The other day I was on Facebook and clicked on a blog post someone else linked to. I don't remember the exact content, but the blog was a parenting one, with lots of posts about breastfeeding. I ended up clicking around and reading a lot. And I had a hard time.
Because according to Our Plan, now is the time we were going to start trying for baby number two. I was (am!) a stay at home mom, who plans to homeschool. I breastfed Lizzie until she was 19 months old and stopped because I needed to start a medication for my fibromyalgia symptoms. I had planned to let her decide when to wean. I kind of have a feeling we'd still be at it if my diseases hadn't interfered.
I took Lizzie to the library every week for storytime, and joined a MeetUp group for SAHMs to get their kids together to play. I wanted to enroll her in community ed classes and take her to swimming lessons. We would go to the park and go for walks and bike rides. I made my own babyfood. I had planned to do everything I could to enrich my daughter's life. And there was going to be probably 3 kids eventually.
I mourn the kind of mom I was and who I wanted to be. I mourn the family we wanted. It plays through my mind like a home video with bright, cheery scenes full of happy children. My reality seems dull and listless in comparison. I feel as if I've deprived Lizzie of a great many things, including siblings.
Instead, she gets a couch momma, who not only doesn't have the energy to play with her, but can't even go into the sun. Her days are full of TV, her toys and her mom instead of children to play with.
I try to remember all that I DO give her. She gets a mom who is always there and has taught her how to be caring and loving. Even though we can't go go go like I had always envisioned, she does know that she's very loved, and that counts for probably more than I give it credit for.
Saturday, October 1, 2011
Monday, September 26, 2011
A little light and its shadow
Instead of only talking about my lyme treatment, I thought I'd share a bit about what its like to do things when you're this sick. This weekend some friends of ours got married. I've been looking forward to getting out and seeing people for a good month, planning things out so I wouldn't be overextended come the actual date.
Festivities started with a bachelorette party on Thursday. Plans were to go to a shooting range, have dinner and then go out to a strip club. I had already decided to skip the shooting range because it would have been too loud for me to enjoy. I planned on joining up with the group for dinner, and play it by ear for how late I'd be out. It was going to be good enough to even just go out to dinner.
That day came and I was feeling feverish and wobbly/weak. When it was time for supper, and I realized I wasn't feeling well enough to make food for my family, I had to accept that I was too sick to go out too. I was pretty irritated and disappointed, but I knew that if I had gone out, I would have been VERY miserable and the evening wouldn't have been enjoyable.
The day of the wedding came and I decided that I was going to get ready in stages, so that there would be plenty of time for me to recover between tasks. I washed my hair in the morning, and it left my limbs feeling like jello. Later, I got dressed, and then I realized that I was going to lay down before going and I wasn't going to rest in my dress! Jared was an usher, so he had to be there early, so Lizzie and I came later, but it also meant that I had to get both her and I ready by myself.
I got up from my rest early and got dressed and did my hair. I woke her up from her nap and got her in her dress and brushed her hair. We put on makeup together and then it was time to go. I had paced myself well! I was proud. THen we couldn't find Lizzie's shoes. In the process of looking for them, I left the door to the porch open, and the cat went out there. So then we had to get her back in the house too! I did not budget energy for these things! When we got to the car, I was exhausted.
I finally got a handicapped parking tag and I was SOOOOOOOOO thankful to have it! I was able to park right by the door instead of having to walk through the entire lot to get into the door of the building. It really saved me. As it was, I was moving pretty dang slow by the time we got to our seats. It was good to see friends, but it was rather embarrassing to hobble past them all with my cane at an agonizing pace. Nobody gave me funny looks or anything, but my mind came up with all kinds of not very nice things that I thought they were thinking about me. I'm still learning how to stop doing that, and its really tough.
The ceremony was beautiful and so were the brides. Afterwards, we walked down a long corridor to where the reception was held. Again, I was moving like a turtle stuck in molasses in January. I always walk at the very edge of halls and stuff when I'm moving slow so that people can pass me. Normally I feel good about it - like I'm being polite and considerate for those around me. This time it felt painful as the people I used to keep up with in my prime passed me by.
We got to the reception room and the first thing I looked for was a chair. Found one over in the corner and plopped down to catch my breath. They had a mirror ball going and every few seconds I got a flash in my eyes. It was painful. So, I dug out my sunglasses, deciding to look like a freak instead of getting a migraine. Although, it *just* occurred to me - my husband looks cool in his sunglasses, even if its indoors, so I probably looked like a glamour queen with a hangover in mine, not a freak (those damn negative voices!). Once someone came over and stood between me and the mirror ball, I took the sunglasses off.
There were a number of times when I felt left out because everyone was standing and talking, and I needed to sit. Its really hard to include someone in a conversation who's face isn't at the same level as the rest of the people! Yes, many of my friends came over and talked to me, told me how good it was to see me out and that they missed me. I was very grateful that I wasn't in fact invisible over in the corner.
I know it sounds like all I'm doing is complaining. But its more sharing the differences of my reality. And yeah, my reality isn't all fun and roses. Regardless, I had the best time that I've had in a LONG time!
The food was great, dessert was INCREDIBLE. I haven't enjoyed cheesecake that much in a LONG time (I'm on a low carb diet). I savored every bite and cataloged it for later. In that moment I was in heaven! It was so neat watching Lizzie dance like a maniac, and watch her charm nearly every person out onto the dance floor at one time or another. She had a boy chasing her around, and it was rather cute. All my friends loved her and had a lot of fun with her.
I went onto the dance floor 2 or 3 times, maybe dancing a total of a minute through the night. But I wiggled and grooved in my chair the rest of the time, wishing I could be out there with my girl and my friends. Had my body been able, I would have been dancing the whole night. I was half tempted to bring my chair onto the floor so I could dance with everyone anyway. As much as I would have felt like a sore thumb, I'm guessing people would have gotten a kick out of it.
And you know, I bet that most of my reservations of bringing my gimp out in public have to do with my own poor self-esteem rather than what people are actually thinking. This is something I should talk about more in therapy. Its part of the whole feeling ashamed of my disabilities.
Regardless of all those negative things my mind was throwing at me, I focused on all the fun and the joy and novelty of the evening. I got to see people I haven't seen in ages and I got to get out of the four walls of my house for something other than an appt. I lived each moment to the fullest that I could, reveling in all of it.
I relived some of my memories yesterday while I was lying in bed nursing my migraine. I also realized that all of my payback pain was from washing my hair! My trapezius muscles were screaming from where they attach at the base of my skull all the way down to where they end at the middle back, and out to each shoulder. While I'm relieved that there didn't seem to be a price for that much fun beyond the massive terrible headache, its really frustrating to know that something as simple as washing your hair causes that much pain and suffering. But, as I was lying there trying to get away from the pain, I had a wonderful evening of events to visit again, and it was one of the easiest times I've had dealing with a migraine.
