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Nov 27, 2005
Reprinted from BBC News
For archery champion Mel Clarke it appeared to be a case of just holding her nerve to achieve her goal.
When she arrived at the World Archery Championships in America in 2003, she was ranked second nationally at the sport and was one of the competition favorites.
Yet soon after the tournament began, the 23-year-old from Taverham, Norfolk was no longer involved in a battle to win a medal - she was fighting for her life.
She explains: "One moment I was firing arrows really well...then within about 20 minutes I was unconscious."
Doctors feared she only had 24 hours to live as she lay connected to a life support machine, unable to breathe by herself. Mel, who had prided herself on her physical and mental fitness, was now close to death.
And the trigger for this catastrophic turn of events? A bite from a tick.
Doctors believe the tiny insect infected Mel with Lyme Disease, a potentially fatal bug which can also lead to arthritis, heart and nerve problems.
But, with a show of determination and bravery honed in top-level competition, Mel has overcome the odds - and won a gold medal in the World Disabled Archery Championships in Italy this year.
In 2003, she had travelled to Poland, France and Turkey for archery championships.
But while on tour in New York that July, Mel said she quickly went from firing arrows to losing consciousness.
Mel recalls: "I suddenly got a pain in my chest and my right side, my heart started beating quickly. My coach pulled me out of the sun because it was really hot and that's all I can remember until I woke up in a hospital a couple of weeks later."
Mel was unconscious in the hospital for about two weeks. She awoke to find she could not do anything for herself.
"I was shocked that I was there...I was on a ventilator, I couldn't breathe for myself and I was being tube fed. It was so unexpected...I was well beforehand. The doctors said I'd never fire another arrow, I was really gutted because I'd gone out there shooting really well."
But Mel, who took up archery when she was 16, vowed that she would find a way to fight back.
When it was time for Mel to return home, she was told by doctors that she had Lyme Disease.
And while she won her fight to survive, the infection has exacted a terrible price.
The disease has left Mel paralyzed from the waist down and blind in one eye.
The disabilities come on top of an earlier arthritic condition called reflex sympathy dystrophy, which has meant Mel used a wheelchair and crutches since she was 11.
When Mel felt well enough, she set herself a new challenge, to compete in the World Disabled Archery Championships in 2005. But the terrifying memory of that fateful day in 2003 when she was taken ill at her last world championship still haunts her.
In September, she flew the flag for the British team and won a gold medal.
"It's been a two year battle but I think it's made me stronger. Of course, there are days when nothing seems to go right, but everyone has those, don't they?" she said.
Mel holds 10 national able-bodied records and six International Paralympic World records. She is now training for the Beijing Paralympics in 2008. 
Posted at 09:24 am by pattyknack
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Nov 15, 2005
I used to teach riding lessons at a camp in Madison, Wisconsin. One summer toward the end of camp, I got very sick and had a large rash on my stomach. I didn't think anything of it, I thought I just had a cold or something. That was about 7 years ago.
A year after camp, I developed swelling in my left knee - a HUGE swelling. I got x-rays, MRI's, saw orthopedic doctors. Nothing showed up on any test. Finally, one of the doctors asked about Lyme and prescribed only two week's worth of antibiotics. All seemed well after that. I returned to college - and begin to get sick again. More knee swelling, flu-like symptoms, fatigue...so I return to the doctor.
The first thing he asked me is if I thought I was pregnant! He runs another Lyme test, tells me the test was negative and this is all in my head. I knew my body and I knew my symptoms weren't all in my head! I had tremendous leg swelling and was sick the remainder of that year.
The following year I was really sick with fatigue and more leg swelling, missing lots of my classes. My roommate took a reluctant me to the emergency room because my leg was so swollen I couldn't remove my pants. They removed 100 cc of fluid from my knee and did another Lyme test - that came up positive. I was put on a month's worth of antibiotics but continued to have swelling and fatigue. Finally, IV Rocephren was prescribed. I went to the hospital every day for 3 weeks and had IV's pumped into me for an hour each time. I was told I should be fine after this.
A year later, the swelling in my leg returns and go through another round of x-rays and MRI's, with the doctors insisting there was no way I should remotely test positive for Lyme with the amount of antibiotics I've had...but I did test positive.
I was put on another month's worth of antibiotics and did fairly well until recently. For the most part, I'm still tired but am trying hard to combat it with diet and excercise. In June of 2005, I began having another major flare-up with very severe knee swelling and fatigue.
The most recent doctor I've seen has been an orthopedic surgeon. I went to him a few times and was put on anti-inflammatory medication and STEROIDS, which I read after the fact, were BAD for people with Lyme Disease. He was not very helpful because he just wasn't educated about Lyme Disease. He suggested I see a rheumatoid specialist. I have flare-ups maybe 1 or 2 times a year for about a month at a time.
When I first started talking to members at MYSPACE about Lyme, I sort of brushed off trying to hunt down a specialist. I kept thinking "I don't have it NEARLY as bad as some of them do!" I could just live with it. After all, that's what the doctors were pretty much telling me to do. But the more I started talking to other folks who are in an area where there are a number of specialists, I have decided "NO", I'm not going to live with this disease and I am going to start getting aggressive with my health. Now I am becoming a crusader for myself. I am determined not to be hindered in what I do because of Lyme.
Posted at 05:22 pm by pattyknack
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Nov 13, 2005
My name is Qs and I'm a 41 year old woman from Michigan.
My Lyme nightmare began in late 2001, while attending college in Oklahoma. As a child, I was always sickly but as I reached adulthood, I considered myself healthy with the exception of being overweight and having high blood pressure.
At the age of 35, I moved from Michigan to Oklahoma to pursue a once-in-a-lifetime opportunity to attend college in an adult non-traditional program that would allow me to earn a Bachelor's degree. I was excited about being accepted and during my 3 year stay did quite well as a full-time student, maintaining a 3.5 grade point average. I considered this achievement the greatest accomplishment of my life.
During the course of my stay, I transferred universities to allow me to complete my practicum without long distance travel. During my first and only semester at the University of Oklahoma, I began to feel fatigued and would sometimes find myself falling asleep in class. I ignored this first symptom because I felt that working part-time and attending school full-time and helping to care for a 102 year old terminally ill friend, that I was burning the candle at both ends.
My friend eventually passed away and things went back to normal in regards to school and work. The September 11th terrorist attacks occured and I remember being really devestated and afraid. Soon after that, I began to experience anxiety attacks for the first time in my life. I also noticed that fatigue was growing worse, to the point that I paid a visit to the school health facility. I was advised to go to a local clinic to get medication for the anxiety and to rest more to alleviate the fatigue.
Things never let up but I somehow managed to make it to the last day of the semester and was looking forward to my month-long holiday break. I had one last final exam and then the semester would be complete. My exam was scheduled for 5 p.m. and I totally forgot about it. When I finally remembered, it was 7 p.m. and I rushed to the University only to find an empty classroom. Fortunately, the professor was still there, waiting for me. She indicated that she knew that something was amiss because I had earned an A in her class and had not missed a day of class, so my not showing up for that exam was a surprise!
