Perhaps I should say welcome to the truth about Lyme disease as I see it. I've wanted to write this so many times I've lost count, and I have struggled with doing so for many reasons. First off, it's a huge undertaking. The truth of Lyme disease is no small thing, nor is it for the faint of heart. Moreover, I don't have the amount of energy I think it takes to do it complete justice. Then again, could any length of writing really do that? Honestly, this could go so many ways. I start to think it might just be better to write this thing freestyle. Whatever comes out, comes out. You know, Que sera, sera. But I don't want to come across in the wrong way either.
Do you see a dilemma forming here?
Having said all that, I think it's better to go for it than leave it all unsaid. I have experienced my share of being misunderstood, so what the heck.
I know and respect that each person's experience is unique. Clearly, there have been many already who've addressed this topic in a variety of ways, probably better than I can. So while this is in no way a comprehensive piece on the truths of Lyme disease; it is from the heart. And the gut. And the funny bone.
I've written about Lyme in myriad ways before, so I'm going to try this from a more distinctive point of view. Perhaps quite different from how I usually write. It might work; it might not. Maybe this whole thing will only make sense to those of us with Lyme, and maybe this won't make any sense period. Nevertheless, here goes.
Lyme disease can be your worst freaking nightmare.
How's that for an introduction?
Lyme, and other tick-borne infections, can be easy to get but difficult to treat. Mainstream medicine tells people the opposite. I'm telling you that thousands of other Lyme sufferers and I can't all be wrong.
When Lyme goes undiagnosed, misdiagnosed, and/or untreated, it only allows the bacteria to spread and entrench itself deeper within tissues and cells. That's why if left unabated over time, the whole body often becomes involved, including major organs like the brain, heart, and liver.
If caught early, it can be treated pretty successfully without complications, however, here's another problem - many people are carrying the Lyme bacteria around in their bodies and don't even know it. That is until their immune system gets taxed by some serious stressor like an infection, surgery, significant life change, loss, death of a loved one, or some other type of physical or emotional trauma. Then it can rear its ugly head seemingly out of nowhere.
For me, it was after having an oral surgery, which later turned into having two more subsequent surgeries due to complications. After having three oral surgeries, two within a year, you bet my immune system was down. I've never felt the same since that initial one; it was the beginning of what later became a 16-year diagnostic nightmare for me. And now, 20 years later, here I am. Still working to heal and recover from what we now know is chronic Lyme disease. Misdiagnosis was a big issue for me. My story is reflective of so many other people's stories, and vice versa.
The truth is, it isn't only about the Lyme bacteria (Borrelia, of which there are various strains) when dealing with a long term or chronic Lyme infection. There are many factors involved, which is why it is more appropriately referred to as the Lyme Disease Complex. Also, other co-infections, immune suppression, systemic inflammation, genetics, methylation, toxicology, trauma, nutritional deficiencies, detoxification, etc., are all critical issues that must be addressed. Furthermore, we each have unique biological makeups, and that means we all respond differently to things, including treatments. There is no one size fits all treatment. I personally believe we each need individualized treatment protocols.
Integrative medicine physician Dr. Isaac Eliaz, MD, MS, LAc, recently wrote an article on Huff Post Healthy Living entitled, The Truth About Treating Lyme Disease. It's a really good piece regarding the truth about the Lyme complex and his holistic overview of what successful treatment must include. He also does a great job of conveying the difficulties of treating this complicated disease complex; it's not so simple. He emphasizes that it takes time (don't we know it). And he also encourages there is always hope for improvement (totally agree). It's worth taking the time to read, especially if you or a loved one has Lyme.
And do you honestly want to know how we feel about Lyme?
We hate it. It makes us want to puke. In fact, some people with Lyme do puke.
On a scale of 1-10 (with one being the worst and ten being the best), most all of us at some point have been at 1 and 2 for months and years. Many of us have made some improvements but are fortunate if we can get to a 5 or 6, even after working long and hard through various treatments. It seriously takes a great deal of time to work through this complex healing process.
Some people are never the same, and some people don't make it.
It feels like living in an ongoing episode of The X-Files. You know, where the truth is out there but is always elusive, suppressed, and concealed. It's where the ones who really know the truth, and are willing to go out on a limb for it, are usually portrayed in a poor light.
Remember Fox "Spooky" Mulder?
