Right now, there are thousands of people right here in the U.S. of A. who are being misdiagnosed and poisoned. They complain of chronic fatigue, allergies, arthritis, dizziness, depression, irritable bowel syndrome and more, and doctors are putting them on pain meds, anti-depressants, and turning them away without further investigation.
Why, oh, why is this happening? Shouldn't a doctor want to get to the bottom of their patient's health? Personally, I'm not satisfied until I solve a problem, no matter what I'm dealing with in my life. If you asked my friends, they'd tell you I've vary between "detective" mode and "teacher", always seeking knowledge and solutions, with a sense of obligation to share this info with everyone. So if I were a doctor by trade, I'd do the same for my patients.
My Personal Creed
1. Educate Self
2. Investigate
3. Draft Plan of Action
4. Apply Plan
5. Review/Alter Plan if Necessary
6. Inform Public
But I stereotype, speaking only of the majority of doctors. It's also our responsibility as patient to find the doctors who look at the body holistically (as a whole system that is related, not defined by individual parts) when we're dealing with massive, chronic illness. And I, for one, hadn't learned this yet as I hopped from doctor to doctor over the last 20 years.
As a result, I had allergists focusing only on my allergies--quick to point blame at my cats, my pillows, my yard--and gastroenterologists looking only at my stomach for disease or deformity. At one time, I thought primary care physicians, who tout a wealth of general knowledge of wellness, would be able to put the pieces together surrounding illnesses in different organs and systems in my body, but every single one of them chalked it up to stress or hypochondria instead.
I'm not anti-Western-medicine, but I believe it's broken. Just as soon as doctors become more interested in filling their patients with daily regimens of symptom-relieving drugs than curing the illness, we may as well all give up. Likewise, I don't think nutrition or herbs are enough alone. While maintaining a healthy diet and taking immune-boosting supplements is indeed important for maintaining health, that regimen alone isn't going to cure diseases like cancer, AIDS, viruses, bacteria, parasites, and Lyme disease.
Along my journey towards wellness, I read books about my conditions. And more books. And more books. Books about the dangers of sugar, balancing hormones, adrenal fatigue, candida and yeast, anxiety disorders, chemical sensitivities, gluten intolerance, dairy intolerance, nutrition, exercise, meditation, the Western diet, and more. As a single woman in her 20s, far removed from family and truly independent--albeit struggling every moment--it was all I could do to educate myself when nobody was helping.
As a result of all my reading, I've acquired a wealth of knowledge, some of which doctors would dispute. It's not to say I know more than them--I can tell you straight up that my chemistry and bio skills are subpar at best. They did spend years in med school, so they're a leg (or a whole body) ahead of me. But doctors don't talk to their patients about the ways our popular American diets are causing disease. (For instance, coffee and soda are destroying our adrenal glands, thyroid glands, and stomach lining.) And doctors aren't taking note of the relationships between our various systems.
I guess it's a sort-of take on the Butterfly Effect, but I staunchly believe that everything in our body is a unified and connected system, and everything affects everything. Your severe menstrual cramps aren't a separate problem from your allergies. Your goiter isn't unrelated to your irritable bowel. Your arthritis and joint swelling is certainly not independent from your migraines. It goes on and on.
But many of us end up addicted to pain pills, anxiety pills, antacids, and more. Curing the disease can actually stop the pain, anxiety and heartburn. Imagine no longer needing your pills.
Doctors, listen up! Listen to your patients, pinpoint the problem, then cure it!
I believe we are vastly under-diagnosed. Lyme disease is growing at epidemic proportions, and you needn't have even had a tick bite to be infected. There's new evidence that mosquitoes and fleas carry it, mothers pass it to their fetuses, blood transfusions have infected some, and sexual activity can even pass it along. Saying "I've never had a tick on me" is no longer credible defense against Lyme. Besides, you may have had a tick on you for a few hours and never seen it before it fell off.
If anybody reading this suffers from chronic illness such as fatigue, weakness, a sensitive stomach, fibromyalgia, allergies, anxiety and other illnesses, I highly recommend you find a Lyme-literate doctor (LLMD) in your area. Seeing just any doctor, unfortunately, isn't going to cut it. Medical school is still way behind on what's current, and since chronic Lyme is still relatively new, I'm guessing it's not a standard course being taught--or taught at all--in med school. Boy do I hope that changes soon.
I've known for 20 years there was something still undetected that was attacking my body. It's not just Lyme disease but a host of other chronic viruses, bacteria and likely parasites (awaiting confirmation on the latter).
While doctors can be helpful--and even life-saving--my advice to anyone suffering would be not to take your doctor's word as truth or fact. Trust yourself. You know if something isn't adding up. You know your own body much better than any doctor does. If what he/she is saying doesn't sit well with you, you're probably right.
