Author Marlena Lewis Writes About Life Struggles And Lyme Disease

Marlena Lewis
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Author Marlena Lewis Writes New Book

Marlena Lewis, a small town author from Selma, Alabama, writes about her life struggles and her diagnosis of Lyme Disease in her book entitled, Don’t Give Up,

Marlena was a vibrant and energetic young lady, full of adventure, when she decided to join the military at age 21.

She flourished in her career, and 15 years later she was diagnosed with Lyme disease. Not only did this, as well as other dramatic circumstances, change her life, but she felt as though her dreams were ruined.

Through her faith and trust in God she overcame it all and writes this testimony to share with the world her hope, determination and faith! Her story is truly encouraging and a must read!

Her book is available at the links below:

My Thoughts On Marlena’s Book

Marlena’s book is going to impact so many people for good! Knowing her struggles with Lyme disease, and living with Lyme disease myself, I couldn’t wait to read about her experiences. She was so kind to send me a signed copy of her book.

Marlena is genuine and kind and her story is so moving and powerful.It was a great reminder to me that with God all things are possible!

I truly hope you are able to read it.

The Takeaway

If you’d like to learn more about Lyme disease you may want to check out:

Have you lived through a difficult experience or illness? Please share below in the comment section. I love hearing from you!


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Is Chronic Lyme Disease Real? Part 2

chronic Lyme disease
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Chronic Lyme disease is a hot topic in the news lately.

Several celebrities, including Avril Lavigne, Ashley Olsen and Yolanda Foster recently announced they have Lyme.

According to the CDC, over 300,000 people are diagnosed with Lyme each year. And countless others have it, but haven’t been diagnosed yet.

Just The Facts, M’am

chronic Lyme diseaseIf you get Lyme and are treated promptly with an appropriate dosage of doxycycline, your odds of making a recovery may be good.

However, we’re talking about people, including myself, who are not treated promptly and suffer debilitating, long-term effects of the disease.

For me, it took 18 very long months for multiple doctors and specialists to figure out what was wrong with me.

This was despite my insistence that I wanted to be tested for Lyme because I had become severely ill after getting bit by 2 tiny ticks one spring.

I eventually tested positive for Lyme and tularemia on different tests, including antibody and the Western Blot. I was “CDC positive”.

You can read more about the need for better testing here.

The Hippocratic Oath

Before my ordeal I didn’t realize things like this really happened to patients. Isn’t part of the oath physician’s take, the Hippocratic Oath, to “first do no harm”?

So how could so many people be suffering from ongoing Lyme symptoms despite visiting numerous doctors?

According to eyeonannapolis.net:

In 2014, there were 26,000 confirmed cases of Lyme Disease in the US, with an additional 6,000 cases that are probable but unconfirmed. The CDC estimates that over 300,000 people are diagnosed with Lyme Disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, six times that number of people diagnosed with HIV/AIDS, and more than nine times the number of people facing Zika virus.

Lyme Lessons

I certainly don’t have all the answers, but I’m learning much through this journey.

I believe God brings good out of bad situations because I’ve seen it.

One of the most helpful things I’ve learned is how to advocate for my health, and the health of others.

People who are suffering with a debilitating illness need kindness and compassion. If you’ve been there you know what I’m talking about.

However, hundreds of thousands of Americans are diagnosed with Lyme each year. The painful truth is that way too many of these people are diagnosed months or years later, giving the Lyme bacteria, borreliosis burgdorferi, time to wreak havoc on a body.

This is often called “chronic Lyme”.

The CDC refers to lingering Lyme symptoms as “post-treatment Lyme disease syndrome”, or PTLDS.

But, it really doesn’t matter (to me) what you call it. I’m not saying it’s not important, but just that we need to focus more on the people who are suffering.

The fact is that debilitating pain and the myriad of other Lyme symptoms are all too real.

If a patient is suffering physically they deserve proper medical care that’s covered by insurance.

“Is Chronic Lyme Disease Real Or Not?”

That is the million dollar question. And while the debate rages on I want to encourage us to keep our focus on the hundreds of thousands of people who are suffering. 

Because at the end of the day, what or who really matters more than people?

chronic Lyme disease
People matter most.

Additional Info About Lyme

Please feel free to check out my story:

If you didn’t read part 1 in this series, you may want to read it here:

Is Chronic Lyme Disease Real? Part 1

And if you’d like to learn more about Lyme you may want to check out:

 

Do you or someone you love have Lyme disease?

