Alternative Treatment by Bryan August 26 2016-

[Imogene]

From Bryan on August 26, 2016

Okay, definitely need input from others with CF on this one.


Since I was diagnosed in March of this year, everyone I know has given me “advice” on treatments.
Apparently Cannabis Oil can relieve chest tightness and magically make my mucus plugs go away. (I doubt it)
I’ve been told once I become vegan, most of my symptoms will disappear.
A Naturopath has told me once I take her blood tests for food allergies, most of my symptoms will vanish.
A Medical intuitive my friend swears by said he knows I simply have a Bisphenol AToxic plastic buildup in my body.</span>

A well meaning friend says Turmeric 3 times a day and BOOM, symptoms gone .


Printer:

Bryan:
Welcome to our world. Just remember that these people mean well.
Bill

Ratotosk:



I know some people swear by certain diets — anti-inflammatory, or avoiding certain foods, taking certain supplements, probiotics…. I get concerned though when people want to forego modern medicine in favor of oils or supplements that may or may not be regulated or that could lead to health issues.
I once had an aunt by marriage tell me smoking weed cured her asthma. And while there are some medicinal benefits — marinol is prescribed to help increase appetite, I wasn’t about to have my at the time 2 year old child smoke pot.


I could go on, but I think you all get the point. Has anyone actually had relief or results with alternative treatments?

Kenna2:
You need to remember that everyone is made differently. So what works for some people might not work for others. Sadly this can be frustrating and things have to be done by trial and error. Don’t be so quick to shoot down others ideas.

Ratatosk:
think what concerns me is when parents of newly diagnosed newborns, concerned with all the medications their babies are on, start looking for natural solutions instead of antibiotics, bronchodilators, etc. — a few years ago there was talk on this site of nebulized colloidal silver, more recently nebulizing essential oils. IMO, see what works for you if you’re an adult, but on teeny tiny babies… not a good idea.

LittleLab4CF:

We tend to forget, or aren’t aware that most mainstream medicines and therapies came out of the shaman’s medicine bag. Aspirin, a drug that is still current and safe, is straight out of the bark of the Willow tree. CF is a near perfect genetic disease to do drug research because of its single gene cause. In most cases it’s a pair of genes, one from each chromosome, but it doesn’t seem to involve multiple genes like most genetic diseases and syndromes. We are so lucky to be the first to see true genetic drugs. Nothing is impossible now.
Or is it? Kalydeco is a true genetic modifier. It works its way to the cellular nucleus, strips off errors from the gene and replaces them with the working DNA base. Orkambi, the latest drug is Kalydeco and a highly bio-available curcumin or something like tumeric. Go figure.
CF is serious and with ~35,000 of us in the U.S. it’s not likely that anyone you know actually knows how to treat it. I’m assuming that you’re set up at a CFF accredited center. Get your advice there.
I’ve been part of the holistic health world since the late ’60’s. I’ve had my fill of wheat grass smoothies and acupuncture. Our general mucus expectorants, sinus rinses and such aren’t mainstream. As you get your head around this new diagnosis, stop soliciting advice, you have your diagnosis now. It’s not easy to change the behavior of medical detective after 40 years of experience in bull crap from mystified doctors.
It’s not uncommon to need time getting used to new shoes, try not to ask if they fit, good luck!
LL



Windex125:
LittleLab4 I’m confused with yr. post?? can you break it down for me? Are you saying don’t post asking for alternatives? We know the main problem use yr. CF center as yr. source of information & medications? I see we are close in age I will be 62 in December what meds work best for you? What is yr. sputum growing? or does none of this matter anymore? I know I post occasionally if I feel I can be of help with my own experiences, or reach out to others if they hv used a certain drug that I need some input about, last can you explain the shoe statement.

pinkfrog:
the one thing that amazes me on this forum is how old you all are. my daughter is 23, healthy and happy, with f508del and diabetes with a life expectancy of mid 30’s. we live in ireland, are we really behind with our treatment??

welshwitch:
Pinkfrog, I’m 36 with a normal lung function and my doctor says that the next 10 years should be pretty smooth for me health-wise. But, I live in the United States.

Pinkfrog:
We live in ireland. the average life expectancy, although increasing with new meds is still low, 35/40, with many dying younger. i was told when she was diagnosed at 1 1/2 her life expectancy was 12! i know people in the usa with cf, and often wonder if we should have moved, we dont have the vibrating vests, the kalydyco has not been passed (too expensive) and only in the last 5 yrs we get the first speciality cf ward in Dublin (capital city) maybe in the usa she would get a better quality of life?

