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

[Dank]

I've been told by many doctors locally that they don't promote or condone alternative medicine because of lack of data or studies. I'm just curious if any local clinics to you are promoting of holistic alternatives? Is there a such thing in this country? I'm really bummed out by my options of CF care - even though they are a great team and very responsive, I've been labeled as non-compliant with medication because I refuse to just blindly accept medication without further research - and because I believe I fall into a small subset of CFers with my rare genetypes and symptoms, it's hard for me to except the one glove fits all scenario of drugs and treatments.

It would be nice if there were more options, but I feel like no matter where I move in America, I'm going to have the same experience. Even though pharmaceutical advances have come a very long way (kalydeco still costs a lot, and isn't approved for my gene type even though I share similar symptoms to those it helps...and even if it was, do you think my insurance would cover it? I doubt it, it costs me 60$ copay for my inhaler!) Thoughts? I can elaborate further on my experience or viewpoint, but I'd rather not get into debates about it. I'm more interested to see if there's any point in staying in this country, or if other counties have better healthcare and treatment for CFers... it would give me more motivation to leave. There are so many systems in place that are very anti-healthy in this country and it's sickening. The average workday combined with the lack of acceptance of being sick in general - mixed in with the mindset of, if it's broken i'll just give you pills to fix it - COMBINED with the corporate America mentality where everyone is trying to work 100 hour work weeks to ATTEMPT to get ahead. I just want to throw my hands in the air and scream.

Sorry for the rant at the end here, just looking for information about other CF clinics, other countries as well, please chime in and let me know where you're from.

 

[believingjesus]

I watched a documentary a few years ago by Micheal Moore. Im sure you could find it out there somewhere (idk what it was called but probably something like - Healthcare in America). It showed how this system is so broken especially if u have any medical issues at all. I would highly suggest watching that as he explains it way better than I could ever. Canada has healthcare that is to all citizens and costs like $10 for each medicine. I have heard many bash that program and say there was long lines to get into the doctor but many that said that was just not true. I would watch that show. I often have thought of moving there if we had a job there.

I also wanted to add: my son takes one capsule every day of Turmeric. I had read on here from someone - I think it may have been kmhbeauty - I'm not sure!!! - that takes turmeric and the benefits. My son has taken it for about 3 years now and he is doing well. To date his lung function is over 100%. I don't know if its the turmeric or the pulmozyme or Tobi or doing his Vest every day twice a day along with his nebulizer treatments or the prayers for him. I think all those combined. I would always do your vest and neb treatments even if you don't want to as I know they will benefit you in the long run and won't hurt you. I had asked the doctors office about glutathione but they told me, as they did with Turmeric, that there have been no studies to prove it and they can not recommend it and we are on our own with that. We have not started Glutathione.

 

[Printer]

Dank:

CF is treated in every other country as it is in the USA. You may as well stay where you are and just remain "non-compliant" here. Continue to refuse medications and let us know how that works out for you.

Bill

 

[Simba15]

There isn't any reason you can't visit your own ND and go to the clinic. I stopped going to the clinic becase they didn't have a clue what they were doing. I go to an ND and am doing much better since I started that. I was skeptical at first and now I am a believer. If I get more sick I'll go to clinic but honestly, their medical "advice" was horrendous (and we are talking an Ivy League Hospital). They completely missed a major diagnosis (in addition to the CF) I have - didn't even test for it.

I've been told by many doctors locally that they don't promote or condone alternative medicine because of lack of data or studies. I'm just curious if any local clinics to you are promoting of holistic alternatives? Is there a such thing in this country? I'm really bummed out by my options of CF care - even though they are a great team and very responsive, I've been labeled as non-compliant with medication because I refuse to just blindly accept medication without further research - and because I believe I fall into a small subset of CFers with my rare genetypes and symptoms, it's hard for me to except the one glove fits all scenario of drugs and treatments.

