I know it has been some time since I have up dated my blog. Sorry for that. Sometimes it is just hard to put how I feel in words. Since the last post we have had another appointment with the infectious disease doctor. He was curious to know if I had been exposed to mold. Yes, I have been as we had it in our house. To make a long story short I was tested to see if I had mold in my body and I did. So, now we are treating the mold with another drug to get it out of my body so I can react to the drugs needed to fight the other things going on.
I can not express enough my thankfulness to find a wonderful doctor who believes in chronic Lyme disease and studies all the time to find out new ways to make his patients better! I fought a long hard fight in the area and it went for over 16 years on deaf ears. That is my prayer that the medical professionals in my area will realize yes, we do have Lyme disease in IA. I try to hard not to be bitter as I think if we would have known so many years ago what we have found out in the past few years my life would be so different. One little tiny tick. Life is changed. I often say all for a reason. That is what I remind myself and my family almost daily. All for a reason. God knows. We may never know until we meet Jesus and then I am thinking we won't care!
That one little tick has changed not only my life, but my families life. I often feel like I am not the mother, wife or grandma I could be if that one little tick didn't change it all.
I also know I am still the same mother, wife and grandma God has chose me to be. I can still love them and show them love as if that one little tick hadn't changed our lives.
I also know I have to choose every day as to not live in fear. What is still coming? What does our future hold? I have to choose to enjoy life as much as possible. Some days aren't so much fun, but other's are. Then I have to remind myself thank you God because this could all be so much worse! My life is terrific compared to a lot of people so thank you God for all you have given me, all of it is for a reason.
Family 2011
Sunday, June 10, 2012
Thursday, April 7, 2011
Doctor Appointment on April 5
Julia and I went to Dr Br in Kansas City on Tuesday.
I will try to wrap my brain around what he said
Basically we are going to go on with the aids drug we are using plus the other stuff I am on and adding supplements to this.
He has been doing a lot of research and has found great information about the supplements he thinks will help in the fight against the xmrv virus. After two months we will see how things are going as in blood test etc, then they may add the other aids drug back. (the yucky one)
We felt very confident in all he had been studying and he is on top of all the different researches as he has been an infectious disease doctor for a very long time. He said this virus is a retro virus as aids that is why he is treating it as he would aids patients.
I will stay on the antibiotics for the lyme.
He also has found a new malaria drug is now available in the US for the babesia. I have been trying to find a pharmacy that has that one, so far no luck. I was excited to hear about it as it is only a three day treatment. 4 pills a day for three days. So then maybe I can go off the malarone that has been bothering my stomach.
So that is about all we know for now. It is a lot to keep straight and I am very thankful Julia can go along and listen and keep it all straight for me. After about two sentences about this cell and that cell I am lost!
He said all the symtoms from the drugs are very normal and most patients have some type of symtoms, so I guess I am normal after all!
A friend sent me this quote. I find it is perfect! Some days the fight gets so hard but I know God is in control!
We don’t live according to our own plans. We live by God’s plan. And as the church chimes playing “God will take care of you” told me, He will always take care of us. Maybe not by shielding us from evil, but by giving us the courage to face it.
I will try to wrap my brain around what he said
Basically we are going to go on with the aids drug we are using plus the other stuff I am on and adding supplements to this.
He has been doing a lot of research and has found great information about the supplements he thinks will help in the fight against the xmrv virus. After two months we will see how things are going as in blood test etc, then they may add the other aids drug back. (the yucky one)
We felt very confident in all he had been studying and he is on top of all the different researches as he has been an infectious disease doctor for a very long time. He said this virus is a retro virus as aids that is why he is treating it as he would aids patients.
I will stay on the antibiotics for the lyme.
He also has found a new malaria drug is now available in the US for the babesia. I have been trying to find a pharmacy that has that one, so far no luck. I was excited to hear about it as it is only a three day treatment. 4 pills a day for three days. So then maybe I can go off the malarone that has been bothering my stomach.
So that is about all we know for now. It is a lot to keep straight and I am very thankful Julia can go along and listen and keep it all straight for me. After about two sentences about this cell and that cell I am lost!
He said all the symtoms from the drugs are very normal and most patients have some type of symtoms, so I guess I am normal after all!
