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breathe22
06-12-2008, 01:26 AM
Have a newborn with cf,pancreatic sufficient,no symptoms. Wondering if Aromathereapy or essential oils have been helpful for anyone with cf. I am reluctant to start my child on saline neb treatments as a preventative measure since he has no symptoms. Any advice would be so helpful.

BrigitsMom
06-18-2008, 06:57 AM
I also have an infant with CF. She's just over 6 months old - how old is yours? She has not developed any lung issues but is pancreatic insufficient - no function whatsoever. Are they actually trying to put your child on a nebulizer with no lung issues? Weird. I'm a just-say-no to western medical perspectives kind of mom, so this is going to be a challenge for me. If you're looking at aromatherapy, then perhaps your perspectives are alternative as well. I do know a bit about oils. If you can find therapeutic grade oils you'll eventually be able to use them more directly, but for now you should only use oils on your own hands and hold your hands over the area you want to work on. I am a distributor for Young Living Essential Oils, but have only just renewed my distributorship - I want to research the same thing, how to use oils for my daughter. If you'd like to keep in touch with me I can share with you the information I research as I go along. Young Living has a blend called RC which is for respiratory issues. Other oils will be beneficial as well. Look forward to sharing info with you.

Chaggie
06-18-2008, 04:43 PM
CF is all about prevention, the sooner you start meds the longer she will be without symptoms. Saline is the lest medicinal treatment out there and as a preventative is probobly the best, it hydrates the lungs so the mucus can move so there isn't buld up.

There are alternative therapies out there, but they should be seen as complimentary to more traditional care.

BrigitsMom
06-18-2008, 07:13 PM
When it comes to inhaled substances, I'd agree that the hypertonic saline is probably about as good as it gets in the western realm and I would certainly use it if Brigit shows signs of developing any problems at all - if her doc will allow it (it seems they have a different set of rules for infants). I've started using something (on my own) called Mucolyxir (salmon DNA) and her mucus is noticeably looser, now I can get it out with a syringe where before I didn't notice any at all. Another thing I've been researching is an ayervedic herb called haritaki which is showing great promise in being able to kill pseudomonas. Her doc has give me permission to use it. My goal is prevention of pseudomonas.

breathe22
06-18-2008, 08:46 PM
They have not put my son on saline neb treatments but I know it will be coming up in the next couple visits. I am all about trying to keep him as healthy as possible. How do I learn more about Mucolyxir and haritaki?

Chilemom
06-18-2008, 09:35 PM
i think both medicine are complementary,and that is the good thing, and they donīt disturbe each other.
i give to my daughter anthroposophy medicine, and i trully believe in it. I have two doctors one traditional, and the other is doctor, but she just gives this alternative medicine.
The fist day that i went to see her, a month after my daughter dx there were two things that make me fill that i was in the right place: first of all how she observe my daughter, and give me her diagnosis without looking any exam, actually she was the first one in telling me that my daughter was pancreatic insufficiency, just by touching her head she realized that was hotter than the normal and that was because she has problem with her digestion. The second thing that makes me believe in this for cf is that is a preventive medicine, just what you need when you have cf.
i give 8 different little pills three times a day, and if she has a cold or something i give some of them one more time.
Also i am really concern on her feeding: nuts, avocado, fresh milk, and other thinks like that.
i donīt know where you can find this things in your city, but if you search Weleda.com you can learn more about anthroposophy medicine.
hope it helps you,

From Chile
ps: Omega oil is really good for kids, and i donīt know how exactly but coco oil doesn't need the pancreas to be absorb

BrigitsMom
06-22-2008, 06:29 AM
I'm giving Brigit Mucolyxir on my own - her doctor doesn't know yet, but I'll tell him at our next visit. I have found the following websites that have information about Mucolyxir (I looked these up a while ago for a friend):

<a target=_blank class=ftalternatingbarlinklarge href="http://www.springboard4health.com/notebook/health_mucolyxir.html">http://www.springboard4health..../health_mucolyxir.html</a>
- esp. Dr. Allen's report

<a target=_blank class=ftalternatingbarlinklarge href="http://www.occupationaltherapist.com/forum/messageview.cfm?catid=6&threadid=19158&enterthread=y
">http://www.occupationaltherapi...d=19158&enterthread=y
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ana-jana.org/members/journals/JANAVol_91.pdf
">http://www.ana-jana.org/member...urnals/JANAVol_91.pdf
</a>- go to p.13

<a target=_blank class=ftalternatingbarlinklarge href="http://www.encyclopedia.com/doc/1G1-138483342.html
">http://www.encyclopedia.com/doc/1G1-138483342.html
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.org.au/forum/viewtopic.php?t=432
">http://www.cysticfibrosis.org....m/viewtopic.php?t=432
</a>- includes a list of alternative therapies

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=19157&enterthread=y">http://forums.cysticfibrosis.c...id=19157&enterthread=y</a>
- interesting forum trail...

