I had my second LLMD appt last week. I really would like to state that I LOVE THIS LADY!!!!! She is very thorough, and loved that I wrote out which symptoms changed. She went over my whole symptom list, the lyme symptom list, and a general body systems list in addition to a physical exam. I'm doing ok. Not stellar, but not terrible, just like I thought.
The fact that my lab tests came back negative does not change the fact that I have clinical chronic lyme disease. Nor will it change our course of treatment. Having a herx reaction right away cements that I do in fact have lyme disease, because they only occur with spirochete infections.
While going through the system check, she touched on thyroid. I mentioned my maternal history and the fact that I have several hypothyroid symptoms, yet all my labs have been within the normal range for years. She said, "Sometimes people have slow metabolisms and do better on a low dose of thyroid meds even though their labs are normal."
I nearly fell off my chair with excitement, because I have read that before, but had never come across a doctor who believed it! So, she instructed me to take my temperature 3 times a day and take the average of them. A low temperature is proof of a slow metabolism, and if I do this, she will be able to prescribe me some synthroid to try! I am SUPER excited about this prospect, because I have thought and wondered about this for years but nobody was willing to help me. So far, my temp hasn't even hit 98.6, even when I've been feeling feverish. Most of the averages are 97.5. However, each of my afternoon temps are higher than the others, which I believe is a symptom of lyme & co in and of itself. I'm looking forward to the next appt to see what she says!
Since I have had so much gastric upset and sun problems with the current dose of azithromycin, she kept it the same. Thank GOD!!!!! She wants me tolerating it well before we increase it. My stomach seems to be doing a bit better on it in the past week, so maybe next month it will go up. She also added in 400 mg of plaquenil each day, giving me the instructions that I can take it as I wish (they come in 200mg tablets), as long as I get the 400mg each day. I've been playing around with that, starting it on this past monday, because we had a big trip planned for that weekend. She suggested that I find a good refrigerated probiotic, as it helps keep the organisms fresher. I just started a new pack of 30 of what I currently have, so I'll do that when I'm done with this stuff. I seem to be doing fairly well on that front though. She also suggested I start taking chelated magnesium, for all my aches and pains, up to 2 grams daily, as I can tolerate. I'm still trying to find some good stuff.
The plaquenil is something fierce! It has caused me moderate nausea (its bad, but I'm not puking from it) and the bugs really don't like it. I have tried taking it a number of different ways. 200mg with the rest of my morning pills causes too much nausea. A late morning dose and early afternoon dose (without anything else taken with it) was pretty bad nausea too, and I ended up with the biggest herx I've had yet. Yes, its good, cuz it means the bugs are dying, but its also bad to have to endure, and the neurotoxins can actually cause damage if there is too much of them around for too long. So today, I'm trying out taking the entire 400mg with dinner, so I avoid mixing them with other meds, and I can sleep through most of the bad stuff.
Taking them with a big meal has helped with the nausea, but it has caused quite a bit of gas. Interestingly enough, I'm starting to feel my cheeks flush just 2 hours after taking it. Pretty soon its bedtime, so we'll see how I sleep and feel in the morning. I'm hoping its a go!
I really want to kill these damn buggers, but it would be nice if we can avoid a repeat of yesterday. I needed to stay in bed most of the afternoon and evening, and had to abandon making supper, right in the middle of things. I've been trying to be prepared for things to get worse, but now that that reality is looking me in the face, I have to admit I'm kind of scared. I couldn't take care of my family, and it was all I could do to get up to go to the bathroom or get a drink of water.
Today I've been feeling much better, my body felt lighter and I didn't hurt as much. If I can time the plaquenil doses right so they do the killing while I sleep, this might be a doable arrangement. I want them GONE, but I also want to be able to function.
Thursday, July 14, 2011
Wednesday, July 13, 2011
A day in the life
Have you ever wondered what it feels like to have and be treating lyme disease? If yes, read on. If not, you can skip this post, cuz I'm kind of feeling like this is going to end up being whiny.
I'm feeling really rotten right now. My hands ache - along each and every bone and in every joint. My ankles and low back are joining in the ache chorus too. A few minutes ago I felt the need to sit down on my kitchen floor because standing up was just too much and I didn't have the energy to complete the task I was in the middle of (getting Lizzie some juice).
