Blog post,  Life with Lyme Series,  Lyme Disease

A Lyme Disease Rant You Need to Read!

June 1, 2016

A fellow Lyme Warrior — Lindsey Kozlowski — shared a posting on FaceBook, which I am proud to publish here on Reflections with Terry, formerly Color Me Lyme.

Lindsey’s words are eloquent, poignant, and powerful. I am rather envious of her brilliance!

Thank you, Lindsey, for sharing your brilliance with and on behalf of the Lyme community.

A Lyme Disease Rant You Need to Read!

By: Lindsey Kozlowski

“It’s about to get real up in here. Apologies for the long post in advance.

I never wanted to be “that girl” – the one cluttering everyone’s news feeds with alarmist claims and inconvenient truths, just because my life is affected by something. I never want to bring any more fear or negativity into this world; there’s enough of that already. I never want to make my illness my identity, and I work hard so that it’s not. But it’s difficult to stand by for years, and watch the continued denial, ignorance, and gross negligence of something that’s destroying lives and families all over the world.

Lyme Disease is the new AIDS.

Skeptical about that? Please read on. The statistics and the data are irrefutable. The millions suffering are undeniable. Studies are finally proving that’s it’s a devastating, life-altering, sometimes fatal disease.

May is Lyme Disease Awareness month, and for my #TakeABiteOutOfLymeChallenge… it’s time to clear up some misconceptions.

Most people have little understanding of what Lyme really is. Nor do they realize what patients are up against, how devastating the disease is, or how long the treatment process can take. And this is an important issue for everyone, because no one is immune.

Chronic Lyme is a deeply complex, multi-system, neurological, AIDS-like infectious illness that evades and destroys the immune system, and infects every organ, muscle, tissue and cell of the body, including the brain, heart and nervous system. (Read: it’s some serious shit.)

And unfortunately, Lyme is no longer just “Lyme.” In addition to borrelia burgdorferi bacteria, ticks are host to all sorts of co-infections that can be simultaneously injected into your bloodstream with one small bite, seriously disarming your immune system and severely complicating your treatment prognosis. Some prefer the term MSIDS (Multiple Systemic Infectious Diseases Syndrome) because it more accurately describes the incredibly complex nature of Lyme that is so very difficult to treat. Instead of having one serious infection, patients have an average of 7 or more.

And yet this disease (or more accurately, collection of diseases) is systematically ignored and denied by the CDC, the IDSA, the medical community, medical academia, the insurance industry, and society. Despite more than 700 peer reviewed journal articles proving otherwise.

We’re told that 30 days of antibiotics eradicates Lyme, even though there isn’t a single scientific study demonstrating the efficacy of 30 days of antibiotics on borrelia burgdorferi. And for the millions of people who were misdiagnosed, who didn’t even get the measly month of abx in the first place? Well…the CDC and infectious disease doctors claim it can’t be Lyme because “chronic Lyme doesn’t exist.”

Thankfully, there are still a few doctors who like to exercise common sense, who recognize the seriousness of the disease and treat us anyway. And those doctors are persecuted and risk their licenses and their livelihoods every single day.

We’re talking about gross negligence here. The entire government and healthcare system colluding to deny patients vital treatment.

Because of this, Lyme is a “do-it-yourself” disease. No other serious disease requires massive amounts of patients to regularly diagnose, research, treat and heal themselves. To become their own health experts. To know more about their disease than their doctors. To regularly pay tens of thousands of dollars out of pocket for desperately needed treatment because insurance companies refuse to cover Chronic Lyme. Patients cough up $53,000 a year, on average, often times much more. Most are unable to work because of debilitating symptoms. And treatment is almost always a grueling, multi-year journey. Sometimes decades. Add it up. Can you afford to get bit?

No?

Well, sadly, your odds are not good.

