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First off, did any other bloggers watch the new House episode about the compulsive blogger? Whew. I’m not going to lie – that just made me laugh! I’m happy to know that I’m not as obsessive about this as I could be. Not to say I don’t love you all, but I’m convinced my life must just not be as exciting as hers (thankfully)! I’m enjoying the relatively free schedule I’ve got before the storm of Spring of my senior year arrives with the melting of the snow. But, that’s another post altogether.  

I want to talk about the actual storm of the moment.

Today a friend asked me how I was. It’s a simple question. I get asked it all the time, and out of habit I always say “I’m good!”. Sometimes, I’ll give out an “Oh, I’m ok.” or a “Eh, I’ve been better.” I’ve learned to tell when people ask this seriously, and when they’re just asking to ask. Today, my friend was serious. They cared about the answer. They wanted to know, and I didn’t want to mislead.

I stalled for time. Putting off the inevitable, I guessed.

Finally my friend asked why I was avoiding the question. And at that moment it struck me that I had been avoiding answering the question because I simply didn’t know the answer. They were serious. I was too. I didn’t know how I was. I don’t know how I am.

I’m not good. But I’ve been so, so much worse.

I continued to give this some thought before I answered. I trusted my gut reaction, and blurted out that life felt like “a blur”. What a contradiction we live treating this disease. Our days feel long. Sometimes, the symptoms make it seem as if a day is an unending trap. But our lives are slipping away faster than we want to accept, at the same time.

These long, long days mixed with the time slipping through my fingers feels like a blur that I can’t see through.

I want a pause button. I don’t want to fast-forward, and I don’t want to rewind. The past is over and finished – it’s meant to be built upon and learned from, not relived. And the future is full of possibilities that I can’t even imagine yet. I want to live my future as it comes, not skipping ahead. But right now is going too fast. And too slow. I want to pause. I want to take a time out. I want to step out of life for a while and return in this exact moment, feeling more prepared to live it.

I didn’t know what to say to my friend. I explained the blur sensation, and remarked about the good mixing with the bad. And with some prodding, I thought about what it is that’s going on.

I’m reliving symptoms that I’ve been trying to escape for years. Not only that, but new ones are appearing. I can live with that. I can even accept it. But I don’t have to be happy about it. And, I’m not. I’m frustrated. I want this stage in my treatment to be finished. I’m ready to feel better now, please.

My doctor has me finishing up a last month of Mepron – the antibiotic from hell. Or, at least one of them. At my most recent appointment after being taken off this medication my doctor listened to me describe the herx reaction. It was… extreme. It was decided that my symptoms off of the Mepron are worse than the damage it is doing to me in the meantime. I’m still not sure how I’m supposed to take that! So here I am back on the Babesia kick meant to keep me from getting worse. In essence, I’m fighting to keep the small progress I’ve made.

And yet, I don’t feel better. I’m living with a constant headache. I’m dizzier than I have been in years. My joints are swollen and painful. My entire body aches. I have no appetite. I’ve got the sweats, and a near-constant temperature. The brain fog is intense. My memory loss is becoming frightening. And I’m not giving up.

I won’t let this disease win. This round isn’t over yet. 

I’m taking each day as it comes – the good with the bad. And I’m trying to make the most of the good. But I’d be lying if I said I’m ok. I’m not. I’m just trying to muddle through. Tonight I’m embracing my frustration.

Ask me if I’m ok tomorrow.

I may not have a pause button, but I’ve got my first acupuncture appointment of 2010 tomorrow morning. I’m so happy! I can’t wait for it. And I’ve had craniosacral therapy again twice this month already with another appointment this Friday. That’s almost as good as pausing, isn’t it?

May we all have better tomorrows, always. Each day we’re growing, changing, learning, and best of all, we’re healing. We’re fighting. Each day is bringing us closer to our hopes and dreams.

 

Yours in peace and healing, molly

I’ve been working on this post for so long that I barely remember what it all was that I wanted to say. In fact, this post has been so long in the works that apparently I’ve got another appointment with my LLMD next week. That works out wonderfully since I’ve forgotten my last one! (Surprise, surprise.)

I do remember that last month I walked into the office in the midst of my abdominal troubles. Near constant pain, swelling, and complete loss of appetite. My doctor had me get an ultrasound for a suspected enlarged spleen. That ultrasound came back within normal limits. But I was still left with the pain, not to mention the swelling. There really wasn’t much we could do. I wrote about this extensively here.