Knowing that I'm still able to get out and enjoy myself makes such a huge difference in my prison of daily life! I trust that some day I'll be able to do it more often and with a need for less gimpage! But hell, even if I'm this much of a gimp for the rest of my life, I will learn to embrace it and be thankful that there are things that help me.
Festivities started with a bachelorette party on Thursday. Plans were to go to a shooting range, have dinner and then go out to a strip club. I had already decided to skip the shooting range because it would have been too loud for me to enjoy. I planned on joining up with the group for dinner, and play it by ear for how late I'd be out. It was going to be good enough to even just go out to dinner.
That day came and I was feeling feverish and wobbly/weak. When it was time for supper, and I realized I wasn't feeling well enough to make food for my family, I had to accept that I was too sick to go out too. I was pretty irritated and disappointed, but I knew that if I had gone out, I would have been VERY miserable and the evening wouldn't have been enjoyable.
The day of the wedding came and I decided that I was going to get ready in stages, so that there would be plenty of time for me to recover between tasks. I washed my hair in the morning, and it left my limbs feeling like jello. Later, I got dressed, and then I realized that I was going to lay down before going and I wasn't going to rest in my dress! Jared was an usher, so he had to be there early, so Lizzie and I came later, but it also meant that I had to get both her and I ready by myself.
I got up from my rest early and got dressed and did my hair. I woke her up from her nap and got her in her dress and brushed her hair. We put on makeup together and then it was time to go. I had paced myself well! I was proud. THen we couldn't find Lizzie's shoes. In the process of looking for them, I left the door to the porch open, and the cat went out there. So then we had to get her back in the house too! I did not budget energy for these things! When we got to the car, I was exhausted.
I finally got a handicapped parking tag and I was SOOOOOOOOO thankful to have it! I was able to park right by the door instead of having to walk through the entire lot to get into the door of the building. It really saved me. As it was, I was moving pretty dang slow by the time we got to our seats. It was good to see friends, but it was rather embarrassing to hobble past them all with my cane at an agonizing pace. Nobody gave me funny looks or anything, but my mind came up with all kinds of not very nice things that I thought they were thinking about me. I'm still learning how to stop doing that, and its really tough.
The ceremony was beautiful and so were the brides. Afterwards, we walked down a long corridor to where the reception was held. Again, I was moving like a turtle stuck in molasses in January. I always walk at the very edge of halls and stuff when I'm moving slow so that people can pass me. Normally I feel good about it - like I'm being polite and considerate for those around me. This time it felt painful as the people I used to keep up with in my prime passed me by.
We got to the reception room and the first thing I looked for was a chair. Found one over in the corner and plopped down to catch my breath. They had a mirror ball going and every few seconds I got a flash in my eyes. It was painful. So, I dug out my sunglasses, deciding to look like a freak instead of getting a migraine. Although, it *just* occurred to me - my husband looks cool in his sunglasses, even if its indoors, so I probably looked like a glamour queen with a hangover in mine, not a freak (those damn negative voices!). Once someone came over and stood between me and the mirror ball, I took the sunglasses off.
There were a number of times when I felt left out because everyone was standing and talking, and I needed to sit. Its really hard to include someone in a conversation who's face isn't at the same level as the rest of the people! Yes, many of my friends came over and talked to me, told me how good it was to see me out and that they missed me. I was very grateful that I wasn't in fact invisible over in the corner.
I know it sounds like all I'm doing is complaining. But its more sharing the differences of my reality. And yeah, my reality isn't all fun and roses. Regardless, I had the best time that I've had in a LONG time!
The food was great, dessert was INCREDIBLE. I haven't enjoyed cheesecake that much in a LONG time (I'm on a low carb diet). I savored every bite and cataloged it for later. In that moment I was in heaven! It was so neat watching Lizzie dance like a maniac, and watch her charm nearly every person out onto the dance floor at one time or another. She had a boy chasing her around, and it was rather cute. All my friends loved her and had a lot of fun with her.
I went onto the dance floor 2 or 3 times, maybe dancing a total of a minute through the night. But I wiggled and grooved in my chair the rest of the time, wishing I could be out there with my girl and my friends. Had my body been able, I would have been dancing the whole night. I was half tempted to bring my chair onto the floor so I could dance with everyone anyway. As much as I would have felt like a sore thumb, I'm guessing people would have gotten a kick out of it.
And you know, I bet that most of my reservations of bringing my gimp out in public have to do with my own poor self-esteem rather than what people are actually thinking. This is something I should talk about more in therapy. Its part of the whole feeling ashamed of my disabilities.
Regardless of all those negative things my mind was throwing at me, I focused on all the fun and the joy and novelty of the evening. I got to see people I haven't seen in ages and I got to get out of the four walls of my house for something other than an appt. I lived each moment to the fullest that I could, reveling in all of it.
I relived some of my memories yesterday while I was lying in bed nursing my migraine. I also realized that all of my payback pain was from washing my hair! My trapezius muscles were screaming from where they attach at the base of my skull all the way down to where they end at the middle back, and out to each shoulder. While I'm relieved that there didn't seem to be a price for that much fun beyond the massive terrible headache, its really frustrating to know that something as simple as washing your hair causes that much pain and suffering. But, as I was lying there trying to get away from the pain, I had a wonderful evening of events to visit again, and it was one of the easiest times I've had dealing with a migraine.
Knowing that I'm still able to get out and enjoy myself makes such a huge difference in my prison of daily life! I trust that some day I'll be able to do it more often and with a need for less gimpage! But hell, even if I'm this much of a gimp for the rest of my life, I will learn to embrace it and be thankful that there are things that help me.
Wednesday, August 31, 2011
Lots of Changes
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.
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.
Monday, August 8, 2011
It is real.
I am coming up on my third appt with the LLMD and have reached the time of the month when the borrelia hit the end of their regular life cycle and a whole bunch die at once. I am starting my third herx today and it brings a bunch of things.
As my body tingles and feels too hot, yet cold, and completely exhausted, too exhausted to even play my favorite Facebook game, Gardens of Time (which is a simple look for objects in a picture game), a myriad of feelings come to me. I get a little zing of YAY!!!! Those nasty buggers are dying!! WOOO HOOO!!!! DIE you bastards, DIE!!!!! And then I feel sad that feeling crappy is reason to celebrate. And its scary.
This month is a little different than the other times I've had the monthly herx (the borrelia's natural life cycle is about 30 days long and its very typical to have a large die off that happens every 28-30 days). I ran out of zithromax on Friday and haven't gotten the script refilled yet. I decided not to push for it because I thought a little break would be nice. It was! I felt comparably great yesterday! More energy, less stomach issues, I was more alert and wanting to do things than I have been since I started treatment.
