Chronic Lyme is not only most likely under diagnosed but it also is very difficult to treat. That statement has all sorts of controversy in it, so let me just say that this post is directed to those who believe in Chronic Lyme and or who have been diagnosed with it. I have been through several treatments and I want to share with you my latest and why I think it might be of help to you.
First as you may know from previous posts that I went through a series of antibiotic treatments that seemed to help for a while, but in the end just left me with a bad digestive system. Then in the Spring of 2014 I had regressed so badly that I decided to begin an alternative treatment plan. This is something that was very foreign to me and not something I would have typically done as I have always grown up with "western medicine."
I am still doing my ONDAMED and seeing my Chinese Herbalist.
Monday, October 20, 2014
Sunday, October 12, 2014
Sweet Relief
It has been almost 2 months since I went to Longevity Health Center in Atlanta and I am happy to say that I am experiencing relief in my symptoms.
During the first month of treatment my symptoms got worse and I felt horrible. I had tics that were manifested in a grunting sound. They would go on and on. They were uncontrollable and very uncomfortable often causing pain in my chest. I had an ONDAMED treatment to help reduce the tics. It took about a week and then they started subsiding. Praise the Lord I am rarely experiencing them now.
In September I sent my blood to Longevity Health Center to be looked at for the 1 month review. Things looked better but the spirochetes were still present. They changed my treatment up and have been focusing on my kidneys and mercury this month. The past two weeks have been the most relief I have experienced in a long long time. I have had more energy. For the first time in over a year I was able to go to church and not be a shaking mess from the sounds and stimulation. I have not had a seizure in a month. This weekend I went to a ball room dancing class and watched 59 kids for 3 hours go nuts at Flipz USA; I am paying for that today, but that I was even able to make it through was amazing.
Today I am resting because I am tired out and my body is responding to the tiredness. BUT…I feel better than I did!!! God is working in my body. I don't know what the next set of treatments will be like, but I am not worried about tomorrow - I am enjoying today.
During the first month of treatment my symptoms got worse and I felt horrible. I had tics that were manifested in a grunting sound. They would go on and on. They were uncontrollable and very uncomfortable often causing pain in my chest. I had an ONDAMED treatment to help reduce the tics. It took about a week and then they started subsiding. Praise the Lord I am rarely experiencing them now.
In September I sent my blood to Longevity Health Center to be looked at for the 1 month review. Things looked better but the spirochetes were still present. They changed my treatment up and have been focusing on my kidneys and mercury this month. The past two weeks have been the most relief I have experienced in a long long time. I have had more energy. For the first time in over a year I was able to go to church and not be a shaking mess from the sounds and stimulation. I have not had a seizure in a month. This weekend I went to a ball room dancing class and watched 59 kids for 3 hours go nuts at Flipz USA; I am paying for that today, but that I was even able to make it through was amazing.
Today I am resting because I am tired out and my body is responding to the tiredness. BUT…I feel better than I did!!! God is working in my body. I don't know what the next set of treatments will be like, but I am not worried about tomorrow - I am enjoying today.
Friday, September 26, 2014
Living the Real Life
I am glad, I am sad, My facial spasms make me mad.
I would like to tell you that everyday I live I am extremely thankful for all of the blessings God has given me. I would like to tell you that I never focus on the negative and that each morning I jump out of bed with a renewed hope. I think this is the face I try to show people but so I often I am just posing. I am the exact person that Brennan Manning talks about in his book "Posers, Fakers and Wannabes".
I realized
I would like to tell you that everyday I live I am extremely thankful for all of the blessings God has given me. I would like to tell you that I never focus on the negative and that each morning I jump out of bed with a renewed hope. I think this is the face I try to show people but so I often I am just posing. I am the exact person that Brennan Manning talks about in his book "Posers, Fakers and Wannabes".
I realized
Monday, September 1, 2014
3 Strikes Your Out OR 3rd Times a Charm
Well, it has been about a month since I last wrote. That's a sure way to get people to forget about my blog!!!
