I am currently on azithromycin, symbicort inhaler, albuterol , hypersal, pulmozyme. I mix my hypersal with regular saline if I have inflammation, it seems to help to keep it from getting worse with the hypersal. I ordered some Pharmnac , but hasnt came yet. Its going to get expensive if i take it 3x a day. I payed 37 for 1 pack or bottle . They said it has 32 in it. That will last a week and a half .
What else can I take to help with inflammation.
- Thread starter regina65
- Start date
What kind though, unless it is Phytosome or liposomal with bioperine you're probably absorbing a negligent amount. Also remember all brands aren't created equal. Good brands to go by, Jarrow Forumlas, NOW Foods, Doctors Best, Solgar, Source Natural to name a few. I buy from Iherb.com great prices and free shipping over $20. If you haven't checked them out PM me I can give you a $5 or $10 off coupon. Another thing you may consider is Apple Cider Vinegar if you're having extreme inflammation. It also helps with bloodsugar if you have CFRD. Braggs Unfilitered organic is "THE" brand to get. Whole Foods, or Wegmans have it locally if you don't like ordering on-line.
Thanks man I didn't just say that above. It inhibits the P450 Cytochrome 3A4 enzyme first pass drug metabolism. So as long as the drug isn't metabolized by the 3A4 enzyme you're okay. Azithromycin isn't metabolized by it so she'd be fine.
Thank you knowitalll . I will get one of those brand , because I have spring valley brand. I am also taking oil of oregano ( Gaia Brand). I am also taking selenium(200 ) once a day One of them is helping me my inflammation is much better. It gets worse at night before my treatment. It works almost as good as steroids without the side effects . That is awesome . I dont like steroids at all.
Gaia is a good brand as well I didn't mention them because they're normally costly. To do the trick, you need Curcumin, Selenium, small amount of vitamin C and NAC in combination. This combination has actually been proven to have similar effect in DF508 mutations as VX809 drugs.
Get a nutria bullet and blend all the health foods that were mentioned about along with raw garlic, oranges and any other fruits and veggies. The nutribullet helped me out so much. Even got rid of my tonsil stones. I have never felt better in my whole life since using the nutribullet. In a little over a year, I have only gotten sick once and I fought that without any medicine besides blending my fruits and veggies.
http://www.livestrong.com/article/336962-how-to-use-tea-tree-oil-for-pneumonia/ Try this to reduce the inflammation in your lungs. Make sure you are using 100 percent tea tree oil. I got mine at Trader Joes for around $6. I am going to try this next time I am sick.
Cool, raw garlic, I hope you like Burkholderia Cepacia. Also, $6 tea tree oil, sounds Theraputic Grade/ GRAS rated to me. *insert sarcasm here* use too much tea tree oil kiss yourself goodbye. There was a CF'er on here years ago who ended up on a vent because she used too much. Use too little your bacteria become highly resistant. I hope you're a good at guessing! 
I wasnt going to use the tea tree oil because the smell is horrible . I am still using the oil of oregano and turmeric and still waiting on the PharmaNAC.I think the symbicort is starting to help . I read on here that it takes 4 weeks to start seeing results from it . Glad there are people on here that know all this stuff, cause my dr or pharmacists didn't tell me
J
jpatapow
Guest
Raw garlic (already mentioned), Turmeric. Throw it in a smoothie but make sure you add enough fruits to mask the smell and taste of the garlic.
