[Cynthia]

I was only diagnosed with ILD about 10 days ago and they’re still trying to determine which disease I have, but they strongly suspect RA/autoimmune. I felt so impotent waiting for treatment that I put myself on the Autoimmune Protocol, which is like Paleo but with more fruits. I have to say I feel a lot better. The tightness in my chest went away and so did the dizziness/brain fog. I spent a fortune at Whole Foods getting my pantry set up, but at least it’s given me something proactive to do while waiting for what’s next. I’m not doing any grains right now but I do use the cassava flour tortillas a lot. They’re not bad.

[Cynthia]

Do you have to be IPF to get Ofev? I was just diagnosed with ILD last week and they’re doing tests now to identify the disease. They suspect RA and autoimmune. If that’s the case will I be eligible for Ofev?

[Cynthia]

I hear you, Timothy. I’m not supposed to do any alcohol on AIP, but this was not the week I was ready to give that up entirely. I’ve been drinking either a one-ounce martini or three ounces of wine before dinner. Even that little bit makes me feel a little better. If I’m put on meds where alcohol is forbidden, or if there’s some strong evidence that alcohol is detrimental to my long-term health, I’ll follow the doctor’s orders. In the meantime, I think I’m throwing myself into this AIP diet to take my mind off my recent diagnosis, and as Charlene noted, to give me some sense of control over it.

[Cynthia]

Thanks, Peter. I’ll be sure to inquire about laser therapy.

[Cynthia]

Thanks, Charlene and Mark. The diagnosis shocked me because my doctor had previously thought the cough and shortness of breath were a result of sinus issues and post-nasal drip. To go from that to a fatal lung disease was a real punch in the stomach. When the pulmonologist told me what I had I didn’t fully understand the gravity of it all and didn’t know enough to ask many questions. I see him again in four weeks — after he’s received results from blood tests, walking/breathing tests, a report from a rheumatologist, etc. — and I’m preparing a list of questions based on all the research I’ve been doing (and lots of stalking on this site). I’d like to post something asking others what I should be sure to ask during that appointment. On what forum would that be most appropriate? I’m also wondering if I should ask him if I should consult with someone in Boston (Brigham & Women’s) where there’s much more work around this disease than there is here in Providence, RI.