The Lyme and Stomach Tango

Not as sexy as you think….

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.

tango

                             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

 

Fatigue, I Hardly Knew Ye

I really never knew what “fatigue” was until I contracted Lyme disease. Honestly, I cannot even think of a useful metaphor to describe real life altering fatigue. I could say it feels like cement blocks are tied to your feet, but that truly only tells half the story. I could say it feels like you are stuck in quicksand and cannot move, but again, only a slice of the true experience. True fatigue cannot be explained easily to those who have never experienced it for any length of time. Maybe imagine if you will how you have felt at your MOST TIRED. Where you cannot even move. And then, try imagining experienceing this daily for months and even years. Fatigue encompasses everything: the physical, the mental, and the emotional. Not one aspect of being a human is left out from the fangs of fatigue.

tired-dog

 

I know what tired means, and I am sure you all do too. And sometimes, being tired is a good thing. It can mean that you had a productive and busy day. I remember when I was a kid, I would be tired from running around all over outside all day. Having dinner, a bath and then falling right to sleep conjures a happy memory. But fatigue? Real fatigue? I never knew ye before this. Now, I can pinpoint the ebbs and flows as accurately as a Richter scale.

Since before being diagnosed with Lyme in March 2013, I would suffer phases of fatigue. It was cyclical and so I attributed it, during those times, as just pushing myself too hard, taking on too many projects, doing too many activities. It would linger for a bit and then disappear. Gone are those care-free days. Not anymore. The fatigue has latched on and for the past few years, I have only really experienced varying degrees of fatigue. But it all boils down to the same thing: I’m too exhausted to do much of anything.

I completely understand that people who have not experienced severe fatigue struggle in trying to relate. I did as well in my Pre-Lyme life. But fatigue is not being tired. If I am tired, I sleep. I sleep and then feel rested and ready to go. With fatigue, not so fast. I can be soooo wiped out and yet. When I climb into bed, I may not be able to sleep. I go to bed tired and wake-up tired. During February, it was even worse. I could barely get up and go to work. Some days I just didn’t make it.

tired120

Never in my previous life had I spent a whole entire day in bed because I was “tired.” Now, that happens periodically. There have been several weekends this spring where I only manage to get out of bed to use the restroom and maybe to eat. Even eating can feel like an overwhelming burden sometimes. For a few weeks this past February, I would be so fatigued, I woulod actually feel sick to my stomach if i had to move around at all. Now that is some “sh*t just got real” stuff.

And yes, my doctors and I have run the gambit as far as making sure nothing else besides Lyme is causing this issue. Regularly, my doctors check my vitamin B and D levels. I give myself shots of B as well as Glutathione (helps the body make energy) on a weekly basis. I have cut almost all sugar out of my diet (not all but a lot!), I only drink one cup of coffee a day (usually!) and I steer away from caffeine the rest of the day. With help from medication, I can in fact sleep a solid 8 hours without waking up with joint pain during the night like I was doing before treatment.

Still. The fatigue hangs on. Being so tired makes it hard to concentrate, hard to be productive, hard to communicate. Sometimes, I just try to stay away from people because it is so exhausting. Sometimes, merely watching television is an overwhelming activity. Sometimes, I feel like I am looking from the outside in on myself and I wonder, WTH?

One story that is actually very helpful in communicating fatigue to “normal” people is the Spoon Theory written by Christine Miserandino @ www.butyoudontlooksick.com  This anecdote has helped me as well as some of my family and friends to understand in a relatable way.

Luckily, right now, I am on an upswing (if you will) as far as energy is concerned. Now, let’s not get crazy – this means that I can basically get through the day at work (a big deal!) and then rest in the evenings and on the weekends. I am not choosy; I will take whatever improvement I can get at this point.

