CF Checklist

Sea salt

We began using Celtic Sea Salt the summer of 2005. This has made a huge difference in the health of our mucous membranes. Our sinuses and lungs are much healthier with sea salt (not all things labeled sea salt really are, which is why I provide a link to where I am getting mine). Since mucous membranes also line the stomach and not just the sinuses and lungs, I suspect this contributes to my son no longer needing enzymes. We take this as if it were a dietary "supplement", not just a substitute for other salt brands in cooking. On hot days or under other circumstances where we sweat more, we take substantial quantities -- as much as 2 to 5 tablespoons in one day.

PH balance

I find that keeping our PH balance on the alkaline side helps enormously. We try to eat a little lettuce every single day because that is the best food for doing this. We also sometimes eat corn, another "alkaline" food. It took us a long time to improve our overall PH balance, so just eating lettuce may not be enough. But it is simple and a place to start. See also the PH Balance page for more on this topic.

Yeast

My son realized some weeks ago that he only took his digestive enzymes when we had homemade pizza or when he ate bread. He immediately gave up bread, pizza and all foods with yeast in them and stopped taking his enzymes shortly thereafter. You can find out more about which foods to avoid and how to treat for yeast on various online discussion lists. One I have found useful is Autism-mercury, a group aimed at exploring biomedical treatments for autism and related disorders. I was referred to it in part because both my kids fit the profile for Asperger's. It just so happens that people with ASD (autism spectrum disorders) very often suffer severe gut issues and I have found the autism community to be my best source of information on how to heal our CF-related gut issues.

Chelation

I did 16 months of chelation (removal of excess metals from the body). I am much healthier since I did that. Metal toxicity affects the gut, which is already a big problem for CF patients, and also causes problems with yeast and ph balance, other areas which are big problems for us. Although I have no reason to believe that metal poisoning causes CF, it is pretty clear that it can seriously compound the problem. If you have had any vaccines (and CF patients get a lot of them) or have "silver" dental fillings (amalgams), I highly recommend that you look into getting a hair test and consider pursuing chelation. See also the Metal Poisoning page.

Glyconutrients

I take glyconutrients every day. Glyconutrients can help the body rebuild at the cellular level. Taking them is crucial to my ability to get well. They have a reputation for helping with "leaky gut syndrome" and I have found they help with my gut issues as well as general overall health. Please note that taking them tends to cause a purging effect so, for people who have been very ill for a long time, I recommend starting at a very low dose (1/8 or 1/4 tsp) and gradually increasing it. I started with taking 1/4 teaspoon for the first couple of months or so and even with that was constantly tired, slept more, and had intermittent diarhea Taking a lot at one time can cause pretty severe diarhea. There are times when I do take a lot of it and just accept that I will likely have diarhea as part of the healing process because all this bad stuff has to come out of my body somehow and, really, that is the purpose of going to the bathroom: removing wastes from the body. But when I know I have to go to work and so forth, I keep to lower doses so I can continue to heal without it being a crisis.

Environmental Toxins and Allergens

We have put a great deal of effort into making lifestyle changes to reduce our exposure to environmental toxins and allergens rather than simply accept the answer that we must take drugs all the time. This could be a book in its own right. I guess a short version is "When in doubt, throw it out" and "ditch any product which makes you breathe funny" (for us, this includes all particle board furniture, commercial detergents, many chemical cleaners, many brands of shampoo, and on and on).

We are all in this together

When I was very, very ill, I began pursuing alternative remedies. I began to get better. But, at some point, I hit a plateau and could not make further progress. Eventually, I insisted on treating my kids and husband with the same herbal remedies I was taking. I immediately began to improve. If there is a CF patient in the family, other family members will carry many of the same germs the CF patient has. While it may not make the other family members visibly ill, it is a source of re-infection for the CF patient. If you love them and don't want them to suffer, you must also work to rid yourself of the germs which are slowly killing the person with CF.

Clean bedding counts for a LOT

I now sleep on the floor, on a 100% cotton sheet (white, to avoid dyes), in a 100% silk sleeping bag liner (also white, to avoid dyes). The sheet and sleeping bag liner get washed in hot water with baking soda (rather than detergent) every single day. I react to allergens in mattresses and I react to most bedding and I rapidly get ill if my bedding is not washed constantly. My sons have a similar sleeping arrangement and for the three of us, all our bedding is one load of wash each and every single day. This has gone a long ways towards getting/keeping me and my oldest son off drugs. We spend a third of our lives or more in bed. If the bed and bedding is part of the problem, you will never get well. For us, it has been well worth it to take extreme measures in this area. I hope to some day find a mattress or something which works. If not, at least I can breathe.