As, you may or may not know over the course of the past year and a half I have tried to get into the Mayo not once, not twice, but three times. The first time was before I got really really sick and was admitted to Barnes Jewish. I was rejected that time I think, because I had not exhausted all of the resources around me. Then the second time was recently. I thought for sure I would get in because I had exhausted all of the resources around me. Within a week of applying to the neurology department I was sent a letter stating that there was nothing more they could do, but if my doctor wanted to talk with the "on-call" doctor about it they could. So, one of my doctors offices called and finally convinced the neurology department to take another look at my case. In no time at all I received a third letter stating they would not see me.
I believe it is easy to look at this as 3 Strikes I am out, there is nothing more for me to do but sit in the dug out and feel dejected. OR, I can choose to look at the Mayo rejecting me 3 times as "3rd Times a Charm" and here is why…
Over the course of the past couple of years I have been blessed to attend a retreat in Atlanta, GA for mom's with adoptive kids called Created 4 Care. The first year one of the leaders of the retreat mentioned how she had been so sick and couldn't walk and had to hire help etc. I wasn't personally to that state quite yet, but I was very close. When I inquired what she had, I found out she had had Lyme. Shortly after the retreat, I too was diagnosed with Lyme. This past year I attended the retreat again and the lady was doing awesome. I found out she had never even been treated with antibiotics; even though it took her a year she was all better. AMAZING! I wanted to know where she had gone and what treatment she had done.
In the meantime at the retreat, right after worship, the lady sitting next to me asked me if I had Lyme. Kind of an out of no where question! I told her yes and she proceeded to tell me she had been looking for me because someone had mentioned me to her and that I had Lyme. She was excited to have happened to sit by me (this is not a small conference people) and wanted to talk to me about herself and her friend's experience with Lyme. She had been struggling for years and but she had just gone to a doctor with her friend there in Atlanta and was thinking about going to see him. Her friend had had Lyme and was better after about a year of treatment. Guess what, she went to the same doctor that conference leader had gone to.
So I took this all in and thought it was cool and that I should see what kind of treatment this doctor did and if there was anything like it in MO, because GA is kind of far to be going to the doctor. When I got back I started some alternative treatments and seemed to be getting some better but progress was slow, which is why I finally decided to try the Mayo. I was super unsure about the Mayo and I kept praying and having friends pray about getting in because I believed that if that is where I needed to be God would get me in. However, I felt very very unsettled about it. When I didn't get in I started thinking about this place in GA and started considering going there as a real possibility. I was not content to sit in the dug out just because the Mayo wouldn't get me in. I was not content to go back on antibiotics that would continue to destroy my gut and not heal my Lyme. I was not content to be told that my problems were neuro-psychological when I had therapists telling me they did not believe this to be my issue.
So, I made an appointment and I went to GA. It was about an 11 hour trip that turned into about 13 hours. This might not sound bad but I don't travel well these days so by the time we arrived I was a shaking mess. On the up side it was great to actually be able to spend one-on-one time with my husband for that many hours with no interruptions. I think the appointment is something I am going to have to write about in another post because it is too interesting to not give you details. Right now, I am off to rest. Please check back soon, I have so many blessings to share.
As, you may or may not know over the course of the past year and a half I have tried to get into the Mayo not once, not twice, but three times. The first time was before I got really really sick and was admitted to Barnes Jewish. I was rejected that time I think, because I had not exhausted all of the resources around me. Then the second time was recently. I thought for sure I would get in because I had exhausted all of the resources around me. Within a week of applying to the neurology department I was sent a letter stating that there was nothing more they could do, but if my doctor wanted to talk with the "on-call" doctor about it they could. So, one of my doctors offices called and finally convinced the neurology department to take another look at my case. In no time at all I received a third letter stating they would not see me.
