, wasn’t getting better. They scheduled an MRI. The pain in my leg fluctuated from highly uncomfortable to completely unbearable. I had been on Aleve and ibuprofen for weeks without it touching the pain or swelling, and I hoped the MRI would finally pinpoint the problem.
The MRI showed no major injury, just unspecified inflammation. It was now September, and my boys were back in school. At this stage all my joints were sore. To top it off, I seemed to have come down with a stomach bug or some kind of “flu,” as I felt run down, constantly tired, and sick to my stomach. I started to have bad headaches.
The breaking point came one Saturday morning in mid-September. After bed hopping most of the night before, trying to find the best mattress in the house to sleep on, I settled on the bed in the spare room. By this time I could barely sleep for more than an hour at a time at night, needing to roll over to alleviate pain in either my shoulders, back, or hips. The phone rang at 8 am that Saturday morning, I tried to get out of bed to answer it but couldn’t. No matter what I did I could neither push myself up on my elbows to get up, nor swing my legs around to get up. I was in so much pain I had to scream to my husband to come get me up.
Now I knew things were seriously amiss. It was the weekend and I didn’t want to go to the emergency room, so I decided to ride it out until Monday. Then, out of nowhere, a huge, ugly red ring appeared on my upper arm. I had no idea what it was and had never considered Lyme. I knew next to nothing about the disease or how it was transmitted. As I felt my whole body falling apart, I thought, "Geez, what now?"
The Lyme Diagnosis
My primary care physician (PCP) quickly suspected Lyme but wanted to have it confirmed by an infectious disease (ID) specialist and some blood work. When I arrived at the ID doctor’s, he confirmed the initial Lyme diagnosis, told me I’d be absolutely FINE after three weeks on antibiotics, and sent me off with a prescription. Three weeks later I was anything but fine! I was more sick than I’ve ever been in my life and could barely move. I could no longer raise my arms up over my head, dress myself, move my neck or head from side to side. September passed into October. I tried not to dwell on the fact that just two months prior I was a top athlete now reduced to a near invalid.
I phoned my PCP back and explained to her that I thought I needed more antibiotics and described what was going on. She told me I had to go back to the ID doctor as he was the one who diagnosed Lyme and had prescribed the antibiotics. Feeling hopeful that he’d be able to help me, I phoned him. I explained that I felt even worse than before, was more of an invalid than before, and asked what he thought I should do. Then he dropped a bombshell. He said, “What you are experiencing now has nothing to do with Lyme; we all have aches and pains, and you are simply experiencing the effects of old age and arthritis. (I was only 43 and none of my blood work showed anything arthritis-related.) You don’t need anymore antibiotics!” Reeling from the shock of what I had just heard, I tried to explain that I found the arthritis pretty hard to believe, as I was so physically active two months before. Heck, I ran a bleeding 10k race! That was a waste of breath; he had already hung up on me.
I never felt more alone in all the world as I lay on my couch in disbelief and shock, wondering what the heck I was going to do next. I knew my PCP and this guy weren’t going to help me get better, but I had no clue as to how to help myself.
I could go on and on about the pain, misery and fear I went through, how it affected every aspect of my life and the life of my family, but that’s not the point of this project.
By a stroke of pure fate, I was given the name of a doctor who could help me. I started seeing this doctor in mid-November, 2007. In my naivete, I expected to get well in a month--or possibly two--once I started treatment. What I wasn’t prepared for was the long year and a half ahead of me. Suffice to say, it was an interesting journey, filled with ups and downs and interesting discoveries, even things I had to laugh at. Once I was detoxing in a dry sauna and thought, "I must multi-task, saunas are boring. I’ll just read a bit!" I brought a book, The Road to McCarthy, by Pete McCarthy (a truly fantastic book I wholly recommend) into the sauna to read. This copy belonged to my husband. I noticed the book seemed to have some loose pages. It took me a while to comprehend that it was the heat of the sauna melting the binding, causing the book to fall apart. I again had to laugh at my naivete and stupidity!
