Hold Onto Hope: My Story Is Not Over

Hold Onto Hope For Lyme Disease Awareness Month

MAY IS LYME DISEASE AWARENESS MONTH. 

My theme this year, as always, is HOPE. More specifically HOLD ONTO HOPE. 

That's what I do. It sums up my heart.

AND KENTUCKY, IT'S LYME AND TICK-BORNE DISEASES AWARENESS MONTH IN OUR STATE. Governor Beshear signed the proclamation last month. 

So everyone please be aware of and check for TICKS whenever you, your kids and grandkids, or pets have been outside. Also, educate yourself about ticks and tick-borne diseases. As many of you know, I have Lyme Disease and it's absolutely no joke whatsoever. It can be very serious, debilitating, and life-changing. I was misdiagnosed with MS for many years (as well as a few other things), which only complicated everything. Unfortunately, this is all too common. 

Many doctors are unaware of how LYME DISEASE presents (its not always textbook), that the Lyme bacteria is polymorphic or can change forms (three to be exact), and that the infection can become chronic or long term. It is often misdiagnosed or dismissed altogether. The one longer goes without proper treatment, the more the bacteria entrenches itself in tissues and can disseminate throughout the body. Lyme-literate physicians have a better understanding of this. 

It's nicknamed "The Great Imitator" because it can mimic so many other diseases and illnesses. Standard tests are NOT highly accurate and only check for 1 strain of the bacteria (Borrelia) out of a possible 100 strains that can cause Lyme or Borreliosis. Testing from Lyme and Tick-Borne Diseases specialty labs are more accurate and thorough. Having said that, Lyme is ultimately a clinical diagnosis. Labs are a diagnostic tool. 

ALSO not everyone gets a Bulls-eye rash. Many get a different type of rash altogether. Symptoms vary from person to person. Generally, if you ever feel like you've got the flu and cannot get over it, especially in late spring and summer months, or if you have persistent fatigue, recurring fevers, neurological, cardiac, and/or joint and muscle issues, it could all possibly be rooted in Lyme Disease or another tick-borne illness. 

In addition to Lyme (Borrelia), ticks also carry other pathogens like Babesia, Bartonella, Ehrlichia, Anaplasmosis, Rocky Mountain Spotted Fever, Typhus, Powassan Virus, etc. Lyme is actually more of a disease complex that often includes multiple infections. Whatever the tick is carrying, is what gets transmitted if you are bitten. Not all ticks are infected but some are. Know that while ticks are the primary mode for transmission, other insects can carry these bacteria and viruses too, i.e. mosquitoes, flies, spiders, mites, fleas. 

It is a fallacy that a tick must be attached 24-36 hours to a person before any transmission can take place. NOT TRUE. Any pathogens a tick might be carrying can be transmitted as soon as a person is bitten. Ticks have an anesthetic in their saliva that actually numbs the surface of the skin so you don't feel the bite. That is why many people never know they've been bitten.

It is also a fallacy that Lyme Disease is only found in north eastern states. Lyme has been found in all 50 US states, as well as Canada and throughout North America, South America, Australia, Asia, and Europe.  

If you are interested in knowing more about Lyme and other tick-borne diseases, please go to ILADS.org (International Lyme and Associated Diseases Society) and LymeDisease.org. Or check out my Resources and What Is Lyme Disease? sections for more detailed information. 

For more information on the science behind Lyme Disease, please read my blog post Recent Lyme Disease Research Breakthroughs (which I'm now working on Part 2). 

Please also consider reading a series of posts below about The Complexities of Lyme Disease by Thomas Grier, MS. 

The Complexities of Lyme Disease (Part 1): The Structure of the Lyme Bacteria

The Complexities of Lyme Disease (Part 2 ): Motility of the Lyme Bacteria

The Complexities of Lyme Disease (Part 3): When Lyme Bacteria Infects the Brain

The Complexities of Lyme Disease (Part 4): Lyme Receptors 

I don't advocate living in fear. My intention is to spread awareness, support and encourage fellow Lyme and tick-borne diseases warriors, and help educate others along the way.

This is a long, hard journey, but I believe there is always HOPE. For all of us.

And that is what I aspire to and advocate.

~ Michelle