I'm exhausted, feeling like I could curl up and fall asleep at any minute. I'm counting down the time until Lizzie's nap, so I can take one too. I just realized my ginger ale isn't right next to me and I have to get up and get it, but I'm not really feeling up to doing that right now.
All of Lizzie's activity and sounds (constant chatter and singing and general noise making) is making me feel overstimulated. I had to tell her to go and sit on the couch instead of at my elbow a little while ago because when she bumped me, my whole body tensed up and I felt very anxious and crowded.
I feel like I'm going to puke or have diarrhea, alternately (medication side effects). My lymph nodes ache and I'm feeling chilled. Yesterday I felt like my cheeks were flushed and I was feverish. This is GOOD news, as it is a herx reaction, so it means I'm killing the buggers! But it still feels like the flu. Thankfully its pretty mild.
All this together makes me want to hide in bed and sleep. But, I'm a mom and have a 3 year old to keep busy and out of trouble and a house that is begging for attention. So I can't quite run off. Maybe throwing a blanket over my head and body might create the illusion of hiding for a few seconds. I should try it!
I'm feeling really rotten right now. My hands ache - along each and every bone and in every joint. My ankles and low back are joining in the ache chorus too. A few minutes ago I felt the need to sit down on my kitchen floor because standing up was just too much and I didn't have the energy to complete the task I was in the middle of (getting Lizzie some juice).
I'm exhausted, feeling like I could curl up and fall asleep at any minute. I'm counting down the time until Lizzie's nap, so I can take one too. I just realized my ginger ale isn't right next to me and I have to get up and get it, but I'm not really feeling up to doing that right now.
All of Lizzie's activity and sounds (constant chatter and singing and general noise making) is making me feel overstimulated. I had to tell her to go and sit on the couch instead of at my elbow a little while ago because when she bumped me, my whole body tensed up and I felt very anxious and crowded.
I feel like I'm going to puke or have diarrhea, alternately (medication side effects). My lymph nodes ache and I'm feeling chilled. Yesterday I felt like my cheeks were flushed and I was feverish. This is GOOD news, as it is a herx reaction, so it means I'm killing the buggers! But it still feels like the flu. Thankfully its pretty mild.
All this together makes me want to hide in bed and sleep. But, I'm a mom and have a 3 year old to keep busy and out of trouble and a house that is begging for attention. So I can't quite run off. Maybe throwing a blanket over my head and body might create the illusion of hiding for a few seconds. I should try it!
Thursday, July 7, 2011
The Calm before the Storm
I was meaning to write about this weeks ago, but always figured there would be another time, and when there was time, I wasn't thinking about it. So here it is, the night before my next LLMD appt and I have yet to write about how the the past 3.5 weeks of azithromycin treated me.
In a word, things were calm. Well, sort of. But I imagine that increasing the dose will increase the side effects and that adding another med will have its own effects on me. Not to mention what it will do to the critters living inside me. Thinking about this has suddenly cast a fearful shadow over me. While I stated that things have been calm, they have not been perfect.
My stomach bothers me on a daily basis. There are a number of different types of pain that hit me seemingly at random. Often its nausea. Sometimes its sharp, making me wince and gasp. And another frequent sensation is a dull ache of sorts, which I described like being punched in the gut. Its deep and spreads wide, gripping in its own way. I have discovered that eating small bits, particularly when I take my zith, helps with the nausea and sharpness. The gut punched pain feels a bit better with moist heat like a hot rice pack or hot water bottle.
That was the stomach. Specifically, not in a general 'tummy' sort of term. The intestines are another whole deal. I get random gas pains and cramps, which heat also helps. They occasionally signal that its time to go to the bathroom. When I can feel the pain specifically moving along my colon, I know that diarrhea is soon to arrive. At least it hasn't happened very often, maybe once a week or so, and I'm seeing a pattern, so I am a little forewarned.
It rather sucks to have all this gastro-intestinal discomfort. I kind of feel like a low grade stomach flu is always here, or right around the corner. I often don't feel like eating when I'm feeling lousy like this, which in some ways is good. Unfortunately I haven't really lost any weight from it though. And sometimes, usually in the evening, maybe 3-5 times a week, I get a case of the munchies. I was warned of this side effect at my first appt, and thankfully it hasn't been that bad yet.
