Tag Archives: lyme disease

Validation

So I’m going to try to write, but I warn you it may not be the most coherent thing ever. My brain has been slightly better the last couple of days, but still pretty dumb. :/

I’ve been thinking lately, what a very strange feeling it is to finally be recognized as being as sick as I feel. For years I have sworn that I feel like I’m dying, but every blood test/scan/etc comes back normal, or at least “just a little off”. Not lately!

The last month has just been a deluge of abnormal tests, new diagnosis’, and things to deal with.

First, the diagnosis of a heart conditions and scheduling a pacemaker implantation (coming up in 2 weeks!! Ahh!)

Then, results of my thyroid/iron panel labs; despite being on high doses of thyroid hormone my levels are still low! What to do about that, I have no idea at the moment. My doctor says raise my dose age (again!) but I’m not so sure about that…

My iron panel is so freaking confusing…
Ferritin (storage iron)- VERY low (but my Dr says it’s ok?)
Total Iron- normal
Binding Capacity- low
% Saturation- high
So do I take an iron supplement or not?! Ughh.

Then, because I am not responding much to antibiotics (not much herxing, and not feeling better either…actually I am worse than when I started treatment) my doctor wants to give me a picc line. (This is essentially an IV, that is surgically implanted, and you use to receive IV meds in your home). This is very aggressive treatment, and tends to make people herx very badly. I agree that I need it, but I have a life! I have to work! I can’t get that sick! So we agreed to postpone this discussion until my next appointment.

At my doctors appointment she drew some blood, for a couple of different things:
1) to send to Igenex for another western blot test (the best testing option available at the moment)- still waiting for results ūüôā
2) to send to a researcher at a local university who has developed his own method of testing that is said to be very accurate and reliable- he found “multiple positives for Lyme” in my blood. I definitely have Lyme disease!
3) to run a C4A test (this tests inflammation caused by Lyme or toxic mold exposure)- *3 1/2 months ago my results were 2437 with a normal range of 0-2830* Now? 21,311!!!. To quote my doctor this result is “astronomical” and “the highest she has ever seen”.

Finally, an explanation for why I have been saying for months that something is really, very wrong…and for why I have been steadily feeling worse since starting treatment.

It’s weird, really weird. For instance, this morning I saw my cardiologist, and I mentioned to the medical assistant that I was feeling pretty crappy today so she did an EKG. When the doctor walked in the room, she took one look at the EKG results and said “well no wonder you feel like crap!!” I thought I was dreaming! A friend heard my C4A number and texted me last night saying “I think you might technically be the sickest person I know…no wonder you are having such problems”. I am now *that* person that my doctor uses as anecdotal evidence for her other patients…you know, when they say “I have a patient who…”…that’s ME. (I know this because a friend of mine saw my doctor yesterday and told me that she was telling him a story of one of her patients who had a C4A level over 20,000…he said “I wonder who that could be?”)

So weird. So so weird. But really nice too.

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Salt, socks, and heart beats

I know I promised a post about the new treatment I tried…be patient, I have another appointment this weekend and maybe I will write after that. One session just isn’t a very good gauge of how it helps.

For now, however, I have big news…I have (another) new diagnosis. Ready for this one?¬†

Brady Tachy Syndrome. 

Weird name, I know. 

Anyway, it means that the electrical system that tells my heart when to beat is fried, and therefore my heart is just doing all kinds of weird things. It speeds up, it sloooooows way down, it skips beats, and the top half likes to be impatient and beat before the bottom half is ready. 

I told you it was weird. 

 

So I got a crash course in how to read an EKG from the doctor today, so I’ll pass on to you the bits of info that stuck…just because I think seeing the EKGs really makes it evident what I am talking about.¬†

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Where that arrow is is where my heart SHOULD have had a beat, but didn’t.¬†

 

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See up at the top left there? It says “bradycardia: 40 BPM, duration 12.4 seconds”…that means that my heart was only beating 40 beats per minute, that’s¬†bad.¬†I was sleeping, so it should be lower than normal, but not THAT low. Much lower than 40 and you’re talking about not waking up in the morning!¬†

Now check out this one!…

 

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That says that my heart rate got up to 156 at one point! And look at the difference between these lines and the last ones! (Now, it is NORMAL that the lines go up and down like hills, the doctor said that is because something pulled on the EKG lead stuck to me…but how squiggly and irregular those lines are is NOT normal!) Not to mention 156 BPM is not normal either!¬†

 

 

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THAT arrow shows a “ventricular ectopy”…which is defined as¬†Ectopic heartbeats are small changes in an otherwise normal heartbeat that lead to extra or skipped heartbeats…

  • Premature ventricular contractions (PVC)
  • Premature atrial contractions (PAC)”

That’s what I meant when I said that the top part of my heart likes to get impatient and beat before the bottom half is ready.

