Pain. Unfathomable pain. Constant pain. And it’s going to stay for the rest of your life.
That is what most people realize when it becomes clear they have Lyme Disease. Of course, I know nothing about this pain I hear of. But I personally know people who have Lyme and I have had the privilege of being explained how it feels to live with Lyme from someone who has it. And it can be summed up pretty well in one word: Pain. The kind that leaves you bedridden and depressed. It can even lead you to question whether life is worth it anymore.
The ones who can understand the pain of Lyme Disease the best are the ones who actually fight it.
And that’s scary, because that means if you do have Lyme, you’re the only one who really understands your sickness and none of your mainstream doctors really can. Plus, doctors specifically for Lyme are rare; we don’t know much about the disease. You’re going to have to be your own doctor.
It doesn’t stop there, though. Everyone who has Lyme disease gets affected differently from everyone else. Symptoms vary, levels of pain vary; heck, there’s more than 300 different types of Lyme symptoms. This is why, when most people start getting affected with Lyme, they feel like they’re the only ones on Earth who feel this way.
Lymies, am I right?
This month is Lyme Awareness Month. Not only that, but Lyme Disease is a relatively newfound illness and it’s time to start educating everyone about it, because 1)it’s hard to tell whether you have Lyme Disease or not, and 2) It’s starting to become an epidemic. And yet relatively few people have heard about it or even know what it is. It took my friend and her parents five years with her pain to finally figure out they had Lyme; some people take even longer. What better time than to write a post series on just what Lyme is and how it affects us?
Before I start explaining anything, you must know that because Lyme Disease is a new and recently discovered illness and we have just started researching it; therefore, we know very little about it, even the doctors and so-called specialists. This puts Lymies in a seemingly hopeless spot. What I’m about to tell you in this post series are from the following sources: 1) official online sites, 2) a Lyme Disease documentary Under Our Skin, and 3) actual people who have talked to me about their Lyme, directly and indirectly. Besides the information from these sources, considering I can’t begin to fully understand the actual pain of this disease, I am certainly no expert. But I know enough to write about it, even if I merely scratching the surface.
Lyme is a very controversial topic and there are many different doctors and ways of treatment that may or may not work. America’s just getting started on this; who knows, maybe next month we’ll know 50% more about Lyme Disease than we do now and what I’ll say in this post could either be true or false. So, with that in mind, let’s begin.
What is Lyme Disease?
Lyme Disease is a chronic illness. In other words, when you get it, you will get worse and worse, and without the right amount of the right treatment (which is very hard to figure out) Lyme will eat away at your body until it, well, kills you. Right now, there seems to be no way to completely heal one of Lyme Disease so that it is gone forever. But there are things people are doing that make them feel better, for example, finally finding a treatment that works right for them. Even little things that alleviate the symptoms just a tad so that they can keep facing every day that comes at them. 63% of people who get treated for Lyme continue to suffer crippling symptoms. And there are no tests that can prove that the patient has been cured of Lyme Disease.
Where does Lyme Come From?
Lyme is a bacterial infection and the most commonly known way of getting it is getting bitten by a tick: Immature deer ticks, called nymphs. These ticks carry certain bacteria in their blood, called Borrelia burgdorferi. When they bite a human, they suck the blood, but that person’s blood intermixes with the tick’s blood, and the bacteria from inside the tick flows back into the human’s blood. When these certain ticks bite, the victim doesn’t feel the pain and the tick is so small, it can hardly be noticed. Way too small. Turns out, ticks attach to you. Ewww. It can feed on your blood for several days. The longer it stays attached, the more likely it will transmit Lyme into its victim’s body. Lovely. (Maybe the deer ticks are Dracula’s servants; maybe Dracula is finally getting back at us. Maybe I don’t like Dracula so much. Maybe I should stop coming up with story ideas.)
The CDC says “There is no credible evidence that Lyme disease can be transmitted through air, food, water, or from the bites of mosquitoes, flies, fleas, or lice.” Erm. That site is government run. And people are saying they’ve graciously received Lyme from these hospitable and generous mosquitoes and fleas.
The problem with the tick conclusion, is that only 50% of the people who have Lyme disease ever remember getting bitten by a tick. So there are probably other possible ways of getting the disease from a tick bite, but there’s not enough evidence yet to confirm there are.
Lyme Disease can also be transmitted by birth, which is why sometimes even the whole family can get it. Doctors say there may be other human-to-human transmission, but there’s no evidence for that yet. Lyme Disease could also enter through the blood — not unlike tick-to-human. At least it is not contagious, or everyone in America would have it by now.
Lyme has also been found on every U.S. state except for Hawaii and on every continent except for Antarctica. And, as you may have already figured out, in certain forests. Aye, there be ticks. Lyme originally exploded in the northeast, in Connecticut. And then it moved on to the rest of the East coast, across the country, down the West.
How Does Lyme Affect the Body?
When Lyme enters the person’s body, its bacterium can saw into every organ and muscle: including the nervous system and heart. What’s so frustrating about this, is that the symptoms of Lyme Disease may seem like symptoms of other illnesses. Tons of people who really have Lyme have spent tons of money and time going to the doctor, not knowing their new symptoms, and the supposedly all-knowing doctor will diagnose them with something … most of the time, it is not Lyme Disease. Since everyone’s symptoms of Lyme Disease tend to vary tremendously, two people in the same family could have Lyme Disease, but one may seem to have a constant cold and intestinal issues, while the other person has pain in the muscles and joints and physical exertions bring constant pain. Again, the pain levels also vary.
Common symptoms include extreme fatigue, brain fog, cognitive and neurological impairment, joint and muscle pain, flu-like symptoms, “bulls-eye” rash, insomnia, mood problems (you bet), and muscle pain, even heart palpitations. Some get diagnosed with chronic fatigue syndrome, irritable bowel syndrome, ADHD, rheumatoid arthritis, thyroid disease, cellulitis, Parkinson’s disease, ALS, depression, multiple sclerosis, and so many other types of illnesses. Some have even been told to see a psychiatrist. If you happen to be experiencing certain symptoms, common to well-known illnesses, but you have done everything to help yourself heal or alleviate pain and it’s never helped? Ten to one you have Lyme Disease. There’s the reasons why Lyme is called “The Great Imitator.”
Here is a link for a test you can take, answering questions about your symptoms, and it will tell you whether or not you may have Lyme.
At least 500,000 people a year in the U. S. are diagnosed with Lyme Disease. 25% of these are children, in the age range 5-19, most of them boys. Doctors have seriously misdiagnosed young children with illnesses such as arthritis, which is stupid; children never get arthritis, unless our understanding of arthritis all these years has been false. Children have the highest risk of contracting Lyme and have also been misdiagnosed with ADHD, ODD, OCD, and Tourettes.
The Heath family, (including blogger Hannah Heath, who you may know of) friends of ours, have been struggling with Lyme disease for several years. You can view their fundraiser here; we are raising money for their financial needs as they need to pay for their treatment and medical needs. Raychel Rose, another blogger you may also know, has recently found out she has a bad case of Lyme disease after several years of symptoms. Please pray for these fighters of Lyme for quick healing, continued peace, and support; it often seems horrible like something like Lyme affects people who seem to deserve it the least. Please also consider donating a dollar or two for the Heaths’ fundraiser. We are so thankful and blessed for the amount that we have already and small amounts do add up.
Do you have Lyme? How accurate was this information? Have you never heard of Lyme Disease? Now you have. Please share on your social media and let’s spread the word and the awareness of Lyme Disease! Stay tuned for next week’s post on what it’s like to live with Lyme mentally, emotionally, physically, and socially.