Showing posts tagged lyme

Three die suddenly from rare Lyme disease complication - NBC News.com

tbdalliance:

See on Scoop.it - Lyme Disease

One was found dead in a car that veered off the road. Two others collapsed and died suddenly without warning. All three may have been…

See on nbcnews.com

For everyone out there who thinks having Lyme is like having a bad cold— this article shows that Lyme can be deadly. I had a neighbor who had this, but survived— we live less than five minutes from the hospital thankfully— and his wife found him unresponsive in the shower. He’d only been a bit worn out. He could easily have died.

I’d hazard to guess that there are many more victims from Lyme carditis than have been actually recognized. It’s terrifying too that these victims were going to be used for tissue transplant— the victims could have been more than just one if a compromised person received Lyme-ridden tissue (Lyme is a spirochete, and travels through tissue more easily than the blood stream, so this would be a surefire way for someone to become infected). As my doctor says— you don’t get Lyme from sitting in a couch all day, so the victims are typically young and/or very fit and otherwise “healthy.” The chances of them being viable donors is therefore high.

Lyme is an ever-growing risk throughout North America, and our antiquated view of its supposed mildness and ease to cure is going to blow up in our faces. How many people have to suffer— and how many have to die— before we lay aside our ridiculous for-profit politics and realize that there are victims here?

Why YOU should care about Lyme Disease: a response to Michael Specter

Okay, I have no delusions of grandeur. I know I don’t have tons of followers, and I also know that not many people care deeply about Lyme Disease outside the community. I mean, when you have either never heard of Lyme or think of it as nothing worse than a bad cold, we sound like a bunch of hypochondriacs and crazy conspiracy theorists.

But this New Yorker article about Lyme and in the ensuing NPR interview, while palatable and just enough shocking to engage the average person’s knowledge of Lyme, is dangerously misleading. He also went so far as to suggest that we, the Lyme community, are not scientifically educated. I’d think it’s safe to say that we are more educated than he.

But threats to your own health beside (educate yourself on that here), why should you care about our struggle? Why should you, average healthy human, pay attention to those who are dismissed as whiny, hypochondriac, conspiracy-mongering “loonies*?”

The conflict surrounding the treatment of chronic and late-stage Lyme is a powerful lesson on the broken nature of our healthcare system. Between doctors who use guidelines and treatments that have barely changed in about thirty years to the insurance that refuses to pay for “experimental” medication, a lot of Lyme patients are left on the periphery of medical care. Some highlights from the battlefield: institutionalized sexism, the mental illness taboo, quackery, ablism, inadequate access to information and treatment, and the relentless persecution of trained doctors who try to help those that the regular medical community has turned away.

This does not happen only to Lyme patients— we aren’t special snowflakes who are the only ones marginalized by the established medical system. Not by a long shot. Not to diminish the terrible things I personally have undergone as well as my peers, but there are other marginalized groups out there who suffer just as bad if not worse because of the established medical system. And that’s a scary though. 

*This is actually a quote. Michael Specter actually said this. It’s in this NPR interview, used to refer to the chronic Lyme medical community. 

Michael Specter: The Growing Battle Over How to Treat Lyme Disease

With all the incorrect information and dismissive attitude towards those who attempt to research and be cured outside of the shamefully backwards medical community, it’s hard to believe that this is progressive. And yet it is.

"IDSA in a nutshell", a sarcastic performance made possible by the comments on NPR Lyme articles

As everyone knows, all these Lyme people are loonies. Completely illogical.

They clearly have no clue about any science at all.

image

They can never cite statistics.

image

They have no idea about the history of medicine or about the behavior of spirochetes in general.

image

Oh, and god forbid they actually cite real researchers and read their articles.

image

They’re all so irrational and scientifically uniformed. It’s not like people are ever symptomatic after three weeks of antibiotics or anything, or that Lyme rates have skyrocketed. Let’s stick with the same research we’ve been doing for the past thirty years.

Invisible Disability: The List of Things People Who Do Not Understand Invisible Disability Say

People have said some pretty hurtful things to me regarding my health although I’m sure they (most of them, at least!) didn’t mean to be hurtful in the least. Nevertheless, it is important for me to talk these things and point out to you why they are hurtful so you can try to avoid saying these things to others in the future. I know of people who’ve had people say a lot worse to them, but here are some examples of what I’ve been told personally:

     “You don’t look sick.”

     “You look great! You must be feeling better.” -On a day I could barely string two words together

     “Are you sure you just don’t have too much stress?” -A form of the classic “it’s all in your head” routine I heard a lot both from layfolk and doctors

      “It must be great to stay home from school. I wish I could!”

      “You get extra time on tests?? You are so lucky!”

      “I wish I could get out of gym class too.”

      “You drove your car? Why didn’t you walk?”

      “You might feel better if you exercised more.”  -This last one really goads me.