Yeah, now he knew the truth. He wasn't crazy; he was sharp, brilliant, actually, and he was a threat because of it. He lost a lot, but he kept on working hard and pursuing what he knew was right, despite having to fight the system and all the players in it; despite getting discouraged at times; despite almost quitting, more than once, I might add.
You see where I'm going with this?
Symbolism is a great tool. Please, don't ever give up, Lyme friends. Let's hold on and keep believing together, okay?
By the way, I've often wondered if those "designer bees" from The X-Files movie, the ones housed in massive domes out in the middle of nowhere amongst all the random corn crops, held the real cure for Lyme.
Uh, huh.
Maybe we should consider starting The L-Files.
Seriously though.
We work our butts off every single day to be well. Or at least work towards some type of improvement on some level, any level.
We're not on some extended hiatus having the time of our lives because we "get to stay home."
Really?!?
Does anyone actually think that?
They must because you'd be shocked at some of the responses many of us have gotten from people. Not all people, but some people. How shall I put this? Some people say the most ridiculous, insensitive things, it's almost comical.
I said almost.
It's not very comical when you're on the receiving end and don't physically feel well or are in a great deal of physical pain. Or when you're so profoundly fatigued, you can hardly breathe, much less move. Or when you've lost so much along the way but nobody can see it; perhaps they don't want to.
The effects of Lyme disease on real lives create tremendous suffering in the body, soul, and spirit.
It hits wallets and checkbooks pretty hard too.
I've said this many times before and have certainly learned it's very true: no one can fully understand the depths of something they've never experienced themselves. This is true of many things in life, including chronic illness. I'm specifically referring to Lyme disease here because that's what I've lived with for so long, and that's what has turned my life entirely upside down like it has so many others.
We're all sicker than anyone really knows or understands. Still, when others ask us how we are, we've learned it's usually a lot easier NOT to go into detail. That's mainly because a lot of people just don't understand. We're not faulting them. As I said, no one can honestly understand this if they've not lived it. But it is less frustrating and draining for us than having to deal with some of the looks, the rhetoric, and the casual, sugarcoated responses we so often get.
Hey people, this is not Candy Land, OK? Or should I say Candy Crush?
Um, yes. We're STILL in treatment. I'm sorry that's hard for you to grasp; try living with it. We know with all the remarkable technology of today, there should be premium testing and perfect treatments available. Maybe in Candy Crush Saga that would exist, perhaps for Tiffi and Odus the Owl, but not in Lyme land. X-Files. Remember?
And yes, it can take years to make headway with this. We deal with it every single day.
Some days we're up, and some days we're down. Other days, however, we park it in the middle and can't budge.
Some days we laugh. Some days we sigh. And some days we just sob our guts out.
Some days we are hurting. Some days we're scared. Some days we're frustrated. Some days we're weary of it. And some days we want to scream our guts out.
Some days we DO scream our guts out, which usually scares the cat, the dog, and/or the neighbors, but hey, it sure makes us feel better.
Some days this is all so absurd and surreal, we just shake our heads. Like a lot. Some days it's so weighty and severe, we don't really know what to do with it. And some days we're so dang sick, fatigued, and debilitated, we can't care about anything else.
Some days we light up. Some days we crank it like a chainsaw. And some days we totally crash.
Some days we long for the life we once had. Some days we dare to dream big for the future. Some days, we feel completely lost and alone in it. And then some days, it feels like this will never end.
Some days we feel like we got the boom. Some days we fall down and go boom. And some days, we feel like the boom done went and left.
Some days we raise the music through the roof and don't want to talk to anybody about anything. As in, Shut up, my favorite song is playing! Some days we can't stop talking about it. Some days we want and need silence. And some days we're so tired of this whole mess, we try and pretend it doesn't exist anymore, but that usually doesn't last very long.
Some days we feel like we can see some light at the end of the tunnel. Some days that light gets brighter. And some days, the light seems to have disappeared.
Some days we express words we didn't even know were buried deep within us. Some days we have no words whatsoever. And some days, we write really long, eccentric blog posts.
Welcome to the truth about Lyme disease.
~ Michelle
PS: No animals, neighbors, or ticks were hurt in the process of writing this truthful but off the wall piece about one of the fastest spreading, most serious infectious diseases today.
Although, I did heavily mix rock, electronica, hip-hop, singer-songwriter, and folk music together during the writing process. AND, I had a homeopathic cocktail chased minutes later by a tall hot green tea. AND, I was texting my nephew about new kicks (not to be confused with new ticks), swimming, and black eyes. Otherwise, nothing eventful took place.
