Still here.
Still hoping.
Still trusting.
Still believing.
Much love to all you Lyme warriors out there!
Michelle
Showing posts with label Lyme Disease Awareness. Show all posts
Showing posts with label Lyme Disease Awareness. Show all posts
May is Lyme Disease awareness month.
Did you know that Lyme disease is the fastest spreading infectious disease in America?
Last August, the CDC upped their official count of new Lyme disease cases in the US annually from 30,000 to 300,000 ~ A TEN FOLD INCREASE. But that's only an estimate of reported cases. Many Lyme diagnoses are not reported. Therefore, the real number is even greater.
Lyme is a tick-borne disease caused by the spirochetal bacteria, Borrelia burgdorferi (Bb). While ticks are considered the primary mode of transmission, other insects (mosquitoes, fleas, mites, flies) can carry the Lyme bacteria as well.
Lyme disease is found in all 50 states and many other countries including Canada, UK, The Netherlands, Australia, Germany, and China, among others.
For more detailed information please read What Is Lyme Disease?
For a better understanding of the Borrelia bacteria please read:
Living each day with the effects of this complexed disease can be challenging to say the least. Nevertheless lets keep fighting the good fight, my Lyme Warrior friends. We'll see this through together.
In FAITH, HOPE, and LOVE.
~ Michelle
There is a turning point for everyone.
A place where courage overtakes fear.
A place where adversity reveals true heart and character.
It is here, within the smoky haze of battle, that real heroes begin to arise, something stirring within them, fighting a fight they never asked for but pushing through nonetheless.
Wounded and weary from the prolonged fight, they wear their scars like service medals;
marking severe afflictions and commemorating hard-fought victories.
They do not stand alone but rather band together, supporting and holding each other up
along the way, not wanting to leave any behind.
But the battle takes some.
along the way, not wanting to leave any behind.
But the battle takes some.
Still, they journey on, for the time demands it.
They will not forget. Nor will they lay the torch down.
Perseverance surges through their exhausted bodies.
Wisdom and experience hold them upright.
And they war with an intensity that marks their call.
Humble.
Compassionate.
Tenacious.
Tenacious.
Resolute.
They step forward for this fight.
Praying for the strength to overcome.
And they'll keep working until they get it right.
Pressing on in fortitude, they take charge.
Believing the impossible to be possible, they change the atmosphere.
Now the truth is bearing down,
revealing what could not be seen before.
Now the truth is bearing down,
revealing what could not be seen before.
And then they emerge as the real heroes they truly are.
I've written this in tribute to all my fellow Lyme Warriors. I know the battle is brutal. I know you're weary. I also know you're stronger than you realize.
You make a difference. You inspire and encourage. And you are some of the gutsiest, most kindhearted people I have the honor of knowing. Thank you for your friendships and support. You are heroes every day.
Keep on keeping on.
Change is coming.
With much love, gratitude, and respect,
Michelle
It's May, and that means Lyme disease awareness month. Lyme is caused by the spirochetal bacteria Borrelia burgdorferi (Bb) transmitted through the bite of an infected tick. Lyme is primarily a tick-borne infection. However, transmission is also possible through infected mosquitoes, fleas, and other insects.
Lyme disease is not to be taken lightly. If left untreated or not treated sufficiently, it can disseminate throughout the body, damaging cells, organs, and tissues. It is a multi-system disease, meaning it affects many systems in the body. Long-term or chronic Lyme can significantly affect the heart, joints, muscles, nervous (central and peripheral), and immune systems. It has been documented that the Bb bacteria can invade the brain within the first 48-72 hours of infection. Lyme disease is also known as "the great imitator" because it can mimic other diseases and illnesses. Accurate diagnosis is paramount.
Remember ticks also often carry other serious pathogens such as Bartonella (Cat Scratch Fever), Babesia, Ehrlichiosis, Rocky Mountain Spotted Fever, Relapsing Fever, Q Fever, Tularemia, and Powassan virus. This speaks of the more common picture of Lyme disease today, which is chronic, relapsing, and includes multiple co-infections, such as those listed above, and other viruses, parasites, and fungals. This is more appropriately termed the Lyme disease complex. I'll be writing more about this throughout the month, the life stages of ticks, and how to properly recognize and remove them.
We are now entering the season that ticks are most active (mid-Spring to Fall). So please be mindful to check yourself, your kids, and pets for ticks after being outdoors. And don't forget to check those inconspicuous places like belly buttons, underarms, in and behind ears, between toes, and groan areas.
Educate yourself. Please see What Is Lyme Disease? for more detailed information about risk factors, safety precautions, and the symptoms and stages of Lyme.
Please see Resources for a list of helpful websites, blogs, and books related to Lyme, co-infections, and other relevant health issues.