I had just a very small sample and I'mout of Mucolyxir right now and am noticing a difference in my daughter. On Monday I'll be looking for the chiropractor that sold it to the person who passed her bottle on to me, but I know you can find it online as well.

Here's an article on Haritaki:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ayurhelp.com/plants/Cystic_fibrosis_Tc.htm
">http://www.ayurhelp.com/plants/Cystic_fibrosis_Tc.htm
</a>
Brigit's doctor has given permission for me to give a small dose (1/16tsp/day) of haritaki to Brigit, but that's not to say it would be right for every cf baby. Brigit is 6 months old. I have not yet begun to give it to her because I want to get her weight gain on track before introducing an alternative medicine.

Sevenstars
06-23-2008, 08:46 PM
You want to use aromatherapy and oils but using saline (water) is too invasive?

If you look around the adult forum, we do dabble in alternative therapies in addition to those normally prescribed by our docs, but I don't think aromatherapy is one of them. In fact, I would say most of the adults that post here, or at least a good portion, are very sensitive to strong smells. I can't really see aromatherapy being a useful tool.

Like Chaggie said, CF is all about prevention. It is a progressive disease so keeping it at bay NOW, before losing any ground is imperative. It's great he is healthy, with the treatments available today he can stay that way for a very long time.

mjflowergirl
06-25-2008, 01:01 PM
I could talk for DAYS about this one.

I wanted to say first off that hypertonic saline is a very harsh treatment and not easy to handle. I surely wouldn't think it would even be an option for an asymptomatic infant. I was told by our Doc that HS doesn't even come into play until later on when it's absolutely necessary. In other words, it's not a preventative measure. If anything, Pulmozyme is probably the easiest to tolerate and the most gentle if your Doc is thinking preventative. But without symptoms, why give your baby medication??? Unless the child has a known pancreatic insufficient mutation, in which case vitamins and enzymes are important.

Now, on to oils. Please, please don't just give your child essential oils without consulting a professional. And even then, ONLY use reputable sources for THERAPEUTIC grade oils- beware of fakes. There are many oils that are an irritant to mucous lining, and some that are even toxic if not used properly. BUT, there are also plenty of oils that are antibacterial and proven to kill or significantly inhibit the growth of certain bacterias including pseudomonas, staph, and h.flu among many others.

It will be difficult to utilize essential oils with a newborn, because their bodies are still so young and sensitive to anything. The only things I can think of right off the bat would be massage on the bottom of the feet with a VERY tiny concentration in a carrier oil- but only with a gentle EO suitable for infants and after testing for allergy, or possibly a single drop of oil in a bath. As your baby gets older and you want to address bacterial growths, look into getting a nebulizing diffuser. This will diffuse the essential oil into the room in microscopic particles that will be inhaled when someone is in the room and can then go to work directly on the bugs in the lungs. But, again, DO NOT do this in a newborn's room.

I think there is a common misconception with essential oils being that it's just the scent of the oil that carries all of the benefit. The scent of the oil does play a role in it's efficacy but more importantly, it's the properties of the oil itself and what it can do inside the body that is most important. The oils you'll want to research later are Melaleuca (Tea Tree), Oregano, Thyme (Linalool is the most gentle), Rosemary, Lemongrass, and Eucalyptus. Each of these either carry powerful antibacterial properties, anti-inflammatory properties, digestive stimulation, or other helpful characteristics for CF.

On a side note, I have always questioned the true integrity of Young Living. It is a HUGE multi-level marketing company which just doesn't sit right with me. They might have good products, I haven't tried, I'm just uncomfortable with having to pay more for a product so that I can pay the salesman when I can get it direct myself. And because the distributors are usually people who tried the product and liked it, they are rarely (yes, there are exceptions) properly trained and educated about using essential oils beyond the brochures and DVD's they were told to watch by the company. When you're dealing with a volatile substance that is going to be ingested or inhaled by your child... well, I think you can see why I HOPE you'll be extra careful when considering your source.

