Pharmacutical vs Herbal -> Well researched herbal alternatives

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Dank

Guest
Hi Folks,

A quick few sentences about myself and I'll get to my question for the community. I've been through a rough life, some self inflicted and some playing with the cards I was dealt. Currently it's mostly all good though, pulled myself out of a ditch got myself into a career with computers and I continue to strive to learn and grow.

I'm 25 cfer - 2 uncommon gene types. PFE is lower 70s, weight is pretty steady, pancreas works mostly.

I'm at this point in my life where I follow what's going on in this world, and most things make me a bit more aware than I was prior to knowing. I'll save my political views for another subject, but the fact of the matter is - although we are evidently getting more enhanced with our abilities as human beings thanks to science and computers - medication seems to be "preventative" but the medication that's supposed to prevent is essentially not be around long enough for me to trust the idea of "take this now, it'll help you later". The problem I have is when compared to herbal remedies, and chinese medicine, it's 100 years or more of research vs. less than 50 years of science and research. The best part about chinese herbalism is the part where science even is used to prove these 100+ yr old remedies. Anyhow I'm not completely against medication - seems like Kalydeco is a wonder drug from what I've heard. Just seems so few and far, I get put on large ridiculous doses of antibiotics and the infection in my lungs and sinuses NEVER goes away. I realized some of this I should speak with my local doctors about, and typically I'm pretty open with them. Sorry in advance for the rant.

So I'm at an interesting point where I'm aware enough not to blindly take medication, but also common sense (and my lack of lung function) dictates that I need to do something to help cure/prevent further damage to my body with my condition. Additionally, I'm at this moral disagreement where I don't want to take more medication than I absolutely have to (meaning I'd like to see what's in the medication, how the effects my body in the short and long term, and clinical research to prove it), and trying to put some herbal supplements in my diet to increase pancreatic function as well as perhaps add some regimens to help decrease and break down the amount of mucus in my body. So I'm fortunate enough to be associated and befriended some sharp minds of my generation who have made their lives and their mindsets to be all about health. I try to be open minded to both sides (medication and alternatives). There's little to no information for my rare genetic types, and less information about preventative measures. With GMO products, monsanto this and that, less ability to prove that things wont have a longterm effect on you; it becomes more evident that I'm completely and utterly lost with my diet and how I'm supposed to care for myself and my illness.

I feel as though the country is going to shit day by day, and I'm fortunate enough to live close to Johns Hopkins - and unfortunate enough not to know any languages to potentially move to another country who could potentially have better medication on the market...

So let's discuss, does anyone do anything that you can recommend that helps with their airway clearance, or helps with your pancreas? (If you're lucky like me and yours still works..)

Does anyone have any experiences with any sort of herbal treatment (such as goldenseal?) that helps with sinus, mucus, or pancreas?

Anyone tried accupuncture? How do you feel that helped?

Hot yoga?

Anyone had experience with having higher PH intake for mucus and acidic levels?

Anyone been to any other CF center around the world? What's different? Where are the best centers?


Mutations:
1) 2183aa > G
2) S945L


I'll reply back with what I decide to do, or how my diet is changing, but figure I'd submit some questions for some feedback. Thanks!
 
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triples15

Super Moderator
Hey Dank,

Sorry, I don't really have much to offer regarding your question. I pretty much stick to the traditional medicine route and haven't really tried anything alternative, although I've certainly considered it. Hopefully you get some good replies. One thing that I have really been thinking about trying is PharmNAC by Bioadvantix. It's basically drinking acetycysteine, which I already neb (when there's not a national shortage). There is a lot of info out there about it reducing inflammation etc.

I really just wanted to say that I also have S945L and I am going to Denver next week to be screened for the Kalydeco study on residual function mutations (which includes S945L). Vertex is paying for travel (hotel/flights or mileage/food) plus a stipend. I REALLY hope to get in! The study filled up a few months ago but the research coordinator contacted me to tell me they are enrolling a few more participants. If it is something you would be interested in let me know and I'll give you her contact info.

Good luck to you and take care!

Autumn 32 w/CF
 
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Dank

Guest
Hi Autumn,

Sure if you wanted to forward the information along that would be great. I'm looking forward to other replies.

And best of luck to you also, stay healthy!
 
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running4life

New member
While I don't know if this is considered alternative, I have begun incorporating anti inflammatory foods into my diet including cinnamon, turmeric, fresh ginger, and fresh garlic every single day. I saw a significant increase in function in 3 months - 86%-95%. Also, I do hard cardio almost daily: swim, cycle, and run. I also do Insanity videos on occasion and lift heavy weights. I walk my dog 1-2 miles a day. I drink a TON of water - 1-1.5 gallons. I take Mucinex 3-4 x a day. I do the vest 30 minutes with HTS and use the Acapella as well. I think the importance here is on my diet though - very low on refined sugar as well. I can literally feel the inflammation in my lungs when I eat high sugar foods. I do have CFRD as well.
 