I also had a blood draw that day to check on my liver panel. Being on the Mepron was worrying with the toxicity, and now those new symptoms. Last week I came home from the Senate hearing and found a message from my LLMD waiting for me. My liver panel numbers were significantly higher than my December results had been. At my January appointment we had decided to wait and see what another month on the Mepron would produce. My Babesia symptoms had flared, and not broken yet.

Instead, with these new liver panel numbers I was instructed to stop the Mepron until we could discuss the situation with my doctor in depth. So, I was on the yellow stuff one morning, and off that night. Just like that!

I think it shocked my system, frankly. Last week was one long herx. I barely made my school deadlines, and by the end of the week I had a migraine like I hadn’t had in months. I can only describe it as a headache so intense that it reminded me of the ICP episode of last year. I had a constant low-grade temperature, and an increase in brain fog.

But by Sunday morning I was feeling well enough to follow-through with my plans to volunteer at my old elementary school’s Mardi Gras, and then spend the afternoon with friends. It was a joy! And, I couldn’t believe my luck when I felt well enough the next day to spend another afternoon with friends! Things were looking up. The herx had lifted. Lifted, that is, all except for one symptom. I’ve still got the headache I got the day after I stopped the Mepron. It’s no longer a migraine, but it’s a headache. And it isn’t letting up.

As far as I can tell I’m still showing symptoms of Babesia. But, I’m waiting to hear my LLMD’s opinion next week.

I feel differently since stopping the Mepron, however. I don’t know how to describe it. A word isn’t coming to mind. I think my energy levels are a little higher, and my stomach has felt better since last week. My concentration level and cognitive functions are fleeting though.

Yesterday I couldn’t settle down to work on homework. Something just wouldn’t let me concentrate on what was in front of me. Instead I found myself making bread. Gluten-free bread. From scratch! I don’t even remember starting – I just recall being in the thick of measuring flours and smelling yeast. I made a big pot of quick lentil soup for dinner (I’ve been craving lentils like crazy!), and threw together a chocolate pudding to set overnight. I was a madwoman in the kitchen and I could barely stand by 7 o’clock.

I do feel that I’m not getting enough probiotics in my routine. And, adding more can only help my abdominal issues. I do take a supplemental probiotic, but I want to be adding additional foods to that. So – deep breath – starting this week I’m going to begin brewing kombucha (fermented tea) and give that a shot. I’m also very interested in water kefir as a dairy-free kefir option.

I had the opportunity to spend the afternoon today at the MN hearing for the house version of the Lyme protection bill, HF 2597. No vote yet. The bill was tabled.

More soon. I feel sleep coming, and not a moment too soon.

Peace and healing, molly

 

“So what do we do? Anything. Something. So long as we just don’t sit there. If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late.” – Lee Iacocca

Every night for the past two weeks I’ve considered blogging. I wanted to. But the thought of it made me cringe. And I couldn’t figure out why! I think it’s because there’s so much that I haven’t written about. The month since my last doctor appointment alone feels like it’s been a lifetime. So, I’m just going to jump right in. I’m sure I’ll miss some things, but I think I’ll cover the most important. Or, at least I’ll get some things off my mind.

I go in next week for my monthly check-in, and I have until then to try to remember all that I need to talk about. The Babesia has hit me hard lately. I was sick over most of my Christmas break, unfortunately. I’ve herxed harder since October than I ever have. Hence, my disappearance from the blogosphere. On the day that I began taking the Mepron I was knocked for a loop by my 2nd dose. Yes, my 2nd dose. It was literally a matter of less than ten hours by the time my body was retaliating. I was shaking with a temperature of 102 by dinner, and didn’t get over the worst of it until two days later. Since then I haven’t gone more than a week without a herx reappearance – some lasting just day or two, and others lasting weeks.

I’m in a fog and lost in the symptoms. They keep piling up and I’m losing track! The temperatures have come back, and so has the stomach pains, shakiness, dizziness, breathing troubles, and my Bartonella rash. The latest culprits are nerve-related. Seemingly at random parts of my body will feel a chilling burning sensation. I know, that makes no sense.  But I don’t know how else to describe it! Other times it’s just a slow, steady warming that spreads. And, I haven’t had this much trouble breathing in years. That’s one of the only reasons I know for sure (other than the Mepron) that this is really being stirred up by the Babesia.