Hope in the Face of Lyme
My whole purpose in writing this is to give hope, so here is my statement of hope. After going from being incapable of dressing myself or getting upstairs on my own, going through detox strategies, etc., it has now been fourteen weeks that I have been off all Lyme meds. So far so good. I am back to most of my "pre-Lyme” activities--Tae Kwon Do, dancing, and running, my life saver! In fact, I have been training to run the Beach to Beacon again, can run four miles at the same pace I did prior to Lyme (and I’m two years older), and I’m almost running a single mile faster than I have since I started running as an adult!
Deriving Hope and Inspiration
First of all, I just knew the infectious disease doctor was WRONG! How could I have become arthritic to the point of being unable to get out of bed unassisted in the course of a month and a half when none of my blood work showed any signs of rheumatoid arthritis? As an athlete, I knew my body. I knew the difference between a muscle ache and a torn ligament! I knew what was going on wasn’t “old age!” So my hope, the one I clung to during this time, was to prove the ID doctor wrong and to one day run again and participate in the activities I so enjoy.
After receiving prolonged treatment, I was able to return to the gym in February of 2008. I once could curl 20 lbs easily. Now I had problems lifting just 4 lbs for months, but I hung in there because at least I could lift 2 lbs in each hand and saw that as real progress! The encouragement of my family was crucial; every day they saw small improvements and brought these to my attention. Where I once couldn’t squat down to pick up something off the floor, by July of 2008, I could. Though I felt like I couldn’t run again, my curiosity got the better of me and I tried to run a mile on a treadmill in the basement. I ran my first mile in Feb 2008 in--drum roll--45 minutes. (I could have walked it in the same time or maybe faster?)
That alone inspired me to try every day to improve on that time. By March I had the mile down to 35 minutes; by June, I could run it in 10 minutes! Seeing that I could actually regain what I had lost gave me tremendous hope and inspired me to strive to do more. I don’t think I would be where I am today without the support group of people I had not previously met--or might never have met--had it not have been for Lyme bringing me to them.Their selfless sharing and reaching out sustained me throughout. I also clung to the idea that something positive would have to result from this experience. By sharing my story and other people's stories, I hope to give others in my situation a glimmer of hope and educate others about the effects of chronic Lyme.
Life Changes and Modifications
Granted, my present-day well-being has come with a price. I’ve had to modify my lifestyle to maintain this state of well-being. I can no longer have late nights, excessive stress, or “over do” it on a continual basis. I now realize that when I’m tired, I need to rest; when I’m stressed, I need to let go; when things are out of my control, to say “c’est la vie” and let it stand at that. I’m learning to live with Lyme but not let Lyme become my life.
My message of hope to anyone out there is to believe in yourself, trust your instincts, and when in doubt, seek a second opinion. Educate yourself, be your own advocate and above all, don’t settle for a diagnosis you know in your heart is not right.
I have now been off all Lyme meds since April 2009. I’ve celebrated my 45th birthday. My one wish for 2010 is to train for a marathon to raise awareness of long-term Lyme Disease, and how the effects can be managed by long-term treatment.
April 2010
I GOT IN! I’ll be running in the New York City Marathon, November 7, 2010 to raise awareness about long term Lyme Disease. I have never run more than ten miles in my life, so this should be exciting, but someone has to do it!
Update, November 2010
I DID IT! Follow me on Twitter http://www.twitter.com/lymerunner or http://www.lymerunner.com/ for more details of my marathon experience.
Angela Coulombe, Maine
Tuesday, July 5, 2011
Stymied--Annie
The first time I thought I had Lyme Disease was in September of 2007. My family and I had come home from our final outing to our camp in Tunbridge, Vermont. We had just passed papers, and the new owners let us stay at camp that night since we also went to the Tunbridge Fair. We slept on the floor on air mattresses and I remember waking up with a sore eye. This was not unusual since I had been having eye infections on and off for a couple of years. The day after we got home was Sunday; my eye looked worse. I felt like I was coming down with something. By nightime I felt okay, but my eye was worse and my other eye was starting to turn red too.
On Monday, September 17, my eyes were worse so I made an appointment to see my PCP. She was out of town but I did get a substitute doctor, which was encouraging, since I am not crazy about my PCP.