It would be nice if there were more options, but I feel like no matter where I move in America, I'm going to have the same experience. Even though pharmaceutical advances have come a very long way (kalydeco still costs a lot, and isn't approved for my gene type even though I share similar symptoms to those it helps...and even if it was, do you think my insurance would cover it? I doubt it, it costs me 60$ copay for my inhaler!) Thoughts? I can elaborate further on my experience or viewpoint, but I'd rather not get into debates about it. I'm more interested to see if there's any point in staying in this country, or if other counties have better healthcare and treatment for CFers... it would give me more motivation to leave. There are so many systems in place that are very anti-healthy in this country and it's sickening. The average workday combined with the lack of acceptance of being sick in general - mixed in with the mindset of, if it's broken i'll just give you pills to fix it - COMBINED with the corporate America mentality where everyone is trying to work 100 hour work weeks to ATTEMPT to get ahead. I just want to throw my hands in the air and scream.

Sorry for the rant at the end here, just looking for information about other CF clinics, other countries as well, please chime in and let me know where you're from.

 

[Dank]

It's not about want. It's that even though I've used the vest for over an hour a day, I don't produce mucus. And in regards to your post Bill, if you have nothing valuable to add to this conversation then don't comment. I have made my own decisions about my health and I've been at 70% lung function for basically the last 10 years. I've went through these test phases where I've attempted to do every hour of treatments that I could manage in a day and I was unsuccessful at increasing that FEV1. My intention to this post is not to highlight my decisions on rationale for the treatments (if you want to blindly accept everything your doctors say, by all means please do, and report back how that works when your CF fails later..) - it's just to see if anyone in addition to their medical advice is seeing holistic experts of various fields of herbal medicine. I've considered visited an apothecary but am uncertain if it's a good idea. Thanks for your post Simba. The problem I have with most doctors outside of the clinic is they have no valuable experience to add. Just as a similar example, I went to a patient first the other week for a sinus problem, and they literally just asked me what medication I wanted to be prescribed. I basically could have written the prescription myself and saved myself the 2 hours of waiting to see the doctor. Most people are very unaware of how CF impacts people, and the problem I have mostly is that all CF is not equal. The 80% of us that have the same gene types, I think it's much easier to treat, but people like myself who have uncommon genes and mutations, I find it difficult to sum us all into the same treatment plans.

Additionally, I'd be on more medications if they weren't literally hundreds of dollars a month AFTER copay assistance programs. So, don't be so quick to judge.

 

[believingjesus]

Dank: have u called the CFF and asked about their patients assistance program there? Randford has mentioned it several times. You might ask them if they can assist in the medicine copays. I understand what you mean as after our cost (including my 2 boys and me and my husband) we average $7,000 out of pocket each year. Most of it is for my son who has cf tho so I imagine it is hard to afford for a young person. Also do u take any herbs now?

 

[jaimers]

Dank have you checked out the alternative medicine forum on here? There are people trying a few different things on there that you may find interesting. I went back in the history of posts there (there aren't a lot) and saw someone mentioning the CFRoundtable newsletter that discussed non-conventional treatment options/alternative/natural medicine options. I went to the newsletter site and unfortunately the issue is from 2008 I think and not available online but it could be requested and emailed or mailed for free. There was also someone from The Netherlands (I think) looking for participants for a homeopathic study. It was several years ago and no one responded on the thread but her contact info is there and could perhaps be worth exploring.

Here is a link to some resources that might help you find a naturopathic doctor near you.
http://www.cnme.org/links.html

There are people on here that have experienced some benefits from more natural medical options in addition to their regular cf treatments so hopefully some of them will chime in. Good luck!

 

[Dank]

I have spoken with CFF regarding the medications, they are the ones who forwarded me over to other copay assistance programs. I have even reached out to the social worker at my CF clinic for further advice on the subject and have not gotten anywhere. The 300$ out of pocket for Pulmozyme is too much for me to pay every month (that's after the copay program, it was over 1000$ before). I suppose I can look for a new job with better insurance, but I'm currently at a decent job with a ton of flexibility (work from home) and great pay. It would be foolish of me to leave without having something similar lined up. I'm still looking into other options there just doesn't seem to be many.

I have browsed that section of the forums, I was hoping to find someone who may help in various areas, not just herbs. (Nutrition, airway clearance, health and lifestyle goals/advice) I am not currently taking herbs, but drink a lot of tea. There's a lady who has an amazing website and I've actually reached out to her a few times regarding some questions about herbs and such. She has been a huge resource, and I admire her work. I'm looking for someone who has the expertise for advice. I just think narrow minded thinking is a terrible thing, and so I'm attempting to look outside the box with this. As I said, I'm ready to move out of the country if it means better and more stable healthcare. The mindset of trying to just fix symptoms and not the originating problem seems to be a mindset that America shares in many areas, not just CF. That combined with the corporate mentality and I'm ready to leave asap.