I believe it is easy to look at this as 3 Strikes I am out, there is nothing more for me to do but sit in the dug out and feel dejected. OR, I can choose to look at the Mayo rejecting me 3 times as "3rd Times a Charm" and here is why…
Over the course of the past couple of years I have been blessed to attend a retreat in Atlanta, GA for mom's with adoptive kids called Created 4 Care. The first year one of the leaders of the retreat mentioned how she had been so sick and couldn't walk and had to hire help etc. I wasn't personally to that state quite yet, but I was very close. When I inquired what she had, I found out she had had Lyme. Shortly after the retreat, I too was diagnosed with Lyme. This past year I attended the retreat again and the lady was doing awesome. I found out she had never even been treated with antibiotics; even though it took her a year she was all better. AMAZING! I wanted to know where she had gone and what treatment she had done.
In the meantime at the retreat, right after worship, the lady sitting next to me asked me if I had Lyme. Kind of an out of no where question! I told her yes and she proceeded to tell me she had been looking for me because someone had mentioned me to her and that I had Lyme. She was excited to have happened to sit by me (this is not a small conference people) and wanted to talk to me about herself and her friend's experience with Lyme. She had been struggling for years and but she had just gone to a doctor with her friend there in Atlanta and was thinking about going to see him. Her friend had had Lyme and was better after about a year of treatment. Guess what, she went to the same doctor that conference leader had gone to.
So I took this all in and thought it was cool and that I should see what kind of treatment this doctor did and if there was anything like it in MO, because GA is kind of far to be going to the doctor. When I got back I started some alternative treatments and seemed to be getting some better but progress was slow, which is why I finally decided to try the Mayo. I was super unsure about the Mayo and I kept praying and having friends pray about getting in because I believed that if that is where I needed to be God would get me in. However, I felt very very unsettled about it. When I didn't get in I started thinking about this place in GA and started considering going there as a real possibility. I was not content to sit in the dug out just because the Mayo wouldn't get me in. I was not content to go back on antibiotics that would continue to destroy my gut and not heal my Lyme. I was not content to be told that my problems were neuro-psychological when I had therapists telling me they did not believe this to be my issue.
So, I made an appointment and I went to GA. It was about an 11 hour trip that turned into about 13 hours. This might not sound bad but I don't travel well these days so by the time we arrived I was a shaking mess. On the up side it was great to actually be able to spend one-on-one time with my husband for that many hours with no interruptions. I think the appointment is something I am going to have to write about in another post because it is too interesting to not give you details. Right now, I am off to rest. Please check back soon, I have so many blessings to share.
Monday, July 21, 2014
Trust & Quietness
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." -Proverbs 3:5-6
"…In quietness and trust is your strength." -Isaiah 30:15
Anyone who knows me very well would probably describe me as someone who often has a certain amount of anxiety. I believe it frequently takes on the disguise as "drive"; always wanting to be moving or get something done. This can actually seem like a good thing at times, the desire to accomplish goals and see things through, but in reality the anxiety is a lack of rest and contentment.
When I first got really sick and had to go to Barnes Jewish Hospital, my mom got so aggravated with me, because the doctors asked me if I worried a lot and I told them no. My mom knows me pretty well and she knew this was not the full truth. Of course I worry!
The anxiety has been rapidly growing in me the past week. I am so tired of going to doctors and being sick. My attempt to get into the Mayo is because I am tired of going to doctors, being sick, and I can't afford the treatments that are required for Lyme. But here is where the anxiety and worry has started building up in me…what if I don't get into Mayo, what if I do get into Mayo and they ignore my pain or aren't open to Lyme or try to pigeon hole me into a diagnosis because they aren't sure. What if I need to go to this place in Arizona instead of Mayo, because they have been studying and treating Lyme for a decade. What if, what if, what if??????? Let me just tell you I have not been at peace.
So, I was praying last night as I woke up throughout the night the scriptures about anxiety and God's consolation. This morning as I am spending time with God, the two scriptures from my devotional are about trust and quietness. When we trust in God, our creator - the one who knows all things and is in control of all things, the path we should walk becomes straighter and not so curvy. Its the curves in the road that throw me off: like learning to ride a bike and once the corner comes up not knowing how to steer and thus falling to the ground. But trusting in God, letting him steer, my path becomes straighter and less scary. In addition when I allow my mind to be quiet and not filled with the "what ifs" my trust in God can grow and I can be strengthened.
