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.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Monday, July 18, 2011
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.
Tuesday, June 7, 2011
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.
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