hum.....funny, now that you mention it, it is a little weird that I am almost 28 and never cultured anything but staph. I put the raw garlic in my blender and juice it because it is high in Vit C. You can get those bacteria's from anything. My doctor said there really is no way of avoiding it. Love your sarcasm though! That's the thing about this site, people tend to be very rude for anything outside the box. I have seen a lot of negativity on this site and, im so over it. The site is intended to take notes from others to learn about our disease and further our knowledge. I don't think the site was intended for the peope who THINK they are "all knowing" to give their rude comments. Listen, Im not sick, I live a normal life, but I like to come on here to try to help others. Im doing something right, because I don't take any cf meds. Actually no meds at all. No pain med, no enzymes, no inhaler, ....nothing. I have 83% pft when I don't work out, 96% when I do. Im ddf508, I work full time, go to school full time, and Im a happy person. I would like to better understand this disease, why don't you go check yourself, and your intensions.Cool, raw garlic, I hope you like Burkholderia Cepacia. Also, $6 tea tree oil, sounds Theraputic Grade/ GRAS rated to me. *insert sarcasm here* use too much tea tree oil kiss yourself goodbye. There was a CF'er on here years ago who ended up on a vent because she used too much. Use too little your bacteria become highly resistant. I hope you're a good at guessing!
baseballfrank
New member
kmhbeauty, can you give me your "potion" for reducing inflammation. right now I drink green smoothies every day which include Kale, chard, spinach, collard greens, orange juice, black berries, strawberries, banana, and apple. this concoction does not seem to help with inflammation though. Maybe it is and I would be worse without my green smoothie. I don't know. I struggle with inflammation. I do 3 nebulized treatments a day with albuterol, Dnase. also take symbicort twice a day.
occupyjapan
New member
"You can get those bacteria's from anything. My doctor said there really is no way of avoiding it."
Burkholderia is a plant pathogen. It's often in the soil. It's hard to avoid being around any soil whatsoever, but that doesn't mean I'm going to keep a bag of rotting onions around. "You can get it anywhere, so why even bother limiting potential exposure" is a really dangerous attitude to have. They used to have CF camps where kids with CF would stay in close quarters for weeks on end. This lead to a huge spike in B. Cepacia cases and a lot of deaths. Stopping the camps (i.e. reducing the risk of exposure) resulted in much fewer infections. Your doctor probably said it's ubiquitous in the environment and you took this to mean you shouldn't even bother trying to reduce exposure. You are wrong, if that is the case.
"Love your sarcasm though! That's the thing about this site, people tend to be very rude for anything outside the box."
That's because the vast majority of us are alive because of actual science and not hokey old folk remedies that have been disproved. Let me show you how ridiculous most of this "outside the box" thinking is. Let's compare legitimate science (in this case, the antibiotic penicillin) with homeopathy.
Penicillin works by binding to receptors in the bacterial cell wall and preventing cross-linking which compromises cell wall integrity and leads to bacterial death from lysis due to osmotic pressure acting against the damaged cell wall. We can take a petri dish of bacteria and add penicillin to it and watch this happen via a microscope.
Homeopathy says that if you take a substance that causes the disease you're trying to cure in the first place and then dilute the substance over and over again until very little to none of the substance actually remains and then give it to the patient, it will magically cure the patient because some dude who lived hundreds of years ago thought that two similar diseases couldn't exist in the same body at the same time - an observation that has been proven (with science!) to be false.
Which one of these methods sounds like a good way to cure a disease and which one sounds silly?
"I have seen a lot of negativity on this site and, im so over it."
And we're "so over" quackery and false hope.
"The site is intended to take notes from others to learn about our disease and further our knowledge."
Okay then, here. Let me "further your knowledge": alternative/holistic/homeopathic/naturalistic "cures" don't work and often have severe side effects. That is why doctors don't prescribe them and the FDA doesn't approve them. knowitall was 100 right.
"I don't think the site was intended for the peope who THINK they are "all knowing" to give their rude comments."
I trust science backed up by empirical data, peer reviewed experimentation that follows the scientific method, etc. And it tells me you're wrong.
If your problem is with how the message was delivered, allow me to help: "burkholderia is a pathogen that infects plants such as onions and garlic and you should probably be careful handling those things; also, tea tree oil can be toxic".
"Listen, Im not sick, I live a normal life, but I like to come on here to try to help others."
