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  • Birthday 04/26/1979

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    Near Dea Moines, Iowa
  • Interests
    Photography, Marketing, Camping, Spending time with my son, and just living one day at a time!

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  1. Yes my doctors agree with the Lyme DX but it was made to Mayo. With Mayo DX me its made it much easier. The infections have been from PICC lines, PORTs, and my pacemaker. I got MRSI, and can't seem to keep a line for treatment as I keep getting septic. I not with on line, and have only had to have IV fluids a few times since May which is great. I still have a feeding tube though. I hope that helps.
  2. Hello All, Wow is been a very long time since I have posted here, or even been on the site. I wanted to let you all know I am finally feeling like there is alight of hope. As some as you know my POT/ Lyme's had gotten very bad four years ago. Things got so bad for me that I was placed in a nursing home. After two years in a nursing home things where still getting worse. I was on IV's 24 hours a day, I was having infection after infection, sezious..... they transferred me to hospice where they gave me 3-6 months. While there things improved some the moved me to another nursing home where I was on full bed rest, again IV's, Feeding tube. I begin to lose hope that I would ever get better. Then finally in May of this year I went into septic shock, where I was on a vent for 8 days. Finally all my doctors where in on place. They treated the infection. After I was out of the ICU the move me to the cardio floor where. I was there for 3 weeks during that time the doctors worked close together. They came up with a new treatment plan. I was set back to the nursing home where my doctor here is working hard with my POTS doctors. with new meds I am finally doing better. I made 4 and a half mins standing before I started to pass out. I not been up that long in over six years. I am to get around in my wheelchair, and I am relearning how to walk with a walker (while my body will give me the time). I know that 4 and half mins does sound like much but its open up so much for me. If things continue to improve I hope to be able to leave the nursing this late fall or winter if I can reach the rest of the goals set. The doctors are going to required me to be un the wheelchair as it's not safe for me to be up by myself, as we don't know when I will pass out, but I can have a high quality if life in the chair. Plus we never know what the future holds. It's nice to finally see some hope, and I wanted to share this with all of you that have support me along the way. Thank you for all the prayers, cards, and those of you that came to see me it means more the I can explain. There is hope we just need to hang on until things get better! Amy
  3. Amy,

    I believe in MIRACLES,

    I SEE ONE in your future. BE OPEN

  4. Hello All, How are you all doing? I hope well. I not been around much, as I was in the hospital and then 6 weeks ago was transfered to nursing home for short trem care to work on health. I am hoping that I will be able to go hope soon. But PT, and OT is going slower then I would like. The passing out seems to finally getting better. It now only happening a few times a day. Due to the Lyme's I am still having problems with gait, and not able to walk yet. The goal is to get me safe enoght to be able to transfer from bed to wheelchair, and get some of the lyme stuff undercontrol and go home. I can not Wait to get home. My 7 years son miss me so much. I am about 30 mins away from where we live so I am only gwtting to see him 2 times a week so its hard. I am doing everything I can to get out of here and get home. Thanks for all the support, cards, and prayers over the last few months its nice to have your support! Take care. Wishing good health to all of you.
  5. Hello All, Well I am finally home from the hospital. I am hoping this time is going to before a while. Over the last 5 months I have been in the hospital all but 13 days. I been check over by more doctors, had more test ran, and then ended up with side effect after side effect. At the end of all if it I been told I can not sit up above 45 degrees. So I am stuck in bed. I have to have 24 hour a day care, to be at home. Plus the in home nurse, the PT, OT, and then a aid to help with baths. I am learning a new form letting people in. It?s been very hard for me to let go and also have to ask for help for everything. I got a new wheelchair I have a power-tilt chair now. I have not really got to use much but am hoping as things get better I will be able to get around more. Right now the doctors are not sure what is in store next, until the POTS, NCS, Lyme Disease, and co-infection are under control there is now real answers. During the last hospital stay, they tested me and the found I also have developed a problem with fructose, and lactose. So I am now on a Lactose free, and fructose free diet. So I am really learning to change many things right now. I want to say ?Thank you? to everyone for all the cards, and letter. It?s been so nice to have a large support system. It seemed like Mark was bring so many cards everyday to the hospital fro dinet members. Also as many of you know I was working on the T-shirt project, and over the last few months I was unable to do anything, Nina stepped up and took over the hole project so I could focus on my health recovery. Thank you so much Nina! Also to Michelle for making sure you all got update when possible, and her support though the last few months. Again Thank you all! Amy
  6. Emily,

    The LLMD finally called today and they are cutting everything back. I am going from 400 mg to 200 mg. If this doesn't help then we are stopping for two weeks and going to figure out somthing else. I am very fustrated as I just want to get better, and it seems like that never going to happen. I feel like this is my life. Maybe I just need to learn to deal with it. Sorry for g

  7. Emily,

    Thanks for all you support with all the Lymes stuff. I am so new to it. Hope you are doing good!

  8. Hang in there! I hope you start feeling better soon! ((((HUG))))

  9. OK I now know what you mean by a herx, wow! I am in so much pain. I called the LLMD, I have two choices stop for a week and go back on the IV, or stick it though. The besk thing if I can is stick it out so I am going to try but, I am not sure how long I can. I have pain in places I didn't know! also the headaches.....

    I thought I would drop a line, know I truly know why you where

  10. No problem Amy! I think it's really important that us lymie POTSies stick together, because our illnesses are so different and complicated.

    I really hope the IV antibiotics work for you and that you start seeing improvements soon!



  11. Thanks for all the pointers! Starting the treatment in the world of lymes is so crasy, not knowing what to do, and whats the right thing to do! It nice to know I am not alone! Thanks for the support!

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