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Lyme Disease – A Chronic Battle I Never Saw Coming

March 15, 2018 in Articles, General


There it is—my alarm waking me before the sun has risen. I pry my eyes open, groggy and a bit confused, but then I remember where I am. I’m camped at 9,500 feet with my dad, uncles and cousins in the Rocky Mountains. Any pain I feel this morning is pushed aside as I rush to get my hunting clothes on and grab my gear.

As we drive the truck up the dark mountain, my anticipation builds along with extreme nausea and dizziness for no known reason. I try to block it out of my mind, as I have far more important things to focus on.

Finally, we reach our stop and begin our trek deeper into elk country. “Yikes! Even going downhill is hurting my muscles a lot,” I think. “Focus… focus!”

lyme_diseaseDad leads the way as I push myself to keep up, following closely behind. He is the expert, and I am the novice, imitating his every move. This was what I had been dreaming of since I was a little girl. It was finally my year to be in elk camp with a tag of my very own, and to top it off, I was blessed with the best guide I could ever want.

We walked and walked, tip toeing through patches of woods to peek into the meadows, hoping to catch some elk feeding. Something still doesn’t feel right. My neck feels like someone put their toughest boots on and stomped on it, my lower back is tight and aching, my feet are throbbing, my head is pounding, I’m nauseous, my heart feels like it might explode, and I feel like I haven’t slept in weeks.

“Focus Courtney!” I scream in my head, afraid to admit how bad I feel.

The first day of the elk hunt is over, and we return to camp with an un-punched tag. My dad is still in good spirits, but I can’t help but realize my body is deteriorating more with each day of the hunt, each mile hiked, and my chance of punching my elk tag this year is deteriorating with it.

I go back to my tent and pray to God that He will give me the strength and endurance to continue on this week long hunt and that I might be blessed with my first elk.

The Answers to All My Questions…

I returned to Minnesota with no elk meat for my family that year. Miraculously, I survived two weeks in the Colorado backcountry with a group of men who had never had a woman in their elk camp before. That, in itself, was a huge blessing. I also managed to keep up with my dad, who is as healthy as a horse, covering more than seven miles together on the last day of the season. No one would have realized the condition I was in unless I told them. I’ll share it with you in hopes that you never have to go through what I am fighting to this day.

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With a fever of 103°F and severe pain and stiffness throughout her body, Miller was poked and prodded at the ER, but doctors couldn’t identify the problem.

About two and a half weeks prior to my first elk hunt with a tag, in September 2016, I was admitted to the emergency room due to a severe fever and excruciating pain in my neck, back, legs, jaw, head, etc. You name it, and it was killing me. They did a spinal tap and hooked me up to IV fluids but could not figure out why I had a fever or why I was in so much pain. They sent me home with more questions than answers.

I had experienced some ongoing symptoms prior to the ER visit. I was constantly sick with colds and coughs. I grew extremely tired and weak, having to take naps in my car on my lunch break, and fighting falling asleep at my desk. I started getting a throbbing pain in my head, and felt like I was stuck in a strange brain fog in the mornings. One of the scariest symptoms I experienced was fainting twice while alone in my apartment. The one time, I even collapsed into wooden doors and lost my vision for a bit, but not consciousness.

My body deteriorated to the point that my mom had to stay with me in my apartment and help me in and out of the bathtub and my bed (the only two places I really went). If I so much as sneezed, coughed, or yawned I would start crying from the pain in my head and jaw.

I had seen my primary doctor fairly early on, but she couldn’t figure out what was wrong with me. We did tons of blood work and tests but got no answers.

Fewer than 50% of patients with Lyme disease recall a rash.

Then it happened. I started to get discoloration on the top portion of my left thigh. Over a few days, it grew to several inches in length and felt hot to the touch. I also began getting bright red patches across my back and stomach.

Once my doctor saw the bullseye and disseminated red lesions, she said there was a good chance I had Lyme disease, especially given my outdoor lifestyle. Then I recalled finding a decent number of ticks on me while turkey and deer hunting that year.