You might also want to consider reading The Complexities of Lyme Disease series by Thomas Grier, M.S. Part 1 can be found here, or the entire series is listed in my blog archive (March and April 2013).
Michelle
May is Lyme Disease Awareness month and those of us who have Lyme Disease will be continuing to help bring greater awareness to this serious, debilitating illness during this time. Hopefully, Dr. Phil's show on Chronic Lyme, which aired last month, helped open the door to start dialoging about this more openly and began the much needed process of better education and awareness; even in the medical community.
Chronic Lyme Disease not only affects the person who has it, but their entire family as well. It takes a toil physically, emotionally, mentally, spiritually, relationally and financially. Lyme Disease knows no boundary. Many people are suffering from it's effects, including children.
If you don't have Lyme, perhaps you know or love somebody who does. I encourage you to acknowledge or support them in some way this month. Please share this link. Or you might consider right clicking on the photo above and saving it to post on your own blog, Facebook timeline or Twitter page. You can let others know who you are posting it for and/or that you want to help make people better aware of this disease. I so appreciate those in my life who support and encourage me; it means a great deal.
Ticks are everywhere and many entomologists are saying Lyme Disease cases may be much more prevalent this summer because of the unusually widespread warm winter we've had, which is the weather ticks are most active in. So it would benefit everyone to take the time to better inform themselves about the prevention of Lyme and other tick-borne diseases as well as the proper method of tick removal. I've listed some resource links below.
I invite you to go Lyme green in honor of Lyme Disease Awareness this month. Any support is greatly appreciated. It all makes a difference.
Thanks for reading. I'll be posting more on both my blogs throughout this month.
Blessings to you and yours.
Tick-Borne Disease Alliance
International Lyme And Associated Diseases Society
Lyme Disease.org
Lyme Aware
Lyme Disease: The Perfect Storm Is Headed Our Way (Huffington Post Article by Dr. Leo Galland, M.D.)
Those of us who are living with (and have been for many years) Lyme Disease know first hand how devastating and debilitating it is. It is also very misunderstood. So I was elated to see that ILADS, the International Lyme and Associated Diseases Society, will be running a public service campaign next Sunday at the Super Bowl on a Jumbotron outside Lucas Oil Stadium to bring greater and much needed awareness to the misdiagnosis of Lyme Disease.
Go to the following link to find out more about the campaign: International Lyme and Associated Diseases Society/Jumbo Tron Campaign
According to Dr. Leo J. Shea III, Ph.D., President of the non-profit ILADS, "Lyme Disease is a silent epidemic in America. We want to alert and educate consumers about this disease, which is often misdiagnosed. Left untreated, it will become chronic and debilitating. Tick-borne illnesses compromise your immune system and the diagnosis, which is largely based on symptoms, can be illusive unless a physician is Lyme-literate."
Another fantastic thing that ILADS is doing is the LymeWall. Check it out; these are the true faces of Lyme Disease. And sadly, some of these precious faces belong to children. If you're reading this and didn't know that children can get Lyme Disease too, I will tell you that it can and has been passed transplacentally during pregnancy to babies. I have a friend whose youngest child contracted Lyme from her during her pregnancy. She didn't know she had it at the time. He's been a sick little fella. If that isn't a stout eye-opener; I don't know what is.
It is my desire to help bring the much due and needed awareness to this disease. I was misdiagnosed for years with MS (Multiple Sclerosis), Transverse Myelitis (likely true secondary to Lyme and/or viruses), Post-viral Demyelinating Syndrome (also likely true), CFIDS (Chronic Fatigue Immune Dysfunction Syndrome; which is perhaps secondary) and Chronic Mono (which is true but isn't the root; its secondary) among a few others. We found out in 2010 that I really have Chronic Lyme Disease; the true root of this illness of 18 years.
I've written before that I have wondered many times what my life would be like had we found this out sooner. But, after much contemplation and prayer, I know it is a futile pursuit that I must, and do, yield to my faith in Christ. I still have hope for healing for all of us. I still have hope for a better future.
I plan on writing more this year to bring greater awareness and understanding to Chronic Lyme Disease and it's co-infections and how profoundly it affects ones life. It's time.
So what about it my Lyme friends? Should we add our pics to the mix on the LymeWall? Maybe some of you already have. I'm contemplating it. Nevertheless, I think it's great that ILADS, Open Eye Pictures and Burgess Communications are stepping up to the plate like they are. Kudos to them! And kudos to us who keep fighting this Lyme fight daily with integrity, perseverance and guts!
Love to you all.
Copyright © 2012 Michelle Holderman
I'm going to share some important news I have been seeking out for many years now. Ironically, I'm doing it preceding the national campaign for Invisible Chronic Illness Awareness Week (September 13-19, 2010). I honestly had no idea it would unfold like this, but that's just like God to set things up in this way.