I explained to her that I had totally forgot about the exam and she gave me a perplexed look. She allowed me 30 minutes to complete the 6 essay exam, that would have otherwise taken 2 hours to complete. I looked at the questions and fought a panic attack as my hand moved furiously to write an essay to each topic that she had outlined on the test. I managed to earn a final grade of B+.
A week later, I attended a Christmas dinner date at my uncle's home and was fine. The following day when I awakened, I literally could not move. My whole body ached, I was fatigued and my ears buzzed loudly. I knew that something was awry.
I managed to drive myself to the Emergency Room, which was located around the corner from me. They ran a few blood tests and found nothing wrong. I was given Xanax for anxiety and sent home. Each hour I was getting progressively worse. I made at least 10 visits to the same ER and each time, would be sent home. It got to the point that they refused to see me and I was left sitting in chair in a side room. I had no medical insurance.
I kept calling my mother in Michigan, crying that I was ill and needed her to come. I truly thought I was dying. Mom kept telling me that everything would be okay and that she couldn't come. I was so lost.
It was finally my aunt who told my mother that I needed her and that she would finance my mom's plane trip if need be. In the meantime, my uncle had come to my apartment and took me home to be with his family. I could not walk unassisted and had to use a walker that a friend had given me.
The following day, the whole left side of my face went numb. It tingled like pins and needles and I asked my uncle to take me to the nearest hospital. Thank God at least it was a different hospital than the previous one because at least I would not be turned away again. The hospital ran tests after I signed a statement saying I would be responsible for the cost. They took an x-ray of my face and swollen throat and determined there was something the size of a cotton ball in my esophagus. I was sent for a CAT scan and told nothing had shown up on it. However, I was referred to an Ear, Nose and Throat specialist because my lymph nodes were swollen and I had a high sedementation rate.
After being sent home again, I phoned my mom and asked her when she would come. She said that she couldn't leave until January 3rd, so I had to wait 2 days. In the meantime, my aunt and uncle felt that she did not need to come, spoke with her and convinced her not to. I finally screamed into the receiver "WILL YOU JUST GET HERE ALREADY!" I still can't understand why my mother didn't want to come, nor seemed to take what was happening to me seriously. I'm still hurt about this but keep it to myself.
My mother did arrive 2 days later and one look at my condition let her know that she should have been there like yesterday. We went back to my apartment and I told her I needed to see a specialist that would cost $300 I did not have. Mom charged this to her credit card and I was able to see the specialist a week later (after 2 more ER visits to the same hospital that had turned me away previously). Mom being there helped.
The specialist said more tests needed to be run because he suspected that I had lymphoma and since I had no money, Mom and I made plans to return to Michigan. I had a household full of furnishings and possessions that I just had to leave behind. I was only able to pack and ship 5 large boxes, so we only packed what was most important to me.
Mom drove me to the University to withdraw. I could hardly make it into the office to meet with the counselor for my exit interview. I explained to the counselor what had happened and she told me that my financial aid refund had been mailed out for the next semester and that I would need to pay it back. It was $2500. She told me to cash the check and pay it back later because it would take months before they would ask for it. I needed to finance the trip home, so I did just that. I received a letter in the mail from that counselor a month later saying that God had laid it on her heart to pay for my debt. She included a receipt for the amount she paid in my behalf. I tried to contact her to thank her but she had retired. I truly believe that she was an angel.
Once back in Michigan, I was able to get emergency Medicaid and my journey began. I researched my symptoms and everything pointed to Lyme Disease. It made sense because I recalled being bitten by a small reddish-colored insect while fishing the previous summer.
I developed a small bump in the center of the bite and the rest of my arm had become inflammed. The rash remained for a week. I contacted the Michigan Lyme Disease Association and was referred to an Infectious Disease specialist who accepted Medicaid. I made an appointment and saw him a week later. When I gave him my list of symptoms, he agreed he should do a Lyme test. He did that along with a lot of other tests, including a holter monitor. Two weeks later, I was told I'd tested negative for Lyme Disease but positive for Mixed Connective Tissue Disease.
I was also diagnosed with Chronic Fatigue Syndrome, Supraventricular Tachycardia and Mitral Valve Prolapse. I was prescribed Tenormin and referred to a rheumatologist.
As the years have passed, neither of the rheumatologists I've seen believe that I have MCTD. Although I had a positive ANA initially, it has been normal since.
I have continued to have the previous symptoms along with new symptoms that continue to plague me. My symptoms are usually worse during the winter months and include fast heart rate with palpitations; numbness in my face on the left side; head pressure; heaviness in my left leg warranting the use of a cane; crushing fatigue; joint and muscle pain; numbness in my legs and feet; constant ringing in my left ear; memory loss and brain fog; hair loss; temors; headaches; sharp pain in my left temple; dizziness and eye problems.
I underwent lapband surgery and when I woke up, felt as if I was being stabbed in my left eyeball. My eye was inflammed and the eye pressure has been high in both eyes since. I have been diagnosed with suspicion of Glaucoma.
I'm currently under the care of my third neurologist, who tested me for Sarcoidoses and Multiple Sclerosis. I've had 6 MRI's in 2005 alone. Each MRI of the brain indicates a delayed signal in the white matter of the frontal lobe. I recently had another MRI of the spine. I also had a lumbar puncture which was clear.
I began to research my symptoms again and thought that perhaps I may have heavy metal poisoning. Somehow Lyme Disease symptoms surfaced in my search engine for Mercury poisoning symptoms. I looked at the symptoms again and became convinced I had Lyme Disease. I've been referred to an LLMD and have an appointment soon.
I will ask to be tested again and hopefully will be given a clinical diagnosis. I will keep you updated as to the outcome.
I just want this nightmare to end as it continues every day.
Posted at 01:27 pm by pattyknack
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Oct 3, 2005
Beverly's Battle with Lyme

I grew up in Southeast Michigan, moved to Tennessee in 1991 and married in 1993. We had our first child, Barbara, in 1997 and felt we were blessed again in 2000, when I learned I was pregnant again.
This is where my strange twisted story begins.
When I went to my Certified Nurse Midwife, she automatically does screening for sexually transmitted disease as well as AIDS/HIV screens. She told me there was something strange with my test results.
It was showing something like Syphilis...I looked at my husband and he looked at me, both of us confused and accusing. Then the midwife said "NO, YOU DO NOT HAVE SYPHILIS!" I thought "OK" and never thought about it again.
In April of 2001, I had my son and we believed we had the perfect family. I underwent a tubal ligation in June of 2001. General anesthesia (which I didn't know then) can cause dormant Lyme disease to become active. After my surgery, I went back to work as a waitress so I could spend more time with my baby and not work the 8-5 jobs that I had previously. One day at work, I noticed a large, red hot to the touch, rash on my left lower leg. Since I'd recently had surgery and had some medical background as a medical assistant, my first thought was "Blood clot" and that I'd gone back to work too soon after the surgery. When I got off work I went to the Emergency Room and was told the rash was cellulitis, an infection under the skin. That was when the SEVERE migraines started.