Fats and Oils

I am getting more educated about what we need to do in terms of diet. Diet is a complex area and will need to be custom fit for every person with extreme health issues. However, in addition to watching PH balance and eating sea salt, another critical area which makes a big impact is fats and oils. Oils are very concentrated and if I have a very mild problem with a food (like peanuts), the oil will be just horrible for me. I eat organic butter and read labels a LOT. I personally avoid canola oil and soybean oil. All CF patients should avoid soybean oil, since soy is contra-indicated for us.

Vitamins

I take b-complex and PABA (a b vitamin normally not found in B-complex) every day. I take iron. I take co-q-10 in the mornings. (I took a LOT of co-q-10 when I was much sicker and trying to heal.) I read labels and make sure I get vitamins and supplements without all the additives.

Adrenal Support

Someone who is chronically ill ends up with exhausted adrenals, and that can lead to thyroid problems. There are a variety of adrenal support products and various groups online discussing such things (I don't happen to participate in any so I cannot provide a link). I take a product from Mannatech called "Plus", which provides nutritional support for my adrenals. My son also takes this, but less of it because he is healthier than I am. I cannot take iodine supplements because I am allergic to it. Some other things which support the adrenals: Yams (not sweet potatoes, which is a different plant altogether), lysine. According to a friend: "Amino acids are good for adrenal support. Vit C seems to be very important as well, and of course calcium/magnesium." See also: Recommendation Sheet for Adrenal Support (PDF)

Toothbrushes

I soak my toothbrush in hydrogen peroxide overnight to kill germs and I change the peroxide every single day. I cannot overstate how important this.

Burt's Bees Hand Salve

I put this product directly in my nose, usually about twice a day (before work and before bedtime). It helps supplement the function of the mucus membranes there and also helps support healing of those tissues, which are typically chronically infected in CF patients. When my lips and nose are too dried out from constantly blowing my nose, I use it to help heal the skin in those areas. I sometimes use it in my ears when the skin in there becomes too dried out from daily treatments. This entry used to say "Carmex" but I switched in August 2009 when I tripped across the fact that some of the scary, nasty bugs that people with CF get are used by environmental scientists to treat petrochemical spills -- i.e. they eat petrochemicals. Carmex contains petroleum jelly. My sinuses are doing a lot better since I switched.

No Piercings, No Tattoos

I used to have pierced ears. It was a constant battle to combat the infected ear lobes. My son suggested that I simply throw away my earings and let the holes close over. I did so the summer of 2005. For the next several weeks, I had "acne" around my ears very badly. It was clear that it was some kind of purging or drainage. I used to have constant ear infections, worse than my sinus or lung problems. My ears are getting better now that they have had nearly a year to heal from the piercings and whatever contaminants were constantly introduced via my earrings. I have never had tattoos and I do not plan on ever having any. I suspect they would pose a similar health risk for me as piercings did.

Irrigating the sinuses

I still do this periodically, maybe once a week or so. When I was sicker, I did so several times a day. See the Saline Solution page and the Xylitol Solution page on this site for more details on what I did.

Hair

My sons shaved their heads last fall and immediately felt so much better that my son with CF began shaving the hair off his arms and legs as well as his head. They continue to keep their hair very short or shaved and the one with CF continues to intermittently shave his body hair off. I have always kept my underarms shaved daily and have long preferred to keep my legs shaved, but didn't realize there was any reason for this other than vanity until my sons "discovered" the impact this makes. At the urging of my sons, I cut my hair quite short and I also now shave my arms. My kids also use a dandruff shampoo, something I began doing recently. I can't explain why this all helps. But it does. My hope is that in a few months I will be able to have slightly longer hair without it being a health risk. In the mean time, I am just happy to be healthier.

Carbonated Beverages

My son drinks a great deal of diet sprite and I drink a great deal of diet coke. I do have friends who routinely inform me how "bad" sodas are. However, when we have tried to give them up, we do worse. (On the other hand, as I continue to heal, I generally drink fewer sodas than I used to -- and not because I try to curtail my consumption. Often, my son notices that I am going through the sodas at a slower rate or it becomes apparent when we are making a shopping list.) I strongly suspect that the benefit comes from the carbonated water. There are other carbonated beverages out there aside from colas and I know of people who have used non-cola carbonated beverages to help them cope with other gastro-intestinal issues.