Caravan Sonnet: What is Lyme Disease?

5/4/17

What is Lyme Disease?

Whenever I meet someone who does not know my journey of fighting to regain my health I find that a common conversation takes place. It doesn't matter if this person is a random stranger, a new doctor, a new hospital emergency room nurse, a lady standing in line at the county clerks office as I applied for the disability tag four years ago, my former boss, a former co-worker, a cousin that I haven't seen in a long time, the cute guy flirting with me on the plane as I traveled to California to my medical team, or the adorable firefighter that came to save our neighborhood three years ago. I receive a sympathetic nod or a sweet comment of encouragement when they hear that I dealt with skin Cancer several years ago, but when I mention Lyme Disease they look at me bewildered or with a confused look. 

They hesitate... and then the questions start.

"Is that what happens when you get bit by a tick?" they ask. 
"Yes" I answer. 
"When did that happen?" they ask. 
"2007. May 19, 2007 to be exact." I reply. 
"Not to be rude or anything but you know that you can just go to the doctors and get antibiotics for that." They state. 
"Yes, I am aware of that." I reply. 
"Did you get the bulls eye rash? You just need to go get medicine and get better" they state (most of them very kindly, a few a little sarcastically, and one who accused me of "simply making it up to get attention"). 
"No seriously, if you had the rash you should go get medicine. My ___________(insert some long lost family member's sisters friends cousin's name here) had Lyme and they got better in a few days...maybe a week at most. Why are you waiting?" They state more insistently. I hesitate and then with a quiet sigh my reply comes.

"I was bit by a tick on May 19th, 2007 hiking in Great Falls, Virginia. I remember the date exactly because my ex-finance and I talked about marriage that day. The next day as I was training for a 1/2 marathon I noticed the bulls eye rash on my upper right arm. I received medication (yes, I finished the full dosage) and was seen at John Hopkins University Hospital Lyme Center. After completing the medication I was declared "Lyme free". Except I wasn't..." I calmly reply. 

Absolutely silent they look at me. And some say what I am sure everyone is thinking... "So what the heck is Lyme Disease and how in the world is this making you so ill?"

To be frank it is a question that I have asked myself thousands of times as I approach the 10 year anniversary of contracting Lyme. While my health slowly declined over the course of 5 years until I became bedridden and housebound before obtaining proper treatment, the reality is that the past decade has been spent dealing with Lyme and its ramifications on my body. After 1/2 of a decade of intensely fighting this disease you would think that I would be an expert in sharing a quick and succinct version of what Lyme disease is, but the truth is that the answer is just as complicated as the disease itself. 

And it is a growing and widespread epidemic...

At a recent Lyme Disease conference it was stated that "Lyme Disease is the growing epidemic and health crisis of the 21st century" and that "in the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine."

Lyme Disease is contracted by a tick bite that has been infected and then infects the person that it has bitten. While a bulls eye rash is common in most cases, in recent years there are more and more cases that occur with the person never seeing a bulls eye rash. In addition to this in recent years studies have shown that in addition to a tick transferring Lyme you can also contract Lyme through being bit by a mosquito, flies, or fleas. 
property of Lyme Disease pictures
Lyme Disease is considered (by most doctors- some would disagree) an infections Disease with the bacteria in Lyme called "Borelia Burgdorferi". The Lyme bacteria is unique in its shape (it has a spiral shape) and unlike most diseases it is able to burrow into not only into the blood stream but into vital organs, muscles throughout the body, the nervous system, and body tissue. (In addition to this studies coming out of Europe show belief that Lyme has the potential to drill into bones.) Due to the unique shape and properties of the Boreilia Burgdorferi Lyme has the ability to literally infect the entire body and travel throughout the blood stream (doing incredible damage to the organs and the cells that it connects with in its way). Over time Lyme also has the ability and capability of surrounding cells, killing them, and creating a "wall" that prevents antibiotics to "break" the barriers. In addition to this the bacteria commonly makes cysts that are also difficult for antibiotics to touch.
property of Lyme Disease pictures
Due to these reasons a person with Lyme (whether mis-diagnosed, mis-treated, or not caught at the time of infection) can suffer for decades before being diagnosed and can suffer a confusing and wide array of symptoms that might or might not look like other "lymies" fighting the same battle. 

