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One of the worst aspects of Lyme is the setbacks. Lyme is a disease that keeps on giving – one new symptom after another.

I’ve been quiet for so long on this blog, but I’ve thought about it and you who read it, nearly every week! I spent a long time this afternoon going back into my archives and rereading many of my posts. I’ve had so many up’s & down’s while treating this disease, I’d forgotten most of them. Perhaps I chose to forget them, who knows.

I think it’s time now for me to post an update on my progress and my life (or lack thereof) since it’s been so long since I have.

2011 has not been the best year for me, medically speaking. It feels like one big experiment-gone-wrong. I don’t remember a time this year that I fell well, really well. And it’s June already. Half of the year is gone!

I’m going to be honest. I feel worse now that I did at this point last year. Last summer I was in much better shape! I was excited and felt like I was finally on the right track in my treatment. Now fast-forward to this spring… I’m having a repeat of spring 2009. I’m going through the exact same symptoms, diagnoses, and experiences. I feel as though I’m reliving this part of my treatment.

Today is day 36 of a life-consuming pressure headache. At times, I’ve become non-functioning because of the pain of this headache. Some of you may remember I went through this in 2009 as well. My POTS (Postural Orthostatic Tachycardia Syndrome) is back with a vengeance, and my fatigue is insane. I don’t know about you, but I live on my couch. We have a symbiotic relationship.

Since I was following a similar pattern to 2009 we immediately thought of my eyes. Were my optic nerves swollen again? So in I went to be checked out. After many weeks of patience, and follow-ups, I was told on Friday that I need another spinal tap. I had 3 in 2009. I was really, really hoping those would be enough for a lifetime! I’m scheduled to have my 4th done this Thursday morning. Better sooner rather than later. I’ll know the results sooner this way, and hopefully have some answers. My neuro-opthamologist is LL and is concerned that I may be experiencing pseudotumor cerebri, a condition where the brain behaves as if there is a tumor present, but there is none. The number one symptom of this is unexplained increased intracranial pressure, which is what the spinal tap is for on Thursday.

However, I don’t know what to wish for. Do I want to have pseudotumor cerebri – another medical condition that is reversible, but needs medication and/or invasive assistance? Or do I wish for a normal, low pressure from the spinal tap and therefore have all of this be attributed to random Lyme-related symptoms? I just don’t know.

In addition to that development, I’m now completely off of my Lyme protocol. My LLMD and opthamologist told me to back off for now until things calm down. I was put on beta blockers a few weeks ago to calm my rapid heart rate and I’ll be referred to a cardiologist sometime this summer. I think the beta blockers have helped the POTS a bit and the fatigue, thankfully! My LLMD believes that m adrenals are a problem again and I’m most likely iron-deficient. I had a slew of blood tests done on Friday and I’ll learn more in a few weeks.

I’m afraid my LLMD is feeling overwhelmed by me. I’m not getting any better yet, and she’s afraid of making me worse. I’m taking this all one day at a time, but I really am beginning to feel overwhelmed myself!

I’ll be back soon. I’ve missed you all!

Wishing you health & healing,

molly

 

Every day is a journey filled with twists and turns. Every day, if you smile, you will feel alive, my son. — Santosh Kalwar

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I’ve given up on the idea of predictability. It’s a myth, a scam, a relentless tease. At least, it is when you’re living life with Lyme. I’m not trying for the “half glass empty” approach, or the storm cloud affect. No I promise I’m not. I’m as hopeful as ever. I’m simply accepting reality.

I’ve known this for a long time. If this disease had an owner’s manual it would be remiss to omit it. But sometimes Lyme can just punch you in the stomach. Literally.

My last post was a celebratory one about the tilt table test results. At the time, I said this:

I was also having some horrible abdominal pain. My entire abdomen is swollen and painful to the touch right now. Yuck. I wish my doctor appointment was sooner!

Let’s see… that was on Friday the 22nd. A week later (last Friday) I was back at the hospital again. But this time I was getting an abdominal ultrasound.

The pain, and swelling, increased each day until my appointment with my LLMD on Wednesday. By that time the pain was literally in my entire abdomen. But it had localized with the most severe pains coming from underneath my ribcage on my left side. Yep, my spleen. Great!

I was measuring the swelling. At one point it was almost 3 inches more than my normal measurement. 3 inches! It stayed pretty steady around an increase of 2 inches for the week, however. The pain was dull, shooting, stabbing, burning – you name it. Sometimes I couldn’t even sit up straight.

