My last appt has brought me lots of med changes. We doubled the zithromax, so I'm now taking a gram of it a day. We added back in the amoxicillin, like in the antibiotic challenge test at the very beginning - 1 gram, 3 times a day. The probenecid will probably be added in next month provided that everything is tolerated.
I asked her what her definition of tolerate is. According to her, I am tolerating things provided I am not vomiting or having diarrhea many times every day. I have to be completely honest and say that I was a little disappointed. *LOL* But, at the same time, it IS good to know where she draws the line. Clearly, I am not to that point yet, so we forge ahead!
Next month I will also most likely be starting an herb called artemesia. It works against babesia as well as borrelia. I am to do some research, learning about it, looking at different protocols for dosing info and stuff, and seeing what form is available to me. Interestingly enough, artemesia is wormwood. And distilled wormwood makes absinthe. You know, the liquor that has the reputation of causing hallucinations and craziness! I find it intriguing that absinthe can have (depending on how its made) those negative effects on us and it comes from the same plant that kills babesia. It is also used in some malaria treatments as well.
Both babesia and the critter that causes malaria are protozoans that live in blood cells. So a lot of the treatments are the same or similar. Hence the plaquenil I'm on, being used as an antimalarial, and the artemesia. And, interesting still is that they both can help fight borrelia too. I don't know about the mechanisms of artemesia yet, but plaquenil raises the pH of the vacuoles in cells, which makes them inhospitable to borrelia.
We added in the amoxicillin to target the form of borrelia that has a cell wall. The zithromax targets the form that doesn't have a cell wall, and plaquenil gets the cyst form out of the cells. So I'm really hitting them with big guns now. When we add in the artemesia and probenecid (to raise the plasma level of amoxicillin), I imagine they'll really be unhappy. YAY!!!!
Another big change that I have been so excited about is that I now am taking a thyroid supplement too! For a decade, I have been wondering if a lot of my symptoms have been from an underactive thyroid, or messed up thyroid metabolism. And finally my lyme doctor knew to look at what is going on with my body instead of focusing on lab results. She had me take my temperature 3 times a day for a month (I have to admit I probably forgot as many times as I remembered) and it turns out that my basal body temp is a good degree below normal (98.6). So she gave me a script for Armour thyroid. It is not synthroid, a synthetic form of T4, but rather a mix of both T3 and T4 that comes from ground up pig thyroid. Its the actual hormone, not a manufactured version of it. It kind of grosses me out a little, but if you really think about it, its no different than eating meat. Its not like I'm eating a raw organ - its been processed and stuff, and we use animal products for practically everything. I take it twice a day, an hour before I eat anything. I'm also supposed to continue to do the temp thing, probably to see how my metabolism responds to it.
So far, I do feel like I have more energy, a higher desire to move and get up and do things. However, when I actually get up to do stuff, my body protests. While the underlying drive to do things is higher, my body's capabilities to carry out tasks has not improved. So its kind of frustrating, but I deal. My temp has increased a bit too. A day or two after I started, it jumped almost a whole degree! Usually, when my temp goes up like that, I feel sick. Not this time! So its definitely doing something. However, the last few days, it has gone down a bit. So maybe my temp increased because of die off or something.
These days I live by the clock. I bring a thyroid pill to bed with me, so I can take it before I get up, so I don't have to wait as long to eat breakfast. An hour after I take that, I take my morning pile of pills with a protein shake made with kefir - a great source of probiotics (pbx). Antibiotics (abx) can't be taken with pbx, or you might as well not even take the pbx. You can take pbx an hour before abx, or 2 hours after abx. Its so complicated! So I can't take my morning abx with the rest of my morning pills because of the pbx I have with breakfast. An hour after breakfast I take my morning abx. Since I have a lower dose of pbx, I take it 3 times a day, so I have another dose 2 hours or so after the morning abx. Around 2 or 3, I take my second thyroid pill and another dose of pbx. At 4 or so is my afternoon meds and abx. I have to be careful of the timing of the thyroid and afternoon abx because I need to take food with the abx so I don't get as sick, but the thyroid needs an empty tummy! By 6, its another dose of pbx. Then around 8 I take my night pile of pills. Is your head spinning yet? *LOL* Thankfully, I have found a cool iPhone app that helps me set up a series of alarms and a checklist to keep me on track. But I just about had a meltdown trying to figure out the correct sequence and timing at the beginning!
I am also supposed to add in a magnesium supplement, but my list of meds is long enough as it is! I don't want to have to keep track of yet another thing. Besides, my pill box won't fit any more pills! I'm gonna need a new, big one soon. One with multiple boxes for each day. *sigh* Its rather depressing to think about.
But, beside the med side effects and die off side effects, I have been noticing improvements!!!
My air hunger and chest pains are almost all gone. My night sweats are almost gone. My anxiety is lowered. My headaches are drastically lowered. And my pain feels different. Its more migratory and fickle, not quite as anchored down in my body. I don't think I'm quite as hypersensitive about things either.
So its definitely great to see some progress when the meds make me feel so gross and tired. It makes it feel worth it and gives me some hope that some day my life and abilities will be much more reasonable.
Showing posts with label antibiotics. Show all posts
Showing posts with label antibiotics. Show all posts
Wednesday, August 31, 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.
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.
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.
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