STOP! THIEF!

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Lyme disease is a thief and a murderer. Did you know that?

It robs a person by first stealing his body and his mind. Lyme takes away words and feelings and a body in motion. The bacteria get into the brain and can make a person feel he is losing his mind. And, there are many health professionals out there who are happy to agree. My husband’s first meds were psych meds. Lyme tears out throats, in that patients (and caregivers) get tired of talking about pain and withdraw. It seems almost lucky, then, that it also rips out hearts so sufferers can stop caring about relationships or the future or themselves. But, a broken heart does not a healthier person make, adding suicide as a big risk for Lyme sufferers.

Lyme does not care if you are an adult or child. It feels no sympathy. It creates a perfect storm, literally eating through soft tissue like the brain and the cartilage in all the joints, hijacking the immune system until it’s had enough and joins ranks in the war against the very host it was meant to protect, who then presents with the clinical symptoms that are diagnosed as MS, ALS, Parkinson’s, Autism, Depression, Fibromyalgia, Alzheimer’s… the list continues.

I know all this because I’ve seen it. I know because my husband and I lost another friend today.

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Ray (left) was kind and funny and a good husband to his lovely wife, Nancy. He was cheeky and strong, with a small syringe-shaped tattoo that read “Nutech“. We met him and his wife there, in India. He suffered from ALS and Lyme. I remember meeting him in the stairwell, by the elevator, as he came up from his afternoon physical therapy. All of us ate several meals together and gathered to hang out and talk on the patio or just watch the rainstorms from the lobby. My heart is breaking for his family today, especially his wife. It reminds me how grateful I am that my best friend is still with me.

More than once in the last (almost) 8 years, my sweet husband wished to die, especially in the first five years. Had his course with Lyme gone even a little bit different, he might have had that wish granted. But, crazy as it sounds, that STILL is not the scariest thing about Lyme.

The scariest thing about Lyme is the number of people getting it every year who have no idea. The CDC recently admitted that the roughly 36,000 people who are diagnosed with Lyme is only about 10% of the population who are contracting the infection each year. This means that (on the low side) about 300,000 people are newly-infected each year around the US.

  • If only 10% of 300,000 people contracting the disease are being diagnosed each year. That means somewhere in the neighborhood of 270,000 added men, women, and children are walking around each year without any idea why they don’t feel quite right.
  • Each time we vote for a new president, ONE MILLION new people are sick who don’t know the real reason why and are therefore not receiving the right treatment. To give you a little context, San Francisco has less than a million residents, Los Angeles, the second largest city in the US (by population) has less than 4 million residents. And the entire US had a population last year of about 320 million.
  • So, correct me if I’m wrong, but that means (not adjusting for region or the people who are already diagnosed) the average American citizen has a 1/1000 chance this year of being infected.
  • There is new evidence that Lyme may be sexually transmitted, can be passed along in utero, and certain strains have been transmitted through blood transfusions. Oh, and scientists are looking at the possibility of transmission from mosquitoes and fleas, too, so it’s really not just ticks that we’re talking about, anymore.
  • And, then, if you do get sick, you have ONE chance out of ten to find out what’s wrong with you so you can even begin to treat it, meaning you may actually have to see more than ten different doctors before you’re able to get any real help.

I don’t know about you, but, quite frankly, I think those odds suck. And that is a lot of work for someone who feels like they are suddenly falling apart, going crazy, or dying for no reason.

My intent, however, is not to terrify you. My intent is to arm you with the tools you might need in the fight for your life. Lyme is not only contracted while hiking and camping. It can be found at the park or on the school playground. Every day you take a walk, every day your child plays in the grass or your dog goes outside, your family is exposed. Your risks decrease as you move into more urban areas, but ticks cling to birds and trees and grass and clothes and fur until they get where they’re going. And, your blood supply is exactly where they would like to be going. Like pollution, terrible drivers, and the sun’s damaging rays, ticks are just one more thing to be aware of when we walk out our doors. We have to face the world prepared if we want to pass through (relatively) unscathed. Even then, it’s probably a crapshoot, right? So, arm yourself with the one thing that could save the life of you or your loved ones: information. It’s the reason I’m still here, working on this blog post, instead of writing about… hmmm… I don’t know… anything else?

