I never could read a map

ParentsPstcrd_081509.jpg, originally uploaded by Pedestrian Typography.

I saw this today, and it hit a cord with me. This has got to be the road-map for Lyme treatment, no? I mean… we start out “here” and end up “there” after so many bumps, curves, twists and turns that we come out not knowing which way is up but so glad that we made the journey. Or, at least, I assume that’s how we’ve got to come out of this crazy trip.

This makes me smile. And then heave a huge sigh. But, at least according to this map there is an end destination for us all. That’s all I need to know, really. I’ll take it one day at a time, knowing that there is, indeed, an end.

Rain, Rain, Go Away

… Come again another day! Or, you know, not. That’s good too. My mom and I commiserated this morning over our rain/weather-induced pain. I just hurt. I ache. At times, I even throb. My head feels like it could pop right off at any moment from the pressure. My energy levels are spent. Today is one of those days that I was hoping to get a lot done, and I haven’t yet accepted the fact that most of it won’t happen. Instead I just want to make my new favorite popcorn {black pepper!} and curl up in a pile of blankets with my new DVD set of Hitchcock films. That sounds nice, doesn’t it? Days filled with dark, stormy, wet weather and high humidity levels are energy-sucking days. I don’t function well in weather like this. Yesterday I was surprised how “normal” I felt in spite of the tornado weather and unrelenting rain fall. Today, I’m taking the beating.

 

And do you know what the kicker to the rain is? The sound of the constant water falling to the street in sheets, hitting the windows, and over-flowing from the rain barrel outside the window is actually making me have to pee even more! Now not only is my inflamed gut pushing down on my poor bladder, but the rain is like a mental trigger each time I stop to enjoy the tranquility of the sounds! Let’s hope I don’t pee my pants from laughing at this little irony.

 

To fully distract myself I’ll move on to another subject. Yesterday I shamelessly dangled a hint of my good news in front of your eyes. For those, like me, who might need a reminder: I think that’s all I can update for now. I’ve got some friends waiting for me :)  I’ll finish it up soon, no worries! But I’ll give a hint: I’ve got great news from my eye specialist!

 

Are you ready? I won’t tease you anymore! I invite you to help me celebrate:

 

I’m absolutely ecstatic to announce that yesterday we found out that my eyes are 100% back to normal!!! No more hemorrhages, no more inflammation, no more anything! No more signs of any increased intracranial pressure whatsoever! My wait in the waiting room was longer than the time I spent in my appointment. It was in and out, quick and easy, painless and full of only good news! I would go to the doctor every day just to hear only news of good health. Wouldn’t you? It was a nice, refreshing change for me. And I’m relieved! After looking at my eyes yesterday my doctor said, “You really had me worried for a while there!”.

 

Saying that this is good news is an understatement. I’ve been through so much with this since February. I’m ready for this to be over. I’m ready to get back on track in treating my disease! After an ER visit, 3 eye doctors in addition to my LLMD, and MRI and a MRV, 3 spinal taps, and a visit to the Mayo Clinic I’m actually done! I can hardly believe it. All those months of pain, of confusion, of worry and test, after test are resolved. And to think it was all caused by just a month of Doxycycline in January and was exasperated by a rare side-affect of months of Levaquin. No one thought it could be the antibiotics because I had stopped the Doxy so long before my symptoms occurred and Levaquin wasn’t even considered to be the cause of the problem. No one expected that it would take me almost a full 7 months to fully recover if antibiotics were to blame. But, turns out they were and it did take me that long to come to the place where I’m at now.

 

I’m so incredibly thankful for all of those who helped me get through this! My parents and my family were amazing. They truly are the pillars of my support system, and my wonderful friends were there for me at every twist and turn down that long road. My doctors however, deserve so much credit. Without my LLMD’s attention to detail in this situation I could have undergone surgery for a shunt to release the pressure. Thank God I didn’t go down that route needlessly. And thank you to all of you who read this blog. Knowing that you were here and listening to me as I traversed this obstacle made all the difference.

 

I’m slowing dosing down on my Diamox, and in a month I’ll be completely off of it. I can’t wait! And in 2 months I’ll see my eye specialist again just to check on how my body is handing being off of the medication.