All help is not created equally and you don't deserve a gold star for offering bad advice. Hey, guess what! Nebulizing pure, industrial-grade hydrogen peroxide will absolutely eradicate pseudomonas infections. Unfortunately, it will also eradicate you. Is my "help" worth defending?
"Im doing something right, because I don't take any cf meds."
I didn't culture PA until I was 15 and didn't have lung problems until I was 28. Some people will culture BCC when they're 4. Some will be so healthy that they won't even get diagnosed until they're middle aged and often over a "side" issue of CF such as digestive problems. CF is not a one-size fits all disease. You are practicing a logical fallacy when you say that your mild disease progression was caused by your "natural cures "THEY" don't want you to know about" treatment regimen: correlation does not equal causation.
"Actually no meds at all. No pain med, no enzymes, no inhaler, ....nothing."
That's because you're lucky. Up until I was 28, I had 120% FEV1/FVC. I religiously did my treatments. If high PFTs are your proof that your advice works, then why were mine higher? I didn't do any weird, naturalist remedies. I alternated Tobi and Cirpo, did Pulmazyme and my vest, etc. Seems like my treatment regiment works better than yours, no?
"I have 83% pft when I don't work out, 96% when I do. Im ddf508, I work full time, go to school full time, and Im a happy person. "
I'm homozygous DDF508 myself, work, etc. etc. Up until I was 28, my PFTs were around 120% (for both FVC and FEV1). See above. Looks like my "normal" therapy trumps your "alternative" therapy if we're basing this on results.
"I would like to better understand this disease, why don't you go check yourself, and your intensions."
His intentions are to not provide false hope or see someone end up hurt, sick or dead. These should be your intentions, too. They should be everyone's intentions.
Burkholderia is a plant pathogen. It's often in the soil. It's hard to avoid being around any soil whatsoever, but that doesn't mean I'm going to keep a bag of rotting onions around. "You can get it anywhere, so why even bother limiting potential exposure" is a really dangerous attitude to have. They used to have CF camps where kids with CF would stay in close quarters for weeks on end. This lead to a huge spike in B. Cepacia cases and a lot of deaths. Stopping the camps (i.e. reducing the risk of exposure) resulted in much fewer infections. Your doctor probably said it's ubiquitous in the environment and you took this to mean you shouldn't even bother trying to reduce exposure. You are wrong, if that is the case.
"Love your sarcasm though! That's the thing about this site, people tend to be very rude for anything outside the box."
That's because the vast majority of us are alive because of actual science and not hokey old folk remedies that have been disproved. Let me show you how ridiculous most of this "outside the box" thinking is. Let's compare legitimate science (in this case, the antibiotic penicillin) with homeopathy.
Penicillin works by binding to receptors in the bacterial cell wall and preventing cross-linking which compromises cell wall integrity and leads to bacterial death from lysis due to osmotic pressure acting against the damaged cell wall. We can take a petri dish of bacteria and add penicillin to it and watch this happen via a microscope.
Homeopathy says that if you take a substance that causes the disease you're trying to cure in the first place and then dilute the substance over and over again until very little to none of the substance actually remains and then give it to the patient, it will magically cure the patient because some dude who lived hundreds of years ago thought that two similar diseases couldn't exist in the same body at the same time - an observation that has been proven (with science!) to be false.
Which one of these methods sounds like a good way to cure a disease and which one sounds silly?
"I have seen a lot of negativity on this site and, im so over it."
And we're "so over" quackery and false hope.
"The site is intended to take notes from others to learn about our disease and further our knowledge."
Okay then, here. Let me "further your knowledge": alternative/holistic/homeopathic/naturalistic "cures" don't work and often have severe side effects. That is why doctors don't prescribe them and the FDA doesn't approve them. knowitall was 100 right.
"I don't think the site was intended for the peope who THINK they are "all knowing" to give their rude comments."
