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Biaxin and mycoP


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Upon initial lab tests, we (all four of us) did have Myco P in our systems. Dr. T treated all of us with a round of Zith. Strep was our initial onset, however Myco P continues to be the monster we haven't been able to clear. Dx October 2012 - Now, we have never been completely clear of Myco P on DS5 lab work.

 

After a series of med changes, a 30 day Steroid burts and now a Clendomyicin/Rifampin combo. We shall see what comes to us. Next we will explore the IVIG. Dr. T seems to think this is the avenue we need to go and has been exhausting every other option prior to. We have been in exaserbation for quite some time. Clearing the Myco is a challenge. Stay positive! Best of luck to you.

 

KK

 

I apologize, I saw the second post and replied to that. We have not tried the Bioxin as of yet:)

Edited by kleek3
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HI Kleek3 and EmilyK, What were your myco-p IgG levels? My DS13 IgG level was 3.83 in April, and is down to 2.32 now. His IgM level was always low. He has terrible OCD, and his Cunningham panel was high. Family tests revealed IgG 2.32 for me, 4.00 for husband, and 4.03 for sister. IgM levels were very low for all family members except sister, whose levels were almost positive. (647 when 770 is positive at quest). At what point do you treat family members? Do your doctors treat high IgG levels, or only high IgM levels? Thanks.

Motherof2

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That is the way Biaxin worked for my daughter. It helped but never got the BIG symptoms. We finally went to an LLMD who started using combo antibiotics. That is usually what stubborn Myco P needs. She got much better on Minocycline / Cefdiner combo. It took two years of treatment before her titers came down to a normal range. We are about to draw titers again because our LLMD believes they may be going back up after we switched off the Mino. We are back on Minocycline /Cefdiner / Rifampin at present and things are settling back down. I believe LLMD's are the best at treating Myco p. I am currently reading Buhner's book (recommended by my LLMD)on Lyme co infections. It is all about Mycoplasma and Bartonella. I recommend it to any family dealing with Myco.

 

Dedee

Edited by Dedee
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My DS12 also has Myco. Dr T put him on Biaxin but did not suggest that the rest of our family should be checked. Should I request that we all be checked for it?

DS been on for 1 month and is doing so much better. Also tested positive for the Lyme screener but haven't heard anymore on that.

I emailed Dr. T to ask how long he thinks my DS will be on the Biaxin because he never mentioned that in our conversation (and we were just too overwhelmed with the whole thing to even remember to ask). Haven't heard back from Dr T and we are all wondering. Do I ask about a combo? I know everyone is different but is there any "normal" time range on when levels get within normal limits? Our DS has been dealing with his symptoms for many years and was just diagnosed PANS. We had never even heard of it.

Thank you!!

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