I would suggest looking at www.anandaapothecary.com www.florihana.com www.mountainroseherbs.com At Ananda Apothecary, you can email for a consultation and the girl there (Tarah) is so, SO very knowledgeable and helpful. You can tell she really cares about helping you and has a genuine passion for her work. She has sent me scientific research studies relating to oils that I'm using and so many other things.

Here are a few studies to look over:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/11556910?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed
">http://www.ncbi.nlm.nih.gov/pu...cles&logdbfrom=pubmed
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/17488023?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed
">http://www.ncbi.nlm.nih.gov/pu...cles&logdbfrom=pubmed
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/17972131?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum
">http://www.ncbi.nlm.nih.gov/pu...Panel.Pubmed_RVDocSum
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/17326042?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum
">http://www.ncbi.nlm.nih.gov/pu...Panel.Pubmed_RVDocSum
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/pubmed/11328766?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed
">http://www.ncbi.nlm.nih.gov/pu...cles&logdbfrom=pubmed
</a>
Feel free to email me if you want to chat more! Just take it slowly, don't jump into anything, and research, read, and ask questions until it just feels right. NEVER get essential oils from someone that you don't feel like you can trust 100%. It's not worth the risk.

Good luck and God Bless!

MJ

Sevenstars
06-26-2008, 03:57 AM
Originally posted by: mjflowergirl

I could talk for DAYS about this one.



I wanted to say first off that hypertonic saline is a very harsh treatment and not easy to handle. I surely wouldn't think it would even be an option for an asymptomatic infant. I was told by our Doc that HS doesn't even come into play until later on when it's absolutely necessary. In other words, it's not a preventative measure. If anything, Pulmozyme is probably the easiest to tolerate and the most gentle if your Doc is thinking preventative. But without symptoms, why give your baby medication??? Unless the child has a known pancreatic insufficient mutation, in which case vitamins and enzymes are important.



Just because something makes you cough, does not mean it is "harsh." It's not like breathing in smoke, or oil or something. Hypertonic saline frequently makes you cough, and the concentration must be adjusted to suit the person taking it. However, it's supposed to make you cough, that is simply what it does. It helps you get the mucous out of your lungs by making it thinner and more hydrated. It is "absolutely necessary" to cough out mucous and avoid infection if you have CF, so it is pretty much prescribed across the board now.

I am just wondering, what are you going to tell your kid when she is 18 and left with an FEV of &lt;50% because you were "trying things out" with her healthcare?

mjflowergirl
06-26-2008, 11:42 AM
OK really? Back off a bit there. I never said NOT to do something the doctor prescribed... I was just repeating information we received from OUR Doc. And NO, hypertonic saline is not just prescibed "across the board" "just because one has CF". Especially for a newborn! I know that it makes you cough and I know that is the point. But it would be too harsh for a newborn or infant lungs unless absolutely necessary- and no, that's not 100% of the time "just because one has CF". My son has never used HS and it hasn't even come up in possible treatments so how can you say it IS absolutely necessary for all CF patients? Maybe at some point in time, when his disease progresses to a point where it would help- but not from day one. And when that day comes, and the doc says give it to him, I will. No questions asked. I'm not against traditional medicine at ALL- I just think that it is POSSIBLE that alternative treatments could be beneficial.

Secondly, I'm not an idiot here and I'm not recommending someone give up all their medications and have their kid chew on tree leaves. Seriously. I am a concerned mother who loves her son dearly and is willing to TRY a complimentary therapy (complimentary meaning in ADDITION to his regular medications) that I have researched thoroughly in hopes of helping him through the day or fighting off bacterias. I'm just trying to help him- just like every other parent out there. If you are really completely against any form of alternative medicine and just want to label us irresponsible, why jump into a posting about it just to cause a problem? There's no need to argue just because you disagree with someone. Besides, how does one know if there IS a natural treatment that can help unless they try it?

Just so you know or have some peace of mind or whatever you're seeking here, I DID ask my doctor about hypertonic saline for my son because I read that it helps clear mucous and can be beneficial. She just about had a heart attack and said "NO WAY" that he was way too young to be using it routinely and that it's reserved as a second or third line of defense when other treatments aren't working because it's not easy to tolerate. Those were the words of the DOCTOR. And at that point he was over a year old, not a newborn infant. The only things he takes routinely are enzymes and vitamins. Because that's all he needs at this point. His last culture was negative. NEGATIVE. And without the use of hypertonic saline... not even once.

