has oregano oil changed your routine?

wallflower

New member
Hey Michelle,

I do see Dr. Dunitz, which is why I was surprised he wasn't more willing to let me try it. I remember talking to you and knew that Jeremy was taking it, so I figured it would be a done deal.

I was also his last cf patient that day - and the only one not being admitted to the hospital, so I was also a little eager to get out of there away from any germs and didn't question too much.
 

wallflower

New member
Hey Michelle,

I do see Dr. Dunitz, which is why I was surprised he wasn't more willing to let me try it. I remember talking to you and knew that Jeremy was taking it, so I figured it would be a done deal.

I was also his last cf patient that day - and the only one not being admitted to the hospital, so I was also a little eager to get out of there away from any germs and didn't question too much.
 

anonymous

New member
sorry guys for that post I didnt read through it all...I was wondering if you take the pills and if they help more OREGACYN 450 mg P73 these are the pills I was looking to take...thanks Doug
 

catboogie

New member
hey doug, i know there are people taking the oregano oil in pill form. i am not one of them, i am doing the H2. i do not know which kind people are taking. maybe you should start a new thread about this?

laura
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lovingBenandCambree</b></i>

I talked to my doc yesterday and She very much discouraged me from doing OO for a few reasons.



1- You don't know what if any impurities are in it.



2- You don't know the exact amount you are getting.



3- This was the biggest point and the clincher for me. Oil does not leave your lungs. She said that it just sits in there and builds up. It cannot pass through the membranes like other things can. This has really deterred me. She said that she would further look into things since about 4 patients have inquired about it thanks to this site so I am still hoping that something good can be found.



Please everyone still keep us updated. The positives may just outweigh the problem.



Emilee</end quote></div>


I have had this exact same reaction from my CF center. They are VERY against it! They say it CAN lead to lipid pneumonia cause the oil in the lungs does just leads to a breeding ground for disease and infection. They say its much like those who put "Vics" in and around their nose... there is now a warning on it NOT to put it near your nose... this is because it DOES cause lipid pneumonia just from breathing in the oils in the Vics.

Also, such natural substances may or may not affect our other meds, and according to my pharmacist (who is NOT anti-natural substances, just against inhaling oil - and oregano OIL is still OIL even if its water soluble), it may make you more resistant to other antibiotics. We just don't know. My question is this... if you didn't know what TOBI was doing to you, but knew you were getting higher PFTs right now from it, would you still take it? Or, as the post on marijuana suggests, in some cases pot smoking helps some bring up more gunk, but is it still safe overall to be smoking it? Inhaling something that could potentially damage your lungs, even though the short-term results are good?

I'm VERY optimistic about the results everyone is getting with OO, and I'm not against natural things.... I just worry a lot about everyone on here, and don't want to start reading posts in 5-6 months that those taking OO are getting sicker, or that regular meds aren't working as well, or that they DID find oil in their lungs. It just really worries me. Please be aware of pros as well as cons when begininning ANY regimine (FDA approved or all-natural).... We are VERY conscientious about medications we put into our bodies and what they may do in the future, so I believe, we should be just as cautious with natural things we put in our bodies. JMO though. Please don't jump down my throat for this. Its JMO and my concerns.

Sonia
 

Faust

New member
It's totally volluntary. I honestly hope many don't try it, for a reference point. It would just further illustrate my points and endorse the substance more. The only bone of contention on my end, is the whole "the oil won't go away" argument. If any substance is Mycelized, it will dissolve in any water based fluid, any fluid. I can understand how others could be cautious due to other concerns, but due to that? You still get the properties of the oil into your lungs, but due to being mycelized, there is no lipids present, so how would you get lipoidal pneumonia?


Maybe I wasn't paying as much attention as I thought I was in deductive reasoning and logic class. Please fill me in how that works.
 

Faust

New member
Anyways, i'm off to the hockey game. Healthy skepticism is always a good thing, I encourage it. I have told others since day one to do their own research, for me it was beyond the right choice, it was a life changing choice. Take it easy.
 

PeterC

New member
The doctors are playing it safe!! It is in their best interest to not indorse any non FDA approved product. They could face law suits otherwise.

Most Docs will go by the book for their own protection!! Most will not recommend suplements or anything else for that matter that has not obtained FDA approval or been proven highly effective in clinical trials.