I'll look into that website, thanks for sharing!

 

[believingjesus]

Wow! I can't imagine paying $300 for pulmozyme! At one time we had to pay $200 month and that was hard and we have 2 incomes. I am disappointed as I was under the impression that the CFF did whatever it took to make sure everyone who wants their medicine that they would help to get it. That is exactly what ive been griping about!!! This IS a malfunction in the healthcare system in America. The CFF has 3.3 billion and they can't help u afford your pulmozyme. Amazing. I know some should be for research and I want that too but what about the people who are here now struggling!!!

 

[Georgiagirl]

I have taken various alternative remedies over the years at different intervals: olive leaf (strengthen immune system, help fight fungus & yeast); amino acids (many benefits, mainly thin mucus & support various organs); tea tree oil steams; himalayan salt inhaler; dessicated liver capsules (B's & aminos); fish oil (inflammation); acidophillus, milk thistle (help liver), Serrapeptase (thin secretions). Just to name a few!!

I do vest 2-3 xa day, but also important to use flutter or acb (active cycle breathing) or acapella in between cycles to help clear mucus. Try to walk when I can, but can be challenge with O2.

I cannot tolerate tobramycin, tobi, pulmozyme, xopenex, several penicillins. I do fairly well for about 9-12 months & then need a good round of IVS to fight infection. I also use hypertonic saline & mucomyst (to prevent gi blockage) And take one zenpep enzyme with meals to maintain weight. The only abx that I cycle 28 days on, 28 off is cayston.

I've also gone to a chiropractor since 1994 and feel that has been what has benefitted me the most. You aren't going to find many that even know of any alternatives. These are things I've found to benefit me over the years and each of us will respond differently whether we use traditional or alternative means or a combination as I have done. You know your body best, with research you can then learn what benefits you the best. I'd look into chiropractic, they may be able to give you the best leads for other alternatives.

 

[believingjesus]

Dank: Did you get my private message about The Assistance Fund? TreasureGoddess gave that to you.

 

[Dank]

No I have not checked, I will look now. Thanks so much for all the suggestions here. You guys give me much hope in attempting to find alternative means. So far the best thing for me has been yoga twice a day with Pranayama breathing. I've found that the various poses combined with the heavy forceful breathing produces a lot of mucus. I usually stay in one pose long enough to cough up as much as I can. Unfortunately as of lately I've been rather worn down so I have not been doing much exercise unfortunately. Hoping to force myself into good habits. I am mainly just interested what has worked for you and whether or not you see other kinds of medical practitioners outside of the CF clinics. Thanks for everyone's input!

 

[Dank]

I was really hoping some European folks would reply with how their CF clinics handle treatments and lifestyle changes. I'm always hearing about awesome researching coming from that region of the world and would love to hear about how the clinics there work..

 

[mamaScarlett]

My C doctor is extremely supportive of holistic treatment in conjunction with medical treatment. She even has acupuncture, massage, ect treatments for in hospital patients. She always suggests natural type treatments at the first sign of a cold or virus in addition to our arsenal of medical weapons as needed.

 

[imported_Momto2]

I have combined holistic medicine with western medicine for the last decade+. What I have found is that you have to be very analytic and critical, just as you would be of any medicine. Mostly, the herbal combinations were useless, but not overtly harmful. THere was ONE concoction that was AMAZING for preventing vomiting when I had the flu- nothing else worked. Massage has been a godsend, acupuncture generally useless (for me). Cranial work when performed by someone VERY good was helpful, useless by lesser practitioners. The most detrimental part of the whole thing though was certain people telling me they could make me so well it would be like a cure.......you know how the human brain is, you want to grasp on to hope and believe. Well, I backed off a bit with taking care of myself in the regular ways because I was spending SO much time and $ at the holistic clinic. Overall result, my health tanked. I regained some of it, but have never been back to where I was and its only been a slow downward slide ever since. I cant get that back. So, beware, be smart. I still do massage, but am very leery of other stuff now.