I'm concerned about increasing the zith. Right now all these side effects are pretty much dealable. It's not pleasant, but its not debilitating. I'm just wondering how I'd be able to deal with worse tummy stuff. Perhaps I'll buy some stock in ginger. That has helped quite a bit when I tried it - a slice into some lemon fuzzy water. Pain and nausea gone with the first sip. I had to keep drinking it though, cuz it would return fairly quickly. But, improvement is improvement!
One more side effect to talk about.... Sun sensitivity. The last week or so I started noticing my eyes were getting more and more sensitive to the sun. And then my skin started burning. Well, it felt like it was burning, but it didn't really turn red. I have discovered that I need to have my skin covered when out in the sun. Which really sucks because I'm pretty heat sensitive and overheat easily, with a difficult cooldown. I wear long pants, long sleeved shirt buttoned up to my neck, my celebrity hangover sunglasses (you know, the HUGE ones that are really dark and cover half your face), and a big hat with a neck veil or whatever that piece of fabric that hangs down to protect the neck and ears. And my cheeks and nose still burn. For the most part I have found that fabric works well enough if its not super hot and super bright. Which I like, because putting on sunscreen takes a lot of energy! I could do an entire blog post on protecting my skin from the sun. Hopefully I'll actually do it!
As far as the symptoms I had before I started all this, I am feeling better and worse. A handful of things have improved. My air hunger isn't every single day. I have a few bad days and a few good ones; it cycles, which I guess is how Babesia likes to work. A bunch of my muscle symptoms ahve improved too. Not gone away entirely, but not as often. Some of my hypersensitivity is a bit better, some worse (SUN!). I went through the list of symptoms I wrote up in May and made changes so I could compare the two. I'm not going to go through all of the details.
My brain fog has gotten worse. I can focus less and comprehend less and I forget more words. And my fatigue is worse too. I am now able to do about 5 minutes of work on my feet, or even sitting if it involved active arm movements before I have to rest. And it wipes me out. I need a good 20-30 minutes to recharge, and is if it doesn't include yelling at the dogs or the kid, or having to get up for anything. It really really makes living life difficult! My balance seems worse too. Like I can't quite get my weight centered over my foot if its off when I set it down. I'm so much more tippy. I haven't fallen or tripped more, just less likely to be squarely balanced.
So yeah, things have pretty much reacted the way I expected. Some things get better right away, and others get worse. But I'm hanging in there. All you can do, right?
So I have my ducks in a row for my appt tomorrow. The bloodwork (CBC with platelets, and a liver panel) should be at the dr's office and I've gone over my symptoms and side effects and have them printed out. I'm starting to get nervous though. I don't want to get much sicker than this, cuz then I'm not sure how functional I'll be able to be. I'm just scraping by as it is.
Maybe I'll have one more calm weekend before we ramp things up though. Jared has a family reunion up north this weekend and his mom is in town for that. We're all planning on going, and I'd love to not have to deal with new meds. So I'm gonna see if I can wait till Monday to start the new stuff. *snicker*
In a word, things were calm. Well, sort of. But I imagine that increasing the dose will increase the side effects and that adding another med will have its own effects on me. Not to mention what it will do to the critters living inside me. Thinking about this has suddenly cast a fearful shadow over me. While I stated that things have been calm, they have not been perfect.
My stomach bothers me on a daily basis. There are a number of different types of pain that hit me seemingly at random. Often its nausea. Sometimes its sharp, making me wince and gasp. And another frequent sensation is a dull ache of sorts, which I described like being punched in the gut. Its deep and spreads wide, gripping in its own way. I have discovered that eating small bits, particularly when I take my zith, helps with the nausea and sharpness. The gut punched pain feels a bit better with moist heat like a hot rice pack or hot water bottle.
That was the stomach. Specifically, not in a general 'tummy' sort of term. The intestines are another whole deal. I get random gas pains and cramps, which heat also helps. They occasionally signal that its time to go to the bathroom. When I can feel the pain specifically moving along my colon, I know that diarrhea is soon to arrive. At least it hasn't happened very often, maybe once a week or so, and I'm seeing a pattern, so I am a little forewarned.
