I have had lyme disease since 1996 with all positive blood tests. I also tested positive for babs and bartonella and I did 6 months of mepron/zith. I have been treated with orals since Feb. 2004 with some improvement but persistent neuro symptoms.

My LLMD would prescribe oral abx (including a cyst buster) to take with the IV abx and oral for follow-up after the 4-6 week course.

I can only share my experience. I had Lyme for a year before beginning oral treatment and then two years on orals before I hit a plateau.

My doc prescribed 4 to 8 weeks on IV Rocephin. 2 grams twice per day. I handled the first month just fine, so we went ahead with the 2nd. I could not have done more because my veins kept collapsing that 2nd month.

It did the trick for me and I followed it with 8 more months of orals before I was done. Oral Spectracef wiped up whatever was left for me.

I've been doing great since January. Thankful everyday of my life since then.

That was me...everyone is different. BUT yes, 4 to 6 weeks can really help. My LLMD wouldn't do more than two months anyway because he feared gallbladder problems.

I am going to ask about actigall. Is it a prescription?

I will be having an ultrasound done of the PICC line and of my gallbladder every 3 weeks while on the IV abx and bloodwork every week.

Hopefully I have all of the benefits and none of the negatives.

Peace and healing,
Annie

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I was thrown off when he said 4-6 weeks as well, but I think he's just a very cautious dr. I'm guessing he wants to see how you react to it first. I may be wrong though - everyone's different. Maybe you will only need a short time on it.

My advice: definitely do the cyst buster (I'm guessing he'll use tinidazole). I responded pretty well to that combo.

Unfortunately I got much worse when I went off it which is common....but I dont mean to scare you. I definitely dont regret doing the IV and I feel it did help a bit in the long run. Post-IV I had another brain MRI and two of my white lesions disapeared!

Although getting the ultrasounds every 3 wks gets pretty annoying, its VERY good that hes on top of the gallbladder stuff!! You'll probably get bloodwork every week as well. It all sounds overwhelming, but its not bad. I actually preferred it to orals.

Good luck! I hope this does the trick for you!

Thank you all for your well wishes and advice.

SunRa, yes, you know who I am seeing and yes, I agree, he is very careful and I feel very safe with him. I will be doing tinidazole and biaxin with the IV so hopefully that will help. I think that you are right, he is waiting to see how I do - I get the impression (after I posted this yesterday) that he isn't locked in to any plan and if my symptoms are improving (mainly my eyes) he won't just *stop* the IV but rather will keep going as needed.

I start tomorrow and I am actually really excited - maybe this will be "it". At least a little optimism won't hurt! I am going to do 3 days of infusions at the hospital to make sure I don't have a reaction and then the PICC line will go in on Thursday.

SunRa, I apologize for dropping off the face of the earth and not getting in touch with you - I have been pretty sick, you know how it goes... I hope that your move went well. Check your email soon!

Does that mean you have both been sx free so far?

I don't mean to but in but I am considering IV Rocephin and have done no abx so far (no positive test yet but Lyme and Babs sx for long time, some since 96').

Are you both still on orals?

Thanks!

I unfortunately relapsed slowly starting about 4 or 5 months after stopping the IVs (I stopped because my insurance company wouldn't cover any more). Since then I have continually slowly gone downhill and orals just don't seem to be able to make much of a difference. I am now at a point where my stomach is pretty messed up from all the medicine and I have trouble tolerating anything orally. I've been off all antibiotics since October because of this (I was on Rocephin again from July to October but had to stop because of complications and it didn't seem to be helping very much). I'm now attempting to start back on orals (Ketek and Omnicef) but so far it hasn't gone very well. My LLMD wants to order IVs but is afraid my insurance (a different company than the one that cut me off) won't cover them if they think I can tolerate orals. So, if I can't tolerate the orals he'll go ahead with the IV (Clindamyacin this time).

Sorry I can't be more helpful. I can say that for me the first round of IV Rocephin made a HUGE difference. And even though I relapsed after stopping it, I'm very glad I did it. I got 4 pretty good months out of it where I felt better than I had in a long time. I was able to live my life again. I wish I could get back there easily, but it looks like my treatment isn't very clear cut. I guess my LLMD will have to get creative!

Peace and healing,
Annie

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You took 6 mo of Mepron/Zith, which would be for Babs.