I did all the blood tests for Lyme disease, and they came back negative. Yet after researching symptoms online, I was certain that’s what I had. My doctor put me on two weeks of doxycycline. That’s routine practice for doctors in typical health care system, but it’s not effective for everyone, even if you catch it early. Eventually, I was tested a second time for Lyme disease, and this time it came back positive.

A couple weeks after my ER visit, I convinced my family to let me go on my elk hunt. I was just over a week or so into my doxycycline treatment and slowly starting to feel more normal. I was determined I would be ready to roll by opening day of elk.

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Miller and her dad chasing elk in the Rockies.

While I had many ups and downs physically throughout this hunt, I wasn’t consumed by pain the entire time. There were plenty of moments I pushed it out of my mind and enjoyed my time hunting with my dad and the other men in our camp. I learned that I am truly capable of overcoming many obstacles if I put my mind to it. My dad and I had many great moments on this trip that I wouldn’t trade for the world.

However, shortly after finishing my first round of doxycycline, all my symptoms returned, and with a vengeance. They put me on a second round of doxycycline, but this time, my symptoms started getting worse while I was still taking the medicine.

My primary physician later sent me to an infectious disease specialist, which was a complete waste of my time and money. The specialist confirmed I had Lyme disease but said the couple rounds of doxycycline were all they could do for me. She even said, “Maybe over time, it will just heal on its own.”

Unfortunately, Lyme disease can escalate into chronic Lyme disease if not treated early enough or properly, which is exactly what happened to me. Lyme disease is an epidemic issue in the United States and many other countries. It is difficult to test for and widely misunderstood by both medical professionals and insurance companies. This is why I’ve had such a difficult time finding the appropriate treatment that I can afford.

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This isn’t even the HALF of it.

While the standard treatment for Lyme disease is 14-30 days of antibiotics, many times it is ineffective. Lyme spirochetes have the ability to “hide” from antibiotics, and standard treatments often only mask the disease rather than cure it.

This chronic disease has impacted my life in many ways. I used to be able to workout on a daily basis to get in shape for various hunting seasons. I boxed, lifted weights, did cardio, and more. Now, I resemble a couch potato much more than the girl I once was. Even hunting and fishing have become more of a challenge due to my lack of energy, sore muscles and other symptoms. Because of the way Lyme disease is classified, I’ve also spent thousands of dollars out of my own pocket to treat myself, with no guarantee of ever being symptom free again.

I experienced all the symptoms of early Lyme disease and the majority of the symptoms for chronic Lyme disease listed HERE, as well as light/sound sensitivity, tingling/numbness and shooting pains, night sweats, irritable bladder, exaggerated symptoms from alcohol and stomach/abdominal cramps.

An LDo published survey of over 3,000 patients with chronic Lyme disease found that patients suffer a worse quality of life than those with most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis. Doctors don’t agree about the cause of these ongoing symptoms, and the primary cause of this debate is flawed diagnostic testing. There is currently no test that can determine whether a patient has an active infection or whether the infection has been eradicated by treatment.

I’m 23 years old, and right now, my quality of life isn’t looking all that bright. If I’ve learned one thing from this journey, it’s that if I’m ever blessed to be healthy again, I will never take it for granted. I’ll also forever hold onto the memories from that first elk hunt with my dad, and pray to God that Lyme disease won’t make it my last.

To learn more about Lyme disease symptoms click HERE.

Lyme Disease Symptoms – What to Watch For

March 15, 2018 in Articles, General

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If you’ve been bit by a tick, you may start to experience Lyme disease symptoms typically anywhere from 2-30 days after the initial bite. Lyme disease is a clinical diagnosis, meaning that your treating physician will take into account your past medical history and your current symptoms. Additional laboratory tests can be run to determine a Lyme diagnosis, though many tests currently being administered by general practitioners are not very reliable. Many experts believe that less than 25% of patients with early Lyme disease and less than 10% with chronic Lyme are being properly diagnosed.

Also keep in mind that you may or may not even be aware that you were bitten. Ticks inject an anesthetic to numb the bite area so you rarely feel the bite and in some cases they can bite, feed on your blood and drop off without you ever knowing they were there!