 

Peace and healing, molly

 

“If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.” ~ Rabbi Harold Kushner

It’s Raining, It’s Pouring…

Seems like a good time for an update! It’s absolutely pouring sheets outside and as I pondered the things I could be doing right now, watching the rain pour down on the street below from my picture window and writing up an update seemed high on my list. Higher than doing something about that pile of dishes in the kitchen, or attacking my chemistry homework, or even {gasp!”} reading. And, with this weather I’m sure you’ve guessed that my energy is in short supply today. Better safe than sorry. In truth, I’m saving my energy today because in a few hours I’m meeting up with a few of my best friends to spend some quality chilling out time before school begins again. Don’t even ask when school starts for me either, because I have no clue. I like it that way! Summer might, just might, last a few days longer.

 

I last wrote before going in for my monthly LLMD visit. At that point, and still, I was having horrible abdominal pains and was getting sick after eating anything, even gluten-free foods. Things have been a mess! So, she checked my spleen, making sure it wasn’t a problem there. And she came to the conclusion that I assumed she would – digestive issues, nothing more. Good news, and bad. I mean, a girl’s gotta eat! She explained it to me saying that my gut and intestines are so inflamed and swollen right now that anything will set them off. We need to get this straightened out! And when I said that I was having highly increased urination too, she said that she would expect that from my situation. Not only am I still on a diuretic medication but my inflamed gut is pressing down on my bladder making me have to pee almost on the hour! And come on, that’s just annoying.

 

So doctor’s orders: I’m now taking L-glutamine {an amino acid} before breakfast and dinner {1 gram daily}, and digestive enzymes with each meal. L- glutamine is used by some Celiacs to promote healing of the intestines and villi. And as for the digestive enzymes we actually found a brand that carries a special formulation for those can’t handle gluten. It helps ease discomfort when small amounts of hidden gluten are digested, and it too will promote healing in my inflamed abdomen. I’ve only been on these a few days, so we’ll see how they work out. I’m hoping they really will because at this point I’m still getting sick every time I eat.

 

In other LLMD news, I’ll be starting a few new herbal tinctures that have shown great success when treating Lyme. One, Cumanda is used to treat both Lyme and co-infections. So it’ll be a good fit for me, since my Bartonella treatment didn’t sit too well with my body. It’s an anti-bacterial/fungal/viral/parasitic and anti-inflammatory on top of it! The second is Pinella, is used to eliminate toxins from the brain and central nervous system. And, *BONUS* it treats brain fog!! YES! Please! I’ll even eat the cherry and get sick if I can have some mental clarity for school in September!

 

I’m also lined up to get my co-infection panel done in the coming weeks. Separate infections other than Lyme can be spread by ticks, and when a person is infected with more than Lyme alone it makes treatment more difficult. I’m being treated for suspected Bartonella, on the basis of several of my common symptoms and the rash that is telling of this particular infection. I have the rash on both hips, my chest, and formerly on my knees. But, I’ve never had a blood test for Bartonella. My LLMD also suspects that I could have other co-infections. If I do, or if I don’t, it’s just best to check and be sure. I’ll get the blood test 2 or 3 days after I start the Cumanda. That way we can stir up my immune system response a bit before testing.

 

The results are confusing though. I don’t want to have too much on my plate and be overwhelmed with yet another infection to treat. But, I also want to find any and all possible reasons for my being so sick and treat them! So I’m in some ways hoping for positive test results. There’s also the common false-negative to worry about. So if things come up positive, we know I’ve got it. If they all come up negative, there’s still that questions of doubt. Screwed up, right? I know. We desperately need more accurate tests.

 

I think that’s all I can update for now. I’ve got some friends waiting for me :)  I’ll finish it up soon, no worries! But I’ll give a hint: I’ve got great news from my eye specialist!

 

Peace and healing, molly

“The greatest healing therapy is friendship and love.” ~ Hubert H. Humphrey

*7 Months* {Give, or Take}

There’s so much to say that I hardly know where to start. It’s been weeks since I felt well enough to post, and as usual I missed it. It’s so incredibly frustrating for me when I sit down to write and not an un-jumbled thought comes into my mind. So bear with me here as I attempt to shed some light on the past few weeks!

 

First, I’m so excited to tell you that my eye specialist gave us some AWESOME news in the middle of last month! I know, shame on me for forgetting to mention it. If it’s any consolation it was mentioned in my Twitter stream. Anyway, my eyes are almost 100% better!! No more Optic Nerve inflammation or ICP for me! Turns out that taking me off both the Doxy and recently the Levaquin did the trick! My dosages of Diamox which I’ve been on for months to keep a handle on the side-affects of ICP and lessen the raised levels have been cut in half. I have a follow-up appointment with the doctor in a few weeks where if things are still looking up the Diamox will be cut out of my treatment regimen. If I could jump without getting too dizzy, I’d jump for joy!