It rather sucks to have all this gastro-intestinal discomfort. I kind of feel like a low grade stomach flu is always here, or right around the corner. I often don't feel like eating when I'm feeling lousy like this, which in some ways is good. Unfortunately I haven't really lost any weight from it though. And sometimes, usually in the evening, maybe 3-5 times a week, I get a case of the munchies. I was warned of this side effect at my first appt, and thankfully it hasn't been that bad yet.
I'm concerned about increasing the zith. Right now all these side effects are pretty much dealable. It's not pleasant, but its not debilitating. I'm just wondering how I'd be able to deal with worse tummy stuff. Perhaps I'll buy some stock in ginger. That has helped quite a bit when I tried it - a slice into some lemon fuzzy water. Pain and nausea gone with the first sip. I had to keep drinking it though, cuz it would return fairly quickly. But, improvement is improvement!
One more side effect to talk about.... Sun sensitivity. The last week or so I started noticing my eyes were getting more and more sensitive to the sun. And then my skin started burning. Well, it felt like it was burning, but it didn't really turn red. I have discovered that I need to have my skin covered when out in the sun. Which really sucks because I'm pretty heat sensitive and overheat easily, with a difficult cooldown. I wear long pants, long sleeved shirt buttoned up to my neck, my celebrity hangover sunglasses (you know, the HUGE ones that are really dark and cover half your face), and a big hat with a neck veil or whatever that piece of fabric that hangs down to protect the neck and ears. And my cheeks and nose still burn. For the most part I have found that fabric works well enough if its not super hot and super bright. Which I like, because putting on sunscreen takes a lot of energy! I could do an entire blog post on protecting my skin from the sun. Hopefully I'll actually do it!
As far as the symptoms I had before I started all this, I am feeling better and worse. A handful of things have improved. My air hunger isn't every single day. I have a few bad days and a few good ones; it cycles, which I guess is how Babesia likes to work. A bunch of my muscle symptoms ahve improved too. Not gone away entirely, but not as often. Some of my hypersensitivity is a bit better, some worse (SUN!). I went through the list of symptoms I wrote up in May and made changes so I could compare the two. I'm not going to go through all of the details.
My brain fog has gotten worse. I can focus less and comprehend less and I forget more words. And my fatigue is worse too. I am now able to do about 5 minutes of work on my feet, or even sitting if it involved active arm movements before I have to rest. And it wipes me out. I need a good 20-30 minutes to recharge, and is if it doesn't include yelling at the dogs or the kid, or having to get up for anything. It really really makes living life difficult! My balance seems worse too. Like I can't quite get my weight centered over my foot if its off when I set it down. I'm so much more tippy. I haven't fallen or tripped more, just less likely to be squarely balanced.
So yeah, things have pretty much reacted the way I expected. Some things get better right away, and others get worse. But I'm hanging in there. All you can do, right?
So I have my ducks in a row for my appt tomorrow. The bloodwork (CBC with platelets, and a liver panel) should be at the dr's office and I've gone over my symptoms and side effects and have them printed out. I'm starting to get nervous though. I don't want to get much sicker than this, cuz then I'm not sure how functional I'll be able to be. I'm just scraping by as it is.
Maybe I'll have one more calm weekend before we ramp things up though. Jared has a family reunion up north this weekend and his mom is in town for that. We're all planning on going, and I'd love to not have to deal with new meds. So I'm gonna see if I can wait till Monday to start the new stuff. *snicker*
Friday, July 1, 2011
Test Results
Its been past time for me to post, but everything has been pretty status quo lately. Nothing terribly exciting or notable happening. I guess that's a good thing. I've kind of thought of it as the calm before the storm. I'll do a little more describing of a typical day in a different post.
Today I got a phone call from my LLMD. Not just from her office, from *her*. I thought that was pretty cool! And she didn't just give me the test results and go, she asked how I was feeling and if I had anything that I needed to talk about etc. It was really nice to not be rushed off the phone.
I had a urine test for Borrelia, and it came back negative. They were not able to find any evidence that the lyme buggers were in my bladder and urine from the samples I gave them. I don't know what exactly this means for my treatment and case. Of course, I didn't think to ask while I was on the phone with the doctor. I'll be seeing her in a week, so I'm sure we'll go over all the possibilities of what it could mean for me.