Saturday, January 29, 2011
Tuesday, January 25, 2011
Timeline of Symptoms (Historical)
I was only this month diagnosed with chronic Lyme and able to connect it to my history of chronic illness, which I will detail in chronological order below.
There were many stomach aches to be experienced in my childhood. Since we traveled overseas often--spending days or weeks in places like Syria, Morocco, Germany, Italy, Greece, Turkey, Mexico, and Peru--I picked up the "traveler's bug" during every trip. Bouts of vomiting, fevers, chills, weakness, diarrhea, headaches and overall malaise occupied these trips. Maybe we weren't as sanitary as we should have been, for I ate ice cream off street carts and tacos off trucks, rode and pet camels and donkeys, drank water from fountains that flowed through industrial third-world cities, used toilets that were holes in the ground with no sinks for hand-washing....... you get the idea.
Sure, I was lucky to have experiences that very few do. I'm grateful for the fantastic memories I made during the travels, the cultural and educational experiences, and the overall privilege bestowed upon me, but I don't think I'd be exaggerating to say that some of the illnesses left me with a case of PTSD. (However, since PTSD is psychological and neurological, I plan to discuss that at more depth later.)
A large part of me thinks I'm infected with parasites from these travels decades ago, or what I've come to learn are termed "co-infections" when one has chronic Lyme. Since I have never been tested for parasites, I plan to add this to my priority list: Get tested for parasitic infections. (Update--2012: I'm a host to six types of parasites.)
Back to the topic at hand. My last blog entry left off with the early demise of my health starting around 1st or 2nd grade. Nausea. Upset stomach. Crying spells. Cravings for sugar and simple starches. No appetite for healthy foods. An underweight, malnourished body.
I would have forgotten just how weak and frail my state was in elementary school, if it weren't for the memories of P.E. class. Thank you, P.E., for reminding me how much I hated you! Since my endurance never improved (even through high school), and since I almost always came in last--even behind the obese kids--I started to see the P.E. teachers as evil-doers who just shook their heads and fists at me. To them, I was just be lazy and unmotivated... they couldn't possibly fathom that making me run for a mile was the most painful form of torture my childlike brain could imagine, leaving me sore and sick for days afterwards.
When my stomach aches didn't go away with time, a doctor finally suggested, at the start of my 5th grade year, that I have a scope performed on my stomach. When the results showed I had acid reflux, I started a daily regimen of acid reflux medications that would only make me sicker. The stomach aches persisted and worsened, to the point at which I was taking Reglan (an anti-emetic) as often as I could. Rarely did I actually vomit, unless we were traveling, but mostly I worried, panicked, that I might vomit.
One morning during mass at my 5th grade Christian school, I experienced my first panic attack. Seated mid-row, tucked tightly in from both sides, I was suddenly gripped with a simultaneous sense of terror and nausea. There was no time for thinking--every ounce of me just had to get out of that pew and to a rest room immediately! My heart was racing so fast I thought it would explode. I ran like the wind all the way to the rest room, sat on the toilet, cried, and... didn't get sick. No vomiting, no gastrointestinal symptoms. Just a sense of defeat and... relief.
I wouldn't have another panic attack for six more years, but they'd be back with a vengeance.
The stomach aches dragged on and on, coming and going at random times like the unpredictability of Texas storms. And then came another storm--or at least it bears quite an uncanny resemblance to a downpour: In 7th grade, I experienced a nasal "allergy" that has never stopped. In case you missed the weight of that statement, allow me to rephrase it: In 7th grade, my sinuses flared up, started to overproduce mucus, and I signed away my life to the makers of Kleenex. I haven't gone anywhere since then without a stash of tissues on my body. Not a day has passed that I haven't woken with the need to blow my nose and fallen asleep with a tissue in my hand.
Allergy testing showed I was allergic to a host of common pollutants that are inescapable lest you live in a cave. My life became prescription allergy pills, nasal sprays, and weekly allergy shots. But in spite of all the medication, my allergies continued to worsen.
8th grade was particularly brutal. My classmates were vicious, cruel, tormenting me as often as they could with comments about my nose-blowing. More tolerant students were simply inquisitive, wanting to know if I'd seen a doctor and suggesting a certain allergy remedy. Every sniffle I made in class filled me with embarrassment and shame.
By ninth grade, I still hadn't started my first period, and still weighed about 80 pounds.
After two years on allergy shots and pills with no improvement (not to mention hypo-allergenic bed casing and carpet cleaner), my mother took me to an Ear/Nose/Throat doctor, who performed a CT-scan which showed sinusitis and suggested sinus surgery as the solution. Ecstatic when he told me I would experience a 75% improvement in my sinus symptoms, I felt a huge weight lifted off me. The summer between 9th and 10th grade (which is when, incidentally, I finally hit puberty), I had endoscopic sinus surgery.