Please share your comments and questions below. I love hearing from you!


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7 Tips For Coping With Chronic Illness

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This article was originally published on GriefLossHope.com, a website dedicated to sharing stories of grief and loss and giving hope and encouragement to help others who are going through similar situations.

Having a chronic illness can impact your life in countless ways. The life you knew before your illness may seem like a distant memory, especially when you’re dealing with many symptoms and concerns.

You could in constant pain and unable to get a good night’s sleep. You might have to quit your job and suffer financial problems.

Your appearance may change. Or you may look the same, making it even harder to explain your illness to the outside world. Your interpersonal relationships can change, when suddenly your spouse or loved one takes on the roll of caregiver.

All of these changes can cause stress and strong feelings of anxiety, fear and anger. Many people feel a lack of control and uncertainty about the future.

According to the U.S. National Center for Health Statistics. chronic disease lasts more than 3 months, cannot be prevented by a vaccine or cured by medicine, and does not disappear.

I have learned first hand what it’s like to have a chronic illness, beginning in the spring of 2012.

My Journey From Health To Chronic Illness

Before the illness I was healthy and active, a wife to my wonderful husband, mom to four amazing kids, teaching Special Education full-time at a local public school.

But, then I was bit by 2 tiny ticks and everything changed.

I initially became so sick with a mind-numbing headache and crippling nausea that I was in bed several days trying to recover. I was so weak I could barely walk. My coloring was pale and ashen. It felt like the worst case of the flu I’d ever experienced. I was so out of it that I don’t remember much from those few days.

Unexplained Symptoms

When I had recovered enough to go to the doctor I asked him about Lyme disease. At this time I didn’t know much about it, other than it was a tick-borne illness.

The doctor asked if I’d traveled to the northeastern United States, but the furthest I’d been that direction was North Carolina. He then told me, “You can’t get Lyme disease in Missouri”. He said I had “tick fever”.

Tests were not ordered. Prescriptions were not written.

The doctor told me it would take time, but I would feel better eventually.

But in the months between the tick bites and my eventual Lyme disease diagnosis I felt like I had the flu nearly every day.

As a teacher, I was around children all day. Inevitably, I came into contact with many germs on a daily basis.

I was exposed to many illnesses over the years due to having four children of our own. And I didn’t remember getting sick so often. In fact, my resistance to illness had always been strong.

So I initially thought perhaps I was getting sick a lot due to exposure to all the germs I came into contact with . I usually just pushed through my illness knowing my family and students were depending on me. I figured I’d improve with time.

But, as the weeks and months passed, I began to experience other concerning symptoms I couldn’t ignore. An unrelenting pain began coursing throughout my entire body. The pain was so strong and constant I couldn’t sleep.

I felt exhausted all the time, had trouble breathing, and experienced frequent, intense migraines.

Lethargy and extreme weakness became the norm.

I developed a heart murmur and had frequent heart palpitations, even while lying in bed.

Memory Problems And More

And I started forgetting things and stumbling for the words I wanted to say. The brain fog was so great at times it was starting to worry me.

I was driving one morning and came upon a traffic light feeling confused. As I sat at the intersection a few seconds, I struggled to remember whether the green or red light meant to stop or go. The driver behind me showed frustration with my indecision. He started honking for me to go.

Also, I recall getting lost a few times when I was driving.  And I started calling our children by the wrong names.

I wondered if I was getting Alzheimer’s.

During these 18 months leading up to my diagnosis I went to multiple doctors including several specialists. They gave me a variety of tests and innumerable blood work all in an effort to figure out what was wrong with me.

I was placed in a Holter monitor for 36 hours to test for heart problems.

My doctor ordered months of Physical Therapy due to muscle weakness and wasting. I lost 20 pounds in a short time for no apparent reason.

My doctor and Physical Therapist expressed concerns about Multiple Sclerosis. Thankfully, I was tested and MS was ruled out.

Searching For Answerscoping with chronic illness

I was diagnosed eventually with multiple chronic and autoimmune conditions including:

  • Sjogren’s syndrome
  • Fibromyalgia
  • Chronic Fatigue Syndrome
  • Mixed Connective Tissue Disease
  • Tularemia (another tick-borne illness)

I had multiple allergic reactions to a variety of foods, ran a fever nearly every day and would get hives and strange rashes on my face, neck and torso (where the tick bites occurred).

I developed mild dyslexia for a time and had difficulty reading numbers. As an avid reader I developed a great frustration when reading text.

