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lillimul..about my appt

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Posted 1/21/2009 10:31 PM (GMT 0)
Hi Leslie-I had the phone consult with JF last night. It was suppose to be at five but I couldn't get through until six thirty. It was kind of a depressing conversation. He really doesn't know why I am not feeling better this time around. He has upped the Rocephin to 2x daily with four days on and 3 off. He didn't want to start the Zithro  IV at this time. He also put me on Enula and Circulation P which I know is a Zhang herb. He took me off Malarone too.

He also spoke about sending me to a chinese medicine doctor in Vermont to see what he could do for me. I am getting the impression he won't keep me on much longer. I know there are quite a few meds I haven't ever been on so I am not sure what is going to happen. He was not encouraging at all. I am hoping my doctor here will continue to treat me if they won't any longer.

I will keep you posted on what happens. I am suppose to have another phone consult in 4 weeks and if I haven't had improvement then I think he will cut me loose. Take care and I hope your husband continues his progress.

Kim

Posted 1/21/2009 10:37 PM (GMT 0)
Kim hang in there!! What state are you from?
Posted 1/21/2009 11:09 PM (GMT 0)
Kim,

I hear your discouragement and I wonder why a doctor would "cut you loose". I have hesitated posting specifically what IV's I was on at the same time and for how long but here goes: I was on IV Rocephin, oral Zithromax and Mepron. Babesia and Lyme did not improve. Added IV Zithro to the mix and started pulsing the IV Rocephin. Slow improvement, but not enough to get excited about. Then added IV Clindamycin for three months. In all I was on IV's for over a year. A whole lot of improvement. Now going back to orals and injections. If you want to talk more privately, let me know and I will post my email address.

bcaring
Posted 1/22/2009 2:35 AM (GMT 0)
Kim,
I don't understand why they would cut you loose- did JF say something about that? What about a consultation with Dr. H? It seems like many people need to do the IV for a year and more- often with more than one IV abx.
Even though we like J a lot, Dr. H specifically told my husband that because he's complex, he want to manage his care until he figures out what will work- so doesn't want him to see the PA(J) again until he responds to tx which Dr. H has multiple plans to try.
I just don't get why they would cut you loose when every patient is different and there are so many different ways to get at the disease. Is it possible that you were getting him on the telephone at the end of a very long day for him? We find it more helpful to go down than the phone consultations. bcaring above found a combo that worked for her. I'm sorry you feel so discouraged- don't give up. I also can post my e mail address if you want to talk privately. We're all here on this forum to offer support to each other.
Leslie
Posted 1/22/2009 2:09 PM (GMT 0)

Leslie-I do think J was very tired and burned out plus he said he hadn't been feeling well. He certainly didn't seem himself. I was tired too so maybe I wasn't thinking clearly. Even my husband noticed because he was on the other line.

I think he feels that because I had already been in treatment a year before seeing them that everything has been tried. Although I had only been on amox-probenecid and ketek. Nothing else. I won't give up until everything has been tried. The impression was though that it was time to go in another direction with something else. It was just very discouraging and a upsetting conversation.

I just hope that I make some progress on this twice a day so I can report back in a month that things are getting better. I would love your email address so I don't have to post all my problems on the forum. Thanks so much for all the support you have given to me.

Kim

Posted 1/22/2009 2:14 PM (GMT 0)

bcaring-I was on IV for six months last year but had to have the line pulled because of gallbladder problems. I had great improvement and didn't want to stop. I tried bicillin injections but had no luck and gradually over the summer I relapsed.

I had read that you need at least a year on IV and the plan was to do Rocephin 4X a week and Zithro 3X but I am not sure that will happen. I do think I got the PA at a time when he had a long day and wasn't feeling well. I don't like phone consults at all but it is a 5 hour drive when he go.

I won't give up and I am going to do what I have to do. I have a very supportive doctor here but he doesn't really treat difficult Lyme cases.

Please I would like to email you so I can write more. That would be great. Thanks for all your support also. This forum has been a great help to me.

SickInCT-I live in NH

Kim

Posted 1/22/2009 7:24 PM (GMT 0)
Kim,
My private e mail is [email protected]

I'm glad to hear you won't give up. I can't imagine that practice abandoning you. Even with the IV rocephin, it can take months to turn a corner to start having better days and less fatigue.. and then there are still nonfunctional days in there. I look forward to communicating more with you.

take care,
Leslie
Posted 1/23/2009 3:15 AM (GMT 0)
Kim,

My email is [email protected]

Feel free to write.
Beth
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