If you have ANY of these Lyme disease symptoms or live in an area with a high prevalence of Lyme disease (make sure you read to the end!) then go get tested and request a Polymerase Chain Reaction test, which is currently the most accurate determination of Borrelia infection.

Lyme Disease Symptoms

Always listen to what your body is telling you. Pay close attention to your symptoms, and if you think you have Lyme Disease, don’t ignore it.

Early Lyme Disease Symptoms: 

• Bullseye rash (rash occurs in
less than 50% of patients)
• Flu-like symptoms
• Lack of energy and fatigue
• Headaches, especially at the
base of the skull and neck
• Muscle and joint pain
• Stiff neck
• Swollen lymph nodes

Chronic Lyme Disease Symptoms:

• Extreme fatigue
• Unexplained rashes and allergies
• Migrating pain in arms and legs
• Weakness and/or numbness in the arms
and legs
• Twitching and severe muscle and
joint pain
• Severe or recurring cervicogenic
headaches
• Vertigo, dizziness and poor balance
• Tinnitus or ringing in the ears
• Fainting
• Poor memory and concentration
• Insomnia
• Extreme irritability and frequent
confusion
• Vision problems, including blurred
vision, double vision and floaters
• Heart conditions, including pericarditis
and extreme palpitations
• Panic attacks and mood disorder
including severe depression
• Problems speaking, word retrieval
problems, word block
• Progressive dementias
• Motor neuron disease, similar to ALS
• Gullain-Barre-like syndrome
• Multiple sclerosis-like syndrome

Chronic Lyme disease can manifest itself as nearly anything as you’ll see from the extensive list of Lyme disease symptoms. The bottom line is, if you have any unexplained neurological, muscular, vision or mental issues and you suspect you’ve been bitten by a tick, GET TESTED for Lyme disease, and demand the right test!

HOW DO I GET TESTED?Lyme Disease Symptoms

First, go to your general physician armed with knowledge. The vast majority of general practitioners know very little about Lyme disease or it’s detection and unfortunately what they do know is largely inaccurate. There are direct and indirect tests that can be used to test for Lyme. Direct tests such as the Lyme Dot Blot Assay (LDA) or the Lyme Multiplex Polymerase Chain Reaction – PCR) look for the presence of Borrelia antigens or nucleic acids. Indirect tests (such as Elisa, IFA and the Western Blot) look for the patient’s immune response to Borrelia. It is important to note that not all ticks are infected with the disease, however, the ticks themselves can be tested for Borrelia and other tick borne diseases using the PCR test.

The indirect testing methods are the most commonly used by physicians in the United States and they are highly variable in their accuracy. This is because they look for your immune response to the Borrelia organism and not the actually “bug” itself. Demand the direct testing methods which are much more effective at detecting the Borrelia pathogen and giving you a clinical and accurate diagnosis.

THE BOTTOM LINE…

Lyme disease is a very serious threat to those of us who love the outdoors and spend lots of time enjoying it. I can tell you from personal experience that arming yourself with a great deal of knowledge and being extremely vigilant and careful not to be bit by a tick is vitally important.  I have spent the last 20 years of my life experiencing the long list of Lyme symptoms.  I was misdiagnosed dozens of times and had two “falsely” negative tests that delayed my diagnosis for nearly 15 years.

If you are in the woods or even your own backyard protect yourself. Use tick repellent sprays and wear tick-proof clothing. If you find or even suspect that you or a family member have been bit by a tick, be very diligent for the symptoms of Lyme or other tick borne disease. If you have any suspicions at all, go to a health care provider and get tested using the right test.

If I had known these things 20 years ago I could have avoided literally tens of thousands of dollars in medical costs and my quality of life would have been tremendously better. Lyme disease is scary and it takes a toll on your life and your family. Please take the precautions to avoid getting it at all costs and seek the correct treatment if you suspect that you have this egregious affliction.

Learn how to prevent tick bites and remove ticks HERE.

