Re: IV Meds

[Guest guest]

I have had trouble keeping up with the wonderful posts here. There is so much I

would like to comment on.

My daughter is almost 16 and has been ill for at least 12-13 years. She was

diagnoised with CFS/FM until Dr. J rediagnoised her with Lyme and Bartonella 22

months ago. She was on many combinations of orals the first year, and last June

we decided to try the IV that he had recommended. In July she had a port put in

her chest, and was started on IV Rocephin. Within weeks her energy increased,

and her days went from a few hours to 5-6 and even a few 7-8 hour days!! We were

thrilled. But at 8 weeks there was slight sludge in the gallbladder (even though

she was on actigal) and we had to stop Rocephin and switched to Claforan. For

another 4 weeks she took this IV and even though it caused stomach problems her

activity continued to be good. She was able to do more than even on a

sustainable basis with few setbacks. She had other issues, was no where near

normal health, but for her it was great! Then the end of Oct, she had a reaction

to the Claforan and it had to be stopped. (We found out in Jan. it was an

allergic reaction having gone to Dr. Harvey Gorrin in Westchester for testing.)

At this point our local doc who had been doing the IV orders under Dr. got

scared and refused to do any more IV orders.

So for the next few months we saw the benifits of the IV therapy return to her

pre IV activity level. The benifits were sustained for about a month and then in

Dec. her activity declined and in Feb was back to 0-3 or 4 hours a day. In Jan.

we got the orders to restart the IV but it has taken us a month to get it all

set up. We started it again last Wed, with Dr. J writing the orders and me doing

all the home care. She is now on IV Zithromax, and we are hopeful it will give

her the activity spike the other 2 IV meds did! We see Dr. J in 2 weeks and are

anxious to hear his thoughts.

I hate the aggressive therapies many of us allow for our kids, but feel in my

heart that this is what is needed for my daughter to kill off all that is inside

her making her so ill. I feel to not do anything, or to return to what we were

doing, would be resigning her to a life so limited she can barely leave the

house. At least with the treatments we are doing, we are hopeful she will have a

closer to normal life...It is so very hard to always know what is best. I trust

Dr. J so very much, and have put my daughter's care in his loving hands.