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After 7 months, 1 pedi, 5 specialists we have confirmation that my DD, 8 has PANDAS/PANS. I can breath for the 1st time in months and I can scream I am not CRAZY!!!

 

Now to the treatment... Or PANDAS dr tested the whole family. My husband is positive for strep. My PANDAS daughter, myself, and two boys are either active or past for Myco P. So that seems like our main Nemisis. I am at the pharmacy waiting on Zithromax. But would love to hear your stories and how you dealt with Myco P.

 

Megan

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We cannot get rid of myco p. we have tried zith , augmentin, biaxin , rifsmpin and doxycycline. After 15 months of abx last time we tested dd was still +. Doctor told us a last resort is cipro but I am reluctant. ASO has returned to normal and Lyme seems quiet at the moment. We are retesting now if there has been any change I will post. There was a study posted once on this board about iv abx for myco. Curious what others have to say

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Yes. We have had all kinds of sinus, ear, coughing issues. All three of my kids and myself. I am worried bc from what I read it is really hard to get rid of and we are trying to eradicate it from 4 of us. We will go see him tomorrow and pray the Zithromax gets rid of it all.

 

I've had so many docs tell me I am crazy. It is nice to be on the next leg of our journey

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I'm starting to think that Myco P is impossible to irradicate. Everyone in my family has been treated aggressively with multiple abx (sometimes combo abx) for the last 2.5+ years and we all still have high Myco P. Both of my children have been on IV abx for 2 years (9 months of orals before this) and my DH and I have been on orals the entire tx time.

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My ds had all the sinus, ear and coughing issues at the same age of 8 . I though of walking ammonia also but never got him tested for myco p! One thing you always have to remember and be true to it is that you are not going crazy!! Every single one of these mothers probably feel this way as did I for so many years but that is what helps these children. When a mom thinks she is going crazy that's bc she is truly helping. We did diet but then mold was in the picture too. I would suggest to make sure there are no food sensitivities or allergies. Food sensitivities and allergies helped a lot. Basically total detox and starting from scratch helped so much. And watch the mold. But in our case food and diet was number one!

Mar

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I'm starting to think that Myco P is impossible to irradicate. Everyone in my family has been treated aggressively with multiple abx (sometimes combo abx) for the last 2.5+ years and we all still have high Myco P. Both of my children have been on IV abx for 2 years (9 months of orals before this) and my DH and I have been on orals the entire tx time.

I agree.

Also, there are many experts who feel that positive myco p. could be a "ringer" for something else-another bacteria, antibodies, auto-antibodies or even something totally harmless.

So perhaps, instead of lab confirmed eradication, a thorough effort at treatment (whatever that may be) should be attempted & then after that, move on to more definitive culprits.

I am not suggesting personally to mdmom, just pointing out the possibilty of false myco p. results.

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