The Pandora Lyme Box

*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!

SOURCE: http://nocturny.deviantart.com/art/Pandora-s-box-340317104
SOURCE: http://nocturny.deviantart.com/art/Pandora-s-box-340317104

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

Just ACT Normal

So for about the past monthish, I’ve been struggling with both fatigue and a weird rash that popped up on my face and arms. Let’s just say it wasn’t fun. But, I’m back on track, the rash is gone, the fatigue hangs in, and we are moving forward into our last week of school.

Being chronically ill with Lyme disease or chronically ill with any other disease means figuring out what one and do and not do on any given day. And while working full-time, my routine is basically, go to work, come home eat and rest. Weekends are for resting. This spring, I have missed several functions due to feeling terrible. You know, like baby showers, dinners, birthday celebrations, hanging out with friends and family. Looking back on this past spring, I think I have  been at a real function maybe 3 times? Now, don’t get me wrong, I am in no way a social butterfly. But still. I definitely try not to feel guilty when I have to cancel, and I try to be good to myself, especially when I feel depressed about having such a restricted lifestyle.

While honesty is the best policy, sometimes it just works better to try and put on the Normal Act. Recently, I was able to attend a celebration. Overall, it was really nice. I also was able to see friends and family that I haven’t seen in quite awhile, so that made it even more awesome. Here’s the thing though, it wore me out. When I get into situations like these (and again, it isn’t very often), I do feel stressed out. Sometimes just talking can be an absolute chore and/or nightmare. And while yes, I am a teacher, and I have to talk a lot in my position, well, it’s hard to explain, but it is different. Worst case, as a teacher, I can wing it because I have experience. Yes, I do have conversations with my students as well, but most of the time his happens, it is usually just one on one without a ton of extra stimulus. It is easier to “act” normal and to be in control of the situation. Not so much at a party.

Sometimes, in a social situation like a party, or something involving many people, I really do my best to “act” normal, to put on the public mask. But it is damn hard. It takes a lot of work. The noise level, the meeting of people, the small talk, the picture taking. Wow. It just overwhelms me. I guess this is due to the neuropyschiatric symptoms of Lyme. One of my strategies to dealing with this kind of thing is I try to switch to auto-pilot. I try not to think too hard. I try to speak in simple sentences. Really, not speaking is the best.While at said party, I forgot someone’s name that I have known for quite a long time, I switched up words, I forgot words. And as my body and brain became more tired, the worse it became.

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However, people can be so very kind. They want to talk to me about how I am doing, how is the treatment, am I making progress, etc. I do indeed appreciate it all. But it can cause a bit of anxiety for me as well. I think it is my cognitive wires getting crossed. So some things that came at me the other day: Have you tried ***treatment?, You look great, you must be feeling better!, Mental health is 50% of overall health, and more. Of course, I want to engage in conversation, I want to interact with others. Yet, this alone takes so much energy. It all just wore me out.

 

On a positive note though, like I said the party was fun, and I was able to rest all day yesterday. I hope you all are enjoying this Memorial Day.

Namaste – Belle

The Lyme and Stomach Tango

This past week hasn’t been much fun. On the positive side of it, I am having way less fatigue and exhaustion and the nausea has simmered a bit. This makes me happy. I try to center on the upside of this. But what I have learned about Lyme and its multifaceted myriad of delights is that when one thing comes under control or subsides, well, just wait; there is another wondrous ailment that will pop up. So it goes.

Today, I am missing work again. The allotted and bank of sick days is quickly coming to a zero quantity and even with the leave days added in the fall for the next school year (I am in no way complaining as it is a generous addition), I will be hard pressed to not use them all and more if things continue as they are at present. This worry must go on the back burner for now though. 

Though the nausea has subsided to a minimal issue, and I have some meds to help curtail it, instead, I am now having some serious indigestion. It happens a good 3-5 hours after eating, no matter what I eat. For the past 8 nights, the indigestion has been so terrible that it has made me wake out of a dead sleep, usually about 1-3 a.m. Am I getting desperate for relief? Yo buddy, for sure.

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                             Image via  Tango Santa Maria – Gotan Project – YouTube

What are some things I have tried to do to alleviate this? I’m on a gluten free diet for the most part. I eat dinner early in the evening, and I eat smaller portions. I take my supplements and herbal tinctures throughout the day; I try to spread them out. I take a good probiotic and my LLMD has me on Nystatin, an anti-fungal. I drink a solid gallon of lemon water daily and a few cops of green tea in between. No sodas and just one cup of coffee in the morning. Alka-slezer Gold is a good friend of mine and can help minimize the indigestion for a bit. I’ve also added charcoal tablets after doing research. These can help but they cannot be taken infinitely. The meds for the nausea really don’t help with indigestion. Whole different animal, I guess.

Here’s where I am today: no food as of yet. I am presently drinking green tea with some sliced fresh ginger. Water consumption is also happening. Report? No indigestion, but tummy is unsettled and my damn head hurts. Plan for the rest of the day? Maybe try and eat some plain scrambled eggs and/or have some plain chicken broth. Then, see what happens. 