I had one of these migraines nearly every day for 4 years and due to the vomiting, lost 100 pounds in 3 month's time. Doctors told me I was bi-polar and bulemic. I kept calendars of everything I ate, the weather, barometric pressure. You name it, I had a calendar for it. I didn't believe the diagnosis and told doctors, "No. You just tell me what's causing these headaches and I'll go away quietly."
Then I was accused of drug-seeking. By this time, they had me trying every antidepressant known to man because something in them was supposed to help migraines. I would have literally tried anything at that point - my illness was affecting my life with my children and husband, not to mention our financial situation, as we had to pay out-of-pocket for what insurance wouldn't cover.
Then the tremors started. I would shake uncontrollably and had gotten dehydrated on several occasions. Doctors tried Neurotin, Depakote, Topomax. None of the medications worked and no one could figure out why. I had to quit working. My husband was now the sole money maker in the home and we were barely making it. I'm no stranger to the food bank in order to feed my children.
I did have insurance so was able to see doctors and get my prescriptions filled, however, thanks to our Governor, I no longer have this.
I was sent to a neurologist for the migraines and tremors after being told by my PCP that there was "nothing more we can do for you". The neurologist asked what the doctors had given me that would work for the migraines and I told him "Percocet 5-325". I later found out he sent a letter to my PCP, telling him that I had asked for Percocet, when I hadn't asked for anything. When my right side went completely numb, I phoned the neurologist again. I couldn't feel anything and his office told me to come in. He then wrote a letter telling my PCP I'd "demanded" to be seen, that there was nothing at all wrong with me and I should get a referral to a psychiatrist. He tells me that I need more potassium, writes a prescription and out I go.
I ended up back in his office - dehydrated, so weak my husband had to help me with every little step I took. I could barely walk. I fell onto the table in the examining room as I had no energy to even sit up. The doctor came in, asked what was wrong and I told him very firmly "What else? Another migraine and vomiting for several days." I couldn't even hold water down. The doctor laughed at me and said to my husband "She IS in a foul mood, isn't she?" DUH! I've endured years of this! HELP! SOMEBODY, ANYBODY!
I found out years later he did a drug test on me that day and it came back clean. Had I known this at the time, I would've stuck that drug test right up his smart aleck &$#. I finally found a doctor that took me seriously and I'm very thankful to have her. She is not an LLMD but is treating me.
She was the first doctor to order an MRI of my brain, which came back showing too much cerebral spinal fluid, a thickness in the frontal parietal area and multiple hygomas. An MRI of my neck showed all cervical vertebrae to be fused. The "experts" thought it was surgical, even though I've never had surgery on my neck. My doctor sent me to a neurosurgeon who told me "There's nothing I can do. Your brain is smaller than your head." I told him I certainly hoped it was or my brain wouldn't have fit in my head. This guy actually wanted me to make another appointment with him! For what? I'd just wasted a 100 mile drive for nothing.
Just when I thought I was beginning to feel a little better, I drove 35 miles for my next doctor appointment and while driving home, began to drift in and out of consciousness. I drove right past my exit off I-40, then exited the wrong exit (unaware that I had done this) and had driven 40 miles to the next town before I realized what I'd done. By the time I made it home, I was shaking like a leaf on a tree in a hail storm. I couldn't remember anything that had happened during that episode.
Over the next few weeks, this would become a regular thing. My husband would be talking to me and I'd appear to fall asleep and not remember anything when I "came back". I was sent to another neurologist, even further away and he told me I was having focal sensory seizures - yet I was on anti-seizure meds for the migraines! He wanted to order an EEG but was unable to find a place that would do it and have it covered by my insurance. At that point, my insurance carrier changed and my doctor was not on the NEW plan! I was left to try to find a new doctor, which is hard in a small town as most doctors weren't taking new patients. I did manage to locate a doctor - one I'd never seen before.
My "blackouts" continued. In the summer of 2003, I lost consciousness and hit the cement floor between my washer and dryer. I woke up to my son sitting on top of me, screaming and crying "Mommy, please wake up!" My children have seen a lot of the horrendous things this illness does. They've seen the affect of Lyme rages, where you lose your mind over nothing and fly into a rage. On the really bad days, I had to have someone stay with us and actually help me take a shower because I was unable to stand for any length of time. God bless my sister-in-law, who helped with the kids and the housework I could no longer keep up with. I was a physical and emotional mess.
I went to a mental health counselor and saw a psychiatrist as by that time, I felt like the headaches were literally driving me crazy. She gave me the name of a neurologist who specialized in headaches, who gave me a shot in the back of my head - which did nothing to alleviate the headaches. We tried 2 or 3 more times and still no relief. This neurologist said "I have no idea why you're not responding to this treatment." - and gave up on me.
In September of 2003, I was home alone with my son when I completely lost my vision without any warning at all. I didn't even see shadows, all I could tell was light from dark. My son, being the wonderful child he is, sat and watched cartoons. I explained to him what was going on and that he needed to help mommy, which he did until my husband came home. I told my husband that I couldn't see anything. He asked "What do you mean?" I said "I cannot see you." My daughter came home and we took the kids to my sister-in-law's and went on to the Emergency Room. They examined me and put something in my eyes to make them glow. When they turned off the lights, I could see the direction light was coming from, but that was it. They put up an eye screen for me to read. I couldn't read it. We were there for hours, while the ER doctor tried to page every opthamalogist in town. None of them would answer his page, not even the opthamalogist on call. The ER doctor finally spoke to a doctor in Knoxville, Utah and set me up with an appointment for the next day - 120 miles away. The next morning my husband told me this Utah doctor would undoubtedly want to see me more than once and my husband was afraid our car wouldn't make the 240 mile trips back and forth, so he got out the phone book and started calling around to find another doctor (closer) that would take my insurance. I got an immediate appointment with Dr. Mike and he will always be my hero.
He determined my eyes were fully inflammed and I asked him what would cause that. He said "Have you recently had a rash?" Dumb me...with the short term memory loss I was suffering from, I'd completely forgotten about the cellulitis diagnosis and told him "No." Nevertheless, Dr. Mike sent me to the hospital for lab tests. The lab results went to Specialty Labs in Santa Monica, CA and when they came back, I finally had my answer - Lyme disease.
I was totally ignorant as to what Lyme disease was. I'd heard of it but it was one of those things you didn't think much about because I didn't live in Connecticut or anywhere near there.
I was on drops in my eyes every hour as they were so inflammed, my irises were nearly closed, causing the loss of vision. After a few weeks on the drops with very little improvement, the opthamalogist started shots in my eyes, which worked wonderfully. I stayed on the drops as well, but it was a very slow process until I could finally see again. Dr. Mike also started me on Doxycycline, as soon as he got my lab results. When I eventually got my vision back and could see him, I hugged Dr. Mike. Finally, an answer to my prayers as to what was wrong with me. The Lord sent Dr. Mike to me, as no one else knew about Lyme. He referred me to another doctor and told me to have this doctor run a titer test to see what the titers were doing. The test came back equivocal. He told me I no longer needed to take the Doxycycline, that I'd been on it 2 months longer than needed and that the Lyme was gone. I was thrilled.
