Lyme Disease Petitions

These are 2 Lyme disease petitions featured on change.org that you should sign and I will tell you why…
(Picture via "Calling for a Congressional investigation of the CDC, IDSA and ALDF" petiton featured on change.org)

(Picture via “Calling for a Congressional investigation of the CDC, IDSA and ALDF” petition featured on change.org)

Calling for a Congressional investigation of the CDC, IDSA and ALDF,” is the first petition.

Before I summarize what this petition is about, I first wanted to mention that CDC, IDSA and ALDF are abbreviations of The Centers for Disease Control and Prevention (CDC), Infectious Diseases Society of America (IDSA), and the American Lyme Disease Foundation (ALDF).

“Calling for a Congressional investigation of the CDC, IDSA and ALDF,” was created by a man named Carl Tuttle who lives in New Hampshire. New Hampshire is one of many states (though Lyme disease is found in all 50 states) that has been hit hard by this growing epidemic. As I have learned through my personal experience fighting Lyme disease, one month of antibiotics does not fix all of the problems. One of the treatments I undergone, was long-term IV antibiotics. Insurances will usually only cover one month of antibiotics. That is if you are fortunate enough to have health insurance and/or access to care.

Why is this petition needed?

Patients have a hard time affording care, accessing care, and finding a treatment plan. Before getting to that point, many struggle with just getting the right diagnosis (or diagnosis’)! The petition states, “One way to stop an epidemic is to redefine it by narrowing the disease’s diagnostic criteria so tightly that it’s hard for any chronically I’ll Lyme patient to fit the profile and obtain insurance reimbursement…”

I happen to strongly agree and am fortunate enough to have health insurance (currently). However, my insurance doesn’t cover many of treatments I have undergone, currently undergo, and would like to undergo because I feel that they would be helpful. Most of them I’m not even able to access and I have to say I am very fortunate the care I do have access to. Why won’t insurance companies cover them? One reason I believe is that Post Treatment Lyme Disease Syndrome (PTLDS),which is acknowledged by the CDC, but is something that is rare. When it does occur, it’s not really a big deal and “does not interfere with daily activities.” Plus, you won’t find a diagnosis code for it. Why? I don’t have an answer.

All politics aside, one thing we all can agree on is that Lyme disease is a growing epidemic with inaccurate testing and poor treatment for.

At the time I wrote this, the petition needed a little less than 6,900 signatures to reach the 35,000 needed to move forward.

What I think is also great about this petition (besides the cause as a whole), is the updates. They are always extremely informative, interesting and aren’t flooding your inbox! The information is cited, which makes it credible and reliable, has recognition from politicians across the United States, I could go on and on, but decide for yourself!

The second petition that I am very supportive of, is called, Legalizing Lyme Disease.” It is in the early stages, which makes it so important that it gets the number of signatures it needs to move onto the next stage. With it being new, it is already close to the 15,000 signatures it needs to move forward, we only need about 2,200 more (again based on the time I am writing this).

The petition states that its goals are to:

“1. Legislation Expanding The Definition Of Lyme Disease To Cover Chronic Lyme And Co-infections

2. Legislation Protecting Doctors Who Treat Chronic Lyme And Co-infections From Insurance Industry-driven Investigation And Shut-down

3. Heavily Increased Funding For Research Into Chronic Lyme Disease And Co-infections

4. Greatly Improved Testing With High Accuracy Rates (As Seen With Ebola And Other Infectious Diseases)

5. Re-education Of Doctors And The Public Regarding Symptoms And All Treatment Options”

Both Alison Childs (the brave woman that started this petition) and I believe that the CDC has not taken enough action to prevent Lyme disease as well as and co-infections. Most of all, they have left patients chronically ill due to misdiagnoses, inaccurate testing, and patients unable to access treatment(s). Patients live disabled, yet continue to fight to get better. However, this leaves not only themselves, but their families in huge amounts of debt. The amount of energy searching for doctors and treatments to try — hoping each time this will be the answer — or the doctor that has the cure, or at least minimize symptoms, is exhausting, to say the least.

Not only has Alison created this petition, but has created an amazing website, LymeStats.org. On the website, she shares infographics to make information about Lyme disease (and the controversy that surrounds it) more appealing to audiences. Therefore, I believe people will be more likely to pass along the information/pictures, spreading awareness quickly and efficiently. Who you rather read plain text, or read a great summary of information that goes along with an appropriate, fun picture?

I cannot express how much I love the pictures and how I would love to contribute and do some myself, but when some days you need help showering and doing other daily activities, it cannot be something to use energy on; I mostly don’t have any at all.

Here are some of my favorites (this was so hard to choose):

41_penn316x316 46_children316x316 49_ebola316x316 04_rash316x316

(All info and stats from LymeStats.org)

Best of all, they cite the sources used!

They are even selling t-shirts to spread awareness and have a portion of the sales go to ILADS (International Lyme and Associated Diseases Society) , a non-profit that supports Lyme disease patients, funds research and much more.

Read more about the author here: “Hanging tough with America’s fastest growing infectious disease”

Sharing what it is like to live with Lyme disease & other chronic illnesses to spread awareness; health advocate;

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