A friend sent me this quote. I find it is perfect! Some days the fight gets so hard but I know God is in control!
We don’t live according to our own plans. We live by God’s plan. And as the church chimes playing “God will take care of you” told me, He will always take care of us. Maybe not by shielding us from evil, but by giving us the courage to face it.
Sunday, February 13, 2011
Valentines Day 2011
As I sit here thinking about how I haven't written on my blog for a very long time I have decided today is the day to continue on talking about my journey. I had a couple a ha moments in the last while and I feel like I need to share them. The journey I have been on has been tough for the last while. I am tired of pretending everything is ok. I try to be tough and not let anyone know how I really feel because as God has told me I am stubborn. I think I have to be tough, I think I can just fight on and not let other's know how I really feel. I had a dear friend tell me that I need to honest so people know how to pray for me. Well, I have felt that people get sick of hearing about me being sick and tired so I pull myself up by my boot straps and try to fight on. I feel I am going on alone. I know my family probably knows more than anyone my day to day struggles. They know the pain and frustration. I let my husband see the good, the bad and the ugly. He knows. But, I felt like if I could just handle this I could do it and plug on. Then as I was in prayer it was if God told me "why don't you let me fight for you for awhile". I am 52 I do know better. I know I am not alone, I know God has not deserted me, but I feel like maybe He is growing weary of me too! I am weary of me! Truth is, I feel rotten. I am discouraged, weary and tired. I feel like my fight is gone.
I found out that I do have the xmrv virus. It is all so confusing to me. I am so thankful my family does the advocating for me. I don't understand it all. I just know the new drugs I have had to start is making me feel the worst I have felt since begining this whole process! I have had many days where I do not even get out of bed. As I talked to the nurse the other day she said this is a rough, rough road and we know you are tough so hang in there. Again I was hit with why am I so afraid to let other's know what is really going on. Why do I have to put on the "tough" act when really I feel beaten down right now. I think that is where my stubborn "dutch" attitude comes in again that I feel I have to be alright on the outside so no one can really know what is going on inside. I will never forget the example a junior high teacher gave us once in class. The outside of us has to appear perfect that is what the world sees, God sees the inside, He sees everything and He loves us no matter how crappy and full of garbage our insides are. The teacher spoke on about how we love to have the outside of our cars spotless, but when you open the door what is really in there? Everything on the inside isn't always as it seems on the outside. Same with humans. We can try to be perfect in every way on our outsides, but God doesn't care about that as much as He cares about how our insides are with Him. He isn't weary of me even if I am, He loves me no matter what! I often have little chats with God. I will say if you want this or that do that. I don't know why, just seems to be how I work. I was praying "in bed" alone no tv, no radio, alone in the quiet and I was so weary and tired I said God I am done I can not do this treatment anymore. I am trying to fight on and let you use me however you choose. I am fighting on for my family and my 5 little grandchildren who mean the world to me, but guess what you are going to have to show me a sign to fight on or I will quit. No more drugs. Just let the disease do with me what it wishes. Before I could say "Amen", the phone rang, my best friend called he has been my best friend for over 35 years, he is my husband, he called and said "hey honey I know you don't feel good today but get on your clothes and ride in the truck with me to take a load of corn in", so guess what I did? Yes, I listened and got on my clothes I could be seen in public with and took off. Thanks God, that was my sign. I know I get signs all the time. We all do. Do we listen? Do we do what our signs tell us to? I know God has a plan for me through this all. Who knows what His plan is? I just know I really am NOT in control. Even though I think I am, I am not, and Praise the Lord, He is!! So on I fight. Really on we all fight. The whole family has really been effected through all we have been through. So we all fight on together. Isn't that is what it is all about? Loving each other well. Through the good and bad. Yes, we fight on.