Most of my family and friends know I've been chronically ill for the past sixteen years. What some might not realize is just how debilitating this illness is and how difficult it's been to find an accurate diagnosis. I've been told a lot of things through the years. I've been to a lot of places. I've gone through a lot of testing. And I've been through a lot of trial and error; so very up and down. It's been complicated, overwhelming, frustrating, draining, and disheartening.
Throughout the years, I've actively searched for the actual cause of this illness, even up until now. I've encountered some of the best and some of the worst that our healthcare system offers. That in itself forced me to change my thinking and make subsequent adjustments. And I thank God for it. For the past year, my doctor and I have pursued what we now believe to be the true root of this illness that has so changed my life and my family's life.
It is with a mixture of relief and reservation that I share this with you. I mean, this is the past sixteen years of my life briefly stuffed into this one tiny blog post. It feels rather peculiar to try and put something so profound as this into a few words. And it's bittersweet, too (if you're chronically ill and searching for answers, you know exactly what I mean). Honestly, I have wrestled with writing this, but I’ve earnestly felt the Lord nudging me to do this, so here it is.
I have chronic Lyme disease.
This implies I have had Lyme disease for a long time, and it's true. Longer than anyone really knew. I was misdiagnosed many years with MS and Chronic Fatigue Syndrome. But before that, some doctors found that I had several chronic viral and bacterial infections (EBV, CMV, VZV, Strep, etc.). Before that, I had been diagnosed with Post-Viral Demyelinating Syndrome, Chronic Mono, Transverse Myelitis, Primary Lateral Sclerosis, Vestibular Neuronitis, Optic Neuritis, and Migraine Variants secondary to MS, among other things.
All along, however, it's really been Lyme disease and secondary infections.
Yes, it's left my head spinning too.
Lyme disease is called "The Great Imitator" because it can mimic many other diseases, leading to improper and delayed diagnosis. This is what’s happened to me, and it happens to many others as well. It is a very complex, multi-systemic infectious disease that is caused by the bacteria, Borrelia burgdorferi. When left untreated, Lyme can and will disseminate throughout the body and cause significant problems—so it's been with me.
As many of you who live with chronic illness surely know, my story isn't simple. I couldn't possibly address the myriad struggles that have occurred. I want to share some of the invisible aspects of my illness, which is what Invisible Illness Week is really all about - bringing awareness to the fact that much of the suffering of chronic illness and/or pain isn't always visible to others.
Let me first say the most tangible and visible aspect of this illness is clearly my wheelchair. But what a lot of people don't really know is why I am in a wheelchair. And that brings me to some of the not-so-visible parts of this illness.
Chronic Lyme disease has greatly affected me neurologically, commonly called Neuro-Lyme or Late Stage Lyme Disease. I have weakness in my legs, which really stems from inflammation and damage to my nervous system. But you can't "see" that. I've had many problems with neuropathies, paresthesias, balance, disequilibrium, and gait. These are the primary reasons I've been in a wheelchair for thirteen years.
But there's more to this illness. Deeply profound chronic fatigue. Recurrent low-grade fevers. Muscle and joint pain. Chronic sore throats. Headaches. Light Sensitivity. And on and on it goes; so much is involved. I really can't express how debilitating the fatigue and fevers are on many days; it's so very draining. My immune system has been damaged as well. Co-infections and secondary infections are common in chronic Lyme because of this, so it is for me. The bacteria that causes Lyme has also affected my heart, liver, and spleen. You can't tangibly see much of that, either.
What can be seen are the effects of it, but they're not always recognized, and while this might all seem random in how my physical body has been affected, it is the very essence of chronic Lyme disease. It has answered many of the plaguing questions we've had about the complexity of this debilitating illness throughout the years.
For me, the good news is in finally knowing what I'm dealing with. I can't tell you how frustrating it is to not know what's really going on when something clearly is. And after so long, you just want answers, no matter what they are.
I recently began a treatment protocol for CLD. So this is all very fresh and emotional. I didn't just settle for the possible or probable. Instead, I've prayed and fought long and hard for true answers. It's still an ongoing battle, but I know better where I stand now.
Most of my family and friends know I've been chronically ill for the past sixteen years. What some might not realize is just how debilitating this illness is and how difficult it's been to find an accurate diagnosis. I've been told a lot of things through the years. I've been to a lot of places. I've gone through a lot of testing. And I've been through a lot of trial and error; so very up and down. It's been complicated, overwhelming, frustrating, draining, and disheartening.
Throughout the years, I've actively searched for the actual cause of this illness, even up until now. I've encountered some of the best and some of the worst that our healthcare system offers. That in itself forced me to change my thinking and make subsequent adjustments. And I thank God for it. For the past year, my doctor and I have pursued what we now believe to be the true root of this illness that has so changed my life and my family's life.