This brings up all kinds of doubts for me. Is it really lyme? Am I doing the right thing? Long term, high dose antibiotics is not something to enter lightly. There are a lot of negative consequences that can happen. Yeast infections, creating drug resistant strains of bacteria, and side effects from the drugs themselves are just a few.
But, I keep reminding myself of the huge laundry list of symptoms I have, hardly any of which that can be explained by positive lab tests and diagnoses of other diseases. Asthma is the only thing I actually tested positive for. Fibromyalgia is another diagnosis of exclusion. Meaning, I'm not positive for anything else, so that must be it. Except, my symptoms and disease timeline don't really match up with fibro. It DOES however really seem to fit with lyme, which is another diagnosis of exclusion. It is also a clinical diagnosis, which means that clinical symptoms carry more weight in diagnosis than test results. I guess I need to remember that according to test results, I'm healthy! Yet, clearly I am not. So my case is probably one where it doesn't really matter.
Another thing that suggests I put more faith in the lyme diagnosis is that when I took the antibiotics, I had a reaction right away. Not just side effects from the drugs, but signs that my body was dealing with dead critters of some sort. I can't imagine painful lymph nodes could be psychosomatic, nor a fever and chills!
But, I'll leave most of this up to the doctor. Its her expertise.
I also had a full panel of co-infections tested for. They all came back negative too. But, this doesn't really surprise me because they only test for a few strains, and there are dozens of different strains. If I have any, they're just different than the ones that were tested for. The doctor mentioned quinine when she talked to Jared about it (I was gone when she called that time), so I imagine she's still planning on treating for them.
All of this uncertainty is really frustrating. Maybe things will be more clear in a week.
Today I got a phone call from my LLMD. Not just from her office, from *her*. I thought that was pretty cool! And she didn't just give me the test results and go, she asked how I was feeling and if I had anything that I needed to talk about etc. It was really nice to not be rushed off the phone.
I had a urine test for Borrelia, and it came back negative. They were not able to find any evidence that the lyme buggers were in my bladder and urine from the samples I gave them. I don't know what exactly this means for my treatment and case. Of course, I didn't think to ask while I was on the phone with the doctor. I'll be seeing her in a week, so I'm sure we'll go over all the possibilities of what it could mean for me.
This brings up all kinds of doubts for me. Is it really lyme? Am I doing the right thing? Long term, high dose antibiotics is not something to enter lightly. There are a lot of negative consequences that can happen. Yeast infections, creating drug resistant strains of bacteria, and side effects from the drugs themselves are just a few.
But, I keep reminding myself of the huge laundry list of symptoms I have, hardly any of which that can be explained by positive lab tests and diagnoses of other diseases. Asthma is the only thing I actually tested positive for. Fibromyalgia is another diagnosis of exclusion. Meaning, I'm not positive for anything else, so that must be it. Except, my symptoms and disease timeline don't really match up with fibro. It DOES however really seem to fit with lyme, which is another diagnosis of exclusion. It is also a clinical diagnosis, which means that clinical symptoms carry more weight in diagnosis than test results. I guess I need to remember that according to test results, I'm healthy! Yet, clearly I am not. So my case is probably one where it doesn't really matter.
Another thing that suggests I put more faith in the lyme diagnosis is that when I took the antibiotics, I had a reaction right away. Not just side effects from the drugs, but signs that my body was dealing with dead critters of some sort. I can't imagine painful lymph nodes could be psychosomatic, nor a fever and chills!
But, I'll leave most of this up to the doctor. Its her expertise.
I also had a full panel of co-infections tested for. They all came back negative too. But, this doesn't really surprise me because they only test for a few strains, and there are dozens of different strains. If I have any, they're just different than the ones that were tested for. The doctor mentioned quinine when she talked to Jared about it (I was gone when she called that time), so I imagine she's still planning on treating for them.
All of this uncertainty is really frustrating. Maybe things will be more clear in a week.
Sunday, June 12, 2011
Goodbye amoxicillin!
Thankfully, today is the last day of amoxicillin. I'm hoping that I'll start to feel a little better with less abx on board. The sad thing is that this is just the beginning. I get a few weeks' 'break', that is, if you call taking 500 mg of azithromycin for a month a break, and then we'll be adding more stuff in and perhaps increasing the zith. UGH!!!