So, today I get the fevery symptoms, right on schedule, even though my antibiotic load is less than usual. This can only mean one thing. I DO, unmistakably have lyme disease. There is no question in my mind. It is very real, I can't really deny it anymore. And it scares the bejeezus out of me. I remember learning about it in elementary school and being very scared about such a terrible disease that comes from a teeny tiny tick. That if you miss early diagnosis, it turns into a nasty chronic disease that causes damage so even if the infection is treated all the symptoms don't go away. And that it can affect your heart and brain. Very big and bad things to a young kid. Its big and bad to adults too. Understanding the disease more and seeing how much it has affected me doesn't make it less scary - its worse now.
I can't deny that I have at least a good year and a half of this kind of treatment. A year and a half at minimum of feeling this rotten and tired and unable to eat (which does have its benefits, I have to admit - at least when you're wanting to lose weight). I worry about when insurance will stop covering my meds and monthly blood tests to be sure my organs are handling treatment ok, and I worry about how we''ll pay for it all. I worry about my daughter having it too, because I was infected before Button was born, and lyme can be transmitted from mother to unborn child. That possibility makes me sick in and of itself.
But, I ahve to stay on the bright side, need to take life day by day instead of looking at the big picture. Sometimes I even need to just stay in the very moment. Remind myself that every day is different and that it is GOOD that i'm treating my lyme. That I will improve. If I look at it from the dark side, I won't be able to make it. Nobody could. So I'm trying to focus on the good things to help me along.
So, good things for today are:
the bugs are dying!
Lizzie was really really good this morning when I wasn't able to wake up
my husband is always just a holler down the stairs away
I have loving pets that keep me company while I rest
Lizzie still takes a big long nap in the afternoon so I can rest too
I have family, friends and neighbors who are very caring, loving and helpful
And I could go on and on, but this post is long enough already.
As my body tingles and feels too hot, yet cold, and completely exhausted, too exhausted to even play my favorite Facebook game, Gardens of Time (which is a simple look for objects in a picture game), a myriad of feelings come to me. I get a little zing of YAY!!!! Those nasty buggers are dying!! WOOO HOOO!!!! DIE you bastards, DIE!!!!! And then I feel sad that feeling crappy is reason to celebrate. And its scary.
This month is a little different than the other times I've had the monthly herx (the borrelia's natural life cycle is about 30 days long and its very typical to have a large die off that happens every 28-30 days). I ran out of zithromax on Friday and haven't gotten the script refilled yet. I decided not to push for it because I thought a little break would be nice. It was! I felt comparably great yesterday! More energy, less stomach issues, I was more alert and wanting to do things than I have been since I started treatment.
So, today I get the fevery symptoms, right on schedule, even though my antibiotic load is less than usual. This can only mean one thing. I DO, unmistakably have lyme disease. There is no question in my mind. It is very real, I can't really deny it anymore. And it scares the bejeezus out of me. I remember learning about it in elementary school and being very scared about such a terrible disease that comes from a teeny tiny tick. That if you miss early diagnosis, it turns into a nasty chronic disease that causes damage so even if the infection is treated all the symptoms don't go away. And that it can affect your heart and brain. Very big and bad things to a young kid. Its big and bad to adults too. Understanding the disease more and seeing how much it has affected me doesn't make it less scary - its worse now.
I can't deny that I have at least a good year and a half of this kind of treatment. A year and a half at minimum of feeling this rotten and tired and unable to eat (which does have its benefits, I have to admit - at least when you're wanting to lose weight). I worry about when insurance will stop covering my meds and monthly blood tests to be sure my organs are handling treatment ok, and I worry about how we''ll pay for it all. I worry about my daughter having it too, because I was infected before Button was born, and lyme can be transmitted from mother to unborn child. That possibility makes me sick in and of itself.
But, I ahve to stay on the bright side, need to take life day by day instead of looking at the big picture. Sometimes I even need to just stay in the very moment. Remind myself that every day is different and that it is GOOD that i'm treating my lyme. That I will improve. If I look at it from the dark side, I won't be able to make it. Nobody could. So I'm trying to focus on the good things to help me along.
So, good things for today are:
the bugs are dying!
Lizzie was really really good this morning when I wasn't able to wake up
my husband is always just a holler down the stairs away
I have loving pets that keep me company while I rest
Lizzie still takes a big long nap in the afternoon so I can rest too
I have family, friends and neighbors who are very caring, loving and helpful
And I could go on and on, but this post is long enough already.
Monday, July 25, 2011
I wanna hold your hand
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.
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 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.
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.
Wednesday, June 8, 2011
Annnnnnd..... I spoke too soon.
Very shortly after I posted my last post, I think I started my first herx reaction. My forearms and hands started hurting - aching down every bone and in the muscles. Not too intense, but noticable. And a few moments after that, I started feeling chilly cold (however, it was right after Jared opened the windows and its cool and breezy). I put on a shawl and some socks as I started to feel like I had the chills, and it soon turned into feeling too warm and flushed. You know the feeling, when you are coming down with something and you get the chills along with a fever. Its still all pretty mild, but I can tell I'm not feeling right.
What I'm referring to is a Jarisch-Herxheimer reaction, http://en.wikipedia.org/wiki/Herxheimer_reaction, (aka Herx) your body's reaction to toxins released by a bacterial die off. Essentially, the bits and pieces of dead spirochetes overload your immune system and you feel like you have the flu. Its a good thing cuz you know the bacteria are dying, but the toxins can also cause physical damage, so you need to be careful with them.
My dr told me that if and when I Herx (all but 15-20% of people with lyme have them), I need to stop my antibiotics until it passes and I should call her so we could discuss changing doses of meds. Since I'm doing the urine test protocol, I'm going to take tonight and tomorrow morning's doses and call her. I'm guessing that she didn't expect a reaction on the first day, so we'll see what she suggests. I have no clue!
I am known to have a pretty sensitive body. I react to meds in odd ways and at small levels. I remember when I had my night guard for my TMJ issues adjusted, the tech always said I was amazing at determining minute differences in where my teeth met. I think its just that I notice very small changes in my body. So it doesn't surprise me that I feel symptoms flaring up right away. Is it an actual, full blown herx? We'll see what my doc says tomorrow.
For now, I'm having a mix of emotions. I'm kind of excited, and validated! This would mean that there actually IS something in my body that is dying from the antibiotics! That even if I haven't tested positive for lyme and its co-infections, chances are good that's what we're dealing with. It means that at least one of the drugs is doing its job and killing those buggers! But at the same time, I'm kind of nervous and scared. Cuz yeah, I DO have lyme disease, and I bet this is just the tip of the iceberg. There's a LOT more of this to come, possibly years.
