Some physicians use IV for multi-system involvement which you seem to have had. It's up to the doctor but if you are 80-90% better then your treatment seems like it worked.
Jason80,
MedHelp's computer popped up a post from you from July last year: "My understanding is that IV antibiotics are necessary if Lyme is affecting the brain (oral antibiotics can't penetrate the brain barrier). It seems that folks even in this stage category oftentimes begin with oral antibiotics and then migrate to IV antibiotics, why not start there? Confused..."
I have neuroLyme, had a SPECT scan 2 years ago showing 'moderately severe encephalopathy' and I was a mess. I also had Babesia, which I am supposedly cured of, but have had trouble with medication tolerance and so have been on and off ORAL abx for 1 1/2 years+. Despite my neuro involvement, my LLMD has never suggested IV abx, and even tho I had had Lyme well over a year before I started abx and have been off and on abx for almost 2 years, my neuro functioning feels 80-90% of normal -- but the babesiosis was a big part of my early misery, who knows how much was Lyme.
So for me at least, IV hasn't been necessary to treat neuroLyme. It's my impression that IV is used for intractable cases, but I don't have any literature to back that up.
Thanks for responding. Jason I am thinking that you are correct in saying that after several months of orals and no improvement my LLMD would have started considering IV's. I see her in two weeks I will ask her my posted question. Hope, you bring up an interesting thought. After having lyme we are for ever changed in regards to how we view an ache, pain or odd sensation. What we use to just ignore and move on we will now always wonder is it lyme again.
I would like to know too for the same reason. My LLMD said that they usually feel obligated to try oral first (even if you have symptoms from brain involvement) because of the risk of IVs.
If symptoms are serious and oral abx were not effective, then IV abx is appropriate. IIUC, the rules in Europe are more relaxed, and therefore, for the same symptoms/condition, going with IV abx from the start is more frequently prescribed.
No joint pain here. I am asking the same question myself, but I am a "chronic Lyme" sufferer. I don't have swelling of any joints, but I do have elbow pain (now). I'm not positive if that pain is from Lyme or my incessant typing, though:)
Since I'm wondering the same thing, you may want to check out (by googling) the American Academy of Neurology paper on "A Case Presentation on the Treatment and Coding of Nervous System Lyme Disease" and also Dr. Joe Burrascanno's "Diagnostic Hints and Treatment Guidelines for Lyme and other Tick-Borne Illnesses."
My first thought at your situation is that it is pretty severe, but it was caught early, apparently. Supposedly, if caught early, treatment with oral antibiotics will suffice. BUT, your symptoms being so severe, may have made me push toward IV abx? The best advice would be from an LLMD and hopefully you could get an opinion from one.
Take care and I hope you stay at your 80-90% level!