It is with a mixture of relief and reservation that I share this with you. I mean, this is the past sixteen years of my life briefly stuffed into this one tiny blog post. It feels rather peculiar to try and put something so profound as this into a few words. And it's bittersweet, too (if you're chronically ill and searching for answers, you know exactly what I mean). Honestly, I have wrestled with writing this, but I’ve earnestly felt the Lord nudging me to do this, so here it is.
I have chronic Lyme disease.
This implies I have had Lyme disease for a long time, and it's true. Longer than anyone really knew. I was misdiagnosed many years with MS and Chronic Fatigue Syndrome. But before that, some doctors found that I had several chronic viral and bacterial infections (EBV, CMV, VZV, Strep, etc.). Before that, I had been diagnosed with Post-Viral Demyelinating Syndrome, Chronic Mono, Transverse Myelitis, Primary Lateral Sclerosis, Vestibular Neuronitis, Optic Neuritis, and Migraine Variants secondary to MS, among other things.
All along, however, it's really been Lyme disease and secondary infections.
Yes, it's left my head spinning too.
Lyme disease is called "The Great Imitator" because it can mimic many other diseases, leading to improper and delayed diagnosis. This is what’s happened to me, and it happens to many others as well. It is a very complex, multi-systemic infectious disease that is caused by the bacteria, Borrelia burgdorferi. When left untreated, Lyme can and will disseminate throughout the body and cause significant problems—so it's been with me.
As many of you who live with chronic illness surely know, my story isn't simple. I couldn't possibly address the myriad struggles that have occurred. I want to share some of the invisible aspects of my illness, which is what Invisible Illness Week is really all about - bringing awareness to the fact that much of the suffering of chronic illness and/or pain isn't always visible to others.
Let me first say the most tangible and visible aspect of this illness is clearly my wheelchair. But what a lot of people don't really know is why I am in a wheelchair. And that brings me to some of the not-so-visible parts of this illness.
Chronic Lyme disease has greatly affected me neurologically, commonly called Neuro-Lyme or Late Stage Lyme Disease. I have weakness in my legs, which really stems from inflammation and damage to my nervous system. But you can't "see" that. I've had many problems with neuropathies, paresthesias, balance, disequilibrium, and gait. These are the primary reasons I've been in a wheelchair for thirteen years.
But there's more to this illness. Deeply profound chronic fatigue. Recurrent low-grade fevers. Muscle and joint pain. Chronic sore throats. Headaches. Light Sensitivity. And on and on it goes; so much is involved. I really can't express how debilitating the fatigue and fevers are on many days; it's so very draining. My immune system has been damaged as well. Co-infections and secondary infections are common in chronic Lyme because of this, so it is for me. The bacteria that causes Lyme has also affected my heart, liver, and spleen. You can't tangibly see much of that, either.
What can be seen are the effects of it, but they're not always recognized, and while this might all seem random in how my physical body has been affected, it is the very essence of chronic Lyme disease. It has answered many of the plaguing questions we've had about the complexity of this debilitating illness throughout the years.
For me, the good news is in finally knowing what I'm dealing with. I can't tell you how frustrating it is to not know what's really going on when something clearly is. And after so long, you just want answers, no matter what they are.
I recently began a treatment protocol for CLD. So this is all very fresh and emotional. I didn't just settle for the possible or probable. Instead, I've prayed and fought long and hard for true answers. It's still an ongoing battle, but I know better where I stand now.
I will say that living with chronic illness is akin to experiencing, as the old Crowded House song goes, four seasons in one day—it's that overwhelming a lot of times.
As I close, I must say that my faith in Jesus plays a huge role in my life and, therefore, in this illness as well. I cannot separate my faith from any aspect of living, including Lyme disease. My relationship with Jesus is what has ultimately sustained and preserved me. And I must also tell you that I've come to know Him in a much deeper and more personal way through all of this crazy mess.
The love and support of my family, close friends, doctors, and therapists have been a tremendous blessing. There's no doubt about it; you must have tangible, present help when chronically ill.
To my dear Mom—thank you from the bottom of my heart for all you've done for me over the years!!
Throughout all of these long and difficult years, she has been my caregiver and cheerleader, and I cannot possibly express the depth and impact her ongoing love and support have made on me. I really don't know where I'd be without her.
Although this is a really hard and lonely journey that is so often misunderstood, and although physical healing has not yet come for me, I truly believe something will be birthed out of this pain and suffering, which is why I often refer to it as “a beautiful mess.” In some small way, it already has, but I do believe there's more to come.
In the meantime, I’d truly be honored if you follow along with me on this Lyme journey. Oh, and welcome to My Lyme Symphony, where I’ll be writing and documenting this whole process.
Stay tuned, friends.
Michelle
Immune Recovery Clinic
Atlanta - 2003
Michelle Holderman
Copyright ©2010
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