Look, I don't want to argue. We get the point. You don't agree with alternative treatments and it doesn't seem that you are even interested in considering the possibility. That's fine. Agree to disagree. I don't think you irresponsible or ignorant and you shouldn't think the same of me. We just having differing opinions.

Good luck to you and I truly hope you stay happy and healthy.

Sevenstars
06-27-2008, 02:10 AM
Originally posted by: mjflowergirl

Secondly, I'm not an idiot here and I'm not recommending someone give up all their medications and have their kid chew on tree leaves.


Good. I was worried from your other post that you were. And this thread in general has seemed to attract posters that seem that way. (BrigitsMom)

I'm not against alternative therapies in the least, I just think that, in general, they should be reserved for adults to choose, because they have to deal with the consequences of them.

I also never said HS was good for infants, most meds that we take as adults are not even extensively studied in children under 6. And no, it is not reservered for a rainy day. It is one of the foremost preventative treatments used now. Not the end-all be-all treatment; but it's simple, effective, and doesn't have many (hardly any) side affects, which is more than we can say for many other medicines that are commonly used.

grandmacf
08-06-2008, 01:19 PM
just a thought that you may want to consider is a humidifier that puts salt particles into the air. it is a more indirect approach that you can leave on at night. the one that we have also comes with aromatherapy oil so you can add that to really get all benefits. the one we have which is the only one i know to exist, we purchased at www.medisimpleshoppe.com. we are a big fan of it. hope that helps.

skooocher
08-19-2008, 02:11 AM
I'm a big fan of the aromatherapy in the humidifier especially when i have a bad cold. I generally use pure eucaplyptus oil or Olbas oil. It helps me breathe easier without being too strong or overpowering. However, I love the idea of a humidifier that also puts salt particles in the air. I'll have to check that out!

jenalba
09-29-2008, 08:02 PM
Hi, Im new here and this is my first post. I am 39 years with CF (female) and mom to a 15 yr. son.
Most of my issues are sinus related...Psuedomonal sinus infections, allergic fungal sinusitus...I've had over 20 sinus related surgeries and I can tell you honestly I use essential oils EVERYDAY!!
Living in wet moldy RI I have embraced the use of these wonder oils and will pass along my finds to you...but first a word about the humidifiers...yes, a great tool but please..a common sense caution, don't forget to clean your filters... a lot! I have been dealing with this disease for a long time and only through trial and error have I come to these conclusions!!(So you can avoid my mistakes)
Also...I use only distilled water in everything from humidifier to neti pot.
So here we go...my oils of choice.
Tea tree, eucalyptus, rosemary, clove, peppermint, lemon, cedarwood and pine.
I mix these together, say 20 drops of each in a glass amber bottle. From there I add 10- 20 drops to 4 oz. of water in a spray bottle as a room spray or 3 - 5 drops in a humidifier to kill mold and psuedomonas.Also spray in my car if it has been damp. Apparently this dilution is safe for children but i would refrain from using with infants. Again, a common sense caution.I am very allergic to most fragrance but these oils are ok. My sugesstion would be to try them one by one if you are sensitve. I hope this helps and I will soon have my blog up where I will share more alternative therapies that have really helped me.

Sandrawall
12-31-2010, 06:34 AM
<a target=_blank class=ftalternatingbarlinklarge href="http://www.internationaldrugmart.com/ultrase.shtml">Generic for Ultrase</a> (Pancrelipase) is digestive enzyme. It helps me in digesting and absorbing the food.

TheAmazingBD
04-02-2011, 02:38 AM
I wish i hadn't been exposed to so much western medicine care growing up, I think a lot of it is very damaging especially to someone who has a mild case of CF or hasn't even begun to show symptoms. Therefore I am a just say no to western medicine PATIENT....although some things I will use if I MUST. BUT,overall, holistic and alternative health care are my choices.

Hypertonic saline gives me serious heart palpitations and therefore, do not use it. If I have to weigh the option of coughing and having a heart attack...I will gladly cough. I can't imagine giving it to an infant.

Essential oils are amazing! I am an aesthetician and use them for skin care. It was that process that introduced me to using it for my lungs and sinuses. NOTE: Essential oil are VERY potent and people can have adverse reactions. Especially children and infants. I WOULD NEVER GIVE OR INTRODUCE A CHILD TO THEM! I am highly sensitive to EVERY smell...and have taken quite a bit of trial and error to find what I can handle and what is helpful.