PPS: Take a deep breath.
PPPS: Actually, I wouldn't mind taking out a few punk ticks.
PPPPS: We all share commonalities, but truly, our stories are unique. And your story matters, friend. Don't be afraid to share it. Someone somewhere needs to hear it. Welcome to the truth, indeed.
Do you see a dilemma forming here?
Having said all that, I think it's better to go for it than leave it all unsaid. I have experienced my share of being misunderstood, so what the heck.
I know and respect that each person's experience is unique. Clearly, there have been many already who've addressed this topic in a variety of ways, probably better than I can. So while this is in no way a comprehensive piece on the truths of Lyme disease; it is from the heart. And the gut. And the funny bone.
I've written about Lyme in myriad ways before, so I'm going to try this from a more distinctive point of view. Perhaps quite different from how I usually write. It might work; it might not. Maybe this whole thing will only make sense to those of us with Lyme, and maybe this won't make any sense period. Nevertheless, here goes.
Lyme disease can be your worst freaking nightmare.
How's that for an introduction?
Lyme, and other tick-borne infections, can be easy to get but difficult to treat. Mainstream medicine tells people the opposite. I'm telling you that thousands of other Lyme sufferers and I can't all be wrong.
When Lyme goes undiagnosed, misdiagnosed, and/or untreated, it only allows the bacteria to spread and entrench itself deeper within tissues and cells. That's why if left unabated over time, the whole body often becomes involved, including major organs like the brain, heart, and liver.
If caught early, it can be treated pretty successfully without complications, however, here's another problem - many people are carrying the Lyme bacteria around in their bodies and don't even know it. That is until their immune system gets taxed by some serious stressor like an infection, surgery, significant life change, loss, death of a loved one, or some other type of physical or emotional trauma. Then it can rear its ugly head seemingly out of nowhere.
For me, it was after having an oral surgery, which later turned into having two more subsequent surgeries due to complications. After having three oral surgeries, two within a year, you bet my immune system was down. I've never felt the same since that initial one; it was the beginning of what later became a 16-year diagnostic nightmare for me. And now, 20 years later, here I am. Still working to heal and recover from what we now know is chronic Lyme disease. Misdiagnosis was a big issue for me. My story is reflective of so many other people's stories, and vice versa.
The truth is, it isn't only about the Lyme bacteria (Borrelia, of which there are various strains) when dealing with a long term or chronic Lyme infection. There are many factors involved, which is why it is more appropriately referred to as the Lyme Disease Complex. Also, other co-infections, immune suppression, systemic inflammation, genetics, methylation, toxicology, trauma, nutritional deficiencies, detoxification, etc., are all critical issues that must be addressed. Furthermore, we each have unique biological makeups, and that means we all respond differently to things, including treatments. There is no one size fits all treatment. I personally believe we each need individualized treatment protocols.
Integrative medicine physician Dr. Isaac Eliaz, MD, MS, LAc, recently wrote an article on Huff Post Healthy Living entitled, The Truth About Treating Lyme Disease. It's a really good piece regarding the truth about the Lyme complex and his holistic overview of what successful treatment must include. He also does a great job of conveying the difficulties of treating this complicated disease complex; it's not so simple. He emphasizes that it takes time (don't we know it). And he also encourages there is always hope for improvement (totally agree). It's worth taking the time to read, especially if you or a loved one has Lyme.
We hate it. It makes us want to puke. In fact, some people with Lyme do puke.
On a scale of 1-10 (with one being the worst and ten being the best), most all of us at some point have been at 1 and 2 for months and years. Many of us have made some improvements but are fortunate if we can get to a 5 or 6, even after working long and hard through various treatments. It seriously takes a great deal of time to work through this complex healing process.
Some people are never the same, and some people don't make it.
It feels like living in an ongoing episode of The X-Files. You know, where the truth is out there but is always elusive, suppressed, and concealed. It's where the ones who really know the truth, and are willing to go out on a limb for it, are usually portrayed in a poor light.
Remember Fox "Spooky" Mulder?
Yeah, now he knew the truth. He wasn't crazy; he was sharp, brilliant, actually, and he was a threat because of it. He lost a lot, but he kept on working hard and pursuing what he knew was right, despite having to fight the system and all the players in it; despite getting discouraged at times; despite almost quitting, more than once, I might add.
You see where I'm going with this?
Symbolism is a great tool. Please, don't ever give up, Lyme friends. Let's hold on and keep believing together, okay?