I've been really exhausted and sore. My armpits have been really tender and wearing a bra is painful. No, I don't wear underwires, either. I discovered today that my rice filled hot pack feels nice on it. Doesn't completely take away the pain, but it is very soothing feeling.
Yesterday I had a bunch of gastric effects. Noticeable pain and a little diarrhea. Today it was better. I find it interesting how each day has been different.
I'm trying to figure out what to do when I'm too tired to be up and around, yet not tired enough to fall asleep. I tried listening to an audiobook and podcast, but I must have been in the wrong mood or didn't get the right ones or something cuz they didn't really do much for me and were almost irritating. Perhaps today would have been a better day to try and fall asleep.
I did figure out how to knit lying down though! I need an extra pillow under my head and a one under each elbow. Maybe I'll be able to do more of that.
I'm thinking of making list and basket or something of things I'll need when I need to be in bed.
Water
snacks
knitting
books
iPhone/iPad
laptop
cat and dog
Its really nice how my pets like to hang around me. Very comforting. They each have their own energy and it actually benefits me. If I'm in a lot of pain and can touch both Daisy and Shane (like with a hand and foot), I feel HUGE improvements. Daisy has a very sweet and healing, nurturing sort of energy and Shane is very grounding. And Pif is really starting to spend a lot of time with me when I'm in bed. I find it awesome and sweet! I've really missed having cats and am SO glad that Jared thought to finally ask his friends who breed bengals if they had a cat that would fit our situation. He told me we'd be getting one of their retired breeders on my birthday! He really doesn't have much of an allergic reaction to her at all. I'm so blessed!! I'm still trying to figure out exactly what kind of energy Pif adds to the mix, but I'm leaning towards energized and vibrant.
Reality has been hitting me and its very daunting. I've just had 5 days of treatment and this may have to go on for YEARS! I haven't been able to empty or fill the dishwasher in one sweep! There's just so many things that are hard for me to accept. To write it all out is just too depressing. I'm trying to focus on the positives and remain hopeful and upbeat. But I imagine I'll be going through even darker times than this.
I feel as if I need to let go of ALLLLL expectations and just do what I can and not have to try and live up to anything. No housework, no mothering, no wifeing, no socializing. Just existing. And that's a huge challenge, maybe even moreso than the fight within my body. I have responsibilities! I can't just drop them like a hot potato! And none of those things are things that are disposable, yanno? I CAN'T just ignore my 3 year old! And the house needs to have at least a certain level of cleanliness to live in it comfortably. I can't ignore my husband's needs, and not doing anything for my own enjoyment would lead to bad things too.
Its scary.
But you have to go THROUGH the forest to get out of it, right? There WILL be good days, glimmers of light. And the end. I don't know what the path looks like yet and where the final destination will be.
I've been really exhausted and sore. My armpits have been really tender and wearing a bra is painful. No, I don't wear underwires, either. I discovered today that my rice filled hot pack feels nice on it. Doesn't completely take away the pain, but it is very soothing feeling.
Yesterday I had a bunch of gastric effects. Noticeable pain and a little diarrhea. Today it was better. I find it interesting how each day has been different.
I'm trying to figure out what to do when I'm too tired to be up and around, yet not tired enough to fall asleep. I tried listening to an audiobook and podcast, but I must have been in the wrong mood or didn't get the right ones or something cuz they didn't really do much for me and were almost irritating. Perhaps today would have been a better day to try and fall asleep.
I did figure out how to knit lying down though! I need an extra pillow under my head and a one under each elbow. Maybe I'll be able to do more of that.
I'm thinking of making list and basket or something of things I'll need when I need to be in bed.
Water
snacks
knitting
books
iPhone/iPad
laptop
cat and dog
Its really nice how my pets like to hang around me. Very comforting. They each have their own energy and it actually benefits me. If I'm in a lot of pain and can touch both Daisy and Shane (like with a hand and foot), I feel HUGE improvements. Daisy has a very sweet and healing, nurturing sort of energy and Shane is very grounding. And Pif is really starting to spend a lot of time with me when I'm in bed. I find it awesome and sweet! I've really missed having cats and am SO glad that Jared thought to finally ask his friends who breed bengals if they had a cat that would fit our situation. He told me we'd be getting one of their retired breeders on my birthday! He really doesn't have much of an allergic reaction to her at all. I'm so blessed!! I'm still trying to figure out exactly what kind of energy Pif adds to the mix, but I'm leaning towards energized and vibrant.