My LLMD felt around (painfully!) and was worried since she could feel the tip of the spleen sticking out from the ribcage. I should mention that she had checked in early December and didn’t feel a thing. So, off I went for a blood draw and an ultrasound appointment.

It wasn’t too bad. The swelling had (of course) gone down since Wednesday by Friday. But the lady was so nice, and so quick about it. My mom and I grabbed a cup of tea at the coffee shop on the way out, and were home just as the sun had fully risen. Why it had to be that early I have no idea. I’m a person who doesn’t function until noon on a good day!

Anyway, it was Friday so we put a few calls into the office to make sure my Doctor got the results before the weekend, and surprisingly enough she called back with results in a few hours.

Normal. Let me say that again, louder: NORMAL.

When my mom told me I think my reaction was, “WHAT?!”

Something was, and is, seriously wrong here! How can everything look normal?! Ah. That is one of the great Lyme mysteries. We all ponder it, turn it over in our minds, and eventually fume about it.

My LLMD believes that my entire abdomen is enflamed and irritated from organs to intestines. My are nerves sending out haywire responses and my body doesn’t know what to do with them. Funny, neither do I.

So, I’m still in pain. It still hurts to touch my abdomen, and doing so causes a wave of nausea. The pain hasn’t let up since last week. I’ve lost my appetite almost completely. And, I’ve given up tracking the swollen ups and downs.

I’ve accepted that this is a phase in my treatment. Granted, an unexpected one and yes, unpredictable. But I’m not happy about it. Herx or med reaction, I don’t know. I only know that I haven’t lost all hope that it’ll be better when I wake up in the morning.

Much Lymie <3, molly

 

“It’s something unpredictable, but in the end is right.” ~ Green Day

 

An update from what transpired during the rest of my LLMD appointment will be coming this week. Mepron, oh Mepron!

I survived! My friends, I tilted and jilted and never toppled! (Sorry, I couldn’t resist…)

The tilt table test was (mostly) all bark and no bite.

My results were negative and the doctor performing the test said my responses were normal! Imagine that, something normal? Needless to say I didn’t argue the fact. He was a slightly condescending doctor – I have a feeling he doesn’t often perform these tests on 17 year-olds. Just a hunch, considering he asked if a “young lady” my age was still in high school these days.

I was hooked up to more sensors and wires and I could count, and was given IV fluids throughout the test. The nurse was awesome. I had an IV in under 5 minutes! Seriously, can I take her home and keep her? And, moving on, I had blood pressure cuffs on both arms, a device reading my pulse hooked onto my wrist, and was strapped onto the special table. It was actually really cool to see how all of the things worked. The nurses were laughing at me at one point when I couldn’t help but exclaim – “Cool!”.

I make no excuses. I’m really very easily amused.

Throughout the test they had to keep adjusting the pulse device. I don’t think it was working properly. And the machine was taking my blood pressure constantly! Or, what felt like constantly. I’m sure I’m not the only one here who has had to bite their lip when the cuff is tightened too much. Ouch! I’m often painful to the touch. My arms, shoulders, and neck are a mess today. After 20 minutes or so, they stood me up. And – not much happened! I was a little dizzier, a little more nauseous, and slightly lightheaded but it wasn’t too far away from normal for me.

After a while they sprayed something (I’ve already forgotten what) under my tongue to make my heart speed up as if adrenaline was kicking in. That didn’t make too much of a difference. I felt horrible though. Suddenly I was weak in the knees. It was taking all I could manage to keep my knees from buckling. My eye lids were drooping. My head felt so foggy. It was bizarre. But, of course, I couldn’t think of how to explain any of this. All I could say was “I’m so tired.”. I think they assumed it was because it was so early in the morning.

Nope.

Soon they tilted me back down to a sitting position and that was when the fun began. They assumed that things would run it’s course now and nothing else would happen. Why am I always surprising doctors? As soon as I laid down and closed me eyes I was gone. I was suddenly so dizzy, and I said so. They rushed at the machines. It soon passed, but it wasn’t fun. I’m guessing that it had more to do with the fact that I closed my eyes after all the movement than with POTS though. Closing my eyes always makes me swim a little – and I’m always more dizzy. Oh well.

So, long story short, no POTS! We’re chalking all the excess symptoms up to Lyme, I guess. And I do have a vestibular disorder to boot. So it’s not really surprising. It’ll be interesting to hear what my doctor says next week. She’ll have the results herself by then.