I hope this post finds you healthy and happy, my friends. Until we meet again – Belle

 

 

 

Tell it Like it Is

Well, my people, it is Sunday afternoon. I’m really happy I survived this past week. I hope all of you did too. I am feeling much better today. Thank you all for your support. Today, I was pretty productive if I do say so myself! After a week of being too sick to do anything besides lay in bed, I was up and fairly active today. And no nausea! Which makes this day even better. Since I was way behind on grading, I told myself that if I could knock that out, I could come and write here. It was a great incentive!

I’ve been thinking a lot about this blog, and its focus. Yes, the focus is on Lyme disease and more specifically, my own personal experiences with treating and living with this disease. Over this past month, I have run into some people on social media and people in in my day to day life who also deal with a chronic illness and that, for the most part, has been a wonderful way to connect. However, it has also made me reflect on my decision to begin telling others about my illness. Coming out of the closet, so to speak, about having Chronic Lyme disease.

When I was first diagnosed with Lyme disease, I told my immediate family and my boss. In the beginning, while I knew I would have to treat for awhile since I had been sick off and on for about 3 years before the diagnosis, I had no idea that this might be a chronic illness for me. And, as I was so very sick back in 2013 when I found out finally what was going on, I thought it only prudent and honest to explain what was going on to my boss. The support was overwhelming. I also shared with a few colleagues who are dear to me. Otherwise, no one else knew, and I was happy to keep it that way. In my head, I felt that telling other people was a burden to them. It almost felt like by telling them, I was making excuses about why I couldn’t keep doing everything I had been doing. Being sick, to me, was a sign of weakness. Not that I thought that about other people. That only applied to me. Always the perfectionist, I am way harder on myself then on others (although I am sure my students would beg to differ!).

This strategy, the one of silence and limited sharing about my health, worked for a bit. Well, almost 2 years. And while I did make progress in treatment, I just could not continue with all of the responsibilities I had at work. I was in a leadership position and a club sponsor. These along with teaching 5 upper level junior/senior classes every day. I just had to make changes and move some things off of my plate so I could focus on improving my quality of life. This treatment thing was taking much more time than I had anticipated. Making the decision to no longer sponsor the club I had started back in 2008 and then also stepping down as a leader, these were tough, tough decisions. I struggled with feeling less than, incompetent, weak…oh, the list goes on. Reorganizing my priorities was a challenge. But I knew that I did not want to end up sacrificing my work by becoming more ill or vice versa. Something had to give.

bull

Taking the bull by the horns, I relieved myself as club sponsor and my leadership position at the end of last school year. But in order to do this, more people were going to have to know the reasons why I was making this decision. Uncomfortable to say the very least, at least for me. I’m not big on sharing private things unless it is with close friends. In order to move on though, I did indeed share the basics about my health issues with my colleagues and my boss. I am chronically ill at this point, I have good times and then I have some really bad times, such as this past week, and I cannot make it to work. Communicating with others what was/is happening to me has become a huge relief.

Looking back, I honestly can say that I wish I had done so earlier on. Being more open and honest about my health has actually led to some great conversations with others. It has humbled me in ways I never knew. The kindness and understanding people have is truly amazing. Do I still have days where I feel like a burden? I sure do. But opening up has been a truly important step for my recovery, I believe. Thank you all for joining me on this journey!

Have a great week! -b

Nobody Said it was Going to be Easy

TGIF! Wow. What a week. I really hope yours was better than mine. As I have mentioned in some of my previous posts Turbulence of Lyme SymptomsFire in the Hole, and Derailed, there is a lot of inconsistency in how Lyme will manifest itself each and every day. There are some things, in my case, that stay pretty constant such as daily headaches, joint pain, and fatigue. But then there are those other issues that crop up from time to time, I guess maybe they are flares?, and it is impossible to prepare. What’s the saying, the devil is in the details?

thermometer-temperature-fever-flu-medium

And so last Sunday, I started having severe nausea. It lasted the entire day. I couldn’t eat, sleep or do anything. I just laid in bed, trying not to move around. The moving made the nausea worse. Indeed, it was a day where I just wished I could get out of my body for even like 10 minutes to get some relief. I chalked it up to eating some jalapeno sausage that morning; I knew I shouldn’t have eaten it but it was delish but soooo not worth it.