Reality has been hitting me and its very daunting. I've just had 5 days of treatment and this may have to go on for YEARS! I haven't been able to empty or fill the dishwasher in one sweep! There's just so many things that are hard for me to accept. To write it all out is just too depressing. I'm trying to focus on the positives and remain hopeful and upbeat. But I imagine I'll be going through even darker times than this.
I feel as if I need to let go of ALLLLL expectations and just do what I can and not have to try and live up to anything. No housework, no mothering, no wifeing, no socializing. Just existing. And that's a huge challenge, maybe even moreso than the fight within my body. I have responsibilities! I can't just drop them like a hot potato! And none of those things are things that are disposable, yanno? I CAN'T just ignore my 3 year old! And the house needs to have at least a certain level of cleanliness to live in it comfortably. I can't ignore my husband's needs, and not doing anything for my own enjoyment would lead to bad things too.
Its scary.
But you have to go THROUGH the forest to get out of it, right? There WILL be good days, glimmers of light. And the end. I don't know what the path looks like yet and where the final destination will be.
Friday, June 10, 2011
Day 3
I'm trying to come up with a clever entry line, and my mind is performing like the rest of me. In a word, flat. My energy level is very low. Getting up and walking to another room makes me feel like I need to rest. I'm not in too much pain, just random aches, and my lymph nodes are starting to get sore too. My armpits wrapping around to the front across my chest and even a bit in my groin (I'm pretty sure there's a big bunch of lymph nodes there too, right?) feel sore and heavy, very tender. Occasionally my head will hurt, but in an atypical (for me) way. All of these things are very fluid and changing. I feel as if I'm on the verge of coming down with a fever. I think the worst part of it is that I'm too tired to do much at all, but not tired enough to fall asleep. So I lay down and am just awake.
A lot of thoughts are going through my mind. This is really boring! I'm wondering if this is what the next several months of my life will be like. I'm reminding myself that all of it is good. My mind even went to childbirth memories and reminded me that my body knows exactly what to do and that I should just lie back and let it do its thing. Let's continue to let the bodies hit the floor!
While the thought of feeling this way for a long time is rather daunting, I'm encouraged by it. If I didn't have a load of bacteria in my body for the antibiotics I'm taking to kill, I wouldn't be feeling this way, right? Well, lets see.... the side effects for amoxicillin, probenecid and azithromycin are:
Its so validating!
And yeah, I'm very happy to report that the only thing these meds have done to my digestive system is make it a little bit noisy. I don't mean I've turned into a fart monster, just that there's lots of gurgling and noises - borborygmy! Seriously, that's a word. I learned it in vet tech school in the large animal medicine class in relation to horses. I know, it has nothing to do with the topic at hand, but when I remember cool stuff like that I want to share it, cuz it makes me feel good! It reminds me that no, I haven't lost ALL of my knowledge and I'm not dumb, even if I do have trouble remembering what a conversation is about or can't follow and understand a concept.
So anyway..... The only other listed side effect I've noticed is decrease of appetite. And frankly, its about time!!! *LOL*
What else was I gonna say? While I was lying down resting I was thinking of all kinds of things to put here. And can I remember them? nope.....
Actually, I was thinking about setting up a bit of a nest for me, where I can rest yet have little things to entertain me. I have to figure out how to knit in bed, and use the computer in bed. I'm not sure if I have the brain power to read unfortunately. Cuz if I did, I'd be set! I'll need water, cuz I've been really thirsty lately. I'm not much of a tv fan.
But, this little stint is only going to be 5 days long. Then I'll just be taking the azithromycin until I see the doc again (first week of July), and we'll change things up then. Maybe the fluish symptoms will back off once I'm off the amox/probenecid? Amoxicillin is bacteriolytic, killing bacteria by messing up the cell walls and causing them to disintegrate. Its a pretty quick acting thing. Azithromycin on the other hand is bacteriostatic, specifically disrupting the bacteria's protein synthesis and stopping its growth, so it takes a longer time to notice its effects.
