I'm due to get a PICC and receive IV Rocephin. Any special things I should know about the PICC? Or Rocephin? I'm supposed to get abx 4x a week, in the doctor's office. It seems like a lot - is that normal? Also, I notice that some of you talk about getting the abx at home. Is that pretty typical?
I noticed through posts here that after months of IV abx, you go on oral abx. When does it all end? How do you know when it's time to stop?
Okay, so you've been treated for Lyme and coinfections and you're done...for how long? There is no cure, so do you wait until you start to have symptoms again - and you do it all over again?
I guess what I wondering is...what is "normal?" How does all of this work? There are so many stories and so many different treatments and things to watch out for, but I would just like a basic idea, a map of how, in general, this is supposed to go for the rest of my life.
Thanks for your help.
Lori
Posted by bettyg (Member # 6147) on :
hi lori,
i just sent you my 56 pages of newbie links, advise, symptoms, igenex tests, ssdi disability, etc.
rocephin ... read top feature about that; lots of advise in there for all patients.
there are no easy guidelines; each one of us is unique and have NO IDEA how long this lyme journey will take.
i've been in lyme treatment 3 years; misdiagnosed for 34 years; so it will take a long time for progress and hopefully REMISSION.
skim thru what i have sent you; different options of treatments i believe are shown there ...
1 treatment doesn't fit all; can be combinations of many things; it's trial and error.
knowledge is power, so read, read, and read.
Posted by Beverly (Member # 1271) on :
Hi Lori,
It will be okay, just take one step at a time. And as Betty said...read read read.
I have been sick my whole life and in treatment for the last 6 years, but I have a life now. I feel better today than I ever have.
Hang in there... Posted by erleichda (Member # 11482) on :
Thank you both. I have been reading, like crazy. There's so much information that I have to know. Thanks again for the help.
Posted by bettyg (Member # 6147) on :
it's not easy; conflicts on so many things!!
which type of treatment,
camp a...IDSA....the bad guys
camp b...ILAD...the good guys
Posted by erleichda (Member # 11482) on :
I DO know the good guys and bad guys!!!
Posted by Lymetoo (Member # 743) on :
***I noticed through posts here that after months of IV abx, you go on oral abx. When does it all end? How do you know when it's time to stop? ***
When your symptoms are completely gone for at least 2 months, then it's safe to stop the meds. If you do not follow up the IV with orals you will relapse.
My LLMD follows up at the end with several rounds of heavy dose flagyl to make sure it's OK to go off abx.
That's another thing...While on Rocephin or immediately afterward, you need to be on flagyl or tindimax....something to kill the cysts.
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