People are dying. Our friend just did, and now an entire community is left to grieve. This is not to say his life was not beautiful and that his path was not meant to be as it was. Ray had a spirit that shone straight out of his eyes and lit up his smile. He laughed and sang and loved, and I don’t believe he’d want people to feel sorry for him. But, your experience does not have to be his. Your husband’s, your girlfriend’s, your mother’s, your child’s experience does not have to be like Ray’s. In fact, Ray dedicated his journey with Lyme and ALS to “HOPE”; for a cure, for a better life. Not just for himself, but for all of us.

Awareness, early detection, and immediate treatment can help. The right tests and a doctor who knows what he’s looking at can make all the difference in the world. And, your willingness to keep an eye out and advocate for your and your family’s health might just help to stop a killer.

(Photos by Melissa Compton)

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4 Comments

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4 responses to “STOP! THIEF!

  1. Marc Compton

    I’m so sorry to hear about Ray. That is so very sad.
    This is a very moving post Mel, I hope many people
    Read it and heed your advice.
    Peace to all,
    Marc

    • Mel

      Thank you, Marc. It is hard to lose the ones we love. We are humbled by their bravery, as they adventure before us, and we continue to feel the emptiness of their space, even if we didn’t necessarily share it, physically. Ray will be missed, as our other friends before him. We need to get the word out. If this post helps but one person, it will be more than worth it.
      Love to you and Becki. ❤

  2. Chrissy Taylor

    Mel,
    This gave me a lump in my throat and a tear to my eye. Insightful and much appreciated.
    I know you and Greg are hurting for the loss of your friend and I send you my condolences .
    I love the way that you write and I hope you continue with your blog. I was just talking to my doctor today about you and Greg and your journey with this sneaky dreadful disease. I would love to give him your insight and writings of Lyme and Greg and your journey . I will not do that without your permission
    Hugs and misses to you two love birds. Love Chrissy
    p.s. in this there was a mention of Autsim . I would like to do a little more research on that .My 12 year old grandson was diagnosed under the Autism umbrella , I’m not sure . If you have any Idea where I could go first to look into this I would really appreciate it , Thanks , Chrissy

    • Mel

      Thank you for your kinds words and thoughts, Chrissy. Feel free to share this site with anyone you’d like. I am definitely not an expert, and I want to be very clear and make the statement that Lyme and Autism do not always go hand-in-hand. As you mentioned, Autism is an umbrella (or a spectrum, if you will) under which there is a huge range of brain-related disruptions. There are, therefore, imo, many different causes of Autism, and it is nearly impossible to pinpoint any one of them. Lyme, however, is absolutely capable of damaging the brain to create symptoms that, if they don’t create it, perhaps at least mimic Autism. Time and again, I have met families in which adults with Lyme gave birth to autistic children who later also tested positive for Lyme. No. 1 had horrible sensitivities to touch, light, sounds, and smells. Looking someone in the eye or even a big, blue sky were overwhelming and terrifying for him. He literally stopped being able to connect at work or socially much for years. There were other times he would try to do simple work, remember a name, or formulate a basic sentence, and it just would. not. come. In talking to him at great length, I believe that what he was experiencing was perhaps similar to what children with Autism struggle with, but he had context, language, and a healthier past to compare how he was feeling. Autistic children, not having any of those things, have few tools for giving their experience words. This make is so frustratingly hard to help them.

      I have said before that I am no expert on any of this, especially when you start throwing Lyme against other diagnoses. But, if I were going to start looking more into the possible connections between Lyme and Autism, this is where I would likely start:

      http://www.lymeinducedautism.com/
      http://our-lyme-autism-journey.blogspot.com/2012_01_01_archive.html
      http://jama.jamanetwork.com/article.aspx?articleid=1733709
      http://www.amazon.com/The-Lyme-Autism-Connection-Unveiling-Developmental/dp/0976379759

      Hope any of this is helpful to you. Love and Light to you and your little one, Chrissy. ❤

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