 

So what all of that means is that 

a) I am developing A-fib (atrial fibrillation- a type of arrhythmia that leads to the heart “quivering” as opposed to beating”). This does not surprise me, since my dad has been diagnosed with a-fib.

b) It most likely explains some of my fatigue because it is very stressful to the body to have the heart doing all of these crazy things.

c) It is very possible that this is keeping me from getting restful sleep, because my heart rate drops so low while I’m sleeping, and then the body over compensates and raises it again…preventing me from staying in REM sleep (when you really get rested).

d) I¬†need¬†a beta blocker (blood pressure medication) to lower my heart rate, but I¬†can’t¬†take one because then my heart rate will go TOO low! Like it could go SO low that it would stop in my sleep! (During this test there were a couple of times where my heart did stop beating, once for 3.4 seconds and once for 4.5 seconds…and I wasn’t on any blood pressure medication!).

So what IS there to do about it?

A pacemaker. Yep, at age 25. 

 

That freaked me out at first, like a lot, but I’m coming to terms with it. The doctor said I do not have to rush, I can chose to have the surgery now or try to wait a few months…but when it comes down to it I will inevitably need it done.

The fact is that I believe that my body will not be able to heal from the Lyme and everything else I have going on while it is working overtime to deal with my heart acting up. Plus, I feel like crap, and this has the potential to really help me feel better. The doctor also said that this will inevitably get worse, and there could be seriously negative outcomes when that happens. 

My LLMD feels that it will get better once I treat the lyme disease, but I disagree, as so does my cardiologist. The cardiologist insists that I would have developed these issues regardless of whether or not I had lyme disease, that just may have sped up the process (since I am a little young to have this condition). So the question is then, do I wait and see if it gets better with lyme treatment, feeling shitty the entire time? Or do I go ahead and have the surgery, to hopefully give my body (and myself) a break from all this nonsense so I can get better?

I did find as I was researching a little that it is possible to have the pacemaker removed later on if I no longer need it…so that makes me feel a lot better about the whole thing.¬†

Still, it’s such a dilemma.¬†

I will say this…right now I am definitely leaning towards surgery sooner rather than later.¬†

 

The other info that came out of this appointment is that the large, essential veins in my legs are “stretched out”…meaning that my blood likes to go down to my feet and not be able to come back up. This makes my legs hurt and feel heavy, my feet turn all shades of blue/purple, and is probably the reason I passed out during my tilt table test. So because of this, I am now doomed to the infamous compression stockings every day for eternity…since there is nothing that can be done to repair the veins or relieve this problem. Yet another thing that makes me feel like shit, and will continue to get worse and worse as my life goes on with no hope of relief. My sole hope lies in some really tight pantyhose and being able to consume as much salt and water as is humanly possible.

I’m doomed.¬†

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Real talk.

It’s really nice to have this blog to pour my thoughts into, especially the thoughts I don’t want to say out loud or bother other people with.

Like this one tonight….

Ready? It’s time for some serious¬†real talk¬†now…

I’m jealous. I’m angry. I’m sad. Mostly I’m just jealous.

I have quite a few¬†friends with lyme disease, some I knew before I was diagnosed and some I met in support groups after. It’s lovely to have people who really understand what I am going through, and have been doing their own research, to talk to and share ideas with.

However, it sucks to watch them get better. Not for them, obviously, I’m overjoyed for¬†them…but for me it sucks.

I have a very close friend; my age range, diagnosed just a few weeks before me, sick for quite a while (but maybe not as sick, or for as long as I have been)…who after pretty close to the same amount of time treating is in the gym working out, going out and partying, feeling¬†better.¬†We see the same doctor, therefore have pretty similar treatment protocols…but he’s better and I’m most definitely¬†NOT.¬†

I’m so extremely happy for him. But damn…

I know, I know…”everyone is different, you can’t compare…blah blah blah”. I don’t care. I care, just not tonight.¬†

I’m sick. It royally fucking sucks. I’m not sure if I’m ever going to get better. So yeah, I’m jealous.

