*I wrote this back in July 2015. But all is still relevant, if not more so. When there are over 300,000+ new cases of Lyme a year across our nation, why aren’t the CDC and IDSA doing so much more for the population at large? And why aren’t these organizations being held more accountable for their actions or lack of actions. #LYMELIESCOSTLIVES
Hi out there! Today I listened to the Diane Rehm show and if you caught it as well, it was a program about Lyme disease. Honestly, it didn’t shed any light on the disease for me personally and yet again, some of the guests continued to perpetuate some of the Lyme disease myths floating around. Now granted, I am not a scientist, I am not a researcher, and I am not a doctor. But I am one of the many suffering from this disease so I have read as much information as I can get my hands on about Lyme and I will continue to do so. At this point in my game of Lyme, I feel like I know enough to make fairly decent decisions regarding my own care.
Listening to the program and reading comments on Rehm’s FB page really struck a chord with me in that there are so many people out there suffering from the elusive Lyme bacteria, Borrelia burgdorferi (B. burgdorferi). And so many of us are not even close to getting the help we need. The medical community is at odds as to what to call the condition where patients suffer symptoms of Lyme after treatment; it is also at odds with whether the bacteria is actually present after treatment or not. On the show, Dr. John Aucott from Johns Hopkins Bayview Medical Center basically agree that yes, in rare cases, patients still suffer from symptoms after treatment but he would not call it Chronic Lyme. He sidestepped this so many times…well anyway. Instead, he made it clear that if, and only rarely, patients have lingering issues, it is due to an immune response but not due to persistent bacterial infection. He stated this as a fact when in reality, this has not been proven as not true in a human subject.
**The two awesome posters above are from a wonderful website and patient advocavy.Please visit http://www.lymestats.org
But how do we even know or how can we even begin to dismiss the idea that this bacteria, one of the most, if not the most, complex and intelligent bacteria we know of, cannot persist? Just because we do not have the means or the way to find out should not lead then to dismissal. I think back to things in the past that were dismissed and then later, after the technology and testing and imaging came to pass, after the WAY to see something became clear, we changed our minds because we actually had the TOOLS to figure it out? Now I am not necessarily trying to make direct analogies here but think about this: women used to be treated as mentally ill if they suffered certain symptoms after delivering a child. Ever read “The Yellow Wallpaper” by Charlotte Perkins Gillman? But then as years went on and doctors focused and researched, this “condition” turned out to be a physical one and not merely a “mental” condition we now call postpartum depression. The same comparison be said about depression in general. We didn’t know what it was, we know now, we know it can be hereditary….and on and on.
I just cannot then figure out why the medical community, in this country for sure, is so fixated on sticking to standards set by IDSA, the Infectious Disease Society of America, in 2006. Like many of us, I wonder why more money has not been put into finding out so much more about a disease that is now affecting 300,000 plus here in the states? I just cannot wrap my head around it!
I know I live in a bubble, don’t get me wrong. I have yet to have anyone in my life doubt that I am still suffering from something, no matter what the terminology. Not everyone has that kind of support system. Why don’t more medical and science professionals care about Lyme? Or why are they staying away from researching Lyme? Let’s just say that the radio show today did not answer any questions for me. In fact, it only made me think about more questions I have about Lyme disease! On that note, dearies, I must take leave of you.
Until we meet again, peace -B
One of the very first blogs I started to follow 2 years ago when I was just a wee one in the blogosphere was A Opinionated Man by Jason. He continues to inspire and support the blogging community constantly. You need to go and check out his blog! It is great! Recently, he graciously allowed me to do a post about my ideas about home for his July Project H.
If you’d like to hear a bit more about me, then just head on over to Project H – Shout Out from South Texas…
And for your viewing pleasure:
Sorry for the radio silence. I’ve had about 3 weeks of severe fatigue. When I haven’t been working (or haven’t been able to work), I’ve been mostly in bed or at doctor appointments. Yesterday and today were the best days I’ve experienced in more than a month. So this is short and sweet. I promise to do a real post very soon. Thanks for sticking around. I’m hoping all is well in your world.
Be good. – B
These past 3 weeks have been kind of a blur. Week before last, I had severe nausea. No vomiting. But let me tell you, the nausea kicked my butt. I missed a couple of days of work, and it was a huge pain to get into my doctor’s office. I saw her PA and he prescribed me an anti-nausea medication along with Tama -Flu. He told me that most likely I had picked up a bug. And since I am a teacher, this seemed plausible. Except for the fact that my left elbow has been hurting daily, my left knee has been hurting, and there’s the nausea to top it all off.