But I'm feeling optimistic and strong. I find myself yelling at them, egging them on. "Oh yeah? What, you're getting scared? YEAH!!!! You better be scared! DIE BORRELIA!!! There's plenty more where this came from! Bring it on you little fuckers, bring it on......."
What I'm referring to is a Jarisch-Herxheimer reaction, http://en.wikipedia.org/wiki/Herxheimer_reaction, (aka Herx) your body's reaction to toxins released by a bacterial die off. Essentially, the bits and pieces of dead spirochetes overload your immune system and you feel like you have the flu. Its a good thing cuz you know the bacteria are dying, but the toxins can also cause physical damage, so you need to be careful with them.
My dr told me that if and when I Herx (all but 15-20% of people with lyme have them), I need to stop my antibiotics until it passes and I should call her so we could discuss changing doses of meds. Since I'm doing the urine test protocol, I'm going to take tonight and tomorrow morning's doses and call her. I'm guessing that she didn't expect a reaction on the first day, so we'll see what she suggests. I have no clue!
I am known to have a pretty sensitive body. I react to meds in odd ways and at small levels. I remember when I had my night guard for my TMJ issues adjusted, the tech always said I was amazing at determining minute differences in where my teeth met. I think its just that I notice very small changes in my body. So it doesn't surprise me that I feel symptoms flaring up right away. Is it an actual, full blown herx? We'll see what my doc says tomorrow.
For now, I'm having a mix of emotions. I'm kind of excited, and validated! This would mean that there actually IS something in my body that is dying from the antibiotics! That even if I haven't tested positive for lyme and its co-infections, chances are good that's what we're dealing with. It means that at least one of the drugs is doing its job and killing those buggers! But at the same time, I'm kind of nervous and scared. Cuz yeah, I DO have lyme disease, and I bet this is just the tip of the iceberg. There's a LOT more of this to come, possibly years.
But I'm feeling optimistic and strong. I find myself yelling at them, egging them on. "Oh yeah? What, you're getting scared? YEAH!!!! You better be scared! DIE BORRELIA!!! There's plenty more where this came from! Bring it on you little fuckers, bring it on......."
So far, so good....
I hardly dare say it, but today has been one of my better days in a LOOOOONG time!
Like I mentioned earlier, I started my antibiotics today. 1 gram of amoxicillin with 500 mg probenecid 3 times a day and 250 mg of azithromycin twice a day. I decided to try taking all 3 meds at the same time in the morning to see if my stomach could handle it. Otherwise, I'd be taking pills all day.
Instead of having my protein shake at breakfast, I had a couple of eggs with my pills in hopes of keeping my tummy happier. And surprisingly, nothing really happened! A few burps was pretty much it. I kept waiting for the shit to hit the fan, and it hasn't yet. Not even when I took my mid-day dose on an empty stomach with water.
Perhaps after several days or weeks my stomach will be more grumpy. But I'll take today!
My whole body kind of feels a little different - almost more energized or something. Like a happy/feel good slight tingling in my arms and legs. I feel slightly lighter. I can breathe much better. Granted, today was literally 25-30 degrees cooler than yesterday....
Just a few moments ago I did notice that underneath my chin/jaw where it joins my neck is a little sore and tender. Like where my glands are. I can't remember their name though! Boy is that frustrating.... *sigh* What can you do though? I remember axial are armpits, popliteal are by the knees.... (at least in animals) But why is there a blank where the neck ones are? *shrugs* Anyway... I'll be keeping an eye on that soreness.
Like I mentioned earlier, I started my antibiotics today. 1 gram of amoxicillin with 500 mg probenecid 3 times a day and 250 mg of azithromycin twice a day. I decided to try taking all 3 meds at the same time in the morning to see if my stomach could handle it. Otherwise, I'd be taking pills all day.
Instead of having my protein shake at breakfast, I had a couple of eggs with my pills in hopes of keeping my tummy happier. And surprisingly, nothing really happened! A few burps was pretty much it. I kept waiting for the shit to hit the fan, and it hasn't yet. Not even when I took my mid-day dose on an empty stomach with water.
Perhaps after several days or weeks my stomach will be more grumpy. But I'll take today!
My whole body kind of feels a little different - almost more energized or something. Like a happy/feel good slight tingling in my arms and legs. I feel slightly lighter. I can breathe much better. Granted, today was literally 25-30 degrees cooler than yesterday....
Just a few moments ago I did notice that underneath my chin/jaw where it joins my neck is a little sore and tender. Like where my glands are. I can't remember their name though! Boy is that frustrating.... *sigh* What can you do though? I remember axial are armpits, popliteal are by the knees.... (at least in animals) But why is there a blank where the neck ones are? *shrugs* Anyway... I'll be keeping an eye on that soreness.
Tuesday, June 7, 2011
A letter to the enemy
Dear Borrelia burgdorferi,
You are an amazing creature. Very wily and tenacious, changing to at moment’s notice to evade attack. I admire your craftiness and will to flourish. When I learn how you are able to avoid death, I am in awe. In another war, I want you on my side.
I have given you a place to grow and flourish, meeting your needs and every whim. You have returned the favor by disabling me, affecting nearly every system in my body. I can no longer breathe without pain and effort. My heart beats rapidly. My brain does not function the way it used to. In addition to not being able to find words, I have a hard time concentrating and remembering things, even from sentence to sentence! I have trouble understanding new concepts. My nervous system has malfunctioned, creating many sensitivities, including light, sound, heat, smells, and touch. My eyes and ears are affected. And then there is the pain. Every joint in my body aches and crackles and pops. My muscles ache everywhere. My bones ache at times. Even my nerves send pain signals that don’t correspond to real damage or stimulus. I have suffered from depression and anxiety almost unrelentingly. I am dizzy and nauseous almost all the time and I tremble and tremor like someone with parkinson’s disease. You have taken my ability to work, be a competent housekeeper, mother and wife, and my ability to do many of the things I enjoy. None of this is acceptable. I NEED my life back. I DEMAND you leave before you do any more damage. This is MY life, and MY body. You are no longer welcome here.
Please return the favor by vacating my body as soon as possible. As of today, you are evicted from my body! You and your friends have LONG overstayed your welcome. You are to immediately pack your belongings and vacate my body. Those of you who do not leave immediately will be irradicated with various forms of antibiotics and herbs and any other method I deem viable. I will not stop until everybody is gone! Leave now. You are now living in a battlefield and no longer able to stay in my body unscathed.
Sincerely,
Jenna Rypka-Hauer
You are an amazing creature. Very wily and tenacious, changing to at moment’s notice to evade attack. I admire your craftiness and will to flourish. When I learn how you are able to avoid death, I am in awe. In another war, I want you on my side.