Around the same time I started having twitching and tremors in my hands, arms, legs and abdomen.

I recall one time when I had been bedridden for several days, running a high fever and missing several days of work.

I could barely walk anymore without extreme effort and felt as though I was dying.

And I didn’t understand why all of this was happening. I had always been so healthy before the tick bites.

I wanted to find out the root cause of my illness. But each time I went to the doctor, it seemed like they only wanted to treat my myriad of symptoms. It was incredibly frustrating.

But I knew everything had to be related to the tick bites. And I persisted in sharing this with my doctors until they listened and gave me the recommended tests.

Psychological Stages Of Chronic Pain And Illness

According to Jennifer Martin, PsyD, there are Seven Psychological Stages of Chronic Pain and Illness:

  • Denial
  • Pleading, Bargaining and Desperation
  • Anger
  • Anxiety and Depression
  • Loss of Self and Confusion
  • Re-evaluation of Life, Roles and Goals
  • Acceptance

I found myself going through these stages, sometimes between two or three at a time.

Questioning God

At this point I started losing hope in ever finding out what was wrong with me.  And I began questioning God.

I asked Him, “God, if you truly love me then why is this happening to me and my family?” I felt confused, angry and forgotten.

I’m humbled to admit I reached this low point in my life journey. I never would have predicted that I’d one day question the very existence of the God I’d believed in and loved as long as I could remember.

Nevertheless, it’s part of my story, and I want to be real. 

Facing my health crisis tested my limits. And I was confronted with my mortality.

I now believe that God was testing my faith throughout my illness. Sometimes I kept my eyes on Him, and sometimes I was stubborn and went my own way.

Isn’t it amazing how we can learn so much from the past, but when we’re living in the moment it isn’t always that clear? (At least this has been my experience)

He Was With Me All Along

Lately God has shown me how He was there for me, even when I was living through the most painful days.

I see now how He has been with me every step of the way, when I was crying out to Him for help and healing — and even when it seemed like God was being silent.

As God reveals Himself to me I see now that part of my story is a renewed faith in Him and hope for His plans for my future.

 I love, “Be strong and courageous. Do not be afraid or terrified because of them (or what you’re going through), for the LORD your God goes with you; He will never leave you nor forsake you (emphasis mine)” (Deuteronomy 31:6).

I’m thankful He promised “He will never leave you nor forsake you”. I love what Jon Bloom says about our human perceptions:

And when we feel forsaken by God we are not forsaken (Hebrews 13:5). We are simply called to trust the promise more than the perception.

coping with chronic illnessIn the midst of the trials, and despite His faithfulness to me and our family, I still felt alone much of the time. I learned this is common for people confronting chronic pain or illness.

I believe God was and is saying to me , “Take up your cross and follow me…(no matter what) (emphasis mine)” (Matthew 16:24).

I may be a slow learner, but I’m so thankful for His grace and patience with me through it all. And I’m looking forward to what He’s going to do in the coming years. He continues to bring beauty from ashes.

My illness has taught me to take time to slow down (although this is still a challenge). I’m learning to refocus my priorities. For me, this includes prayer and having real, meaningful conversations with the people I love.

I hope you will learn from my mistakes and be encouraged in whatever challenges you experience in life.

coping with chronic illnessTips For Coping With Chronic Illness

1. Educate Yourself

Read, study and learn as much as you can about your condition or disease. While doctors are highly trained professionals, please conduct your own research before believing everything you hear.

I’m pleased with the team of doctors managing my medical care and treatment. If you aren’t happy with the level of care you receive consider getting a second opinion or switching doctors.

Before I have an appointment I make a list of questions to ask the doctor. This helps me be more efficient, prioritizing my essential questions first to make sure they’re addressed.

Also, consider using the internet to research. Sometimes the internet gets a bad reputation for providing hokey information. But, if you search medically reputable websites, I’ve found you can learn so much useful information.

I’m a bit of a research nerd, so this process is actually fun for me. If you’re not sure what sites can be trust, you may want to ask your doctor for recommendations.

2. Express Gratitude

Say “thank you” to your loved ones, friends, and family. Being chronically ill isn’t easy for them either, especially if they are taking on more responsibility.

My dear husband has helped take our children to multiple practices and events. This is in addition to his full-time job as a High School Principal. He found it difficult to see me sick. But he cared for me throughout my most difficult days. I’m forever grateful to him for his love and support.

