kpt812

Kim,
How did your appointment with John and Dr. H go today? Rocephin or other tx?
Hope you're doing well and am interested in how you're doing.
Leslie

Hi Leslie-

I had a great appt. with John yesterday but Dr. H was not in the office. He was suppose to be but John said he wouldn't be back until next week on Thurs. Anyway, I will be going back on IV starting with Rocephin and adding Zithromax IV. He said I am looking at probably a year so I will be having a port put in. He is going to run it by Dr. H but said they have already discussed it and to go ahead and have Dr. D here set up the appt. for the line.

I asked John lots of questions that I always wondered about and he answered them all for me. He really knows his stuff. I brought out my most recent tests and said he thinks maybe I have been re infected since I had a pos Babs titer recent infection. So for now I am still on Malarone, Plaquenil and Zithro. My CD-57 was 45 which is down from the one in Feb when I was feeling good. 

He spent over an hour with me and it wasn't rushed so I felt really comfortable. So I am going to call my doctor here on Monday and get things going. He wants me back out there in 6 weeks to see Dr. H to see how things are going.

It rained the whole way out and the whole way back but at least it wasn't cold. We did have a great dinner in Danbury CT! I will write next week and let you know how things are progressing. It really was a very interesting appt. Got lots of info on stuff.. Hope your husband is feeling better. Take care and I will keep in touch.

Kim

Hi Kim: I had answered one of your posts awhile back as I am from NH (currently in Dallas) and was wondering who your doctor was. I know we cant put doctor names on here, are you seeing Dr. H in NY  and Dr. D from Mass. or is there someone in NH?? You may email me personally.   Thanks  D dianebolton@hotmail.com

Hi Kim,
Excellent to hear how well your appointment with John went! That's great that you'll be going back on rocephin as well as lV zithromax. How do they decide how long tx will be for? Just wondering as my husband is in the beginning of this journey battling 20 years of lyme and co-infections. He's limping along in week 3 of rocephin with major fatigue and cns symptoms. I imagine he'll be on months of lV as well.
The port should make the long term tx easier for you than the picc line. Encouraging to hear how informative and thorough John was with you. Does your insurance cover the port and long term lV abx? We're going month to month with insurance for lV yet will continue out of pocket if/when insurance denies.

Curious what restaurant you went to in Danbury. It's nice to make the trip there special in some way with the long travel. We once went to a place near Danbury called Good News Cafe that was amazing. We usually go to Terrapin in Rhinebeck whenever we go to Hyde Park.

You must be relieved to have all your Docs in agreement about the lV and the prospect of better health- even with the long haul ahead.

Best to you. Keep in touch.
Leslie

Hi Leslie-

I had major fatigue too when I started Rocephin. I actually was only giving myself half the dose for like a week. I couldn't handle the whole thing. I also almost quit it but luckily hung on and kept at it.

My insurance will not cover any of the IV meds only the visits from the nurse to change the bandages. They also will cover the supplies.  We will get the Rocephin through our prescription plan and mix it ourselves. My husband luckily is a pharmacist. The first time I was on it they only covered 2 months and we got the rest through the prescription plan.

John said this will be a long term treatment meaning over a year if I make progress. I will be pulsing the Rocephin with Zithromax. I am not sure why but that is the plan as of now. I am afraid and happy at the same time because I remember how well I felt before and just hope it will happen again.

The restaurant we went to is called Chucks Steakhouse. We were in before six so they had a special menu where the prices were half of the dinner menu.  I had scallops which were really good. They had a great salad bar too. The other place that is fun to go to is the Culinery Institute. You have to make reservations way ahead of time though. They have five different restaurants and you can go online and check out the menus. That is in Hyde Park.

I am suppose to go back out the first of January and see Dr. H but haven't made the appt. yet. I did want to mention that John did tell me that some patients just don't absorb oral abx well and that could be why the Rocephin worked where none of the orals have. I do have Crohn's Disease too so I am not sure if that has something to do with it.

I will keep you posted on when I get things going. I Have to get in touch with my doctor here tomorrow. I would like to start ASAP so maybe I will be feeling better by Christmas. I just told my boss today what was going on and he said whatever time I need just let him know.

I hope your husband feels some improvement soon. It took me 5-6 weeks and then I started having good days. I will talk to you soon. Take care!

Kim