This is topic Question on neuro lyme treatment? in forum Medical Questions at LymeNet Flash.

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Posted by bv (Member # 9578) on :
I have neuro lyme (burning skin, muscle twitches, muscle jerks, floaters, flashing lights etc)> Been on doxy & a cyst buster for 8 months=doc switched me to ceftin in place of doxy. Doc does not think iv treatment necessary.

Here is the question. Everything i read says neuro lyme needs iv or intra musular rocephin to be cured. I am concerned I am missing a window of opportunity to treat the spirocheetes.

Please tell me if you have had iv treatment & was it helpful. How often (daily?). Thank you for your response.
Posted by savebabe (Member # 9847) on :
Both IM bicillin LA and IV doxy were very successful treatments for me.

The key is to combat the co-infections before treating the lyme with IV.
Posted by Bill ATL (Member # 7817) on : many different combos of Oral Abx have you tried? Did they help? Miminal reaction?

What is status/severity of your current health?

My LLMD would base his oral vs IV decision based mostly on current health state.

If in bad shape physically and bad cognitive, then IV may be warranted...but if you could function somewhat normal day to day, then he may want to try oral abx. Mine changed them after a periods of "no response" until we found one that made an impact...which happen to be Zithro and Mepron (with Artemisinin).

Most Drs base their Oral vs IV decisions based on your whole health picture....shying away from invasive (picc line or IV) procedures.

just my $0.02
Posted by davidx (Member # 8326) on :
This is a great question and one that I wrestle with myself. I dont think there is any hard and fast rule. I think people respond differently.

With that said, after a certain amount of time on orals, if your symptoms arent getting better then it is probably worth trying IV. This is sort of the conclusion that I am coming to. With that said, IV does not guarantee you'll get better...but hopefully it will help!

Posted by Visual Afterimage Man (Member # 10435) on :
I'm neuro lyme infected. 90% of my complaints are neuro related. I have been on orals for 5 months now.

Doxy and Omnicef. I have seen some improvement. I did ask my LLMD about IV and he said that it's not a necessary step for me at this point in treatment. People tend to herx harder on IV and can find themselves unable to work. He has seen people respond to orals and become cured (or remission whatever you want to call it) but just a a slower rate.

So here's how I see it.

IV = Bad Herx's, knocks you on your butt for months. Expensive and health insurance will only allow so many treatments before the bill becomes yours.

Orals = Less severe herx. Longer duration of treatment, but doesn't knock people on their butts as badly. Insurance doesn't complain as much because it's much cheaper.

If you don't respond to 12 months of Orals, then I would definatly ask the Dr to TRY the IV.

As for a window of opportunity.. I'm not sure that there is such a thing. If you are on abx then you are getting some benefit. I don't belive you have a certain amount of time to kill the Lyme before you become uncurable... Try to hang in there and don't put so much pressure on yourself.

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