Lyme is the fastest growing infectious disease in the U.S. and is now classified as a PANDEMIC, with more cases per year than breast cancer and HIV combined. That’s right. Lyme cases are six times higher than HIV/AIDS and twice as common as breast cancer – both invasive and noninvasive combined. And that’s just the Lyme cases that the CDC recognizes – you know, the same people who deny that Chronic Lyme exists. The actual number of cases, plus the number of people misdiagnosed is alarmingly astronomical.

Yet it gets LESS THAN 1% of the funding. Let me say it again.

Less than…

One.

Percent.

It’s absolutely criminal.

Standard Lyme testing is ridiculously inaccurate and archaic, leading to so many people misdiagnosed, marginalized, shamed and blamed for our symptoms being “all in our head.” So many of us are told it’s depression, “fibromyalgia”, anxiety, lack of sleep, “chronic fatigue syndrome”, growing pains, early MS. So many of us are left to become human petri dishes while the most intelligent bacteria known to man (seriously, look it up; borrelia burgdorferi has the most advanced genetic profile of any bacteria) and all the other co-infections, viruses and parasites replicate inside us for years until maybe we finally get a proper diagnosis, and by that time, it’s destroyed our immune system and burrowed into every area of our bodies.

Early detection and treatment can make a world of difference. And while I’m genuinely happy for people who get treated after a tick bite and are well, those cases only further confuse the public on the seriousness of the disease. Comparing someone who was immediately treated for acute Lyme with misdiagnosed, late stage, Chronic Lyme is like comparing someone who got a cancerous mole removed to someone with advanced metastatic cancer. It’s just not the same. Moreover, someone who has Lyme for 2 years is going to present differently that someone who has Lyme, Babesia, Bartonella, Ehrlichiosis, Rocky Mountain Spotted Fever, mycoplasma and Epstein Barr for 10 years. We know cancer cases are highly individual, why do we not understand that it’s the same with Lyme?

Lyme patients are often marginalized because we “don’t look sick” or because we were functioning okay before we got diagnosed, only to later be MIA from normal activities, bedridden, or in a wheelchair. Well, similar to cancer patients who can look completely healthy until they begin chemotherapy, Lyme patients often look the same as they always have. But as soon as they start treating the multiple infections, they will absolutely get sicker. This is because when Lyme bacteria die, they release large amounts of neurotoxins into surrounding blood and tissues at an alarming rate, that can kill surrounding cells, overburden our systems with toxicity, and in general make us feel like shit. This is called a herxheimer reaction. While Lyme treatment does not cause us to lose all our hair, it is similar to chemotherapy in that way. Our healthy cells die in an attempt to keep the microbial infections from spreading.

A lot of people mistakenly think Lyme is just joint pain and fatigue, but patients deal with so much more on a daily basis. Lyme can cause hundreds of symptoms (most of them invisible) that range from inconvenient to completely debilitating or deadly. Just google “Lyme fatalities.” Yet, going to the emergency room as a Lyme patient is fruitless. When I almost died of sepsis, the hospital refused to consider Lyme. When I had bouts of paralysis and uncontrollable vomiting, the ER would tell me I was just dehydrated or that I must have an unexplained virus. I know Lyme patients who have 15+ seizures a day, and the ER will turn them away, stating there’s nothing they can do. Most people will never know the unique hell that is feeling so sick that you need urgent care, but realizing that no one will help you. But Lyme patients do.

Most people have no idea about the type of wreckage untreated Lyme can cause to the body. I find it interesting (and horrifying) that my personal doctors, as well as other top Lyme doctors in the country, have yet to have a single patient with MS, Parkinson’s, Alzheimer’s or ALS that did not also have a Lyme infection. I’m not going to claim that these diseases are actually misdiagnosed Lyme (even though they very well could be in some cases) but Lyme is almost always part of the root issue. And we are beyond overdue for a paradigm shift in the way we diagnose and view neurological diseases touted as unpredictable and incurable, many of which are now scientifically proven to have microbial causes.

I could easily go on. Moral of the story: Lyme absolutely SUCKS. But the denial, complete lack of understanding, judgement, and minimization of it sucks even more.