Except for a near-fatal post-op incident in which I blew open fresh stitches in my sinuses, causing a gush of blood to pour out my sinuses and mouth, and ending with my vomiting clots of blood and falling unconscious on the hospital floor, the surgery really didn't do anything for me. Once I healed from it, I blew my nose just as often as before. And so ended junior high school.
No doctor ever suggested I be tested for chronic viruses, bacterial infections, parasites, or immune system disorders, all of which can cause respiratory problems, excessive phlegm production and allergies; the fact that allergists and sinus doctors don't test for these things when a when patients show no improvement or response to treatment is more than baffling--it is highly disturbing.
I started high school with a big, bad attitude and a distrust of everyone. Refusing to smile for cameras, pictures from that era paint me to be as distraught as I truly felt inside. I wasn't a cool kid in school and didn't have a boyfriend, eventually gravitating toward the darker, quieter and more artistically expressive crowd of students. Forced by my mother into therapy, I found myself communicating with someone who seemed more patronizing than professional and clueless about how it felt to be me. Therapy didn't last long. Poetry became a huge escape for me, which later in high school turned into lyrics and songwriting.
Throughout high school, I experienced a host of maladies: PMS brought about severe cramps that rendered me in a fetal position, and sleep evaded me at night. I constantly craved sugar, and my mind would never shut off. Anxiety started to grip my every moment. The anxiety led to OCD-type behaviors, which included constantly chewing the insides of my cheeks and lips until they bled, picking at pimples on my back and upper arms, picking at split ends on my hair, and feeling the need to be writing or drawing to keep my hands from going idle. At night, I would twirl my toes in bed and couldn't escape the feeling of something crawling under my skin.
At 16, I was stricken with a phobia that would absolutely change my life forever. When I tell you I developed "emetophobia", a fear of vomiting in public, you might blow it off as trivial. However, emetophobia led me to start to see all food as toxic poison that would certainly make me sick and vulnerable, revealing how deeply, deeply insecure I was. I would visualize food as vomit and force myself to swallow my meals just to keep myself alive. Contrary to what many people thought, I didn't actually want to die, and I was never anorexic or bulimic (despite numerous accusations that I was); I just feared that everything I ate would make me vomit, and it became an obsession for several years that during that time never escaped me for a moment.
Panic attacks started to take place any time I felt a sense of being trapped somewhere I might throw up without having time to escape to perform the act in privacy. Although I never threw up, I absolutely had to sit in aisle seats or near doorways, and rode elevators and buses in a state of full-blown terror and drenched in sweat. Please, please don't throw up, I would beg myself.
Still not knowing I had emetophobia (I wouldn't learn the name for this until college), and completely unaware that it was a psychological disorder, I had two more scopes performed on my stomach, in addition to a barium x-ray and a gastroparesis test (to detect slow digestion, a disorder which can cause food to putrify in the stomach). With every stomach test that came back normal, I sunk into a deeper depression.
Also during high school, I started having sharp, stabbing chest pains that were random in nature, occurring separately from anxiety attacks or physical exertion. Off I went to a cardiologist, who performed a stress test, only to show--shockingly (not!)--that my heart was fine.
Between ages 16 and 18, I traveled to France, Syria, Lebanon, Peru, Argentina, Mexico, and Italy, and nearly killed myself from the stress. Furthermore, being so malnourished and chronically tired and weak, I was belittled by family/companions for struggling to trek through Macchu Picchu, climb the Sacre Coure steps, or hike the Cinque Terre trail. It's not to say I didn't try, for I attempted and barely completed each of the above, but I paid the physical and emotional price.
On one particular transatlantic flight between Paris and the U.S., I remember when the "fasten seat belt" light came on, I was convinced that, between my fear of heights/flying and my fear of vomiting in public, I would have a heart attack. I locked myself in the airplane bathroom and proceeded to squeeze open every pore and hair follicle on my body, including my face. An hour later, I emerged from the bathroom, exhausted, embarrassed, my face bleeding and broken out, and cried in my seat until we landed.
Salvation from this insanity arrived in the form of Celexa freshman year in college. (Celexa would soon evolve to Paxil, then to Lexapro and eventually Cymbalta.) A university psychiatrist helped me realize that my neurosis was an imbalance of brain chemicals, and this presciption would help to keep seratonin active longer in my brain. While the medications do not actually add seratonin or increase brain seratonin levels, they do improve the communication of neurotransmitters and make the seratonin more active.