I found out that I do have the xmrv virus. It is all so confusing to me. I am so thankful my family does the advocating for me. I don't understand it all. I just know the new drugs I have had to start is making me feel the worst I have felt since begining this whole process! I have had many days where I do not even get out of bed. As I talked to the nurse the other day she said this is a rough, rough road and we know you are tough so hang in there. Again I was hit with why am I so afraid to let other's know what is really going on. Why do I have to put on the "tough" act when really I feel beaten down right now. I think that is where my stubborn "dutch" attitude comes in again that I feel I have to be alright on the outside so no one can really know what is going on inside. I will never forget the example a junior high teacher gave us once in class. The outside of us has to appear perfect that is what the world sees, God sees the inside, He sees everything and He loves us no matter how crappy and full of garbage our insides are. The teacher spoke on about how we love to have the outside of our cars spotless, but when you open the door what is really in there? Everything on the inside isn't always as it seems on the outside. Same with humans. We can try to be perfect in every way on our outsides, but God doesn't care about that as much as He cares about how our insides are with Him. He isn't weary of me even if I am, He loves me no matter what! I often have little chats with God. I will say if you want this or that do that. I don't know why, just seems to be how I work. I was praying "in bed" alone no tv, no radio, alone in the quiet and I was so weary and tired I said God I am done I can not do this treatment anymore. I am trying to fight on and let you use me however you choose. I am fighting on for my family and my 5 little grandchildren who mean the world to me, but guess what you are going to have to show me a sign to fight on or I will quit. No more drugs. Just let the disease do with me what it wishes. Before I could say "Amen", the phone rang, my best friend called he has been my best friend for over 35 years, he is my husband, he called and said "hey honey I know you don't feel good today but get on your clothes and ride in the truck with me to take a load of corn in", so guess what I did? Yes, I listened and got on my clothes I could be seen in public with and took off. Thanks God, that was my sign. I know I get signs all the time. We all do. Do we listen? Do we do what our signs tell us to? I know God has a plan for me through this all. Who knows what His plan is? I just know I really am NOT in control. Even though I think I am, I am not, and Praise the Lord, He is!! So on I fight. Really on we all fight. The whole family has really been effected through all we have been through. So we all fight on together. Isn't that is what it is all about? Loving each other well. Through the good and bad. Yes, we fight on.
Tuesday, August 24, 2010
Slumber Party
Papa and I decided we wanted to have a slumber party with the grandkids before
school started. Well, we finally got it done a few days before school started.
The kids are so much fun. They are growing up so fast. It seems like just yesterday the oldest was born and she will be 7 in September! Hard to believe!
We made tie dyed T shirts. How fun and messy was that? They all picked out their own colors and papa and I helped them put it on. The hardest part was waiting 6 hours to look at them.
They even slept the night! Papa slept with them, I headed to the soft bed around midnight.
I realized that night how much we can teach these little ones. They are like sponges. They soak up so many of the things we do and say. Kind of a scary thing. What a lot of responsibility we have with our children and grandchildren.
Yes, this is why I keep fighting the fight of this disease that has claimed so much of my life. Those little stinkers deserve to know their grandma. I would love to be a more
"fun" and energetic grandma, but they don't care, I am grandma. They love me just as I am. Kids can teach a thing or two. They are so accepting of people. They don't judge. They accept you for who you are and love you for that. Thank you Jesus for these precious children!
I have been notified the test we have been patiently waiting for has been suspended indefinitely. So, I know everything is in God's hands and happens for a reason, but I am feeling very frustrated by it all. Patience is a hard thing to learn! For now I will go on in the treatment I am in to keep things at bay. Yep, that is why I fight, because I have to. I have a family that loves me even through my weakness. They love me for me.
I have been doing a lot of pleading with God, if you heal me I will..... but, maybe that isn't in God's plan. I am sure He has it covered. So glad He is in charge and I am not.
school started. Well, we finally got it done a few days before school started.
The kids are so much fun. They are growing up so fast. It seems like just yesterday the oldest was born and she will be 7 in September! Hard to believe!
We made tie dyed T shirts. How fun and messy was that? They all picked out their own colors and papa and I helped them put it on. The hardest part was waiting 6 hours to look at them.
They even slept the night! Papa slept with them, I headed to the soft bed around midnight.
I realized that night how much we can teach these little ones. They are like sponges. They soak up so many of the things we do and say. Kind of a scary thing. What a lot of responsibility we have with our children and grandchildren.