 

I’ve been doing a lot of thinking lately about what I want to do with my life, who I want to be; and while I am excited about where I think my instinct is leading me, I find myself insanely jealous of people who can just make these decisions without having to worry if their brain will be too foggy to pass classes/exams, or their body will be too weak to withstand that internship, or whether they will end up too disabled to¬†be able to actually have a career at all.

That makes me angry.

 

Alright, I’m done. It may be safe to say that the antibiotics induced mood swings are back :[

Check back tomorrow or the next day for a post on a new treatment I am trying tomorrow! :]

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By loving I am staying alive…

“Here I am, rumbling along in my pigpen of emotions, lost on my sofa for eons now, feeling inadequate in so many vital ways. I’ve lost a sense of myself. It’s unnerving to feel adrift and unmoored from the natural grounding forces of my work, marriage and society. Many hours waffle by where I am reeling in confusion… Loving is about all I have left that I can do. Or so it seems. Patiently, I listen to all that goes on in their days. I listen to what is in their hearts and on their minds. This I can do readily and in peace… By loving I am staying alive… If I can’t trust that I’ll get well, if I can’t trust that I’m a valid person by the mere fact of just being me, at least I can trust that I’m still good at loving.” -Out of the Woods, by Katina Makris Pg. 131

I have been reading this book for a month now, and I’m only halfway through. Partly due to how foggy and full of cotton my brain has been lately, I find it almost impossible to read most days and end up just setting the book down and staring at the wall instead; but also partly because it has been a very tough book for me to read.

The book chronicles the authors battle with chronic Lyme disease, and is so well written that it is physically painful for me to read at times. I’ve been there. I’ve felt that. I remember how much that hurts. I feel that way right now. I am all too familiar with that dark, fearful despair. I know that hopelessness.

I feel as though I am feeling every pain and emotion through the pages of the book. Don’t get me wrong, it’s a wonderful book, and I think anyone who knows someone with Lyme disease should read it, as the author does such an amazing job of painting the picture of just how isolating and hopeless and scary this disease is. But be forewarned, if you are ill yourself, it’s tough.

For some reason this passage got to me, in both a happy and a sad way. It says exactly how I feel, only much more eloquently than I could ever say it.

I don’t know who or what I am. I don’t know what I’m doing with my life. I don’t know if I’ll ever get well. I don’t know if I even exist outside of this disease. But I do know that I am good at loving .

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Dear antibiotics; I think we need a break…

It has been 10 weeks now since I was diagnosed with lyme disease and began treatment, so here’s an update.

At the beginning I herxed a little from the antibiotics, very normal albeit unpleasant. It passed quickly each time and wasn’t anything I couldn’t cope with. Then things started falling apart, I started falling apart.

I had bipolar mood swings despite being well “stabilized” on my meds , the worst acne I’ve ever had in my life, the worst insomnia I’ve ever had, pain, blood pooling, heart palpitations, pre-syncope (almost passing out), and major major fatigue, SO much fatigue and weakness that there were many days where I could barely walk! None of these were new symptoms for me, just much much worse than usual or rearing their ugly heads when I hadn’t had to deal with them in a long time.

I’ll admit, I freaked a little. I knew it would be hard, I knew what I was getting into, but this was not it!

So I talked to friends who have been doing this a lot longer than I have, and ran in to my doctor at a fundraiser and mentioned it to her (and showed her, since that day I couldn’t walk more than a few steps at a time!), and every one agreed that I should take a break from my antibiotics. I really didn’t want to, so I debated for a few weeks, until I finally made up my mind to try it.

What convinced me was that I kept saying “if I knew this was herxing I could cope with it a lot better, but I don’t think it is” and a friend finally said “just take a break from the antibiotics, if things get better then you know it’s herxing!”.

So after 11 days off, I think my verdict is this:

Mood swings = herxing

Blood pooling, pre-syncope, palpitations = yet to be determined condition (undergoing a million different tests over the next couple of weeks, so we shall see)

Insomnia = lyme symptom but doesn’t seem to be related to antibiotics. However it does seem to be retreating with help from some supplements my doctor suggested :]

Pain, fatigue, weakness and walking problems = typical ME crap, perhaps maybe made a little worse by herxing. I haven’t had any trouble walking since being off of antibiotics, but it comes and goes, so that’s inconclusive. :/

Over the days off of antibiotics, my pain was off the charts…I find that an interesting tidbit of info, that I’m not really sure what it means yet, but after 2 days back ON antibiotics it is not any better. :[

Interesting as all of that is, I still don’t really have an answer; and now I’m scared starting antibiotics again that it’s only a matter of time before I’m getting worse again.

