CF Clinic + Holistic medicine, does it exist? America or Europe?

[Dank]

Ethan - I've been doing a bit of research on the medications and treatments they have provided me with and have not come up with much for my gene types. I do realize my gene falls into a classification, and other similar classification genes have had certain successes. I'm no sheep and not gullible in the slightest. I'll be questioning everything till I find something that makes sense to me or for me.

Scarlett - I am so glad you have good experience. Where are you from?

Momto2 - I am very skeptical and will try to do what i can to not be in a bad situation. Last year i got really sick and lost some lung function that i'm not sure I will see back again. I don't want to continue down the path of sickness like that if I can avoid it.

 

[ethan508]

I wonder if there is anyway to extract the data on your specific gene type from the current body of research. I agreed that your gene type would make it difficult to draw 100% exact conclusions from the studies as published. But then again science is never good enough to be 100%. Typically we are stuck relying on statitical significant results not absolutes. Even when the CF genes match, there are a million other variables that aren't being considered in any study. That being said, I'm not sure what other method we can use. Like you said the balance between life and treatment is problematic. When you find the right one for you, please share.

 

[Tavitsre]

Hi Dank, I don't have anything helpful to tell you except to say you're not alone in wanting to be open minded, balanced and analytical in your thinking about these treatments. I'm in Australia, my baby has CF and so far one of the most frustrating things has been trying to get answers to our questions from the medical team. We are met with defensiveness anytime we question the usefulness of a particular treatment and they are not interested in helping us with alternative treatments or helping us weigh the risks; in fact they actively discourage us from even looking anywhere other than their official sources and it's clearly considered a pain in the butt that we don't just blindly go along with everything they suggest. (Suggest is too nice a word; it's more like order)
The pharmacist has been the most helpful so far, citing recent research and conference discussions eg on how taking probiotics is in fact worthwhile (this after the doctor told us there was no point because "the antibiotics will just kill the good bacteria". What the doctor failed to understand or to bother explaining to me is that antibiotics work over time to kill off the bugs; if you are consistently replenishing the good bugs between doses it's at least giving the baby a chance long term at gut health)
Clearly navigating our baby's treatment is going to be a fight the whole way; so far it seems like it will be important to get a second opinion from someone knowledgeable in the holistic side of things to help make more informed decisions.
I'm also interested to know if practitioners in Europe might be more open minded so thank you for raising this topic!

 

[LittleLab4CF]

Europe has a more established system of health clinics that are the embodiment of holistic treatment of the whole person. Health Spas in both Eastern and Western Europe have addressed respiratory diseases, CF in particular built from a traditional form of treatment before doctors could just give you a pill. I watched a documentary a couple years back on undergound health spas built in spent areas of salt mines. in Places like Prauge where a gigantic salt dome lies just below the surface and is larger than the city proper, asthmatics, CFers, and others with respiratory illnesses have been using abandoned underground salt mines and even uranium or pitchblend mines have been used and are still in use. It was believed and still many swear by radium treatment or running around in an atmosphere with loads of radon gas. I'd probably skip the radium/radon treatment but the saturated environment of exposure to salt rooms a thousand feet down has done wonders for many. If the idea of two weeks in a ten thousand foot deep salt dome, healthy meals, and many healthful and healthy services sounds like a dream but for those who don't like the idea of being in a confined space, Switzerland has healthy air in mountain health retreats and spas. Take your pick, Scandinavia, Eastern or western Europe, and Britannia are full of spas and the highest concentrations of CFers and others with hereditary respiratory diseases.

Hot Springs or mineral springs are also good sources of health retreats. The Rocky Mountains offer a lot of hot springs and I even took a trip some years back, touring about a dozen private and municipal hot springs. Beginning West of Denver Colorado, up through Saratoga Wyoming near Laramie, to the center of the State, Thermopolis, my favorite and generally secret hot springs is connected to Yellowstone's gigantic geothermal setting, If you go up through Bozeman MT following a string of hot springs and mineral springs over the Coninental divide down into the Bitterroot Valley toward Spokane all the way to Seattle if you wish. A lot of alternative medicine has made the Bitterroot Valley onto the Pacific coast. Darby Mt is about the epicenter. I don't know a specific source or location but that is your quest.

