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Thank God that I don't take medical advise from non medical people.

Have you had a conversation with Suzie's CF Specialist regarding ANY additional meds? If so what response did you get?

You may not need to do anything different than you are doing now except one injection per day. Relax until you talk to your endocrinologist. Been there done that. Good luck. Bill

Outdoors with proper spacing makes sense to me. God bless you JET, keep up the good work. Bill

I would still make the trip to Dana Farber, if only to establish a relationship.

It takes several months for the lab to culture MAC. MAC is treatable but takes many months to turn it around. Wait for a dx before you get too excited. Bill

CF and pollen is a awful combination. The amount of pollen in the air varies daily and is effected by wind and/or rain. I tested negative to all allergies but I am extremely affected by grass and pollen. The allergy Doctor said that I have a "reaction" and not an allergy. Treat the symptoms...

Love: Has he been tested foe (pollen) allergies? Bill

Obviously not you. It is clear that you don't care.

VBS: It is not only you, it is also the rest of us with CF. There rules are there for a reason. Bill

What did your CF Specialist say when you asked him/her this question?

OK, so you want a specialized advocate for each disease or type thereof. Got it.

Just: Does your DD see a CF Specialist or just a "local Doctor". Bill

How would she do, for example, if three drugs were reviewed the same day, one for CF, one for Huntington's and a third for Sharko, Marie, Tooth. Would she have expertise to vote on all these drugs? Or do we need a different advocate for everything including right hand vs left hand surgery?

It is a blood draw (tube). If you are still at BCH you will love Alex Bill

Prior to BC, I was involved in fund raising and attended the CF Annual Dinner. Now only one person with CF (not me) is allowed in a banquet hall that sits over 800 people.

Love: Are you suggesting that the advocate should be a CF Patient or even better a Mom of a CF Patient? Bill

Gee, nobody agrees with me, that what he is doing is working perfectly. Alden81, it looks like we could be wrong.

Leah: I had two tests done (over 2 years) At Lowell General. You will he in a hospital setting, relax and bring a good book to read. Good luck. Bill

OMG you don't need an "eval", you need to HAVE A CF SPECIALIST as your CF DOCTOR. Or, you know what, keep doing what you are doing as it seems to be working perfectly for you.