I have learned over the many years that I have been sick, and especially recently, to trust my instincts. I know my body, better than anyone else, and when my instincts talk I listen. Right now, my instincts are screaming that¬†something isn’t right…I just have to figure out what it is.

There is a missing puzzle piece, or maybe several, and until I figure it out I think I am going to continue to have problems.

I am so tired of worrying about this.

 

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Pity party time

I don’t do this often, but tonight I am going to let myself.

This sucks.

I’m sick of feeling this way.
I’m sick of spending my evenings boiling coffee (see here¬†for an explanation of that statement) and taking pills instead of out doing fun things like people my age should be.
I’m sick of spending more time in doctors offices than I do with my family (my ex husband used to hate that).
I’m sick of the pain. So much pain I don’t have words to describe it. The best I can do is brain numbing, gut wrenching, cant think about anything else, pain. It makes me want to cry, and throw up, and lay down right where i am and curl up in the fetal position and die. <—- I’m sick of that.
I’m sick of my body tic-ing uncontrollably, at the most inconvenient times.
I’m sick of worrying.
I’m sick of being scared to go on with my life; sick of doubting my abilities to do what I want to do.

I’m just sick, and tired; and sick and tired of it all.

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Birthdays and validation

So yesterday was my birthday; I didn’t do anything super major, but it was still a nice weekend.¬†

Saturday I went to the beach, regardless of a little rain and a lot of clouds. My friend and I had a nice lunch, laid on the sand and talked, got some sun in spite of all the clouds, and then had a quick dinner on the way home. She also brought me a lovely bunch of flowers, a gift certificate to our favorite gluten free/vegan bakery, a very sweet card, and a cute unique gift. See…

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This adorable box had a note in it that said “The legend of the Dreambox suggests writing down your fondest dream, greatest desire, strongest wish on a small piece of paper, and placing it beside your bed. Every evening as you retire, and every morning as you rise, hold your Dreambox and think on your dream, believing with all your heart that it is so. Legend has it, if done faithfully…your dream will come true.”

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Isn’t that sweet?¬†

Many sweet friends also wished me happy birthday from cyberspace…including this e-card that made me smile…

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Then last night I had coffee with a wonderful friend who I, ironically, went to high school with but wasn’t close to then, and who recently has become one of my closest friends after we ran into each other on an online lyme disease support group. It was wonderful to spend time with her as we are both usually to sick or busy to get together.

She gave me probably the best birthday present anyone could have given me…she¬†heard¬†me. We talked for hours as we drank our coffee, and in the course of this conversation I told her how I’ve been feeling lately; as though something is very wrong, that I am not on the right path with my health and my gut instincts are screaming at me to fix it, and quick! But that I have no idea HOW to fix it. Something I have said to several other people recently and gotten answers like “you’re supposed to feel worse before you get better”, and “it’s just herxing, it’s normal”, etc.

However, she simply looked at me and said “I totally get it“.

I can’t explain how nice it was to simply have someone validate how I am feeling, instead of telling me that it’s no big deal, or normal, or I’m freaking out over nothing (which is what I feel like I’ve been hearing, albeit in different words).

Just to have someone say “I get it. I’ve been there too, I am there right now too. You will figure this out. You are strong, and smart, and you know your body. If you say something is wrong,¬†then something is wrong.”…there are no words for how much that helps me right now. ‚̧

There are only 3 days until my dad gets here; he is only coming for like 2 days, and just to help me move, but regardless I can’t wait to see him. So when he gets here we will have a family birthday dinner (minus my mom who isn’t coming ūüė¶ ) with gluten free/vegan cupcakes for dessert of course! ūüôā¬†

All in all, a satisfactory birthday…although I won’t lie, it makes me sad. I couldn’t help thinking of how my husband and I would have been celebrating together, especially since he didn’t even bother to text me “happy birthday”. I couldn’t help missing the family birthday dinners we used to have before my parents moved away. I couldn’t help wishing my best friend wasn’t 2 hours away. I couldn’t help feeling angry/let down that my other “best friend” who has been talking for months about planning something to celebrate my birthday, chose to spend the weekend with her boyfriend instead, and simply sent me a text message last night. I couldn’t help feeling sad over where I am in life, because it is so not where I wanted to be at 25.¬†

But I am incredibly grateful for the wonderful friends who did make my birthday special (even if they weren’t the friends I expected), I am a lucky girl. ‚̧