If you look, you will find something that will meet your needs, Good Luck,

LL

I would suggest you focus your search for respiratory disease clinics using key words like salt inhalation caverns, Eastern Europe and such. Contact various country's departments of Tourism to get help finding how the various clinics are listed and grouped so you can see all that is available. Clinic vacations or whatever you want to call it. Europeans are in the habit of using happy terms for their many curative spas, it is deeply engrained in their health care culture. You may find some of the best and affordable health spas in Poland, and other former Eastern Bloc countries.

In the U.S. I would suggest you form your own team using available practitioners from disciplines you want to utilize.

 

[triples15]

Hi Dank!

So I'm pretty late to the ballgame here, AND what I'm going to say is not what you are asking at all. Helpful, huh?

Being as we share a "weirdo" mutation (that's what I call it), and you mentioned you don't produce a lot of sputum, I figure it's worth mentioning. I didn't used to produce much sputum either, and at that time I didn't feel like Hyper-Sal did anything for me, other than irritate my throat. When Hyper-Sal first came out I did not understand the hype about it, at all. I hated it. At the time I had been nebbing Mucomyst (N-Acetylcysteine or NAC for short) for many years and for me it worked WAY better than Hyper-Sal. I think that the clinic at Minnesota still regularly uses, last I heard, but I could be wrong. I continued to use it, rather than Hyper-Sal, until a couple years ago when there was a months long shortage of it. At that point I felt like the Hyper-Sal was working pretty well for me, so I have just stuck with it. I do, at times, think I should add NAC back in and maybe still will eventually.

I believe they are also currently studying oral NAC (drinking it) in CF patients. Or at least at some point they were. I have known a few CFers who drink it in the form of effervescent tablets dissolved in water. They say they have seen good results. It's available over the counter, but pretty pricy. They maker is Bioadvantix, if you'd want to google it.

Anyway, there is quite a bit of info about NAC/glutathione out there if want to check it out! It may not hurt to ask your doctor to try it as a neb. I know it's far from homeopathic though!! But like I said, worked a lot better than HyperSal for me back in the days when I didn't have as much mucus!!

Better run, but take care!

Autumn 34 w/CF

 

[Renee Vasquez]

Michigan has a CSHSC program and it pays for all of my CF related medicines. No co-pays. You do pay a fee but it is ridiculously low and based on income. I wanna say if you fall into the HIGHEST income level it is only around 2500 a year and I fell into around 43,000 for a family of 3 and it only cost me 198 a year and covers EVERYTHING CF related. I love my doctor at U of M as well and I want to say they rank pretty high as far as CF hospitals go. I am a very mild case though so i don't take much work, but my brother they have referred him to other doctors, have tried different things with him to get his issues under control as well, and work well with him. Affordability wise I've learned MI is the state to have CF in, and my fiancee and I know its pretty unlikely we move out of state just based on how much help we get with all these costs here and having to take those cost on ourselves should we move anywhere else. I even lived in Baltimore, MD for awhile and would fly back to MI for my appointments because that was cheaper and easier than trying to switch everything there and thats taking into account that I'd be going to John Hopkins there which i believe was at the time the #1 CF hospital.
Healthy life wise, non-medications. I think Tea does wonders as well. I'm mild so I don't like to compare my CF to others because I'm aware i'm an exception and not the rule. But I fully believe trying to eat well and do the little things have a BIG impact on my staying so healthy. I walk ALOT when weather permits, I eat healthy and read about the "superfoods" and add them into my weekly meal plans,I exercise a few times a week, even light stuff if i'm not feeling the greatest, because I think every little effort counts. I also am a "non-compliant" person when it comes to meds. It use to drive my pediatric Dr. crazy. My adult Dr. pretty much says you know what you want, he'll lead me to water but can't make me drink. And usually is understanding when I explain why i'm not gonna try meds, which is usually "if its not broke, i'm not trying to fix it!" But my lungs are right up around 100%, and the only thing i do take is enzymes. Which i feel make the difference but when i don't, like when i was pregnant it made no difference to how i felt if i took them or didn't, so i didn't and just stockpiled the extra. They couldn't explain why it was the way it was but my dr. said if it works for you, do whatever you feel like doing.
Anyways, good luck on your journey. I hope the Michigan info helps a little. Its a decent place to live if you don't mind the 20 days of winter where your either trapped in your home because of lots of snow fall or because the 20 below zero wind chill hurts your face.

