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

 

 

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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.

http://netdna.tinyhouseblog.com/wp-content/uploads/2014/03/medicineshow.jpg

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

The Livin’ Ain’t Easy

Hello to all. Summertime is here, and Janis Joplin’s rendition of “Summertime” is playing in my head. The “livin’ is easy,” no? Alas, not so much. It’s been a challenging first 2 weeks of this break to say the least. Summer began last week, (and I am a teacher 🙂 ) and I had a few days that I sincerely enjoyed. I worked one day, but then by the next day, I had so much back pain I could not get out of bed without help. The pain was on my right side and severe. Not just like a pulled muscle but achy and sharp all at the same time. So, I rested. Logically, I figured my body was just finally relaxing. I just needed to rest. Yes, right, rest would help. Also, I was able to get an appointment the next day with my LLMD just in case.

But, the pain did not improve. By Friday, the pain was almost unbearable. But no fever. My husband had to drive me to my doctor appointment. I broke down in tears several times because of the pain; it was ridiculous. You may be asking, Why didn’t she go to the ER? Well, we know with any chronic illness one doesn’t get far at the ER.

After a urine analysis and some more tears, it was determined that there were no kidney stones and no kidney infection. Whew. But I did have a possible UTI. Doc prescribed different antibiotics from the ones I already take for treating Lyme and some mega pain meds. Thank God. She told me that we would treat for 3-5 days, and then I should be good to go or at least back to Lyme Normal.

But, here I am, a week later and still having lower back pain. Not as crazy or severe as last week, but boy howdy, it’s still there. Next up then is a lower back MRI with and without contrast. This isn’t scheduled for another week. Before my diagnosis with Lyme Disease, actually 2 full years before being diagnosed, I had a spinal and brain MRI. I was having hip pain on the right side and numbness in both feet (both decent symptoms pointing to possible Lyme disease). That MRI was inconclusive for MS so the neurologist sent me on my way. If only one of the  4 doctors I saw that summer had tested me for Lyme I could have started treatment 2 years earlier and 2 years less sick. I’m not trying to be whiney, it just makes me angry sometimes.

I spent yesterday and much of today in bed. I’m struggling to be productive, to be of value but I spent and will spend most of my time online here or FB. I need distracting, and I don’t have the concentration skills for reading of any length right now. Struggling to stay positive and pain free are the real challenges at this moment.

Am I worried about the MRI? Not really, and why waste time worrying? I am hoping of course that it gives us some insight into what is going on in my lower back. I’m sure that whatever it is that it is Lyme related somehow, and I am very grateful that I now have a doctor who can and will help me and that it isn’t a waste of time and a lot of money like the last one I had in 2011. Last time I definitely got conned in that I had no idea that the Imaging office was out of network even though my neurologist had sent me specifically to that place next to the hospital where he was located! Oy. Insurance companies, but that is for another post.

image

I’m trying my best not to be depressed. But thoughts and lists are piling up in my brain:  I’m not doing anything productive or fun. This is my summertime and the days are precious. I had to cancel a few appointments because of the pain issues. My husband has been working non-stop, and I haven’t seen him much. I haven’t been away from the house for a week, whine, whine, whine.

Anyway, thanks for listening and thank you all so much for reading. I do hope you and yours are having a good time and that you are able to enjoy the good stuff coming at you.
Gracias – B

Peace and joy to you all – B

Havoc! And #LymeDiseaseChallenge!

Well, ladies and gents, it’s been a nightmare of a ride these past 10 days. Ironically, my last post was discussing the sometimes, most times, sporadic onset of symptoms. Then, tada! Totally happened to me. And the worst. I hadn’t been feeling all that great over Easter. I was having tummy issues, nausea, indigestion. And headaches. Really painful headaches. I missed a family member’s birthday celebration along with Easter since I was basically incapacitated.

Then it was Monday. And all hell broke loose. I got up and started getting ready as usual. About 25 minutes into my routine I began getting dizzy, lightheaded, and severely nauseated. Just like that. I laid on the bed for a minute, panting and hoping I wouldn’t throw up. I couldn’t go to work like this. No way, no how. I spent the entire day in bed miserable. I couldn’t eat. My stomach kept cramping and then the migraine made its appearance. Tuesday was yet an instant replay of Monday. No fever, but I could not stay upright. I have never felt this horrible before.

