Finding My Way Through The Colors of Lyme – Part 1 – The Rant

My writings today take on a more serious tone.  Full disclosure: as most of you who follow along with my Blatherings know, I am not a professional writer, nor do I play one on TV.  I will leave the detailed reporting to the professionals.   I am merely a blatherer with a message and strong opinions.

A while ago, an opportunity presented itself for me to share my story within the Lyme community.   The hope behind sharing my rather bumpy health journey: to help spread more awareness about Lyme disease, and to impress the importance of early detection.  How purposeful it would be, if my story could help even one person along their journey to finding wellness.

Due to the lengthiness, I have divided this blathering into two parts.  The following is Part one:

Finding My Way Through The Colors of Lyme – Part 1 – The Rant

My chronic illnesses include: Lyme disease, Babesia, Bartonella, Mycoplasma, MTHFR gene mutation (methylenetetrahydrofolate reductase deficiency – say that fast even one time!), Mast Cell Activation Syndrome (MCAS),and a host of other chronic ailments and autoimmune complexities. Quite honestly, the list is rather long and would more than likely bore you!

As I continue to learn more about the army of illnesses that have hijacked my body, I’ve discovered there are many others like myself battling for renewed health.

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• According to the CDC, Lyme disease is the fastest growing vector-borne, infectious disease in the United States. (See more at: ILADS.org)
• Researchers estimate that up to 376,000 cases of Lyme disease occur annually in the United States. (CDC)
• Lyme disease has been found in all 50 US states and in more than 60 other countries. (LivLyme Foundation)
• Some suggest there could be millions – yes millions – suffering worldwide from Lyme and related tick-borne diseases.

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Chronic Lyme disease is interpreted and referenced differently among medical professionals and the Lyme community: Multiple System Infectious Disease Syndrome, late stage Lyme Disease, or Post-Treatment Lyme Disease Syndrome.

There is an ongoing controversy over whether a persistent infection exists in patients suffering with chronic Lyme symptoms.  The reality of this debate is beyond maddening, especially for those of us who continue to suffer – daily, even while undergoing treatment.  I could definitely expand my thoughts and strong opinions on this further, but frankly that’s a bit more taxing than my Lyme infested brain can tackle within this Blathering.  Perhaps a separate rant for another day.

The comparison over the existence of chronic Lyme disease is all too similar to the AIDS/HIV controversy of the early 1980’s.   And adversely, we could be facing a similar pandemic with Lyme and tick-borne diseases.

The bottom line – PEOPLE ARE SICK!

Lyme disease patients are fighting for improved health, and in some cases their life – every single day.   In addition to having to be our own healthcare advocates, we pay out-of-pocket for our much needed and outrageously expensive medical care.  Since the CDC does not recognize Chronic Lyme Disease as an “acceptable” diagnosis, rarely is diagnostic testing or treatment covered by health insurance.

The life altering affects of these diseases leaves many debilitated and unable to function outside in the real world.  Destitute and without means to pay for their medications, their illnesses progress.  Sadly, if the disease itself does not cause death, many take their own lives because they can no longer cope with the agonizing pain and suffering.

THE STRUGGLE IS REAL!  

CHRONIC LYME DISEASE IS VERY REAL!

There is a reason for prolonged, persistent chronic illness – post (short-term) antibiotic treatment for Lyme disease.  Especially for patients who don’t receive treatment until well past the acute phase; suffering needlessly for years, sometimes decades like myself, due to multiple misdiagnoses.

We are facing a worldwide pandemic.   When is the CDC going to wake up?!!

Healthcare coverage is needed.  Additional funding and advanced research is needed.  Accurate and reliable testing is needed.  More advanced treatment options are needed. Further education is needed to allow healthcare providers the full capability to treat (the obvious chronic symptoms and conditions of) Lyme disease.

PATIENTS ARE SUFFERING!

It is imperative to look past the naive and outdated guidelines set forth by the Centers for Disease Control and Prevention (CDC) and Infectious Disease Society of America (IDSA).   The existing broken system needs to be fixed!

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Thank Goodness for ILADS,* Global Lyme Alliance, LymeDisease.org, and ALL organizations and foundations that provide research and education, advocate, and raise funding for Lyme and associated tick-borne diseases.

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*For those who may not be familiar, ILADS is The International Lyme and Associated Disease Society.  ILADS has established the Holy Grail of Treatment Guidelines for properly assessing and treating Lyme Disease:  Evidence Assessments and Guideline Recommendations in Lyme disease (ILADS.org).

Now we need the CDC to USE THESE GUIDELINES!

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So, what is the purpose of this Blathering?   To hopefully shed a little more light on the realities of chronic Lyme Disease.

Behind my general, semi-colorful way of sharing and coping while writing my blog posts, there still remains the not-so-fun part of real life.   Part 2  of this Blathering will provide a look into my personal health journey: my 40-plus years of living with chronic Lyme disease.

There is a strong possibility my health journey might have taken some different turns, maybe even been a little less bumpy, had I been properly diagnosed sometime throughout the decades of dealing with chronic illness.

Of course, none of us ever truly know what’s in store for us health-wise.   All we can do is our best to live a healthy and active lifestyle, and pray for good genes!   (And check for ticks.  Always check for ticks!)

There is nothing extraordinary about me, I’m just an average gal. My invisible chronic illness is the story.   Living with Lyme disease, Babesia, Bartonella, along with the myriad of chronic health issues mentioned earlier is the story to be told.   The story of so many, like me, who are fighting – every single day – to beat these diseases.

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Thank you for following along with my Rant – Part 1 of this Blathering. Please consider sharing this post with others, to help spread awareness about the very real issues surrounding chronic Lyme disease.

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The following link will connect you to the second portion of this series:

Part 2 – My Story – My Lyme Disease-Healing Journey

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Please remember – don’t let illness steal your joy!

Blessings and Good Vibes – Always!

Terry ? The Blathering Lymie

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#LymeDisease #ChronicLymeDisease #Babesia #Bartonella #Mycoplasma #MTHFR #MCAS #FindingPurposeInThePain #BlatheringsOfALymie #ColorMeLyme

* Updated – May 18, 2017