Lyme is considered the "Great Imitator" and is known to imitate over four hundred different diseases including CFS/ME (Chronic Fatigue Syndrome), Fibromyalgia, IBS, Lupus, MS, Autoimmune Disorders, Alzheimer's, ALS, Migraines, Depression, Meningitis, Lou Gehrig's Disease, and hundreds of others. 

Patients in "late stage or chronic stage" Lyme Disease are fighting a complicated and complex battle as many (including myself) are fighting not just the Lyme but co-infections, additional diagnosis', and issues that have occurred due to the fact that Lyme has waged war on their bodies. Due to the fact that the bacteria from Lyme Disease can not only travel but multiply patients are dealing with multiple issues and symptoms. The bacteria with Lyme Disease does not like the fight and will literally "fight back" which causes a "herxheimer reaction" that can be worse than the disease itself. Due to this the "horror stories" (as the news has sometimes labeled it) are true, as some patients have died and many patients end up in the hospital and are fighting for their lives. 

The symptoms of Lyme Disease vary but most people struggle from many of the following symptoms: debilitating fatigue, heart issues, heart palpitations, arthritis, facial numbness, blood pressure problems, extreme pain, autoimmune disorders, malnutrition, hair loss, vision problems, skin issues, rashes, panic attacks, adrenal failure (or fatigue), memory issues, food allergies, unexplained allergic reactions, insomnia, inability to absorb vitamins and nutrition, hormonal issues, circulation issues, dizziness, seizures, body numbness, blindness, migraines, paralysis in extremities, heart attacks, inability to handle temperature change, lung function, shortness of breath, menstrual issues, and the list goes on and on and on. I have just listed a few but here are hundreds more.


In addition to the physical aspects of fighting Lyme Disease patients are in for the FIGHT of their life not only physically but mentally, financially, and emotionally too. Most Lyme Disease patients have seen dozens of doctors (I personally saw 273-including some of the top hospitals throughout the US-before I was correctly diagnosed) and after the diagnosis can introduce the most difficult battle that is never expected.

 Lyme Disease patients are warriors as they have had to push through hundreds of "all knowledgeable doctors" stating that it is "in their heads" or "they just need some meds". (I had a specialist in 2013 -after we had spent 4 hours in a snowstorm to get to his office-tell my mother (in front of me) that she was "enabling" me to continue to set a "destructive pattern" of desiring attention and that "absolutely" nothing was wrong with me. Within two months of seeing this doctor I not only had been correctly diagnosed with Lyme Disease, but aggressive skin cancer, and several other illnesses.) 

Finding a doctor who is willing to treat a Lyme Disease patient long term is also another battle. Due to arguments with insurance companies, Congress, and medical limitations it is extremely difficult to find a qualified and competent doctor. This takes hours and hours and hours of research and it still doesn't guarantee you an appointment. Mentally this is absolutely exhausting for patients. And after the appointment that you have hopefully gotten there is still the treatment to fight through. 

And both of these things cost an extreme amount of money. 

Money that most patients (like myself) did "OK" with for the first five or six years of wandering the long trail of finding correct answers. But after that time period (and for some it is a much shorter time frame) money is not something that just continues to "come in". It has been spent (wisely, I would like to clarify) on finding answers, traveling to doctors across the country, treating one or two  mis-diagnosis', and on numerous treatments (most alternative so insurance does not cover it). ALL of these things add up to thousands and thousands of dollars. 

Like myself, most Lyme Disease patients are not able to work full time and those that have to struggle to survive day to day. Without a set source of income bank accounts, savings accounts, retirement funds, etc. are quickly depleted. I have been asked by hundreds of people- "didn't you save for a rainy day"? Or... "What about your savings account?". I am going to be incredibly honest here and share something very personal. I had a wonderful savings account (I was a Dave Ramsey's graduate *smiles*) that by year three of this "adventure" was being drained and then at years five and six was completely depleted. (Just to give you a slice of a picture I have spent in the last ten years approximately $150,000 on medical issues, supplies, supplements, travel to doctors, etc. desperately trying to get well!!) I, like most other Lyme Disease patients, have lost any "saved money", savings accounts, retirement accounts, etc in the desperate fight to get better. Many patients like myself have limited funds and to answer the questions that I am sometimes asked- no I do not know where the resources that I am going to need for today and the rest of this week let alone the months and years ahead (until I am able to work full time again) will come from. I am a christian who is madly in love with her savior and have learned to trust that He will always provide for me - each step of this journey. 