Wednesday I already had an appointment with my LLMD set. My mom had to drive me. I was afraid of a dizzy spell or whatever might show up next. I’d like to say my doc had all the answers. I wanted Doc to tell me that I could do *this and I would be OK. Alas, as it always is with Lyme and Company, not so much. My EBV is reactive and has been since January. I have a mycoplasma pnuemonia infection. I have one MTHFR mutation. I also now may have an hpylori bacterial infection which I am being tested for. My body is on the fritz. Overloaded by fighting on so many fronts at once, I don’t know, maybe my immune system has just given up. I was to stop my antibiotics, and I was directed to bed rest for the next 2 days through the weekend, returning to work Monday. Oiy. I told Doc that this is the worst I have felt since beginning treatment 2 years ago. Definitely scary and disconcerting. The rest of Wednesday was a replay of Monday and Tuesday. I swear, I haven’t slept so much in my life.

So here I am, resting. The nausea let up finally yesterday. I was able to eat a decent meal as well. Headaches are manageable. I feel like at least half a person now. Missing this much work had been distressing though. It worries me and while I want to plan for the future, what do I plan for? Right now, I plan for the Worst Case Scenario: I can’t work. Realizing many of my fellow Lyme sufferers are already in this boat, I am extremely grateful that I can still work and that I can manage these incidents for now.

While I am waiting to get my labwork back, Doc tested me again for EBV, mycoplasma, hpylori, thyroid (I have Hashimoto’s) along with ATP, CD57 and Lyme, I am wracking my brain about what I can change on my side to make things better. I definitely need to detox better and more. I think it is time to make a serious diet change. And most importantly, I need to embrace the fact that I am chronically ill and start working with what I gots. As the Indigo Girls sing, “What makes me think I could start clean slated, the hardest to learn was the least complicated…”

*you know, a pill, a diet, a one stop shop cure

P.S. My pretties, please do not forget about www.lymediseasechallenge.org and check out Dr. Oz and his segment about The Lyme Disease Challenge!  #lymediseasechallenge

www.lymediseasechallenge.org
http://www.lymediseasechallenge.org

I hope it is a pain free day – B

Sunday Morning Coming Down

“Well, I woke up Sunday morning, with no way to hold my head that didn’t hurt…” – Kris Kristofferson

Up and at ’em, kind of early this morning. I honestly feel like I have a hangover. However, no alcohol was consumed. Scout’s honor! Not one drop! Lyme seems to suck the fun out of everything. Just a disclaimer: before Lyme, I did enjoy having a couple drinks on the weekends. My favs included white wine, and in the summer, some beers. But all of that has come to a complete halt as of, or even before, my official Lyme diagnosis. My body cannot handle alcohol.

On one hand, we can chalk that up to a Plus. On the other, it really does suck that I sincerely cannot have even one drink without feeling like a truck has run me over. Sometimes, like today, I feel like a truck has run me over anyways. Fun. A couple of reasons to stay away from adult beverages as a lymie is one, the sugar. The bacteria feed off of the sugar and LOVE IT! So, let’s work on not giving the bacteria Borrelia burgdorferi or Bb any more ammunition. It already has the upper hand here! And second, many of us are being medicated with antibiotics. Strong stuff too and at high doses. Alcohol can definitely minimize the effectiveness of the meds and again, we don’t want to hinder our ninja fighting machine anymore than what is absolutely necessary. When I do treat myself, and rarely, to a drink, it is something to enjoy. How do you feel after consuming alcohol? Or is there any other foods/drinks that trigger symptoms for you?

Wishing you all a Happy Sunday. -BHL-980[1]

The Cyborg

This is the nickname my husband has anointed me with now that I have my very own PICC line. Yes folks, step right up to see the show! I’m an official cyborg! My new little friend was inserted on Monday. Now, this is the first time I am doing IV antibiotics, and I hope it will be my last. I was anxious about the procedure but honestly, it wasn’t terrible. It took the doctor a whole 15 minutes to insert and stitch. Actually, most of the time I had no idea he was working on me. I felt the numbing shot, a tug here, a tug there and presto! Done. The doctor and nurses chatted while they worked and I kept thinking, come on doc, when are you going to get busy? Stop chatting and get this thing in my arm, for reals! Ha,ha and then he was done and gone. So the line is in my left arm since I’m mostly right-handed. The home nurse came yesterday. Now mind you, we live pretty far out of the city, in a double wide mobile home with, hmm, well we have six of our own dogs. Add in a few of my mom’s dogs(she lives on the same acre we own, so that makes 8 when the nurse showed up. Holy geez! Luckily, they all ran outside through the roof is door which I closed quickly behind them! Let’s just leave it at they had some great “yard time” yesterday. They were way more than ready to get back into the a/c when the nurse left. She is a small, petite lady and I really like her. I did my dose on my own today for the most part; my husband was very attentive at making sure there were no air bubbles in the line. I won’t bore you with the details of all the ins and outs of the pics….yet. Heading off to bed. The soreness and stiffness have had a hold of me for a few weeks now and today I have just been exhausted. I was still able to work in a few rounds of Candy Crush though so all in all, I feel like the day has been a Victory!   Peace, munchkins. -N