I have given you a place to grow and flourish, meeting your needs and every whim. You have returned the favor by disabling me, affecting nearly every system in my body. I can no longer breathe without pain and effort. My heart beats rapidly. My brain does not function the way it used to. In addition to not being able to find words, I have a hard time concentrating and remembering things, even from sentence to sentence! I have trouble understanding new concepts. My nervous system has malfunctioned, creating many sensitivities, including light, sound, heat, smells, and touch. My eyes and ears are affected. And then there is the pain. Every joint in my body aches and crackles and pops. My muscles ache everywhere. My bones ache at times. Even my nerves send pain signals that don’t correspond to real damage or stimulus. I have suffered from depression and anxiety almost unrelentingly. I am dizzy and nauseous almost all the time and I tremble and tremor like someone with parkinson’s disease. You have taken my ability to work, be a competent housekeeper, mother and wife, and my ability to do many of the things I enjoy. None of this is acceptable. I NEED my life back. I DEMAND you leave before you do any more damage. This is MY life, and MY body. You are no longer welcome here.
Please return the favor by vacating my body as soon as possible. As of today, you are evicted from my body! You and your friends have LONG overstayed your welcome. You are to immediately pack your belongings and vacate my body. Those of you who do not leave immediately will be irradicated with various forms of antibiotics and herbs and any other method I deem viable. I will not stop until everybody is gone! Leave now. You are now living in a battlefield and no longer able to stay in my body unscathed.
Sincerely,
Jenna Rypka-Hauer
Waiting
I'm sick of waiting to start things! I saw my LLMD on June 1st, a full week ago. Without any supporting test results, she deemed that I have chronic lyme disease. However, she does want some back up on paper (and it would ease my mind a little too). So she ordered a urine test in addition to a panel for the common lyme co-infections. She also believes I have Babesia and possibly Bartonella.
Why am I waiting? Because I needed to order a special kit to collect the samples. And then they need to be sent to the lab with the correct timing so that they don't arrive on a weekend. And the whole test is coordinated with a run of antibiotics.
It has been found that Borrelia burgdorferi (the spirochete that causes lyme) often hangs out in the bladder. Therefore, bits of dead Borrelia and its DNA can often be found in the urine. Supposedly, when the host (that'd be me) takes a big bunch of antibiotics, more bacteria swarm to the bladder (could it be that the antibiotics aren't as strong there and its the safest place for them?), and higher amounts of DNA can be found.
There are specific protocols for this. I decided to follow one that doesn't involve injections (cuz there's just as many oral meds to take with that too, so it wouldn't be saving any hassle), and one that doesn't have cephalosporins, as I am allergic to cephalexin.
I will be taking 2 500mg pills of amoxicillin and 500 mg of probenecid (which raises the concentration of amoxicillin in your blood) 3 times a day for 5 days. On top of this, I will be taking 250mg of azithromycin twice a day. This I will continue until I see my doc again in a month. On days 4, 5, and 6, I will be collecting samples from my first pee of the day. Then I'll send it all in to be tested. Starting on Wednesday enables me to send in the samples on Monday.
Why not do a simple blood test, you ask? I've done several of those already. Right now my body isn't making antibodies to Borrelia. So doing another one would kind of be a waste. There are tests that test for antibodies, what our immune system produces in defense of foreign invaders. There are also antigen tests. Antigens are the foreign invaders themselves. One would think that just doing an antigen test for Lyme would be sufficient, right? Well, its not that simple.
Borrelia burgdorferi is a sneaky crafty little bugger. It changes form and likes to lie low when things get dangerous for it. It can live in your blood, spinal fluid, joint capsule fluid, and even in your tissues. So if you do a blood antigen test and it comes back negative, all it means is that they're not in your blood when you were tested.
Antibody tests aren't fool proof either. When first infected, it takes a couple of weeks for your body's immune system to produce the antibodies. Later in infection, Borrelia do things to your immune system to weaken it. I am not entirely clear on how this works yet. Its been confusing to me whenever I try to read about it. Whatever the mechanism, the immune system is disabled so that it can't produce the antibodies. Also, Borrelia coat themselves with protein that looks like the host. In other words, it puts on a disguise, so that the host immune system doesn't see them as a threat.
As of now, I am seronegative. That is, they haven't found sufficient antibodies against Borrelia to confirm a positive diagnosis. Also, Borrelia DNA hasn't been found in my blood yet. So rather than repeat the same things and expect to get a different answer, we're going to try something different. The urine test.
So I've been not so patiently waiting to start. I've been plotting and planning and worrying. With lyme treatment, patients will get sicker before they get better. And I'm already pretty sick. I'm worried that I may become bedbound if I get much more ill. And how is someone supposed to take care of a toddler when they're too sick to get out of bed?! So I've been trying to think of options. I'm also trying to balance being prepared without focusing on the worst case scenario. I'm trying to be optimistic, but its tough.
I don't know how my stomach is going to respond to all those antibiotics. I don't know how my body will react to the Borrelia dying off. Rest is super important as well. Jared, my husband, is trying to help me switch to convalescent mode instead of fighting to get ahead with the things that need to be done around the house.
Its really tough to have a cluttered house and not have the energy to pick things up and put them away. And to know that you really shouldn't push yourself to do it either. Its tough to keep up with an active 3 year old.
So I've been anxious and antsy. I don't know what my physical response will be to the antibiotics. I'm also nervous about the test results. As important as it is to get confirmation that yes, this IS lyme disease, its also rather scary. I pray for strength, patience, optimism and grace.
Why am I waiting? Because I needed to order a special kit to collect the samples. And then they need to be sent to the lab with the correct timing so that they don't arrive on a weekend. And the whole test is coordinated with a run of antibiotics.
It has been found that Borrelia burgdorferi (the spirochete that causes lyme) often hangs out in the bladder. Therefore, bits of dead Borrelia and its DNA can often be found in the urine. Supposedly, when the host (that'd be me) takes a big bunch of antibiotics, more bacteria swarm to the bladder (could it be that the antibiotics aren't as strong there and its the safest place for them?), and higher amounts of DNA can be found.
There are specific protocols for this. I decided to follow one that doesn't involve injections (cuz there's just as many oral meds to take with that too, so it wouldn't be saving any hassle), and one that doesn't have cephalosporins, as I am allergic to cephalexin.
I will be taking 2 500mg pills of amoxicillin and 500 mg of probenecid (which raises the concentration of amoxicillin in your blood) 3 times a day for 5 days. On top of this, I will be taking 250mg of azithromycin twice a day. This I will continue until I see my doc again in a month. On days 4, 5, and 6, I will be collecting samples from my first pee of the day. Then I'll send it all in to be tested. Starting on Wednesday enables me to send in the samples on Monday.