It is true PREVENTATIVE is a great plan, but again, if you or your child have a mild case of CF, and load up on antibiotics and medication....well everything has sideaffects. I followed the DR.s orders and my parents until I was 12. I was quick to see that when I took a pill or a breathing treatment, something else would be off in my system. Not to mention the drag on my social life:( Preventative medicine i recommend:

#1 EXERCISE!! As soon as your little one can walk...teach them to jump, to skip to run...to dance, to swim.....THIS IS MY LIFE SAVER. Don't fall into the system of...they are't able to exercise....this is your number one line of defense!!!
#2 WATCH YOUR LITTLE ONES DIET! This is seriously complicated. What I know NOW about infants and children and health along with what a CF patient needs....would have seriously been handy for my parents 30 years ago. DON't FEED YOUR CHILD JUNK FOOD OF ANY SORT!!!! NO SODA&lt; NO CAFFEINE....NO COOKIES&lt; CAKES&lt; CANDY....this stuff is TOXIC and will only make your child's system WORK way more than it should.
#3 INTRODUCE THEM to eating veggies and fruits....RAW food is great and easily digestible....and what we were meant to eat. Stay away from boxes and packages. CF patients digestive system is seriously sensitive and PREVENTATIVE means not filling it with toxins they can get rid of or will have to deal with as an adult when they have other challenges to deal with....

I am not a DR by any means, so take what you will....bless

imported_Momto2
07-12-2011, 08:24 AM
Please be careful with aromatherapy. I did try it. Made my lungs much worse. Every CFer is an individual and may react differently to various treatments, but I would be extremely cautious.

I would second the exercise as well as watching the diet carefully. Keep a log, find out the individuals triggers on your child.

edan
07-12-2011, 11:53 AM
I have been talking to many doctors throughout the country and the rule of thought now is that the damage is being done early on, even before symptoms arise. That may be why your doctor wants to start your infant early. Regardless of whether you start aerosolized medications during healthy spells, there is also some literature on how saline actually helps non-CF kids with lung infections, so if your chlid does get sick as an infant, it may be worth looking into. The article here talks about how nebulized saline helps sick babies recover faster than their non-nebulized counterparts...

<A HREF="http://www.ncbi.nlm.nih.gov/pubmed/12576370">http://www.ncbi.nlm.nih.gov/pubmed/12576370</A>


For us, we found out about my daughter one year ago at age 3 (no symptoms). However, her xray still showed very mild peribronchial wall thickening, so she had the beginning look of CF lungs to the trained eye (xray technician said normal lungs but CF pulm saw hints of disease). Within 2 months of diagnosis, she came down with a HORRIBLE virus (this went around San Diego and could have been whooping cough). It landed her in the hospital. I wish we had her on HTS at the time because I think it would have kept her out. She started preschool one month later and had a series of probably 8 colds through the year (it was a bad one and everyone was getting them). Once we introduced HTS in November, we really saw a difference in recovery time. Antibiotics were needed less often. Out of all the medicines we tried (albuterol, xopanex, pulmozyme, HTS), HTS is the only one we use consistently. She only coughs on it if she has something brewing. Otherwise does not affect her in the slightest. We don't even do a bronchodialator before it.

Her following annual xray last month looked the same as the xray one year prior. So, I am glad we had gotten her used to nebulizing meds before she really did get sick. I believe this is what minimized the damage. It is my goal to keep her lungs as clear and healthy as possible so that if Vertex or another similar drug does come through, she will be at the top of her game.

Hope this helps.

Edan.

cindylou
07-12-2011, 08:05 PM
I have found both eucalyptus and tea tree oils (inhaled in steam) helpful in opening my airways.

Also, just a bit of advice... I would DEFINITELY start the preventative saline nebs. When I was a kid, it wasn't typical to start a CF baby on meds if they weren't symptomatic. The fact that they now do start preventative treatment has led to a BIG rise in healthiness. Even if she doesn't have symptoms, it's possible for there to be lung damage happening that you aren't aware of.