In addition to expressing gratitude to others, I recommend keeping a Gratitude Journal. I try to jot down one or two things I’m thankful for.

Sometimes I’ll write down a favorite verse, Motivational Quote or Power Phrase. I can come back later and read what I’ve written for encouragement and reflection.

3. Do Not Let Your Illness Define You

You can take charge and manage your disease instead of letting it define you. In the midst of chronic illness, do not lose your identity.

Face your fears. Take one day at a time.

Don’t give into the temptation to have a pity party.

Instead, reframe your negative thoughts.

Think of a way to help someone else, even if you are bedridden. Maybe you could text or call an old friend or loved one who is facing their own crisis. Strive to be an encouragement to others.

Keep moving forward.

4. Give Yourself Grace

A wise friend gave me this advice when I was in the throes of my Lyme battle. I was trying to keep up with my duties as a wife, mom, daughter and friend.

But it was not possible for me to maintain the level of busyness I’d been accustomed to my entire life.

I had to learn to give myself grace. When feelings of guilt would creep in (because I was not able to do many of the things I did when I was healthy) I had to remind myself of this. I had to find a new normal.

Releasing myself from the pressure of being a do-it-all wife and mom allowed me to focus on what was really important.

5. Make Healthy Choices

Follow a healthy diet. Eat plenty of fresh fruits and vegetables.

If necessary, lose weight. (17 Ways To Lose Weight Faster can help you get started.)

Get fresh air and soak up the sun to increase vitamin D production. Exercise, if possible, to keep your body strong and flexible.

coping with chronic illnessConsider using essential oils as a natural treatment for pain and insomnia.

Learn how coconut oil, apple cider vinegar and other natural ingredients can help improve your health.

Look into intermittent fasting and find out if it might help you with symptoms.

6. Be An Advocate For Your Health

This is one of the most essential things I’ve learned. When I was going through the most serious, painful time of my illness no one could tell me what was going on.

The doctors and specialists prescribed multiple prescriptions (many of which I never took). One suggested watching a video about walking. They told me to get a massage, get more rest, eat a gluten-free diet etc.

They meant well, but their suggestions didn’t address the root cause of my illness.

Thankfully, (albeit 18 months later) I tested positive for Lyme disease and other tick-borne illness co-infections.

This was a turning point in my illness.

We felt relieved to have an explanation why my body was deteriorating. Even though no one wants to hear they have a chronic illness, we finally knew what we were dealing with. And that helped bring peace to the situation.

7. Seek Support

Building a support system is vital. Talking with supportive family and close friends can help. You might consider joining a support group or message board where people who have the same condition share experiences and hopes for the future.

I have a few friends who have Lyme disease. We communicate via Facebook, email and talking on the phone. We share our progress and treatments that have helped and encourage each other.

If you’d like to learn more about my story you may want to read:

Also, you may like to read about The Spoon Theory in Chronic Illness: What’s A Spoonie Anyway?

Can you relate to any of the Psychological Stages Of Chronic Illness And Pain?

Do you have more tips for dealing with chronic pain and illness? Please leave your comments below. I love hearing from you!


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Celebrities With Lyme Disease

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Are you a “news junkie”?

Recently, I’ve seen several stories in the news about famous people with Lyme disease.

As more and more people come forward sharing their story it brings much-needed awareness and can give hope to others.

Celebrities With Lyme

I’m not typically that into celebrity news, but I’m curious about reading these particular stories.

I like to keep up with current events and medical developments about Lyme. As it continues to affect more people I believe we’ll hear more about it. And this may be part of what it takes to get better diagnostics and testing for patients.

Yolanda Foster

I recently ran across an article about model, Gigi Hadid who was honoring her mother, Yolanda Foster.

Yolanda and her 2 other children recently announced they have “chronic Lyme disease“.

Disregard For Human Life

 One man, “Dan K” insensitively remarked below the article, “Chronic Lyme disease doesn’t exist.  Please stop this ‘awareness’ campaign lol.” 🙁
celebrities with Lyme
photo courtesy Yolanda Foster Instagram

Mr. Dan K’s comments make my stomach turn.

One might say that the comments reflect poorly on him, but don’t affect the Lyme crisis. And there’s truth to that, to be sure.

But it also points to the stark difference in perspective between the Lyme patient who is struggling to survive and the vocal, yet uneducated person who seeks to bring others down when they are physically weak and hurting.

Callous comments like these perpetuate misunderstanding and lack of empathy for people who are fighting for their very lives.