Why not do a simple blood test, you ask? I've done several of those already. Right now my body isn't making antibodies to Borrelia. So doing another one would kind of be a waste. There are tests that test for antibodies, what our immune system produces in defense of foreign invaders. There are also antigen tests. Antigens are the foreign invaders themselves. One would think that just doing an antigen test for Lyme would be sufficient, right? Well, its not that simple.
Borrelia burgdorferi is a sneaky crafty little bugger. It changes form and likes to lie low when things get dangerous for it. It can live in your blood, spinal fluid, joint capsule fluid, and even in your tissues. So if you do a blood antigen test and it comes back negative, all it means is that they're not in your blood when you were tested.
Antibody tests aren't fool proof either. When first infected, it takes a couple of weeks for your body's immune system to produce the antibodies. Later in infection, Borrelia do things to your immune system to weaken it. I am not entirely clear on how this works yet. Its been confusing to me whenever I try to read about it. Whatever the mechanism, the immune system is disabled so that it can't produce the antibodies. Also, Borrelia coat themselves with protein that looks like the host. In other words, it puts on a disguise, so that the host immune system doesn't see them as a threat.
As of now, I am seronegative. That is, they haven't found sufficient antibodies against Borrelia to confirm a positive diagnosis. Also, Borrelia DNA hasn't been found in my blood yet. So rather than repeat the same things and expect to get a different answer, we're going to try something different. The urine test.
So I've been not so patiently waiting to start. I've been plotting and planning and worrying. With lyme treatment, patients will get sicker before they get better. And I'm already pretty sick. I'm worried that I may become bedbound if I get much more ill. And how is someone supposed to take care of a toddler when they're too sick to get out of bed?! So I've been trying to think of options. I'm also trying to balance being prepared without focusing on the worst case scenario. I'm trying to be optimistic, but its tough.
I don't know how my stomach is going to respond to all those antibiotics. I don't know how my body will react to the Borrelia dying off. Rest is super important as well. Jared, my husband, is trying to help me switch to convalescent mode instead of fighting to get ahead with the things that need to be done around the house.
Its really tough to have a cluttered house and not have the energy to pick things up and put them away. And to know that you really shouldn't push yourself to do it either. Its tough to keep up with an active 3 year old.
So I've been anxious and antsy. I don't know what my physical response will be to the antibiotics. I'm also nervous about the test results. As important as it is to get confirmation that yes, this IS lyme disease, its also rather scary. I pray for strength, patience, optimism and grace.
The Backstory
I think everything began one summer afternoon in the early '90's when I found a teeny tiny tick on my shoulder. I was sure it was a deer tick. One that was a carrier of the mysterious and scary lyme disease. I went to my mom and she helped me remove it and we taped it to an index card to bring in to the doctor for identification. We were all worried and I kind of remember a nervous bustle when my mom called the doctor. Somewhere in the mix, my little brother squished the tick. It was deemed hardly useable for ID purposes. I remember looking at the little thing, the outline of its exoskeleton brown, yet kind of transparent within the reddish blob of my blood on the card. I was about 13 or 14.
I just remember the hectic feeling when we discovered the tick, and standing on the back porch looking at the deflated body of the bug, kind of wondering, "Now what?" I don't remember a doctor's visit. I don't even remember if I took antibiotics. I DO remember that I never did get that characteristic bullseye rash. And that we never really thought much about it again.
A few years later I had a bicycle accident and smashed my knees up. Since then I have had almost daily pain in them. They crunch when I go up and down stairs, or even just bend them in the air. Then again, so does almost every other single joint in my body. Sometimes the pain feels like glass between the bones. Other times its a dull ache. They take turns giving me problems. On xrays, they look smooth and even, no sign of damage.
Round about the same time, perhaps earlier than the bike accident, I started having trouble with depression. Big problems. Back then we figured it was just misdirected teen angst, poor coping skills, genetics, etc. Its been a nearly constant struggle. Now, we realize it could be a symptom of lyme disease.
When was 16 or 17, I started having back and neck trouble. I saw a chiropractor and I remember him asking me if I danced. "Ummmm... I like to headbang...." I answered. Back then we figured it was damage that I inflicted upon myself trying to vent said teen angst. By the time I was 19, xrays showed that I was already starting to lose the curvature of my neck. Was it all from the way I liked to express myself? Perhaps its part of a bigger picture.
I had a lot of sore throats as a teen. Not much actual strep, just tonsilitis. I remember my family doc being concerned and saying that if I had another infection, we really should consider having my tonsils removed. When another one appeared, I begged my mom to take me to a different doc, cuz I didn't want to have surgery. Its possible that this was a quiet symptom of lyme and its co-infections.
Skipping to 1998, TMJ disorder jumped on me. It was terrible! I tried many many different things to manage it and fix it. Exercises, massage therapy, chiropractic, wearing a couple of different mouth guards, seeing specialists, etc etc. The only things I didn't try were braces, injections and surgery. I managed to bring things down to a dull roar, yet I'm still plagued daily by pain and stiffness, limited range of motion, migraines, having to modify activities to minimize how it affects my jaw. I also started feeling more and more fatigued. I started wondering about fibromyalgia and chronic fatigue syndrome, but didn't think my symptoms were severe enough, so I didn't see anyone about it.
In 1999, the anxiety started. I limped along, with all of these symptoms, wondering what was wrong with me, yet everything seemed to have a cause, so it wasn't that pressing. I mean hey, I'm managing ok, I'm not dying! Fibromyalgia and chronic fatigue came up in my mind a few years later, cuz damn, I have chronic pain in all 4 quadrants of my body, but I had only 9 of the tender points of the 11 needed for diagnosis. So again, I didn't bother going in.
In 2005 I was in a car accident which messed up my upper back, shoulders and neck even more, which in turn jangled up my jaw too. A low back injury was added as well. I was treated with exercises, chiro, massage and meds, and it never really got better.
2007 was a great year for me. My husband and I bought a house and I got pregnant! But that's when the slippery slope started. I slept the first trimester away. My pelvis got inflamed and I could hardly walk at 5 months along. My brain started misfiring. I'd forget everything, not make sense, do silly things like try to put the milk in the cupboard. I figured it was pregnant brain. But it didn't go away when the baby was born and I started getting more rest as she grew. It ended up getting worse. Following conversations is difficult. Understanding concepts is often a moot point. Trying to express myself fails because the words just aren't there. But I just kind of bumbled along, being a new mom and enjoying staying home with the baby.