Yes, this is why I keep fighting the fight of this disease that has claimed so much of my life. Those little stinkers deserve to know their grandma. I would love to be a more
"fun" and energetic grandma, but they don't care, I am grandma. They love me just as I am. Kids can teach a thing or two. They are so accepting of people. They don't judge. They accept you for who you are and love you for that. Thank you Jesus for these precious children!
I have been notified the test we have been patiently waiting for has been suspended indefinitely. So, I know everything is in God's hands and happens for a reason, but I am feeling very frustrated by it all. Patience is a hard thing to learn! For now I will go on in the treatment I am in to keep things at bay. Yep, that is why I fight, because I have to. I have a family that loves me even through my weakness. They love me for me.
I have been doing a lot of pleading with God, if you heal me I will..... but, maybe that isn't in God's plan. I am sure He has it covered. So glad He is in charge and I am not.
Saturday, May 8, 2010
Mother's Day
I have been doing a lot of thinking this week. Sometimes it is hard for me to put my thoughts on paper, but today I feel like I need to. I really don't know why.
Since we have been back from the doctor in Kansas City I have felt very conflicted. I am trying not to think about it all the time. Trying to learn patience. I know it is all in His hands. Most days I deal with that quite well. Others, not so much. I just pray I get the chance to be in the study. I know that is the way we can be lead to a cure. So we all pray.
Every day I wonder is this the day they will call? I know I am on the list, so we pray. I don't want to feel angry and unsettled. I just want my old life back. I think know it is Mother's day and Tulip Time this week have made it worse. I don't want to be a whiner. I want to continue to act tough. Just not today. I need a day to whine, throw a fit and just be sad. I am mourning something. As a very good friend put it today you just want the old Dee back that could walk around Tulip Time, eat all kinds of crap and feel horrible. Yep, that about sums it up! Plus put in there trying to work 15 or more hours a day and all the stuff that was involved with that. So, maybe it wasn't as glamorous as I am thinking! This year I am cuddled in bed watching HGTV and warm. It looks very cold out today so yes, I am thankful I am home! If I could just get them to deliver a strawberry smoothie!
Then the remembrance that it is Mother's day tomorrow. What a great day to honor Mother's everywhere! I think of my mom what a strong Christian woman she was. When I think of being a child I knew when mom meant business. No back talk or a good soap washing of the mouth was in order. She had a yard stick that she knew how to use too. I think there were a few times I maybe should have had it but it slipped by. Wow did that smart. Thinking of the back hand she had she maybe should have tried golf. She could have been on tour I bet! I think of the challenge of raising three children alone after losing her best friend, husband and partner at the age of 44. I really don't know how old mom was I am thinking 41. That seems so young to me today. I know it was then too, but now that I am older and wiser it seems very young. I am sure she had many days she wondered how she was going to do it all alone too, but she had a friend in Jesus. Many times I would find her alone reading her Bible. She made sure of it. She had a close relationship with God and nothing could shake that. When I think of mom I think of her favorite Bible verse. Jeremiah 29 "For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen." Yes, I can understand how this was mom's verse. I am sure many days she wondered "why" God and how am I going to raise these children alone and I am sure she had many questions for God. She was a good mom. A wonderful example to us. How God is there for us each and every minute of each and every day. I get it now. I am sure I gave her plenty of grey hairs. In the end it doesn't matter, she is singing praises in Heaven and rejoicing with Her almighty Father! She lived her life for Jesus. That is all that mattered. Yes, now I am claiming that verse too. I love that verse. Mom died so suddenly, no last words, no good byes, just gone. Makes you think of the last words you say to everyone you meet. I will never forget the last words I said to my mom, "ok mom gotta go, talk to you tomorrow" and as always "love you" I love the Love you I said and the "love you's" I hear.
I also am so thankful for the Mother-In-Law God gave me. We had so many wonderful times together. So many times we would just giggle about nothing. I am sure many times people thought we were crazy and yes, we were. I often wonder what she must have thought this 16 year old girl marrying her son. She may have thought some things, but I never felt she judged me. She accepted me, loved me, and taught me so many things. We butchered more chickens in the summer. Doesn't seem I have needed that skill in many years, but I still will know and remember how! She was an awesome teacher. She taught by example and kindness.
