Over the summer, I’ve felt like my cognitive issues or the neuro Lyme, have improved. In June, my LLMD here in town (I have another doc out of town) started me on a supplement, ATP Fuel. Since being diagnosed with Lyme disease in March 2013, severe fatigue has been one of my major, and quite consistent soul crusher, er, I mean symptom.
It’s continued to be a lingering symptom. Now, when I say fatigue, or severe fatigue, I don’t mean “tired.” There is a chasm of difference, one I never understood anywhere near well enough BLD ( Before Lyme Disease).
You know what makes me “tired”? Staying up too late, doing too many activities, physically or mentally exerting myself ( this excludes Pokemon Go).
But fatigue? A whole other ball game, my friends. Being “tired” means you need sleep so you sleep and wah lah! You wake up feeling like a million bucks! You are King of the World!
But with fatigue not so much. Instead, waking up is a never-ending continuation of the fatigue you’ve been feeling for the last 3, 6, 9 months, or even years. It’s like a prison sentence that you don’t even have enough gumption to get angry about. It’s like being in a cave without light. I could go on but basically FATIGUE is not being “tired.” Fatigue sucks the f-ing life force from your body. And the most depressing thing about chronic fatigue (well, there really is a list of things), is not knowing when or IF it will end. No matter how much rest and how little of everything else, that’s always the question. Will it Ever End?
I’ve written about fatigue before HERE and HERE. Hopefully, these posts can give you an inkling of the severity of the fatigue many Lyme patients as well as many chronic illness patients experience.
Hello my peoples! Yes, I have been so MIA these past 3-4 weeks, and I will tell you, I miss blogging. Yet, duty calls (code for JOB). Work started back up earlier this school year (as in 10-12 days earlier) and right now, it is taking up almost every spare minute I can manage along with being chronically ill. Although, and I am probably forgetting something major, I feel like this weekend will be a time for me to catch up. (Please, God, please!)
My Post Summer 2016 Life thus far: I am teaching all dual credit (high school/college) freshman composition classes this year, which is very cool, so this makes for approximately 132 students total across the five classes I teach daily. Awaiting my undivided attention in a cubby on my kitchen table are about 110 essays to grade, add to that about 75 online responses to a novel we read..the picture is becoming clear, no? To my credit, I did grade about 25 of these yesterday along with another 25 responses to another piece. And grades are due this coming Friday. You heard, correctly. And my Gradebook is blank at this moment. I believe, or rather hope, that I am just going crazy right now because, HEY, it is the beginning of the school year, and quite honestly, I blank out when it comes to both the beginning and the closing of any school year every.single.year. Sixteen years later, I should know exactly what to expect.
My Post Summer 2016 Health thus far: My health is holding up ok so far, but I have really been pushing it at every turn, and I know I need to get balanced ASAP, or there will be fallout. Is crying to and from school considered fallout? Maybe. Yeah, so that’s been happening. Not every day, but enough for it to be awkward. And not because I don’t want to go to work or come home; it’s just at certain points in the past 3 weeks, my body and brain just feel soooo overwhelmed and tired that I can’t even have an appropraite emotional response to anything. Mental capacity has shifted into Overdrive, and it is causing memory issues, I know it is the neuro-lyme. Or as stated above, I am just going crazy right now. *Note the key word is “now.” LOLs
The picture above is a perfect visual for how I feel at the moment! (from a really cool website http://www.firstcovers.com). Thanks for hanging in there with me. I promise I will get a decent and somewhat interesting post up as soon as I can get my head above water (please send positive vibes my way that this will happen for me THIS WEEK). As always, I appreciate your stopping in to read and comment. Drop a hello if you can. I’m missing my biggest bloggies fans. Have a fun and safe rest of the holiday weekend. BTW, I can’t get that Counting Crows song, Miami, out of my dang head! 🙂 Peace-B When summer opens, I see how fast it matures, and fear it will be short; but after the heats of July and August, I am reconciled, like one who has had his swing, to the cool of autumn. –Ralph Waldo Emerson
Hi out there! I wrestled with writing two paragraphs about how work is going and then, bam, they were gone. Since I cant muster anymore energy, it will have to wait. Maybe the disappearing text is reflective of my segue back into work? LOL
More to come on how work is going. Right now my Lyme brain cannot do anymore, so I bid you all a goodnight. Peace, my peeps – B
Hi all, these past few weeks, I’ve been having more issues than usual with sleep. Like getting enough of it. Lyme affects the brain, Lyme encephalopathy, we call it Lyme brain for giggles, and it messes with the brain and the central nervous system. In my case, memory, especially short-term memory, and sleep cycles are giving me hell right now. Since the time went forward at the beginning of march, and we do this again, why? sleeping has been choppy. Also, a few weeks ago, I had to go without one of my sleep aids for about 10 days because the insurance company had to reauthorize it or such. Don’t even get me started on that little fiasco.
