kpt812 checking in

Hi Kim,
Just wondering how you're doing. I hope things are coming together with your Port and antibiotics. Your fatigue seems debilitating like my husband's fatigue, and I hope the new treatment brings you better health again. I was sorry to hear you probably got bit again. There is no safety with this illness from reoccurrence.
Thank you for the information about the appeal, John's letter etc. We're still waiting to get a letter from John and will appeal but most likely will be paying out of pocket. We've already arranged for a month supply of rocephin while waiting the appeal process. It is now 4 weeks that my husband has been on rocephin and he is just beginning to spend half a day awake with some improvement in cognitive function. It pains me that insurance is based on outdated, political IDSA guidelines. Was thinking about you and checking in on how things are going.
Leslie

Hi Leslie-

Thank you for thinking about me! Just as I was walking in from work today the phone was ringing (4:30) and it was John. He said that he and Dr. H talked about my case today and Dr. H agrees with him that long term IV is the right thing to do. He is going to call my doctor here on Monday and make sure the arrangements will be made. I really don't think I was re-infected. I think being on the Malarone made the Babs test positive. Just my opinion though.

I was hoping to get in in quickly but I think it will be a few more weeks with the holidays and all. We already have the Rocephin and now I just need the line. I feel so lucky that our prescription plan covers this. We will have to buy the IV supplies but that is alright. John's appeal gave me one more month so I had a total of two paid by insurance. The strange thing is they would pay for the visiting nurse to come out everyweek. I honestly don't know what I would do if our plan didn't cover the IV meds. I know it is the only thing that will get me well.

The fatigue is brutal. I don't know how people live with this for years and years. I have had it 4 years now and it seems like a lifetime. Everyday it varies in how bad it is so I never know. Sometimes when I am scheduled to work I can make it through and other days I just pray I will make it through. It has been a nightmare as you know. If I had to deal with alot of pain too well I don't know..

Good luck with the appeal process. Maybe you will be lucky and they will pay for a few more months. I hope they do. Keep in touch please and let me know how you both are doing. I will write when I get my appt. which hopefully they will call me  with next week.

Take care.

Kim