 

[Renee Vasquez]

" The Japanese work mentality is a great example of the way to live. Work hard, plan far into the future, and focus on the business while not compromising your morals or your integrity. At least that's what my research tells me..they could be just as bad..."

lol. .. . They have a word for people who die at work because they've literally worked themselves to death, and its SO COMMON that this happens that they have a word for it. lol. Just saying, don't work like the japanese! "Japanese -karoshi, literally translated as “death from overwork,” or occupational sudden death, mainly from heart attack and stroke due to stress.

 

[Dank]

It's very interesting to hear your experience. Like you I don't often compare my CF to others either. It's very interesting to hear how you pay based on your income for all of your meds and things are covered. I wish more places would do this, it seems like a great idea.

I'm not familiar enough to know about other countries as I have not been out of this one, so that was kind of the purpose of the thread. I had heard about that, but also heard that they were putting things in place to prevent that in the future, like afternoon periods of time where nobody works and such (siestas?). My experience is very limited, I just feel very lacking in my current place and have always wondered what the world could bring me in terms of CF care.

 

[kmhbeauty]

Hi dank, I self doctor with some holistic things. I am 29 years old currently but I was DX at 15. I never took CF treatments because I rebelled. Once I came around, I gave them a short and they either made me worse or did nothing at all for me. Some will hate me for saying this, but I don't believe in them. The vest, I did notice a positive difference, but that's it. Try looking up NAC, its natural and there is scientific journals that I read at my college with positive results for it. I also take cytra plus for the coughing up blood. I have not been full on sick in a year now. I cough up blood on occasion but since using cytra plus, it went from cups of blood to one table spoon. I try to exercise as well, intense exercise for an hour (running/hiking). My lung function is around 78 percent. My rate of decline over the last 10 years is that of a smoker, so its small. Im also double delta f508. Just some food for thought. Be your own holistic doctor, that's what I do.

 

[Twistofchaos]

Don't really understand the rare mutation argument to be honest. CF meds in days of yore are not mutation specific at all. They fight symptoms in a broad sense not the cause. (sadly)

+10 from me for oral supplementation with NAC. Have been much less susceptible to colds and random virusses which goes a long way in preserving lungfunction. Also made huge strength increases in regards to weightlifting in a short time when I went on which probably signals better digestion and a couple other things.

Certainly no thinking outside the box for CF clinics here in the Netherlands. I think that's the same everywhere. On the one hand that's good ofcourse, go with what's known to work from research. Only 24 hours in a day and if one wishes to have a life outside of CF one has to limit CF treatment to the handful things that are most effective.
On the other hand there's so much out there in areas of fe. supplementation and lifestyle where small changes can have a significant impact on health that regular CF treatment is lagging behind.
So careful experimentation is fine but it should be ontop of and not replace regular treatment. (Though $300 for Pulmozyme is ridiculous, can't argue with that.)
I experiment a lot (mainly dietary) but on my own account and when I find something useful ofcourse it's received with Bert stare. Atleast they take notes of it and usually get curious about it later when it's had time to sink in so that's okay by me.