Unfortunately, no. The illicit sausage was not the problem. On Monday, when I tried to get up to get myself ready for work, I felt really nauseated. Then, the headache joined in. There was no way I could make it to work, let alone teach all day. Monday and Tuesday were more of the same. In the meantime, I was trying desperately to get into my Lyme doctor (LLMD) but there were no appointments available- for the entire week. Whaa? They were very clear that they could NOT fit me in even if I came in when they opened and waited. When I explained again my symptoms, the front desk told me that a nurse would return my call that afternoon. That was Tuesday. By Wednesday evening, no one had called me. Although I was able to get up and go to work on Wednesday, by that afternoon the nausea was back rearing its ugly head. Now, please do not think that I have an entitlement issue. I realize doctors are extremely busy and overbooked. I realize that there are other patients out there who also need to get in for a visit.

On the flip side though, this is my doctor who is treating me for Lyme disease. I can’t just go “anywhere” to get treatment. Other doctors, and almost all here in the South, are not trained on Lyme nor do they actually believe it exists here in Texas. This is the state of the medical options we have for Lyme here and in way too many other places in the US. In fact, Lyme is endemic to Texas. Check out this research done by Texas A & M University “Lyme Endemic to Texas.” Thus, going to another doctor is really more of a waste of time than anything. The ER was an option if I started having other issues, but mostly it was the severe nausea that was the new thing. All of my other symptoms are dealt with in the daily grind; they ebb and flow. But the nausea. God, it was (is) the worst.

It feels like I need to throw up (sorry TMI!) but I can’t. That kind of nausea. No vomiting though. I tried to stay very hydrated. I tried eating Saltines off and on. Yet, about 30 minutes after eating or drinking tea or Sprite, hello tummy monster! Anyway, I emailed my doctor, and I was able to get in yesterday afternoon. Supposedly, I have a virus. I say supposedly because honestly, I think it is more Lyme related than anything else. But I took what I could get which at this point was to get some sort of relief from this symptom. I was prescribed Tamiflu and anti-nausea meds and told to come back next week if it was still going on. Today was better because of the anti-nausea meds, but I’m still having experiencing the nausea.

This is how the Lyme bacteria works. It is a very stealthy and intelligent. According to Lymedisease.org, “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. If not treated as soon as infected, then the chances of it reproducing and getting into every system of one’s body is extremely probable. Now granted, not everything can be attributed to Lyme. But for me, most of the time, my symptoms are directly related to Lyme disease.

Again, I hope you all had a much better weekly journey than I did. Take care – B

 

 

 

Accomplishment for Today?

Make that a zero for accomplishments today!

Pretty much nothing. I have been lazy all day long. Or honestly, resting. I did get two loads of laundry done, and I paid some bills online. Other than that though, I spent most of the day in bed with the heating pad and the puppies.

This was our first week back at work after Winter Break. While it went well and I have no complaints, I am wiped out. And I try not to worry about the next close to 18 weeks this semester; it is difficult not to. It isn’t productive at all, and I know this, so moving on.

ChristmasOwl
image from http://www.myowlbarn.com

Also, I have been without the BB drops I have been taking the past 7 weeks for about a weekish. This was mostly due to my own inability to plan ahead. I just started back on them last night. I’m trying not to lose ground, so I am back on at 12 drops twice daily. We’ll see how that goes!

The weather here which has been damp and cold, is causing me stiffness and lower back pain for most of the week and even more today. At least I will blame it on the weather. But who knows if it is the weather or a Lyme flare or both? Ah, the mysteries of Life!

Oh, wait, I did go outside, and believe me it was mega windy and cold. No snow here though, and so that makes it much less of a big deal for sure. Deciding to move the 2 bags of birdseed, 35 pounds each, into the storage shed was a large task for me. But the bags have been either in my car trunk or outside the gate to the front yard for a solid 2 weeks. Moved them inside the gate, into the wagon, filled all of the feeders, like 5, and then moved the bags into my mom’s little storage shed (she lives next dorr and we share about an acre and a half). There you have it. The big action for today! At least all of the birds were impressed and happy.