Can you see why these statements are so misguided? They insinuate that I do not have any health condition whatsoever; they assume that I am at the same level of capability and health as the person speaking them. These statements are all coming from people who knew that I was sick. Clearly, they did not either understand or believe that I was sick. You can imagine how very lonely I felt. How can you force people to understand that you’re struggling so hard to get by and that their words demean both you and your daily, endless fight? If people understood how much physical effort it took me to simply speak with them, would they still make make such careless and hurtful comments?

Read More

Invisible Disability: living with chronic disease

A big part of understanding invisible disability is understanding what it’s like to live with a chronic condition. I cannot possibly be able to explain everyone’s experience, as every person is different and no two conditions are ever the same. But I can try to give you as general an explanation as I can using my point of reference: my struggle with Lyme disease. I will speak in the present tense and the person I refer to will be YOU. I am trying to give you as real a picture as any I can make and help you imagine what is is like to be chronically ill.

—-

Your alarm goes off after sleeping thirteen hours, which is never enough. You wake up, which is often a long and arduous process because you’re always tired anyways and not to mention you’re always in pain too, because every morning you wake up your lymph nodes are so swollen that rolling the wrong way on your arm will send of a wave a pain through your body, and your joints— well, they’re always painful. You have to take stock for the day. You think about everything you have to do for that day: all the homework, all the places you have to go, (and worse yet) all the places you have to walk to, all the reading and studying and conversing and other day-to-day activities that you have to do. This is pretty normal so far, right?

But first things are first. You have to walk to the bathroom to brush your teeth and bathe yourself. But the moment you finally muster the energy to get out of bed through your pain, you see an aura— you have a migraine coming on. You groan a little, put your feet on the ground but that strange pain you have on the bottom of your feet in the morning is acting up again. Oh well, you think. What’s some more pain on top of the pain you already have? But you are so weak that you must prop yourself on every piece of furniture or wall that you can, and cling to it for support for the few feet you have to travel to get to the bathroom. When you get to the bathroom, you have to sit for a few minutes to find the energy and to let the pain settle a bit before you even get a chance to get in the shower.

But your day has barely begun. You still have to somehow have to get dressed, making sure you put on clothes that won’t become agonizingly painful for the rest of the day. You have make it downstairs. You have to cook your breakfast. You have to clean up after yourself. And then, by some miracle, you have to make it to classes, listen to the teacher, work out what she’s saying through the other students whispering, and remember it by an even greater miracle as your foggy brain struggles to understand words and and your body is in agony and you are so very, very, very tired. The harder push, the harder your condition pushes back. The more you struggle, the more you try to do, the deeper you sink into the depths of your illness.

Read More

Invisible Disability

It’s not like me to be extremely serious, I know, but there’s something out there that many people don’t really understand or even knows exists. I’m not a great expert in the field outside of simply being a person affected, but regardless I feel it is important to open up this discussion. And it’s something that really needs to be addressed.

Just because a person doesn’t look sick doesn’t mean that they aren’t.

On behalf of all those who suffer but may not look it, I’m going to talk about invisible disability. This may or may not be a statement you are familiar with— it is, in a nutshell, the idea that while it may not be physically visible, a person’s disease or disability can still exist and is just as real as someone whose disease is visible. You do not have to have a pronounced physical deformity in you leg to have trouble walking. You do not have to have a terrible cough, lose a lot of weight, or really anything at all to feel chronic, extreme fatigue.

An invisible disability is a broad category, and it can be various mental health conditions to things like pain and fatigue. But people with visible disabilities— say, someone in a wheelchair— can also have invisible disabilities— the medicine that said person in a wheelchair takes for their chronic pain condition makes them feel sick or groggy.

For people who have the luxury of being healthy all their lives, those who do not personally feel the daily— hourly— struggles of having a debilitating condition regardless of its manifestation, this can be hard to understand. It is perfectly understandable to not know, and you are, in fact, lucky to not know. Which is why I’m writing about this now.

The instigation for this post is that this month— May— is Lyme Disease Awareness Month. I have personally struggled in a world that has a lot of people who don’t understand the concept of invisible disability. In fact, I have struggled in a world that has trouble understanding that I could even be sick in the first place. It’s terrible to feel that pressure. It’s terrible to feel like everyone believes you a liar because they simply can’t comprehend what’s going on in your body.

I’ll be making a series of posts about invisible disability in conjunction with Lyme Disease Awareness Month. My posts aren’t just going out to the Lyme community, they’re going out to the world. They are meant to be read by everyone, healthy, struggling with disease and disability, young, old. We are all members of a community that encompasses all sorts, and we all need to be aware of the impact we make on each others’ lives daily, and comprehending invisible/visible disabilities will help us do that. So please take a few minutes to read these posts. People with disabilities often struggle to live in a world that is not engineered for us, and every bit of understanding can make our lives a little bit better.

Lyme Guide Lines Petition

nekochan11252:

Congress is possibly going to remove and rewrite the guide lines for treating Lyme. It came out almost a month ago but I just found out. Will you please sign the petition? It doesn’t take long and it can make a HUGE difference to so many people. 

From the folks formerly known as CALDA— please sign!