 

[believingjesus]

I recently sent my son Acidophilus and Fish Oil capsules. He also has been taking Turmeric for a couple years. These can not affect the medicines he takes, right??? He takes Tobi, Pulmozyme, Creon, Hypertonic Saline, Seravent and Proair and the new vitamins he gets with the Creon. He still has over 100% lung function as of his appointment a couple weeks ago. Please let me know as I have been wondering. Thanks!

 

[Helenlight]

Two things that I think are important to add to the routine for PWCF are broad-spectrum probiotics (maintaining good gut flora is so important for a wide range of reasons) and DHA oils which PWCF are specifically lacking. I think it's great that you are getting benefit from the pranayama breathing, I'm going to be getting my daughter to try this when she's a bit older.

I think you'll find that clinics in the UK, Australia, NZ etc are very similar, because they share information and stick to a best practice code. It's true that the healthcare system in the US has some pretty bad things about it, but in terms of care for PWCF and the advice you'll get - it will be the same anywhere. It's up to you to research and ask about (sounds like you are already) nutrition, different exercises, and potentially things that help your body kill bacteria and fungus. You have to be very careful with some of the lesser-researched things, but this forum is great for finding smart people who have tried different things with varying results. One of the major important things is that the health of the 'host' is of paramount importance as to how well you are and how hard you can fight, so diet and exercise is crucial. Doctors may tell you to eat as much high calorie food as possible (which is mostly true) but most will not tell you anything about the importance of quality food. There is a big difference in eating a pile of junk food for the calories, and eating natural foods that are full of nutrients and high quality fats (like salmon, avocado and coconut oil). Junk food (which the US is so unbelievably full of) causes inflammation in the body, which is something you want to avoid. The same goes for simple sugars (soda- ugh!).

The thing is- questioning is a good thing, within reason. Don't be all against allopathic medicine, and for 'alternative'. Don't lump all doctors together, all pharmaceuticals... each case is different. If you look at how badly PWCF were doing before the current medicines and therapies were found, you'll see how important they are to do. BUT, each person is different, and some medicines don't work for some people (my daughter is allergic to some ABs and most of the nutrition supplements), so questioning helps to weed out what is not working for you. Look at how the approach to inhaled steroids has changed! In the latest CF Patient Registry document they warn against chronic use of inhaled steroids (unless necessary), when up until recently they were prescribing them with abandon. That's the latest thing I'll be discussing with our doc.

Just keep collecting information and you will find what works for you. You are in control of your own journey. Try to work with your doctor and team in a positive way

 

[Helenlight]

Also wanted to add: We're from New Zealand, my partner (carrier) is from NY, so we look at the differences in healthcare all the time. The thing is- you have to be a citizen or at least permanent resident of the country you are considering to be eligible for healthcare. We are very lucky that our daughter gets the vast majority of her care for free.

And I also want to add: I hear your frustration and feel your pain. It's so hard being roped into doing what you're told when it comes to your own body (or your beloved child's). That you have to trust these people just because. It's so hard, but it's no-one's fault that you have CF, or that my daughter does- but I feel so lucky that we live now, with the therapies that are available, compared to last century. Sometimes we just have to suck it in (literally!) and do it, do the very best we can with the information we've got. It's all anybody can do.

You're doing great. You're working so hard, and you've even got the strength to want to do better. That's pretty darned amazing if you ask me, and we're all out here in support, we're all in it together. keep us updated

 

[ethan508]

If you don't like to blinding accept medications without further research the CFF does publish studies and guidelines that they used to developed treatments. These are very well designed studies, N is large, with references sited. They are double blind and use a placebo control group. Here is a good example:
http://www.cff.org/UploadedFiles/tr...for-Maintenance-of-Lung-Health-AJRCC-2007.pdf


The group of studies that is a little weak is those on airway clearance, but due to inertia, a true placebo controlled study looks unlikely.
http://www.cff.org/UploadedFiles/tr...ry-Guidelines-Airway-Clearance-Techniques.pdf


I'm not saying that this holistic care or alternative medicines are not something to look at, but if you won't blindly accept western medicine, then you probably shouldn't blindly accept alternative medicine either. I'm not sure why this is, but oils and herbal supplement studies never seem as well designed or placebo controlled (maybe I’m looking in the wrong places).