Georgiagirl
10-08-2011, 09:38 AM
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!

travlinuf
04-03-2012, 03:23 AM
I just happened upon this link while searching for better nutrition for my 3 yr old and found it almost amazing how things change in the CF world, in 4 years since this thread was started its routine for babies to be on HTS- my Dr, even tells us how it is believed to correct the underlying defect at the cellular level, so by all means give your baby HTS. My daughter says it burns her nose - but she hardly ever coughs and does it twice a day- every day. We are also discouraged from humidifers. I pray that in 4 more years we can have even bettter preventative meds or a cure!!!

Anomie
04-03-2012, 05:17 AM
Ya stay away from humidifiers unless you want her to start growing mold in her lungs. If anything I'd go with a de-humidifier with air purification system but really they can pick up these bugs anywhere so whats the point.

Incomudrox
04-03-2012, 05:22 AM
Anomie hardly.... Incense yes. However I found found essential oils to be a GOD SEND. Do some research on Frankincense for example. How it regenerates lung tissue in mice.... How it stops cancer and even ONCO docs use it as an adjudication therapy. Oh not to mention the ancient Egyptians used it to embalm the dead and they are the best preserved bodies. It stops tissue death COLD and promotes tissue regeneration and has an exact affinity to lung tissue. People bash alternative medicine but after all it got man as far as it did for thousands of years. A lot of drugs come about from research done from plants and then they remake the chemicals with side effects because well you can't patent plants. I use Frankincense oil and it works better than advair and ventolin and last for hours. I use a few other oils as well. If you are interested in the actual studies I have relating to any of these you can message me. I think using it exclusively in CF is stupid, but as disjunctive therapies it's whats kept me from lung transplant 100% no doubt.
Furthermore I understand CF as well or better than most doctors I have met. The mantelity of needing a "heafty western meidince" regime is exactly what people are made to think. HTS is junk, I have always suspected it to be that, and now I finally found something better than it that can also kill MRSA and MSSA and weaken PA by a lot but not an antibiotic and has mountains of scientific data behind it that can't be ingorned. That being inhaled glutathione but you're CF doc will never tell you about it because they can't charge a minimum of $2k for it. People take doctors word for gold and question none of it. I did for too long and was so sick for so long. I have never felt better than I am now weird...? No not really just science. The thing that doctors inheriently suck at is science.

To go some more..... HTS is NOT what lung "crave" lungs crave liquid... salt just happens to attract water this has been known for thousands of years. Can salt clean up the defective hypochlorous acid that your daughters lungs are filled with that are slowly fibrosing her lung tissue? I didn't think so. L-Glutathione can, as it is the bodies natural scavenger of hypochlorous acid. It's also semi mutolytic breaking up mucus. HTS is going to cause bronch spams eventually... glutathione won't. Gluthione is also found in every cell in the human body... HTS isn't. It's NOT bacteria in CF that hurts the lungs. Its our DEFECTIVE IMMUNE SYSTEM. It throws out tons and tons of hypochlorous acid and because in CF lungs there is none to very little glutathione to clean it up it stays there and builds up (mucus is from white blood cells in which hypochrlorous acid is transported by the body). So it stays there, causes lung bleeds, bronchial wall thickening, scarring, and hardening. Latin meaning of Fibrosis means literily to harden.

Anomie
04-03-2012, 05:53 AM
We talked to our cf doctor about brocco max and all that stuff to try to reverse bronchiectasis and they told us that stuff is for people with more advanced lung disease who are running out of options. I'm still trying to wrap my head around that one. Yeah lets wait until the bronchiectasis is more prominent before we start trying to reverse it.

I just don't like how this lady labels HTS as western medicine "bad" when its just salt water and at the same time she's seeking advice from complete strangers on how to experiment with controlling her son's cf on her own. Its like she's trying to substitute natural healing for the treatment regimen her son needs. I want to give my kid some of these natural remedies but my girlfriend won't let me give her ANYTHING without the doctors approval and they're not really for it. Sucks!

