My daughter is on IV claforan, was on Rocephin for 3 months but developed galltones, and I was wondering how long people have been on IV medicine and when do you know to just get off and stay on oral abx. Not only is she on IV, but she is also on Mepron/Zith too.
My daughter went undiagnosed for 11 years. She had to go off the medicine for 5 days for liver problems and when she went back on, she had bad herxes. She does not want to get off IV; she feels it is keeping her alive.
I believe she will be on abx for a long time, but my question is when do you know to get off IV and just be on oral abx? I have heard you can relapse after getting off IV.
I would appreciate someones input who has been on IV.
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I went from IV to IM shots, and having great success. I understand your daughter's anxiety about stopping the IV. I always thought the lyme would return right away when treatment was over, but I actually was able to build my immune system up and feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
My mom has wondered the same thing about me! I went undiagnoised for 10 years and I was on orals for about a year and then started IV rocephin.
I actually already had gallstones and the rocephin I'm guessing just made them "come to life." After much debate I ended up having my gallblatter taken out and was put on IV claforan.
I really felt like the Rocephin helped me! I was able to function much more normally while doing my IV.
After my surgery I had an allergic reaction to the claforan and then my babesia became active and I went into a downward spiral VERY fast.
I lost my job, lost my insurance, and now I am just starting to get my life back.
Luckily, my moms insurance has picked me up (even though I am on med-leave from school). I want to get a job, but no one will hire me-but that's another story-
My LLMD put me on malarone 2 days a week, rocephin 4 days a week and 1 day off. My mom thinks this whole thing is just ridiculous and I am fine now-
She knows I am not 100% but she thinks that I can just stay on orals and I will be fine! I feel like IV therapy will really help me even more! She is so reluctant and doesn't understand how easy it is to relapse or worse think that u've killed it and it attacks me again in 3 years.
I want to be the BEST I can be-I NEVER want to go through this again-so even though it's SO expensive, I'd rather just stay on it-and deal with the side effects later.
My mom has a very different plan for me. She feels like she's seen me get better and better and better and now I should just be normal. But she doesn't get that I'm not better yet.
It's so hard to explain to her since she doesn't feel what I feel. I know I am not better, as much as I want to be.
My suggestion is to observe your daughter-does she really seem as "healthy" as her friends? Does she seem like she's doing better? Then why stop? When depressed people starts meds they often get better and stop them-and get depressed again-if it's working don't stop until you are certain you are done! Follow the ILIADS standard of care and listen to your LLMD.
-Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Thanks for your replies. Yes, I have heard wait two months to be clear from symptoms before stopping.
Her doctor is awesome. He is literally saving her life and he has not stated when but so far she is in her 4th month and is going until 6 months. Then he will see.
My daughter is 14, 9th grade. With all the teenage pressure, you would think she would love for that PICC line to be removed. But two days ago she said she wants her PICC line in forever. She realizes that is what brought her back to life. She could bearly move and was soooo depressed; it was not good. Now she is smiling, talking, going to school. She is smart; PICC---LIFE
I wouldn't want to have that removed either. But believe me she is not near the finish line at all. She is still having alot of symptoms.
Lindsay, thanks for your reply. What are your symptoms now? You still do not feel cured.
I know it hard for your Mom to relate, unlike me, I have lyme so I know what my daughter is going thru. My whole family has lyme. When someone is not doing well, which is often, or having a bad mood day, which is often, we can relate and calm each other down.
Hang in there. You know your own body. Listen to yourself.
Thanks,
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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