They need:

  • support
  • hope that they can get better
  • proper diagnosis
  • timely and adequate treatments
  • appropriate insurance coverage of medical costs

For me, ignorant comments such as these strengthen my resolve to bring a voice to those impacted by tick-borne illnesses. But it’s also a good reminder that we need to check our sources before believing everything we read on the internet.

When I returned to read the article a second time I noticed his unkind remarks were removed. 

Living Out Lyme Disease On Reality TV

Yolanda has fought her Lyme battle in the public eye on a reality TV show, The Real Housewives of Beverly Hills. Although I’ve never seen the show (we don’t have cable TV), a friend told me about some episodes where she was very ill and receiving IV treatments for Lyme.
One of my doctors I see for LDI (low dose immunotherapy) is the same one she and her kids go to.

She recently left the show to focus on her health and “restoring privacy” to her family.

I appreciate all that Yolanda and others have done to advocate and bring greater awareness to the seriousness of Lyme.

Other Famous People With Lyme

celebrities and Lyme
Ticks can carry Lyme disease, which is caused by Borrelia burgdorferi bacteria.

In recent years, more celebrities (and famous people) have come forward about having Lyme:

  • Avril Lavigne
  • Former US President, George W. Bush
  • Daryl Hall, of Hall and Oates
  • Alec Baldwin
  • Ashley Olsen
  • Richard Gere
  • Ben Stiller
  • writer, Amy Tan
  • Debbie Gibson
  • Jamie Lynn Sigler

Some are still battling ongoing symptoms, while others who were promptly treated have, thankfully, recovered.

Avril Lavigne

In a recent interview with People magazine, Avril Lavigne said,

I felt like I couldn’t breathe, I couldn’t talk, and I couldn’t move. I thought I was dying.

If you have Lyme you might relate to this. When I was bedridden, in the depths of my illness I remember experiencing these same things and telling my husband I thought I was dying.

In the following video Avril Lavigne shares more about her experience:

The Takeaway

Celebrities have a platform to reach lots of people.

Some prefer privacy with their health struggles, and that’s understandable, especially when many of their private lives are photographed for the world to see.

But in the media-obsessed world we live in, celebrities have a unique opportunity to influence, encourage and educate others about Lyme. And this brings greater awareness, something which is long overdue and desperately needed.

celebrities with LymeCan you think of other famous people who have Lyme? Do you or someone you love have a tick-borne illness?

Please share your thoughts below in the comment section. I love hearing from you, friends!

If you would like to read more about Lyme disease you may want to check out:

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Lyme Disease Awareness

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May is Lyme Disease Awareness Month. So, I wanted to compile a list of resources that would be helpful to anyone wanting to learn more about Lyme disease and protect their loved ones.

If you live anywhere in the United States (or many other countries throughout the world) this is essential reading.

Despite what you may have heard, you can get Lyme disease anywhere there are ticks because ticks have no borders.

People, pets and ticks all travel, so the disease is not confined to one particular area. It is prevalent throughout the world. It is crucial to know the facts so you can protect your loved ones from suffering the debilitating effects of Lyme.

Lyme Disease Resources

I’ve gathered a list of articles I’ve written about Lyme and additional resources to share information I believe is imperative to everyone. If I can help prevent even one person from going through this crazy Lyme thing I sincerely want to.

  • Read Warning: Lyme Disease Is Spreading Faster Than AIDS to learn why we should be more concerned about Lyme disease than ever before. Also, learn how to prevent getting Lyme.
  • Lyme Disease is known as the “Great Imitator” because the symptoms are the same as many other diseases and conditions. Find out The Signs, Symptoms And Stages Of Lyme Disease.
  • You might want to check out Is Chronic Lyme Disease Real? Part 1 to learn about the controversy surrounding the chronic Lyme disease debate.
  • Find out about The Spoon Theory in Chronic Illness: What’s a Spoonie Anyway?  These articles can help you better understand what it’s like to have a chronic illness, such as chronic Lyme disease.
  • If you’d like to learn about my personal history with Lyme disease, please read Living With Lyme Disease, Part 1 and Living With Lyme Disease, Part 2.
  • If you want to read more personal stories about people with Lyme disease, Kelly has compiled a huge list of Lyme disease bloggers. You can visit their sites and read about their experiences.
  • In The Shocking Truth About Forgiveness And Your Health I share some of the obstacles I (and thousands of other “Lymies”) faced when I literally felt like I was dying but couldn’t find a diagnosis or treatment in the local medical community. It was an emotional roller coaster and made it so challenging for me and my loved ones to keep hope alive. Thankfully, I was eventually able to find several excellent doctors who recognized my symptoms. They accurately diagnosed me with Lyme and other tick-borne diseases (based on positive diagnostic tests and a clinical diagnosis) and treated (and are continuing to treat) me.Lyme disease awareness
  • You can also read more about my experiences in Make the Journey Beautiful. Sometimes life deals us lemons and we have to decide what to do.
  • Another excellent Lyme disease resource is the ILADS website.
  • A powerful documentary film about Lyme disease is Under Our Skin. When I first heard about the film a couple of years ago it was available to view for free online. However, now it appears that it is only available for purchase. Either way, I would highly recommend it. And they now have a sequel, Under Our Skin, 2 Emergence and I’m hoping to watch it soon. (You might like to watch the trailer below.)

