Georgiagirl
New member
I am 46 years old and I have veered off the "regular track" over the years, once my body began to have severe allergic reactions to regular IV antibiotics. I will share a few things that I have learned over the years that may be something for others to consider and to be cautious about in whatever treatment they decide to do.
I have used tea tree oil over the years, however, it is very, very, very potent and should be used with extreme caution. I used to steam with it, however, now I dilute it with an 8 ounce glass of water and add only 3 drops to pour on the shower stall floor before I take a shower. It was also shared with me by a doctor that was concerned with my choice of using the oils, that a patient with CF used essentials oils to fight an infection in their sinuses, which then caused considerable damage to their lungs. So again, use extreme caution and do let the doctors know what you are using!
I began using hs about 4 years ago, however, I cannot tolerate the standard hs made in the vials. It is not the hs that I have a problem with, but whatever is used to preserve it, that is what I am allergic to. My lips looked as though I had had a botox injection!! Anyhow, as an alternative, I use boiled water to mix with the neilmed sinus rinse packet in a half a cup of water (concentrated). It took awhile to find the best concentration for me, one that would be the most effective and not be too harsh to cause any bleeds. I cannot tolerate pulmozyme, after about a week of use, it causes major bleeds. I would say that the hs has been what has helped me the most to keep my pfts above 45%. And also I find it extremely beneficial to be at the coast in Florida, I find that I cough the first day I am there, clear my lungs and the rest of the time I am there, no coughing...even through the night!! There is research to show how hs even began and it was because of observing Australian surfers who had CF that had no progression of CF in their lungs! I'd say then, that hs and the sea-air are a good thing!!
I also take olive leaf extract on a regular basis to strengthen my immune system and help my body to fight against molds, fungal, viral and bacterial infections. I had taken a break from the olive leaf for a couple of months and this last culture I had showed yeast (the first time that I am aware of), so because of that, I am and will continue to take Olive leaf for the remainder of my life!
The essential oils are helpful, but as stated by others here, they are very strong and should not be used day in and day out. They can cause the same effect as regular antibiotics and create resistant bugs. Also many alternative supplements contain goldenseal and echinacea, which are okay to use to help fight a flair up or to get through a cold/flu, but should not be taken on a daily basis. Not only because of the possibility of losing effectiveness, but they can be toxic to your liver. And as mentioned by another post, be careful with humidifiers, yes, they are great to moisten the air, however, that dampness can breed fungus and/or molds. There is also debate about the use of distilled water and it has been recommended to me to boil the water regardless of it being bottled or otherwise.
Hope this gives some help to those that are considering alternative care in combination with traditional treatments. As has been said before, CF is different for each person and what may be a benefit to one is not necessarily a benefit to another. However, we can all make suggestions and learn from each others' experience to try to make the road we are traveling as smooth as possible!
I have used tea tree oil over the years, however, it is very, very, very potent and should be used with extreme caution. I used to steam with it, however, now I dilute it with an 8 ounce glass of water and add only 3 drops to pour on the shower stall floor before I take a shower. It was also shared with me by a doctor that was concerned with my choice of using the oils, that a patient with CF used essentials oils to fight an infection in their sinuses, which then caused considerable damage to their lungs. So again, use extreme caution and do let the doctors know what you are using!
I began using hs about 4 years ago, however, I cannot tolerate the standard hs made in the vials. It is not the hs that I have a problem with, but whatever is used to preserve it, that is what I am allergic to. My lips looked as though I had had a botox injection!! Anyhow, as an alternative, I use boiled water to mix with the neilmed sinus rinse packet in a half a cup of water (concentrated). It took awhile to find the best concentration for me, one that would be the most effective and not be too harsh to cause any bleeds. I cannot tolerate pulmozyme, after about a week of use, it causes major bleeds. I would say that the hs has been what has helped me the most to keep my pfts above 45%. And also I find it extremely beneficial to be at the coast in Florida, I find that I cough the first day I am there, clear my lungs and the rest of the time I am there, no coughing...even through the night!! There is research to show how hs even began and it was because of observing Australian surfers who had CF that had no progression of CF in their lungs! I'd say then, that hs and the sea-air are a good thing!!
I also take olive leaf extract on a regular basis to strengthen my immune system and help my body to fight against molds, fungal, viral and bacterial infections. I had taken a break from the olive leaf for a couple of months and this last culture I had showed yeast (the first time that I am aware of), so because of that, I am and will continue to take Olive leaf for the remainder of my life!
The essential oils are helpful, but as stated by others here, they are very strong and should not be used day in and day out. They can cause the same effect as regular antibiotics and create resistant bugs. Also many alternative supplements contain goldenseal and echinacea, which are okay to use to help fight a flair up or to get through a cold/flu, but should not be taken on a daily basis. Not only because of the possibility of losing effectiveness, but they can be toxic to your liver. And as mentioned by another post, be careful with humidifiers, yes, they are great to moisten the air, however, that dampness can breed fungus and/or molds. There is also debate about the use of distilled water and it has been recommended to me to boil the water regardless of it being bottled or otherwise.
Hope this gives some help to those that are considering alternative care in combination with traditional treatments. As has been said before, CF is different for each person and what may be a benefit to one is not necessarily a benefit to another. However, we can all make suggestions and learn from each others' experience to try to make the road we are traveling as smooth as possible!