Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

May is Lyme Disease Awareness Month – Get You on Board!

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Don’t tell me you’re going to get sick of it. I don’t want to hear it.

May is Lyme Disease Awareness month. SO, I felt it only appropriate that I say something about it. Maybe even do something about it. And most certainly, write about it. Especially since, you know, there’s nothing preventing you from doing something about it too. Allow me to go on.

A lot of diseases have their awareness days or months or whatevers. Most are the lucky ones who get galas and walk-a-thons and marathons and celebrity-hosted telethons or concerts and various fund-raisers. As if I would ever have the gall to call someone “lucky” to have a disease. But if you are going to have one, bless you if the world acknowledges it. ‘Cause when it comes to Lyme disease, guess who had to come up with May as Lyme Awareness month? We did. Guess who tries our best from our sickbeds to organize campaigns and fund-raisers and organizations to promote the truth about Lyme and hopefully… hopefully make some type of small little dent in the fallacies surrounding our disease that are typically promoted? We do. I’m going to teach you a little something about Lyme right now. I’m going to tell you why this is so. Because maybe you think we are all attention-seekers and getters and wanters and it’s all a bit much you feel, or maybe you can hardly contain an eye-roll when you see another person take a bite out of a lime for the Lyme Disease Challenge. Guys, I get you. I’m so that person too. But we do it because no one else will. AND because we, with our doctors, are the only population of people who recognize the severity of a dangerous disease that not only perseveres the  standard CDC recommended course of antibiotics, but is also on the cusp of becoming pandemic. Source and more source.

Those staying on top of the rising cases of Lyme, the emerging research, and the way Lyme patients are being treated by the CDC, IDSA, their insurance companies, and even their trusted medical doctors are beginning more and more to confidently announce Lyme to be the next AIDS crisis. In her article From AIDS to Lyme: Will We Let History Repeat Itself by Jessica Bernstein, she states:

     “Anyone who lived through the AIDS epidemic of the early ’80s will never forget the unimaginable devastation that was inflicted upon an entire generation of people. But too many Americans younger than 40 have little knowledge of this profound chapter in American history or the revolutionary struggle waged by AIDS activists to propel the disease into the national spotlight and force government officials to address the mounting epidemic”.

 

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AIDS protest vs. Lyme Protest

Currently, the CDC and IDSA Lyme guidelines allow for only an acute form of Lyme Disease that is cured with 14-21 days of antibiotics. They believe Lyme disease is “hard to catch and easy to cure”. Any with remaining symptoms after that are classed as having “Post Lyme Treatment Syndrome” for which there is no medical help in existence.Why is our government ignoring the realities and dangers of chronic (or late-stage) Lyme disease?

Money. Ego. Greed.

Okay, so… why does it matter? “The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions… Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are widely cited for conclusions that chronic Lyme disease is nonexistent”. Source

It is suspected that pharmaceutical companies have put a lot of money in the pockets of the CDC and IDSA so that current guidelines will not change. Hence the conflicts of interest. If for some reason you live under a rock and feel that pharmaceutical companies are the gold standard for integrity, I’m sorry to break it to you… Antibiotics, the main-stay of Lyme disease treatment, are cheap and markup is low. They are not big money-makers for big pharma. If they can mark up a drug and market it to the masses, regardless of the actual value of the drug or even just the ethics, they will. Consider this case where a previously cheap anti-inflammatory drug was bought out by a pharmaceutical company, who then raised the price from $1,650 a vial to more than $23,000 per vial and then marketed to a variety of other medical conditions, including MS. That’s just never going to happen with antibiotics, and these companies are out to make money.

Cases like that of Terri Reagan who was diagnosed with Lyme after becoming sick from a tick-bite are repeated ad nauseam . She experienced remaining symptoms after her standard course of CDC/IDSA allowed antibiotics. She suffered for years until finally seeking out a doctor who specialized in Lyme disease who then put her on an aggressive IV antibiotic program. Her insurance agreed to cover her treatment for one month. She was only able to afford her $6,000 per month treatment for two more months and then was forced to stop once she ran out of money. “The bottom line is if you suffer from chronic Lyme disease and don’t have the money for treatment, you’re screwed,” Reagan says.