The Takeaway

Lyme disease is a very real and growing problem in the US and worldwide. I hope the resources above help to educate and bring awareness to Lyme symptoms and how the disease can be prevented.

There are advances and discoveries being made in the field of Lyme research. But we have a long way to go to provide better diagnostic testing and treatments.

There is hope for people who have Lyme disease, as well as loved ones who help care for them. We can and will get better and help others do the same!

Please share this post with everyone you know via the social media buttons to help spread awareness and help fight Lyme.

Please share your experiences, comments and questions in the comments below.

Check out the compelling movie trailer to Under Our Skin, 2 Emergence below.

 

 


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Is Chronic Lyme Disease Real? Part 1

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The Lyme Disease Controversy

This morning I read a disturbing article written by David Heitz.  I cannot verify his credentials, but he describes himself as a freelance writer who specializes in health/LGBT reporting.

In his article, entitled, No, You Do Not Have Chronic Lyme Disease (yes, that really is the title) he attempts to make a case against chronic Lyme.Please note, the article is written on a health website, healthline.com. However, the author makes many medical claims about Lyme disease without providing resources or research to support them.

On the other hand, the International Lyme and Associated Diseases Society (ILADS) is an organization that consistently supports its claims with research. They are highly regarded as experts in the education and training of physicians who care for patients with Lyme disease. They have this to say about chronic Lyme.

A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.

This is in stark contrast with Heitz’s article.

Fact And Fiction

There are many misleading statements in the article, like this one,

The number of Lyme disease cases in the United States more than doubled from 1995 to 2009, to almost 30,000, according to the IDSA, but the U.S. Centers for Disease Control and Prevention (CDC) estimates that Lyme disease cases may be up to 10 times higher than reported.

While the numbers show information provided by the CDC’s website, the author fails to mention these numbers (up to 300, 000) are for the reported Lyme cases from only one year. If someone didn’t know this, he or she might assume that there were up to 300,000 cases of Lyme, in the U.S., total.

No wonder there is so much controversy about Lyme!

He also says,

Lyme disease from a tick bite can be cured with a short course of antibiotics.

While it is true that many cases of Lyme disease can be eradicated if the patient receives proper treatment promptly, his statement suggests that anyone with Lyme simply needs to take “a short course of antibiotics” and he or she will be cured.

This is like a doctor telling someone ” You can’t get Lyme disease in (fill in the blank with your city or town).”

Been there. Done thatis chronic lyme disease real

Comments like these are simply not tru and perpetuate misunderstandings about the harsh realities of Lyme.

As a result, there is a lack of empathy for people who are in a real struggle. This is clear in the title to Mr. Heitz’s article.

A fellow blogger from WinonaLyme.com read his article too. She commented,

With something as controversial and complex as Lyme disease, you should treat it with the utmost respect.  Instead he dropped it, stomped on it, added a sneering snobby title, then slapped it up on the internet.

Ahem…I couldn’t agree more.

It’s no secret there is great controversy over Lyme disease, including

  • diagnosis
  • treatment protocols

But I’d like to share my thoughts on one particularly heated controversy.

Is Chronic Lyme Disease Real?

It depends on who you ask. If you ask the Centers for Disease Control (CDC) they prefer to call it “post-treatment Lyme disease syndrome”.

But, if you ask someone who has Lyme who has had to quit their job due to the severe nature of their ongoing (aka chronic) illness their answer would probably be an emphatic, “Yes, chronic Lyme disease is real!” (raising my hand up high here)

Personally, it doesn’t matter that much to me what we call it (even though Chronic Lyme Disease is a fitting description).