It may freeze tonight but it is kind of cloudy out. If it clears off, we’ll get a freeze tomorrow night for sure. Wish me luck that I get more done tomorrow. At the very least, I will have to run into the small town near us and get a coffee maker. Mine took a dive today and well, there is absolutely nothing worse than not having that Juice of Life cup of coffee when I rise. It ain’t pretty people. I hope you all had a waaaay more productive and less painful day than I.

Until we meet again – B

 

 

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

 

 

A Reality Check

It’s December 12th, heading swiftly towards that blinged-out-commercialized-day of Christmas. I’ve put up a few decorations, the tree, some lights outdoors. The weather has been in the highs of 78-80 this week, but it is now pouring down rain and windy as all get out outside. We finally not only saw the snow geese (Canadian geese); we saw a few flocks of them as well. Supposedly, the weather is turning chilly in the next few days as a cold front creeps its way down here. I’ll believe it when I feels it.

Since my new doctor appointment early in November and since starting on the herbal tinctures as my new treatment, dropping the antibiotics, I actually have felt half-way decent. The fatigue has decreased, the migraines are few and far between, and the nausea is way less. It honestly has been a nice breather from the new normal of suckthelymeville. Thanksgiving break was pretty awesome. I was able to do a few things that I haven’t done in so, so long. It was a real treat!

But I knew these next few weeks would be the real challenge at work. The weeks between Thanksgiving and Winter break. While yes, technically, this is only a span of three weeks, believe me, it feels like six. It’s the end of the semester. Things are coming at teachers from every which way. It is always a tough time of year, but as usual, for me it is breaking me down. I know it did last year as well. I’m not trying to be whiny about it at all. It is what it is. I try to keep in mind that even for normal, healthy people, this time of year is extremely stressful no matter what profession and this helps a bit. But I will say this, by yesterday, I was all played out. All day long, my brain was empty and sore. I couldn’t focus on anything at all for more that a nano second. You laugh, but this is the truth. I tried to be productive. Now, I am laughing!

Today, I feel like a bus hit me. The soreness, the aches, the headache, the beloved (not!) nausea. I haven’t slept well in the past few nights and last night was no exception. Tossing and turning. Laying too long in one position produces pain, this wakes me, I turn over, kind of awake, then the process begins over. The unrestful sleep is killer and is just exacerbating all of the other awesome Lyme stuff. My head is hurting. Not a migraine, but just enough to make my stomach nauseous. I hate this combo of symptoms in particular. It feels like having the flu which is just downright miserable in and of itself. Only with Lyme, you don’t know when it might let up or go away. So, Reality Check.

 

Guess what, sucker? You still have Lyme disease!

I LOVE to fantasize. About activities, about going places, about projects at home, about eating yummy food without experiencing indigestion. It keeps my mind busy and delighted, it can sometimes distract me from the ugly gloogy gooks rumbling around in my body. And then. Sometimes, I go a bit overboard going so far as to actual Make Plans to do a said fantasized scenario. This rarely works out well. This holiday season, we have two events we have said “yes” to: an open house event and a dinner event. And even committing to these two things were difficult. While I definitely want to go and have fun with people, especially this time of year, I worry so much about getting to that day / evening, feeling terrible and then canceling. Not only is it disappointing for my people, and for my husband, but it is so freaking disappointing for me. The fantasy comes crumbling down, and I’m left with the slap in the face. That realization that I’m still limited. This is Reality.

How is everyone doing out there? Drop a comment or two so I know I’m not alone. Hoping it’s a pain-free day for all! -B

 

 

 

Talk About Zombies

The fatigue is back, and it is taking absolutely no prisoners. If you recall, my LLMD had me take a break from the antibiotics for about 7-8 weeks, recently. I’m really not sure why except that I could use one after 27 months on abx. For the first 3-4 weeks, all was good. Headaches let up, nausea was less. I was hopeful. Then at the beginning of September, I caught a cold. Pretty much all hell broke lose.