So, I can go for days where I sleep well, you know, getting in those 8-10 hours of pure bliss. But then things can go array very quickly. Example. Last week due to disasterous flooding in our city, schools were closed all week. Free for all sleeping. No alarms. I tried my best to stay on schedule. Sunday, I forced myself to rise at 5 a.m. the usual work time. Then, I went to bed about 7:30 p.m.! Anyhoo, this is getting boring; moving on. Tuesday night I woke up at 2 a.m. nauseated. Headache. I got up to take something for my tummy and it was all downhill from there. I tossed and turned until my sickly sweet toned alarm sounded. I felt sick all day. It was terrible. Home, chores, rest. Then, I couldn’t sleep. Ugh! Double Ugh! I guess I finally drifted off about 8:45 p.m. Let’s just say I didn’t want to wake up at 3:45 this morning, yet, hello!
I do take some sleeping medications. Believe me, it doesn’t make me happy to take them but it is a necessity. I have to. Before I was diagnosed, sleeping was at best a few hours at a time. Without meds, I wake up every few hours, usually due to joint pain. Without meds, I wasn’t able to get any real deep sleep, and it was a killer. Not sleeping well exacerbates all other symptoms. Anyway, I am hoping that I can get a solid night’s sleep here as soon as possible. Yesterday and today I’m running on fumes. I can’t concentrate; I can’t think. It ain’t good.
If you want to know more about Lyme and how it affects central nervous system (CNS), causing neurologic and psychiatric symptoms, check out a fantastic resource at Neuro-Lyme. It is a great website with tons of information that is also backed by research.
I hope today is a good one in your world. Until next time – 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?
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.
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.
So, at my doctor visit a few weeks ago, we decided to retest for co-infections. I was tested in March 2014, along with the test for Lyme disease. At that point no other infections were showing. Now, two years later, and I am still feeling like every day is a real challenge as far as symptoms go. Dr Horowitz, in his book, Why Can’t I Get Better? , examines the possibilities of other infections going on along with the Lyme. A multisystemic illness as well as approach to treatment.
We decided to check again for the big 3, Bartonella, Babessia, and Ehrlichia. We also decided that we check for Candida, Mycoplasma, and the MTHFR mutation. I brought these up based on Dr. Horowitz’s book. Now, in September, my doctor wanted to do a through genetic DNA test. This test would give us info on several possible MTHFR mutations, it would reveal how well I process certain medications, and it would help us know what medications, both antibiotics and pain meds, are best for me. But the insurance denied such shenanigans and with my looming deductible of like $1,200 to meet first, well I had to pass on that test, unfortunately. At least for now.
Anyway, back to this most recent visit and blood work. Results are in: none of the Big 3 were positive. No Candida issues. Cool! But, I do have Mycoplasma, reactivated EBV, and an MTHFR mutation that hinders my processing of B vitamins. Ok, ok.
I won’t lie. This information freaks me out a bit. Actually, a lot. I mean I know many people are dealing with co-infections. It’s just damn. Lyme bacteria is complex and intelligent enough on its own. Now, add Mycoplasma pneumoniae to the mix. This is the bacteria that causes walking pneumonia. And then the EBV is active, the virus that causes mononucleosis. I’m basically hosting a crazy party in my body, and I didn’t even get an invite. Excuse Me?!?
Now what? Honestly, I’m not sure yet. My doctor has this extremely annoying system where you go for your visit, then do your blood work, then wait 6-8 weeks for a follow-up appointment wherein we discuss the lab work from 2 months ago. Makes really no sense to me but then again, I’m no doctor. What I am trying to say is, she didn’t change my meds for now and I won’t see her until April. Then, I guess we talk about the co-infections.
However, a dear friend sent me Healing Lyme Disease and Coinfections by Stephen Buhner. He goes into great depth about all of the mycoplasmas of which there are several, and how to treat verbally. Some of what he goes through is the details about how this bacteria works on cells, etc. This part is very detailed and I am pretty lost. From what I have read, this bacteria is also extremely deft and intelligent as well. He states that the coinfections work synergistically. Again, WTF?!?
I’m trying to take this all in stride, research as much as possible, and understand what all of this means. Please wish me luck as I will most definitely need it.
Anyone else dealing with a Mycoplasma infection? And if so, how is it going and what is the protocol for treatment?
