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My dd11 has just stopped Biaxin and now starting Alinia. We had to order this from Canada Pharmacy since we can't it here in US (which makes me nervous). My dd is also taking Septra and will continue it while on Alinia. Can anyone share their experience with this abx? Any side effects or problems while taking it? We seem to be going from drug to drug just waiting for something to "work". Not sure of any of this any more. Not even sure there is infection. Any comments would be appreciated. Feeling defeated at the moment.

Thanks.

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My DS14 is taking Alinia for Babesia. I did get it here in the U.S. through CVS Pharmacy. When he first started taking it a few weeks ago, he experienced stomach upset. We stopped for a few days and started back up. We also added in 2 ginger root capsules at breakfast and dinner when he takes the Alinia. He has had no stomach issues since.

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We also got Alinia thru Canada (generic) for $95, since our insurance would only pay for 6 days worth. Did 2 weeks worth at the end of parasite protocol and then did 28 days 4 months later. Side effects were minimal (but he was on several natureopathic supplements which may have helped).

 

Doctor said it treats several things at once so really a great abx. I heard recently that the company that makes it is not longer making more of the name brand. Not sure about the generic version.

Edited by JuliaFaith
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My ds took Alinia toward the beginning of Lyme treatment, and we also were able to get it in the U.S., but our insurance covered it. He never had any problems/herxing on this medication. The only time we've seen obvious, troublesome herxing is with Cipro and then with Babesia treatment. We never saw a huge positive change, only slow change in small increments over a long period, so I could never point to one medicine or another as being responsible.

 

I'm sorry to hear you're feeling discouraged. How long has your dd been in treatment for Lyme/coinfections? You haven't seen any changes whatsoever?

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My ds took Alinia toward the beginning of Lyme treatment, and we also were able to get it in the U.S., but our insurance covered it. He never had any problems/herxing on this medication. The only time we've seen obvious, troublesome herxing is with Cipro and then with Babesia treatment. We never saw a huge positive change, only slow change in small increments over a long period, so I could never point to one medicine or another as being responsible.

 

I'm sorry to hear you're feeling discouraged. How long has your dd been in treatment for Lyme/coinfections? You haven't seen any changes whatsoever?

 

Thanks so much for the response. I am glad to hear that Alinia did not cause any problems with your ds. I am very discouraged but also know that we are only 6 months into treatment so need to be realistic. We started biaxin and mepron in December. We stopped mepron a month ago and switched to septra at that point along with the biaxxin. Now we are staying on septra and dropping biaxin for alinia - confused yet - me too. Anyway. There have been no real changes at all in these past months. There have been times when my dd's tics have gotten lower but they always seem to creep back up. This is her pattern and always has been. We had an IND babesia test and recently it went to NEG but still no significant change in tics. Yes, I am deeply discouraged. I worry that this is not the right treatment. I read of kids starting an abx and within days see a difference - that has never been us. I read a lot of things that have never been us. I suppose I have no other choice but to continue on. I hope your ds is doing well.

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I read of kids starting an abx and within days see a difference - that has never been us. I read a lot of things that have never been us. I suppose I have no other choice but to continue on. I hope your ds is doing well.

This sounds eerily like our story. As you see below, ds has been diagnosed with several issues. He also had HLA testing done per Dr. Shoemaker and we found out he is not genetically likely to recoup with Abx alone because of his genetic makeup. Also, mold illness has been an issue for him (and now probably my dh). We just did another ERMI test to make sure our house is healthy enough to continue living in after cleaning and doing a bit of remodeling. Waiting for results any day.

 

We were lucky enough to have found an ND who uses prescription/natureopathic/homeopathic protocols so abx has only been a small part of his treatment. Feel lucky we found this doctor before doing the genetic testing.

 

Keep looking, you will find/treat everything eventually and will be so happy that you were persistent in getting the help you need.

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Bartonella has been the cause of my daughters ticcing/PANS reactions. She started on septra for lyme but developed an allergic reaction to it so was switched to biaxin. It wasn't until rifampin was added to address bartonella that her tics started to subside. After 3 months of rifampin her ticcing was almost nil and behaviour had improved immensely, so the LLMD discontinued rifampin and tried to cover bartonella with A-Bart, leaving her on biaxin as her only antibiotic. Within 3 months ticcing and most other symptoms had returned so we resumed rifampin for bartonella. 3 months after that, ticcing is back to almost nil and behaviour has again improved. We will remain on biaxin/rifampin for the time being and start pulsing tindamax this week, although things have been so nice for a while and I hate to mix it up. We have never used Alinia or treated for babesia - it was neg through Igenex, while bart was positive.

Edited by rowingmom
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we have been on Alinia for 2 months now w/ Azith , tics aren't going away but decrease. It's a good drug I think. I am not sure if we have the " right" combo but when our LLMD gets back from Lyme confrence in San Diego this weekend I will ask about this.

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Bartonella has been the cause of my daughters ticcing/PANS reactions. She started on septra for lyme but developed an allergic reaction to it so was switched to biaxin. It wasn't until rifampin was added to address bartonella that her tics started to subside. After 3 months of rifampin her ticcing was almost nil and behaviour had improved immensely, so the LLMD discontinued rifampin and tried to cover bartonella with A-Bart, leaving her on biaxin as her only antibiotic. Within 3 months ticcing and most other symptoms had returned so we resumed rifampin for bartonella. 3 months after that, ticcing is back to almost nil and behaviour has again improved. We will remain on biaxin/rifampin for the time being and start pulsing tindamax this week, although things have been so nice for a while and I hate to mix it up. We have never used Alinia or treated for babesia - it was neg through Igenex, while bart was positive.

 

 

Interesting rowingmom, how did you come to understand Bart was the reason for tics? my son has been dx'd for Bart too and he's PANS as well.

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Interesting rowingmom, how did you come to understand Bart was the reason for tics? my son has been dx'd for Bart too and he's PANS as well.

 

Deleted my response and started another thread.

Edited by rowingmom
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