saw my LLMD today

Saw my LLMD today and also received the results from my urine test from IGeneX.  Two out of three urine samples were positive for the Lyme bacteria.  My doc prescribed omnicef about two weeks ago and as of yesterday, I started feeling awful again.  He thinks its a herx.  I've been on multiple abx for about 9 months.  Anyway, he also started me on Flagyl today along with the omnicef.  He said to start the Flagyl once the herx is over.  He said if the Flagyl doesn't work then he will start IV abx.  I'm a wreck.  I'm frustrated that 9 months into lyme treatment I only have good days every so often and am not seeing any long term results.  I'm scared to death to start flagyl hearing how terrible the herxing can be.  My lyme has mostly attacked my nervous system making it feel like a misfiring mess.  I have tons of numbness and tingling and my legs feel like they are covered in icy hot.  Many, many other symtpoms as well.  I've also read that Flagyl can cause more neurological symptoms which worries me.  Any advice from others on this med would be helpful.  I could use any feedback I can get.  Do others out there ever get their life back after this illness.  I'm feeling like I never will.  Thanks!

[Marinella82]

I had a bad case of lyme and finaly saw a LLMD who put me on Tetracycline and I felt worst before I got better.  My Herx was so bad I called the doctor and complained and accused her of making me more sick.  She told me "good the medicine is working, don't stop it, if you want to have your life back keep taking it"  So I listened to her and I am glad I did cause a few weeks later I was feeling better.  Stick to it.  It will get better.  I had lyme for a year and a half before I went to a LLMD and it was the best thing that ever happend to me.  4 months of antibiotics and I am back to my old self again.  Be patient and don't be affraid of getting worst cause things will get better.  I am living proof.  There is life after lyme but to get better you need to almost feel like you are going to dye to get there.

[JackieCalifornia]

I was on Flagyl for a number of months, and it wasn't any worse than anything else.  It works.  Be brave!

[ally123582]

Jackie- did you start gradually until you worked up to a normal dose?  Also, did it create more neurological symptoms for you?  I read that it can cause neuro symptoms to flare, which is worrisome since that is pretty much the majority of my symptoms.  Thanks.

[JackieCalifornia]

Different docs take different approaches, but my doc gave me only oral antibiotics (no IV), and started at full dose.  First I was treated for babesia with two particular antibiotics, then after about 4 (?) months, switched over to two other antibiotics to treat the Lyme.

I did not get bad Herxes, and usually I overreact to ANY thing.  I don't even drink alcohol because it just knocks me out, and I can't do coffee either.  So you'd think if anybody would get Herxes, it would be me, but I was fine, never felt any worse than I did just from the illness itself.  I had a lot of neuro symptoms, too, and it made it hard to think and reason, but the symptoms did not get noticeably worse when I was on the meds..

Everybody is different, but don't be afraid of the side effects -- if you get any, you'll deal with it, maybe by calling your doc's office if you feel really bad, and maybe the doc would make changes or adjustments to your meds.  That's what the doc is there for, so don't be afraid to call him/her.

I was really scared of the side effects of the meds, and I waited to start taking them simply out of fear.  Partly that's because Lyme etc. causes anxiety, so on top of being sick, I was anxious also because of the sickness, and all of that makes thinking clearly really hard.

If that happens to you, know that you are not the only one who has been through it.  Use your judgment tho, if the side effects seem overwhelming -- sometimes the bacteria die-off releases more gunk into your system than it can easily handle, and your doc may tell you to back off the meds to a lower dose or for a few days.

It's important tho for your doc to make that call, since going on and off and on and off antibiotics can reduce the meds' ability to kill the bacteria.  Even if you have bad die-off reactions early in treatment, I'm guessing that will lessen each time you have a die-off.

You can do this!  Don't be afraid.  The important thing is to get well.  Hang on!