I wrote this up on the 18th, but sat on it for awhile cuz I had already posted a bunch at that point. Today seems like a good day to publish it, because again, I'm not feeling well enough to be out of bed.
Spending so much time in bed is getting boring and lonely. I've been feeling rather isolated by my inability to function in the world. I haven't been out of the house since Friday. As I lie in bed trying to rest, I can't help but think one thing.
"I just want to hold someone's hand."
I don't want to have to talk, or do anything. I just want quiet, comforting companionship.
The dogs have been by my side nearly the whole time I'm in bed. It helps to reach a hand or foot out to touch them. But its not the same as a human.
As I long for this, my mind wanders back to when my grandpa was really sick in the hospital. I was only 8, and he was paralyzed on half of his body and couldn't talk. But my mom told me to go ahead and go up to him and hold his hand. That he would would like it. I've held other people's hands when they were sick and dying.
Being in this lonely place lets me see the gift I gave them. I didn't expect them to do anything, and I didn't do anything but let them know I was there with them, that they weren't alone.
*******
As I set the computer aside for a cry just now, I can feel that I'm not alone either. Someone is holding my right hand, and someone else has their arm around my shoulder. I wouldn't be surprised if its both of my grandpas, or a specific friend or two. And Daisy jumps up on the bed and licks away my tears.
*******
Its not easy, just 'being' with someone who isn't able to do more than just exist. But its powerful and peaceful for both parties. It can feel awkward at first, but I'm guessing that's because not many of us know how to just sit and be, without doing anything else. Once you relax and appreciate the presence of the other person, you are able to open up to what is really happening. The language of the heart is spoken in these silences, the quiet still places where people can just exist with one another.
Of course, you don't have to be with a sick person in the hospital to do this. I'm sure we've all spent time with someone where we could just 'be', that we've heard the heart speak. However, I think that consciously choosing to be still with someone who is very ill is one way to experience this gift. I hope that you are able to experience this quiet and still miracle in your lifetime too.
Monday, July 25, 2011
Monday, July 18, 2011
Define "Tolerating"
I finally put in a call to my LLMD today about my symptoms and how I've been doing on the plaquenil. She liked how I figured out to take it at suppertime so I can sleep through most of the yuck from it. She also asked if I was tolerating it. And I'm not sure.
Right about now, I've spent most of the last 24 hours in bed. I laid down when Lizzie did in the afternoon and just haven't felt up to being up and responsible for anything. I was up last night to eat supper and that's about it. This morning I spent time in the living room in my chair watching Labyrinth with Lizzie for the first time, and then I went back to lay down. I wasn't feeling well enough to stand in the kitchen long enough to make myself a breakfast shake or get my meds. I got up again for lunch and to go to the bathroom and get drinks. But I've been lying in bed, trying to remain entertained, yet resting. And so far things on the computer have been interesting, but I feel like I need to rest my brain. Sitting up in bed to give my body a different position while typing this entry is exhausting.
Perhaps its time to spend a few days with Grandma. I don't have another appt until Thursday, so Lizzie and I could go up there and she could be entertained and taken care of well, and I could just lie there and rest. And Jared can work and not have to do double duty. I'll have to talk to everyone about that. My only concern is the heat, how poorly I do in it and the sun and how there isn't good AC in the truck. Maybe if we leave in the evening tonight it will be easier.
Regarding tolerating, I asked the ladies on my chronic illness forum that I haunt ALLLLL the time, how they define it. One said that it could be looked at as looking for "permission to stop treatment" vs "reassurance that its ok to continue". As miserable as I am, at this point I'm still on the reassurance side. Another said that she looks at tolerating something by seeing if she can still take care of herself and the animals that depend on her. I'm just barely squeaking by on that one, but I can't really take care of the animals and Button. Others said they define tolerating a med by the benefits of treatment outweighing the side effects. This one got me thinking.....
In my case, the side effects are nausea, headaches, stomach pain, and sun sensitivity for the most part. The results of treatment are killing the bugs. Yet killing the bugs cause effects in and of itself. I experience increased pain in my joints, flu-like aches, feverish feeling, swollen, painful lymph nodes and exhaustion and increased brain fog. Add all of that up and its pretty miserable.
But do I want to continue to let the Borellia have free reign over my body? Do I want to continue to deteriorate and become more disabled than I already am? I give a resounding HELL NO!!!!!
It reminds me a lot of cancer. Now granted, I haven't ever had it, so I don't really *know* what its like, but I do know a few things. The chemo drugs are toxic and cause some pretty yucky side effects. Yet when you take chemo drugs, they don't discriminate and only kill the cancer cells. Every cell that is dividing in your body dies. And this makes you really sick too. Its a double whammy. Its not the drugs themselves that cause your hair to fall out, its the cells in your hair follicles dying. Its a result of the treatment, not a side effect from the drugs.