I took all of my meds as instructed. Then last week, I caught a cold, I guess. Luckily, I already had an appointment with my doctor that I had made months in advance and forgot to cancel. This time I had all of the above plus lower back pain and the incessant cough. After xrays for my back and a check-up, I was diagnosed with Bronchitis which I do get occassionlly. I was sent home with antibiotics and a day off from work. Before I left the office, my doctor ran a CBC as well as a Lyme test. She does this almost every 3 months to see what if anything is showing up. You can check out more information about Lyme disease testing here.
Honestly, I didn’t think twice about the bloodwork since it is done so regularly and most of the time, not much changes. This time, however, I am a winner of the Lyme contest! I tested 100% CDC positive for Lyme. Again. I have not had this result since I tested almost 3 years ago to the day when I was first diagnosed. Yet, this is not a new infection. In fact, this is the SAME infection as I have had for several years now!
I am sure this is why I have felt yucky these past few weeks with no relief.
My guess is that since I was taken off of the antibiotics in November, the bacteria have now come out to play. Oh, Borrelia burgdorferi, you are definitely a worthy opponent! See, this bacteria is very smart. It can and will leave the bloodstream to hide in tissues, joints, muscles, brain, nerves. Anywhere it can burrow to be out of harm’s way. It can also build cysts around itself for defense. Anyway, NOW WHAT? My doctor put me on a Z pack. But that is only for 5 days. What am I doing about this for the next 3 weeks until I see her again and my other doctor out of town? As you can see, I’m a little freaked out about it all. I have a call into my doctor to check on this treatment protocol and in the meantime, I am going to see a Rheumatologist who supposedly treats Lyme. We’ll see.
All I know is I have to keep trying whatever I can to get rid of this infection. It has reared its ugly head at a time I thought I could move beyond traditional medicine to treat and boost my immune system. But it has proven me wrong for now. I hope all is well in Bloggerland. Take care and make sure you always assume ticks are out there whever you live!
Peace – B
Yeah, so this is me right now. Up and down, up and down. Normally, I’m a very steady personality. I do not anger easily. I’m good under pressure and stress doesn’t phase me for the most part. Now, enter Lyme. Neuro-Lyme, specifically. Can someone just say, Stop the Madness?!?
And we’re off! When I was first diagnosed with Lyme disease almost 3 years ago, my major cognitive symptoms were short term memory loss, word recall, concentration (I had NONE), and trouble reading. All of those have improved over the course of treatment. If I am experiencing intense fatigue or stress, they all will rear their ugly heads. Monsters from the deep, I like to call them!
But probably for the past six to nine months, and uhm, this would be way more if you were to ask my hubby, I have experienced these weird mood swings. I guess they can be comparably to PMS mood swings and yet. Along with the mood swings, sometimes, anxiety comes out to play as well. I honestly can say I have never had anxiety except for maybe right before a huge exam or before speaking in front of a crowd. And I never called these feelings “anxiety.” I just called them stress. When I say mood swings, I mean like minute to minute mood swings. Yes, sometimes the mood swings can take a few hours but then sometimes, not so much. From the outside looking in, these swings really can be “crazy.” Anyone else have this or had these in the past?
Example. We go to lunch. Everything is ok. We have a nice lunch, and we have cordial conversation. LOL. Then, afterwards, hubs wants to change the oil in my car so we have to go to another small town about 20 minutes away to get the oil. Yes, the joy of living in the country. Hubs asks me with all seriousness, “Are you going to be alright if we make this detour on the way home?” He means can I handle it energy-wise and mood-wise. Well, of course I can!
I’m good. We shop. I look at decorations. I look at shiny stuff. Then, I start getting tired. It hasn’t been a long time from when I first made the decision to go along with the oil shopping trip either. Really, in non-Lyme time, it has only been about 20 minutes. I’m getting overloaded with stimulus and decision making – I’m trying to find some decorative tins for baked goods. There are a lot of people, a lot of talking, a lot of music. My head starts to feel foggy. By the time we check out, I’m done (and this is less than an hour trip mind you). Some strange time warp happens, and I start acting like a 2 year old who needs her nap. My husband is confused by my behavior, as am I. On the way home – a whole 15 minutes – he’s like, “Hey, I thought you said you would be alright?” Sure thing. Me too! I made a point that I never used to be this way, mood changing faster than the weather, and he agreed.
Overall, yes, the neuro-symptoms are improving but I’m still having these mood swings. Happy one minute, bummed the next. Upbeat and positive, then solemn grumpy pants. Pepper in some anxiety, and presto! Inner Gremlin appears!
So, how many of you suffer mood swings and/or other neuro-Lyme symptoms? And how do you manage these?
Until we meet again……Peace, B
I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.
An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.
Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.
It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.