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ymikhale

New member
I have my dd follow the same type of diet as well - by conviction mostly. Can't say i see improvement clinically, she has hyperactive airways so it is hard to tell. Her x ray this year was normal for the first time but it is hard to attribute it to diet- she has been on it for several years and i guess we would have noticed changes sooner if the diet was the reason for improvement.
 
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scarecrow

New member
As I understand it the 2 things that cause problems for us and for most people really, just worse for us, is inflamation and build up of mucus from being too thick. It seems like the 2 things pretty much go hand in hand to the point that it is hard to tell which is the cause and which is the effect.
The good news is that there are some very positive things that we can do to help both of those problems. One of the biggest problems is cost. Especially if you are on disability. Insurance will pay thousands of dollars for medicine that may or may not work and will certainly have some pretty nasty side effects, but because nobody can patent an herb or even just a change in diet nobody will pay for it. That's why it took so long for this country to accept HTS. They were using it for years in England before they started using it over here because it was so much cheaper than all the other treatments. But no need so go off on a rant, I'll save that for another day.
Basically, if you can use something like PharmaNAC or Cellgevity to increase your Glutathione levels that will thin all the mucus in your body along w/ a host of other good things.
Then if you can get down the inflamation in your lungs w/ lots of water, very little sugar, Ibuprofen, Turmeric or Circumen, Garlic, Cinnamon, and probably a lot of others that I have missed.
These 2 things together will do a lot to not only improve how you feel now but to keep any more damage being done to your lungs. And please take these words of wisdom from someone who wishes he had heard them before it was so late in the game, do whatever you can to protect your lungs. Think of them as your children and do everything in your power to keep them safe. That doesn't mean just doing everything that a doctor tells you to do. Remember that if a Dr. gives you advice about a NON FDA treatment then he takes all the responsibility for what happens to you onto himself. I don't blame them for refusing to give out any alternative advice I just wish they would make sure that people realize that there alternatives that, in many cases will work much better and w/ fewer or no side effects.
 
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Dank

Guest
I appreciate all of the feedback. I will take a look into any anti-inflamatory herbs I can find, and add that into my diet! Has anyone tried Goldenseal? I've read some mixed reviews, but not any research/opinions in regards to CF. What's HTS? (Short version is acceptable).

Also running4life: You have an insane workout schedule. I can't even contemplate that, I can barely find enough energy to make it to the gym to swim a few times a week!
 
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running4life

New member
Dank, HTS is hypertonic saline. Inhaled salt water basically. Helps thin mucus and cough makes you cough too.

Workout schedule has taken some time, just do a little more each time and rest a lot. Working out has kept my lung function high. It's my medicine really.
 
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epicurus

New member
I agree with Scarecrow, for me the secret to regaining my health has been to improve my glutathione levels (using Cellgevity).
My health strategy is entirely natural now, and includes an anti-inflammatory paleo diet, garlic, oregano oil, probiotics and hypertonic saline. I have avoided antibiotics for a long time and my lung capacity has now increased to 100% predicted, which I never thought would happen in my late thirties!
We have to do what we can to help ourselves because the doctors can't do it all for us.
Wishing you good health :)
 
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Dank

Guest
I've taken it before, just it didn't register to me that it would be called HTS.

My plan is this:
HTS in the AM, HTS/Dnase after work, swim. Adding a shake twice a day (brown rice protein, chocolate, maca, tonic alchemy) and aquadeks 2tabs a day.

I'm in the low 70s fev1 - so I'm thinking if I stick to this, I can see the mid 80s. We'll see how it goes.

Also want to work on adding more water and more of anti-inflammatory herbs/spices.

Thanks for the input, everyone.
 
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Epona

New member
Hey there Dank. I've been working on improving my health through diet and herbs for a few years now. I have discovered a few things that may be of interest to you. I am currently seeing an herbalist, which I would highly recommend, or at least a naturopath. I will be going to herbalism school soon so I'll have a lot more to offer you in a few months. But to start there are several herbs I take regularly, mainly a tincture of red reishi mushroom, baical skullcap and astragalus. This mixture is to reduce inflammation, boost the beneficial side of my immune system, and help me fight infection. I also take a curcuminoid extract (from turmeric), which is actually a CFTR regulator as well as an anti-inflammatory. I eat garlic as much as possible, as it is one of the most powerful antimicrobial agents out there. Studies keep proving how incredibly effective it is against viruses and bacteria, including MRSA (which I am having trouble with). Usnea lichen is a very powerful antimicrobial as well, and you can pull it off trees in your local woods and eat it straight up. Load up on vegetable (and low-sugar fruit) antioxidants as well. I could go on and on, but it would be more efficient for you to just visit my website to read more - www.cfnaturalhealth.weebly.com . In particular you'd like to check out my section on Supplements and Herbs. Be well.
 
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Dank

Guest
Wow Epona! You are a wealth of information! Thank you very much for your share. Am reading through your nutrition page now. The tincture you are taking is very interesting, I actually spoke to a friend of mine who recommended Astragulus to me. I'm thankful for the information! It seems you have done your share of studying.
 
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