posted
I've been in treatment for 14 months now. the last four months i've been doing IV rocephin. I have no improvements to report and am actually feeling much worse than when i started treatment.
I am with a new LLMD. The last one i was with had a great reputation, but when an opening opened in my current LLMDs practice i jumped on it as I've heard such wonderful things about him.
I had my consult about a month ago and he tested for many other things as he thinks any progress is being impeded by other factors (yet to be diagnosed). I have yet to find out results (will find out in two weeks).
I see his practice again in three weeks. When I first met him and his PA they both felt that maybe rocephin wasn't the drug of choice for me given the fact that i'd seen no improvement whatsoever.
I am about to run out. I called and they said I could continue on for two more weeks until I see him at my next appointment if i felt that i was benefiting from it.
I am not sure what to do. I would just continue on if it was not so expensive. would two weeks make a difference or should i just stop.
my question to anyone who's been on IV rocephin is did you go four months with no signs of improvment, i.e. did you make strides after many months on it?
thanks for your help.
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Laura, I think that you should continue the Rocephin until you have another med to switch to.
I was on IV Rocephin 2g daily for about 4-5mo before I could look back and see clear improvements. The progress was so slow and gradual that I didn't really notice it at first.
Then my PICC line broke, I was off the Rocephin 3-4 days before I began to feel worse. It took 10days for me to get another line and restart my medication. By that time I had fully relapsed. I was sicker than I was before IV. I'm still trying to catch up.
To be fair, stress probably played a big role in my relapse. I was working too much and pushing myself more each day. I also have multiple active coinfections and my Babesia symptoms were out of control at that time.
So, Laura I'm not saying that this will happen to you but I want you to be aware. Have a plan to transition off the Rocephin and onto another med. Whatever you do, don't just stop the Rocephin.
Hopefully your new doctor will be able to give you a fresh start on the road to recovery.
Good luck Posts: 5237 | From here | Registered: Nov 2007
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posted
thanks for the info. i should mention that i am also on biaxin (four days on), tindamax (the thee days that i am not taking biaxin)and mepron.
given that do you still think i should stay on it?
how long were you on the rocephin in all and do you feel it helped? i have heard it can take a long time. what you say makes sense. it's just two weeks so maybe i should just suck it up. my insurance has been paying, but now that it's a new year a new deductible starts so mostly i'll have to pay out of pocket for those two weeks.
i wish money wasn't ever a deciding factor in health decisions, but as i'm sure you all know, getting treated, even with a pretty good insurance plan, is NOT cheap.
thanks again.
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
sammy,
I think you felt worse for those 3 or 4 days because your body was adjusting to NOT having rocephin in the system.
Lyme could not have attacked you that fast. Co infections maybe... but Lyme would probably take weeks before showing up again.
I would tell people to not get so discouraged when they first stop abx's. There's bound to be a detox process your body has to go through. Which might mean flu-like symptoms, etc.
W can't be on abx's forever.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I had been on Rocephin for 6mo. It's now been 4mo since I restarted it and changed the supporting oral meds.
Laura, if you really want to give the Rocephin a break, maybe ask your doctor for a different Lyme drug like Doxy, Amoxil, Ceftin, etc. I'm not sure if Biaxin and Tinda alone will cover you like the Rocephin has.
Another thing to consider, if you switch drugs, even from IV to something oral, you may experience a herx and feel worse for awhile too.
It's a hard decision. Especially when treatments are so expensive. And you never really know what will be the best for you until you try it.
Posts: 5237 | From here | Registered: Nov 2007
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There are lots of other IV drugs that could be rotated in: IV Flagyl, IV doxy, IV clindamycin, IV Zithromax.
My husband made great progress on IV Flagyl (this was after about four months of IV Rocephin).
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
thanks for the input. I am not sure if my new doctor will stick with the picc line for med delivery. i really hope he does as the swallowing of all the pills i already take is overwhelming and i feel like having the meds go right into my blood stream would be more effective.
he did mention levaquin (for the bartonella) as well as biaxin shots if the rocephin didn't start to show itself useful.
has anyone ever been on orals, IV and IM meds all at once?
