I've only been on oral antibiotics for three months, but my LLMD is considering beginning me on IV treatment later this month. He has re-tested me for Lyme and all co-infections before officially making this decision.
When I first tested in March, I had a positive IgM from Igenex, but I had a negative IgG, but he said something about having a positive band on my IgM that's only specific to chronic Lyme. I'm confused.
I guess he's also thinking of IV because I have gastroparesis which can alter the absorption of medications.
When is it appropriate to start IV antibiotics? I feel like it's a last resort that I haven't gotten to yet. I feel like maybe I should continue on orals for awhile, but maybe different dosages or different combos.
I also know NOTHING about PICC lines and how they work, what to expect, etc...
Can anyone offer me some help?
Posted by merrygirl (Member # 12041) on :
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Posted by chamade (Member # 11472) on :
did you get any relief from orals?
Posted by ChrisBtheLymie (Member # 8916) on :
What oral antibiotics are you taking and at what dosage? Have you noticed ANYTHING different? good or bad? 3 month is still a bit early to tell IMO, I didn't notice any difference for about 5-6 months or so - but it depends how ill you are and what your bacterial load is, etc.
Posted by PBizzle (Member # 11463) on :
I've been taking 200mg of Doxycycline a day for 3 months, with a short 3 week period in between of Amoxicillin/Zith. I seemed to backslide on that combo, so we decided to go back to the Doxy.
Just recently, I added 500mg of Flagyl twice a day but only for 20 days. I did well on that, but had a semi-explosive herx by the third day. Other than my breathing issues, I feel much better after the Flagyl herx.
I do feel like I'm doing better with oral antibiotics. A lot of my symptoms are either disappearing or improving, but some symptoms are showing their ugly faces more than ever like...
- back/neck/shoulder pain - fatigue - anxiety (like mega panic attacks 24/7) - air hunger/breathing problems of all types - some head pain but not intense like it was - lots of bruising but I'm also anemic - GI distress
So, if I can just get these things under control, then maybe I'm home free.
Posted by lorima (Member # 11925) on :
I agree with the previous post, seems too soon to resort to IV, unless there's some reason for it we don't know, aside from the fact that you aren't better yet.
200 mg/day is not enough doxy - need at least 400 mg/day,preferably up to 600 mg, if you can tolerate it. I've gathered from extensive literature. Otherwise it doesn't reach a high enough concentration in the CSF (cerebral/spinal fluid, ie. brain), and you have neuro symptoms.
I'm taking 400 mg (200 mg twice a day), with food, but at least 2 hours away from calcium, magnesium, antacids of the Maalox type (aluminum), or dairy products (too much calcium).These minerals decrease absorption of doxy by as much as 80-90%, so avoid "co-eating" them with doxy.
I'm expecting to switch antibiotics and add a cyst-buster after 3 or 4 months of the doxy.
If I take the doxy on an empty stomach it makes me nauseated, but if with food I'm fine. Same for my husband. VERY sun-sensitive - I completely cover from head to toe when I go out.
If you can, get an LLMD - I don't think a knowledgable LLMD would prescribe only 200 mg/day of doxy and expect it to affect neuro-Lyme, again, unless there's something about your case we don't know.
Good luck!! Lorima
Posted by lorima (Member # 11925) on :
Oops, regarding the post I just sent, I just reread your original post and saw that you are already seeing an LLMD.
Maybe the IV recommendation is due to the gastroparesis (I'm a molecular biologist, not an MD, and I don't know anything about gastroparesis). But I'm still puzzled by the low dose of doxy.
I am going to avoid IV as long as I can, forever I hope - I think the usual problem is that the Bb is encysted or otherwise invulnerable to Abx, and I don't see how IV versus oral administration makes any difference regarding that problem. In my admittedly limited understanding, the advantage of IV is that (1) it's fast, and (2) some drugs and some people aren't compatible with orals.
If it comes down to that, I'll do it, but I'll try everything else first. However, I don't know all the details, and I guess I should get educated on why so many docs (and even some ducks) go the IV route - must be a plausible reason.
If anyone knows what these reasons are, please post them, and forgive me my current ignorance on the subject.