I spent the rest of the afternoon watching movies, snacking on popcorn, and sipping tea with my mom. Nothing like Joan Crawford to distract a girl. And I’d forgotten how much I loved the movie “The Bone Collector”! Wow!

I was dizzy, nauseous, and lightheaded. But yesterday seemed to be a hotbed of other suspicious Lyme symptoms. I was also having some horrible abdominal pain. My entire abdomen is swollen and painful to the touch right now. Yuck. I wish my doctor appointment was sooner!

However, I think I’ve caught the worst of the recovery phase today. I’m not feeling well at all today. Sigh. At least I planned for this. I’m sad that I could anticipate this, but grateful that I’m able to know my body as well as I do.

Thank you, thank you for all of your prayers and thoughts this week!

Still feeling the love, molly

Be of good cheer. Do not think of today’s failures, but of the success that may come tomorrow. You have set yourselves a difficult task, but you will succeed if you persevere; and you will find a joy in overcoming obstacles. ~ Helen Keller

 

To wish to be well is part of becoming well

Have you ever just stopped, taken a breath, and wondered what just happened? Yeah, I do that a lot. My week has been one thing after another, and I’m stopping to take a breath, and I’m thinking to myself: “I’m ok. I made it through. I did it!” And there’s nothing more self-satisfying in my mind than hearing myself think that.

 

Let me summarize the past few days for you. On Tuesday I had an LP, a spinal tap. I was about as prepared as I could have been. I’d had the last one so recently that all the doctors and nurses remembered me! The procedure itself wasn’t too bad. It was actually shorter and less painful than my first one. So I’m incredibly thankful for that, thinking back on it. The doctor was very nice, and let me know exactly what he was doing as he was doing it. I think he remembered I was a bit of a talker :) When I asked about the opening pressure {of my spinal fluid} he said that it was slightly higher than before. So, of course then I wasn’t too happy, and slightly less grateful {to be honest}. Unfortunately that was exactly what my doctor had been worried about, and why I was having the test again in the first place.

 

I don’t have an exact number, or measurement, but when my doctor called us later that afternoon she explained that a normal pressure is about 100 or below. Mine was above 300. They were concerned, but not overly. At least, I hope not. She promised to talk to my LLMD about it, and get back to use. Well my LLMD is about the hardest doctor to get a hold of that you could imagine. So yesterday I was put on a new medication to bring the pressure down. I’ll be on that until next week, or longer. We don’t know yet.

 

But, speaking of next week that oh so nicely brings me to my next tidbit of news. After my eye specialist finally got in touch with my LLMD they talked things over, and called my parents this morning. I woke up with the wonderful news. First, they would like me to be seen at the Mayo clinic as soon as possible, maybe as early as next week, to rule out any other possible causes other than Lyme disease complications. I think Mayo is one of the few hospitals in the metro area that I haven’t been to in the last 6 years! Please keep me in your thoughts as I move forward with the referral. My LLMD has been very adamant that they will not be accepting of the Lyme diagnosis.  My parents and I are viewing this as an appointment to rule out  all other options, that’s all.

 

Then the second news I received this morning, I was to be scheduled for an emergency MRV procedure this afternoon. The purpose of that was to detect any blood clots in my brain, if they were there. Good news, the test came back negative. So no blood clots!

 

That procedure went well also. It was a long wait, almost 2 hours for what turned out to be only 30 minutes in the machine. It was the first time that I can remember ever having to have an IV placed though. That took them a while. My veins are absolutely horrible, it takes try after try to get a vein! But, after a lot of work and a heating pack the tech got it in the very first stick. Needless to say, I was impressed! They used the IV to inject contrast for part of the procedure. This was much more enjoyable than my MRI last month though, let me tell you. This time they had music for me to listen to, and the pieces holding my head didn’t fall out of place! the doctor was wonderful, so nice.

 

Overall, not too bad. It would have been better if I hadn’t gone in there with what we think might have been another spinal headache. But tonight I’m feeling better. Just very, very tired and a bit sore. Fatigued seems like such an overused word in my world, but it does sum it up quite nicely.

 

I’m excited however for this weekend. Tomorrow my parents, Wilson {my puppy!}, and I are packing up the van and heading out to Milwaukee. My big brother Chris is graduating from college this weekend, and we have a whole slew of festivities planned!

 

I’ll update when I can.

Peace and healing, molly

 

“To wish to be well is part of becoming well.” ~ Seneca

 

Photo: The view looking up our hill at my cabin in Northern WI.

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