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Kaiser and referrals out of network
MAC & Bronchiectasis | Last Active: 3 days ago | Replies (20)Comment receiving replies
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.
Replies to "Sure. 1) surgery was Kaiser Oakland. Surgeon Jeff Vellota. 2) Cleared 1/24 & started having positives..."
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@chris1321 thanks so much for the additional info. I would really appreciate hearing more of your story. I tried to private message you to give you my phone number but like paxmundi, the system is not allowing me to private message you. Paxmundi and I had a wonderful conversation yesterday, perhaps the three of us could have a conference call? Maybe you could private message me? I don’t know if you have been able to private message paxmundi yet but she has my phone number. One way or another, I hope we can connect!