I started to realize that perhaps my weight really IS affecting my energy levels and pain levels. So in 2009 I seriously tried to lose weight. I did pretty good and lost 15, and hit a plateau. To break it, I decided to add in exercise. A light 20 minute yoga routine. I was no newbie to yoga and was super excited to get into it again. No go. Almost immediately afterwards, my entire body ached and cried in places I never knew could hurt. I tried it again the next day, cuz maybe it was just overdoing it. Same result, but worse. Ibuprofen didn't touch any of the pain. It radiated through my bones and in my joints - every joint in my hands and feet. And my muscles ached and felt tenderized. The doctor got me in right away, and gave me the diagnosis of fibromyalgia right off the bat. He referred me to a pain clinic to manage the pain. I got a round of trigger point injections, which helped a bunch, but not enough. I went through their PT program, and it ended up causing more pain in the end as well. And then there were the meds. I don't feel like going there right now.
Midsummer 2010, one of us stumbled upon a lyme disease something or other, and it all sounded eerily familiar. We started doing some research and came up with the difficulties of diagnosis and testing. Dr. Burrascano's Guide to Lyme Disease (which can be found at www.ilads.org under the treatment guidelines in the "About Lyme" tab) suddenly opened our eyes. ALLLLLL kinds of things could be attributed to lyme borreliosis. Going down the symptom list was really scary and eye opening. Part of me was saying, 'But that was because of that..... maybe it shouldn't be included...." Well, we also did a lot of other ruling out. Every bit of blood I give comes back normal. There's nothing wrong with me! We found a rheumatologist who specialized in lyme disease and saw him in October 2010. He did not think that lyme was the culprit. Of course we forgot to ask him *why*. We were relieved yet frustrated. He said, continue what you're doing with your fibro.
We decided that we would get a second opinion from a doctor who works with ILADS. The
(ILADS) is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases. Doctors who ascribe to their train of thought are known in general as a Lyme Literate MD (LLMD). But the rheumy appt took up a lot of energy, so I didn't have the energy to start looking for someone right away.
While I was calming down, things started getting worse. Balance issues, hypersensitivity issues, thick brain fog, inability to concentrate, exhaustion all added on to my already long list of symptoms. I'd get muscle twitches and trembles, and tehre would be times when I felt as if I was shaking or tremoring like a parkinson's paitent. And then there was the air hunger. Its gotten bad a bunch of times, and in the past few weeks I've been diagnosed with asthma. I have a steroid management inhaler that I can't use because lyme loves steroids. So I'm living off my albuterol. Heat and humidity make it worse, as does activity.
On June 1st, I went to see Dr. O, an LLMD who was on several lists you can find on lymenet.org. Its a forum site, but rather than posting docs names, you request a list in your area and someone sends it to you. It seems kind of odd, but these docs fly by the seat of their pants and go against many federal regulations to treat us. In some states, this is more serious than others. I recently heard that MN finally doesn't have repercussions for LLMDs who prescribe long term high dose antibiotics. I'll probably try to link to a few posts about this later. Can't remember where they are right now. But anyway, LLMDs have to fly under the radar for the most part. Ours doesn't do insurance because a lot of what insurance will cover has to do with what the CDC says should be covered. Its a big nasty mess that is really frustrating. Like for instance, if I need a PICC line for my antibiotics, insurance might not cover it because its not considered a necessary procedure because its going above and beyond the treatment guidelines provided by the CDC. Grrrrrr....
Anyway, my appt with Dr O was pretty good. She was super attentive and thorough. Very kind. Part way through my history, she paused, I think when she saw the steroidal inhaler, to say that I really shouldn't be taking steroids with an uncontrolled chronic lyme infection. It was like she already knew I had it before we were all done. The light bulb was on, she HEARD us, and really agreed that my whole entire health history could very well be pivoted upon that little squished tick. Hmmm Maybe it squished from the weight of what it eventually caused.
So that's the story in a few nutshells. My chronic lyme disease hasn't been verified on paper yet, though I have a great clinical case for diagnosis. This week I'm starting an abx challenge for a urine test to see if we can find them there, since my body isn't making antibodies to them in enough concentration for a positive result. And that will be the beginning of the end of the reign of Borrelia burgdorferi!!! I may have a few coinfections as well.
I'm nervous, I'm excited. I'm determined. I'm hopeful. I'm scared.
I just remember the hectic feeling when we discovered the tick, and standing on the back porch looking at the deflated body of the bug, kind of wondering, "Now what?" I don't remember a doctor's visit. I don't even remember if I took antibiotics. I DO remember that I never did get that characteristic bullseye rash. And that we never really thought much about it again.
A few years later I had a bicycle accident and smashed my knees up. Since then I have had almost daily pain in them. They crunch when I go up and down stairs, or even just bend them in the air. Then again, so does almost every other single joint in my body. Sometimes the pain feels like glass between the bones. Other times its a dull ache. They take turns giving me problems. On xrays, they look smooth and even, no sign of damage.
Round about the same time, perhaps earlier than the bike accident, I started having trouble with depression. Big problems. Back then we figured it was just misdirected teen angst, poor coping skills, genetics, etc. Its been a nearly constant struggle. Now, we realize it could be a symptom of lyme disease.
When was 16 or 17, I started having back and neck trouble. I saw a chiropractor and I remember him asking me if I danced. "Ummmm... I like to headbang...." I answered. Back then we figured it was damage that I inflicted upon myself trying to vent said teen angst. By the time I was 19, xrays showed that I was already starting to lose the curvature of my neck. Was it all from the way I liked to express myself? Perhaps its part of a bigger picture.
I had a lot of sore throats as a teen. Not much actual strep, just tonsilitis. I remember my family doc being concerned and saying that if I had another infection, we really should consider having my tonsils removed. When another one appeared, I begged my mom to take me to a different doc, cuz I didn't want to have surgery. Its possible that this was a quiet symptom of lyme and its co-infections.
Skipping to 1998, TMJ disorder jumped on me. It was terrible! I tried many many different things to manage it and fix it. Exercises, massage therapy, chiropractic, wearing a couple of different mouth guards, seeing specialists, etc etc. The only things I didn't try were braces, injections and surgery. I managed to bring things down to a dull roar, yet I'm still plagued daily by pain and stiffness, limited range of motion, migraines, having to modify activities to minimize how it affects my jaw. I also started feeling more and more fatigued. I started wondering about fibromyalgia and chronic fatigue syndrome, but didn't think my symptoms were severe enough, so I didn't see anyone about it.
In 1999, the anxiety started. I limped along, with all of these symptoms, wondering what was wrong with me, yet everything seemed to have a cause, so it wasn't that pressing. I mean hey, I'm managing ok, I'm not dying! Fibromyalgia and chronic fatigue came up in my mind a few years later, cuz damn, I have chronic pain in all 4 quadrants of my body, but I had only 9 of the tender points of the 11 needed for diagnosis. So again, I didn't bother going in.
In 2005 I was in a car accident which messed up my upper back, shoulders and neck even more, which in turn jangled up my jaw too. A low back injury was added as well. I was treated with exercises, chiro, massage and meds, and it never really got better.