Four days later, I lost my vision again. I returned to Dr. Mike, who asked "What happened?" I told him the doctor had taken me off the Doxy because the Lyme was gone. Dr. Mike was furious. He phoned the doctor and had him fax a copy of my lab results. He said the Lyme was definitely NOT GONE, that I was still showing titers and would have to be on antibiotics for a very long time.
He said "You need to be on Rocephin IV but I can't order it for you. And the doctor you're seeing won't either because doesn't think Lyme disease warrants this treatment." Dr. Mike warned me not to go off the Doxy again, that he might not get my vision to return if I did.
When the swelling in my eyes began going down, Dr. Mike saw something on the retina of my eye but couldn't tell what it was. A retinal specialist was consulted but he couldn't tell what the "something" on my retina was either. He decided to treat it like a cyst and see what happened. Luckily, it worked. He told me to continue to follow Dr. Mike's advice, that he had a very good handle on everything. They both advised me to see an infectious disease specialist, who said I needed to be on Rocephin IV. I was thrilled. Finally, another doctor that knew about Lyme. (Or so I thought). At my next appointment she told me I didn't have Lyme disease, that I had Rhuematoid Arthritis. But I stayed on the Doxy as Dr. Mike had instructed. In the meantime, my old doctor's office called and said they were now part of the group covered under my insurance, so I got my old doctor back. She wrote out a prescription for a year's worth of Doxy. I was so happy. I was actually able to go back to work for almost a year.
Then toward the end of 2004, I was a mess again. The migraines returned with a vengeance. My body ached like never before. I literally thought I was dying. My chest hurt so badly I thought I was having a heart attack. I phoned my brother, crying and screaming as loud as I could for help. He phoned my husband and then took me to the hospital. They gave me nitro, shots of morphine and admitted me. The cardiologist ran all kinds of tests - stress test, 3-D Doppler, an Echo. It was determined I was suffering from bradycardia (slow heart rate) and the Lyme had attacked my heart. The hospital and cardiologist referred me to an infectious disease specialist that knew about Lyme - who referred me to a neurologist for the neurological symptoms I was having - short term memory loss, tremors, migraines, hair loss, light sensitivity, dizziness, disorientation, poor balance, muscle pains and cramping, nocturnal hypoxia (which put me on oxygen at night when I sleep), poor concentration, severe pain in my knees and legs. I'd begun having speech problems - stuttering, not being able to find the words I was looking for, writing numbers backwards, transposing every day words.
One day I was looking for the dustpan while I was sweeping the kitchen. I kept asking everyone if they knew where the thing was that I swept the dirt into. I couldn't remember what it was called. My seven year old daughter said "Mom, do you mean the dustpan?". Talk about being put in your place! My refrigerator has more magnets on it with notes on it than it has food inside it. I have calendars again, this time so I remember what I have to do. I can't remember what was bought at the grocery store. I've even forgotten how to cook things I used to cook all the time. Recently, I broke nearly every glass in the house due to tremors, including one special one that had belonged to my husband's now-deceased brother. I lost it right then - almost had a nervous breakdown. But back to the neurologist at the hospital...
I kept my appointment and when he asked why I was there, I told him Lyme disease. He said "THERE IS NO LYME DISEASE IN TENNESSEE!" That should have been my warning to run right there, but I was still naiive. I'd come to do a lot of research on the Internet and join Lyme support groups where I've met many wonderful people. The best thing was, we all knew what each other was going through. The CDC gives false information...there is no testing for Lyme that's foolproof. However, at that time, I was still naiive about Lyme disease. The neurologist drew blood, told me I did NOT have Lyme and explained to me that the CDC drags nets across the state and checks ticks for Lyme and that they've found no ticks to be infected with Borrelia Burgdorferi and Lyme. My question is, where exactly did they drag the net? Because it sure was NOT in my neck of the woods - or anywhere else in Tennessee where I've met the wonderful others with Lyme disease! The CDC is full of bunk and hardly anyone with Lyme disease will meet their reporting criteria. Doctors are afraid to treat Lyme, insurance companies won't pay for treatment, doctors who have treated it aggressively lose their licenses to practice. It all sounds like a coverup to me! Anyway, I'm sorry...I'll get off my soapbox and get back to the neurologist...
He diagnosed me as having MS and sent me to yet another infectious disease specialist, at the same well-known hospital. I went in with information in hand, a list of my symptoms, statistics, everything. I thought "I'm ready!" This infectious disease doctor walks into the room and says "So, you're here for Lyme disease?" I said yes. He said "THERE IS NO LYME DISEASE IN TENNESSEE!" and asks what the neurologist thought was wrong with me. I told him MS. He said "I agree with the neurologist. You do not show any of the symptoms of Lyme." I handed him my list of numerous Lyme symptoms and he then very hatefully informed me that he was "a REAL doctor, not an Internet doctor."
He did draw blood which went to Quest Labs in Atlanta, GA. The Lyme AB screen came back 1.51 high. He did a Western Blot and did not use all the bands required - this lab used the references for Western Blot from a conference in Dearborn, MI in 1994! He wrote really big on the doctor's copy "NO LYME DISEASE". (I suppose just in case my doctor treating me for Lyme was blind or something). Still, she did not stop the Doxy. God bless her. The neurologist scheduled a spinal tap. I stopped the antibiotics because I wanted to get a TRUE test result this time and you need to be off antibiotics for six weeks prior to testing. I stopped taking the Doxy and before the end of the week, my husband stayed home from work because (fully awake) I was telling my daughter to get out of the closet. You couldn't put a broom in this closet much less a 7 year old girl! I remember none of this. So my husband brought me to the doctor again. All I remember was going into the examining room and lying down. I couldn't have cared less where I was or even KNEW where I was. I carried on conversations with people I didn't even remember. I was diagnosed with dementia and underwent another head CT. This one showed a sinus infection. Back on the Doxy I went and my brain (or what's left of it) came back.
It's hard to believe that I had one year left of school to become an RN and have a degree in medical transcription. I can recall hardly any of it. I can no longer type 80 wpm, I'm lucky if I get 5 words correct at a time.
Now I was shuffled to an ENT, who scoped my throat and found nothing but some sinus congestion. Back to the neuro for a six hour spinal tap. I had to beg my dad to drive me. We'd almost gotten home when the doctor phoned my house and says they forgot to draw blood and the spinal fluid won't be any good without blood. My dad turns around and drives me back - trips totally over 400 miles. I have to wait over an hour for them to draw blood. They can't find the orders for the blood draw. I'm lightheaded, my back is killing me and I'm trying to sit in a way that is somewhat lying down. My dad talked to the doctor and told him he'd bring me back on one condition - that they fire whoever forgot to draw the blood after being there six hours. I have yet to see the results as when I phoned the lab, they told me there was a holdup because they needed to check something out and it would take time. My results were coming up strange. Oh no...strange results...NOW WHAT? God only knows because I still haven't found out what the problem was or the results were.