 

My appointment with my LLMD was around the same time last month. I handed her a list of my worst symptoms, and we agreed that I’d been herxing since starting back on antibiotics roughly a month before. From my own observations since then, I herxed constantly for around 6 weeks. A few of my biggest complaints were horrible brain fog, fatigue, pain, nausea and uncontrollable sudden acne breakouts.

 

For the nausea she explained that it was most likely being caused by toxins in my stomach/gut and no medications she gave me would help to a great extent. Great. So she suggested trying Reed’s Ginger Brew, a ginger ale with up to 26 grams of ginger jam-packed into a bottle. It’s helping! It seems to calm my stomach, wish it would give me my appetite back too though.

 

My brain fog she chalked up to toxins as well. In her words, “we’re killing things up there!”. Lovely, no? The phrase Toxic Overload comes to my mind. The acne is being caused by toxins too, trying to get out of my body through the skin. She recommended trying some herbal tinctures that other patients of hers were showing great results with. Our hopes are that they’ll reduce the fogginess and confusion and curb the daily headaches that have come back full-force. I haven’t ordered them yet, but we’re looking into them. I, of course, would be willing to give them a shot. Once we do get them, I’ll post their names.

 

My parents and I are also looking into investing in getting me a co-infection panel from IGeneX. My LLMD has been hinting at it for months, but the cost has always been a deterrent. If we knew that the test would for sure give us results, then of course it would be a no-brainer. But as it is the tests can’t guaranty that every infection will be discovered. Many false negatives show up. It’s up to the doctor to interpret. We suspect that I have Bartonella, but Babesia is also a possibility. Of course, it would be much better if I didn’t have any co-infections! But if I have them, it’s best to know so we can progress with treatment for them. Our plans are to get the panel later this month since I have another appointment coming up next week, I believe.

 

I’ve had some new symptoms appear lately. One of the most interesting is knee pain, for the very first time in my life! Knee pain and Lyme are “tied together” by the traditional definition of Lyme Disease. So I’m not sure what to make of it. I’m also having a lot of chest pains, and abdominal pain. My foot pain comes and goes, after not being  a problem for months after Bartonella treatment. But most annoying and troublesome of all has been my growing food sensitivities.

 

I posted a few days ago that I had been “contaminated” after eating out. That means that gluten was somehow introduced into the dish, and my sensitive digestive tract didn’t like it one bit. I had a lovely gluten-free meal at Axel’s Bonfire last week with friends. I carefully questioned the waitress, and felt fine after eating it. Only to get slightly sick the next day. I didn’t know if it was from gluten contamination, the ice cream I’d eaten as desert, or from the MiraLAX I’d been taking for a week since finding out that my fiber supplement had gluten in. I voted MiraLAX and forgot about it. Then a few days later, after stopping the MiraLAX, I went out to eat for lunch with my mom. We carefully instructed the deli on how to prepare our salads, grabbed some ice tea, and a bag of potato chips each. A few hours later, we both knew we had a problem. By the time we had gotten home the pain was horrible. I spent a few hours in the bathroom that night and I’m still recovering. I feel so much better than that night, but I still get a stomach ache from eating just about anything at this point. Gluten-free or not, food has not been my friend lately.

 

Our best idea has been to get me tested for Celiac Disease. My mom was tested and was negative. But there’s still a possibility I have it. The trouble is, I’ve been almost completely gluten-free for months and to test for celiac you must be eating wheat products for at least a month beforehand. I’m not willing to do that at this point. It’s not worth it! So we’ll see what my LLMD has to say, but we desperately need some help with all these intolerances at my house now. Gluten, dairy, soy, eggs, and nuts if you count both my mom and I. Things are getting worse, what do we do? Between the nausea and the bloated discomfort I know is coming, eating is a challenge these days!

 

I’d like to end this post with something positive however. I’ve had a taste of normality folks, and it was beautiful. I’m not sure how I managed it, but last week I spent day, after day, with friends and family doing things I wouldn’t have been able to do only a week earlier. I had an absolute blast! It must have been 4 or 5 days in a row of eating out, playing in the park, movies, sleepovers, and shopping. My heart is brimming with enthusiasm over it. It’s all a blur in my mind, but the memories are sweet.