I appreciated her so much and since we lived so close I was so thankful for our relationship. She truly was my best friend for many years! We did so many things together and shared a lot of laughs. It was so hard to see her suffer the few months she was ill. I do cherish the many long talks we had. If she couldn't sleep at night we spent the whole night talking at the hospital. The words I will always cherish from her were "thank you for being such a good wife to my son". Yes, those words meant the world to me coming from that dear woman. She taught me how to be a Mother-In-Law. Think but don't always speak what you are thinking. I do struggle with that sometimes! :) I loved her so much.
I wonder what kind of mom I have been. I tried. I did the best I could with what I knew.
I stole that from Joyce Meyers. I figure that is why we have therapist in the world. I loved my kids with all my heart. Still do. I am proud of the kid's we have. They are alright. The are not only our kid's, they are our friends too. When I had a baby at age 17 I did not realize how much that baby would change my life. I don't think at that age things settle in your brain like they do when you get older. I couldn't believe at how perfect and beautiful she was. God knew I needed a good baby and she was an awesome baby. Now, that baby is a mom. As I watch her with her family I know how she feels. She is a good mom. Her little girls I pray will be mom's too someday. You have a love for your children in your heart so deep you can't believe it. You want to protect them, you want what is best for them. That is when you know that God is the one in control. We can't keep all things bad and ugly away from them. We just can pray for God to take care of them each and every day. God gave me a daughter-in-law. We always prayed our children would find a mate that was a Christian. God is Good. I have a wonderful daughter-in-law too! I feel like I have known her forever and she is our family. She is so good to me. She is an awesome mom. She too is my friend. All the time God is good. Sometimes it doesn't seem like God is right beside us, but yes he is. As I look back over the years with the joys, struggles and sorrows, God was there with us, beside us all the time. He knew what we needed and he provided.
As another Mother's day comes and goes I am thankful for the mom's I had. I don't care how old you are, you still miss your mom's. I often think if I could just have them back for one hour or one day what would I say? So many things run through my mind and then I think. I will save it. We will have all of eternity to hash it all out!
Since we have been back from the doctor in Kansas City I have felt very conflicted. I am trying not to think about it all the time. Trying to learn patience. I know it is all in His hands. Most days I deal with that quite well. Others, not so much. I just pray I get the chance to be in the study. I know that is the way we can be lead to a cure. So we all pray.
Every day I wonder is this the day they will call? I know I am on the list, so we pray. I don't want to feel angry and unsettled. I just want my old life back. I think know it is Mother's day and Tulip Time this week have made it worse. I don't want to be a whiner. I want to continue to act tough. Just not today. I need a day to whine, throw a fit and just be sad. I am mourning something. As a very good friend put it today you just want the old Dee back that could walk around Tulip Time, eat all kinds of crap and feel horrible. Yep, that about sums it up! Plus put in there trying to work 15 or more hours a day and all the stuff that was involved with that. So, maybe it wasn't as glamorous as I am thinking! This year I am cuddled in bed watching HGTV and warm. It looks very cold out today so yes, I am thankful I am home! If I could just get them to deliver a strawberry smoothie!
Then the remembrance that it is Mother's day tomorrow. What a great day to honor Mother's everywhere! I think of my mom what a strong Christian woman she was. When I think of being a child I knew when mom meant business. No back talk or a good soap washing of the mouth was in order. She had a yard stick that she knew how to use too. I think there were a few times I maybe should have had it but it slipped by. Wow did that smart. Thinking of the back hand she had she maybe should have tried golf. She could have been on tour I bet! I think of the challenge of raising three children alone after losing her best friend, husband and partner at the age of 44. I really don't know how old mom was I am thinking 41. That seems so young to me today. I know it was then too, but now that I am older and wiser it seems very young. I am sure she had many days she wondered how she was going to do it all alone too, but she had a friend in Jesus. Many times I would find her alone reading her Bible. She made sure of it. She had a close relationship with God and nothing could shake that. When I think of mom I think of her favorite Bible verse. Jeremiah 29 "For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen." Yes, I can understand how this was mom's verse. I am sure many days she wondered "why" God and how am I going to raise these children alone and I am sure she had many questions for God. She was a good mom. A wonderful example to us. How God is there for us each and every minute of each and every day. I get it now. I am sure I gave her plenty of grey hairs. In the end it doesn't matter, she is singing praises in Heaven and rejoicing with Her almighty Father! She lived her life for Jesus. That is all that mattered. Yes, now I am claiming that verse too. I love that verse. Mom died so suddenly, no last words, no good byes, just gone. Makes you think of the last words you say to everyone you meet. I will never forget the last words I said to my mom, "ok mom gotta go, talk to you tomorrow" and as always "love you" I love the Love you I said and the "love you's" I hear.
