Have finally decided to do IV ABX after a year of treatment on orals and no real improvement.
I am switching LLMD's and my new doctor "plans" to use heavy doses of IV ABX (around 2 grams a day I believe)
If I can tolerate the herxes from that amount (probablly can't) How long do you think I will be on treatment? (been symptomatic for a little over 2 years)
The reason why is I am having to move to go see the doctor and I will be seeing her everyday of the week except sunday for treatment. She also uses a central line in the chest, how long can those stay in place at one time?
[ 24. January 2008, 08:32 PM: Message edited by: ByronSBell 2007 ]
Posted by ByronSBell 2007 (Member # 11496) on :
^ up
Posted by hostbody (Member # 12695) on :
I did 2 grams rocephin a day, through a central
IV for 7 months. My doctor wanted me to do
longer but I couldn't afford it anymore. My
insurance would only pay for 1 month. After 6
months I felt great! I'm a year later now and
starting with symptoms again....wondering if I
could of afforded to stay with it longer, would I
be in remission?
I had no problems with my IV. It was cleanned and
checked weekly by a nurse. I used plastic wrap on
my arm while in the shower - lot's of it!
Good luck!
Posted by ByronSBell 2007 (Member # 11496) on :
Well 7 monts doesn't sound too long, atleast to me...
I meant to say that I will be getting a line put in my chest and wonder how long one of those can stay in compared to a picc line (in the arm)...?
Did you do any other ABX at the time or just the Rocephin?
Posted by hostbody (Member # 12695) on :
just the rocephin. doctor took me off all other abx.
Posted by Clarissa (Member # 4715) on :
I'm not sure about the chest line...I had the picc line in my arm for approx 6-7 mos.
I felt the herxes were much less than with orals but then again, I was filled with yeast so my "herxes" could have been yeast build up-stomach pain.
I found it a preferable way to take abx but the line is kind of a wretched maintenance...but SO much easier on the stomach.
Posted by kman543210 (Member # 14009) on :
quote:Originally posted by ByronSBell 2007: I meant to say that I will be getting a line put in my chest and wonder how long one of those can stay in compared to a picc line (in the arm)...?
To answer your question about how long a CVC can be left in compared to a PICC. Will your CVC be a Groshong catheter? When I was 14/15, I had one of those in for 18 months while I was doing chemotherapy for cancer (I still have it in an album...lol). I had absolutely no problems with it and just wore a bandaid over the site where it went into my skin. There was a cuff on the inside to keep it in my chest, so I didn't use stat-locks with it. Back then, I think some people probably had them in for even longer.
I have a Groshong PICC right now and have had it for a year. I do my own dressing changes and infusions and haven't had any problems with it either.
The CVC in my chest was much easier to take care of because once it healed, I only wore a bandaid over the entrance site to prevent irritation and coiled and taped the tubing. I did not have to cover it when I took showers either. Only time I wore that plastic stuff over it is when I went swimming. I wish I had another one of those instead of a PICC right now since it was so much easier.
Posted by hanginginthere (Member # 11685) on :
I agree with kman. I've had a Groshong CVC for 18 months so far and have had no problems with it. You keep it covered with sterile dressing for the first month and after that--it's healed and open to the air.
I can shower with it (just cover it with a bandaid). I leave it uncovered during the day b/c bandaids irritate my skin. The only thing I haven't risked doing is taking a bath or swimming...I guess I don't want to press my luck
I think you'll find it very easy to live with!!
Posted by sfcharm (Member # 9392) on :
I too have a Groshong Catheter in my chest. After eight weeks I stopped covering the main site in my chest as my nurse said the skin puts a natural seal over the incision.
I shower daily and just tape the catheter to my chest with paper tape while showering.
It's a piece of cake. I've had it seven months and hope to make it to one year. Since December I'm really noticing a dramatic difference in how I feel.
I too spent one year on orals before deciding to give the Rocephin a try. Good luck and make sure they have you on a cyst buster while on the Rocephin.
Barb
Posted by ByronSBell 2007 (Member # 11496) on :
I think it will go something "similar" to
1. zithromax or similar 2. penicillin family 3. flagyl
those 3 over a three month period and treat any coinfections also
Posted by monkeyshines (Member # 6406) on :
I've had my chest port for more than 3 years now. I have never had a problem with it.
monkeyshines
Posted by Rianna (Member # 11038) on :
I had a hickman line and was on 2gms twice daily Rocephin 4 days a week.
I am also just changing LLMD's as I have become so very unwell and may have to go back on IV but will opt for a PICC this time, me as a women the chest line seemed a little strange
I think this will give you great benefit and I wish I had stayed on it as I only did 5 months as my line became inflammed NHS refused to treat me any further - To this day they will not give any support so all is funded privatly.
I think it depends how long you will ned to stay on the IV, but give it time.
The very best of luck and I think you have made the correct decision.
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