As for me personally, I have seen this so many times. I have seen far too many “Go Fund Me” pages set up for the chronically ill Lyme sufferer who simply suffers due to the inability to afford out-of-pocket treatment. Treatment that works but takes time. Treatment that is denied because insurance companies are all too happy to enforce CDC (and perhaps big pharma?) standards of care for Lyme disease if it will save them a few bucks too. This pains me. This PAINS ME.

And your doctor? Why does it take us so long to find one who will properly diagnose us and treat us?

     “Presently, it would be easy to blame your doctor for this, but not all doctors are to blame. Many are bullied by insurance companies who work hand-in-hand with the CDC and IDSA to not give their patients the whole story. They won’t tell you the FDA-approved Western Blot Test for Lyme is only about fifty percent accurate at best and that the longer you’re sick, the more inconsistent the test becomes. They won’t tell you there have been attempts to enact laws requiring doctors to tell any patient given these tests that they are about as reliable as a coin toss. They won’t tell you that a “bulls-eye rash” appears on people who contract Lyme less than fifty percent of the time. Most doctors won’t tell you these details because in the current medical climate, doctors are being dragged in front of medical boards and penalized for treating the disease as an ongoing bacterial infection and not just a quick thirty-day round of pills. Doctors have even had their licenses taken away for diagnosing and treating the disease beyond the IDSA-recommended treatment course [including my own doctor who had to close his previous clinic and declare bankruptcy after being sued an outrageous amount of money]. This is important to understand because it means that your old-fashioned idea of what a doctor does, and I am sure in many cases wants to do, is not real. Your doctor diagnoses the illness and is then forced to treat you based on what your insurance company says is permissible, and many are left with no choice but to treat you for something you don’t have out of fear of scrutiny.” Source.

Do you want to live in a world where your medical care is not coming from your doctor, but from your insurance company? Too bad. You already are.

But I digress. Back to the Lyme/AIDS crisis comparison. David France, director of How to Survive a Plague (an Academy Award-nominated documentary about AIDS activism) explains why AIDS was initially ignored, and why he believes history is repeating itself with Lyme disease. He says:

     “It is really hard to remember because it seems too improbable that a disease could wash into our country and be ignored politically the way this one was [AIDS]. One would have assumed that an apparently infectious disease would get responded to by public health authorities and politicians with some urgency and that just was not the case. And so what went from 1981 as an infection in 41 people that we knew of, since then was allowed to grow into a massive and global pandemic.”

As France began to notice similarities in the way the AIDS and Lyme communities were treated, he began to immerse himself in learning about Lyme and attending conferences to further educate himself about the disease. What he saw was a group of people who were indeed, very ill. A group who were also indeed, outcasts. And, like the AIDS patients in the early days, he saw many chronic Lyme patients having to go outside of the “system” to get their treatments and medications. He goes on:

    “Both diseases have introduced an unexpected paradigm into medicine. In the early ’80s, the medical establishment thought they knew everything about infectious disease, so when AIDS came along, researchers insisted that it could not be an infection. Instead, they assumed that the symptoms must be due to environmental factors such as sexual practices or recreational drugs.” Source. I love to give a good eye roll when one is due.

Dr. Jemsek, who has been treating me for the past year with great success, was also a pioneering AIDS doctor-turned Lyme specialist. His voice has made it into numberless publications as well. When speaking about the Lyme-centered corruption and cover-up imposed on the people by the IDSA and the CDC, his favorite response is always “the lie is too big to confess”, followed by “they know I’m getting people better”. But i don’t need to tell you about the ego of our government. Hopefully.

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More AIDS comparisons? Why certainly!

Lyme Disease May be Sexually Transmitted, Study Suggests

Lyme May be Passed to Fetus During Pregnancy

Lyme and Other Tick-Borne Illnesses Can be Passed Through Blood Transfusions

Starting to sound like a little more than a simple tick bite and bulls-eye rash eh?

