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Regular Member

Date Joined Jul 2008
Total Posts : 104
   Posted 1/18/2009 8:15 PM (GMT -6)   
Hi Kim,
Good to hear from you though sorry to hear you're still struggling with severe fatigue with the rocephin. How long have you been on it?
Did you get your PICC line changed? I remember you were having some difficulty with it. Dr. H talked about possibly upping my husband to rocephin 2x daily if he isn't progressing more. He's only on his 4th day of rifampin so hopefully he'll maintain his progress without a terrible herx. It is only the last week that he is the best he's been since he started treating the lyme and co-infections a year ago. Hoping that he is beginning to turn a corner. It's encouraging.

I saw John last week when we went. He's very thorough. I'm taking samento and cumanda along with supplements. He says that once someone has disseminated lyme/co-infections with neurological symptoms, they always have spirochetes. So- he said I have to always watch this and go back on abx if I start slipping.

Please let me know how your phone consult goes and keep me posted about how you're doing. I hope you start feeling better soon.


Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 1/19/2009 7:27 AM (GMT -6)   

Hi Leslie-I will write tomorrow after the phone consult. I will say that I don't feel as bad as I did in December so that is progress. I had no problems on the herx at all as far as I know. I am actually going to ask John if I can restart it since everytime he takes me off I seem to slide backwards. I definately want to up the Rocephin to 2x so if Dr. H mentioned it to you then that gives me encouragement that it is something he would agree to. Hopefully John can make that decision. 

My picc is fine..they did an xray to make sure it was still in the proper place and it was. I have no more discomfort at all. Hopefully it will last as long as my other one did.

I won't make this too long since I will be posting back tomorrow. So happy to hear your husband is progressing. Once I turned that corner last year I just kept feeling better and better so good things will continue to happen. Take care


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