The neurologist phoned my husband at work and informed him there was absolutely nothing wrong with me. He asked him "Then why does something happen every time she stops the antibiotics?" The neurologist told him "It's psychological." That I needed a psychiatrist. He even claimed my blindness was psychological, that I never did go blind, when my husband questioned him about it. When I phoned the opthamalogist and told him what this neurologist had said, he laughed and said not to worry about what the neurologist had said, that he doubted if he'd ever seen a case of Lyme.
Now I'm applying for medication through pharmaceutical companies as I no longer have insurance. But some good things have come out of this for me...I have met many new friends who understand what's going on with me. For that, I'm truly grateful. And by telling my neighbor about Lyme disease, it kept a co-worker's husband from getting chronic Lyme, as he got a rash and immediately went to a doctor and asked for antibiotics.
I hope my story can help someone. I ask the Lord daily to help me win the fight against this disease and to bless all the people who have it. It has destroyed so many people's lives. It puts financial strains on people, relationship strains on marriages and tears families apart.
Thank you for taking the time to read this.
Beverly
Tennessee
Posted at 01:25 pm by pattyknack
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Oct 1, 2005
Lyme Disease: A Death and Resurrection
My life had never been particularly difficult. In fact I often felt guilty that others appeared to be struggling so ,while for the most part, I seemed to sail smoothly along. Of course I had my little ups and downs but never really experienced the tragic in life.
About 17 years ago, as I was driving to work one day, I vividly remember a conversation I had with God. Dear God , I said, I am truely grateful for all the good in my life but I feel as if I am spiritually stagnant, not growing, learning and helping others the way I feel I should be. So...if I need an experience to help me evolve and grow, please....just don't make it too difficult to bear. Looking back, I can't believe I was saying this! Little did I know what I was about to experience.
As the year progressed, I gradually began to acquire odd unexplainable symptoms, such as tingling and numbness in various parts of my body, lower back pain, headaches, stiff and painful finger joints and fluctuating anxiety. I remember visiting our general practioner for tingling and numbness in my arms and hands. Without testing of any sort I was handed valium. Of course, the valium did not help.
During this time I was working in the cafeteria where my small children attended school. This worked out well as I had the same schedule as my children. When school let out for the summer that year, we looked forward to our traditional activities....camping and boating. I will never forget the camping trip where my life was changed forever. One morning I woke up in our camper and felt extremely ill. It seemed as if I had the flu but the symptoms were in some ways atypical. I was very weakened and sick but yet I could not sleep. What was the most unbearable to me however, was the free floating anxiety or panic....for no discernable reason. I would find myself pacing the floor, desperately trying to get away from it. I remember saying to myself that I would not wish this experience on anyone...not even my worst enemy.
In the weeks and months to follow, I would plead with my dear family , who was so supportive and understanding ( even though they couldn't really understand ), to just put me away in a mental institution because I felt as if I was losing my mind and I did not want to be a burden. I made an appointment with our family doctor and was given three weeks of antibiotics...just to be sure.....in case I had Lyme Disease. This was around 1989. They did not test me for Lyme at this point. I was told that it would be too early to show accurate results. It was assumed that if I did have lyme that it must be from a recent bite. However, I feel the illness had been simmering in my body for quite some time. The treatment did not seem to touch my symptoms at all and in fact, I felt worse. The panic/anxiety became so intense that I was prescribed tranquilizers.
For several months, when I was at my lowest point, I was unable to care for myself or my children so we temporarily moved in with my husband's parents while my husband stayed at our home to continue working. Then the doctor decided that depression must be my problem so he prescribed antidepressants. He informed me that if needed, I could take up to three at a time. That night I did end up taking three pills because they didn't seem to be working and in fact ended up making the situation worse. I woke up in the early morning in a state of fear and with the thought that I needed help. As I went to the top of the stairs to call for assistance, I fainted and fell down the stairs. My seven year old son called the ambulance which took me to the hospital. At the hospital the doctors performed several tests, including a CAT SCAN of the head. When the doctor found nothing obviously wrong with me, I was asked what I liked to do in my spare time. I told him I enjoyed boating with my husband. His only suggestion, before he sent me home, was to take more rides on the boat with my husband and that this would most likely make me feel better.
When summer came to a close, it was time to return to work at the school. I was barely able to function but wanted to press on for fear that if I gave up and quit that my life would be over. At least this way, I thought I could keep up some sort of normalcy. My coworkers were not very understanding.....to say the least. At times I was so lightheaded and weak that I would immediately have to lie down on the cement floor in the stockroom to get the blood flow back to my head. With me, it wasn't a matter of sleepiness but a simple inability to stay upright for very long. The women I worked with would say to me...."well , we get tired too sometimes you know, but we don't have to lie down!"
Time went by ,as I struggled every day to function, and I was diagnosed with Chronic Fatigue Syndrome. Even though there was no cure, it felt good to have some diagnoses besides depression. I knew something was seriously wrong with me and that it wasn't just "all in my head". Actually, most of it was in my head, but in an organic way...not psychologically. Every couple of weeks a strange new neurological symptom would add itself to the others already in my repertoire.
One of the most difficult parts was that most people just did not understand. How can anyone be so sick for so long while the doctors can't find any concrete cause? I can't blame them really. One has to have had this disease to appreciate the full implications of it's diabolical fluctuating nature. Because I didn't want people to feel that I was lazy or mentally ill, I set out to prove that I was really and truely organically sick. This drive led me to begin researching the vague diagnosis of Chronic Fatigue Syndrome (CFS). I would bring all my research to my doctors, hoping desperately that they would take an interest. My family doctor was very supportive but all the specialists I was sent to told me to accept my diagnosis, that I was depressed and why was I doing all this researching? The doctors would tell me that diabetics for instance...they accept their disease and get on with their life so why cou! ldn't I do the same. My neurologist told me that I should stop all the researching because I wouldn't want her to get the wrong idea and that other doctors would also get the wrong idea about me. She was insinuating that I was crazy. I went home that day in tears. No one who is sick should have to be treated this way. Many patients with vague diagnoses , such as CFS and Fibromyalgia, often express the idea that they almost wished they had cancer so they would be taken seriously. Some have even expressed the thought that at least with cancer , many die and get it over with.
After 8 years of having "Chronic Fatigue Syndrome", my research led me to Lyme Disease. I noticed the symptoms of CFS and Lyme were extremely similar and decided I wanted to check this out. I made an appointment with a lyme literate doctor and began my still ongoing recovery. I was tested for Lyme Disease by this doctor but the results were negative. However, I was treated anyway based on my history, symptoms and the fact that I lived in a very endemic area. At first my symptoms became worse, as I was warned. I was told that this was a good sign and meant that the antibiotics were hitting the target. I was on a high dose of oral doxycycline and it took four months before I even began to see any improvement and then finally, little by little, some of my symptoms began to fade away. It was a very slow process with many setbacks and flares....but each month these cycles of flares would be reduced in severity. I learned that the setbacks and cycles we! re almost always temporary. I would often tell myself not to worry when an old scary symptom would reappear. Usually in three to four days the particular symptom would disappear and another one would take it's place. Again, in my experience, each month the symptom cycles were less and less severe.