It is ultimately your choice!!

PeterC
 

anonymous

New member
I tend to agree with Sean and Peter. From my reading, OO is likely to kill much more pneumonia then it would ever lead to.
 

anonymous

New member
Well, my pharmacist explained the lipid pneumonia to me, but I kinda forgot what he said.... the part I retained had to do with the "vics" debate. Even if you dilute vics with water, its still oil that you're breathing, isn't it? (i will try to find the email he sent me and post it.)

as far as docs not recommending stuff not fda approved, this is not entirely true in my case. i've been to several cf clinics around the country and some have recommended omega 3, vitamin c, airborne, and hypertonic (even before studies were conclusive)... so, i disagree that docs and pharmacists are against everything unless its fda approved. i've also brought vits that were all-natural and supposed to make hair and nails grow to the pharmacist that is against OO, and he was all for it after noting it was unlikely any of the "natural" ingredients would interact with my other meds. he was all for it.

Sonia
 

anonymous

New member
OK, here's part of one of the many emails he's sent me regarding OO:

"... As for the Oregano. There is currently no published studies on the
use
of this product in cystic fibrosis patients. In theory, it does have
documented antibiotic effects against bacteria such as pseudomonas.
However, there are a number of concerns with this therapy. One is
that
it is a weak antibiotic which means that it is likely to cause
overgrowth of drug resistant pseudomonas which is a lot bigger
problem
in the long run for us to treat. Second is that it is an herbal
product
which is not regulated by the FDA. The company does not have to
prove
that it is safe or effective to sell their herbal product. In fact,
they could fill their product with 99% placebo or sugar and there is
nothing that you could do about that. More importantly, the herbal
companies are not regulated with respect to potential contamination
either as they are not required to test regularly for this. Lastly,
not
all of the products are created equal. In other words, if one study
uses a particular oregano oil, you can not assume that all oregano
oils
are or will be the same.

In summary, we are not opposed to using supplement products but the
lack of testing for safety and effectiveness are definitely a
concern."

[ I know some may think this is the generic "I'm working for the drug company, so I have to promote my FDA approved products", but thought I'd pass it on as food for thought anyway. -Sonia]
 

anonymous

New member
Oh, ya, and I wasn't able to find anything else about lipid pnemonia except this link:

<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Lipid_pneumonia">http://en.wikipedia.org/wiki/Lipid_pneumonia</a>

It doesn't say much as to how or why lipids stay in the lungs, just some info. on it.

Sonia
 

anonymous

New member
so, on that website on lipid pneumonia...it states a lipid as being,"Lipids are characterized by being water-insoluble but soluble in nonpolar organic solvents."

What does this mean? I think I am understanding this to mean that the water soluable is not a true lipid....is that right?
 

Faust

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Well, my pharmacist explained the lipid pneumonia to me, but I kinda forgot what he said.... the part I retained had to do with the "vics" debate. Even if you dilute vics with water, its still oil that you're breathing, isn't it? (i will try to find the email he sent me and post it.)

</end quote></div>


Well comparing vicks vaporub and a mycelized substance, and noting that "It's diluted with water", is so far from any form of logical biochemical connection than I can think of.


Here are the actual ingredients of Vicks vaporub:


5.26% Camphor
2.82% Menthol
0.09% Thymol
1.33% Oils of Eucalyptus
0.69% Nutmeg
0.44% Cedar Leaf
4.68% Turpentine
100% Petrolatum q.s.


Here are the general components of a typical commercially available oil of oregano (non mycelized): Oregano Oil (a-Thujene .68%, a-Pinene .53%, Myrcene .63%, a-Terpinene 1.20%, p-Cymene, y-Terpenine 6.26%, Linalool .95%, Thymol .60%, Carvacrol 79.27%, B-Caryophyllene 2.43%, a-Humulene .20%, Caryophyllene Oxide .20% ).

There is literally zero comparison between the two. Comparing concord grape juice and orange juice would be a much closer comparison. About the only real closeness the two substances share is that one has more Thymol in it (quite a bit more, but still much less than 1%) than the other.

One of the largest beneficial aspects of oil of oregano comes from it's natural, high quantity of Carvacrol (good brands with good sources yield 60% - high 80%'s).