SO, if for some reason beyond me you are still confused about all the hullabaloo… confused as to why are us patients are so crazy for advocacy, I’ll try to break it down even smaller. Due to the political corruption involved, we have had to turn to private, “Lyme-literate” doctors who are willing to prescribe long-term antibiotics at the risk of attack from medical boards. The cost of these out-of-pocket treatments can be exorbitant, creating significant financial hardship for struggling patients. The average length of proper treatment for Chronic (late-stage) Lyme is usually one to five years. For those who need IV antibiotics, the cost can run as high as $12,000 to $36,000 and beyond, per year. Increasing numbers of us are forced to travel long distances to see doctors, are too debilitated to work and many of us are unable to afford private treatment. Those who cannot afford treatment must simply wake each day and watch themselves grow worse and worse, and often die.  All because the CDC and IDSA will not revise their Lyme Guidelines to reflect more accurate research. IT’S NOT LIKE WE’RE ASKING FOR GOLD BARS, IT’S JUST ANTIBIOTICS! We have no other option than to employ confrontational tactics like those used by the AIDS Coalition to unleash power to force those who are in power to ACT.

Us sicklings, we try to do our best, but it’s a small movement – a lot of us are in wheelchairs y’know. So, do you want to get involved? Do you want to do something?

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Lyme Awareness Month would be a great time to do something, hint hint.

Here are some great Lyme-related causes below:

  • LEGALIZE LYME! Sign this petition to our President and members of Congress to take the following actions:

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.

*note, you may have signed one like this before. You may have even signed a few. Unfortunately, we can never get enough signatures to meet minimum requirements. We won’t stop making petitions until we do. Help make this one work!

  • LymeAid 4 Kids provides $1,000 to eligible children for diagnosis and treatment. Donate Here.
  • ILADEF, a non-profit organization, raises funds to help educate physicians from around the world about the complexities of Lyme and how to better diagnosis and treat it. Your donation can help underwrite the cost of a doctor to attend an ILADS conference and/or receive hands-on training while being mentored by a Lyme expert in his/her office. By donating to ILADEF, you will be supporting cutting-edge researchers whose work will directly help doctors treat tick-borne diseases with the most advanced innovations. Take part in the “Take a Bite Out of Lime” Lyme Disease Challenge and Donate Here. Don’t want to donate? That’s okay. Join the challenge anyways and just simply spread a fact about Lyme through social media. Spreading education is all part of the battle! Here’s how to participate. safe_image
  • Support the Mayday Project. The Mayday Project was formed by volunteers who have been touched by Lyme in many ways. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research. Join their current efforts here or here
  • Support the LymeLight Foundation by donating here. Created by professional freeskier Angeli VanLaanen after her own struggle and recovery from Lyme Disease, the LymeLight foundation provides grants to enable eligible children and young adults with Lyme disease to receive proper treatment and medication as well as raising awareness about Lyme disease. Watch her story below. 
  • Support the protest planned at IDSA headquarters in Washington DC on May 1st demanding the recognition of Chronic Lyme and allowing us proper treatment. Visit here to learn how to support either in-person, through a letter, or more. download
  • East-Coaster? Join Live-Laugh-Lyme and the University of Delaware’s 5k run/walk! Melissa, the creator of Live Laugh Lyme is an amazing gal, you can learn more about her here. Donations can be made to Lyme Disease Association. Instructions below.When: May 9th, at 10AM! Walkers and Runners will be signing in by 9:30am!
    Join the fun and help increase awareness!! Music, water, and snacks! A FREE T-SHIRT is included in participating! ONLY $15 to register! Money will not be collected until the DAY OF during SIGN-INS!

1. Participate: it’s open to BOTH students and the community! 1. REGISTER NOW!!! https://docs.google.com/…/1x0uuBmt40TbYi_SNZUFotaR-Wt…/edit…

2. Volunteer by Adding yourself to the Google Doc: https://docs.google.com/…/1YA7LMuaBHoUYjOF0yKDjltkU5B…/edit…

3. DONATE to Lyme Disease Association, Inc. (LDA), “non-profit, charity focusing on research, education, prevention and patient support.”

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  • Want to do something a little more personal? Help my friend Sonya get the treatment she needs in a country that will not pay for her medications either. She’s super deserving. Just trust me on this one. 