Everything about me seems more vague than it ever was before. Lyme has seeped its way into my neurological system, into my brain. Weaving itself into my memories, my thoughts, my ideas, my authenticity, I can’t navigate my way through any of it. I keep telling myself that my foundation, the true me is there, stable, indestructible, unwavering, and most of the time, I feel that this is true. But there are the other times. The times where I struggle to find my way back to Me, to the inside world. Lyme chips away at short-term memory. It can produce “‘a microedema, or swelling in the brain,’ says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS)…”
Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience. “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.
How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?
Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.
Take care Warriors.
Until next time – B
**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.
I find it interesting when people say, “I’m not going to let this or this define me.” I mean I understand the literal and also the deeper meaning, but I’m always curious as to why it needs to be stated at all. My guess is because as humans we are already predisposed to discriminating and organizing pretty much everything and anything we encounter. We want to be able to have control over things, however illusory that control is. And defining and categorizing helps us create the illusion. The illusion of control.
So we look at people and we begin the never-ending calculations in trying to “know” someone as well as trying to figure ourselves out. We see ourselves as separate entities, as individuals.
Anyway, back to the identity issue. I guess I started thinking about it when I came across a post or rather several in a Lyme forum. “I will not let Lyme define me” someones wrote. And while I agree, I don’t want Lyme to”define” me either, it is still, at least right now, a huge part of my life. Oh, yes, do I ever want control over it though! But just saying something doesn’t define me doesn’t mean it doesn’t define me in other people’s or even in my own mind. I mean when we get down to it is there anything that really clearly defines us from one another as humans/people? I argue no.
Anyway, I realize this is all kinda philosophical mumbo jumbo but the brain keeps itself busy when the body is broken. Well, at least now that the fog and the mental confusion have improved in my brain area.
Wasn’t it Walt Whitman who wrote, “I sing the body electric”? he goes on, ” Was it doubted that those who corrupt their own bodies conceal themselves? / And if those who defile the living are as bad as they who defile the dead? / And if the body does not do fully as much as the soul?/And if the body were not the soul, what is the soul?”
Some beautiful words to ponder about who we are and how we figure ourselves and others out, or at least try to. Check out Whitman’s complete poem, “I Sing the Body Electric”, at http://www.poetryfoundation.org.
Wishing you a wonderful pain free day. Peace, B
One thing that I think all of us experience as Chronic Lyme patients is the comings and goings of many different symptoms. Oh, yes, there are some symptoms that stay with us loyally, never leaving our sides. But then there are those symptoms that show up off and on like fair weather friends. You know the ones. For me, my Lyme best actors are joint pain, headaches of some degree, and muscle aches. Best supporting actors? Nausea, dizziness, achiness, joint pain in other joints, well, I could go on. For me, the hardest thing about all of these is how they can come and go so quickly. I have tried to find rhyme or reason for this but there really doesn’t seem to be anything that is a consistent trigger, at least for me, other than overdoing in some way (physically and/or emotionally) the day before.
Sometimes, I can go for half a day with just some joint pain and a nagging headache. This isn’t bad at all! Then, BAM. Full blown horrendous flu-like symptoms. I have to get to a place to lay down, shut out the light, try and think about happy moments in my life because my head feels like it is hitting a wall. My stomach cramps up and the nausea is overwhelming. This is what I like to call the main event. It can last for minutes, hours or days. How does one plan for anything with these kinds of things happening seemingly out of thin air?
Like you all, I try to plan ahead. I hope and pray that on the day of a planned out, party, dinner, etc. that I will be feeling “good” and that I can attend. More than many times, I have had to cancel plans. I have even tried resting the day before but again, it doesn’t seem to effect the next day’s outcome at all. It’s upsetting, frustrating and most of all disappointing. Staying at home in bed is not my idea of a good time.
So for an example, my husband and I were out yesterday, picking up some items for our garden beds. Actually, it was nice being out and about, looking at all of the beautiful plants and flowers. I guess we were there about 40 minutes. By the time we left, my head was beginning to play its tune; it was time to go home. Once home, I had what felt like a flu. A strong headache, stomach nausea and indigestion and stomach cramping. I spent the rest of the afternoon in bed, nursing my symptoms as best I could.
Today, I was able to work a bit outside earlier in the morning. Feeling the cool breeze on my face and the sun on my back was pure joy. The dogs kept us company while my husband and I pulled weeds and cleaned up the garden area. My husband, a very sweet man, said, “I’m glad you are out here.” I was glad to be out moving about, too. One day at a time and sometimes, one moment at a time.
Happy Easter, friends. Don’t forget to take The Lyme Disease Challenge if you haven’t already! 🙂 -B