 

[Imogene]

LittleLab4CF:
LittleLab4CF

Windex25, Bryan and all of you young CFers,
I admit, this wasn’t one of my more coherent contributions. It does sound like I am shutting Bryan down and suggesting he not be looking for information and advice on alternative medicines for the treatment of CF issues. Several thoughts were circling through my mind at the time I read Bryan’s post.
The unenviable situation of evading diagnosis for a long time has an effect of turning most people into medical detectives. Bryan is talking about everybody offering their two cents on just how to treat this generally incurable genetic disease. He isn’t soliciting advice here but if he’s true to most people on a quest for a diagnosis or a cure, lacking a diagnosis that fits all the lands and grooves, he has probably complained about certain health issues that usually came back with a good sound board at best and bad advice at worst. Those same people are responding to his diagnosis.
For those of similar age to me, chances are good that some time in your lifetime you’ve either been victimized or know some poor person, or family who has fallen prey to medical hucksters promising cures where none are to be found, especially outside of regulated medical circles.
My first serious girlfriend at university went through the sorrow of watching her father die from fairly rapid progression of MS. Insurance normally wouldn’t pay for the repeated segment by segment, limb by limb amputations so the family traveled half way across Wyoming to the VA hospital. A Foot, lower leg, another lower leg, part of an arm and he died mercifully on the table, having the remainder of that gangrenous arm amputated.
One time we were walking around town and she realized we were in front of the very house that the last of the family assets went for a quack cure. My feelings may be running overly deep when it comes to the lunatic fringe of alternative medicine where the fight is ended by the removal of the last of your fighting money. I remember posting over the question of Himalayan Salt pots and such. The price wasn’t prohibitive and though I honestly can’t see advantage over nebulizing saline, it was a harmless device that didn’t break the bank.
Most people know that I reel whenever colloidal silver comes up. Granted, silver has been used and is still used as an antiseptic. Copper is a lot cheaper and does essentially the same thing but there’s no great mystery or profit in copper. The colloidal bit of the product is what gets me going. Colloidal particles or clumps of atoms too large to go into solution and therefore too large to become a toxic heavy metal or it acts like a catalyst because it remains unchanged is pretty sketchy stuff . Touch almost any colloidal metal against the body and the colloidal nature of the silver is shot. Our salty sweat is highly reactive and silver loves to be a metal salt. My old software engineer of years back probably still has colloidal silver in his garage from some pyramid scheme.
At the same time, I’m not one for throwing the baby out with the bathwater. Another thought that has been bothering me recently is this gap between holistic, natural, alternative and the whole supplement world and conventional medicine. Anybody who reads the history behind our modern medicine knows that virtually all conventional medicine has its origins in “Alternative Medicine”. Like the old Movie “Medicine Man”, pharmaceutical companies have been trekking through jungles and aboriginal peoples in search of their Juju for thousands of years. Look up the great doctor “Galen”, a Greek physician circa 170AD who performed successful cataract surgeries, removed kidney stones with pomegranate juice or surgery. He practiced sterile technique and pioneered medicines we’ve been using since. Our Dark Ages did prove that when society and infrastructure breaks down, ignorance and superstition rushes right in. I respect that we get most of our medicines from the analysis of an herb or such. Medicine in part is the art of separating and analyzing an herb or natural substance that people have discovered helps some condition. We have more often removed alkaloids or other chemicals in a plant source that would render the herb unusable in appropriate strengths because of the side effects of non-useful stuff in the plant come medicine. We have on occasion, tossed away complimentary components and here alternatives have come to our rescue. The big Pharma companies are such mercenary blood sucking giants with all the morals of an AIDS virus and alternatives are often good enough to keep them humble-ish.
I wish I could tell you why there are so many old foggies on the CF site. One could get the idea that we aren’t as sick or that we know how to beat CF. Most of us do have milder or what I could say less lethal CF. I know more than I should about one of our more senior CFers and I can say, he definitely knows how to beat CF, or more likely is just a lot stronger than the disease. His sputum is remarkable to say the least. Most people would drown in his daily volume of expectorated phlegm. For me, CF seemed to arrive in a serial fashion. My lungs were pretty well scarred by the time I was 10. It left my lungs and concentrated on my GI tract. GI dominant CF is still deadly but it is obvious that our bodies demand a quality of respiration that digestion doesn’t.
My personal theory is most CFers that are within that under 40 lifespan are generally too sick to really care to contribute. For a long time, we had mostly younger CFers. The most common posts were complaints that needed some validation. A bad experience in the hospital or such is both good and bad. If a person is well enough to realize the lack of care, they’re better off than a patient too sick to care.
Most of my life, I wasn’t constrained by CF, and wasn’t diagnosed. By the time I was diagnosed, I was at that point where getting up another day was optional. God I was sick. At the time some idiot pharmaceutical company had come out with a narcotic sucker. I had a sucker in my mouth most of the time. These sugar loaded bombs relieved the pain and was running me about $2000/mo in dental bills. Before I realized that the sucrose in the Actiq suckers were promoting tooth decay on a wholesale basis, my dentist and I had a little end of life discussion. We could keep crowning my teeth or he could reduce the expense with fillings. The point was, my doctors had me pegged for a short end to my life and there seemed to be no point to something intended to last a decade or more. It was that serious and I was happy to say goodbye to the world.
We old CFers tend to forget that the vast majority of CFers are young, most posts were parents of young CFers, or young CFers themselves. We may have a bit of survivor guilt, maybe more than a bit, but we are the old ones who have dealt with therapies you wouldn’t want today, we have advocated, donated, educated ourselves, sometimes our doctors and hopefully can share some experience with younger patients.
Hope that helps clear up some of the confusion I started.

LL




Who said your daughter’s life expectancy was in the mid-30’s? Or is this just a general statistic based on her age?
One thing that has taken me a very long time to understand is that everyone’s bodies process this disease differently and so there is a wide variety of outcomes with CF.
There are lots of people on this site in their 50’s, 60’s, 70’s and even 80’s.