posted
Not doing great on oral meds - wondering about IV abx as a possibility, my doctor is open to it. I'd like to hear thoughts about this - it's a toss up to me right now. I desperately want to feel better but am honestly frightened a little at the prospect of a picc line and iv abx.
Heard some who saw tremendous improvement with IV Rocephin but also some scary info about gall bladder issues too. Trying to weigh the pros and cons.
Hoping someone can give me some feedback both ways. Maybe there is another combo I can try orally. I have Lyme, Bart and Babesia.
I started out treating Lyme and Co in September of 2009. All of my symptoms are associated with neuro lyme. I've been on the following combo's with limited success.
Mino, Zith, Rifampin Factive, Tindamax (felt good but had allergic reaction) Currently - Bactrim, Biaxin, Welchol, Mepron
I have gone backwards in the last month on this latest combo and honestly don't feel like I've made a whole lot of progress since the beginning.
Thoughts?
Posts: 239 | From Virginia | Registered: Jun 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Aimee, the LymeMD talks a lot about treatment options in his latest post:
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have been on orals 3.5 years. Lyme is a slow process, like my doctor says "a marathon, not a sprint".
I just don't know. I do know IV is not a guarantee of wellness. I wanted IV for a long time and then when my LLMD said ok, I backed off because he also said in his experience orals vs IV doesn't make a lot of difference. He said Bicillin IM injections are as good as IV and safer.
Another LLMd told me orals are as good as IV.
I am on the W. Coast though..and LLMd's on the E. Coast treat fairly quickly w/IV. I think the E. Coast doctor's have excellent experience and really know how to treat everything that can be involved.
You have only been in a treatment a few months. Maybe you should get a 2nd opinion from an LLMd. Rocephin can make people feel better, some relapse very quickly when it is stopped. Co-infections have to be considered and it is MUCH more complex than you might think to treat it all effectively.
posted
If you have only been treating since September then you are really racing though the meds. Some docs probably do not switch meds frequently enough, but in reality both bartonella and babesia will require a minimum of 4 - 6 months of treatment.
Maybe you stopped the Rifampin so you could take Mepron, but it is very very difficult to treat all 3 infections at the same time. I guess you need to decide which is worse -- the bart or the babs and stick with treatment for one or the other for probably 6 months while concurrently treating lyme.
Hubby has been treating bart for about 2 years now and I know many treat babs for a year or longer. It really makes it hard to know what to do.
You might want to add in some herbs and see if that helps.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I have neuro lyme as well, and my LLMD seems to believe that it can be treated orally. I also wanted to jump right to IV, but I've realized it's better to treat orally if I can.
I've been on Levaquin (joint issues), Biaxin (hives), minocycline (EXTREME vertigo). We have finally settled on the doxy, amox, rifampin combo. The doxy really made me feel better.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
posted
I felt great-normal some days-on IV Rocephin, and no gallbladder problems. Was on it for 28 days. But 2 days after my last dose, symptoms returned, although lessened. Maybe a longer course would have made a difference, but don't know.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
Thanks for all the replies - I am still very torn. My LLMD suggested IV Rocephin initially but I wanted to try orals first.
At this point I feel so lousy I wonder about giving the IV's a try.
What is the thinking about herxing on IV - is it infinitely worse? I am flattened about once a month with the orals and am worried what the IV might do in terms of herx reaction.
I'm so down about all this - I know so many have plowed ahead for years but honestly, I don't know how you do it. Feeling horrible day after day and trying to take care of 4 small children has taken it's toll. I feel like giving up. Maybe that is the Mepron talking, who knows.
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Aimee, read Springshowers thread on IV treatment. She many times stated it was far EASIER than orals and more improvement. Different herx types.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I have neuro lyme, too. My LLMD, a well known doc who has treated more than 2000 patients, says that IV will be his last resort. It is a big deal.
So I am getting the Bicillin shots and they do seem to be helping. But it takes time. He said to allow at least 6 months on them before improvement.
I have had a port for IV's in the past. It is a big deal because of the risk of infection. I am really hoping I do well on the shots and will not need to go to the IV's.
I agree with Bea. You need to stick with a protocol for awhile. Patience is so hard when you feel so lousy...believe me, I know how you feel!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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