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

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!

Sisters

Yes on March 9 my sister turned 60. As I was thinking about my life with my sister I realized yet again how blessed I am by having the family I have. I used to think 60 seemed really old, not so much anymore. I am so thankful for my "much older" sister. I think I owe her an apology. I don't think I was maybe the most fun little sister. I remember getting into her stuff all the time when she was gone. She is 8 1/2 years older than I am and wow I used to have fun with her stuff. I can still see my mother's face peeking over the back of our couch and catching me in the middle of a hair cut on my sister's beautiful special doll. I had a scissors in one hand and a hand full of very long hair in the other hand. Of course I had to finish the job or the poor doll would have looked really bad. I used to love to play in her makeup. Mascara was my favorite. I also tried several times to get her contacts in my eyes. I can still remember crawling around on our very short pile wool carpet trying to retrieve a contact and the sweat forming on my forehead thinking what will happen when she opens her contact case and there is no contact in it? I ran my hand over it and was so anxious to get it back in the case and I swore I would leave that alone for a few days. My brother and I loved to find dead mice and leave them lay on the floor outside the bathroom door when she was in there so we could hear her scream when she opened the door. Now I would say I have had pay back as I am petrified of mice! Yes, I would say I owe her a few apologies. She had to share a room with me until she was married and I always wanted to chat when she wanted to go to bed. Imagine that! We are sister's. Very different but still share a lot of the same. We both love and cherish our families, we both love the Lord and we both know what it is like to share the bond of sister's. A few years ago my sister battled breast cancer. It was a scary time. Scary for all of us. Thank the Lord she beat the cancer and God has spared her life and continues to use her in all of our lives. So if you have a sister give her a call and tell her you love her and apologize. Guess I best get to the phone.

Desert

Yes, I kept wanting to call it dessert too. Dessert sounds way better than desert.
After hearing Keith preach on being in the desert a few weeks ago I have listened to that sermon over and over. I get the desert thing. I understand the feeling like you are in a desert. I also understand at times God leads us to the desert to find our oasis in Him. I have decided I think I may be stubborn and think I can get out of the desert alone and I know better, I know I need Him to get out of the desert. So I need to work on that! I so think at times I can do this on my own and know that isn't how it works. On our own we are nothing. We need Him to lead us and guide us. God's time compared to our time can be so different. I want out of the desert NOW and maybe He doesn't want me out quite yet. I just pray I can learn from this and let Him lead me and quit being so mad about the whole deal. What a lot I have to sing praises about! I can see, I can hear, I can talk, I can think. Thank you God! I have a great husband, wonderful kids and really special grandkids. God is good. All the time. Even in the desert. I keep saying I love sun and sand, so maybe now I need to quit complaining about my desert and enjoy the sun and sand! Well maybe not enjoy, but sit in it a bit.
I do have some happy news. I had a lump removed off my back last week. The doctor thought it looked really strange and had trouble getting it out. I could tell he was stumped. So he sent it to the lab and it came back that it was an inclusion cyst, which can come from a insect. Well, my family swears that is where the tick was. Of course I don't remember. So maybe we have removed the root of evil! :)