Best CF Centers in the World?

[Dank]

Is there any way to judge where a CF center excels and how to measure it? I mean I think it all depends on how much freedom the doctors have to suggest medication, and perhaps what medication they have available. I'm finding myself longing for a CF center focused on not only the latest and greatest medication that's available, but also herbal remedies and eastern medicine. My doctors aren't opposed to this now (John Hopkins currently) but they will not recommend or suggest anything that's not proven in their documentation/textbooks. They won't suggest or recommend anything outside of medication to me, and I feel like it could be limiting. I'm not saying they are limited, because they are quite possibly the best set of doctors I've had the pleasure of knowing and working with, they are very kind and understanding of my personal habits and my lifestyle - however it seems that it may be a limitation of the country I'm living in and the mindset behind pharmaceutical medications. I'm a huge fan of science, and how far we've come in the past few years - I'm a huge fan of technology also, however I feel like we're not taking into account the 100s or 1000s of years of record and history on the other half of the world's knowledge.. I don't know if there's a huge disparity between language barrier or what science sees as acceptable/proven....

What i'm getting at is, does anyone know of, or have researched other places in the world that specialize in CF who do things differently and have good results?! I have no problem with the idea of uprooting my life to move and learn a new language if that's what it takes to extend the quality of life due to medicine, etc.

Otherwise my next question is, does anyone know eastern medicine CF specialists in the US? If that is a thing... I'll be doing some of my own googling, but figured i'd inquire input from the community.

Thanks!

 

[Aboveallislove]

Dank,
I totally know what you mean. I took in some research at our last appointment to discuss probiotics with CF doctor and the research showed it helps with lung inflammation and excerbations, pseudo etc. I wanted her okay on trying a probiotic for DS based on the trial results. Her response was: It isn't established as working blah blah blah. Our first CF doctor (who went to another to head up another clinic) told us early on her approach is "if it does no harm I am open to trying it." She has an eastern background and as she explained "my grandfather was old fashion and practiced eastern medicine, so I am very open to it. unfortunately he was so old fashion that he didn't teach me it because I was a girl." I think if she were still DS's doctor she would have reviewed literature, considered potential negatives and "okayed" it. (She's a peds CF doctor). I know there's a mom on here from Europe whose CF doctor uses Cipro (I think that's it) prophelactially (sp?) and has from very young age and that her country is more cutting edge trial. Not sure if this helps.

 

[Mr CFX]

I can probably help anyone interested in this like you Dank. Fire me a pm with any questions as I don't want to go into too much detail in my posts but I have experience of many different types of medicine and ways of dealing with cf etc as recently ive had to make huge changes and not follow the doctors and cf team orders anymore and help myself if I wish to have a better life

 

[jaimers]

I'm not sure about CF centers that will cater towards the "alternative" medicine routes. Hard to imagine there aren't any out there, just not sure how you would find them. There are, however, quite a few people on this site that have explored lots of alternative medicines. If you search around in the the "alternative medicine" section there is a lot of info there about diet, different herbal supplements, etc. I"m sure if you post there some people will chime in especially if you have specific questions. It seems to be one of those things that you may have to do most of the research and experimentation on your own.

 

[Simba15]

Is there any way to judge where a CF center excels and how to measure it? I mean I think it all depends on how much freedom the doctors have to suggest medication, and perhaps what medication they have available. I'm finding myself longing for a CF center focused on not only the latest and greatest medication that's available, but also herbal remedies and eastern medicine. My doctors aren't opposed to this now (John Hopkins currently) but they will not recommend or suggest anything that's not proven in their documentation/textbooks. They won't suggest or recommend anything outside of medication to me, and I feel like it could be limiting. I'm not saying they are limited, because they are quite possibly the best set of doctors I've had the pleasure of knowing and working with, they are very kind and understanding of my personal habits and my lifestyle - however it seems that it may be a limitation of the country I'm living in and the mindset behind pharmaceutical medications. I'm a huge fan of science, and how far we've come in the past few years - I'm a huge fan of technology also, however I feel like we're not taking into account the 100s or 1000s of years of record and history on the other half of the world's knowledge.. I don't know if there's a huge disparity between language barrier or what science sees as acceptable/proven....

What i'm getting at is, does anyone know of, or have researched other places in the world that specialize in CF who do things differently and have good results?! I have no problem with the idea of uprooting my life to move and learn a new language if that's what it takes to extend the quality of life due to medicine, etc.

Otherwise my next question is, does anyone know eastern medicine CF specialists in the US? If that is a thing... I'll be doing some of my own googling, but figured i'd inquire input from the community.

Thanks!

Excellent question. I think we should all post our experiences with different places. I trust the patients more than the doctor's on rating services.

 

[Dank]

I'm aware of the alternative medicine section on the forums, I keep up with a few people who I think are really dedicated who have blogs in the area, etc. I'm more interested to see if there are doctors that anyone knows that specialize in eastern medicine and CF...

 

[Mr CFX]

I dont think you will have much luck with finding an actual cf center or doctor or even eastern medicine or herbal docs who solely care for cf.

The reason for this is because firstly cf isnt common amongst middle easterns/ asians and the lands where all this stuff comes from where people that use this stuff day in day out for many generations and thousands of years. So you won't find someone dedicated just for cf.

However what you will find are people dedicated to solely working on all of cfs symptoms and bugs etc as you see CF the word is a western word but it's not the word that makes the illness its the symptoms, problems and so on. And for that there are many people you just need to know who to look for, like people who specialise in lung issues etc.

Luckily I've never had this issue as being from that background along with a medical background I've always had both sides but until recently I used to only focus on the pharma side because of cf centers advice. Big mistake as now focusing more on the other alternative has opened up a world of great and works as well even with the pharma meds so it doesn't need to be one or the other if you don't want it to.

I think secretly ive been so well internally because all of our cooking actually contains lots of herbs and remedies for cf that ive been eating without knowing. I guess that's where my parents had it sussed from the start but were always discouraged to give extra remedies or things separately, which now is making a huge difference. If only I had known we could go back in time or predict the future then it could have been done much earlier and I'd be much better. Ah well at least the positive side is I got a load through meals which is still better than nothing and am sure that is a factor in my overall immunity and health being so well despite lung function figures and low weight. I used to feel and perform like I was double my lung function as its never been super high and neither has my weight but I never had the usual weak immune system like others.

CFs outlook is so dated when it comes to diet etc it's upsetting really!

 

[ymikhale]

I completely feel your pain. I am in France and the best i could get out of my dd's CF doctor was to recommend a probiotic. During the annual visit last week I even had to hide from them that I don't give my dd gruyere cheese and heavy cream. My intermediate solution was to find a naturopathic doctor who is also an MD (I know you asked about eastern medidcine but maybe there are eastern doctors who are also MDs?). He is not a CF specialist but has medical education, something that I find reassuring, but he approaches CF from a different prospective than just maximizing calories and giving antibiotics. Naturally his treatments are complementary to our regulat CF care.