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New patient paperwork fun…

As I am sure a lot of you can sympathize with…I absolutely despise new patient paperwork. I can’t tell you how many times I have filled these stupid things out; it always takes me forever and completely wears out my right hand/arm. Not to mention, there’s nothing like have to go through pages of check boxes and mark everything that’s wrong with you to make a girl feel like she’s dying or something. I don’t have the energy to count, but I’m pretty sure I checked more “yes” boxes than “no” boxes this time around. :/¬†

Note: I marked “yes” for more lyme disease symptoms today than I did before starting treatment…isn’t that lovely.¬†Image

 

And this isn’t even including the other 6 pages of biographical info and ridiculous amounts of family history I just filled out (I mean, who seriously knows¬†all¬†of the medical problems their grandparents have/had?!)¬†

And don’t even get me started on the medication list!! Mine takes a whole sheet of paper, front and back now!¬†

At least this doctor’s office is thorough…let’s hope they are that thorough when it comes to running diagnostic tests!¬†

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The truth is…

People like to tell me that I’m strong, brave, inspiring…it means the world to me, really, but I just don’t believe it. I’m not anything special, I’m just here doing what anyone else would do in my shoes…the best I can do with what I’ve been given.¬†

And the truth is, I’m really not strong, or brave, and I’m definitely not inspiring.¬†

I’m scared, and I’m weak; I’m sad, and I’m alone…and I’m done.¬†

You know what I did tonight? I sat in the shower, after a quick 5 minute shower done sitting in a shower chair, and cried for a longggg time because I couldn’t get out. I couldn’t move, I couldn’t breathe, I could barely even cry. I felt like I was dying, and I really wished I was.

I’m not sure why I’m using past tense here…I still feel all of those ways.¬†

It took me over an hour to get out of the shower, dressed, teeth brushed, pills taken, and in to bed. Tasks that should take me like 10 minutes total. 

Now I’m laying here in bed, barely able to move more than my fingers (thank goodness I can still move those!), in agonizing pain. It hurts to breathe, it hurts to think, it hurts to be alive. My legs feel like they are literally dead (happens every time I lay down lately, sounds fun right?), my head is pounding, my face feels like someone beat it to a pulp, and my back aches so badly I have no words to describe it.¬†

Yet this morning? I was fine. I made a bunch of phone calls, checked things off my to-do list, had a good day at work, was even in a fairly good mood…and then I crashed.¬†

I want off this roller coaster ride of¬†“ok”¬†days and horrible days.¬†

I don’t want to feel like this.¬†

I don’t want to do this anymore.¬†

See? Told you. 

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Yep, definitely crazy

So you know a while ago when I said here¬†that I was feeling down and melancholy, but that it wasn’t exactly like a bipolar mood swing? I take it back. It’s exactly like a bipolar mood swing. I’m sure now because now I’m having manic episodes.¬†¬†

Perfect. Just what I needed.

Before starting treatment for lyme I was 99% perfectly managed on my mood stabilizers. I had only one or two, very mild, mood swings every few months. Now? Every day is a different mood, some days more than one. 

Friday afternoon I was happy…unfortunately. That’s one of the worst things about being bipolar, I¬†can never just be¬†happy…I’m¬†always afraid it’s the beginning of a manic episode. Friday, it was. I got happier, and happier, until I was shaking with energy and bouncing off the walls (almost literally). Driving too fast, screaming at the top of my lungs, ready to go run an iron man marathon even though less than an hour before¬†I was exhausted and in a ton of pain. I couldn’t think, didn’t want to think, my mind was going a hundred miles an hour. I needed to DO something, scream, run, jump off a bridge…anything¬†to make it stop.¬†

It was the worst manic episode I have had in 5 years, since I started taking the mood stabilizer I’m on now (probably longer than that!). Luckily a phone call to my mom helped me ride it out until it passed, or I probably would have ended up in the hospital.¬†

*Note: I have the best mom ever. She gets random phone calls from me every other day or so now, because I’m in some weird mood, and she just talks it out with me until it’s over. She keeps me sane.¬†

I hate this. I hate this. I hate this.

There is a reason I may be the most med compliant bipolar patient you will ever meet, it’s because I¬†hate¬†feeling this way. I hate how when I am symptomatic, everything that is good about who I am is gone.¬†

I have never encountered a physical symptom, pain level, or issue that I couldn’t cope with…but I cannot, will not, put up with feeling like this.¬†

Now, what to do about it? Ugh. 

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