When I was first diagnosed with Lyme Disease, I had no idea what it was, or what to expect. Sure, I had heard of it, but I had never met anyone who had it. Living in the Northeast, I was familiar with ticks, and had removed many from friends, family, and pets, but “Lyme Disease” was never discussed, or fretted about.
Soon after my diagnosis, I set out to learn more about Lyme, and in the process learned that not only was I not alone, I was in the company of millions of men, women, and children, all over the world who were suffering from this devastating disease.
Unfortunately, I soon discovered, that unless a person had been diagnosed with Lyme, or had a close friend, or family member who had been diagnosed, there was an unacceptable lack of awareness of, and belief in, the seriousness of this disease, it’s ability to become chronic, and how, over the long term, it could become debilitating, and deadly.
What really get’s me, is that even in an endemic area, the mere mention of Lyme Disease is likely to cause a physician to immediately reference the criteria of the CDC, and IDSA’s testing protocols, all the while, rolling his eyes, huffing, and puffing, and pigeon-holing patients into the “It’s all in your head, and you are probably a drug seeker, we’ll just call it Fibromyalgia. Here’s some Prozac.” category. (Mind you I am not saying fibro isn’t real. This is just an example.)
Being a curious person, and one who wants to know the TRUTH about things, I began researching Lyme Disease. I sought out all kinds of information. Everything from personal accounts, to accredited research. I investigated conspiracy theories, and compared symptoms. I spoke to others with Lyme Disease, and was made aware of the years of suffering, and misdiagnoses they had struggled with. I learned how often people succumb to this disease, more often than not, by committing suicide.
I was, and still am, appalled by the lack of knowledge, and concern most people, including medical professionals have for this infectious disease. It is not one that will kill instantly, or within days, so I guess it isn’t very scary. It’s not the plague, or hemorrhagic fever, but in terms of lives lost, jobs lost, loved ones lost, and money spent to stay alive, it can create a huge financial burden for any person, family, or healthcare system.
In my 4 years of being affected, (Which is far less than the 20-30 years many have fought through.), I have seen blind eyes turned, and facts dismissed, even amid an ever strengthening advocacy movement, and an increase in celebrity testimonials to it’s devastating, and lingering effects. I can’t help but wonder why we are still fighting so hard to be heard, and cured.
I used to spend quite a bit of time explaining Lyme Disease, the inaccurate testing used to diagnose it, it’s symptoms, and why it was so hard to treat, to people who would ask, or who would say, “Oh yeah, I had that.” (Then telling me that they were cured.) “I still feel tired, and my joints hurt though.” Or, the classic, “I don’t know why I am sick all of the time.” SMH. It is because you were not properly diagnosed, and treated.
People often adopt the “blank stare” of indifference when a bunch of technical information is directed at them. I have tried to explain why the tests are inaccurate, why antibiotics don’t always work, and why their doctor may not know anything about Lyme, to no avail. There are people that no longer ask, or talk about Lyme with me, even though I still see them repeatedly struggling with illness, pain, and fatigue. I can, and do understand. It is just about impossible to be correctly diagnosed with Lyme. It is also nearly impossible to be properly treated for it, unless you have a Lyme Literate Doctor. To top that all off, if you do happen to find an LLMD, you will more than likely, have to pay out of pocket for their services. (…and I’ll tell ya, that aint cheap!)
“Lyme Disease for Dummies”
-Lyme is a bacteria. It is a little germ that is shaped like a corkscrew. It gets into your body through the bite of a tick. This corkscrew can burrow into tissue in your body. This causes a reaction by your body to fight off the little buggers. You may have a rash, a fever, flu-like symptoms, fatigue, aches, pains, and generally feel like shit. You may not even know you were bitten by the tick, and your symptoms may just subside. (Don’t be fooled.) This spontaneous remission is caused by those little corkscrews banding together in little balls called cysts. They build the cyst as a fortress to protect themselves from your body’s defenses, and attacks by antibiotics. These cysts also act like cloaking devices, and prevent detection of the bacteria unless your body is producing the antibodies that are specific to your particular strain….(Yeah I know big words, but there are hundreds of strains.) They are crafty little fuckers, and as with all living things, have developed ingenious ways to survive, and thrive. Bottom line is, that there are unwelcome visitors inside you, and you’re going to have a hell of a time evicting them.
In order to even have a chance of being cured, going into remission, or reaching the less likely, “pretty much symptom free” state, you are going to need to find the elusive, and shy, Lyme Literate Doctor, a.k.a. an LLMD. These physicians, although being driven almost into extinction by the evil insurance companies, can still be found through word of mouth, but they may require referrals, and cash up front.
Whether you have a clear diagnosis of Lyme, or not, you will undoubtedly face an uphill battle in your fight to regain your health. You will be bombarded with suggestions of potential cures, ignored by the medical community, and possibly ostracized by friends, and family. You will hear, “At least it isn’t Cancer.”, “You don’t look sick.” and a plethora of other solecistic remarks that will annoy you to your core.
Do not give up. – ❤
The upside of this whole thing, is that you will learn more about yourself, and this disease, than you ever wanted to know. You will meet new people with the same, or combined, similar illnesses that you can relate to, and who will probably share sage, chronic illness (Spoonie) wisdom with you. You will absorb, if you are the type, enough medical information, statistics, and research data to qualify for a Ph.D.. You will discover new hobbies, and passions. You may even become an activist, and change the world.
Disabled doesn’t mean un-able.
Although this is an illness that can show you the darkest parts of yourself, and others, it is also an illness that can, and will, show you the best, and brightest parts. If at some point, you are diagnosed with a more familiar illness such as Fibromyalgia, or ME/CFS, do not take it as a sign that you no longer have Lyme. There are so many variables, and similar symptoms, we may find some day that these illnesses are all related. We just don’t know.
So, if you have Lyme Disease, (or any other chronic illness, for that matter…) hang in there. Remember that you will get through this, and that you are not alone. Stand up for yourself, and others, by learning about your condition(s), and promoting awareness.
Most importantly: Don’t ever let anyone tell you that there is no such thing as Chronic Lyme Disease.