I think I may have to brush up on my immunology (yeah, I took a class on that too!). I'd like to know what's actually going on in my lymph nodes and how my body is working with the drugs.
A lot of thoughts are going through my mind. This is really boring! I'm wondering if this is what the next several months of my life will be like. I'm reminding myself that all of it is good. My mind even went to childbirth memories and reminded me that my body knows exactly what to do and that I should just lie back and let it do its thing. Let's continue to let the bodies hit the floor!
While the thought of feeling this way for a long time is rather daunting, I'm encouraged by it. If I didn't have a load of bacteria in my body for the antibiotics I'm taking to kill, I wouldn't be feeling this way, right? Well, lets see.... the side effects for amoxicillin, probenecid and azithromycin are:
- headache
- upset stomach
- vomiting
- loss of appetite
- dizziness
- diarrhea
- stomach pain
- mild skin rash
Its so validating!
And yeah, I'm very happy to report that the only thing these meds have done to my digestive system is make it a little bit noisy. I don't mean I've turned into a fart monster, just that there's lots of gurgling and noises - borborygmy! Seriously, that's a word. I learned it in vet tech school in the large animal medicine class in relation to horses. I know, it has nothing to do with the topic at hand, but when I remember cool stuff like that I want to share it, cuz it makes me feel good! It reminds me that no, I haven't lost ALL of my knowledge and I'm not dumb, even if I do have trouble remembering what a conversation is about or can't follow and understand a concept.
So anyway..... The only other listed side effect I've noticed is decrease of appetite. And frankly, its about time!!! *LOL*
What else was I gonna say? While I was lying down resting I was thinking of all kinds of things to put here. And can I remember them? nope.....
Actually, I was thinking about setting up a bit of a nest for me, where I can rest yet have little things to entertain me. I have to figure out how to knit in bed, and use the computer in bed. I'm not sure if I have the brain power to read unfortunately. Cuz if I did, I'd be set! I'll need water, cuz I've been really thirsty lately. I'm not much of a tv fan.
But, this little stint is only going to be 5 days long. Then I'll just be taking the azithromycin until I see the doc again (first week of July), and we'll change things up then. Maybe the fluish symptoms will back off once I'm off the amox/probenecid? Amoxicillin is bacteriolytic, killing bacteria by messing up the cell walls and causing them to disintegrate. Its a pretty quick acting thing. Azithromycin on the other hand is bacteriostatic, specifically disrupting the bacteria's protein synthesis and stopping its growth, so it takes a longer time to notice its effects.
I think I may have to brush up on my immunology (yeah, I took a class on that too!). I'd like to know what's actually going on in my lymph nodes and how my body is working with the drugs.
Thursday, June 9, 2011
Talk with doctor
The doctor just returned my call, and upon explaining my symptoms from last night, she said that yes, it does sound like I killed some bugs!
I'm to get a urine sample today or tomorrow, cuz we want to catch the dead bugs, and it takes a bit for them to clear the blood stream. So hopefully, we'll get some!! And I'm to continue the abx (antibiotics, for short - I'll be using that abbreviation a lot), and get samples on days 5 and 6 like planned.
She mentioned something about plaquenil, and how I"ll probably be put on it in the future. I wonder how that fits into lyme treatment.... I'll be looking into it so I can be ahead of the game! My next appt with her is July 7th.
I'm doing a big happy dance!!!
Oh and I'm not feeling flu-ish this morning. Just a few random aches that move and stuff.
I'm to get a urine sample today or tomorrow, cuz we want to catch the dead bugs, and it takes a bit for them to clear the blood stream. So hopefully, we'll get some!! And I'm to continue the abx (antibiotics, for short - I'll be using that abbreviation a lot), and get samples on days 5 and 6 like planned.
She mentioned something about plaquenil, and how I"ll probably be put on it in the future. I wonder how that fits into lyme treatment.... I'll be looking into it so I can be ahead of the game! My next appt with her is July 7th.
I'm doing a big happy dance!!!
Oh and I'm not feeling flu-ish this morning. Just a few random aches that move and stuff.
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