Believe me, even as I write, I am having trouble allowing my mind and heart to be quiet and trust in God. There is a part of me that clings to the worry. Its in my human nature to want to control, get things done and worry about the outcome. Relinquishing these things is what God desires for me and for everyone. To rest in quietness and trust him fully, because he is knows what is best and is in control. A few days ago I asked you to pray about me getting into Mayo, but what I really need prayer for more than anything is that I will be quiet and trust in God.
"…In quietness and trust is your strength." -Isaiah 30:15
Anyone who knows me very well would probably describe me as someone who often has a certain amount of anxiety. I believe it frequently takes on the disguise as "drive"; always wanting to be moving or get something done. This can actually seem like a good thing at times, the desire to accomplish goals and see things through, but in reality the anxiety is a lack of rest and contentment.
When I first got really sick and had to go to Barnes Jewish Hospital, my mom got so aggravated with me, because the doctors asked me if I worried a lot and I told them no. My mom knows me pretty well and she knew this was not the full truth. Of course I worry!
The anxiety has been rapidly growing in me the past week. I am so tired of going to doctors and being sick. My attempt to get into the Mayo is because I am tired of going to doctors, being sick, and I can't afford the treatments that are required for Lyme. But here is where the anxiety and worry has started building up in me…what if I don't get into Mayo, what if I do get into Mayo and they ignore my pain or aren't open to Lyme or try to pigeon hole me into a diagnosis because they aren't sure. What if I need to go to this place in Arizona instead of Mayo, because they have been studying and treating Lyme for a decade. What if, what if, what if??????? Let me just tell you I have not been at peace.
So, I was praying last night as I woke up throughout the night the scriptures about anxiety and God's consolation. This morning as I am spending time with God, the two scriptures from my devotional are about trust and quietness. When we trust in God, our creator - the one who knows all things and is in control of all things, the path we should walk becomes straighter and not so curvy. Its the curves in the road that throw me off: like learning to ride a bike and once the corner comes up not knowing how to steer and thus falling to the ground. But trusting in God, letting him steer, my path becomes straighter and less scary. In addition when I allow my mind to be quiet and not filled with the "what ifs" my trust in God can grow and I can be strengthened.
Believe me, even as I write, I am having trouble allowing my mind and heart to be quiet and trust in God. There is a part of me that clings to the worry. Its in my human nature to want to control, get things done and worry about the outcome. Relinquishing these things is what God desires for me and for everyone. To rest in quietness and trust him fully, because he is knows what is best and is in control. A few days ago I asked you to pray about me getting into Mayo, but what I really need prayer for more than anything is that I will be quiet and trust in God.
Thursday, July 17, 2014
With Mayo Please
It is 3:40 AM and I can not sleep. Totally unusual for me; this never happens; when my head hits the pillow I am out. I have been in pain all yesterday, couldn't drive, shaking, grunting tick that I have etc. It was a very hard day. Luckily I have an amazing mother who took me to the appointment I thought I had (I had wrong day, it's not until today) and took care of my kids and myself for the entire day. Super blessed!
I am still uncomfortable, regardless of the fact that I have taken all the medicine I can take and have been laying down for hours now. Usually this medicine knocks me out but for some reason, not tonight. So, I decided to blog. I find it therapeutic and hopefully it helps others too.
The latest news in my life is that I am trying to get into the neurological department at the Mayo Clinic. It is difficult to get into the Mayo. I was denied over a year ago when I tried, but I have regressed drastically since then and just about exhausted my resources here. When I called to ask for an appointment and gave them my history I literally said, "Please do not deny me an appointment. I have 3 kids and it is very difficult to function." It takes about 2 weeks for them to review my case and make a decision on if they will see me.
If you are reading this, please pray. I know God is able to get me in if that is the next step I need to take. I am trying to do my part by calling my doctors and having them contact the Mayo to recommend me. Not sure how much that helps at this point, but like I said, "God is in control."