Lyme patients are literally victimized in countless ways, first by a disease that robs us of our lives and inflicts unending pain and suffering…. Second by a healthcare system that ignores, ridicules and denies us…. And thirdly, by family and friends who doubt us, grow tired of our pain, blame us for not pushing through, fail to support us, or who walk away from us completely.

This has to stop.

Millions of people are suffering daily, left to fend for themselves while trapped somewhere between living and dying, desperately hoping for either.

At this rate, it’s almost guaranteed that either you or someone you love will have this horrifying disease, if that’s not already the case.

I realize these are uncomfortable truths to consider. I myself, regularly distance myself from thinking about or dwelling on these realities, purely for my survival. So it doesn’t taint my ability to press forward. So it doesn’t bleed into my mindset or my hard-fought ability to stay hopeful, years into grueling treatment. But this problem is not going away. And while I’m uncomfortable ranting about this on social media, I know that staying silent is much worse.

I will never stop advocating for those who fight for their lives in ways that are continually ignored and unrecognized. I don’t want others to have to suffer the same misunderstanding and ridicule that I have for years. Dealing with the debilitating physical effects of the disease, and losing control of your life is MORE THAN enough.

I hope and pray that one day, people wake up and treat this disease and those suffering with the seriousness it deserves. Until then, I will speak up and spread awareness until we have better understanding, accurate testing, and affordable treatment for all.

Please.

I urge you to take a few minutes and get involved.

Do some research. Share an article. Heck, share this post. Watch the documentary “Under Our Skin.” Take a bite out of a lime, and share your selfie with a Lyme fact. Donate to ILADS. Tell your loved one with Lyme how strong they are. Politely correct those who spread Lyme myths. Any little bit helps. Get informed, keep an open mind, and if you have any questions at all, just ask.

But if you take nothing else from this post, above all else, be compassionate. Lyme patients are fighting for their survival in ways most can not even begin to comprehend. There’s no excuse for adding to the pain because you don’t understand our “extreme treatment choices,” you think we need to “stop researching so much and get our mind off it,” or because you “haven’t heard of Lyme being that bad.”…”

 

Author of this necessary Rant, Lindsey Kozlowski

Lindsey’s Blog: Lindsey’s Lyme Life

I believe Lindsey sums up what every Lymie on the planet has, at one time or another, tried/wished to convey to the world. This posting is more than a fitting addition to Lyme Disease Awareness Month. Thank you for taking the time to read this powerfully written and important message.

Thank you to the Lyme community for helping to educate others about the debilitating effects of Lyme Disease and all tickborne diseases. Thank you for advocating for change, and bringing more awareness to the obstacles faced by those of inflicted with chronic/persistent/late-stage Lyme disease.

Until my next Reflection…

I shall close with a look at the hubs taking the Lyme Disease Challenge.

Gotta LOVE that face. Goodness knows I do!

Hugs, Blessings, and good vibes — always.

—Terry xx

#LymeDisease #ChronicLymeDisease #LateStageLymeDisease #TickBorneDisease #Babesia #Bartonella #Mycoplasma #ChronicIllness #LymeDiseaseAwareness #LymeDiseaseChallenge #TakeABiteOutOfLyme

Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm

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74 Comments

    • Terry Mayfield, The Blathering Lymie
      July 22, 2016 at 8:14 am Reply

      Lindsey – I am truly grateful to you for allowing me to share your words with others. I am thankful this posting continues to help raise awareness, and hopefully enlighten those who may not understand the sheer madness surrounding Lyme Disease. Thank you again for your Factual Rant About Lyme Disease.???

  • mymeenalife
    May 8, 2017 at 7:12 pm Reply

    Great post by your friend. And especially poignant since I just read this morning that the tick population in the Eastern USA is waaay up this year. 🙁

  • Martha Spielman
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    Thank you for your words. My daughter has had Lyme at 30 yrs and is fighting for her life now. We are with you!

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