https://au.news.yahoo.com/sunday-night/features/a/25588947/australians-flock-to-overseas-lyme-disease-treatment/
Monday, November 24, 2014
Insomnia
It's 10:30pm. You're lying in bed with the television and lights off, your cell phone off, with the battery possibly removed, and in good spirits and adamant that tonight you will get a good night's sleep. But before you know it, it's 1am in the morning and the only thing productive you've done since hitting the sack is think about how you can't fall asleep no matter how hard you try. That was me tonight.... I have been up and about, and wide awake ever since, even though I am exhausted all day and desperately need sleep for my body to heal....
Insomnia. It's the only symptom of Lyme Disease that doesn't occur while a person is sleeping. You might need a second to take that one in. Insomnia includes not just an inability to naturally fall asleep, but sometimes also the inability to stay asleep for the entire night. Not everyone with chronic Lyme Disease experiences insomnia, and some experience it at different intervals throughout treatment. The cause for each individual's insomnia can be different, and even a combination of factors. It's a very familiar pattern - sleep (or in my case exhaustion but inability to nap) all day and stay awake all night. More information on the causes of Lyme-induced insomnia can be found in Dr. Richard Horowitz's book "Why Can't I Get Better: Solving the Mystery of Lyme & Chronic Disease".
Personally, I have found a way to fall asleep most nights lately - 10mg Melatonin, magnesium, lyrica (for muscle pain), double dose herbal sleep aide, hot packs on my cramped muscles and about a paragraph of a book. What I have not discovered is a way to stay asleep or gain restful sleep. I consistently wake around 1pm and then again by 3:30/4am, at which time I am done sleeping for the night and may as well get out of bed. If I miss the opportunity to fall asleep at night because of ie. stress, over-tiredness, lack of winding down, muscle pain, headache/brain heaviness or digestion troubles I will remain awake for the entire night. At a certain point I admit defeat and try to achieve something with my night so that I don't feel so bad when I am wandering around in a daze and not able to accomplish anything the following day.
Insomnia doesn't mean you don't need sleep
It's foolish to think that just because you're not tired, your body doesn't need or desire that all important rest, or that the body itself somehow chose to stay awake rather than sleep. The body is under the influence of a bacteria, and possibly other pathogens, that greatly influence its own chemistry. So it's not the body that doesn't want to sleep, but rather the body under the influence of pathogens giving the illusion that sleep is not desired or needed.
Sleep is essential for healing from chronic Lyme Disease
In the end, it's going to be the immune system that puts the final nail in the coffin for those who heal from chronic Lyme Disease. A good antibiotic will kill the pathogens it was designed to kill, but it will be up to the immune system to not only do the same, but also removes the toxins left over that cause chronic inflammation (i.e., symptoms), and to ultimately keep the bacteria at bay and suppressed. Once the Lyme bacteria is suppressed and the immune system has complete control, then grounds are created for a person to be asymptomatic or achieve remission. Sleep deprivation directly results in an even more compromised immune system, and when the immune system is down, the pathogens are up.
Sleep medications have been unsuccessful for me as I have battled with insomnia and lack of restorative sleep over the past few years. I have tried several prescribed versions and they have had an opposite effect in my body, causing my brain to work even harder to overcome the buzzed feeling that they give me. An interesting study at the sleep clinic, conducted two years ago when I was struggling with severe insomnia, showed my brain activity was creating arousals about every 5 minutes. Either the pain or what we now know is lyme disease has been keeping my body and brain on high alert!
Because of the importance of sleep to my recovery, Dr McShane (LLMD) has suggested I go to bed as soon as I become exhausted in the evenings - aim for 9:30 lights out. I may be able to squeeze in a couple more hours of sleep by going to bed earlier every night. I am up for trying anything at this point so if you are unable to get hold of me after 9pm, I have probably turned off my phone and am winding down and going about my sleep inducing routine!
...parts of the information in this blog post were taken from a posting on the hamilton region lyme alliance (thanks Jeanne...)
Insomnia. It's the only symptom of Lyme Disease that doesn't occur while a person is sleeping. You might need a second to take that one in. Insomnia includes not just an inability to naturally fall asleep, but sometimes also the inability to stay asleep for the entire night. Not everyone with chronic Lyme Disease experiences insomnia, and some experience it at different intervals throughout treatment. The cause for each individual's insomnia can be different, and even a combination of factors. It's a very familiar pattern - sleep (or in my case exhaustion but inability to nap) all day and stay awake all night. More information on the causes of Lyme-induced insomnia can be found in Dr. Richard Horowitz's book "Why Can't I Get Better: Solving the Mystery of Lyme & Chronic Disease".
