For those who have used Zithromax for lyme....

[Dedee]

What other antibiotics have you combined with the Zithromax to treat lyme and / or coinfections. We recently stopped my daughters septra because she was reacting so badly to it. She remained on the Amoxicillin. The LLMD told me to change to Zithromax and Rifampin. She said to start with the Zith first and after a week or two if she wasn't showing any herx reaction to add the Rifampin in. So I started the Zith this week but didn't stop the Amoxicillin yet. Hmm, I know I was supposed to but I just wanted to see what would happen. Started the Zith on Monday. She had one rage episode on Tuesday evening. The rest of the week has been uneventful (knock on wood). She isn't perfect, still struggles with taking her medicine and has some OCD and sensory issues but she isn't crying, raging and defient like the last few months have been. In the past Zith alone was not very helpful for her. So I am just wondering what others experience has been for Zith treating Lyme or bartonella. Our LLMD thinks she may possibly have babesia also. What seems to be the best combo drug with Zith? Appreciate any insight here. We are so due some peace in our home.

 

Dedee

Edited April 21, 2013 by Dedee

[LNN]

We have done zith+augmentin - not much bang for the buck

zith+augmentin+bactrim - great

zith+omnicef - major herx, then goodness

zith+rifampin - very good (was after the worst was over, so not as wow factor b/c he was much better by this time)

 

zith doesn't do much for DS to protect him from Pandas flares and not much for lyme by itself. But it's been our mainstay for 2.5 yrs. Others have been rotated but since DS is too young for doxy, zith has been the one constant the LLMD has wanted to use. We did the same thing - zith for 2 weeks then added the second abx.

[sf_mom]

If she is handling combo of Azith/Amoxicillan well and you have noticed improvement I would stick with it! I have found our LLMDs very receptive to what is working even if they didn't make the decision.

 

If you feel things have settled with that particular combo and you want to push for further gains you might talk with your Dr. about adding the rifampin in 'slowly' to Azith/Amox.

 

That specific combo (azithro, rifampin, amox) really helped our kids with bartonella. Older DS recently dropped amoxicillin for Augmentin XR. We worked up slowly and once his herx settled (4 weeks) he is trending better than ever.

[Hopeny]

As far as I recall from Burrascano guidelines Zith on its own does nothing for Lyme. That said, DD had seemed to be doing quite well on Zith/Rifampin combo. She still had Bart symptoms (foot sole pain, numbness, eye issues) so we decided to up her dose but otherwise I basically have my kid back- she was on 75 mg Rifmapin 2x/.day. She is 9/75 pounds. I added 50 extra MG of Rifampin yesterday to ramp up to her new dose which is double the current (she had no idea I was doing so) and woke me up at 5 am today saying she had a headache and leg pain, had leg pain all day and missed school. Essentially a herx even after a year of abx and 5 months of this combo. I am not good at tracking symptoms but I don't think she has had leg pain since January, no headaches since maybe early 2012 when she started treatment. Sorry to be a downer but I was extremely disappointed today that clearly she still has a lot of Lyme/Bart going on. I am told Rifampin/Doxy is the preferred combo for Lyme/Bart but she refuses to take Doxy (suspension) because of the taste. I know others have had good results with Zith/Rifmapin and before today I probably would be more keen on the Zith part. my 3 yo has been on zith/cefdinir for several months and we are now switching to Bactrim/zith. On the positive side though kids barely got sick all winter! IMO its worth a shot, I am going to keep plowing through and hope the higher dose Rifampin is helpful

[Dedee]

Well, she had several good days and then yesterday it all went to h*** in a handbasket. She had a major raging episode which ended up with the police at our house. Have to say that was a first ever. She was so furious when I took away her ipod and made her stay in her room because of her violent rage that she called 911 and then hung up right away. When they called back I answered the phone and told them exactly what happened....that I had a 9 year old who was having a tantrum and thought she had the meanest Mommy in the world so she called 911. Told them they were welcome to come out if they wanted so they did. Needless to say my daughter was horrified when they showed up. I told her since she called them she had to talk to them. Over all it was a good lesson for her. Just a little embarrasing from a neighborhood perspective. Anyway, I guess she is having some herxing after all. Guess we will just wait this out and see how things look in another week. Tomorrow will be end of first week so maybe things will start to get better in a few days. Appreciate everyone's input!

 

Dedee

Edited April 21, 2013 by Dedee

[momcap]

I know it's different for everyone but this is what we saw with DS when we treated lyme/bart:

 

Amox alone (for strep) = improved, but could not sustain improvements

Zith alone (for strep) = no change

Amox + Zith (for strep and lyme) = manageable herx cycles with marked improvements between

Amox + Zith (lyme) + Plaquenil (for cyst-form of lyme) = AMAZING night and day difference, HUGE improvements!

Amox + Zith + Plaquenil (lyme) + Bactrim (for bartonella) = nightmare non-stop rages

Amox + Zith + Plaquenil (lyme) + Rifampin (bart) = brutal herxes followed by amazing improvements - he was almost 100% between herxes

[Hopeny]

Dedee I love how you handled that with the police! If its helpful I wanted to add that my DD initially did well with Amox. Then the dose was upped and timing increased to 3x per day which is the standard Lyme literate dose/frequency. DD literally started to go crazy. She told me she was afraid clothes were hurting her. And the world was a dark and dangerous place and she could not leave my side. etc. While I was desperate to have her on abx I was afraid I would have to hospitalize her so I pulled her off. A five day course of doxy brought her back from the brink. While Augmentin/Biaxin in combo seemed to help greatly, I can't see a day when I would use Amox again. In regards to the rages the Rifampin seems to have really helped that.

[philamom]

For DD, we used zith, amox, and minocin to treat lyme/bart. A year prior (during a bad PANDAS flair) we tried 14 days of zith, but it made her OCD really, really bad so we stopped it.