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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How long was your husband on IV Flagyl? Was he on other medicines while on IV Flagyl?
Posts: 86 | From California | Registered: Oct 2009
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posted
laura- I am from NH and was on Rocephin for a total of 9 months..6 and then I had a gallbladder attack and had to have it out.
Then had another picc put in and was on another 3. I never had much in the way of response. I was also on oral meds at the time.
I now have chronic yeast from especially the Rocephin so make sure your are taking heavy duty probiotics.
I was seeing a LLMD in NY and he did say that usually you will notice a difference in 3-4 months even if it is a small change.
I was also on IM at one time along with oral meds. They put me on IM when I had to have the first picc pulled.
It is just my opinion but if you haven't had significant response by now then it is unlikely the Rocephin is a good match for you.
My LLMD is not really a big fan of Rocephin but really likes Bicillin. He feels it is just as good if not better....
I just want to add my Igenex was not even close to a positive so maybe I actually didn't have Lyme so that is why it never worked. I was in treatment for 30 months.
I know it is very difficult to make decisions regarding treatments...it was very hard for me to decide to have my second picc pulled because that meant failure to me. But I did the best thing for me and am extremely happy with my decision.
You just have to go with your instict and do what you think is best..sometimes the doctor doesn't know but you know your own body and how it is responding to the treatments...
Good luck and I hope you make progress soon...
Posts: 343 | From North Carolina | Registered: Oct 2008
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That makes sense about your theory on the rocephin. they believe that it may not be the right med for me given the lack of progress and that is when the mention of IM bicillin came up. they wanted to give it one last chance, but given the lack of response still, i'm thinking they will say it's not the right med for me and move on.
my concern is they pull the line. i hope i can have new meds through the line. i know they want to put me on levaquin next. i believe that can be taking through a PICC.
thanks for the input. you say you were seeing a LLMD in NY. do you no longer see him because you've found another doc or because you are better?
would you share who your NY doc was? my LLMD is in NY as well.
thanks!
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
This is my third time on IV rocephin 3GR. The first time was the first I was diagnosed, it was about 9 mos. The last time was about 2 mos and now I just re-started last week. It did it for me, I have bartonella also and am doing iv zithro. It's hard to advise, but if you see any improvement, keep on goin. It's hard to tell if it's a herx, the disease itself,hormones, side effects of the drug - I hope you see improvement soon - good luck..
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I was seeing Dr. H in New York. I discontinued treatment because I had been in it for 30 months with no real results...
I only had bad 41 present. They would have kept treating me but I chose not to. They recommended that I see an endocrinologist.
I had just had enough with not really feeling any better. They were wonderful though but I just didn't get well....they wanted to try IV Zithro but my line went bad before then and I had to have it pulled. I wasn't going to do it anyway.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Laura - I infused Rocephin, 4 G per day, for 6 weeks and saw no improvement...only worsening of symptoms. Then, I had an allergic reaction one night to the Rocephin and my LLMD switched me to Invanz, 1 G per day. I've been on it for 4 weeks and I'm seeing major improvement. The Invanz targets Bartonella and gets a little bit of Lyme.
I don't have any positive tests to go by, so for me and my LLMD, it's "let's see if this works". I'm infusing Invanz for another month. My LLMD mentioned Levaquin for me next.
Hope this helps you some.
Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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posted
HI Kim, i'm sorry to hear that after that long you saw no progress. i'm at my 14 month mark and have seen none and now see your former doctor. i hold out high hopes for him. i'm so sorry to hear that you didn't get results there.
are you on any ABX now?
Kim in DC, i have not even heard for Invanz. Is this a new drug in the lyme world? that's fantastic you are seeing progess on that med. i have bartonella and lyme (and babesia) so that drug sounds pretty interesting.
thanks
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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