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Welcome to My Lyme Diary. Here I document my journey with Chronic Lyme Disease while spreading positivity and love in hopes of inspiring you to never, ever give up.

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Zika, Zika, Zika... what about Lyme?

Zika, Zika, Zika... what about Lyme?

I've held off writing this for a bit because I honestly didn't want to be the person who's like "yeah but what about us!!" But last night I decided to look up some facts, you know, to see if I even had grounds to put this out there... and it turns out, even by the CDC's information (that we know isn't 100% accurate) this article needs to be written. 

As someone who deals with Chronic Lyme Disease every single day of her life there are two things that worry me:

  1. Yes, I worry about Zika.. I barely leave my house and when I do I'm covered in (natural) bug spray. Mosquitos LOVE me, but I refuse to get another infection on top of Lyme, Babesia, Rocky Spotted Mountain Fever and all the other co-infections I won't bother you with here.
  2. What worries me more is the ignorance surrounding Lyme disease and Zika.

Here are some facts (according to the CDC's website):

ZIKA

  • Locally acquired mosquito-born cases: 29
  • Travel-associated cases reported: 2,487
  • Laboratory acquired cases reported (wtf): 1
  • Total: 2,517

    • sexually transmitted: 22
    • Guillain-Barré syndrome: 7
  • US Territories:
  • Locally acquired cases reported: 8,968
  • Travel associated cases reported: 43
  • Total: 9,011 (not including sexually transmitted if in US territories)
    • Guillain-Barré syndrome: 26

This means the total Zika cases as of August 24, 2016 (including US territories like Puerto Rico) are: 11,528

Symptoms of Zika are flu-like and don't last very long. The disease itself (according to the CDC, and people who have actually had it) isn't too bad.. it only really becomes a problem if you are pregnant. 

Now, let's look at the Lyme Disease Stats. According to the CDC.

The CDC originally thought there were 30,000 people per year who were infected with Lyme Disease (in the US). "To improve public health, CDC wants to know how many people are actually diagnosed with Lyme Disease each year and for this reason has conducted two studies."

"Results of these studies suggest that the number of people diagnosed with Lyme disease each year in the United States is around 300,000." This is according to the CDC. Other groups like ilads.com provide even more in-depth research and numbers that I will get into later.

Lyme disease is debilitating if left untreated. If you get Lyme, and are one of the lucky ones to see a rash and actually find a doctor who believes you (yes, because most doctors I've come in contact with don't even BELIEVE it's possible to get Lyme).. well if you find that doctor and get on treatment right away, chances are you'll eradicate Lyme from your system. I won't get into treatment details because honestly there is no set treatment yet. If you aren't so lucky and that Lyme turns into Chronic Lyme because doctors have been negligent pretty much your whole life.. telling your mom you are just "looking for attention", "lazy", "depressed" etc... then your problems just magnified by 100. Chronic Lyme disease feels like you have the flu every single morning of your life, in addition to symptoms of arthritis, fibromyalgia, lupus, ms, alzheimer's, parkinson's and severe anxiety/depression every day. See, Lyme mimics a bunch of diseases, not limited to the ones listed above. Symptoms change day to day, sometimes minute to minute. It's like your body is living in hell, and every medical professional is telling you you're making it up. That's not even the scariest part. The scariest part is people are dying from Lyme. The most common way of death is by "suicide", I put " " because it's not really suicide, that person would've never in their right mind taken their own life. The disease took their life. It infected their body and brain and made it intolerable to live anymore. I personally dedicate 100% of my time to clearing those thoughts out of my head and ONLY thinking positive, sometimes even ignoring scary symptoms so my mind doesn't get wrapped in the severity of it all. But scarier than that? People are dying of Lyme Carditis, when Lyme enters their heart and it just stops.

THIS IS REAL. LYME KILLS.

I have tried to look up the facts of how many people per year die from Lyme but I can't even find that... I can tell you though, that through personal Facebook Lyme support groups I see at least 1 new death per month. For someone who's living with Chronic Lyme Disease, in Miami, where not even the infectious disease doctor (who retested me because he didn't believe me, and that test came out positive for Lyme as well), not even he believes that I could possibly have Lyme. Meaning I have to travel out of state every month to get treated. Oh, and nothing is covered by insurance.. 

I could go on and on about this issue but I want to stick to the point. My question is.. WHY is there such an urgent response to a disease that has affected a total (in the US) of 2,517 people but no immediate response to the over 300,000 people per year infected with Lyme. I've stayed quiet for too long, but someone has to say it. Lyme patients are dyingit's time to take this seriously.

An Open Letter to those who say "But you look great, you must be better!"

An Open Letter to those who say "But you look great, you must be better!"

Look, the Moon!

Look, the Moon!