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concernedsdmama

Help, exacerbation of symptoms after starting Azithromycin

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Hello,

I am very new to the group, my 15 yr. old daughter has been newly diagnosed with PANS after doing the Cunningham Panel along with clinical symptoms. I will share her story another time but I need advice from others; She has been experiencing symptoms for nearly 3 years. I recently found a neurologist that took her symptoms serioiusly and after doing the cunningham panel she immediately started her on Azithromycin 500mg. 1 time per day. A few hours before she started the antibiotic she started to not feel well after starting the antibiotic now 10 days she has progressively gotten worse. She developed a sore throat,We tested for strep and it was negative) has been very weak, unable to stand for more than a few minutes, difficulty with walking, now anxiety, fear, bad thoughts, insomnia starting which for the most part has been handled due to dietary changes and supplements.

 

I have a call in to the neurologist but need advice from others that have gone through this. Is it expected to have exacerbation of all previous symptoms before the healing begins from the antibiotic or is this a bad reaction to this antibiotic. I have seen that it may be better to use Augmentin or Amoxicillin. as a first line.

Any suggestions or if anyone has used a Doctor in San Diego that they would recommend I would appreciate any input.

Thank you

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I feel that what you describe is likely to be die off and would not be too quick to change antibiotic. The dose/amount may actually be too low. Ask if you can do a trial of a double dose. You can use activated charcoal a couple of hours after giving the antibiotic to mop up the die off. See if it helps. Do you give Advil or Motrin? If not this would be a good idea, not tylenol.

Back when we started we started with Zithro at 250 (I think) and then went up to 500 for a week then back down to 250 and stayed there unless there was a flare -- this was for my daughter, my son was always on Augmentin Double or triple dose for years. Both kids are done after many hears of treatments. Doses can be different.

Suggest you find a MAPS doctor ASAP. Typical doctors dont have the clinical experience that the MAPS doctors have -- the maps doctors tend to tend to have more supportive protocols. You may have to travel.

xo, hope it helps. Lmk if you need more help.

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Agree it could be die-off (Herxheimer reaction) w/Azithro. We also use activated charcoal (1-4 caps 4x/hour for first 1-2 hours) and ibuprofen, as @emst mentions.

Also, make sure she's on a good/tested probiotic (we use Florastor WITH the abx, and a night chaser dose of Klaire De-tox).

Hang in there.

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Hello,

If this reply is a duplicate I apologize . I am so happy I found this sight and thank you for the feedback, I hadn't heard of the Herxheimer reaction until yesterday but I do believe that's what happened. Yesterday my girl could barely walk and tonight was leaping around...... She is taking Curcumin and high dosage of fish oil for inflammation and Ther biotic Complete by Klaire, I saw on the website the detox one and will get that next time.

 

One question about Charcoal capsules, do you take following antibiotic and what is a good brand?

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We use Nature's Way Activated Charcoal, but other brands are probably fine. We only use it if there's a "flare," in dosing I mentioned previously, not regularly, so not sure re. timing w/abx.

Azithromycin is broad spectrum so will get lyme microbials then the herx/die-off. Augmentin does not go after lyme, so no herx/die-off with it, thus it's the first line for PANS/PANDAS (to go after the strep or other bacterial infections), is my understanding.

We just added Azithromycin a few months ago, after 1.5 yrs. on Augmentin (still on), but I haven't really seen a herx reaction w/ds16.

Also, our practitioner said Klaire Complete contains strep, though inactivated, so Detox is preferrable.

Edited by tj21

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