I had the cold a solid week. Then I still had sinus, coughing, lingering everything. And the Zombie fatigue came on, full throttle. Ah, the misery! And the achy joints and just body aches. I was convinced also that the EBV was activated again with the fatigue being so terrible. It took everything I had to get to work, and then back to bed every day. I spent the weekends in bed. When I get into my doctor at the end of the month, she said upper respiratory infection caught me. Let’s check for the EBV. I assumed, and I had a list – that we would also check Lyme, Mycoplasma, HHV-6, thyroid, etc. since I told her I was having such severe fatigue. But,nope. EBV came back quiet, and she had actually tested for nothing else. And my follow-up? Yeah, in December. December?!?! Frustrated, I emailed my doctor about my concerns, and now I am going back in a couple of weeks. I’m not sure what will be different this time around, but it’s worth a shot. My doctor did not have a suggestion for the fatigue other than she still thinks it is caused by Lyme. Honestly, I don’t know. When I was at my sickest, right before being diagnosed, I did have this kind of fatigue so it is very plausible. I just worry that now that I have been dealing with the Lyme for so long, is something else rearing its ugly head?

In about 3 weeks, I am actually also going to see a new LLMD. I have been scouting about for someone else to add to the “team.” I love my doc, but I feel like we never have enough time to address all the issues I am having. Lyme is so complex once it is in the chronic stage, and she really just doesn’t have time for the treatment I need right now. I am hoping this new doctor works out; I will still see my LLMD here as well. The new doctor is about 5 hours away so it’s not like I can jump in a car and go see her anytime I want to. I have heard she likes to try to treat Lyme as a whole rather than in pieces. FIngers and toes are crossed that she can help me out.

But this fatigue needs to go! I’m taking iron and vitamin B hoping that helps some. We were supposed to go out of town this long weekend, but I actually got really sick Friday afternoon, and we couldn’t, or rather I, couldn’t manage the trip. It was disappointing. My husband and I were looking forward to going to the beach and getting out of the house. Instead, I was in bed Friday afternoon through yesterday mid-morning. I think I may have actually had the flu on top of the Lyme issues. I’m feeling a little more like myself today.

I’ve never experienced fatigue like the Lyme fatigue that comes on. When I used to say, “I’m tired” I meant that I had worn myself out doing most likely something physical. But once rested, I was back to it, taking my energy for granted. Now, I never feel rested. I sleep, I rest, I don’t do much, and I still feel so exhausted; it is a chore to think about getting up to brush my teeth. The fatigue just adds to the memory issues and the brain fog. Sometimes, I just want to lie in bed, in the dark, with no sensory anything because sometimes this is the only way I can think straight. Does anyone else need to do this? Just go somewhere quiet and lay down?

I know it is overused, but this fatigue really does make me feel like a zombie. I seem to move in and out of each day half-awake, in a weird trance. It’s hard to explain. Outside of work is difficult enough but I can lay down whenever I want. Work is a whole other challenge. I just try not to think about getting through the week ahead but instead focus on getting through the day. This strategy helps I think. And no matter how much I rest each day, by the next day, the fatigue is compounded. But I want to work. I want to do things. I don’t want to be a Zombie. None of use do!

Happy fall, peeps – B

Fall in the mountains

Two Steps Back…

Hey all you people! I haven’t been in touch lately. School started back, and it has been a whirlwind ever since. Mostly, I come home and lay in bed to rest. I rest on the weekends so I can work through the week. Or at least try to. I’ve been off of antibiotics for almost 7 weeks now. At first, there  wasn’t a considerably difference. After a few weeks, the headaches became less and the nausea was a lot less. Otherwise, things were not better or worse. But then, the first week in September, I caught a cold. My husband was in bed for three days over Labor Day weekend; I stayed as far away from him as possible! But so many people were sick at school, it was impossible to stay away from the germs.