There’s more, I know it. But I think that those are the most relevant right now. Other than the brain fog which has reached astronomical levels.

I forgot to mention – most likely because I forgot until late last week that it was even happening – that I finally got scheduled for a tilt table test. We’ve been waiting for this since July or August. I think I’ve talked about it here before, but to remind those of us who have a failing memory the purpose of this particular test is to determine whether POTS is causing any of my issues. POTS stands for Postural Orthostatic Tachycardia Syndrome.

I’m not at all happy about the thought of this test. I’m so dizzy and nauseous already! Being strapped to a moving table isn’t going to help me any. I’m just hoping that it goes smoothly. So give me a thought on Thursday morning, please. I can use all the happy, healing, positive thoughts and prayers I can get!

Alright, I *might* be tired enough to sleep now. I think getting this all off my chest helped a bit :)

And a shout-out to a few of my friends for taking me out today! I had a blast. I always do when you guys give me the chance to feel normal for a while. Thank you!!

I’ll be back soon. Promise. I have school news to share.

G’night all. Sweet dreams!

molly

Please, let me apologize for my (very) prolonged absence. The last few months have been rough, and I think I needed the time away from the blog. It was hard; I felt the loss, but this Babesia has really hit me hard.

However – I have so much to share and so much to tell you! Life hasn’t stopped since I left you. No, it definitely has not. It’s gone marching forward. So far forward that before I knew it January had snuck up on me.

I’m feeling profoundly grateful. And add to that a sense of pride, hope, and determination, too. I’ve officially survived a full year of Lyme treatment! And what a wild, crazy & unexpected year it was! On January 1st, 2009 I took my first dose of Doxycycline, and began my Lyme journey. Three days ago, a full year later, I was with my closest friends as they watched me deftly swallow my Mepron and force down almost 20 pills. But I didn’t care. Do you know why? Because I survived.

Thank you – from the very bottom of my heart – to all those who helped me though this journey, and to those of you who helped me celebrate my anniversary! I don’t know what I’d do without you. You’ve paved the way for my small successes against this disease.

Photos and a longer update will come soon!

It’s a new year, a new decade, and a new year of Lyme treatment. I don’t know what this year has in stock for me. I can’t pretend that I’m prepared for it. But I am ready to feel the victory this time again next year.

Happy belated New Years! Wishing you a peaceful, and a healthy year filled to the brim with joy, happiness, and hope.

Cheers!

 

“Man can live about forty days without food, about three days without water, about eight minutes without air, but only for one second without hope”

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” ~ Bill Cosby

I usually leave you with just one quote to ponder with me. But tonight I’m offering two. Hope, and laughter have been some of the best medicine for me this year.

It’s November. Eleven months into my treatment, and tonight I’m simply staring at my handful of pills, tablets, and capsules. I’ve become accustomed to this ritual. And yet tonight feels different. I don’t know what I’m expecting to happen. But I’ve got that daunted, overwhelmed feeling.

I’d forgotten this feeling. For me it’s the mark of starting new treatments, new antibiotics. It’s a new phase of treatment, and it’s scary.

I had an appointment with my LLMD yesterday. My mom had her 1st official Lyme appointment before me, and then it was my turn. She has finally decided to go ahead and treat her Lyme, slowly but surely. She’s starting with several herbals from the Cowden protocol. {I think!} She’s working on a schedule to keep it all straight, and I’m trying to help as much as I can. Having two Lyme brains working on this has got to be better than one, right? Too bad she’s not blogging about it!

So, my appointment was next. I was feeling great going in. I was expectantly waiting to hear her thoughts on my treatment after going to the ILADS conference. Her plan was to wait until afterwards to begin treating my Babesia and hopefully gain some new information and insight. And, boy, are we going to treat it! She was ready with a plan of attack.

Just as a reminder – Babesia is a common tick-borne co-infection. It functions as a malaria-like infection that thrives in the red blood cells. I received a positive Babesia test result a few months ago, but haven’t talked much about it on here since I wasn’t actively treating it yet.

I’ve been on a very low dose of only one antibiotic since June, Azithromycin. My new treatment is bumping that up to a normal dosage, and adding in two more new antibiotics to target the Babesia. Yesterday I began taking Bactrim, and today I’ll begin the infamous yellow liquid, Mepron.