 

Peace and healing, molly

 

“The best thing about the future is that it comes one day at a time.” – Abraham Lincoln

Detoxing and Adjusting to Living Gluten-Free {Still!}

Lately, I’ve been working to make sure and do what’s best for me right now, in the moment, as it happens. Most of my minutes however, seem planned out. I wake up, and have supplements and probiotics to take. Then I have to wait at least an hour until I can eat breakfast. I read the paper, wander out to my raspberry patch to pick a few berries, check my Facebook and Twitter. You know, all the normal things. Then suddenly I have to think about when I’m allowed to take my vitamins, and my afternoon medications, and my early evening medications, and then my nightly dose of fiber, and then, my night medications. It’s a lot. It’s really a lot. Add onto that summer school and you have one tired girl. It feels as if moment after moment I have something, somewhere, that I should be doing, or taking.

 

One of those things is my detox baths. I do like taking them. The Epsom salt in them makes the steaming hot water not hurt my muscles, which used to be the case. I couldn’t take baths for years because the hot water would make me feel horrible. I’ve tried to make them as enjoyable as possible. I have a plethora of essential oils to choose from and add depending on my mood or how I’m feeling. So in the winter these baths are wonderful. Quite pleasant. Extremely tiring and exhausting, yes; but worth the effort to detox my body. I can tell when I need it. However…

 

Piping hot Epsom salt detox baths are fine in the freezing Minnesota winter months, but in the summer heat I’m strangely not drawn to them. I wonder, “Where’s my motivation?”. And then I realize, “Oh yeah; The motivation is not feeling like crap any more!”. So I go run a bath, sweat it up, and don’t accomplish much of anything for the rest of the day. Yeah, sounds about right.

 

I’m exhausted now, and I didn’t even have time for a bath today. Instead my mom and I took a trip out to a local natural foods store to check out their Gluten-free options. We went in searching for bulk flours and a loaf of bread. A few hours and a cart of of Gluten-free goodies later, we heard a voice. Turned out to be the loudspeaker, thank God, announcing that the sale of 10% off all your Gluten-free food items would be over in 10 minutes. Needless to say, we dropped the search for a  bread mix and ran to the register!

 

In that store I was in heaven! All Gluten-free items were marked with red tags on the shelf. Do you know how much simpler that made our shopping? They had so many options for us to choose over we were almost overwhelmed. Perhaps the most thrilling is their selection of bulk flours. So much more inexpensive than we’re used to paying! We found noodles, pizza crusts, bread sticks, pretzels, oatmeal, and goat milk yogurt! And so much more. No question about it – we’ll be going back! We must have been there a few hours. Sure, we’ve seen a lot of these things before. But this time we given options, so many more ideas, products, and foods that we could trust.

 

So what did we do when we got home? My mom and I dug up all the empty jars in the basement and labeled our new bulk flours, rice, and noodles. They all have red tags on them clearly stating that they’re Gluten-free with the cooking directions right there. Every time I open that cabinet I just get a smile on my face. Our food, and my dad’s food, all arranged neat and tidy. I need to be able to see my food, or I’ll forget it’s there. Honestly!  I also cleared out all our kitchen food cabinets. I rearranged, threw out, and emptied the contents. One shelf is now only and completely Gluten-free. There’s no crumbs in it and no confusion involved. I know that I can eat every single thing on that shelf! I feel so liberated!

 

Liberated and dead tired that is. I probably did altogether too much stuff today, but it made me happy at the time. I think that must count for something. I believe that I am in the middle of a herx right now though. I’m now on my third week of my newest treatment plan. One week on antibiotics, one week off, and this week I’ve gone back on again. It’s been hard, I won’t lie. My daily headaches are back, as well at the nausea and dizziness, the shakiness, and the pain. I’ve worked though some of it because I need to finish my summer course soon, but there have been times that I knew I needed to stop. I just needed to rest, take a break, and let my body do it’s job.

 

Sometimes, that’s all you can do.

 

Peace and healing, molly

 

“When an illness knocks you on your ass, you should stay down and relax for a while before trying to get back up. “ ~ Candea Core-Starke

*6 Months* {An Update}

Yes, yes I know. I’ve been slack in updating lately. I fully acknowledge it! The last few months have held so many ups and downs that I’m exhausted just trying to think about it. Trying being the key word there, as I’m already exhausted before even trying to think. Quite a conundrum, I’d say.

