Friday, July 30, 2010

I Will Beat These Beasts--Lydia Niederwerfer:Part 2

How in the world was I able to afford his fee? The initial consultation for Lyme was 2-3 hours. We had one consultation. He agreed to take the fee in payments so that when I did find a Lyme Literate Medical Doctor, I would be able to see him/her. A day or two later, he called me with a referral of a doctor who was willing to see me. What a relief, and he was only an hour away. The tests confirmed my suspicions. I was found positive for Babesia, Lyme, and Bartonella.

In September 2009 I began antibiotic treatment. The doctor had recovered from Lyme and Babesia as well. He was aware of the CDC and IDSA guidelines; he knew first hand that some of us do not recover as quickly as the guidelines state, for he had experienced this himself. I am grateful for his diligence to help me become well. Although the road I traveled earlier with Lyme was horrible, I was blessed that this time that I did not experience the symptoms all at once that had caused me to become bedridden.

At first, I thought that I could not go through this again because I experienced the sensation of burning if anything touched my skin. With every breath I took, I felt the burning pain. It became very difficult for me to walk once again. I had to bring out the cane and knee braces I had once used. Oh, how I despised that! The night sweats, fever and chills were overwhelming at times. I couldn’t understand how you could be burning up and freezing at the same time. The night sweats drenched my clothes and my bedding every night.

Tuesday, July 27, 2010

I Will Beat These Beasts--Lydia Niederwerfer:Part 1

The Story Begins

After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.

A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills, stiffness, and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.

After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, celiac disease, etc., my central nervous system functions began to go awry. Quickly, I became completely debilitated. It was as if someone poured a bucket of symptoms over my body all at once. The list was endless: severe nerve pain, one stiff hip, uncontrollable shaking of hands and arms, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, chest pains, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of hair, loss of cognition, inability to hold urination, diarrhea, and severe migraines. With each breath my entire body burned. I hoped each breath I took would be my last. I became bedridden, severely depressed and unable to do any work. I had to endure the indignity of having to be bathed and clothed by my husband.

Friday, July 23, 2010

A Diagnosis After 36 Years--Christina Lindell

Please understand that if I had written this a few years back, it would have not only been a breeze, but I would have been thrilled to embark on a project with such a hugely important subject. Writing is my heart. It kills me to say that it is now the hardest thing in the world for me to do. Lyme is in my brain, and my mind is what has paid the biggest price. This is my story, painfully condensed.

In the summer of 1973 I was bitten by a tick. At first the little bump behind my ear didn’t bother me much, but then it started to feel hot. It must have bothered Mom too because she brought me to the doctor to have it removed. It felt like the doctor had stuck a needle behind my ear and I screamed. I was only three years old.

About a week later, I developed encephalitis, an infection of the brain. It began with a fever and a nightmare I could not wake up from. There were bees all around me, stinging and burning my skin. Finally, I opened my eyes to the painfully bright walls of our bathroom. My father sat in front of me, eyes wild and fearful. I wanted to tell him I was awake, but my head hurt and the light was too bright. I closed my eyes and the buzzing in my ears turned to sirens.

Tuesday, July 20, 2010

Another Battered Soldier--Holly Heisey

I’m twenty-four and I’ve been sick since I was ten. I got sick on the first day of fifth grade, and nobody believed it wasn’t because I didn’t want to go to school. A month later my parents pulled me out and I was homeschooled. I went through countless doctors, and that’s terrifying when you’re an adult, let alone ten. I found a nutritionist who helped me get well enough to go back to sixth grade, but by then I had many allergies and physical weaknesses that kept me from really fitting back in.

I stayed mostly healthy until eighth grade, when I got sick all over again. I had to leave school in the middle of the year. I was having panic attacks (of course it was all in my head!), short breath, vertigo, and I always felt like I was going to be sick or pass out. Another round of doctors ensued, one of whom wanted to admit me to a mental facility because he was convinced I was suicidal. Tell that to a fourteen-year-old.

I finished eighth grade at home and continued to homeschool, but I also continued to get worse. Finally, my family found out our home was infested with stachybotris, a deadly toxic mold. We moved, and we have nothing today that we owned before fall of 2001. It was a miracle that we got out relatively unscathed. We thought all our health problems were over.

Friday, July 16, 2010

Trial by Fire--Chris Michael Nimphius: Part 2

Last January on my 23rd birthday I checked into the hospital, as suggested by my neurologist, to have a battery of tests run. I had MRI’s, CT scans, a spinal tap, HIV and AIDS test, and saw an infectious disease specialist. Everything came back stellar except for an elevated white blood cell count. They released me from the hospital, told me I had migraine issues, and prescribed meds.