After 4 months of antibiotic treatment, I was retested and was now positive. The explanation I was given for this, which makes sense to me.....is that those who are the sickest, most likely have the heaviest load of the lyme bacteria. Many times all of one's antibodies are tied up to these bacteria in immune complexes. When the bacteria begins to be killed off, this frees up some of the antibodies which can now be measured. So...in other words....it is often those who are the sickest and chronically ill who test negative for Lyme Disease when using antibody testing.
Two years ago I had to switch to another doctor who specialized in Lyme Disease. I was begining to slip backwards because of breaks in treatment. I had never really been on consistent long term treatment. This new doctor had me tested with the Bowen test and I tested positive for Lyme and Babesia. Now that I am finally being treated consistently for the lyme and the first time for Babesia, I feel as though I have my life back.
During those many years in limbo, I felt as if I had lost my connection to God. Lyme Disease had pretty severely affected by brain and nervous system which made it difficult even to think....never mind to experience spiritual feelings. I couldn't understand why I would have to go through a trial or experience which would make it so difficult to feel God's presence.
As my thinking became clearer with treatment, my feelings of spirituality gradually began to reappear. I spent more and more time reading inspirational books. I wasn't trying to be healed nor was I asking or seeking anything else material or specific. I just wanted to feel and be aware of the presence of Spirit or God. I wanted the joy and love and goodness I was recieving from God to flow through me and envelope those around me. As I focused in this way, I felt as if I have emerged from an egg into a new world of excitement, happiness, joy and love. So many wondeful people have crossed paths with me and for this I will be eternally grateful.
Intuition seems to have increased, synchronicity abounds and everyone I come into contact with is trying to serve humanity in their own special way. I have improved a great deal and seem to have aquired new abilities that I had never even dreamed of. It's like watching a play unfold....a good play. I now feel as if I have a purpose in life. The thought of growing older and losing vitality now never crosses my mind. I am finding just the opposite to be true. Not that I will now be free of all problems nor am I totally cured but this illness has brought me to a point where I appreciate life and those around me...so much more. While I personally don't believe that God sends evil or trials to us, I think our experiences reflect the degree to which we try to abide in Spirit. We all have a desire to know God and to feel God's love so perhaps when we are focused on the wrong things something inside us creates circumstances to head us in the right direction. So, desp! ite the fact that I still have memory and organizational problems and the world seems to be falling apart around us, I am experiencing a more consistent joy and assurance that in reality God is on the scene but that our real need is to open our awareness to this fact.
Lyme can be a devastating disease but there is always hope....especially when we look for it in the right places. I am sensing...along with a growing number of others, that despite what the media is telling us....more and more people are coming together in the spirit of love and cooperation. This spirit of love is the only thing that will truely heal our lives and the world. While, as many of you know, I feel we need to expose the corruption which is seemingly taking place all around us.... it musn't be with a sense of hate, fear or revenge.
I can actually say, even though the lyme journey has been a very difficult struggle, that if I could, I wouldn't want to change a thing. I feel that the Lyme experience has brought me to a whole new place....one of wonder and amazement.
I'm honored to be able to call Margie Tietjen a friend...she's the Director for Lyme Concerns for The Common Cause Medical Research Foundation and is a well-known author/activist within the Lyme community. You may read her essays at http://www.congregator.net/medical news/tietjen/index.html
Posted at 12:56 pm by pattyknack
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Scott's Battle With Lyme Disease
In 1997 at the age of 27, I became violently ill. It was the scariest thing I had ever experienced. Overnight, my body was ravaged by an unknown illness. I had difficulty walking, blurred vision, low-grade fevers, rapid heart rate, burning sensations in my arms and legs, severe joint pain, nausea, digestive disturbances (we'll leave it at that), brain fog, muscle spasms, motor-like tapping sensations in my hands and feet, and never-ending fatigue.
Doctors and health-care professionals were baffled. They suggested that I had Epstein-Barr virus, Mononucleosis, Fibromyalgia, Multiple Sclerosis, severe allergies, Chronic Fatigue Syndrome, and of course, even that it was all "in my head". I cannot count the number of times I was referred to a psychiatrist. Though I will readily admit to the reality that I probably do need one, it had nothing to do with my physical health. (read as "Scott has sense of humor")
After 27 doctors and nine months of feeling as though I had the flu everyday, I was diagnosed with multiple parasitic infections including Blastocystis Hominis, Giardia Lamblia, Cryptosporidium, Entamoeba Hystolytica, and others. I was also diagnosed with severe Candida resulting from antibiotic overuse from several previous doctors. Additionally, I had Leaky Gut Syndrome and severe food allergies.
I tried so many different things to get well. I received mega-doses of vitamins through IV. I administered coffee enemas. I was "smudged"  by mystic healers. I gave up wheat and fruit products for years. I gave myself regular injections of vitamins to help with the malabsorption resulting from the infections. I even went to one doctor that claimed that I was ill due to a virus found in Crystal Geiser bottled water (which of course never existed). I took EPD (Enzyme-Potentiated Desensitization) shots every two months for to help desensitize and heal my immune system. The EPD treatments required three days of staying at home eating nothing but potatoes and water. Oh, how I loved that. The list of things I tried went on and on...
My journey back to health took the next two years and careful coordination with my doctor, Jesse Stoff, M.D., one of the brightest and caring scientists I have ever had the pleasure to know. I learned many things along the way. Once I recovered, I never thought that another difficult to diagnose illness could strike again, but it did!
 After having recovered from my first bout with chronic illness which started in 1997 and lasted through 2000, it seemed as though everything was headed in the right direction. I was running 10Ks with very good times. I was wakeboarding, snowboarding, swimming, and doing Bikram yoga on a regular basis. Except for some ongoing allergies, as time progressed, I stopped identifying as "ill" and once again felt as though I had attained exceptional health.
Unfortunately, my regained health was not to be taken for granted. In September of 2004, I started having severe digestive difficulties (you name it, I had it) once again. Within six weeks, many of my original symptoms reappeared including severe burning sensations in my arms and legs and muscle twitches throughout my body. It seemed that I was revisiting the nightmare that I thought was finally over.
Dr. Stoff, who had helped me through my first bought with chronic illness, was no longer practicing as he had moved full-time into research. He did, however, refer me to a doctor that he consulted with nearby my home. I was subsequently diagnosed with probable parasitic infections, Leaky Gut Syndrome, Candida, and multiple food allergies. It seemed all too familiar, and yet, it was no less frightening.
