IV abx questions

[jason80]

For those of you that are on or have been on IV abx for Lyme treatment, that are being treated by an LLMD (i.e., you tested negatively by CDC) I would like to hear your experiences.

Did any of you skip oral treatment and go straight to IV? My LLMD thinks that I have neuroLyme but wants to start with oral trial, but I'm thinking it makes more sense for me to go straight to IV, if I do this at all. Although I haven't given this too much thought, IV has an appeal that I am more likely to know whether treatment is really working.

Logistics: What type of abx did you use? Where did you go for treatment? How long was the IV treatment (days) and how frequently do you need to get an injection?  Thanks

[SOONERMOM]

I  don't remember him giving any explanations for why??  There is nothing "wrong" with choosing IV first.  Sometimes I second guess my own decision, since I had some kind of neuro "flare" in January.  I did a brief stint with IM Claforan, but had a bad reaction to it.  That is where my risk vs benefit  statement comes from.  There is a definite risk for letting this infection go on and on too, as we all know.

My comment about "if I was in a wheelchair or having trouble walking" comes from a friend of mine who is actually in that situation and didn't want to do IV's right away.  She hasn't seen any improvement with orals and is afraid to do IV's.  I don't want it to seem like I am saying that you have to be in a wheelchair to do IV's, because that isn't the case at all.  I know Amyloo is doing rocephin IV right now, maybe she will chime in.

[jason80]

Did your LLMD give any reasoning behind the comment of experience. My LLMD commented that basically IV abx was reasonable/recommended if it werent for any counter risk (at least in my case since neuro Lyme was suggested)

Back to the original question, has anybody on this forum been on IV abx? I thought it might be a small fraction, but I didn't expect it to be zero, which appears to be the case since no one has responded.

[wonko]

Thanks for sharing that your doctor states that IV tx can be more effective in patients who start out on orals.

I don't think that IV is necessarily the answer for me, it's more so that I feel I've been on the orals for long enough, with enough residual symptoms, to question their efficacy in my case.  But if could just be a "grass is greener" situation.  I do think it would have been difficult for me to commit to IV tx before trying orals, as I grew more confident in my diagnosis after my response to oral antibiotics.    

[SOONERMOM]

At my first LLMD appointment, he told me that I would qualify for IV tx.  I was doing so well on doxycycline that we both decided to continue with what was working.  He also told me that in his experience, that people that did the best on IV had first started out with orals.

I guess if I was in a wheelchair or having difficulty walking, I would have gone straight for the IV's.  Since there are more risks associated with IV tx, you have to weigh risk vs benefit.  

[wonko]

I've only taken orals.  I plan on asking questions about IV at my next appointment.  On the one hand, I think it would be expensive, and with more potential complications.  On the other, I wonder if it would allow for a faster, more complete recovery?  

I have obvious neuro involvement, for which I have read that IV Rocephin is considered the standard treatment.  I wonder if/how the fact that I'm not CDC positive and only treated through an LLMD influences my treatment options.

[ChrisD07]

I tested negative by CDC standards and I have neuroLyme.  My LLMD wants me to try 2 months of Doxy before the IVs.  He wants to see how the much the oral helps and then get a little more aggressive depending on how I feel.

[jason80]

bump