Going to the doctor is not a realistic step right now. If it gets worse, or if I can’t eat at all, then I will definitely go. It’s just so difficult to try and get in to see my LLMD here without a prior appointment. Ridiculous really. In February, when I was so sick with nausea and fatigue, I called and they told me the wait was 2 weeks to see my doctor. When I pushed them and also emailed my doctor directly, I finally was able to squeeze in a few days later. I saw doc’s PA who is a seriously an awesome person, but PA diagnosed me with the flu (I did not have the flu) and I ended up back in the office 2 weeks later. Needless to say, it wasn’t very productive on top of my feeling like total crap. 

I’ve been doing a lot of research this week on the Gut and Lyme. I realize that I am probably going to have to clean up my diet even more. After almost 3 years on antibiotics, I am sure my stomach is affected. Perhaps there is residual damage as well? I have been totally off of antibiotics since November, but I am sure that getting my tummy back to “normal” is going to take some time and serious dedication. Also, trial and error. While I did well on abx in that I did not end up with a Candida infection nor C-Diff, I really have a feeling that some of the issues I am experiencing now are due to the extended use of the abx. 

Ok, friends, I am off to make some more ginger tea and do some resting. Namaste. -B

 

Winner, Winner!

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.

Winner-2-copy

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

 

 

A Rallying Cry

When first diagnosed with Lyme disease, and after learning more about it, my attitude (if indeed I had one; I was extremely sick) was one of “OK, I got this.”

When my doctor said that most likely Lyme had been in my system for awhile, perhaps 10-20 years before it wore me completely  down, and that it might take awhile before I would start feeling better, I thought “OK, I got this.”

300RallyCry

When I passed the year mark of being in treatment, and I was not feeling much better, I still believed, “OK, I got this.”

Now, after almost 3 years of treatment, after endless months of medications and supplements, after having a PICC line, after thinking at times when I have been so very ill that I might die, or that I want to die to get some relief from these symptoms, after giving up so many things (activities, trips, relationships), I still know in my heart that  “I GOT THIS.”

Do you have a rallying cry or something you can tell yourself when things get tough? Please share!

Peace – B     P.S. I had to add the other 2 photos for sure 🙂

BraveheartRallyCry

Concentration is the Name of the Game

Are my people counting down the days until Christmas? Did you make those brown paper bag reindeer with the colored paper rings to keep track of each day until…? If you celebrate Christmas, well, Happy Christmas! And if you don’t, then Happy ——! We celebrate everything here. Why not? Life is so short. So only six days, my pretties.

Today, I want to explore the topic of Lyme and concentration. Or the lack of this skill, really. While I have never been a huge fan of multitasking – I think this word means doing a lot of things with less quality – I never struggled all that much to do it. In the past, working as a bartender, a waitress, a food and beverage manager, the skill of multitasking has served me well (no pun intended). As a teacher now, juggling 100 different things at the same time? No problem. B.L. though. Before Lyme. No Problem.

focus-and-concentration

Until Lyme. A.F.? After Lyme? Multitasking? Surely, you jest! Holding more than one thought in my head at any given moment? Impossible. Seriously. When I was first diagnosed about 3 years ago, I could barely even read anything over a paragraph long. For one, I had headaches or one headache, non-stop. Two, I could not follow a train of thought that lasted more than 4-5 sentences on paper. This also applied to listening to thoughts/conversations. The more I tried to concentrate, the harder it seemed to understand. It is difficult to explain. Some people call this brain fog. And while that is good description, it is also like being stuck in quicksand ( in real life, this has never happened to me but I’ve always been told I have a vivid imagination). So like quicksand, a thought would come into my brain and the more I tried to sort it out, extend it, apply it, the more it became unreachable in my mind.

And while I am using past tense verbs to describe this issue, this symptom does return periodically. I’ve noticed it becomes more amplified in several instances, such as when I am trying to get work completed on a deadline, when I am fatigued, when I am stressed, and when there is too much stimuli in my environment. It is the same exact way I used to feel in my twenties when I was busy  with work and college and sleep was a nap here and there. Just no concentration skills.

I guess I am thinking about this because of the holidays, the end of the semester, the stress, the lack of concentration, the brain fog, the quicksand, it’s all back and with a vengeance. But, these past few weeks at work have been nonstop kinda crazy. Finals for the community college, grades calculated, grades entered, students exempting or not exempting, students with grade issues, passing rates, plans for January, syllabus organizing and writing, end of the grading period, end of the semester, final exams, grading said final exams, and etc.! My colleagues are also feeling a little crazy so I am chalking up my exacerbated issues to the end of the semester shenanigans. To counteract my brain’s lack of focus, I like to sit in a dark room with absolutely no stimuli. This seems to help a bit.

Have you ever had these symptoms? Do you find it difficult to concentrate? How do you deal with it?