Lyme Disease patients worry about things that most people don't think about. I will debate for hours and hours each week on which supplement or antibiotic I should do "without" due to money. We have concerns and stresses that are impossible to explain. We have sold everything we can think of, have had to humble ourselves to ask for money and are embarrassed to admit we have done so, and have asked every family member, friend, and stranger for help. In the process most of our relatives and friends have depleted their savings accounts and bank accounts to help us. Let me say what most Lyme Disease patients are thinking about all of the time but are ashamed to admit:

We don't care about the battles of politics and insurance. We don't care about "which treatment" is supposedly the best. We don't care about "this or that". What we do care about is fighting for our lives and our health and most of us are so scared that we can never get better because we do not have financial ability to do so. 

And I think it takes absolutely no explanation about why Lyme Disease patients also struggle emotionally. The rigor of this fight takes a courage that I never knew before. It takes bravery to face what is realistically going on in your body and the courage to fight for hope despite the odds. It takes courage to look around and realize that your life has been crushed, accept the loneliness of "friends" walking away, and to come to terms with giving up a job that you loved and to recognize that you might never be able to return to it, to find joy despite the pain, to hold on to Hope when it seems so dark, and to believe (against what you have been told) that you can fight this silent and vicious killer. While there are days of tears and darkness Lyme Disease can not silence love and that is what each and every person fighting Lyme is holding onto. 

May is Lyme Disease Awareness Month. Will you please spread the word about this disease and give a BIG hug to those you know who are fighting it? Your kindness in recognizing and spreading the word will touch the hearts of ALL who fight each day. 

I, like every "lymie" I know, longs to see a world where "Lyme Disease" are words that are understood by the medical community along with friends and family understanding it. We long to see knowledge that is spread so that someday we will have a cure so that no one else has to live this fight. Thank you so much for spreading the word during this month. 

Want additional resources on Lyme Disease? Check out "the Lyme Diaries" series on this blog! Are you a Lyme patient or do you have a loved one walking through this journey? Check out my new book, When Truth Refreshes, or my other Lyme books, Path of HopePraying through Lyme Disease, or When Light Dawns which provide encouragement for this journey! Do you have questions, or just want to talk? Please feel free to email me - I would love to connect with you!

10 comments:

  1. Extremely well written dear girl. <3 You always have my prayers. <3 ~Monica

    ReplyDelete
    Replies
    1. You are always in mine sweet friend!! SENDING you BIG BIG hugs today!!

      Delete
  2. Thank you for writing this. It really clarified any questions I had. Thoughts and prayers your way! xoxo

    ReplyDelete
    Replies
    1. Oh thank you soo much!! This post was truly written over several MONTHS so I am so glad to hear that it helped to answer some questions!! Thank you so much for your continued prayers!!
      :) Rebecca

      Delete
  3. Thank you for sharing more about something so many of us know nothing about. You are an inspiration and a fighter! I don't know why you are having to go through such a difficult journey, but Romans 8:28 holds true. We know that in all things, God works for the good of those who love Him and have been called according to His purpose. Prayers going your way.

    XOXO
    Chelsea
    http://www.anchorsaweighblog.com/

    ReplyDelete
    Replies
    1. Aww thank you sweet friend for your kind words! This post has been MONTHS in the making and so I appreciate your sweet words and kind support!! :)

      Delete
  4. You are amazing. I learned a lot from this post, so I'm SO glad you shared!! Thanks for bringing awareness and teaching us more about it!

    ReplyDelete
    Replies
    1. Aww thank you sweet friend for your kind words! This post has been MONTHS in the making and so I appreciate your sweet words and kind support!! :)
      :) Rebecca

      Delete
  5. Thank you for sharing this - I have plans of getting tested for Lyme Disease but hadn't been able to find good info on it so this helped so much. it is scary to see how many of the symptoms i have been experiencing! yipes. Praying for you!

    ReplyDelete
    Replies
    1. Hi Laura,

      Thank you so much for your comment! I so wish that I could email you directly but unfortunately you are a "no reply blogger" but I would love to connect with you more about this. If you see this please feel free to email me at : Caravansonnet@gmail.com if you have any questions or if I can be any help to you! Thank you so much for all of your prayers! I am so grateful!!
      Many Blessings,
      Rebecca :)

      Delete