Lyme Disease Awareness Month: Common Questions

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As with most chronic illness, Lyme Disease is often misunderstood by outsiders and sometimes even by those who suffer from it. I’ve been asked loads of questions during the past two years since my diagnosis, and many times I find myself stumbling over my words and searching for ways to simplify Lyme in a way that can easily be grasped. It’s no easy task, and I’m still working on my spiel, but the more I speak out the better I get at explaining things (or at least that’s what I’d like to think). Keeping these things in mind, I decided to write a short post answering the most common questions that I get asked about Lyme. If you have a burning question or just generally want to know more, you can always contact me or post in the comments.

1.) What is Lyme Disease?

Lyme Disease is the most prominent infectious disease in the world. Last year 300,000 cases were reported, making this an epidemic of greater proportions than both AIDS and breast cancer combined. Lyme Disease is a stealth bacteria in the shape of a corkscrew that has the capability to inhabit and invade all parts of the human body, including deep tissue, joints, bones, and even vital organs such as the brain, heart, lungs, and liver. To put it simply, Lyme Disease is a deeply debilitating bacterial infection that is easy to catch and difficult to eradicate.

In addition to the Lyme bacteria, what is referred to as Lyme Disease in fact also includes an umbrella of other bacteria, viruses, and parasites (known as co-infections) that are often times passed along with the Lyme infection. These co-infections can be just as debilitating as the Lyme bacteria itself, and they also make treating the illness much more complicated. In effect, a person battling Lyme Disease is not only only fighting one disease or infection, but many. The most common co-infections are bartonella (Cat Scratch Fever) and Babesia, which is a cousin to Malaria.

2.) How do you get Lyme disease?

Lyme Disease is most typically known to be contracted by the bite of an infected Deer Tick . Although these facts are true, Lyme Disease is also carried by at least 8 additional species of ticks, including The Lone Star Tick, which is common in Texas. Research has also shown that other vectors such as fleas, flies, spiders, mosquitos, and mites also carry Lyme Disease and may be just as common vectors for the disease. As if this weren’t enough, there have been many research studies that confirm that Lyme Disease can be sexually transmitted and can even be passed through the placenta during childbirth. Sadly, many mothers unknowingly pass this disease on to their babies.

3.) I thought Lyme disease was easily treatable with a course of antibiotics. Why are you still sick?

If caught in the very early stages, a 28-day course of antibiotics is sufficient in most cases, and although recent evidence shows that antibiotics don’t clear an early infection in up to 36% of patients, the chances of full recovery with little to no residual damage are much greater in the early stages of the disease. If, however, Lyme Disease goes untreated for more than 6 months, it is then considered a chronic infection, which requires a much more virulent effort that can sometimes take years to eradicate.

4.) What are the symptoms of Lyme disease?

Lyme is most commonly known for causing joint pain, fatigue, and flu-like symptoms. But did you know that it can also cause symptoms like, neurological impairments, heart defects, vertigo, seizures or seizure-like activity, muscle spasms, hormone imbalance, and air hunger? There are presently over 50 different symptoms associated with Lyme, and since it can literally effect every body system, it can be quite devastating. I’ve listed out my symptoms here to give you a better idea of what life with Lyme can look like.

5.) What is the treatment for Lyme disease?

The most common treatment for Lyme is the use of either high doses of antibiotics, often times administered intravenously like chemotherapy, or a variety of powerful herbs. Both antibiotics and herbs have been shown to kill high quantities of Lyme pathogens, but since no two people are infected with the same pathogenic makeup, it’s often times difficult and time consuming to find a combination of therapies that works. The result of this type of trial and error approach is that it can often take many months or years to find a treatment plan that works for each individual, which is a drain on time, resources, and energy.

6.) How long does it usually take to get better?

That depends greatly on how sick the individual is, how long they have been infected with Lyme, if there are co-infections or other complicating issues present (such as heavy metal or mold toxicity, or a secondary illness), and how well one can tolerate the common pharmaceuticals and herbs are that are used to eradicate illness. Some individuals may heal from Chronic Lyme in 10-14 months while others are confined to bed for 8, 9, 10 years.

7.) Can Lyme Disease kill you?

I’m not going to lie, I’ve googled this question on more than one (very low) occasion, somehow hoping that this disease either wouldn’t get the best of me or that it would at least take me quickly. The google results were never quite satisfying, but suffice to say that Lyme can certainly be fatal in some cases. If the infection is allowed to spread for long enough it can cause serious implications, such as sudden heart attacks, seizures, and strokes, even in young people. The disease process with Lyme is often slow and cruel, but even though it may not be fatal as quickly as a terminal illness like cancer, it certainly should be taken very seriously as it has the capability to be just as deadly.

8.) Where can I learn more about Lyme Disease?

Visit ILADS.org or LymeDisease.org for more information about chronic Lyme Disease, or feel free to contact me with any questions at all.

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7 thoughts on “Lyme Disease Awareness Month: Common Questions

  1. I’m currently trying to get on disability but my western doctor through my
    County medical insurance only gave me 1 month of disability because my last test he ran was negative and I’m currently waiting on the western blot. If that’s negative he wants me to see a specialist. My Reno doctor can’t fill out the paperwork because he’s in a different state. I have many symptoms that are gone but still am too fatigued and foggy to work. It’s so frustrating. Thanks for educating others – love your blog! Xo

    • Disability issues are one of the most frustrating parts, I agree! I’ve been battling to get my disability benefits for 2 years now, and I hope you’re able to get yours sorted out much, much more quickly. Did you have to quit the job that you loved? Am so sorry if that is the case. Sending lots of love.

      • The job was initially great but proved to be far too stressful and caused a relapse. I know my limits now. I had positive bands on the IGENEX but that’s not good enough for this doctor to give me disability. Praying for healing for us both girl! Lots of love to you as well.

      • Aaah, I see. I am SO sorry to hear about your relapse, but you know your body well, and it’s wonderful that you know your boundaries. That is something that I always struggled with before I got super sick (and even sometimes now to be honest). Wishing you a very quick recovery- you did it once and you’ll do it again!

  2. Hi Kayla! I too, am a born & raised Texan-turned NYC transplant-Lyme Disease sufferer that had to return back to Texas. Your recent posts for Lyme awareness have been so helpful in helping explain certain facts about Lyme to family & friends– thanks for posing!

    blessings,

    elise

    • Hi Elise! Oh my goodness, I am so sorry to hear that you have also been struggling with Lyme too. I’m so glad that you found some of my posts helpful though, hearing that always brings about a sense of purpose that I am grateful for. I’d love to connect more with you, and am also curious about the doctor you’re being treated by, if you’re up to sharing! Can I email you?

      So happy to connect with another brave beauty. Xx.

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