Ok, so hopefully NOW you know a little bit more about our plight, our need for supporters, for helpers, for revolutionizers

Happy Lyme Disease Awareness month everyone. Let’s get to it.

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My own Lyme stats:

  • Acquired Lyme disease 13-15+ years ago.
  • Never got a bulls-eye rash
  • Was initially diagnosed with Chronic Fatigue Syndrome in 2003
  • Was never told about Lyme disease or offered testing for Lyme Disease when I initially became ill
  • Lived with the latent infection as it traveled, unbeknownst to me, to my brain, nervous system, and several organs.
  • Experienced sudden, severe and incapacitating symptoms in June 2013
  • 3 ER doctors, 1 Neurologist, 1 Cardiologist, 1 Endocrinologist, 2 Primary Care Physicians, and 1 Naturopathic Doctor would not properly consider my symptoms as that of from an infectious disease
  • Was refused proper Lyme disease testing by 2 of those doctors, despite my request.
  • Was told I had a mental illness and needed medication
  • Had to travel out-of-state to find a doctor who would properly test and diagnose me
  • Had to travel to the East-Coast every 4-6 weeks for almost a year for proper treatment “out of the system” which included aggressive intravenous antibiotic therapy due to my disease now being considered “late-stage”
  • Due to lack of involvement from my insurance company, fears of treatment shut-down or potential complaints filed against my doctor, my day-to-day medication injections/infusions and PICC line dressing changes were managed by myself and my family for nearly a year, despite typical medical establishments requiring home nursing care or doctor office visits for like-care.
  • I frequently had to withhold information about the former from questioning doctors seen during my treatment for either emergency or routine preventative care.
  • Disputed claim denials and received rejections on all from my insurance company for medical care despite being able to provide positive Lyme tests.
  • Endured horrific suffering due to Central Nervous System involvement typical of late-stage Lyme disease
  • Suffered severe financial stresses due to out-of-pocket expenses and insurance denials of several procedures, ER visits, and medications that have risen over $60,000 in one year.
  • Suffered the stresses put upon my spouse and family members as I required around the clock care for many months
  • Required two separate peripherally inserted catheters (PICC lines) throughout the course of my IV treatment
  • Risked deadly infection, sepsis, and blood clots to undergo my IV treatment
  • Lost my employment due to the severity my illness became from being untreated for many years
  • Was denied disability due to lack of credibility chronic or late-stage Lyme holds in governmental institutions

All could have been prevented had my disease been caught earlier by my family practitioner or a couple of ER doctors well over ten years ago had they either been properly trained in recognizing Lyme disease or had been willing to step outside the boundary lines of CDC and IDSA Guidelines, even just a tad, and openly discussed with me the possibility of infectious disease and/or tested me despite the absence of a rash.

I am no unique snowflake when it comes to Lyme.

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8 comments on “May is Lyme Disease Awareness Month – Get You on Board!

  1. Pingback: May is Lyme Disease Awareness Month – Get You on Board! | I Will Survive Chronic Lyme Disease

  2. bloggerlenny
    April 21, 2015

    Reblogged this on The Lyme Bean Chronicles and commented:
    thank you for every word ❤

    Liked by 1 person

    • tarathackeray
      April 22, 2015

      Thank YOU for the reblog 🙂

      Like

  3. Tony Sorensen
    April 20, 2015

    Your story gets me everytime. In the world we live in, if someone can’t make money, it’s not worth their time. Are lives worth their time? They should be. I hope that people will get on board with this

    Liked by 1 person

    • tarathackeray
      April 20, 2015

      Thanks Tony. I almost feel guilty that we were somehow able to afford my treatment when SO many cannot. Your comment is on point.

      Like

  4. Rainbow
    April 20, 2015

    you’re****

    Like

  5. Rainbow
    April 20, 2015

    Awww Sis! Thank you so much for your little wink to my page 🙂 You look amazing, both from outside than inside! Your my soul Sis ❤

    Liked by 1 person

    • tarathackeray
      April 20, 2015

      Of course. We are in this together!

      Like

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