Blood tests recently performed by my doctor show that my brain seratonin levels are so low they are below the minimum reading that can be detected in the lab, which is less than half the minimum spec for healthy adults. This is likely also caused by Lyme. I plan to devote an entire upcoming entry alone on neurological lyme, a.k.a. neuroborreliosis, but in short: when Lyme reaches a later stage and gets in the spinal fluid, it causes the brain to literally swell up, fill with lesions, misfire synapses, and cause symptoms like vicious anxiety attacks and obsessive compulsions.
In my 20s, my emetophobia has taken a back-burner to the chronic fatigue (CFS) and respiratory issues. I haven't really experienced any new symptoms, just a composite of everything from my childhood, compounded by an immune system that's very, very slow to recover from illness. For instance, what start as simple colds become sinusitis or bronchitis that last several months, requiring steroids and antibiotics to cure. If I sleep under eight hours, I almost undoubtedly become ill.
More than that, the fatigue and weakness are the most intrusive of the active life I desire. Already feeling the effects of limited mobility, such as an inability to stand on my two feet for more than five minutes, I fear what this means for my future. But I'm hopeful that treatment for Lyme and Hashimoto's will provide real relief in this department, with a major goal being development of physical endurance. People just don't understand how hard it is to "just exercise more" when you're plagued with Lyme, diseased thyroid, candida, low blood cells (no immunity), and chronic infections like EBV and pneumonia. Then again, until two weeks ago, nobody (including me) knew I had any of these diseases, so it was easy to assume I could just exercise myself strong. Trust me, I've tried, even with the help of a personal trainer.
I hate to say it (well, not really), but doctors have been pretty much useless--except for my current Lyme doctor. Every primary doctor, immunologist, disease specialist, and more have dismissed me as a hypochondriac the minute I start to rattle off my symptoms. Even the three endocrinologists I've seen as an adult haven't tested my thyroid antibodies to confirm Hashimoto's. In fact, one endocrinologist noted that I had gone from a borderline hypothyroid state to a fully hyperthyroid state and back again, and didn't suggest anything was wrong, noting that my thyroid was just "self-regulating". Amazing!
The worst doctors were the ones that told me to my face I was lying, making it all up. Then there are the friends, teachers, boyfriends and others who have said far worse--but I reserve the "relationship" blog entry for a future date. (I also look forward to writing about my strange, eccentric and socially-isolating behaviors.)
It's incredibly relieving to know legitimate diseases are responsible for 23 years of chronic illness. Most interesting is the allegation by my Lyme doctor that chronic Lyme may have actually caused my Hashimoto's and candida. While I'm certainly angry that nobody detected any of these illnesses in the myriad tests performed on me, the relief of knowing, well, trumps the anger. I'm ready to start treatment (and I'm one week from starting! Can't start till the fifth of Feb). I'm ready to be well! What a novel idea!
Once I start treatment, I'll document my experience undergoing treatment of antibiotics, anti-virals, anti-fungals, herbs and immune boosting supplements. I've done my homework and I know to expect a Herx reaction, so I'm going to turn here for support when the Herxing gets really bad :-)
Thanks everybody for reading my blog, Lyme sufferers and non-Lyme sufferers alike. May the healing begin for the ill, and may the knowledge begin for the uninformed........
There were many stomach aches to be experienced in my childhood. Since we traveled overseas often--spending days or weeks in places like Syria, Morocco, Germany, Italy, Greece, Turkey, Mexico, and Peru--I picked up the "traveler's bug" during every trip. Bouts of vomiting, fevers, chills, weakness, diarrhea, headaches and overall malaise occupied these trips. Maybe we weren't as sanitary as we should have been, for I ate ice cream off street carts and tacos off trucks, rode and pet camels and donkeys, drank water from fountains that flowed through industrial third-world cities, used toilets that were holes in the ground with no sinks for hand-washing....... you get the idea.
Sure, I was lucky to have experiences that very few do. I'm grateful for the fantastic memories I made during the travels, the cultural and educational experiences, and the overall privilege bestowed upon me, but I don't think I'd be exaggerating to say that some of the illnesses left me with a case of PTSD. (However, since PTSD is psychological and neurological, I plan to discuss that at more depth later.)
A large part of me thinks I'm infected with parasites from these travels decades ago, or what I've come to learn are termed "co-infections" when one has chronic Lyme. Since I have never been tested for parasites, I plan to add this to my priority list: Get tested for parasitic infections. (Update--2012: I'm a host to six types of parasites.)
Back to the topic at hand. My last blog entry left off with the early demise of my health starting around 1st or 2nd grade. Nausea. Upset stomach. Crying spells. Cravings for sugar and simple starches. No appetite for healthy foods. An underweight, malnourished body.
