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(via Shawna Lemay on Flickr)
I think those of us with invisible illnesses understand this quote more than the average person. We quite literally live it. Thank you, Plato :)
In other news – I’m off to my LLMD this afternoon. I’m crossing my fingers! It’ll be my first appointment since stopping all my pharmaceutical antibiotics last month. Many symptoms have lessoned, and a few old ones have resurfaced. I’m not sure what to think. I’m trying to go in with an open mind.
I’ll be back with an update soon!
Much love,
molly
I’ve always been a firm believer in the knowledge that life isn’t all black and white. We live in the gray, and we make the best we can of what we’re given.
However… I never thought that the concept of being “healthy” would appear to me as something nondescriptly gray. Theoretically it’s such a clear-cut, simple issue. Not always so.
I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.
I have so much to share with you! You’ll have to be patient with me as I grapple with the correct way to explain what has happened to me in the last few months of my Lyme treatment journey. Tonight, I’ll share the most important part.
My doctor and I (for various reasons I’ll explain at some point) decided to take me off of all my pharmaceutical antibiotics this month. It’s been just over two weeks now, and I’m lost. I have absolutely no idea how my body feels about the change. I have had such trying months since November, that I was truly not sure what to expect.
I’m being treated for an intestinal yeast infection in the interim. Which – if I may sideline for a moment – sucks! My abdomen is still swollen and I believe I had a significant herx right after beginning treatment.
Since the 11th I have had days some good days, and some horrible, and too many in-between. Nothing is constant. I’m searching for clues, taking mental notes, observing myself. Some symptoms are better and others are worse.
I’m adrift, keeping my head above water in the gray. I’m frustrated. But at least I’ve earned myself a medication vacation for a while :)
Wishing health & happiness abound,
molly
“Each time we face a fear, we gain strength, courage, and confidence in the doing.” -Unknown
Toxins.
My LLMD brought up The Big Bad Word at my appointment this week. I hate the word toxins. Even more so do I hate the word toxic. I’m a visual person, and the word “toxic” brings with it only bad images.
I see hazmat suits and warning signs.
My LLMD appointment was on Tuesday. My LLMD is moving to a new building this month, and the next time I see her will be there. I can’t wait. For me, atmosphere means a lot. The clinic I have been seeing her at for months makes me ill. They have those lights that buzz, the nurses wear too much perfume, and the overall feeling of the place is sterile. It has nothing that stimulates healing for me. I really hope that the new office will be more suited for her; I really do. We patients deserve it.
My appointment can be summed up by the title of this post: The Big Bad Word.
I went in feeling that I was herxing. I know what this feeling is. My body is slowly becoming overwhelmed by toxins. The newest antibiotic trio has been working. But, is it too much? If you’ve been reading my blog for a while you’ll know that I’ve always been sensitive to treatments.
I feel as though I take two big steps forward in treatment. I make progress. I taste it. Then, my body forces me to back up again. I feel as though I’ve been in the same place for months. What has changed? Very little, actually. I had those great 3 weeks, and since then I’m back to where I was.
I’m frustrated.
My body is trying desperately to detox. I’m breaking out in whole-body sweats. My skin literally itches. My body is showing signs of trying to shed these toxins but it needs help. I left her office with the names of two new supplements to add to my regime which will aid in the detoxification. One I still need to order, and the other is in the mail already. I should be starting at least that one next week.
My antibiotic dosage has also been slightly reduced in order to help my body adjust. We’ll see if between these things I’ll see a difference. I hope so. Right now I’m living in a fog. My head feels as though it will explode at any moment, and my overall pain levels are increasing. My fatigue has struck again. What I laughingly refer to as my memory is becoming tiresome. I’m shaking like a leaf.
My daily functionality differs day by day.
Today I had plans to go shopping with my best friend. We ended up staying at my house, making popcorn, and watching Robin Hood: Men in Tights. All in all – it was a great day!! I’m grateful for it. I had so much fun. I laughed. I smiled. We talked. I loved this day. But our plans changed because suddenly this afternoon I was hit unexpectedly with a wall of fatigue.
I literally turned off my computer, the lights, and fell asleep on my couch for 20 minutes. I never take naps. When I do, I know it’s serious.
Maybe that’s why I enjoyed Robin Hood: Men in Tights so much today… humor to heal the herx? I’m willing to give that a try. Anyone ever tried detox by laughter?
