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Posted

Shae's having a very difficult time. The moods are starting to last 24/7. I haven't had much chance to read about Herxing yet. Is it possible that the Keflex she is on is causing her to Herx? She was on it for about 6 days prior to a 10 day dose of Omnicef (saw improvements on day 7) and then I started her back on it as soon as she finished the Omnicef. IDK, maybe I'm just grasping at straws here. She started on Keflex back in January and we took her off for a few weeks after the tube was placed. Raging was up and down until we took a break but then her anxiety was so high from the tube surgery that she just needed a break from everything stressful.

 

She was on Augmentin back in February I believe and she had terrible raging attacks until we stopped the meds. At the time I assumed it was because of the orange flavoring in the meds. Oranges are one of her suspected triggers for her EE disease. Too many XXXX diseases to keep track of. :(

Posted

I suppose any antibiotic can cause herxing, especially at the start of taking it. Are you tracking symptoms and how they coincide with different changes in medications, supplements, diet, etc.? I'm sorry I'm not very familiar with EE and the physical constraints of a feeding tube. Can she still swallow things or does everything enter thru the tube? Do you have any detox as part of your daily schedule? Due to Shae's sensitivities, you may need to work with a professional on developing a plan, but it's an area I'd look into. It makes a difference in our house, especially with the rages and brain fog.

Posted (edited)

She is completely no foods and meds are thru the tube as well. The purpose of the tube and elemental formula only diet is to get rid of the swelling and autoimmune reaction in her esophagus. Once the esophagus looks clean, we can start adding back 3-4 foods in only their purest form over a three month period and then she will have to be rescoped to make sure everything is still clean. And then we repeat. It's a long, slow process. Supplements, herbs, detox stuff will all have to go thru a trial period as well. If it turns out she does have Lyme's it is going to be a real challenge to manage meds, EE triggers/reactions, and herxing.

Edited by ShaesMom
Posted

just curious why she's not still on the omnicef if you were seeing improvements with that abx? why switch to keflex? i do believe they are in the same family - ?

 

i am admittedly the most poorly informed person here on abx. it does stand to reason that any one person could have any reaction to a particular abx.

 

just our story -- ds was first put on azith for 5 days. had a horrible reaction. many troublesome behaviors that had lessened returned with a vengenance. at the time, i thought it a bad reaction to azith -- although he'd been on it before in his life with no trouble -- i still don't believe i'd ever put him on it again. a month later, he was on kelfex for 30 days. in about 3 days, he had 100% remission. we later (about 1 yr) found lyme.

 

was that first reaction to azith a herx? why 100% remission even with lyme? i believe it was b/c lyme was 'underlying' and the behaviors we saw were due to a strep interaction. they keflex handled that but wasn't able to sustain pitand entirely. so many unknowns!!

 

i do believe there are some abx that are more commonly thought to bring a herx reaction with lyme. i don't believe keflex is one of them. but again, i am very uninformed about abx. it could be many different interactions that are bringing about what you are seeing.

 

how is she now later in the day? can you try epsom salt detox or sauna that you don't have to get into her by mouth?

Posted

just curious why she's not still on the omnicef if you were seeing improvements with that abx? why switch to keflex? i do believe they are in the same family - ?

 

 

Her Ped will prescribe Omnicef as a 10 day treatment dose only. Keflex is her Proabx. I'd love 30 days of Omnicef but the Ped won't go for it.

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