But, maybe we have bigger fish to fry…like trying to find a cure for Lyme for every patient.

So…

Potato, potahto,

Tomato, tomahto.

I’m not saying the the “chronic” issue is not important at all, but I do think there are so many Lyme-related issues that are worthy of our attention.

Issues, Attitudes And Beliefs Behind The Lyme Debate

In my humble opinion, the problem is more about the issues, attitudes and beliefs behind the debate. These factors can have a big impact on our understanding.

What matters most is that we acknowledge:

  • Lyme disease is real.
  • The disease is not cut and dry.
  • Hundreds of thousands of people are diagnosed with it each year, and many of them were sick for a long time before their diagnosis. And often these people will continue having health problems for a long time (chronically).
  • These people need and deserve compassion, understanding and support.
  • Most chronically ill Lyme patient’s care is not covered by medical insurance costing untold amounts, causing families to have to sell their possessions and homes, and sometimes declare bankruptcy to afford the costly, out-of-pocket treatments.

is chronic lyme disease realThis helps the public understand and empathize with other people who are suffering with Lyme (just like we would empathize with someone who has cancer, or heart disease, or is homeless, or has lost a loved one).

For example, what about people who lose their home (because they can’t work to pay the bills) and have to file bankruptcy due to the toll of Lyme disease? This really happens to hardworking, good people, but you’d never know it from reading Weitz’s article.

And how about those whose health insurance doesn’t cover the treatments they need to get better, and they’ve spent their life’s savings simply trying to survive?

Although I was diagnosed with Lyme disease (according to CDC standards) the majority of the tens of thousands of dollars my family has spent on my necessary treatments have been out-of-pocket.

What Is Heitz Saying And Why Is He Saying it?

Is the author saying we (people with “chronic” Lyme, or whatever you choose to call it) don’t exist?

Or is he saying our lives don’t matter?

He is the only one who knows for sure. But I will choose to believe he cares about other people, even though this isn’t reflected in the article. Much of what he wrote could be due to misunderstanding.

We can all be susceptible to believing falsehoods perpetuated by the media. But reporters and writers also have a responsibility to research topics thoroughly before presenting them as truth before the public.

After reading the article I went to the bottom of the page to read the comments. But, I was surprised to find that there weren’t any. There isn’t a link to leave a comment either.

But, a statement at the end of the article asks readers, is chronic Lyme disease real

Was this article helpful?

I answered “no” and sent them a return email detailing my reasons and expressing my concerns. Woah, am I coming out of my shell or what?!  😉

I’m anxiously awaiting their reply and will follow up and share with you when I receive it.

** Update:  It’s been nearly 3.5 months since I contacted healthline.com about their article. I have not heard back from them.

Do you know anyone who has been sick with Lyme disease for a long time? What are your thoughts about Chronic Lyme Disease? Do you believe our attitudes and beliefs shape our understanding?


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The Signs, Symptoms And Stages Of Lyme Disease

signs symptoms stages of lyme
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Lyme Disease

Lyme disease has been a hot topic in the news lately. This is likely because it is increasing at an alarming rate.

Between the 2004 and 2009 reported cases of Lyme disease rose 94%. They continue to rise today.

Fortunately, people are starting to take notice of this disturbing trend. But, if Lyme disease continues to spread, often unrecognized and untreated, it will not take long before everyone either knows someone who has it, or they have it themselves.

Lyme is now way more common than AIDS, West Nile Virus, and other vector-borne illnesses.

It has now been 4 years since I was bit by tiny ticks infecting me with Lyme bacteria. It changed my life radically.

For several months, just like Avril Levigne, I truly thought I was dying.

Because the doctors and specialists I went to couldn’t figure out what was causing my symptoms, I went untreated for 18 months.

When Lyme bacteria, or Borrelia Burgdorferi, goes this long without proper treatment the damage often causes destruction to every organ and system in the body. This includes the heart, brain, neurological and immune systems.

Lyme is often called “the great imitator” because the symptoms are like so many other conditions. These include Multiple Sclerosis, fibromyalgia, chronic fatigue syndrome, Sjogren’s syndrome, and others.

I asked the doctors if my illness could be due to the tick bites I got at my home after being in the tall grasslands and forest area behind our house. I became extremely sick shortly after discovering the ticks and thought this was something that should be investigated. It wasn’t until much later that I was finally diagnosed.