The piles of medical bills and test results once again reached significant proportions. I was treated for parasitic and fungal infections with a month-long combination of drugs. The parasitic testing this time did not show any active infection though this seemed the logical course of action given my almost identical symptoms. I began to feel better, but about a month after the treatment ended, the symptoms reappeared. I was subsequently put on another combination of drugs for 28 more days (Septra/Yodoxin/Tindamax). This combination seemed to have made some progress as many of the symptoms improved. At that point, I thought I was starting my road back to recovery. Well, I was wrong...
In summer of 2005, I started a new therapy to help with the severe food allergies called BioSET. At this point, I was unable to eat milk, cheese, yogurt, eggs, soy, wheat, oats, barley, or rye. I found that I was not only allergic to foods, but I was also allergic to the very supplements that I was taking to get well. It was an amazing process to see how BioSET works. On my very first appointment, the practitioner said that I had Lyme co-infections and specifically named Ehrlichiosis. I went back to my MD and asked for tests to be run for Lyme.
The blood tests did in fact show a high IgG titer for Ehrlichiosis and an equivocal result for Lyme via Igenex Western Blot. When this happened, I was even more convinced that BioSET is real and that it can do amazing things for people with allergies and related conditions.
Shortly thereafter, I went to a doctor that specializes in Lyme-related conditions and was given an official diagnosis of Lyme Disease. My subsequent blood testing showed infection with Borrelia burgdorferi, the main culprint in Lyme Disease.
I am now going down the road for the treatment of Lyme and have hopes that my situation will improve. I still have a long road to travel, but I hope that my experiences will be of value to you. I've learned so many thing on this journey and I hope to be able to share a few of them with you here.
Please visit the Lyme Disease section of the site for more details on this often challenging condition.
In Better Health,
Posted at 12:45 pm by pattyknack
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Jamie's Battle with Lyme Disease
Testimony of Karen Forschner presented at the Hearing of the Committee on Labor and Human Resources First Session on examining the adequacy of the current diagnostic measures and research activities in the prevention and treatment of Lyme disease. In 1985, our only child, Jamie, was born. Unfortunately, I had a bug-bite and the full range of Lyme disease symptoms while I was pregnant, and soon after my James birth, his symptoms started. During the pregnancy and after the birth, I was seriously ill with multiple problems, including serious joint swelling and pain. Shortly after giving birth, a doctor told me my crippling arthritis was a permanent condition, and I would remain on crutches until I required a wheelchair. However, there was this mystery illness called Lyme arthritis, and the doctor offered me two weeks of antibiotics just in case. If my symptoms went away, I had Lyme disease. My symptoms temporarily improved but once off treatment the symptoms came back - in full force. At the same time all 5 of our beloved pets, 3 cats and 2 show dogs, became seriously ill after multiple tick bites and required repeated hospitalizations. As fate would have it, all of us contracted Lyme disease. Eventually all my pets were lost due to Lyme disease. Jamie was the light of our life; blond haired, blue eyed and smiling. By the time he was 6 weeks old, his health was in question. He had repeated vomiting and eye tremors. By 6 months old, he was showing signs of brain damage, eye problems, possible deafness, and had ceased to grow properly due to malnutrition. I questioned the doctors about whether my son could get Lyme from me during my pregnancy. I was guaranteed he couldn't. Our son was never exposed to ticks, and never had a tick bite. To understand this disease I would like to explain what it did to our son's brain. The bacteria attacked the part of his brain that controlled Jamie's eye movements, causing his eyes to swing back and forth, turn inward and outward, and become light sensitive. This caused him to have double vision, motion sickness, inability to open his eyes outdoors, and blindness. Jamie's facial and tongue muscles caused his face to be partially or fully paralyzed and droop, resulting in drooling, loss of speech and loss of the ability to eat or swallow. It allowed food or saliva to go directly to his lungs. Children and adults started staring at him; loss of speech frightened him; feeding him by mouth became life threatening as repeated lung infections started. Eventually a partially collapsed lung resulted in multiple hospital stays. Jamie could not tell us he was scared, had a headache, or even that he needed the bathroom. Jamie became mute, malnourished, and frustrated. It affected Jamie's hearing, causing his hearing test to show he was totally deaf. Then Jamie started talking. The Lyme disease nerve involvement had affected the test. It affected Jamie's stomach, causing repeated vomiting. Since he was too weak to lift his head, we had to worry about his drowning during times he was lying down. It affected Jamie's nerve conduction, causing loss of muscle tone. Jamie was "floppy", and couldn't sit, crawl, feed himself or even hold his head up. This devastating set of involvements made Jamie 100 percent dependent - for life. Tests, probes, biopsies, none could pinpoint the problem. When Jamie was one and a half, he had surgery to realign his stomach in an attempt to stop his life threatening vomiting. The surgery didn't work, and our son had a permanent hole cut into his stomach so that he could have a feeding tube installed to help keep him alive. Tom's company, a CPA firm, declared Tom (my husband) didn't have that "zip" that potential partners needed, and proceeded to let Tom go. Today, family leave would have given him some time to take care of his devastating family life. As Jamie approached his second birthday, we found ourselves unable to provide the medical care Jamie needed, and were told to institutionalize him. I turned into my son's advocate, and spent several months researching medical literature. I realized Jamie had Lyme disease contracted through placental transmission. Transmission of infection during pregnancy and adverse outcome had already been documented in medical literature. Then, a doctor saw permanent damage in our son's eyes - damage caused by a congenital spirochetal infection. Lyme disease is caused by a spirochetal bacterium. Then I found out about a test for Lyme disease resulting in Jamie and I testing positive! All of my son's symptoms were explained by the medical literature on Lyme disease. Life was good. I was told my son would get treated and the disease process would stop. Lyme was easily curable. Not true. Jamie was treated and relapsed several times. The meningitis in his brain had caused his head to enlarge to the size of a 14 year old. Clothes didn't fit unless adapted "for the multi-handicapped". How I learned to hate that word. When Jamie's relapses were in process, even his throat would collapse, and he spent time on life support. Media people were rushing out to see this child. I thought Jamie's story was of courageous struggle, but Dan Rather termed it the way the media saw the story: as "every parents worst nightmare". Those words will always haunt me. And then the nightmare started. Over time he was on life support many times. When Jamie received treatment he would recover. His vision returned. His speech started. He started to feed by mouth. His vomiting stopped. He gained weight. His lips could kiss and his arms could hug. But, despite the dramatic and documented improvements, over the years local doctors and health officials would interfere repeatedly with our son's retreatment because Lyme was "easily curable". Despite the proved cause and effect of treatment, evaluated by many independent professionals, the label of "Lyme disease" caused paranoid behaviour and the withholding of life-saving treatment. When we asked the pediatrician for a three-month perscription of Amoxicillin to give our son to prevent a relapse, we were told that Amoxicillin was dangerous, and there was no proof the Lyme bacteria could survive the short-term intravenous medicine he had been given while on life support. Two weeks later, we were back to the pediatrician for a potential ear infection. The same pediatrician prescribed the now safe antibiotic Amoxicillin to prevent an ear infection that had not yet started. And, the prescription was issued in the same dose we had requested for a total of four months! After attending a medical conference, I realized