I also am so thankful for the Mother-In-Law God gave me. We had so many wonderful times together. So many times we would just giggle about nothing. I am sure many times people thought we were crazy and yes, we were. I often wonder what she must have thought this 16 year old girl marrying her son. She may have thought some things, but I never felt she judged me. She accepted me, loved me, and taught me so many things. We butchered more chickens in the summer. Doesn't seem I have needed that skill in many years, but I still will know and remember how! She was an awesome teacher. She taught by example and kindness.
I appreciated her so much and since we lived so close I was so thankful for our relationship. She truly was my best friend for many years! We did so many things together and shared a lot of laughs. It was so hard to see her suffer the few months she was ill. I do cherish the many long talks we had. If she couldn't sleep at night we spent the whole night talking at the hospital. The words I will always cherish from her were "thank you for being such a good wife to my son". Yes, those words meant the world to me coming from that dear woman. She taught me how to be a Mother-In-Law. Think but don't always speak what you are thinking. I do struggle with that sometimes! :) I loved her so much.
I wonder what kind of mom I have been. I tried. I did the best I could with what I knew.
I stole that from Joyce Meyers. I figure that is why we have therapist in the world. I loved my kids with all my heart. Still do. I am proud of the kid's we have. They are alright. The are not only our kid's, they are our friends too. When I had a baby at age 17 I did not realize how much that baby would change my life. I don't think at that age things settle in your brain like they do when you get older. I couldn't believe at how perfect and beautiful she was. God knew I needed a good baby and she was an awesome baby. Now, that baby is a mom. As I watch her with her family I know how she feels. She is a good mom. Her little girls I pray will be mom's too someday. You have a love for your children in your heart so deep you can't believe it. You want to protect them, you want what is best for them. That is when you know that God is the one in control. We can't keep all things bad and ugly away from them. We just can pray for God to take care of them each and every day. God gave me a daughter-in-law. We always prayed our children would find a mate that was a Christian. God is Good. I have a wonderful daughter-in-law too! I feel like I have known her forever and she is our family. She is so good to me. She is an awesome mom. She too is my friend. All the time God is good. Sometimes it doesn't seem like God is right beside us, but yes he is. As I look back over the years with the joys, struggles and sorrows, God was there with us, beside us all the time. He knew what we needed and he provided.
As another Mother's day comes and goes I am thankful for the mom's I had. I don't care how old you are, you still miss your mom's. I often think if I could just have them back for one hour or one day what would I say? So many things run through my mind and then I think. I will save it. We will have all of eternity to hash it all out!
Saturday, March 27, 2010
Doctor Appointment
Yesterday mom and I went to Dr. Brewer again.
We told him that despite continuing treatment she was not improving.
He told us that some new and exciting things have been discovered (last fall). Recently a research organization has found that 95% of the chronic fatigue and fibromyalgia patients they tested were positive for the XMRV infection. This is a retro virus. It is similar in many respects to the HIV virus that causes AIDS. Brewer is an expert in AIDS and has been working with HIV patients since 1985, so he is very knowledgeable in this area. Mom’s symptoms overlap with babesia, chronic fatigue and fibro.
This virus has been around in animals forever. But it has recently (last 100 years) morphed into something that can infect humans. Mice carry this virus. Mice also carry babesia. So, Brewer thinks that if someone has lyme and babesia there is a good chance that the tick that bit them bit a mouse first. So, perhaps they got this XMRV from the mouse at the same time.
This virus works like HIV in that it suppresses your immune system. Not as bad as HIV, but it does. So, if your immune system is working properly then you cannot fight off something like lyme or babesia like a healthy person can. Therefore until you kill the virus you cannot get better.
