What else do we do/use?

What else do we use/do?

(Last edited: April 14, 2014)

Of course Curcumin and Genistein:

Curcumin with bioperine
AOV brand
3600mg per day
(split into 4 servings)

Genistein
AOV brand
150mg per day
(split into 4 servings)

The list below I actually put together 4 or 5 years ago, not long after J's diagnosis. Since he did really well on on it, I never changed it. For a long time I didn't know which ones were keeping him healthy. Of course we now know Curcumin and Genistein must have played the largest (and possibly the only) part in it. The only ones I notice an immediate difference on are Curcumin, Genistein and GSE. I am not sure what GSE does. I know why I started it (see below), but I don't know what it does exactly.

Chelated Magnesium
Why? Because a few years ago, a lady called Kim Payne did a major amount of research on it and her son was able to kick Pseudomonas probably because of high dose Magnesium. We just continued to give it in a low dose, just in case)
Solgar brand
100mg per day
(split into 4 servings)

Reduced L-glutathione
Why? Because there was a lot of research on glutathione at that time and I thought if it didn't help, it wouldn't hurt either. The dose we give is extremely low compared to the dose in the recent glutathione studies for CF.
Solgar brand
25mg per day
(split into 4 servings)

I have recently stopped giving Glutathione. The reason is this: I noticed two children (delF508/delF508) not gaining weight on Curc/Gen. Both were also using high dose glutathione at the same time. After researching possible interaction between Curc/Gen and Glutathione, I found this article, which is not about two supplements, but rather about the binding of Curcumin as a supplement to Glutathione present in intestinal cells. I contacted the authors and they agreed it is likely that when taken as supplements at the same time, they might bind to each other, making both unavailable for proper absorption. So if you want to use both, the advice is to take them 1 or 2 hours away from eachother. We were only giving a tiny amount and seeing that one effect of Curcumin is that it raises Glutathione (intracellular) levels in the body, I think we can do without. One child started gaining weight within a week, after starting to give Curcumin and Glutathione 2 hours apart from each other.

Selenium methionine
Why? Because there is research to suggest it's helpful in CF and I thought I'd try. Not sure what it does, but we just continued to give it, since J was doing well with all the supplements.
AOV brand
200mcg per day
(split into 4 servings)

Taurine
Why? Because there is research that says it improves fat absorption from the intestine in CF. Since that is usually a problem in CF, I started giving it and just continued with it.
AOV brand
500mg per day
(split into 4 servings)

Probiotics
Why? To support the health of the intestines and to support immune system (contains lactobacillus rhamnosus, scientifically proven to support health in CF)
Vital Plex from Klaire Labs
found here: http://klaire.com/prod/proddetail.asp?id=V209-10
2 capsules per day 
(one serving)

Echinacea
Why? Because I read it was a good natural product for the lungs. 
Dr. Vogel brand
4 children's chewable tablets a day, containing 1028mg of Echinacea extract
(split into 2 servings)

Vitamin D
Why? Good for lungs and immune system.
see here for example: abstract #298 and #405 (might take some time to load. It's all abstracts from poster sessions of the most recent North American CF conference) http://onlinelibrary.wiley.com/store/10.1002/ppul.22898/asset/ppul22898.pdf?v=1&t=hsomadbv&s=a47c1f30265e3df2ec4d33ad2efba5fccec8735e&systemMessage=Wiley+Online+Library+will+be+disrupted+Saturday%2C+15+March+from+10%3A00-12%3A00+GMT+%2806%3A00-08%3A00+EDT%29+for+essential+maintenance

Davitamon brand
25micrograms = 1000iu a day
(one serving)

Aquadeks (we have used SourceCF for years, but it is no longer available, so we have switched to Aquadeks)
2 chewables a day
(one serving)

DHA
Algatrium brand liquid (from Spain)
1ml a day (= 1 gram)
(one serving)

GSE
Grapefruit Seed Extract (or GSE, but please note it is not the same as Grape Seed Extract, which is sometimes also called GSE. What we use is GrapeFRUIT Seed Extract)
Nutribiotic Brand
10 drops a day
(split into 10 servings, 1 drop in each drink)
I get it from iherb.com

Except for Curc and Gen, which we can't go without, the only other supplement that we have noticed immediate changes with when increased or 'out of stock' here at home (it happens…) is GSE. When we started giving it (while still using the lower doses of Curc and Gen, 600mg and 25mg, we noticed darker and firmer stools. At the moment with the higher doses, I haven't tried changing the GSE dose, so I can't say if and how it influences anything at the moment. I have no idea.

I started adding GSE for the flavonoids it contains, like for example naringin and apigenin, thinking it might help J's health.