much information about Lyme disease was not reaching the medical community nor the public. And, with the help of many researchers, business, and lay people I established the first organization dedicated to Lyme disease - the Lyme Disease Foundation. Our mission was to provide an area where all of the scientific information could be discussed, not just the US version of "status quo". I gave up my career, and have spent 70 hours a week for the last 5 years as a volunteer. The sacrifices were great. We used up our life's saving in the process. Family provided us with food, clothing, holiday gifts for our son, and much support. We were in a race against time. Within two years, we had reached 210 million beople, and Lyme disease became a household word. Yet, there were no answers for our son. Doctors started fighting about whether or not my son should be retreated - even doctors not involved in my son's care! There was proof that Jamie's persistent infection continued to ravage his body, but electron microscope pictures of the Lyme bacterium proving current infection were not enough "proof" for the pediatricians. After all, they had talked to the state health department and an academic who recommended no retreatment. In 1990, NIH's new test photographed the bacteria still in my son despite repeated treatment, I was dismayed. When I showed this to his pediatricians, the doctors cancelled my son as a patient because I planned to have him retreated, since he was heading into another serious relapse. Once Jamie was retreated he gained back speech, muscle tone, vision, eating, and many other little boy skills. He was finally mainstreamed, into kindergarten. You see, once you are ill there are many battles to wage. Jamie developed girlfriends, learned to operate an electric wheelchair, became potty trained and finally found the little boy inside the diseased body. We waited for over a year for the NIH test to be released in order to check our son's progress. As my son started to relapse again, I waited for the NIH test. It never came, and we waited too long. Our son's last relapse started, and he began having seizures from the brain inflammation. Within 24 hours he was put on life support. The day he was declared "out of the woods", he died. His brain swelled up so much it killed itself. There was no tissue bank to send his remains to, so I had the unpleasant task of calling researchers around the country, and dividing up my son's body to send to different researchers. I loved this little boy, and would have died for him. Instead I was forced to arrange an autopsy. You see, the CDC has been denying congenital Lyme and death due to Lyme, despite numerous publications to the contrary, and I hoped this would provide proof that would help other children. Our insurance limits were used up. Jamie's medical bills had totalled more than 2 million dollars. The final cost to society for our son was around 2 1/2 million dollars. The majority of the cost was in disability care, and excessive non-Lyme disease testing. A minor amount was used for treatment with antibiotics. And, yes, the autopsy proved Lyme disease bacteria was still in his brain. Our lifetime savings were gone. Our pets were gone. Our jobs were gone. Our baby was gone. If public policy was prevention oriented instead of anti-antibiotic hysteria oriented, my son would be alive today. I am not alone. Other mothers have also lost their children. Thousands of us have worked toward finding the truth about this disease. Unfortunately, some parts of the government have an obsession with keeping the status quo. The true hero's of Lyme disease have been a mixture of public support groups, researchers and academics, front-line physicians, and some members of congress. HHS has proved to be a failure in coping with emerging epidemics, and Lyme disease patients are one more casualty from the current ineffective health care system. We have not asked what the country can do for us, we have always tried working with the government. We are now demanding the government become responsive to the publics' needs. I think this disease may not be easy to diagnose, easy to treat, nor easy to cure. Sometimes, permanent damage may occur. There may even be deaths due to Lyme. Reprinted with the permission of Thomas Forschner. Karen Forschner is one of the co-founders of The Lyme Disease Foundation Karen was named "Woman of the Year" by Family Circle Magazine in 1992, "Woman of Worth" by L'Oreal in 1993, "Woman of Merit" by the Daughters of the American Revolution in 1994 and "Woman of the Year" by the Veterans of Foreign Wars Ladies Auxilliary in 1994. She co-produced the LDF's international award-winning children's TV special "Dr. Ticked Off Says: "Do A Tick Check".
Posted at 12:21 pm by pattyknack
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Christine's Battle with Lyme
My name is Christine. I'm 29 years old.
A month ago, I was diagnosed with Lyme disease and am now getting treatment from a great specialist in Boston. Even though this sounds great and I'm really happy now, the road to getting here was the toughest I've ever been through.
I'm not exactly sure as to when I contracted Lyme as I did not have the bulls-eye rash. However, I think it was 6 to 7 years ago when I worked in a day care center. One day, I felt like I was getting the flu. I told my doctor this and she said "Take Advil, it's just stress." Five hours later, I was in the ER with a 102 degree fever and chest pain. I found out that I had walking pnuemonia, so I called my doctor again. She said I got it from the day care center even though none of the kids were sick.
I began getting more and more fatigued and achy as the year went by, but believed my doctor and thought my symptoms were due to stress.. Two years went by...I'd gotten a new job that I loved, got engaged and began planning my wedding. I began getting nerve pain that started in my abdomen and traveled down my right leg. The pain got so bad I was forced to quit my job. I went to three different doctors and they suggested nerve block injections. After a year, the pain slowly went away.
More time passed, my fatigue worsened and out of the blue, I began fainting. Again, I went to see my regular doctor and she said my symptoms were the result of stress from planning my wedding and "maybe I shouldn't be getting married." I was infuriated by this statement, so went to see a cardiologist and had many tests performed. They showed my heart rate and blood pressure sometimes dropped. The cardiologist put me on a regimen of medicines and for awhile I thought "Well, at least I have an answer."
But as time passed, I wasn't getting any better. In fact, I got worse. I was unable to drive a car or work for over a year. I did get married in September of 2004, but my marriage isn't your typical marriage. I have to be watched 24 hours a day due to my fainting spells. During the day, I'm at my parents house and at night, am with my husband. However, there are many nights where I've had to remain at my parents house due to all the concussions I've suffered as a result of fainting.
By July of 2005, I was ready to give up. I was getting so depressed that I was beginning to believe my doctor - that my symptoms were psychosomatic. I finally took her advice and saw a WONDERFUL psychiatrist! The first time I met her, she asked if I wouldn't mind if she ran some of her own tests. She asked me about all the symptoms I'd experienced over the years. She is the one who finally diagnosed my Lyme disease! She said the majority of her patients that are sent to her by their regular doctors either have Chronic Fatigue Syndrome or Lyme Disease. This statement shocked me! It proves how many doctors misdiagnose their patients' illnesses as being psychosomatic rather than having a real and serious health issue!
My psychiatrist has been my blessing and has given me the hope I had lost so long ago. My life is still not back to normal, but I know one day I will be able to drive, work and live a wonderful life with my husband.
Good luck to everyone who is suffering with this horrible disease and stay strong!
Posted at 12:06 pm by pattyknack
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 Welcome to the Lyme Coalition of Northern Wisconsin blog site. Millions of Americans suffer from Lyme disease, yet the general public as a whole knows little about it. It's not merely a disease that makes you "tired and achy" - it's an insidious disease that destroys lives and can be fatal. By sharing our stories, we hope to educate others as to the horrors of this insidious disease that is currently spreading 5 times faster than the AIDS virus. Thank you to those of you who have been gracious enough to share your stories... To learn more about Lyme Disease, please visit my website at www.pattyknack.com
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