I decided it was time to go this route by some prodding of friends and doctors. Also, while I believe that ONDAMED and Chinese Herbs with Acupuncture have been beneficial, I am still struggling majorly (I do recommend both of these treatments as alternatives or in conjunction with antibiotics). Plus, as you probably know alternative treatments are not covered by insurance. This makes a tremendous financial burden. I have decided that I can not continue to go further in debt and need to seek out the Mayo. If I am unable to get in; well I don't know what the next step will be but I trust God will show me.
Yes, I have written "trust in God and God is in control" several times in this post. I have really been struggling because I have done everything the doctors have told me to do. EVERYTHING, including seeing a psychiatrist!! That was a nightmare experience I don't care to write about now, but I am not giving up on that avenue either and will try to see another one. I am growing very very weary and the best thing I know to do is to feed my soul with God's promises. He is my rock. My peace. My joy. My deliverer. This is the scripture I have been going over and over this week…
"But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water… It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." -Jeremiah 17:7-8
What a comfort to have God's words to strengthen us. Thanks be to God.
I am still uncomfortable, regardless of the fact that I have taken all the medicine I can take and have been laying down for hours now. Usually this medicine knocks me out but for some reason, not tonight. So, I decided to blog. I find it therapeutic and hopefully it helps others too.
The latest news in my life is that I am trying to get into the neurological department at the Mayo Clinic. It is difficult to get into the Mayo. I was denied over a year ago when I tried, but I have regressed drastically since then and just about exhausted my resources here. When I called to ask for an appointment and gave them my history I literally said, "Please do not deny me an appointment. I have 3 kids and it is very difficult to function." It takes about 2 weeks for them to review my case and make a decision on if they will see me.
If you are reading this, please pray. I know God is able to get me in if that is the next step I need to take. I am trying to do my part by calling my doctors and having them contact the Mayo to recommend me. Not sure how much that helps at this point, but like I said, "God is in control."
I decided it was time to go this route by some prodding of friends and doctors. Also, while I believe that ONDAMED and Chinese Herbs with Acupuncture have been beneficial, I am still struggling majorly (I do recommend both of these treatments as alternatives or in conjunction with antibiotics). Plus, as you probably know alternative treatments are not covered by insurance. This makes a tremendous financial burden. I have decided that I can not continue to go further in debt and need to seek out the Mayo. If I am unable to get in; well I don't know what the next step will be but I trust God will show me.
Yes, I have written "trust in God and God is in control" several times in this post. I have really been struggling because I have done everything the doctors have told me to do. EVERYTHING, including seeing a psychiatrist!! That was a nightmare experience I don't care to write about now, but I am not giving up on that avenue either and will try to see another one. I am growing very very weary and the best thing I know to do is to feed my soul with God's promises. He is my rock. My peace. My joy. My deliverer. This is the scripture I have been going over and over this week…
"But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water… It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." -Jeremiah 17:7-8
What a comfort to have God's words to strengthen us. Thanks be to God.
Saturday, July 12, 2014
Thankful for Help
I haven't written much lately and especially on what is happening in my own body. No particular reason beside being busy and and not really loving to blog. I find it much like journaling, which I don't enjoy, only a bit cooler.
That being said, this will be a short post.
Thank you to everyone who is always so willing to help us. Life has not been easy but having others to help offset the load is a gift that I can't tell you how thankful I am for. Prayers, help with my kids, help with my house, help by being a listening ear, help with meals, help with making a room/bath so I can have someone live here at times to assist us, on and on and on. God has blessed our family in so many ways and I am thankful.
"A Friend Loves at All Times" - Proverbs 17:17
That being said, this will be a short post.
Thank you to everyone who is always so willing to help us. Life has not been easy but having others to help offset the load is a gift that I can't tell you how thankful I am for. Prayers, help with my kids, help with my house, help by being a listening ear, help with meals, help with making a room/bath so I can have someone live here at times to assist us, on and on and on. God has blessed our family in so many ways and I am thankful.
"A Friend Loves at All Times" - Proverbs 17:17
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