Nightwriter
New member
I want to preface my comments by saying I don't know what the protocol is for symptomless people. And I am big on preventative care when it especially comes to preventing and reducing inflammation/and future infections. But I would like to raise a few questions about Stacia because of a few things that you mentioned.
Are you saying she has absolutely NO lung involvement? What about sinus problems? Infections? Post nasal drip? Any asthma or allergy testing? I guess I am wondering why they have her using the vest. The vest is to dislodge mucus and help bring it up. I am not saying she doesn't need it, but I am wondering about this. Are they doing anything or advising you on how to keep inflammation down, so that she doesn't "get" lung issues? Have they said anything or prescribed anything for inflammation? When she uses the vest, does anything come up? Does the vest do anything for her according to the doctors and what?
I guess I raise these questions because I went to a CF clinic for the first time last year (my insurance required it) and I was dismayed by their cookie cutter approach. Everyone no matter what their symptoms or tests showed received the same protocol. Many of things they were suggesting for me did not fit and when I asked my doctor about their suggestions for me -- she agreed with ME. She has me on an anti-inflammatory protocol which was working well.
Some examples: They told me to start taking added salt. I asked if there was a way they could tell if I am deficient. Was there a test for this? They told me that I could look at my blood test. I knew my blood test showed my salt to be completely normal. So that cookie cutter advice was wrong for me.
They told me to take Zithromax 3 times a week. That also seemed wrong for me. I hadn't even been on any antibiotic in a very long time and my inflammation (because of all that I do) was greatly reduced. My doctor said this would have been wrong for ME. But if I were doing poorly, you bet she'd give me Zithromax. And my big question was if someone takes Zithromax all the time (and unnecessarily) doesn't staph become resistant to it? The answer is yes.
They wanted me to gain weight because according to the chart, I was underweight. I actually watch my weight (can gain easily) and maintain a weight that is healthy for me. And again, my health was very stable.
When I finally spoke to the doctor at the clinic, I voiced my concerns, saying that none of these things seemed right for me -- and he said he understood. I told him everything that I did to keep inflammation down and he was open-minded.
The other question that is in my mind is this. I didn't have any symptoms until I was 21 -- a post nasal drip that should have been dealt with and wasn't. But I wonder now, if they had genetic tests back in those days -- would they have me on hours of treatments when I exhibited no symptoms whatsoever. For me, I wish I knew about environmental/dietary contributors. Because I became sick only after I was exposed to Formaldehyde for a year in my college classes.
I wish they would do a study on people who become symptomatic later -- was there anything different preceding onset of symptoms. I have noticed in many people's stories, they moved, or got sick after a bonfire, and I could see certain triggers.
Again, please don't take this as medical advice in any way. I am not an expert at all. Just some thoughts and maybe things to ask your doctor about.
Are you saying she has absolutely NO lung involvement? What about sinus problems? Infections? Post nasal drip? Any asthma or allergy testing? I guess I am wondering why they have her using the vest. The vest is to dislodge mucus and help bring it up. I am not saying she doesn't need it, but I am wondering about this. Are they doing anything or advising you on how to keep inflammation down, so that she doesn't "get" lung issues? Have they said anything or prescribed anything for inflammation? When she uses the vest, does anything come up? Does the vest do anything for her according to the doctors and what?
I guess I raise these questions because I went to a CF clinic for the first time last year (my insurance required it) and I was dismayed by their cookie cutter approach. Everyone no matter what their symptoms or tests showed received the same protocol. Many of things they were suggesting for me did not fit and when I asked my doctor about their suggestions for me -- she agreed with ME. She has me on an anti-inflammatory protocol which was working well.
Some examples: They told me to start taking added salt. I asked if there was a way they could tell if I am deficient. Was there a test for this? They told me that I could look at my blood test. I knew my blood test showed my salt to be completely normal. So that cookie cutter advice was wrong for me.
They told me to take Zithromax 3 times a week. That also seemed wrong for me. I hadn't even been on any antibiotic in a very long time and my inflammation (because of all that I do) was greatly reduced. My doctor said this would have been wrong for ME. But if I were doing poorly, you bet she'd give me Zithromax. And my big question was if someone takes Zithromax all the time (and unnecessarily) doesn't staph become resistant to it? The answer is yes.
They wanted me to gain weight because according to the chart, I was underweight. I actually watch my weight (can gain easily) and maintain a weight that is healthy for me. And again, my health was very stable.
When I finally spoke to the doctor at the clinic, I voiced my concerns, saying that none of these things seemed right for me -- and he said he understood. I told him everything that I did to keep inflammation down and he was open-minded.
The other question that is in my mind is this. I didn't have any symptoms until I was 21 -- a post nasal drip that should have been dealt with and wasn't. But I wonder now, if they had genetic tests back in those days -- would they have me on hours of treatments when I exhibited no symptoms whatsoever. For me, I wish I knew about environmental/dietary contributors. Because I became sick only after I was exposed to Formaldehyde for a year in my college classes.
I wish they would do a study on people who become symptomatic later -- was there anything different preceding onset of symptoms. I have noticed in many people's stories, they moved, or got sick after a bonfire, and I could see certain triggers.
Again, please don't take this as medical advice in any way. I am not an expert at all. Just some thoughts and maybe things to ask your doctor about.