 

So, wow. Six months of treatment for my Lyme. I’m still trying to wrap my mind around it. The hardest aspect of this update is accepting that just a few months ago I hit the point where I felt as badly as I had last winter in November and December. That’s huge. I hadn’t felt like that in all of these months. And I hit this low while I was off my antibiotics. Am I really getting better yet? I don’t know. Right now, I don’t feel like I am. But I’m holding onto my favorite affirmation: Everything is getting better every day.

 

Today marks the end of my first week back on antibiotics after my Mayo experience. I’m still not feeling quite myself. I feel a disconnect between my mind and my body. My brain fog is insane right now. I can’t keep a thought in my mind. I’ve got a constant headache, and I’m so very tired. It feels as if it take a huge effort on my part to accomplish anything.

 

I have accomplished a lot lately, but perhaps I took too much on. Again, I don’t know.

 

My LLMD feels that being taken off the Levaquin is what finally brought my intracranial pressure down. She’s comfortable putting me back on her treatment plan, but we’re proceeding cautiously. I wish it could be more aggressive though. I want to see the end of the tunnel, not just know that it’s there. You know? So currently I’ve got a week on antibiotics and then a week off. I see her again on the 14th to check in and learn what will come next. She’s keeping an eye on my adrenal functions now too. I’ve begun taking a low dose of licorice extract each morning hoping to up my cortisol  levels. Their low functioning might be what causing some of my deep fatigue.

 

In the meantime, my eye specialist isn’t completely assured by Mayo’s findings. I go in to see her on the 15th, and will hopefully be able to start lowering my dose of medication controlling my spinal pressure. We’ve found that many of it’s side-affects are actually my Lyme symptoms. It would be nice to know which they’re being caused by!

 

I’m still enjoying the time at my cabin. It’s been so wonderful to be out of school and able to relax finally. At the same time, it’s been a bit overwhelming so far. The sound level is tough. Loud sounds cause my dizziness and nausea to increase. I’ve got super sensitive hearing as a symptom. Hopefully I’ll still be able to be myself and have some fun with my family this week!

 

Peace and healing, molly

A Few Deep Breaths

Recently, I’ve been asked by friends and general concerned folks about what I’m feeling and thinking now that I’m headed to Mayo this week. The only answer to pop into my mind? “I… don’t know…”

 

They wonder, am I scared? Nervous? Anxious? Happy? And I tell them, I wish I could put my finger on what it is I’m feeling. I think it will really hit me Thursday morning as we drive up to Rochester what it is I’m in for. Perhaps I’ll have a handle on my feelings then. But now? My rational, cool, calm, and collected side is coming out. Sure, I’m nervous, and scared. I would be crazy not to be. {I have done my googling, after all.} But all the same I feel as if I’m drawing on some inner source of power to help ground me these days.

 

Last week I found a free guided meditation audio clip. I’m drawn towards positive affirmations lately. And I can spend hours searching, pouring over quotes to uplift me, inspire me, and offer some food for thought. But meditation is something I’ve always wished I enjoyed more. I’ve tried to learn, but it takes time and practice. So, I gave this one a shot. Worth a try, right?  And what do you know – it was amazing. I felt free, calm, and happy. I realized a smile had appeared on my face. It was shorter than 10 minutes in total, but I can still feel those sensations I had as I was lost in the beautiful images and words being spoken to me.

 

I’ve found myself closing my eyes and simply breathing since that episode last week. In, and out. Deep breaths. I can hear the cars driving by down the street, the clock ticking in the kitchen, or Wilson barking in the back yard. My mind is clear, and in the exact present moment for just a time. It’s simple meditation. But I’m doing it. And yes, I can tell that somewhere inside myself are those emotions I felt the other day. And it’s such a beautiful feeling.

 

I’m hoping, and praying that I remember to take a couple spare moments at Mayo this week to take a few deep breaths. Perhaps I can find that grounded feeling, for just a moment, when I need it most.

 

I can feel the stress and the physical symptoms taking a toll on my body. Going off my medications has been tough going the past few days. My stomach is a mess. I’m having weird, random nerve pain, tingling, and numbness. I’ve got a headache that comes and goes. I shake like a leaf. And I’m tired. So incredibly tired. One moment I’ll be fine. And the next I’ll have pushed my limits. The line is not only gray, but blurry when it comes to my limitations and that I’m not used to.

 

Peace and healing, molly

“Change the way you look at things and things you look at change.”  – Dr. Wayne Dyer