**WARNING – THIS POST IS DEPRESSING. PLEASE DO NOT READ IF YOU ALREADY FEEL DOWN.
These past 2-3 weeks have not been good for me. I am struggling in every single area of my life: work, personal, mentally, physically. I have not been optimistic in awhile. Between attempting to cope with my cognitive issues, which have become many of late, along with the physical challenges of nausea and body pain, my personal relationships are indeed failing. I can see it happening, but I don’t know what to do to make it stop. Any of it.
I do my best at work. I know my attitude is not always optimal, but I am really trying my hardest. Communication is difficult even on a “good” day. And communication, well that’s kinda “my thing.” It’s something I take great pride in and something I have been good at my entire life. But not now. Although an overused analogy, my brain feels like swiss cheese. I can’t remember regular words such as pliers, consistency or ambiguity when I need these words. My short term memory is almost nil at times. I keep asking co-workers and my husband the same things over and over. I feel like I am slowly going insane. Not being able to remember, not being able to recall basic words while speaking, spelling words incorrectly all of the time is so very frustrating and aggravating. This proceeds to heightening my anxiety and my anger. I imagine that to some degree, this is what is is like to have the onset of Alzheimer’s.
And so, my negative persona and my overall hostility rises. I avoid conversations like the plague. I don’t want to talk because, to myself, I seem to make no sense at all. I imagine that others feel the same when I speak. I am alone. I feel so singularly alone in this.
There is no quick fix, and I get it. I have been very patient and open to any and all treatment over these past two years; I have diligently taken my meds. I do my best to keep my diet in check, I try to stay upbeat and optimistic. I am still working full-time. Yet, I still lose.
I still have the dreaded headaches every day. Joint pain. Every single day. I have made some progress with endurance but I still exhaust quickly. While, I think when in the midst of a migraine and nausea, “this is the worst!” really, the slow decay or what seems like decay of my memory and cognition is ultimately the issues that worry me the most.
For if I can’t use words correctly, beautifully, exacting, then who am I? Always one to rely on my wits and sarcasm, without these, I can’t and won’t ever find my way home, back to who I am. I know, I know. One day at a time. Like the Indigo Girls sing, “We’re sculpted from youth, the chipping away makes me weary.”
Hi out there! I sincerely don’t remember when I last posted so just in case, Happy New Year! I was sick through the holidays, and I finally kicked the crud after 3 weeks, a shot of antibiotics in the butt, and some more oral antibiotics. So, it is back to dealing with Lyme only which is a good thing in a way.
I wasn’t going to write today because I haven’t been doing well emotionally this past week, and I don’t really know how to explain it as I am also having difficulty with word recall and with just plain old thinking and processing, but here it goes. This past week, I have been experiencing a lot of agitating and frustrating feelings/thoughts. I think it is caused by stress on top of my limitations to process said stress. Multitasking is just a bad joke on me with my cognitive skills impeded. For the most part, I can manage, but I’m not sure what happened this week. One day, I felt like I was in an agitated and stressed mode all day long to the point that by the end of the day, it felt like it had amped up and turned into significant anger. Anger at what, who knows? I just felt very aggressive, and this is not me. I could not rid myself of the feeling. The thought of feeling insane crossed my mind. It finally went away hours later.
It happened again yesterday morning as my husband and I cleaned the house. We were working and talking about any and everything and I just started feeling the agitation building up. It is really a different feeling than feeling overwhelmed. When I feel overwhelmed, I feel like getting under the covers and staying there for a month. I don’t feel angry; I feel defeated. But this is much different. My mind starts racing a mile a minute and yet, I can’t think fluently. I try to express myself but nothing comes out the way I am thinking it will. Then, as if to add to the pile of thoughts, my brain starts honing in on things like I need to pay bills, how will I make it through the work week, how can I get my grading done with my brain in jumbles, what meals will we need for the week and how will I get to the store? It all starts tumbling around in my head and then my mouth starts moving but in no way am I articulate. Finally, it feels like everything speeds up, and I can’t stop it.
I tell you that this is a new thing. I am wondering, is this a new symptom of the chronic Lyme? My husband agrees and says it is new as well. I really don’t like it at all (not that anyone would) because I start feeling out of control, and I am not sure how to make the OCD thoughts and the agitation stop. Does anyone experience this or something like it as well? And if so, what kinds of things do you do to cope? Yesterday, I went outside and tried to do some breathing exercises. It did help for a bit but it was still kinda scary. Even at this point, my brain feels like it is gearing up now and just thinking is becoming tiresome and yet, stressful!
I sincerely would appreciate ( insert NEED) some feedback and suggestions. Thank you! I hope your week has been a good one! -B