 

[Dank]

I wanted to say thanks to everyone who replied. It is wonderful hearing the different experiences that everyone has had.

believingjesus, from a few of your posts you seem very...overprotective. Reminds me a lot of my mother, trying to shield and shelter me from the harmful world which I just rebelled against at every turn. You can always ask your doctor those questions, they should be able to tell you. I have not had a huge experience with noticing the effects of any anti-inflamatory herb - not like I can notice if i take ibuprofen. I would imagine that it would take a lot of dose of herbs to equal the concentrate that the ibuprofen is, and I'm not certain which is worse for you overall. I don't take ibuprofen often, only when I'm beat down.

Helen - thanks so much for your reply. It's great to hear about different perspectives. I think overall you're right about diet and keeping the host body healthy. I have found that keeping my mood light and positive has kept me the most healthy overall. Second would come nutrition. Since I've been in this relationship with my lovely girlfriend we have been eating incredibly healthy. There's only one person we know, and its my girlfriends best friend that eats better than we do. We try to incorporate fruits and veggies into our lives, and only buy organic non-processed food. It's very rare that we have non-fresh food for dinner, or we go out. We don't drink soda or put unneeded chemicals in our bodies if we can avoid it. We will have a beer once in awhile, that's probably the worse we ingest. I do however manage to eat a lot of protein bars (Cliff bars) across the day. It helps to keep the weight up, and the prednisone gives me an incredible appetite, so I try to keep it sated.

I think I should better explain my mindset here, because I think people are taking a few things out of context. I'm not completely against anything. I try to keep an open mind to every form of science or medicine, including holistic herbs and chinese medicine. I think overall you're completely right - it's going to take a balance and dedication to find what works best for me. The main problem I have is that it's a struggle to find all of this information myself and to find a good balance. I am as stubborn as I am analytic minded. So here's the facts that I have figured out. None of my gene-types have been entered a study for any of the nebulized meds that I have been prescribed. The one can't get filled due to some assistance programs lacking (i'm still looking into the one that you PM'd me, thanks again for the info) and the other is HTS. I have noticed a small impact of HTS, so I have resumed taking the medication in hopes it'll open up my airways. Everyday I feel my chest becomes tighter and I'm not doing enough. There's a balance between wearing myself out and exercising, and I have not quite found that balance. I did however manage to go indoor rock climbing a couple weeks ago, so I at least have that positive influence in my mind to keep me going.

I think the key point with this post is that, I'm struggling to find a balance between what the doctors tell me (they also think I'm a 2/10 of compliant) and what I feel is the best for me. I also have not been seeking additional resources because I'm not sure how to pay for them or how to manage to find what I'm supposed to be looking for in alternative medicine. It would be ideal to have a CF doc and an alternative doc, to each work with me to find what works best to help keep myself healthy and reduce the amount of mucus in my lungs and sinuses. I have not found that balance, and it becomes increasingly difficult to do so with working full time and needing to focus on trying to better my career and life. I just feel like there aren't enough hours for mental wellness, physical rest, and physical exercise when you factor in work. I want to enjoy my life (and I do, mostly) but I also want to have a fulfilling healthy life later down the road. Right now I'm struggling to believe that i'll be healthy at all at this rate. I have no motivation and no idea where to start. Luckily this forum exists and there are tons of people in similar positions or who have similar mindsets and trying to better themselves. Its very difficult to keep myself moving. I'll find a balance.

I was just wondering if there was a place on this planet that focuses more on the health aspect of life, not so much on narrow minded thinking. If there are alternative methods to treating fungus and bacteria, why not suggest those options to me and allow me to explore? I just wish things were a little more focused on the health and wellness of the individual, and not so much in the workforce. I thought moving out of this glutton of a country may solve some of those problems, but i'm not so sure anymore. 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...

What sparked this was my lack of direction, guidance from my CF clinic, and my lack of personalized health goals. I have seen various clinical studies being done for CF in Europe, so I was wondering how the treatment in europe is different than here. I've heard from a few people though, from Canada and now NZ, and it seems like I may be in the same situation no matter where I go.

Guess it's just on me to find what's best for me. That's basically what it boils down to.