I could sit here all night long and legitimately dispute the stated opinions of the health care professionals in which you are citeing, but what's the point. I've shown what I have shown in the past with providing others massively huge databases for them to look deeper into this substances safety and efficacy with regards towards it's use with regards to CF. If they choose not to, I can only continue to espouse what I currently say regarding the substance.

Google is your friend. Google up Carvacrol and go a couple pages back to get past the immediate spam trying to sell you oregano oil products, and start to actually look at real sources to find out more about the wonderful substance. Most of the other ingredients (and yes I have researched them as well), if found to not be an outright positive health substance, they are in such trace amounts, that by any normal application of the mycelized form of the substance, I would venture to say it would be nearly impossible to harm you, just from a chemical standpoint.

Here is a good hit on carvacrol (it is taken directly from pubmed, which is a database of the national institutes of health, which i'm sure some of us lungers have been to for some trials, like I have):


<a target=_blank class=ftalternatingbarlinklarge href="http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=546778
">http://www.pubmedcentral.nih.g...der.fcgi?artid=546778
</a>

You wanna hear their general conclusion on Carvacrol? Here ya go:

The present study showed that continuous exposure of this organism to nonbiocidal concentrations of carvacrol could disrupt normal development of the biofilm. At high concentrations (5.0 mmol/h), carvacrol caused total inactivation of both bacteria and prevented coaggregation of cells; presumably, viable cells were killed prior to the initial attachment of bacteria.

In conclusion, this study has demonstrated the inhibitory effects of carvacrol, a natural antimicrobial, in a dual-species biofilm at various stages of maturation. Pulse and continuous-exposure studies showed that carvacrol was as effective as Spor-Klenz RTU, a commercial-grade sanitizing agent, against biofilms. The results also demonstrated the resilient nature and regenerative capacity of biofilm matrices.


Oregano Oil should not be viewed as a silver bullet total cure for CF. From what we are gathering amongst those CF's who are reporting, roughly high 90 percentile are reporting vast improvement in their PFT's, and the way they feel. As for cultures, it will take much more time to try and confirm anything. A couple have reported total lack of PA in their cultures after having PA for a good period of time. That wasn't the case with me. The substance has totally eradicated my CF related arthritic symptoms, and 100% gotten rid of my Gout, along with a long time between my last hemoptysis, a complete reversal in my sinus health (from "desperately needing surgery" to "no need"), the viscosity of my mucous has drastically thinned, and the general color of my mucous has drastically lightened.

NOTHING in conventional medications/CF treatment have ever brought me to this point. I'm not saying the substance doesn't have some possible drawbacks...This is a new territory for me, as it is with other CF's willing to pony up and do what i'm doing. Those of us doing what i'm doing, were more than likely sick of "staying the course" with their current treatments CF wise. Were sick of seeing recurring cultures of multiresistant strains of PA and other common CF bugs. We were sick of feeling like crap. We personally felt like there had to be something else out there that conventional medicine was overlooking. We were willing to take a chance, when the long tedious conventional CF treatments weren't doing what they were doing before, and we faces a continual general decline in our health.


As i've said before, I don't want every CF to take it. I want there to be a user group, and a non user group, with no placebo effect present. I could totally be wrong and opening pandorah's box, but given my limited intellect, my limited education, and the mountainous research I have given forth on this topic, I am willing to make an educated guess and take a gamble. I would be happy being the only guinea pig in this test, but I had to share how the substance has helped me, and others that were in the shoes I described earlier, want to possibly benefit as well. While it might have been scientifically prudent to not reveal partial results of the test prematurely, I am still a CF patient, and I was very exuberant in general regarding my outcome. It is now nearly 8 or maybe 9 months in (I always lose track of time), and I feel just as good as I did the first week or two into the delivery of the substance into my body.

We could be foolhardy simpletons, whistleing and skipping to our demise. We could also be pioneers laying new groundwork for a new understanding, approach, and treatment of CF. We could just (and do) as easily die at a very early age due to nothing but the natural (and sometimes accelerated due to conventional medications) progression of our disease. Or people like myself took take an informed risk and "see what happens". For me there was no choice any longer. I knew I was healthier than 83% lung function, all I needed was the right substance to help alleviate my symptoms.