They suggested I see a balance specialist next, so I had a balance test done. It showed slight damage in my left ear but was at the marginal level to have any impact. The specialists said I had a vestibular problem and needed balance therapy. I went along with it and had balance therapy three times a week.

Each time I went my vertigo increased gradually and the therapist was perplexed that I hadn’t shown any improvement. I decided to go seek a second opinion at the Eye and Ear Infirmary in NYC, one of the best. I took another vestibular test and various others. This time nothing came back at all. I went to the head of the department who was well renowned for making “miracles” happen with his patients. He treated me for four months, again with no substantial gains. A very confident man, he was baffled and told me he was deeply sorry that he could do nothing for me.

Wednesday, July 14, 2010

Trial by Fire--Chris Michael Nimphius: Part 1

Nearly two years ago I was on spring break having the time of my life, partying quite hard as most college young adults do. I remember very vividly when my first symptoms started to manifest. It was the last night of our stay and we had just started out on our adventure towards debauchery.

We finally made it to the club, which was huge and could fit more than ten thousand people. One of my buddies was lagging behind. I told the rest of the people to go ahead and I would catch up with them while I waited for my friend. After some time I was informed that he wouldn’t be joining us, so I went ahead with my plans. I attempted to find the group that had gone ahead without me. 

While frantically looking for my friends, I suddenly became extremely lightheaded, light/noise sensitive, and I thought I was going to collapse at any moment. I was now even more panic-stricken and needed to find my friends. I tried to elicit all the energy left in my mind and body. Finally I located one of my friends and implored him to leave with me. This way if I was going to faint in this strange environment, at least I wouldn’t be alone.

We left the club and decided it was best to stop at a cafe for water. Maybe I was just extremely dehydrated. Much to my dismay this didn’t help. We finally made it back to the hotel, which seemed like an eternity. At least this was a refuge from the all impurities outside. I tried to sleep before we had to catch a flight back home in the morning, but I had no luck. Then the notorious preamble to Lyme started. Suddenly I had flu-like symptoms. I was freezing, yet sweating profusely at the same time.

Monday, July 12, 2010

A Series of Miracles--Victoria Bylin

“Something terrible happened to you.”

These are not words you want to hear from an ophthalmologist. At the time I was sitting in his fancy chair in a dark exam room, my eyes red and hurting, and my vision distorted in the way of pebbled glass. I had no idea at the time and neither did the ophthalmologist, but this was the beginning of my encounter with Lyme Disease. By a series of coincidences--I’d call them miracles--I was blessed to be diagnosed early and treated successfully.

My Lyme ordeal began while I was working at the computer. I blinked and thought, “I need new glasses.” A few moments later I looked in a mirror and saw that both eyes were bloodshot. I figured I had conjunctivitis and met a friend for lunch as planned. By the end of the meal, my eyes weren’t just red. They hurt every time I changed my focus. That evening I developed the strangest fever I’ve ever had. It spiked at 103 degrees and then disappeared.

Thursday, July 8, 2010

I Will Make It Through--Tiffany Gonzalez: Part 2

What I saw and heard next changed my life. The news segment was about a documentary movie called Under Our Skin. They were saying how all these people were misdiagnosed for years, and eventually found out they had Lyme Disease. I couldn't believe my ears! While watching, I felt an instant connection with these people. They sounded like me; our stories were so similar. I felt like that was me on the TV--but wait--I had tested NEGATIVE for Lyme in the past.

The next day I couldn’t get the news segment out of my mind. I was ridiculously giddy. My naive self feels stupid about my excitement now. If only I knew what I was in for. I did online searches for the movie and looked up Lyme Disease in Chicago. I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn't really expect a call back. No one believed me before, right? Why would someone call me back? Well, I got a call back from Lauren within a half hour. Wow! It turned out she was in the news segment. Her whole family has Lyme Disease; she lived right here in the suburbs. She directed me to where I could go for the much more accurate test called a Western Blot Blood Test done by IGeneX.

That day, I sent out a FB message and email to my friends, inviting them to come see Under Our Skin with me. No one responded. Who can blame them? They didn't know anything about this "Lyme" thing, and it didn't affect them, so why should they care? I get that. I do. At least my little sister Adriana came with me. Thank you! We saw the movie and I think I sobbed through most of it. I felt like the people on the screen were telling my story, without even knowing me. It was a crazy experience.