I would have forgotten just how weak and frail my state was in elementary school, if it weren't for the memories of P.E. class. Thank you, P.E., for reminding me how much I hated you! Since my endurance never improved (even through high school), and since I almost always came in last--even behind the obese kids--I started to see the P.E. teachers as evil-doers who just shook their heads and fists at me. To them, I was just be lazy and unmotivated... they couldn't possibly fathom that making me run for a mile was the most painful form of torture my childlike brain could imagine, leaving me sore and sick for days afterwards.
When my stomach aches didn't go away with time, a doctor finally suggested, at the start of my 5th grade year, that I have a scope performed on my stomach. When the results showed I had acid reflux, I started a daily regimen of acid reflux medications that would only make me sicker. The stomach aches persisted and worsened, to the point at which I was taking Reglan (an anti-emetic) as often as I could. Rarely did I actually vomit, unless we were traveling, but mostly I worried, panicked, that I might vomit.
One morning during mass at my 5th grade Christian school, I experienced my first panic attack. Seated mid-row, tucked tightly in from both sides, I was suddenly gripped with a simultaneous sense of terror and nausea. There was no time for thinking--every ounce of me just had to get out of that pew and to a rest room immediately! My heart was racing so fast I thought it would explode. I ran like the wind all the way to the rest room, sat on the toilet, cried, and... didn't get sick. No vomiting, no gastrointestinal symptoms. Just a sense of defeat and... relief.
I wouldn't have another panic attack for six more years, but they'd be back with a vengeance.
The stomach aches dragged on and on, coming and going at random times like the unpredictability of Texas storms. And then came another storm--or at least it bears quite an uncanny resemblance to a downpour: In 7th grade, I experienced a nasal "allergy" that has never stopped. In case you missed the weight of that statement, allow me to rephrase it: In 7th grade, my sinuses flared up, started to overproduce mucus, and I signed away my life to the makers of Kleenex. I haven't gone anywhere since then without a stash of tissues on my body. Not a day has passed that I haven't woken with the need to blow my nose and fallen asleep with a tissue in my hand.
Allergy testing showed I was allergic to a host of common pollutants that are inescapable lest you live in a cave. My life became prescription allergy pills, nasal sprays, and weekly allergy shots. But in spite of all the medication, my allergies continued to worsen.
8th grade was particularly brutal. My classmates were vicious, cruel, tormenting me as often as they could with comments about my nose-blowing. More tolerant students were simply inquisitive, wanting to know if I'd seen a doctor and suggesting a certain allergy remedy. Every sniffle I made in class filled me with embarrassment and shame.
By ninth grade, I still hadn't started my first period, and still weighed about 80 pounds.
After two years on allergy shots and pills with no improvement (not to mention hypo-allergenic bed casing and carpet cleaner), my mother took me to an Ear/Nose/Throat doctor, who performed a CT-scan which showed sinusitis and suggested sinus surgery as the solution. Ecstatic when he told me I would experience a 75% improvement in my sinus symptoms, I felt a huge weight lifted off me. The summer between 9th and 10th grade (which is when, incidentally, I finally hit puberty), I had endoscopic sinus surgery.
Except for a near-fatal post-op incident in which I blew open fresh stitches in my sinuses, causing a gush of blood to pour out my sinuses and mouth, and ending with my vomiting clots of blood and falling unconscious on the hospital floor, the surgery really didn't do anything for me. Once I healed from it, I blew my nose just as often as before. And so ended junior high school.
No doctor ever suggested I be tested for chronic viruses, bacterial infections, parasites, or immune system disorders, all of which can cause respiratory problems, excessive phlegm production and allergies; the fact that allergists and sinus doctors don't test for these things when a when patients show no improvement or response to treatment is more than baffling--it is highly disturbing.
I started high school with a big, bad attitude and a distrust of everyone. Refusing to smile for cameras, pictures from that era paint me to be as distraught as I truly felt inside. I wasn't a cool kid in school and didn't have a boyfriend, eventually gravitating toward the darker, quieter and more artistically expressive crowd of students. Forced by my mother into therapy, I found myself communicating with someone who seemed more patronizing than professional and clueless about how it felt to be me. Therapy didn't last long. Poetry became a huge escape for me, which later in high school turned into lyrics and songwriting.
Throughout high school, I experienced a host of maladies: PMS brought about severe cramps that rendered me in a fetal position, and sleep evaded me at night. I constantly craved sugar, and my mind would never shut off. Anxiety started to grip my every moment. The anxiety led to OCD-type behaviors, which included constantly chewing the insides of my cheeks and lips until they bled, picking at pimples on my back and upper arms, picking at split ends on my hair, and feeling the need to be writing or drawing to keep my hands from going idle. At night, I would twirl my toes in bed and couldn't escape the feeling of something crawling under my skin.