How do you choose when treatment results land you in bed and unable to care for your family? I guess ultimately, cancer patients know that if they don't treat the cancer, they'll die. Is lyme disease a fatal one? Not immediately, no. But the lyme buggers can and DO cause permanent damage to your heart and nerves and joints if they're left to do their thing for too long. If they dig into the wrong places in your body, the damage they leave can eventually kill you, a very long, agonizing time later.
So I'm at the point where I'm seeing the choice I have to make. I'm seeing what the forest I have to travel through looks like. Its dark and rather scary. But if I want my life to improve, I have to keep going.
Right about now, I've spent most of the last 24 hours in bed. I laid down when Lizzie did in the afternoon and just haven't felt up to being up and responsible for anything. I was up last night to eat supper and that's about it. This morning I spent time in the living room in my chair watching Labyrinth with Lizzie for the first time, and then I went back to lay down. I wasn't feeling well enough to stand in the kitchen long enough to make myself a breakfast shake or get my meds. I got up again for lunch and to go to the bathroom and get drinks. But I've been lying in bed, trying to remain entertained, yet resting. And so far things on the computer have been interesting, but I feel like I need to rest my brain. Sitting up in bed to give my body a different position while typing this entry is exhausting.
Perhaps its time to spend a few days with Grandma. I don't have another appt until Thursday, so Lizzie and I could go up there and she could be entertained and taken care of well, and I could just lie there and rest. And Jared can work and not have to do double duty. I'll have to talk to everyone about that. My only concern is the heat, how poorly I do in it and the sun and how there isn't good AC in the truck. Maybe if we leave in the evening tonight it will be easier.
Regarding tolerating, I asked the ladies on my chronic illness forum that I haunt ALLLLL the time, how they define it. One said that it could be looked at as looking for "permission to stop treatment" vs "reassurance that its ok to continue". As miserable as I am, at this point I'm still on the reassurance side. Another said that she looks at tolerating something by seeing if she can still take care of herself and the animals that depend on her. I'm just barely squeaking by on that one, but I can't really take care of the animals and Button. Others said they define tolerating a med by the benefits of treatment outweighing the side effects. This one got me thinking.....
In my case, the side effects are nausea, headaches, stomach pain, and sun sensitivity for the most part. The results of treatment are killing the bugs. Yet killing the bugs cause effects in and of itself. I experience increased pain in my joints, flu-like aches, feverish feeling, swollen, painful lymph nodes and exhaustion and increased brain fog. Add all of that up and its pretty miserable.
But do I want to continue to let the Borellia have free reign over my body? Do I want to continue to deteriorate and become more disabled than I already am? I give a resounding HELL NO!!!!!
It reminds me a lot of cancer. Now granted, I haven't ever had it, so I don't really *know* what its like, but I do know a few things. The chemo drugs are toxic and cause some pretty yucky side effects. Yet when you take chemo drugs, they don't discriminate and only kill the cancer cells. Every cell that is dividing in your body dies. And this makes you really sick too. Its a double whammy. Its not the drugs themselves that cause your hair to fall out, its the cells in your hair follicles dying. Its a result of the treatment, not a side effect from the drugs.
How do you choose when treatment results land you in bed and unable to care for your family? I guess ultimately, cancer patients know that if they don't treat the cancer, they'll die. Is lyme disease a fatal one? Not immediately, no. But the lyme buggers can and DO cause permanent damage to your heart and nerves and joints if they're left to do their thing for too long. If they dig into the wrong places in your body, the damage they leave can eventually kill you, a very long, agonizing time later.
So I'm at the point where I'm seeing the choice I have to make. I'm seeing what the forest I have to travel through looks like. Its dark and rather scary. But if I want my life to improve, I have to keep going.
Sunday, July 17, 2011
SpiroChicks: My Tick Bite: A Quarter Million Dollar Nightmare
I subscribe to this blog and there was a very poignant and educational post in my email today. I wanted to share it, because I know there are a lot of people following my blog and it contains info about tick bite and lyme prevention that everyone should know, especially people living in lyme endemic areas.
SpiroChicks: My Tick Bite: A Quarter Million Dollar Nightmare: "By Alix, SpiroChicks Co-founder Twenty years ago this month, a tick bit my ankle. Five years later while in charge of a worldwide group a..."
SpiroChicks: My Tick Bite: A Quarter Million Dollar Nightmare: "By Alix, SpiroChicks Co-founder Twenty years ago this month, a tick bit my ankle. Five years later while in charge of a worldwide group a..."
Thursday, July 14, 2011
Second LLMD appt and playing with plaquenil
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.
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.
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.
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