What I found later on is that GSE is said to have an anti-bacterial effect also. However there is a lot of controversy over that subject. Some brands of GSE have shown to contain preservatives and some say it's the preservatives that have the anti-bacterial effect and not the GSE itself. The second thing to note is that GSE (like actual grapefruit) contains furanocoumarins (bergamottin and 6,7-dihydroxybergamottin, also called DHB), which may cause interference with other medications. The levels of furanocoumarins will depend on the dose one takes. The only information I was able to find on furanocoumarin levels in GSE comes from this page: 

http://www.pureencapsulations.com/media/Grapefruit%20Seed%20extract.pdf
(note this is not the same product that we use)

Here is a page from wikipedia with a list of medications that grapefruit can cause interaction with:
http://en.wikipedia.org/wiki/Grapefruit–drug_interactions

Nasal Rinse
We also do a nasal rinse every day at the end of the day, with a rhinohorn and Xlear nasal rinse salt. We add 3 drops of GSE to that (hoping that the flavonoids work on nasal epithelial tissue directly and maybe it also has an antibacterial effect)
Xlear ingredients: xylitol, Celtic Sea Salt®, and sodium bicarbonate

Toothpaste with natural anti-bacterial enzymes
We used to use Biotene toothpaste for dry mouth, because I found it contained lactoperoxidase, lysozyme and lactoferrin. Enzymes that normally are part of the antibacterial system in saliva. Due to possible blocked saliva ducts in CF, less saliva is secreted in the mouth, and the antibacterial system might work less effectively than in non-CF. I've also been part of an internet group that did a lot of research into lactoperoxidase, thiocyanates, and lactoferrin in the CF lung. Since there was a toothpaste available with these enzymes and thinking the mouth might also be a point of entry for CF bacteria, (Periodontal pockets as potential sources of cystic fibrosis lung infection by T. Bensel, no abstract available, but read it in European Journal of CF), I thought: "why not?". However, Biotene's toothpaste used to say don't use more than 3 months after opening and it used to have an expiration date on the box. They no longer print that and it makes me uncomfortable. I called the manufacturer and they said it's at the discretion of the retailer to make sure the toothpaste is not in the store too long….. hmmm… I'd rather see for myself how long it's been there, before I buy it. Turns out there is a Dutch product, called Zendium (available everywhere here and at a much lower price) that contains the exact same ingredients. Please see this page for an explanation of what those enzymes do exactly. Scroll down, it's a 4 page brochure:
http://www.zendium.dk/Files/zendium.dk/material/publikationer/natural_protection_of_saliva.pdf

Air filters
Next to supplements we also have air-filters in the living room and J's bedroom by a brand named IQair http://www.iqair.com/home-air-purifiers/healthproseries

Water filters
We use an 'on-tab' http://www.pall.com/main/medical/product.page?id=45154 and a shower head water filter from Pall http://www.pall.com/main/medical/product.page?id=53739

X-Box Kinect + trampoline
We don't do physical therapy or airway clearance techniques, but exercise is of course great for the lungs and the immune system, so we do have a trampoline outside, major amounts of outdoor toys (anything that involves running or jumping…we have it!) and in winter I love using the X-Box Kinect for indoor exercise. We used to have a huge mattress in J's bedroom for jumping in winter as well, with a cover that I'd wash every week. We'd put on some kid's music and jump like lunatics, but after noticing the ceiling in the room below was starting to fall apart (I guess it doesn't hold a whole family jumping in the same spot…), we moved more towards the X-Box. We only have Kinect games, none of them can be played with a remote control.

Hand hygiene
We pay careful attention to hand hygiene, which I think has helped us greatly in avoiding colds and flu. Keep hands clean with hand sanitizer or soap and water, no hands in the mouth, nose or eyes.
It's worth it. Bacteria seem to love CF airways during colds. See abstract #352 from NACFC here (scroll down to 352): http://onlinelibrary.wiley.com/store/10.1002/ppul.22898/asset/ppul22898.pdf?v=1&t=hsjjgny4&s=93c374bc3ede43a61be5b72cddfd0baab6ea0489

IMPACT OF RHINOVIRUS INFECTION ON PSEUDOMONAS AERUGINOSA ADHERENCE IN NORMAL AND CYSTIC FIBROSIS HUMAN BRONCHIAL EPITHELIAL CELLS

"These data begin to explain why initial growth of P. aeruginosa in CF patients has been shown to follow viral infections and why CF patients have more significant clinical symptoms upon RV infection"


No shoes in the house
As we play on the floor a lot, we don't wear shoes in the house.

LAUGH!!
To top it off…. we LAUGH often!!!

Please see the top right hand side for links to other pages or click here:
Our story
Why I started Curcumin and Genistein in the first place
How to start?
What to expect?
Early results
What else do we do/use?
CFTR and Genistein
Curcumin general info