At 16, I was stricken with a phobia that would absolutely change my life forever. When I tell you I developed "emetophobia", a fear of vomiting in public, you might blow it off as trivial. However, emetophobia led me to start to see all food as toxic poison that would certainly make me sick and vulnerable, revealing how deeply, deeply insecure I was. I would visualize food as vomit and force myself to swallow my meals just to keep myself alive. Contrary to what many people thought, I didn't actually want to die, and I was never anorexic or bulimic (despite numerous accusations that I was); I just feared that everything I ate would make me vomit, and it became an obsession for several years that during that time never escaped me for a moment.
Panic attacks started to take place any time I felt a sense of being trapped somewhere I might throw up without having time to escape to perform the act in privacy. Although I never threw up, I absolutely had to sit in aisle seats or near doorways, and rode elevators and buses in a state of full-blown terror and drenched in sweat. Please, please don't throw up, I would beg myself.
Still not knowing I had emetophobia (I wouldn't learn the name for this until college), and completely unaware that it was a psychological disorder, I had two more scopes performed on my stomach, in addition to a barium x-ray and a gastroparesis test (to detect slow digestion, a disorder which can cause food to putrify in the stomach). With every stomach test that came back normal, I sunk into a deeper depression.
Also during high school, I started having sharp, stabbing chest pains that were random in nature, occurring separately from anxiety attacks or physical exertion. Off I went to a cardiologist, who performed a stress test, only to show--shockingly (not!)--that my heart was fine.
Between ages 16 and 18, I traveled to France, Syria, Lebanon, Peru, Argentina, Mexico, and Italy, and nearly killed myself from the stress. Furthermore, being so malnourished and chronically tired and weak, I was belittled by family/companions for struggling to trek through Macchu Picchu, climb the Sacre Coure steps, or hike the Cinque Terre trail. It's not to say I didn't try, for I attempted and barely completed each of the above, but I paid the physical and emotional price.
On one particular transatlantic flight between Paris and the U.S., I remember when the "fasten seat belt" light came on, I was convinced that, between my fear of heights/flying and my fear of vomiting in public, I would have a heart attack. I locked myself in the airplane bathroom and proceeded to squeeze open every pore and hair follicle on my body, including my face. An hour later, I emerged from the bathroom, exhausted, embarrassed, my face bleeding and broken out, and cried in my seat until we landed.
Salvation from this insanity arrived in the form of Celexa freshman year in college. (Celexa would soon evolve to Paxil, then to Lexapro and eventually Cymbalta.) A university psychiatrist helped me realize that my neurosis was an imbalance of brain chemicals, and this presciption would help to keep seratonin active longer in my brain. While the medications do not actually add seratonin or increase brain seratonin levels, they do improve the communication of neurotransmitters and make the seratonin more active.
Blood tests recently performed by my doctor show that my brain seratonin levels are so low they are below the minimum reading that can be detected in the lab, which is less than half the minimum spec for healthy adults. This is likely also caused by Lyme. I plan to devote an entire upcoming entry alone on neurological lyme, a.k.a. neuroborreliosis, but in short: when Lyme reaches a later stage and gets in the spinal fluid, it causes the brain to literally swell up, fill with lesions, misfire synapses, and cause symptoms like vicious anxiety attacks and obsessive compulsions.
In my 20s, my emetophobia has taken a back-burner to the chronic fatigue (CFS) and respiratory issues. I haven't really experienced any new symptoms, just a composite of everything from my childhood, compounded by an immune system that's very, very slow to recover from illness. For instance, what start as simple colds become sinusitis or bronchitis that last several months, requiring steroids and antibiotics to cure. If I sleep under eight hours, I almost undoubtedly become ill.
More than that, the fatigue and weakness are the most intrusive of the active life I desire. Already feeling the effects of limited mobility, such as an inability to stand on my two feet for more than five minutes, I fear what this means for my future. But I'm hopeful that treatment for Lyme and Hashimoto's will provide real relief in this department, with a major goal being development of physical endurance. People just don't understand how hard it is to "just exercise more" when you're plagued with Lyme, diseased thyroid, candida, low blood cells (no immunity), and chronic infections like EBV and pneumonia. Then again, until two weeks ago, nobody (including me) knew I had any of these diseases, so it was easy to assume I could just exercise myself strong. Trust me, I've tried, even with the help of a personal trainer.
I hate to say it (well, not really), but doctors have been pretty much useless--except for my current Lyme doctor. Every primary doctor, immunologist, disease specialist, and more have dismissed me as a hypochondriac the minute I start to rattle off my symptoms. Even the three endocrinologists I've seen as an adult haven't tested my thyroid antibodies to confirm Hashimoto's. In fact, one endocrinologist noted that I had gone from a borderline hypothyroid state to a fully hyperthyroid state and back again, and didn't suggest anything was wrong, noting that my thyroid was just "self-regulating". Amazing!