I trust science backed up by empirical data, peer reviewed experimentation that follows the scientific method, etc. And it tells me you're wrong.
If your problem is with how the message was delivered, allow me to help: "burkholderia is a pathogen that infects plants such as onions and garlic and you should probably be careful handling those things; also, tea tree oil can be toxic".
"Listen, Im not sick, I live a normal life, but I like to come on here to try to help others."
All help is not created equally and you don't deserve a gold star for offering bad advice. Hey, guess what! Nebulizing pure, industrial-grade hydrogen peroxide will absolutely eradicate pseudomonas infections. Unfortunately, it will also eradicate you. Is my "help" worth defending?
"Im doing something right, because I don't take any cf meds."
I didn't culture PA until I was 15 and didn't have lung problems until I was 28. Some people will culture BCC when they're 4. Some will be so healthy that they won't even get diagnosed until they're middle aged and often over a "side" issue of CF such as digestive problems. CF is not a one-size fits all disease. You are practicing a logical fallacy when you say that your mild disease progression was caused by your "natural cures "THEY" don't want you to know about" treatment regimen: correlation does not equal causation.
"Actually no meds at all. No pain med, no enzymes, no inhaler, ....nothing."
That's because you're lucky. Up until I was 28, I had 120% FEV1/FVC. I religiously did my treatments. If high PFTs are your proof that your advice works, then why were mine higher? I didn't do any weird, naturalist remedies. I alternated Tobi and Cirpo, did Pulmazyme and my vest, etc. Seems like my treatment regiment works better than yours, no?
"I have 83% pft when I don't work out, 96% when I do. Im ddf508, I work full time, go to school full time, and Im a happy person. "
I'm homozygous DDF508 myself, work, etc. etc. Up until I was 28, my PFTs were around 120% (for both FVC and FEV1). See above. Looks like my "normal" therapy trumps your "alternative" therapy if we're basing this on results.
"I would like to better understand this disease, why don't you go check yourself, and your intensions."
His intentions are to not provide false hope or see someone end up hurt, sick or dead. These should be your intentions, too. They should be everyone's intentions.
haha this gave me a really good laugh, thank you for that. First off, you have wayyyy too much time on your hands. Im not going to take my whole day to respond to your ranting, but ill respond a couple words. You may personally think your "smart" I think your far from it. You will never understand my logic, and I will never understand yours. I believe there is a time and a place for medicine, but its not something you should take like candy (like most doctors prescribe). When I was first dx at 15 years old because I had polyps in my nose, I started seeing my first cf doctor. I did not have any lung problems, I had some digestive discomfort, but I was a healthy weight. I am currently 5'7 in height 150 pounds of mostly muscle. At the time, I had not cultured anything. The doctor prescribed me enzymes and to inhale tobi. At 15, I thought this doesn't make sense. Why I am having to inhale this medicine when my lung function is great and I don't feel sick. To me, it didn't make sense so I chose not to do it. My doctor later said it would have done nothing for me because I had never cultured the bacteria that Tobi kills (to this day still have not cultured). As far as you talking about wanting to avoid things that may cause harm. Duh!! My doctor has never said "hey, don't consume raw garlic in a blender because you will contract bacteria in your lungs" So far Im doing really damn good, even better after I read your post. Your comical buddy, you really are! I will admit I am not "all knowing" my knowledge is based on my opinions, just like yours. Its called an opinion!!! You may have medical research behind your knowledge, but that doesn't mean you are right. You know what I am right about, my own body. You know why??? Because it is my body!! Thank you., I will handle my body the way I feel I should because I know how I am feeling. As for yourself, handle yours the way you feel you should. No matter what, Im still going to have an opinion of what works on my body, and Im still going to give my opinion! Thank you for giving me yours, but I don't listen to people like you. Next time save your breath for the weak minded, and be lucky you didn't say your opinion to my face, and only on a message board! Have a great day buddy