In addition to these antibiotics, I’m still taking the herbal microbial Cumanda which is targeting the Lyme, Babesia, and my 1st co-infection, Bartonella.

I’m scared of this. I don’t know how I’ll react. How much sicker will I get before I see some more improvement? How long will I be on these medications? Will I be able to finish my semester of school? But, no matter the answer to those questions – I’m ready for it. I’m ready to start this new phase. The sooner I do, the sooner I can get better. It’s time to kick some Babesia butt!

Tonight I’ve nervously taken my 2nd dose of Bactrim. I say nervously because we’re afraid I’m already having some kind of reaction to it. About 6 pm tonight I was almost doubled over in the grocery store with stomach and abdominal pain. It has calmed down for now, and I’d love to not be woken up by it!

I’m crossing my fingers, saying a prayer, and setting some positive intensions.

I’ll be back later this morning with a Mepron post! {Cough-cough-GAG!}

 

Peace and healing, molly

Oh my. I may have escaped La La Land – for now. It was a tough day today. I felt a complete disconnect from my mind and my body. So strange, especially after having a great craniosacral appointment this afternoon. Anyhow, let’s hope this breakthrough can carry on until tomorrow! I could use a day with mental clarity. It helps to be able to think through the fogginess every few days. I was just given an extension on two of my hardest classes {I love my teachers, have I said that?}, but I still have a lot to do and I’m starting to falter. One step forward and two back.

Same old story.

But, I’ve realized I’ve had some improvements lately! Yes! I love sharing those. Remember I said in my last post that I had some treatment updates? If not, it’s ok, I had to go back and re-read my post before I did. But, I do!

First, I’ve finally been cleared to begin taking Nattokinase. You might have heard some chatter about this supplement before. I know I have. As far as my understanding goes, it will break up the fibrin clots in my body so that the antibiotics can get to the newly exposed bacteria.  Sounds good, right? This enzyme has also been talked about in conjunction with the Lyme “biofilm”. I’m not going to touch on this only because I haven’t done the research on it. I really know nothing about it. But, if it helps with that – awesome! No complaints here. My LLMD suggested Nattokinase as an option way back in March, or so, but we couldn’t order it right away. Turns out that by the time we had received it in the mail I was advised against taking it. That was during my ICP crisis, and they didn’t want to chance any bleeding into my eyes. Nattokinase does act as a blood thinner.

Secondly, I’m excited to be adding Turmeric to my daily arsenal of supplements. In very high doses, this herb has been found to reduce inflammation and pain in the body. I’m all for pain relief these days. My pain has been flaring up more than I expected this fall. It’s been bad. So I started 900 mg of Turmeric three times a day last week. By today I realized that my pain level was down to a 6 when I went into craniosacral this afternoon! {My pain levels have been around 8 & 9 consistently this fall}. Amazing! Let’s see if this is a good fit for me. I really, really hope so.

Turmeric

These pills are HORSE pills though. I mean it. I measured! It’s practically an inch long, no joke. I have photographic evidence! Sorry for the blurry cell phone picture, my camera died this afternoon. But look! Sad thing is that I don’t even feel it going down. 

 

And last but not least, another supplement has been added to my polka dotted bag o’ meds. I’m now taking 5-HTP each night to help me regulate my sleep cycle again. It has been shown to increase serotonin levels. Over the past few weeks my sleep has been fit-full. I would wake up exhausted and feel groggy for hours. I realized yesterday that it must be helping, because I’ve been so tired at night that I’ve been falling asleep before doing any reading. I never do that! I’m not only just falling asleep, but I’m staying asleep all night. A full night’s sleep – imagine! Oh it feels good.

I can’t wait to go back to my LLMD in a few weeks with all of these new realizations! Progress feels so good, even if I’m still pushing my way towards the end of a very, very long herx. I’m also waiting to hear what news my LLMD has brought back from the ILADS conference over last weekend. Hopefully some new ideas for my treatment plan.

I had a Lyme co-infection test near the end of the summer and it came back with slightly positive Babesia result. So my running infection tally is now Lyme, Bartonella, and Babesia. Bartonella and Babesia are common tick-borne infections often found aside Lyme disease.

So, some good news, some bad.

For now I’m still thinking of that glass as half full.

Peace and healing, molly

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