The doctor wasn't sure, but felt the eye problem was viral since there was no pus. I also discussed the off-and-on bouts of diarrhea I had during the summer months of 2006 and 2007. We though it might be gall bladder related since it didn't have the characteristics of IBS. I went to my optometrist and he thought I had a viral episcleritis infection. He told me to use hot compresses on my eyes. Ironically, he had spent several years fighting Lyme disease.
That night I got ready for bed and noticed my right heel was sore as if I banged it or something. By next morning both my heels hurt. Throughout the day things went from bad to worse as the pain spread thoughout my feet and toes, up my leg to my knees. My ankles were very swollen and felt sprained. I also had a weird rash and bright red skin covering the tops of my feet.
The doctor wasn't sure, but felt the eye problem was viral since there was no pus. I also discussed the off-and-on bouts of diarrhea I had during the summer months of 2006 and 2007. We though it might be gall bladder related since it didn't have the characteristics of IBS. I went to my optometrist and he thought I had a viral episcleritis infection. He told me to use hot compresses on my eyes. Ironically, he had spent several years fighting Lyme disease.
That night I got ready for bed and noticed my right heel was sore as if I banged it or something. By next morning both my heels hurt. Throughout the day things went from bad to worse as the pain spread thoughout my feet and toes, up my leg to my knees. My ankles were very swollen and felt sprained. I also had a weird rash and bright red skin covering the tops of my feet.
Friday, July 1, 2011
Living on Prayer and Team Work--Jessica Sundeen
My name is Jessica Sundeen. I am 29 years old and a single mom of three wonderful children. I've been suffering from Lyme Disease and Bartonella for almost nine years.
I was finally diagnosed in September 2007 after seeing numerous doctors, neurologists, chiropractors, physical and massage therapists, and several E.R. visits. Through all of these consultations, I was prescribed numerous medications that were harmful and unnecessary, and was diagnosed with many disorders that were not valid.
I moved to Grand Rapids in August '07, and I couldn't bear the symptoms anymore. I couldn't get out of bed. I couldn't get on the floor to change my son's diaper. I knew I had to take care of my children, so I worked full-time as a Pharmacy Technician. I finally got the answer to my problems in September, though I didn't know what the future was going to be like. I thought I could just take the antibiotics and be cured. I was wrong.
The last years have been a nightmare. I'm still scared of the unknown. I've had numerous doctor visits, spinal taps, blood patches, blood work, brain images, trips to the E.R. and operating room, hospitalizations, PIC lines and Hickman ports. I've had comas, stroke, dementia, terrible fatigue, seizures, tremors, heart palpitations, Bell's Palsy, joint pain, muscle pain, tremors, migraines, elevated temperature, neck pain, back pain, tingling, numbness, stabbing pains, anxiety, buzzing in my ears, vertigo, ear pain, and fainting.
I was finally diagnosed in September 2007 after seeing numerous doctors, neurologists, chiropractors, physical and massage therapists, and several E.R. visits. Through all of these consultations, I was prescribed numerous medications that were harmful and unnecessary, and was diagnosed with many disorders that were not valid.
I moved to Grand Rapids in August '07, and I couldn't bear the symptoms anymore. I couldn't get out of bed. I couldn't get on the floor to change my son's diaper. I knew I had to take care of my children, so I worked full-time as a Pharmacy Technician. I finally got the answer to my problems in September, though I didn't know what the future was going to be like. I thought I could just take the antibiotics and be cured. I was wrong.
The last years have been a nightmare. I'm still scared of the unknown. I've had numerous doctor visits, spinal taps, blood patches, blood work, brain images, trips to the E.R. and operating room, hospitalizations, PIC lines and Hickman ports. I've had comas, stroke, dementia, terrible fatigue, seizures, tremors, heart palpitations, Bell's Palsy, joint pain, muscle pain, tremors, migraines, elevated temperature, neck pain, back pain, tingling, numbness, stabbing pains, anxiety, buzzing in my ears, vertigo, ear pain, and fainting.
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