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We saw Dr Lawrence at Shands on Thurs in Gainesville, Fl. Anyone seen him, any feedback? Really nice guy, but no answers. Said he will do research and see us Tuesday at our Rheum appts.

Says the Myco P is 2 possible things. 1) Chronic Myco P, which he has never treated. or 2) an Immunological T cell defect. The old Myco P cells are being activated by any new infection, and thus show up on a blood test.

 

Anyone else dealing with this?

 

14 yo dd possible PANDAS, current Myco P infection, high IGGs. 3 rounds of Zith, as soon as finished with abx, symptoms return. 11 yo ds, PANDAS, high Myco P iggs, was on Clindamycin..completely regressed with all PANDAS symptoms when switched to Zith. Zith gave him diarrhea, ruled out Gi Bugs, now on Biaxin.

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No experience with Dr Lawrence.

 

We have seen Dr Murphy at the Rothman Center in St Pete. I can not tell you right now how she treats Myco P because we just got a negative strep but positive Myco P -- waiting to hear back from her office. We have positive IGG >5 with a reference of positive being >=1.10. We have a negative IGM. So, I'm not sure what to expect. We requested a different abx because he has been on Augentin which doesn't work for MycoP. I'm not sure if she will treat because he tested negative on the IGM. I'll let you know how it turns out.

 

My son is also 14. Also tested pos for recent Mono and extremely high allergy to dust -- like off the chart high.

 

Shannon

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We saw Dr Lawrence at Shands on Thurs in Gainesville, Fl. Anyone seen him, any feedback? Really nice guy, but no answers. Said he will do research and see us Tuesday at our Rheum appts.

Says the Myco P is 2 possible things. 1) Chronic Myco P, which he has never treated. or 2) an Immunological T cell defect. The old Myco P cells are being activated by any new infection, and thus show up on a blood test.

 

Anyone else dealing with this?

 

14 yo dd possible PANDAS, current Myco P infection, high IGGs. 3 rounds of Zith, as soon as finished with abx, symptoms return. 11 yo ds, PANDAS, high Myco P iggs, was on Clindamycin..completely regressed with all PANDAS symptoms when switched to Zith. Zith gave him diarrhea, ruled out Gi Bugs, now on Biaxin.

 

 

MycoP can be a co-infection of Lyme, as it was for me. I have been seeing a LLMD, as well as a lung specialist at a major teaching hospital. He pretty much defers to the LLMD (kind of blew my mind that he was so open to the possibility, and didn't blow me off when I mentioned the lyme). I have now been getting tx for 1 1/2 years with multiple abx cocktails (LLMD's treat by protocol). My only symptom was mycoP. BTW, I recently started accupuncture in addition to the abx cocktails, and for the first time in many years, I finally feel like I have gotten rid of the vast majority of mycoP symptoms. I actually have multiple days now where I have no mycoP symptoms (I had it for at least 3 years before it was diagnosed.)

 

If you haven't looked at the possibility of Lyme, I would do it. Turns out everyone in my family has it, and DH was the only one who tested 100% positive on blood testing. If you want more info, PM me, and/or ask others on the Lyme forum.

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Dr Murphy has prescribed zithro for DS. I was concerned that she wouldn't treat because he was negative for IGM Myco P. Anyway, I don't think there is a better doctor in FL for you to see for PANDAS/PITAND symptoms -- although her area of research is PANDAS. You may want to give her office a call if your current doc doesn't work out. Her office is booking out two months, but we got in a month early by being on the cancellation list.

 

Going to wait and see how things go on the zithro before we persue lyme testing.

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just got a call that my pandas child who is doing relatively well was very high for an active myco p infection!

I did not talk to doc, he left a message and we will see our normal pandas doc this week and will talk to ordering doc later today or tomorrow.

I honestly have ignored the myco p conversations up until this point. he did say they would take her off augmentin and go back to higher dose zithro for 4 weeks.

any comments on anything I need to know? what are physical symptoms could she have?

Edited by PowPow
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