The worst doctors were the ones that told me to my face I was lying, making it all up. Then there are the friends, teachers, boyfriends and others who have said far worse--but I reserve the "relationship" blog entry for a future date. (I also look forward to writing about my strange, eccentric and socially-isolating behaviors.)
It's incredibly relieving to know legitimate diseases are responsible for 23 years of chronic illness. Most interesting is the allegation by my Lyme doctor that chronic Lyme may have actually caused my Hashimoto's and candida. While I'm certainly angry that nobody detected any of these illnesses in the myriad tests performed on me, the relief of knowing, well, trumps the anger. I'm ready to start treatment (and I'm one week from starting! Can't start till the fifth of Feb). I'm ready to be well! What a novel idea!
Once I start treatment, I'll document my experience undergoing treatment of antibiotics, anti-virals, anti-fungals, herbs and immune boosting supplements. I've done my homework and I know to expect a Herx reaction, so I'm going to turn here for support when the Herxing gets really bad :-)
Thanks everybody for reading my blog, Lyme sufferers and non-Lyme sufferers alike. May the healing begin for the ill, and may the knowledge begin for the uninformed........
How I Was Infected
"I've never been healthy." I've heard myself say that both aloud and as a fleeting internal thought, and while it often feels that way, the truth is, it's not entirely accurate.
Born weighing 9 lbs at completion of a full-term pregnancy, breast-fed as a baby and a typically cheerful, excitable toddler, I was the picture of health. Saudi Arabia was home from birth until age five, when we returned to the United States. Unusually enough, I do recall many wonderful things about those early years in Saudi, most memories taking place between ages three and five. Memories like running giddily along the seashore in the hot sun, sliding down the slide at the playground, nursery school lessons, my dolls, puzzles, favorite movies, neighboring cats, my bedroom, and other fun things. Nothing from Saudi stands out as particularly negative or scarring. (Ok, that's not true, either. I remember freaking out when my mom took my pacifier away for the last time).
Assimilating into kindergarten in Dallas, Texas, in 1987 wasn't easy. The bad memories start almost right after--but more like a year after--we got to the U.S. In first or second grade, I remember a lot of things changing for the worse, and blaming most of it on the traumatic effects of tearing a young child away from her home. Sure, I missed Saudi Arabia, but was the psychological burden responsible for a torrent of new physical ailments? Around age 6 or 7 (pinning down the exact age isn't easy), I went from a healthy weight--and a voracious appetite for food--to a suddenly scrawny, bony child who picked at grains of rice and desired little of what she was fed. Not only did I wither into a skeletal frame, that's when the weakness first set in. The frail, easily exhausted child, who desired mostly sugary snacks but scoffed at healthy meals.
What had happened?
Let's back up and try to get the timeline pinned down. (It's something I've been trying to do ever since my Lyme diagnosis.) Okay. We arrived in Dallas New Years Eve 1986/87. I started kindergarten in January 1987. The first year, I did alright, maintaining my body frame, making new friends, and flourishing at all the excitement of newness.
Sometime in the summer of 1988, my grandfather took me, my sister and my brother camping in rural, southern Missouri, on a now-infamous camping trip that I see as the incident that changed my and my sister's lives. We returned to Grandma and Grandpa's house the next day with moderate-sized ticks literally covering our appendages. A short but striking image still plays in my head: my sister, Maha, and I pulling the ticks out, some of their legs staying stuck in our skin. Their gross, wiggly, legs. The way they creepily latched onto us. The number of them that had found me. The matches we eventually lit and stuck onto their heads to burn them off.
And that's the only time I've ever had a tick (and not just one) in my whole life. The same goes for Maha, who was diagnosed with chronic Lyme in 2010, and who's the reason I decided to get tested.
I don't remember having a rash, but as I've read on many Lyme sites, only half of Lyme sufferers ever actually display a rash. I also don't remember any drastic onset of illness or high fever, but that's not to say I didn't have it--I just don't remember. I don't really remember much after that isolated incident; surely we came back to Texas, finished the summer, and started school again as usual. There was no trip to the doctor or hospital after the tick bites. It was almost insignificant to the family--we removed the ticks, they were gone, everything was normal again.
But something was lurking deep inside me, multiplying in my blood and spreading to my organs, while no one had a clue. And I would spend the next 23 years of my life knowing--call it a hunch, an intuition, or a heightened sense of self-awareness--that there was something deeply, intrinsically wrong with me. This sense would stay with me, haunt me, and cloak the very essence of me throughout every attempt for a solution, for an answer nobody could give me until now.