Personally, I have found a way to fall asleep most nights lately - 10mg Melatonin, magnesium, lyrica (for muscle pain), double dose herbal sleep aide, hot packs on my cramped muscles and about a paragraph of a book. What I have not discovered is a way to stay asleep or gain restful sleep. I consistently wake around 1pm and then again by 3:30/4am, at which time I am done sleeping for the night and may as well get out of bed. If I miss the opportunity to fall asleep at night because of ie. stress, over-tiredness, lack of winding down, muscle pain, headache/brain heaviness or digestion troubles I will remain awake for the entire night. At a certain point I admit defeat and try to achieve something with my night so that I don't feel so bad when I am wandering around in a daze and not able to accomplish anything the following day.
Insomnia doesn't mean you don't need sleep
It's foolish to think that just because you're not tired, your body doesn't need or desire that all important rest, or that the body itself somehow chose to stay awake rather than sleep. The body is under the influence of a bacteria, and possibly other pathogens, that greatly influence its own chemistry. So it's not the body that doesn't want to sleep, but rather the body under the influence of pathogens giving the illusion that sleep is not desired or needed.
Sleep is essential for healing from chronic Lyme Disease
In the end, it's going to be the immune system that puts the final nail in the coffin for those who heal from chronic Lyme Disease. A good antibiotic will kill the pathogens it was designed to kill, but it will be up to the immune system to not only do the same, but also removes the toxins left over that cause chronic inflammation (i.e., symptoms), and to ultimately keep the bacteria at bay and suppressed. Once the Lyme bacteria is suppressed and the immune system has complete control, then grounds are created for a person to be asymptomatic or achieve remission. Sleep deprivation directly results in an even more compromised immune system, and when the immune system is down, the pathogens are up.
Sleep medications have been unsuccessful for me as I have battled with insomnia and lack of restorative sleep over the past few years. I have tried several prescribed versions and they have had an opposite effect in my body, causing my brain to work even harder to overcome the buzzed feeling that they give me. An interesting study at the sleep clinic, conducted two years ago when I was struggling with severe insomnia, showed my brain activity was creating arousals about every 5 minutes. Either the pain or what we now know is lyme disease has been keeping my body and brain on high alert!
Because of the importance of sleep to my recovery, Dr McShane (LLMD) has suggested I go to bed as soon as I become exhausted in the evenings - aim for 9:30 lights out. I may be able to squeeze in a couple more hours of sleep by going to bed earlier every night. I am up for trying anything at this point so if you are unable to get hold of me after 9pm, I have probably turned off my phone and am winding down and going about my sleep inducing routine!
...parts of the information in this blog post were taken from a posting on the hamilton region lyme alliance (thanks Jeanne...)
Tuesday, November 11, 2014
Bartonella and Bad Behaviour
This is a difficult post for me to write.
I am struggling to find a balance between being godly through this trial and not feeling guilty over things beyond my control.
I am struggling with bad behaviour. My brain feels like it is heavy and I am very easily overwhelmed when things get loud, disorderly or stressful around me. I am short tempered and have found myself yelling at my children or my husband and then sobbing immediately afterwards with remorse for how I am treating them. I have asked God to help me with this, to give me peace and calm in my brain. So far, He has chosen not to do so and I am noticing the symptoms in my brain getting worse. Apparently (some of?) these symptoms are caused by the co-infection Bartonella, which infects the brain. We are not currently treating Bartonella directly, but as the other infections are getting attacked, Bartonella has the opportunity to become more active. I am not able to hold long conversations without getting exhausted and feel a very strong urge to take a nap after attempting to read a story to my children. So I get frustrated, and irritated at them during an activity such as reading that I formerly enjoyed participating in. I love reading. I always have. I now read a paragraph at night to induce sleep.....Need another example? I became frustrated the other day while doing a craft with the kids because they were requiring too much of me and asking for my help when I had no strength or energy left to give. I have always loved doing crafts with the kids, and the joy that it brings them makes all effort worth it.... or so it used to be.....
So - where does my responsibility to act in a Christian manner begin and end? What can I blame on the Bartonella and the affects of treatment and what is simply sin that needs to be uprooted? We are told in the James 4:1 "What causes fights and quarrels among you? Don't they come from your desires that battle within you? You want something, but you don't get it (or you get something that you don't want)"
I recognize my desires - to have peace and quiet, to be done with this disease, to rest and recover, to be free of the responsibility of taking care of myself 24/7, to return to 'normal' life and eat and drink things that I enjoy, to socialize again, to sleep properly, to have physical strength and energy....etc.... This means, in the instances when I behave badly, I am not getting what I want, and my response to not getting my way is producing a crop of thorns in my life. I am thankful there is unlimited forgiveness for a sinner like me...
"If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness." 1 John 1:9
"Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing, so that also at the revelation of His glory you may rejoice with exultation.…" 1 Peter 4:12
My beautiful fairy princess turned five this week. Happy birthday Alanah!!
I am struggling to find a balance between being godly through this trial and not feeling guilty over things beyond my control.