I could die in 10 years from some ultra bizarre one in one million biochemical reaction to taking in the substance for so long...That could be true. Now compare how I feel now, how I am seriously attempting to be "normal" again via working and many other aspects, and go back in time when I was a tore up husk from what my doctors kept doing to me and me no longer responding. Ask that person (me back then) if I would like to get on a regimen of this substance (with my current self standing there with obvious positive results), or stay languishing where he was at that point in time, probably would get worse, and have a very accelerated death?


In summation: For the 100,000 time, make your own decisions what you put in your body, but please do so with the proper research, and not just the educated guesses of those with totally biased or flawed data.
 

EnergyGal

New member
I wonder if anyone of you have tried to rub OO on your chest and around your thymus gland (sits near your heart)?

To me this is a safe way to administer the product. Since I had a transplant, I would never consider using oo in any form but if I was in your shoes, I would put the substance on my chest around my neck and take it internally. I would not put a lot on. I have learned that less is more and anything good could potentially become toxic in the body.
 

anonymous

New member
Sean,

I am not trying to start any argument here, as when I first read all your wonderful experiences on OO, I was ready to start (and even emailed - without any responses - the company you said would make it water soluble for you).... I was ready to try it.

Then, I just asked my pharmacist and doc what they thought about it. This is what they said, and I am just passing it on. I consider the opinions of doctors and pharmacists that hold degrees and specialties in lung disease to be at least somewhat (in many cases) worth at least giving a second thought to. I am not suggesting they are absolutely right, or nonbiased (although, one would hope that ethically, they have some scruples). I'm not trying to start a debate. I am just sharing what I have heard, researched, and found out through my own sources. I am simply sharing what I have heard, much like you share your personal experience with it. I was afraid it would turn into an argument, but I just want people to be aware that not everyone feels as positive about it as those who have started to take it.

Since not one single study has actually been done on CFers, it does worry me. At least, with regard to glutathione, a semi-controlled study, was done to determine amount, how to "crush" the herb to inhale, etc. This sparked the CFF to go on with their own versions of "controlled" experiments. My hope is, with all the interest OO is generating, the CFF will jump on board this as well.

I do think the CFF is somewhat underappreciated by many because they are slow in getting things approved, but I want to remind you of what good they do and that the meds we are on now that are keeping us alive are mostly due to their efforts. So, yes, they are painfully slow when it comes to life-saving treatments, but they are also thourough (which is something I know one must be when testing meds that will be mass-produced). I am currently in a study in its final phase, and one of the major problems of getting things passed is that it is often difficult to recruit people to take place in the final phases... many don't fit the "criteria", others don't know about the study, etc..... So, it is not ALWAYS the big drug companies holding things back. Again, I'm not trying to start a debate here... just stating my opinion and asking you to reflect on the fact that the CFF researchers, who many here bash for being too "FDA approved" happy is also helping keep many of us alive (slowly, but surely). I do know they could do a lot better and be a lot faster, but they actually are pretty fast compared to some diseases that you rarely hear about having "breakthrough" meds... I mean, in the last several years alone, we've had TOBI, zithromycin, hypertonic, soon inhaled aztreonam, etc. I can't think of too many diseases that have made such progress. I realize it is ALL too slow to those of us awaiting such treatments, however.... don't get me wrong.

(... hmm.... I've just noticed that my post has taken a bizarro turn into a CFF public affairs rant.... sorry 'bout that)

Anyhoo... back to the OO.... I ask that you do not become upset with me for stating what I've found out about it (as irrational as you think it is). I pray they are wrong and you continue to have the amazing results you have on it! Perhaps in the future, I will be the one to say, "wow, I could have been on OO this whole time, and instead I waiting cause "they" said it was "bad"... If that is the case, I will wish I had started it. And, maybe in the future, I will start it, against the advice of my docs. I am simply playing devil's advocate here. I think we need to see ALL sides of an issue, not just those which support our conclusions. JMO.

Anyway, please do keep us posted, to those who are on it... how your pfts do, how your pseudo. progresses. I am still very interested in this, and will watch carefully to make my own determination (as you say, it is up to each individual).

I also am still awaiting word on whether OO has been known to cause miscarriages (as HollyCathryn asked weeks ago)? Perhaps I missed the post, cause I have not been on a whole lot, but I am curious if there is any truth to this.

Thanks for listening (reading).... Best of luck!

Sonia
 

anonymous

New member
Okey Dokey. Glad to hear it. I'm still VERY intersted in this topic.

Sonia <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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