Hoping your Saturday is filled with good stuff – B

 

 

Proceed with Caution!

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?!?

rollercoaster1  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

P.S. This site has some solid information regarding neurological symptoms and Lyme.  www.neuro-lyme.com

 

 

 

Warm, Warm, Cold!

It was 80 degrees here yesterday, a/c on, hair frizzies and such abounded. Today? Why, it is 46 degrees! Getting up was tough. It was a 3 hour process. We woke up at 5 a.m. Hub’s alarm went off; he was taking the kids to an outside event today. I had to give one of my dog’s his medicine. I switched the a/c to heat and then jumped back into bed and turned on the electric blanket. AAH. But lights were on, and activity was happening, the dogs were restless. Almost falling back to sleep, Boo woke me up trying to play. About 6 a.m., I gave in and got up, made coffee, crawled back into bed and watched a little Netflix with the free tv juice (satellite) until 8 a.m. I just couldn’t coax myself out of the cozy, warm bed.

Everything is sore for the most part. It’s the damp that is getting me. When the front came in last night it rained, the damp sleathly crept into the stillness of my bones. Hips, lower back, ankles….these are the places the cold likes to settle. My BFF in the winter is a heating pad. I seriously have about 5 of them pretty much everywhere! School, couch, bed, office chair. I really need to get a heated car seat! Maybe Santa can check that out for me.

It’s been a good week. I’ve done more this week than I have in the past 2 months, or at least it feels that way. For the most part, my energy has been decent, and my mood has been a positive one. One thing I have realized this break is that I’ve become overly cautious. What I mean is this: I never know how I will feel after doing something out of the ordinary in my daily routine, whether that is an extra hour at work, taking on a project, going out to dinner, etc. With this in mind, I go about my every day doing the known routine and scared to do anything outside of this routine because I don’t know what the result will be. I know this sounds a little crazy, and it kind of is, but my worry is that if I break my regular routine and overdo, I may be paying for it longer that I want to or can afford to financially and otherwise. So, I err on the side of doing less.

The result of playing it ultra safe has been that I have sacrificed some of myself and my relationships with others. It is true. And this does hurt. It’s just really hard to figure out a balance as far as my energy tank  is concerned so there isn’t a terrible backlash. I’m not sure how to navigate this new found obstacle I am now aware of.

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In perspective though, I am grateful that I have energy to worry about doling out.  This is a definite sign of improvement and I’ll take it. Any tricks or tips you can share about managing your energy account?

I hope you all have had a good, pain free week. Until next time, stay frosty – B

My Life is Fleeting One

Hello people, it’s been a long while. And as we all say, so much has happened and yet nothing at all has happened. First, maybe, is that indeed, I have made it to Thanksgiving break at work. This is a huge hurdle for me, and I am very grateful to have cleared it, circa 2015, with all limbs intact. There were about 3 weeks there in late September that I honestly thought I would not be able to make it, and I would have to take a medical leave; I was really worried that I was getting worse. Then, things turned around, albeit slowly. I’ve finally come to terms with the fact that living with a chronic disease, things can change on a dime and they do. Although I am not a fan of this at all, accepting this as a reality has been somewhat helpful along my journey into the unknown.

Seeing another doctor has also happened. We made a 3-4 hour trip from home to the new doctor’s office a few weeks ago. The visit was a long one in which I talked too much, my husband reported to me afterwards, and we left with a few bottles of tinctures. Personally, I like this doctor, the approach to treating Lyme through more integrated and functional medicine, the way the doctor listened and validated mine and my husband’s experiences over the past 2 and a half years of treatment. I have stopped the abx and switched over to the herbal drops. The goal is to get to 25 drops 2 times daily. Right now, I’m struggling with 5 drops 2 times a day. I can do 4 and make it alright. But the past couple of days when I tried to get to the level 5, by about 4 p.m. I am herxing big time. I also have detox drops for the herxing, and I have added those as needed, but wow, there is s distinct difference, at least for my body, between the 4 – 5 drops. We are working on it. 🙂

I hope everyone has a wonderful Thanksgiving! This break I’ve been able to do a few things I normally can’t / don’t do while working such as, and don’t laugh: grocery shopping, house cleaning, pie baking, dinner out, laundry – lots! While most of these things are not huge in any way, I have just not had the energy to do them much while working. And I actually did some simple Christmas decorating! It really has been pretty awesome getting to do these things without feeling so fatigued and overwhelmed. While several of these afternoons and evenings I have been in bed with nausea and headaches, I still feel like I’ve had some of the best days I’ve had in a very long time. I know I have pushed myself a little much, and I’ve eaten several slices of pie, pumpkin and apple, so my sugar intake is in the red, but it’s all been worth it! I feel like I have been partying it up, people!

Best wishes to you and to yours, -B

First Aid Kit

P.S. The above band is worth checking out. This song, “Fleeting One” is stuck in my head. Enjoy!