“You Can’t Get Lyme Disease In Missouri.”

Unfortunately, I was repeatedly told, “You can’t get Lyme disease in Missouri.”signs symptoms and stages of Lyme disease

I obviously was naive to believe that doctors are always (or usually) right. I’ve learned much about the importance of advocating for myself and my health. I continue to learn more every day.

Eventually the proper tests were given that proved that they were tragically wrong and I did in fact have Lyme and other tick-borne illnesses, including tularemia.

That said, I have met many caring, well-trained physicians who are indignant when they hear that I was given the run around for so long without testing or treatment, especially when the doctors knew I was bitten by ticks. They simply told me that I had “tick fever” (whatever that means).

If this happened to me it could happen to you or to your loved ones. And I would never wish this horrible disease on anyone! That’s why it’s so important for me to share with you to help prevent other people from going through what I, and thousands of others, have been through.

Up until that point I was an extremely healthy person. (Please feel free to read more about my life with Lyme.) But now life is very different for me. I’m finding a new normal and constantly working to learn more and become as healthy as I can.

There is always hope!

I’m going to share with you the signs, symptoms, and stages of Lyme disease to help you know what to watch for. I truly hope this will enable you to protect yourself and your loved ones.

signs, symptoms and stages of Lyme diseaseSigns, Symptoms And Stages Of Lyme Disease

1. Early Localized Lyme Disease (1 to 4 weeks)

This stage can develop from days to weeks after becoming infected.

Symptoms may include:

  • Rashes – Less that 50% of Lyme patients remember developing a rash. Sometimes the rash looks like a bulls-eye. This is referred to as erythema migrans (EM). It is a myth that you must  have this rash to have Lyme disease (1). I did not ever see a bull-eye rash, but have developed a number of unusual red rashes since the tick bites.
  • Flu-like symptoms, such as fever and chills, fatigue, headache, pain or stiffness in the neck and swollen lymph nodes (2).
  • Nausea, dizziness and vomiting

Stage 2: Early Disseminated Lyme Disease Infection (1 to 4 months)

This stage develops when the disease is not found and/or treated properly soon after infection. At this point the infection can begin to affect the joints, heart, nervous system and skin.

Symptoms may include:

  • More rashes that start to appear in different parts of the body due to the infection spreading
  • Paralysis of the facial muscles, or Bell’s Palsy
  • Fainting
  • Headaches or migraines
  • Painful, swollen joints, such as the knees
  • Heart palpitations or Lyme carditis
  • Conjunctivitis, or pink eye
  • Meningitis – swelling of the brain

Late Persistent Lyme Disease, Or Chronic Lyme

Failure to treat Lyme promptly can cause damage to the brain, joints and nervous system. This is the most serious stage.

Symptoms include:

  • Extreme exhaustion which is not relieved by sleeping or resting
  • Inability to control facial muscles
  • Heart problems, such as pericarditis
  • Tingling and numbness of the hands and feet
  • Arthritis, often in the larger joints, such as the knees
  • Short-term memory loss
  • Confusionsigns, symptoms and stages of Lyme disease
  • Difficulty thinking or reasoning
  • Difficulty speaking
  • Getting lost, even in familiar areas
  • Anxiety, panic attacks
  • Seizures
  • Tremor
  • Sensitivity to sound, light and smells
  • Headaches and migraines
  • Mood swings, depression
  • Sleep disorders
  • Migrating joint and muscle pain
  • Vertigo
  • Difficulty hearing
  • Vision difficulties
  • Weight gain or loss
  • “Air hunger”
  • Pain in the chest or ribs
  • “Heart block”
  • Neck pain, stiffness and cracking
  • Night sweats
  • Erectile dysfunction
  • Heart murmur or valve prolapse
  • light-headedness, dizziness
  • Menstrual irregularity

The Takeaway

This list of signs, symptoms and stages of Lyme disease is not exhaustive. I’ve talked to a lot of people with Lyme. Many of our symptoms are similar, but others are different.

If you are struggling with an illness and the doctors have been unable to help you, you may want to consider this list to help you rule out (or in) Lyme disease.

Or, if you know you’ve been bit by a tick, mosquito, etc and aren’t feeling well, please get yourself checked out.

Here is a list of doctors who specialize in treating Lyme patients. I would highly recommend starting here.

Do you have any of these symptoms? Or do you have an unexplained illness and can’t seem to get answers about what’s going on? Please share your comments below.


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