So it got me. I held on, and I really thought I was winning the battle. But since then, things have gone south. My energy level is nil. I have a recurring sore throat on the right side and I have issues going on with my sinus. I’ll spare you the gory details but suffice to say, my sinuses are full. I can breathe through my nose most of the time, but there is stuff way up in there that comes out in the morning and evening through coughing. The body aches and the back pain are back. No appetite really. I’m guessing that the EBV is active again and maybe the Mycoplasma pneumonia load is high again. Depressing? A, just a little.

Walking forward.
Walking forward.

Heading to my LLMD tomorrow. While I look forward to going, I know I will walk away disappointed. Labwork takes a week, and then it is a VM recording from the doctor about the lab numbers and what is next for treatment. Nothing seems to change much. No matter what, I am guessing my doctor will end up putting me back on some antibiotics, and we move sideways? It hasn’t been a move forward in ahile by my account. While the summer was nice because I could rest as needed, I feel as though I haven’t made much progress in terms of my health since I had the Picc line last summer, 2014.

So, now what? I drag myself through every day, hoping the next day will be better. I’m finding less and less to enjoy as I am too fatigued. I have an appointment with a different doctor in November; I’m hoping to try and find some other ways to treat this along with antibiotics. I do have tons of supplements and I am trying to take some antivirals, but it got to where I was taking like 30-40 pills a day and that got old real quick. My diet needs to change. I know this. And I need to make it happen. I just get so tired!

We’ll see how tomorrow goes. At least I can tell my doctor what is going on and that in itself can be a relief. I promise to update soon.

Peace – B

On the Antibiotic Wagon

I hope everyone is staying cool. Temperatures here have been raging at around 105 degrees and that is the REAL temperature, not the heat index which is even higher. For the love of God, it is hot. Between noon and about 7 p.m., it is way too hot for me to go outside. The heat just completely zaps me.

I had my doctor visit a few weeks ago. Things seem to be pretty status quo in that my numbers are all hovering basically at the same place as in June. Here’s where I stand right now: CD57 – 33, Lyme bands 23 and 41 showing IGG and band 41 IGM, EBV is reactivated; it had been inactive since April, Mycoplasma finally under control, and HHV6 active again. In all honesty, this is for the most part where I was at the beginning of last summer. What I expected was my doc would put me on another course of antibiotics since I have been on amoxicillin for about 5 months now. Instead, on the patient lab VM, she said we were going to take a break from the antibiotics.

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It freaked me out. I listened to the VM about 3 times. My brain is like, Are you Sure?!? But there are no certainties with Lyme now, are there. I was so sick when I was finally diagnosed and I have not had more than a day or two break from being on antibiotics in 27 months. In in those 27 months, I have made some significant strides. So, yes, it is freaking me out a bit! I know I need a break, my body needs a break, but I feel like I have lost my walking stick. It’s only been 3 days without meds, and I keep analyzing myself, waiting for new symptoms or for the flu-like monster to rear its ugly head. It’s hard not to worry.

Also, right now is about the most stressful time for me at my job, besides at the end of the school year. In a mere 10 days, school is up and running and so am I. I’m struggling between being happy to return to the classroom after a nice summer break and the dread of becoming severely ill. While I know it is not a good thing to worry and stress, it’s there in the back of my mind, the What If? Meditation, and I use that term very lightly as I am just dipping my toe into that arena, is helping some. The breathing combined with focusing has helped me clear my mind some. Like one of the mantras in AA, I’m taking it One Day at a Time. Or one hour at a time. It’s just a challenge for sure.

Anyway, I’m on the wagon, and we’ll see how it goes. My next doctor visit is early October. By then, the weather will still be hot, but the evenings and mornings will be cool, school will be in full swing and hopefully, my immune system will have stepped up and kicked some butt.

For those of you not on antibiotics, or taking a break from them, any suggestions on how I can support my immune system right now? I appreciate any and all recommendations.

Till next time, friends, -B