2007 was a great year for me. My husband and I bought a house and I got pregnant! But that's when the slippery slope started. I slept the first trimester away. My pelvis got inflamed and I could hardly walk at 5 months along. My brain started misfiring. I'd forget everything, not make sense, do silly things like try to put the milk in the cupboard. I figured it was pregnant brain. But it didn't go away when the baby was born and I started getting more rest as she grew. It ended up getting worse. Following conversations is difficult. Understanding concepts is often a moot point. Trying to express myself fails because the words just aren't there. But I just kind of bumbled along, being a new mom and enjoying staying home with the baby.
I started to realize that perhaps my weight really IS affecting my energy levels and pain levels. So in 2009 I seriously tried to lose weight. I did pretty good and lost 15, and hit a plateau. To break it, I decided to add in exercise. A light 20 minute yoga routine. I was no newbie to yoga and was super excited to get into it again. No go. Almost immediately afterwards, my entire body ached and cried in places I never knew could hurt. I tried it again the next day, cuz maybe it was just overdoing it. Same result, but worse. Ibuprofen didn't touch any of the pain. It radiated through my bones and in my joints - every joint in my hands and feet. And my muscles ached and felt tenderized. The doctor got me in right away, and gave me the diagnosis of fibromyalgia right off the bat. He referred me to a pain clinic to manage the pain. I got a round of trigger point injections, which helped a bunch, but not enough. I went through their PT program, and it ended up causing more pain in the end as well. And then there were the meds. I don't feel like going there right now.
Midsummer 2010, one of us stumbled upon a lyme disease something or other, and it all sounded eerily familiar. We started doing some research and came up with the difficulties of diagnosis and testing. Dr. Burrascano's Guide to Lyme Disease (which can be found at www.ilads.org under the treatment guidelines in the "About Lyme" tab) suddenly opened our eyes. ALLLLLL kinds of things could be attributed to lyme borreliosis. Going down the symptom list was really scary and eye opening. Part of me was saying, 'But that was because of that..... maybe it shouldn't be included...." Well, we also did a lot of other ruling out. Every bit of blood I give comes back normal. There's nothing wrong with me! We found a rheumatologist who specialized in lyme disease and saw him in October 2010. He did not think that lyme was the culprit. Of course we forgot to ask him *why*. We were relieved yet frustrated. He said, continue what you're doing with your fibro.
We decided that we would get a second opinion from a doctor who works with ILADS. The
| International Lyme And Associated Diseases Society |
While I was calming down, things started getting worse. Balance issues, hypersensitivity issues, thick brain fog, inability to concentrate, exhaustion all added on to my already long list of symptoms. I'd get muscle twitches and trembles, and tehre would be times when I felt as if I was shaking or tremoring like a parkinson's paitent. And then there was the air hunger. Its gotten bad a bunch of times, and in the past few weeks I've been diagnosed with asthma. I have a steroid management inhaler that I can't use because lyme loves steroids. So I'm living off my albuterol. Heat and humidity make it worse, as does activity.
On June 1st, I went to see Dr. O, an LLMD who was on several lists you can find on lymenet.org. Its a forum site, but rather than posting docs names, you request a list in your area and someone sends it to you. It seems kind of odd, but these docs fly by the seat of their pants and go against many federal regulations to treat us. In some states, this is more serious than others. I recently heard that MN finally doesn't have repercussions for LLMDs who prescribe long term high dose antibiotics. I'll probably try to link to a few posts about this later. Can't remember where they are right now. But anyway, LLMDs have to fly under the radar for the most part. Ours doesn't do insurance because a lot of what insurance will cover has to do with what the CDC says should be covered. Its a big nasty mess that is really frustrating. Like for instance, if I need a PICC line for my antibiotics, insurance might not cover it because its not considered a necessary procedure because its going above and beyond the treatment guidelines provided by the CDC. Grrrrrr....
Anyway, my appt with Dr O was pretty good. She was super attentive and thorough. Very kind. Part way through my history, she paused, I think when she saw the steroidal inhaler, to say that I really shouldn't be taking steroids with an uncontrolled chronic lyme infection. It was like she already knew I had it before we were all done. The light bulb was on, she HEARD us, and really agreed that my whole entire health history could very well be pivoted upon that little squished tick. Hmmm Maybe it squished from the weight of what it eventually caused.
So that's the story in a few nutshells. My chronic lyme disease hasn't been verified on paper yet, though I have a great clinical case for diagnosis. This week I'm starting an abx challenge for a urine test to see if we can find them there, since my body isn't making antibodies to them in enough concentration for a positive result. And that will be the beginning of the end of the reign of Borrelia burgdorferi!!! I may have a few coinfections as well.
I'm nervous, I'm excited. I'm determined. I'm hopeful. I'm scared.
Monday, June 6, 2011
My Purpose Here
I have decided to blog my journey with chronic lyme disease. Perhaps someone can learn from it, perhaps someone will feel less alone. Maybe I'll meet new people and gain fellowship with similar sufferers. Something good will come from my battle, even if I don't get any better. If nothing else, it will be a place for me to log symptoms, meds and reactions.
I have never really blogged before, at least not the kind you advertise about on facebook or other places, so this is going to be a learning experience. I tend to be kind of wordy, and give out too much information. I'm going to try to limit this blog to how living with chronic lyme disease affects me and my family. It IS personal, and I may often talk about gross things. So consider this your warning! *LOL*
Lyme disease is a very political one. Its a very scary one. Borrelia burgdorferi are really crafty, sneaky little buggers! I'll likely have emotional posts, and ones you may or may not agree with. That's ok if you don't agree with me, as long as you think about what I write. I'm going to try to make as much sense as I can, as well as being as well informed as I can. However, given one of my symptoms of brain fog, its a challenge. Some days, I just can't explain things, no matter how hard I try. Please bear with me.
And with that, I bring to you the story of my battle with Borrelia burgdorferi...
I have never really blogged before, at least not the kind you advertise about on facebook or other places, so this is going to be a learning experience. I tend to be kind of wordy, and give out too much information. I'm going to try to limit this blog to how living with chronic lyme disease affects me and my family. It IS personal, and I may often talk about gross things. So consider this your warning! *LOL*
Lyme disease is a very political one. Its a very scary one. Borrelia burgdorferi are really crafty, sneaky little buggers! I'll likely have emotional posts, and ones you may or may not agree with. That's ok if you don't agree with me, as long as you think about what I write. I'm going to try to make as much sense as I can, as well as being as well informed as I can. However, given one of my symptoms of brain fog, its a challenge. Some days, I just can't explain things, no matter how hard I try. Please bear with me.
And with that, I bring to you the story of my battle with Borrelia burgdorferi...
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