My next blog entry will detail my symptoms and the crazy decline into debilitation that has ruled most--not all--of my life. I was a healthy baby. Too bad the memories of wellness are so distant.
Sunday, January 23, 2011
Welcome!
Hi, and welcome!!
Thanks for coming to my blog site. My name is Leila, I'm 29 and I was recently diagnosed with chronic Lyme disease. It took 23 years for us to properly diagnose why I've been seriously ill since I was six years old(!). So, here I am, and I've decided to start a blog to chronicle my experiences--past, present, and future--with chronic Lyme, for three reasons:
Thanks for coming to my blog site. My name is Leila, I'm 29 and I was recently diagnosed with chronic Lyme disease. It took 23 years for us to properly diagnose why I've been seriously ill since I was six years old(!). So, here I am, and I've decided to start a blog to chronicle my experiences--past, present, and future--with chronic Lyme, for three reasons:
- Mainly, to serve as a mini support network where other Lyme sufferers can come and comment. I want it to be interactive, and I welcome stories of your experiences!
- An educational source for non-Lyme sufferers, because, well, face it, most people have no idea what chronic Lyme is (they equate it with simple Lyme, just a bite and rash) and it's our responsibility to educate the world! German playwright Bertold Brecht said, "He who doesn't know is an idiot, but he who knows and does nothing is an imbecile."
- And of course, I'd be lying if I said I wasn't motivated by self-interest. Journaling has always been therapeutic for me, and writing things out brings me personal comfort. Since I've yet to begin treatment (Feb '11), I'll be experiencing all the side effects first-hand and chronicling them here.
I hope that people both familiar and not familiar with chronic Lyme will take the time to follow my blog. I will do my best to keep it real: serious, educational, honest (even if that means I'm in a terrible mood and feel like whining), funny, ridiculous at times, and full of stories to entertain. I hope you'll laugh at times, cry at times, and learn new things as you read... Lyme has affected 23 of 29 years of my life in every way imaginable, so I honestly don't think I'll run out of things to write about ;)
I'm really excited about this blog! Here are some of the subjects I plan to touch on in this blog (and please note that I will only blog about things that do relate to Lyme, but... that can be anything!)
Upcoming entries will cover:
Doctors, Doctors and More Doctors
Detailed experiences of all the doctors I've seen, including allergists, ENTs, stomach doctors, cardiologists, psychiatrists, psychologists, dermatologists, chiropractors, nutritionists, alternative practitioners such as acupuncturists, naturopaths, homeopaths; and all the absurd, ignorant and/or offensive things they've said to me over the years
Symptoms: Stages As Lyme Evolved in My Body
The various symptoms and stages of illness, and how they rotated and evolved throughout my childhood, pre-pubescent, teenage and adult years
Neurological Lyme--It's "In My Head"!
The fascinating "neuroborreliosis", essentially a swelling of the human brain after the borrelia spirochete cross the blood-brain barrier, wreaking havoc on our moods, behaviors, thought processes, and feelings, and the years I've spent taking SSRIs and SNRIs just to function
Before My Lyme Diagnosis: Adventures in Natural Healing
More than a decade of attempts at self-healing, starting with education on the dangers of sugar, gluten, and dairy; understanding adrenal fatigue and hormonal imbalance, diagnosis of candidiasis and candida remedies, and immune-boosting supplementation such as vitamins, minerals, herbs and probiotics
Failed Friendships
The many ways that chronic illness has damaged and destroyed friendships over the years, including but not limited to people tiring of my anxiety attacks and nausea attacks, which have labeled me an "attention-seeker"
Romantic Relationships... Oh Booooy!
Struggles and adventures in dating, with my last serious relationship ending in 2009 when my then-boyfriend broke up with me on the evening of the day I'd spend in urgent care, after deciding that my health problems were "kind of a drag"
How Lyme Has Hurt My Careers/Jobs
The challenges of sticking to scheduled hours, especially those that require me in the office early; the fatigue caused by 8-hour shifts; and the lack of sympathy from bosses who expect their employees to never use sick days (some great stories will come out of this topic!!)
My Sister's Experience with Lyme
Maha's story, after her own diagnosis with chronic Lyme in 2010, and how her diagnosis prompted me to get tested too
A Strong Will & Determination Aren't Enough, But They Help!
How attitude plays into healing
How attitude plays into healing
Daily Struggles, Herxing, Treatment
Updates on my status and side-effects as I begin treatment next month
Updates on my status and side-effects as I begin treatment next month
Long-Term Goals and Dreams :)
What I hope to be able to achieve in my life after I recover, and most are simple tasks healthy people take for granted
.... and of course, more subjects will come to mind as time goes on. Off the top of my brain-fog-filled head, these are the ones I can think of right now. Oy. Lol.
xoxo
Leila
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