HisAngel
04-03-2012, 05:58 AM
I must agree with Incomudrox; My husband has CF, he will be 51 this July and diagnosed at 18months old. I firmly believe if it was not for alternative medicine/treatments he would be on the tx list or had a transplant already. Do I think his regular allopathic treatments are not important? Absolutely not! They are indeed! They play a huge role in keeping him as healthy as he can be for having CF. I believe the two compliment each other.
With each CF patient being different, they have to see what works for them. No individual is a text book, sadly many doctors think that they are. We use the Frankincense oil as well and have had very good luck with it, we also use other essential oils. When he did have an exacerbation and was in the hospital I brought the oils with me, as well as some other alternative treatments, the nurses and doctors saw me, as well as him with them. The response? After looking at him, his age and what he looked like even with an infection. Their response was? What ever your doing for him? Keep doing it, because for his age and having CF, he looks really good. Alternative treatments are not a cure-all, but neither is regular allopathic medicine.
CF is not regular kind of illness/disease. I believe until a "real" cure is found, people should keep looking, researching, reading, learning and aye, trying different things that are shown to improve the quality of life and improve the lungs. CF is not black and white, there are a LOT of Grey area's, the human body is a complex item, what works for one person may not for another, but then again without trying? One would never know and if improvement is possible? Why not go for it. I have a strong background in alternative/holistic medicine & therapies. As well I am a certified personal trainer. I would ever give my husband anything I did not fully research or thought would even come close to harming him. He as well always researches things we use, and his knowledge is vast also, having a PhD in Analytical Chemistry. We are out to improve his life as well as mine, not harm it and thus far doing what we have been doing seems to be working. These alternative medicines were out long before allopathic medicine came on board, many of the medicines used to today are a base of that natural substance, the bad side effects of many drugs out there comes not from the base substance, but instead the chemical components they have added to it, to make it a drug they can patent.

Incomudrox
04-03-2012, 05:58 AM
Originally posted by: Anomie We talked to our cf doctor about brocco max and all that stuff to try to reverse bronchiectasis and they told us that stuff is for people with more advanced lung disease who are running out of options. I'm still trying to wrap my head around that one. Yeah lets wait until the bronchiectasis is more prominent before we start trying to reverse it. I just don't like how this lady labels HTS as western medicine "bad" when its just salt water and at the same time she's seeking advice from complete strangers on how to experiment with controlling her son's cf on her own. Its like she's trying to substitute natural healing for the treatment regimen her son needs. I want to give my kid some of these natural remedies but my girlfriend won't let me give her ANYTHING without the doctors approval and they're not really for it. Sucks!

I hear what you are saying. The doctors are REACTIVE.... not proactive. Your daughter obivously isn't able to advocate so you have to. You need to prevent everything you can in any way possible. A lot of the stuff I do I would never give to a younger child. However the lady who started L-Glutathione in CF has 3 children with CF and they have take it for quite a while and are in great health. I see no reason to wait to try to reverse it? Makes no sense. If you don't want to give her the broccomax see if you can get her to eat broccoli everyday. HTS isn't a bad therapy there are just things that are a lot better and better tolerated.

Anomie
04-03-2012, 06:17 AM
It seems like alot of doctors scoff at this stuff too all the while taking huge kickbacks from the pharmaceutical companies. I just browsed the internet real briefly about the glutathione and it looks like there have been some studies done with it relating to CF for the reasons Incomudrox stated. So my question is do you nebulise it and how? I would be willing to try anything in addition to her treatments to help my daughter out. I already feel really bad that she got off to a poor start with her mis-diagnosis.

Incomudrox
04-03-2012, 06:29 AM
Originally posted by: Anomie It seems like alot of doctors scoff at this stuff too all the while taking huge kickbacks from the pharmaceutical companies. I just browsed the internet real briefly about the glutathione and it looks like there have been some studies done with it relating to CF for the reasons Incomudrox stated. So my question is do you nebulise it and how? I would be willing to try anything in addition to her treatments to help my daughter out. I already feel really bad that she got off to a poor start with her mis-diagnosis.

Yep, there are a lot of kick backs... in any event. I was miss dx'd until I was 7 so I know how it is.

<a href="http://www.theranaturals.com/">http://www.theranaturals.com/</a>you want the Reduced L-Glutathione Plus DO NOT get it anywhere else. This has sodium bicarb in it which acts as a buffer and give it the ability to be inhaled. You open one cabsule into 3-5cc of sterile water or normal saline and nebbulize. This company is run by the lady I was saying has the kids with CF that use it. Using it twice a day.

Tisha
06-24-2012, 08:36 PM
I've been "nebulizing" (breathing in three drops of essential oil in a bowl of boiling water, towel over my head) lavender oil and it makes me feel great!
Incomudrox: how do you use the Frankincense oil?
I've always combined regular "western" medicine with antibiotics, hypersaline, pulmozyme, etc but added all sorts of natural treatments. I strongly feel I'm alive and looking good thanks to all of that! We need to use all tools available, this disease is extremely complex (and every person is different) but doctors don't give any real solutions, so we must do as much as we can to stay well!