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Kaiser and referrals out of network
MAC & Bronchiectasis | Last Active: 3 days ago | Replies (20)Comment receiving replies
@chris1321 thank you for elaborating. Would you indulge me a few more questions regarding your treatment:
1) Was your bilobectomy done at Kaiser or UCSF?
2) If you cleared in 1/24, and remained clear through 1/25, did you just recently have another sample come back positive for MAC/NTM? I assume so since you are starting treatment again.
3) the Amikacin you are going to start soon, is that IV or Arikayce?
4) Do you know Dr Zha’s thinking for dropping the rifampin for this next round of treatment?
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Sure.
1) surgery was Kaiser Oakland. Surgeon Jeff Vellota.
2) Cleared 1/24 & started having positives 11/24 & again 1/25.
3) Arikayce. Dr Zha preferred direct delivery to lungs for me.
4) No but I will ask this. However there is a clinical trial looking at 2 meds vs 3 meds for MAC tx. The 2 meds exclude Rifampin. My readings revealed Rifampin is not well studied for MAC, rather for TB. I’ve also heard this from David Griffith? (NJH) I believe. Could have been another BE/NTM specialist. Rifampin was my least favorite of the meds. Made my teeth all stained red-brown. Seemed to have the most GI symptoms with this also.
Hope this helps. Lots more of my story if you have any other questions. I’m a dietitian; worked in ID/HIV/AIDS for 15 years. Probably got BE & MAC from overseas travel & untreated pneumonia but idiopathic since we don’t have images from then.
If you can get into UCSF, go.