They are doing a research study, he hopes it will begin this summer. They are working with Brewer because he is so knowledgeable with HIV. They have asked him to find people to participate in the study, he will put mom on the list.
First thing is sometime (hopefully this summer, but we have to be patient) his office will call mom and tell her to come to KC for a blood test to see if she has the virus.
If she tests positive then they are going to try treatments, probably with the anti-viral drugs that already work for HIV. There are about 25 HIV drugs, he thinks for sure that 2 of them look promising for this virus as well. It is going to be a guessing game at first though.
He said he feels like he has really had an awakening in the last 5 months or so. It is like HIV in the 80’s, it used to be everyone died, now it is manageable. But, these things do take time and study. But, it all makes so much sense though about why there are these few people, these odd ball cases that despite treatment just do not get better. He said all the experts think you guys are crazy, but there are just some people that cannot seem to get better. This may just be why you cannot get better.
He said for now she can continue with her babesia treatments or she can stop, it is up to her. At this point I think he feels that until we know if she has this virus it really is just spinning our wheels trying to treat it. He is having her continue with the antibiotics to keep the lyme from growing.
I am hopeful that this is the answer for why the treatments are not working. For mom and also for the thousands (probably millions) of people that suffer with this and other diseases that can’t seem to get any answers. We will pray for knowledge for the doctors working on this study.
For more info check out their website, it is www.wpinstiture.org
We told him that despite continuing treatment she was not improving.
He told us that some new and exciting things have been discovered (last fall). Recently a research organization has found that 95% of the chronic fatigue and fibromyalgia patients they tested were positive for the XMRV infection. This is a retro virus. It is similar in many respects to the HIV virus that causes AIDS. Brewer is an expert in AIDS and has been working with HIV patients since 1985, so he is very knowledgeable in this area. Mom’s symptoms overlap with babesia, chronic fatigue and fibro.
This virus has been around in animals forever. But it has recently (last 100 years) morphed into something that can infect humans. Mice carry this virus. Mice also carry babesia. So, Brewer thinks that if someone has lyme and babesia there is a good chance that the tick that bit them bit a mouse first. So, perhaps they got this XMRV from the mouse at the same time.
This virus works like HIV in that it suppresses your immune system. Not as bad as HIV, but it does. So, if your immune system is working properly then you cannot fight off something like lyme or babesia like a healthy person can. Therefore until you kill the virus you cannot get better.
They are doing a research study, he hopes it will begin this summer. They are working with Brewer because he is so knowledgeable with HIV. They have asked him to find people to participate in the study, he will put mom on the list.
First thing is sometime (hopefully this summer, but we have to be patient) his office will call mom and tell her to come to KC for a blood test to see if she has the virus.
If she tests positive then they are going to try treatments, probably with the anti-viral drugs that already work for HIV. There are about 25 HIV drugs, he thinks for sure that 2 of them look promising for this virus as well. It is going to be a guessing game at first though.
He said he feels like he has really had an awakening in the last 5 months or so. It is like HIV in the 80’s, it used to be everyone died, now it is manageable. But, these things do take time and study. But, it all makes so much sense though about why there are these few people, these odd ball cases that despite treatment just do not get better. He said all the experts think you guys are crazy, but there are just some people that cannot seem to get better. This may just be why you cannot get better.
He said for now she can continue with her babesia treatments or she can stop, it is up to her. At this point I think he feels that until we know if she has this virus it really is just spinning our wheels trying to treat it. He is having her continue with the antibiotics to keep the lyme from growing.
I am hopeful that this is the answer for why the treatments are not working. For mom and also for the thousands (probably millions) of people that suffer with this and other diseases that can’t seem to get any answers. We will pray for knowledge for the doctors working on this study.