I am struggling with bad behaviour. My brain feels like it is heavy and I am very easily overwhelmed when things get loud, disorderly or stressful around me. I am short tempered and have found myself yelling at my children or my husband and then sobbing immediately afterwards with remorse for how I am treating them. I have asked God to help me with this, to give me peace and calm in my brain. So far, He has chosen not to do so and I am noticing the symptoms in my brain getting worse. Apparently (some of?) these symptoms are caused by the co-infection Bartonella, which infects the brain. We are not currently treating Bartonella directly, but as the other infections are getting attacked, Bartonella has the opportunity to become more active. I am not able to hold long conversations without getting exhausted and feel a very strong urge to take a nap after attempting to read a story to my children. So I get frustrated, and irritated at them during an activity such as reading that I formerly enjoyed participating in. I love reading. I always have. I now read a paragraph at night to induce sleep.....Need another example? I became frustrated the other day while doing a craft with the kids because they were requiring too much of me and asking for my help when I had no strength or energy left to give. I have always loved doing crafts with the kids, and the joy that it brings them makes all effort worth it.... or so it used to be.....
So - where does my responsibility to act in a Christian manner begin and end? What can I blame on the Bartonella and the affects of treatment and what is simply sin that needs to be uprooted? We are told in the James 4:1 "What causes fights and quarrels among you? Don't they come from your desires that battle within you? You want something, but you don't get it (or you get something that you don't want)"
I recognize my desires - to have peace and quiet, to be done with this disease, to rest and recover, to be free of the responsibility of taking care of myself 24/7, to return to 'normal' life and eat and drink things that I enjoy, to socialize again, to sleep properly, to have physical strength and energy....etc.... This means, in the instances when I behave badly, I am not getting what I want, and my response to not getting my way is producing a crop of thorns in my life. I am thankful there is unlimited forgiveness for a sinner like me...
"If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness." 1 John 1:9
Please pray specifically for my family and I, that we will receive grace to accept all aspects of this disease from God's hand, and that I may respond with love and patience when things become overwhelming for me. It tears me up that my children and husband are suffering because I cannot seem to control my bad behaviour. If I ever had trouble pinpointing sin in my life, I certainly do not now. Lord, please forgive me, and let me begin each hour anew (I have shifted from needing daily strength to hourly or per minute strength...) Another lesson, God is at work here.....
Thank-you for all the encouraging cards you have sent!
"Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing, so that also at the revelation of His glory you may rejoice with exultation.…" 1 Peter 4:12
My beautiful fairy princess turned five this week. Happy birthday Alanah!!
Basic Diet = LOW (lots of work...)
With thankfulness I am noting some slow improvement in my physical abilities lately. I was 'crashing' and spending a day on the couch about every third day a week ago and this past week I have only had to spend one day recovering (today is my second).
For some reason I am always hungry and continue to lose weight. I have been trying to focus on strengthening my core through physiotherapy and exercising on my recumbent bike 3 times a day when at all possible....
Sleep continues to be huge issue for me. I mostly manage to fall asleep but am awake consistently at 3:30/4am and do not fall back asleep after that time. Often I wake up once before this time as well. This only gives me about 4 hours of sleep in a row, which is not enough to be restorative. Sleep is very important to healing so I will be trying some different sleep aides (again...) to see if I can find one that allows me to get into a deeper sleep. What a blessing sleep is - another thing we take for granted when it is not an issue in our lives!
I am still struggling to control the swelling and bloating which is caused by digestion problems and an overgrowth of yeast in my intestines again. I am back on medication to control Candida, and I have completely cut out fruit and sweeter vegetables until I stabilize again....I don't think my digestive enzymes are working so I will be looking into switching types and see if that helps control the inflammation a little better.
Almond milk must be made from scratch as I react to the guar gum and sugars found in commercially prepared milk. 1 cup of soaked almonds will produce 2-3cups of almond milk and 1 cup of almond flour which can be used to make my 'bread' so it is well worth the effort!
For some reason I am always hungry and continue to lose weight. I have been trying to focus on strengthening my core through physiotherapy and exercising on my recumbent bike 3 times a day when at all possible....Sleep continues to be huge issue for me. I mostly manage to fall asleep but am awake consistently at 3:30/4am and do not fall back asleep after that time. Often I wake up once before this time as well. This only gives me about 4 hours of sleep in a row, which is not enough to be restorative. Sleep is very important to healing so I will be trying some different sleep aides (again...) to see if I can find one that allows me to get into a deeper sleep. What a blessing sleep is - another thing we take for granted when it is not an issue in our lives!
I am still struggling to control the swelling and bloating which is caused by digestion problems and an overgrowth of yeast in my intestines again. I am back on medication to control Candida, and I have completely cut out fruit and sweeter vegetables until I stabilize again....I don't think my digestive enzymes are working so I will be looking into switching types and see if that helps control the inflammation a little better.
The basic diet is going well - I am constantly hungry which causes a lot of extra physical work as each meal has to be cooked from fresh produce. I am slowly figuring out a routine and with the help of friends I am beginning to prepare and freeze as much food as possible in advance so that my days are not overwhelmed with preparing and consuming food.
Multi-tasking. Preparing my almond milk and cutting up vegetables while administering IV antibiotics
Subscribe to:
Posts (Atom)