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.
Sunday, June 12, 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.
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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