For more info check out their website, it is www.wpinstiture.org
Tuesday, March 16, 2010
Dream Dream Dream Dream
I was thinking about that song as I was trying to blog again today. I have to get my thoughts out because I forget them so fast! I have the strangest dreams. Wow, they even shake me up sometimes. I am sure it is all the medicine I am on! Sunday night I dreamt I was with my family (kids and grand kids) and we were swimming in the ocean. Of course everyone started to drown and they all climbed on me ( I am very buoyant) and I was trying to save everyone. We were all sinking under the water and I was confused and couldn't figure out the top from the bottom, so I looked what I thought was up and I saw a huge light so headed for the light and saved us all! Yeah! Well, as I was trying to analyze this dream I decided as parent's we all want what is best for our family. What is the most important thing to a mom or dad? Well for me it is that all my family knows Jesus and has a personal relationship with Him. So to me this was telling me that everyday I need to be the mom and grandma God wants me to be so my family will see Jesus in me. Some days that may be harder to see than others so I need to work on that every day. Some days when I feel deep in my "valley" I don't show the light like I need to so another thing that shows me I am not perfect, I need all the love and forgiveness I can get this side of Heaven!
Last night my dream was very different. I have become aware of a new drug that could possibly change my life. It is very new. Lots of decisions to be made. So my prayer has been every day " God show me what to do." So my dream last night was I was watching my funeral. My friend Bev was the pastor, she did a good job! Of course there was humor, she knew I would have to have humor. My sister in law was in the kitchen taking care of the lunch. I always said my lunch had to be just blizzards, but Elaine was making sandwiches and coffee and with Elaine she was breaking dishes right and left so they kicked her out of the kitchen. They said she was going to cost more money than the church could afford so she had to leave. Anyway back to the funeral I was sitting up high my mom and dad on both sides of me and my grandpa and my mother in law was right there. We were watching what everyone was doing. As I was watching this I noticed my grandchildren. They were having a horrible time. I remember losing a parent at a young age and it does something to you. It rocks your world as you knew it. Losing a parent at 40 does something to you too. It is the natural progression as we know it, but it leaves an empty spot in your family circle. I had my answer, OK God I will wait. Some days I don't feel so needed and feel like a burden to others through this "valley" but I am here. Thank you God I can see my family when I want to. I can chat with them on the phone. Even my one year old grandaughter is chatting with me on the phone. I love hearing all their voices on the other end. How do they steal your heart so much? I will wait. Wait until God shows me it is time. But another thing that struck me was how the church wasn't full. How silly is that? I again was analyzing this dream ( no I am not a professional) and decided how many lives have I touched? How many people's lives have I made a difference in? How many times did I say the right thing to someone that they will remember me or how many times did I say the thing that could make them not want to remember me? Yes, we have a lot of work to do on this Earth. I am so thankful for all the people in my life that have touched me I pray I can re pay the favor to all of them!
Last night my dream was very different. I have become aware of a new drug that could possibly change my life. It is very new. Lots of decisions to be made. So my prayer has been every day " God show me what to do." So my dream last night was I was watching my funeral. My friend Bev was the pastor, she did a good job! Of course there was humor, she knew I would have to have humor. My sister in law was in the kitchen taking care of the lunch. I always said my lunch had to be just blizzards, but Elaine was making sandwiches and coffee and with Elaine she was breaking dishes right and left so they kicked her out of the kitchen. They said she was going to cost more money than the church could afford so she had to leave. Anyway back to the funeral I was sitting up high my mom and dad on both sides of me and my grandpa and my mother in law was right there. We were watching what everyone was doing. As I was watching this I noticed my grandchildren. They were having a horrible time. I remember losing a parent at a young age and it does something to you. It rocks your world as you knew it. Losing a parent at 40 does something to you too. It is the natural progression as we know it, but it leaves an empty spot in your family circle. I had my answer, OK God I will wait. Some days I don't feel so needed and feel like a burden to others through this "valley" but I am here. Thank you God I can see my family when I want to. I can chat with them on the phone. Even my one year old grandaughter is chatting with me on the phone. I love hearing all their voices on the other end. How do they steal your heart so much? I will wait. Wait until God shows me it is time. But another thing that struck me was how the church wasn't full. How silly is that? I again was analyzing this dream ( no I am not a professional) and decided how many lives have I touched? How many people's lives have I made a difference in? How many times did I say the right thing to someone that they will remember me or how many times did I say the thing that could make them not want to remember me? Yes, we have a lot of work to do on this Earth. I am so thankful for all the people in my life that have touched me I pray I can re pay the favor to all of them!
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