By the way, I've often wondered if those "designer bees" from The X-Files movie, the ones housed in massive domes out in the middle of nowhere amongst all the random corn crops, held the real cure for Lyme.
Uh, huh.
Maybe we should consider starting The L-Files.
Seriously though.
We work our butts off every single day to be well. Or at least work towards some type of improvement on some level, any level.
We're not on some extended hiatus having the time of our lives because we "get to stay home."
Really?!?
Does anyone actually think that?
They must because you'd be shocked at some of the responses many of us have gotten from people. Not all people, but some people. How shall I put this? Some people say the most ridiculous, insensitive things, it's almost comical.
I said almost.
It's not very comical when you're on the receiving end and don't physically feel well or are in a great deal of physical pain. Or when you're so profoundly fatigued, you can hardly breathe, much less move. Or when you've lost so much along the way but nobody can see it; perhaps they don't want to.
The effects of Lyme disease on real lives create tremendous suffering in the body, soul, and spirit.
It hits wallets and checkbooks pretty hard too.
I've said this many times before and have certainly learned it's very true: no one can fully understand the depths of something they've never experienced themselves. This is true of many things in life, including chronic illness. I'm specifically referring to Lyme disease here because that's what I've lived with for so long, and that's what has turned my life entirely upside down like it has so many others.
We're all sicker than anyone really knows or understands. Still, when others ask us how we are, we've learned it's usually a lot easier NOT to go into detail. That's mainly because a lot of people just don't understand. We're not faulting them. As I said, no one can honestly understand this if they've not lived it. But it is less frustrating and draining for us than having to deal with some of the looks, the rhetoric, and the casual, sugarcoated responses we so often get.
Hey people, this is not Candy Land, OK? Or should I say Candy Crush?
Um, yes. We're STILL in treatment. I'm sorry that's hard for you to grasp; try living with it. We know with all the remarkable technology of today, there should be premium testing and perfect treatments available. Maybe in Candy Crush Saga that would exist, perhaps for Tiffi and Odus the Owl, but not in Lyme land. X-Files. Remember?
And yes, it can take years to make headway with this. We deal with it every single day.
Some days we're up, and some days we're down. Other days, however, we park it in the middle and can't budge.
Some days we laugh. Some days we sigh. And some days we just sob our guts out.
Some days we are hurting. Some days we're scared. Some days we're frustrated. Some days we're weary of it. And some days we want to scream our guts out.
Some days we DO scream our guts out, which usually scares the cat, the dog, and/or the neighbors, but hey, it sure makes us feel better.
Some days this is all so absurd and surreal, we just shake our heads. Like a lot. Some days it's so weighty and severe, we don't really know what to do with it. And some days we're so dang sick, fatigued, and debilitated, we can't care about anything else.
Some days we light up. Some days we crank it like a chainsaw. And some days we totally crash.
Some days we long for the life we once had. Some days we dare to dream big for the future. Some days, we feel completely lost and alone in it. And then some days, it feels like this will never end.
Some days we feel like we got the boom. Some days we fall down and go boom. And some days, we feel like the boom done went and left.
Some days we raise the music through the roof and don't want to talk to anybody about anything. As in, Shut up, my favorite song is playing! Some days we can't stop talking about it. Some days we want and need silence. And some days we're so tired of this whole mess, we try and pretend it doesn't exist anymore, but that usually doesn't last very long.
Some days we feel like we can see some light at the end of the tunnel. Some days that light gets brighter. And some days, the light seems to have disappeared.
Some days we express words we didn't even know were buried deep within us. Some days we have no words whatsoever. And some days, we write really long, eccentric blog posts.
Welcome to the truth about Lyme disease.
~ Michelle
PS: No animals, neighbors, or ticks were hurt in the process of writing this truthful but off the wall piece about one of the fastest spreading, most serious infectious diseases today.
Although, I did heavily mix rock, electronica, hip-hop, singer-songwriter, and folk music together during the writing process. AND, I had a homeopathic cocktail chased minutes later by a tall hot green tea. AND, I was texting my nephew about new kicks (not to be confused with new ticks), swimming, and black eyes. Otherwise, nothing eventful took place.
PPS: Take a deep breath.
PPPS: Actually, I wouldn't mind taking out a few punk ticks.
PPPPS: We all share commonalities, but truly, our stories are unique. And your story matters, friend. Don't be afraid to share it. Someone somewhere needs to hear it. Welcome to the truth, indeed.
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