 

Written by Scott Vance, Union Sportsmen’s Alliance – CEO

Lyme Disease Facts & Myths You NEED to Know

March 10, 2018 in Articles, General

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Until a few years ago, people probably thought Lyme disease was something that happened when you had too many “bottomless cup” margaritas at the local watering hole. But Lyme disease is no laughing matter. Educating yourself on Lyme disease facts and myths can be the difference between you continuing to enjoy a life full of the outdoors, and battling a chronic illness.

According to the Center for Disease Control, Lyme disease is the fastest growing and most prevalent bug-borne disease in the nation with more than 300,000 people diagnosed each year. Many experts estimate less than 25% of new cases are being accurately diagnosed, and only a fraction of chronic Lyme cases are positively identified.

Lyme is one of the most misunderstood, misdiagnosed and, unfortunately, mistreated diseases in the U.S. It is caused by a bizarre organism called Borrelia burgdorferiBorrelia is a corkscrew-shaped bacterium referred to as a spirochete. Because of its unique shape and properties, this bacterium can bore itself into muscles, bones and even nervous system tissues and wreak havoc on its host (you and me).

Lyme is often called “The Great Imitator” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles, joints and heart. Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, crippling arthritis and various psychiatric and mental illnesses, including severe depression.

I spent the last 20 years of my life experiencing the long list of Lyme symptoms. I was misdiagnosed dozens of times and had two “falsely” negative tests that delayed my diagnosis for nearly 15 years. Educating yourself on Lyme disease facts can prevent you from ending up in a situation like mine.

Most people get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people don’t even realize they have been bitten. Once attached, an undisturbed tick may feed for several days. The longer it stays attached, the more likely it will transmit Lyme and other pathogens into your bloodstream.

9 Lyme Disease Facts:

  1. According to the CDC, Lyme disease is the fastest growing vector-borne, infectious disease in the U.S.
  2. The number of cases reported annually has increased nearly 25-fold since National Surveillance began in 1982.
  3. There are five subspecies of Borrelia burgdorferi, over 100 strains in the U.S., and 300 strains worldwide.
  4. CDC estimated cases: 25,000 cases per week, 5,770 cases per day, 822 cases per hour (many experts believe less than 10% of Lyme cases are reported)
  5. There are no tests available to prove that the organism is eradicated or the patient is cured.
  6. Fewer than 50% or patients with Lyme disease recall a tick bite.
  7. Forty percent of Lyme patients end up with long-term health problems.
  8. Fewer than 50% of patients with Lyme disease recall a rash.
  9. Up to 70% of ticks in Lyme-endemic areas are infected.

Find more Lyme Disease facts HERE.

3 Lyme Disease Myths:

MYTH: Everyone with Lyme disease gets a telltale bull’s-eye rash.

Actually, many never develop a skin rash and those that do may not get a bull’s-eye rash.  The Centers for Disease Control and Prevention (CDC) estimate that only 70% develop a skin rash (erythema migrans), but this can vary by region. For example, a 2010 study showed that in the state of Maine only 43% of Lyme patients exhibited this particular type of rash. There are a range of symptoms and it is critical that you are alert to all of them.

MYTH: Antibiotics cure everyone.

While an estimated 329,000 people are diagnosed with Lyme disease each year, statistics show that as many as 20% of patients continue to exhibit symptoms even after antibiotic treatment. While there is controversy about the cause of this symptom persistence (e.g., residual bacteria or auto-immune response), for these patients, the suffering continues.  As many as a million Americans are estimated to be suffering with this condition, referred to as post-treatment Lyme disease (PTLD).

MYTH: If the test is negative, you don’t have Lyme. 

Not so fast … The current “gold standard” diagnostic for Lyme disease is a two-tiered blood test requiring a positive ELISA result. The ELISA measures infection-fighting or memory antibodies against Borrelia burgdorferi, and it misses up to 60% of acute cases of Lyme when antibodies may not be high enough to detect.

Myths courtesy of Bay Area Lyme Foundation

Think you may have Lyme disease? Check your symptoms HERE.

 

Written by Scott Vance, Union Sportsmen’s Alliance – CEO