Laughter heals – that much I know. But does it detox?
Well, it can’t hurt :)
Wishing you health & healing,
molly
“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’ve been meaning to write this for over a month now, but I’ve never gotten very far on it. Oh, I’ve opened my writing program, dashed out a few lines now and then, but it never felt right. Nothing ever clicked. Nothing ever seemed right. It still doesn’t.
But I’ve decided {albeit belatedly} that this is what needs to be told. This difficulty to write is a symptom. Writing has never come hard to me. This, this isn’t normal. No. It’s a symptom, and I want to have this chronicled, if not for myself then for all those others out there who know what I’m talking about.
I feel as if there is literally a blockage in my brain. The frontal lobe has separated, and I can’t connect the pieces. I feel as if most days all I get accomplished is simply running around after myself picking up the small bits I keep dropping, only that I won’t notice until tomorrow that I really didn’t pick up any more than I missed.
Two steps forward, one back. Two thoughts forgotten, one remembered.
I feel disconnected. My body is telling me things and I’ve lost the decoder key. That’s never good.
I see my LLMD this week. I’m still not sure what I’m going to tell her. Maybe writing this will help me pick out the bullet points, I don’t know. A month ago I didn’t know what to tell her either – other than exactly what she had been waiting for me to say. I told her that I was placing myself in her hands, and she could do with me what she willed.
Of course, I’ve been doing that for over a year. But this is different. I told my doctor that the time has come for me to hand myself over to her. I have no school, no job, limited plans, and an entire year to concentrate on healing myself. I told her that she could throw at me whatever treatment she felt would be best for me and not worry about how the treatment would affect my life. This is what this year is for, I told her.
You should have seen her face.
She knew this was coming, and was she ever prepared. I’m now on a trio of antibiotics which are supposed to be working in unison, as well as an herbal tincture. I won’t get into the specifics of medication names – maybe I will at a later date – but I’m absolutely sure that I’ve gotten myself into exactly what I knew I would.
I’ve opened a door, and walked through it. I’ve committed. This is Lyme Disease treatment, baby; and I’m grateful for it!
At first I was shocked. I didn’t feel a horrible herx. Every day I took my dose in the morning, afternoon, and at night and just waited. I waited to feel something. And I did. Soon, I felt –gasp– better!
Each day flew by. I was making jewelry, rolling paper beads and listing items on Etsy. I was talking to friends. I was doing things!
One morning I felt different, and not in a good way. I spent that day on the couch. I gave myself time. And the next day I was up, feeling great again! I couldn’t understand it – but I wasn’t questioning it. About another week went by before I spent another day completely on the couch. Then, slowly, I began to notice more symptoms each day. Little things piled up.
Cold sweats, heart palpitations, constant, nagging headaches, and brain fog crept up on me until before I knew it they felt normal again.
I’m so, so grateful for those blissful few weeks! They gave me time to feel my feet grow steady under me. I enjoyed them! I was tired, of course, but I was never actually sure whether I was tired from being sick or tired from doing too much because I felt so good. Those are the days I would choose to live over again. When I look back on this month, they are the ones that I remember. I don’t recall what caused me to spend a day on the couch 3 weeks ago. But I do remember getting to listen to live Irish music downtown with one of my oldest friends. I do remember all the jewelry I made, and the family who lovingly supported me whilst doing it. I remember the days that I could cook, rather than the times I was too sick to eat, even though I know both of those things happened. They must have.
Some of these things I’ll blame on the whole horrible-memory-due-to-neurological-Lyme-disease thing, but I want most of the credit for this to go to the fact that there were just so many more good days than there were bad, and that’s something that I haven’t gotten to say in a really, really long time!
I might be hitting a herx now, but I had some great days before it hit. I think we’re on the right track. And I think now I have a better idea of what I’ll be sharing with my doctor this week.
As far as my blogging goes – look for me. I’m intent on sharing my healing journey with you all, and that involves the ups, and the downs. And I’m telling myself that my writing won’t improve at all by ignoring it. I need to polish the tarnish away, sweep away the cobwebs, and join the land of the bloggers again.
In peace & healing,
molly
“Happiness is nothing more than good health and a bad memory.” – Albert Schweitzer
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
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.
I'm in the Lyme-Light 
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