Wednesday, July 7, 2010

I Will Make it Through--Tiffany Gonzalez: Part 1

In the summer of 2004, I was bitten by a tick. I was told by my doctor’s office that I had nothing to worry about because the tick hadn't been in me long enough to do any harm. Usually the protocal is 24 hours; if it's in you for less time they THINK you wont have a problem. They told me to keep an eye out for the classic "bulls eye rash." If I got that, call them immediately. I never got the rash, so I didn't worry.

Not too long after the bite, I started with horrible headaches, abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue. Neurologic and cognitive issues became out of control. Things got much worse after a bad roll-over car accident I had in 2006, jolting my entire health system out of control.

Last summer (2009), I started forgetting what I was saying in the middle of every conversation. I started making myself talk really, really fast, just so I wouldn’t forget what I was talking about. My throat felt like it was closed up. I'd choke for no reason. I began dropping things, too. My hands twitched like crazy and I would sit on them all the time so no one would notice. They also began to cramp up and close. I would make myself hold large objects thinking that I could prevent the joints from wanting to close up. I had difficulty holding the steering wheel. My thighs trembled all the time and my knees would give out.

Friday, July 2, 2010

Be Your Own Advocate--Angela Coulombe

In August of 2007 I had just completed three things on my life’s “to-do list."
1. Kick through a solid 1/2″ piece of pine to obtain my brown belt in Tae Kwon Do
2. Appear on stage in a solo dance performance
3. Run the Beach to Beacon, a 10k race (which I had completed in 54:51.8 wah-hey!)

On top of a full-time job and raising two boys, I’ve always been a bit of an athlete; as a child I did gymnastics, tennis, dance, any sport going. As an adult, I ran, went to gym regularly, attended dance class and participated in TKD three times a week. I’d always been physically fit, cherishing this as my link to sanity and well being.

First Signs of Lyme Disease

The day after completing the Beach to Beacon, Aug. 4th, 2007, the area surrounding my right knee started swelling. Having injured my right knee several years earlier in another running incident, I thought, “No big deal. With a couple weeks of OT and rest, I’ll be fine.” I started therapy but after three weeks the swelling hadn’t gone down. During this time, I also started to notice that my shoulder joints were becoming sore, and it was difficult to sleep on either side due to the shoulder pain.

The OT’s were baffled as to why the swelling in my knee, now very noticeable even through trousers, wasn’t getting better. They scheduled an MRI. The pain in my leg fluctuated from highly uncomfortable to completely unbearable. I had been on Aleve and ibuprofen for weeks without it touching the pain or swelling, and I hoped the MRI would finally pinpoint the problem.

Thursday, July 1, 2010

Living on Prayer and Team Work--Jessica Sundeen

My name is Jessica Sundeen. I am 29 years old and a single mom of three wonderful children. I've been suffering from Lyme Disease and Bartonella for almost nine years.

I was finally diagnosed in September 2007 after seeing numerous doctors, neurologists, chiropractors, physical and massage therapists, and several E.R. visits. Through all of these consultations, I was prescribed numerous medications that were harmful and unnecessary, and was diagnosed with many disorders that were not valid.

I moved to Grand Rapids in August '07, and I couldn't bear the symptoms anymore. I couldn't get out of bed. I couldn't get on the floor to change my son's diaper. I knew I had to take care of my children, so I worked full-time as a Pharmacy Technician. I finally got the answer to my problems in September, though I didn't know what the future was going to be like. I thought I could just take the antibiotics and be cured. I was wrong.

 The last years have been a nightmare. I'm still scared of the unknown. I've had numerous doctor visits, spinal taps, blood patches, blood work, brain images, trips to the E.R. and operating room, hospitalizations, PIC lines and Hickman ports. I've had comas, stroke, dementia, terrible fatigue, seizures, tremors, heart palpitations, Bell's Palsy, joint pain, muscle pain, tremors, migraines, elevated temperature, neck pain, back pain, tingling, numbness, stabbing pains, anxiety, buzzing in my ears, vertigo, ear pain, and fainting.

I have difficulty thinking, and issues with absorbing new information. I get lost all the time. I have word block and mood swings. It hurts to sleep. My liver, kidneys, and bladder shut down, and my lungs are depleted. I've been through the removal of my gall bladder, and I've been through malpractice. I have sensitive skin, broken capillaries, inflammation and nausea. I take two IVs a day and around 25 medications a day. In March of 2010 I was back in a wheel chair. My kidneys, liver and GI tract aren't doing well. We changed ABX IVs and other oral meds and and it's taking everything out of me. These are all the things I go through because of getting bitten by a deer tick.