AJVDK

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.

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

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.

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

Hello All, Long time no see! Hope this finds you all doing very well, and enjoying this great June weather. Well things have been very hard for me latley. It's been a few months since I been around. I been in and out of the hospitals. Form Mayo to the local hospitals, from IV line probles to now, heart problems again. I am so tried of fighting, but I am not going to give in. Everyday is a day we are given, and it's a day to fight for and make the best of. The Lyme diease, and Babesiosis is still causing alot of problems (from heart damage, to alot of left side nerve damage, I am now in a wheel chair due to lossing ablitiy to walk more then 10- 15 feet, and draging my left side behind me.), plus the POTS is not stay controlled. I passed out and hit the floor on monday and had to be hospitalize and just got out. I am hoping they find the right mix of drugs, soon so that I can start recoving and enjoying more time with my family. Sorry I have not given an update sooner its just been very had to get out of bed, I know many of you have been there. I pray for the day when we all get better. Thinking of all of you. Hope to be able to talk to you all more soon as I get stronger! Have a great summer if I am not around much. Amy

Hello All, Sorry not been around much, I been trying to take care on myself and had to go back to Mayo again. Well after a long debate, trail and error, the ID, cardio, and POTs doctor (Nero) all have made the choice that for my health the port needs to go in. Even thought I keep getting infections in the line, not to treat would be worst. I am very scared as the results of the next infection could be fatal. This last time I had sepis I got transfer to Mayo. I am very uptight and worried, but I have not more options in order to keep getting fliuds, and meds this is the only way. Again thanks for all the support over the last years, I am thankful for all of you! Also welcome to all of you that are new as I have not been around much. Talk to you all soon!

Thanks everyone! I am sooooooooo happy! Nina- I am hangin in. I am still having a tough time, but this good news sure helps bighten the day. I am going to KS, MO. on later today, to see my LLMD, and then back to Mayo, on monday! We are hoping to get to the bottom of things and at least k now where to go from here in treatment. They are still talking about central lines, and now they are talking about a j tube. At this point I am not sure what to think anymore! I am just wanting a better quality of life, and would like to stop getting infections!!! Talk to you soon! Amy

Guess what I finally got Approved for SSDI!!!!! After 28 months I got it! It's even approved for POTS, and Lyme! Yeah!!!!! I am so happy, and I finally feel like, I can breath again and know I am able to feel like I am supporting my family! Thank you for all the support over the last 2 1/2 years, and giving me ideas, and ways to fight for my SSDI, and never give up!!!!!

Welcome Back! Gla d to hear from you!

Hello All, I wanted to drop a line and let you all know that I am back up at Mayo. They sent me up on tuesday, right now I am undergoing all the test to find out if there is anything that can be done to help. I can't wait to get back home! I wanted to drop aline and let you all know whats been going on! I will let you know more once I I have to to explain everything! Again thanks for the support! Amy

Happy B-day, Sorry I missed it! Hope you had a great day! Amy

Hello All, I wanted to thank you all for your support over the last three weeks. It?s been a long road. Well as many of you know I got another sepsis infection, they had to remove my central line, and due to how bad this infection was they sent me to Mayo, where the also agree that I am to the point the infections are going to kill me. Due to having a pacemaker, and ongoing line infections the pulled this line, and are trying not to place another. (They don?t have high hope that I will make it and all ready have a plan in place for a port to be placed by a surgeon At Mayo.) Well they where right when it come down to it. I made it 5 days before I was not able to handle it, and taken my to hospital due to passing out and heart racing. So I am right now waiting to go back to Mayo, It looks like we will be going back on Monday or Tuesday to have a port placed. (Waiting on the call back) I am worried as they say I am at high risk? but there are no other options anymore for me. I feel like I am running out options. We hope with the upcoming testing that they will find some answers that will help to improve my quality of life. I just want to start feeling better, and be able to be a better mom, and wife?.. Any more I live in my bed?? is it so wrong to want more? I just am not willing to give up till we have tired everything. Again thanks for all the support, and please keep me and my family in your thoughts as we continue trying to get answers.

Thanks for all the support I am finally home from Mayo, but am having a very hard time will update you all soon I am up to it! Again thanks for all the support! Amy

Happy B-day! Hope you have a great day! Amy