Has anyone with b.cepacia tried H.S.?

[Diane]

Has anyone with b.cepacia tried hypertonic saline? I know there were trials on people without b.cepacia and it worked well for them, which is all well and great <img src="i/expressions/face-icon-small-smile.gif" border="0"> But i am curious if anyone with cepcia has used it, or currently uses it. It irks the heck out of me when something new comes about ( i know h.s. isnt new) and when someone with cepacia wants to try it everyone shrugs their shoulders and says "well.... we dont know if it works for cepacia because we only tested it on people wo dont have it" WHY IS THIS ????!!!! Its usually the ones with b.cepacia that are in urgent need because we kind of have a time bomb thing going on and need better treatments NOW!
OK, rant my about that issue is over....lol
anyways if anyone has tried it ,please respond. Im wanting to try it at some point and see if it helps, but would like to know what someone thats tried it has experienced....

 

[anonymous]

Seems like I read some article that the results weren't as promising as they hoped (not anything to do with cepacia). I'll see if I can find it.

 

[WinAce]

I have B. cepacia and use it. It's the only treatment that I can instantly tell is working. After that, the sheer amount of liquefied crap that I can cough out is impressive. However, it's pretty irritating (wasn't the first times I used it, but I've been increasingly noticing that effect), so when really sick, I can't tolerate it as easily. And I'm unsure as to whether it actually thins that nasty stuff, or whether it irritates my throat enough that I cough it out automatically. But aside from those caveats, I'm very satisfied and would highly recommend it. And all for $40 a box, a fraction of the cost of, say, Pulmozyme! Long live those Australians who developed it <img src="i/expressions/face-icon-small-smile.gif" border="0">

120% agreement on the cepacia thing. It seems that researchers have come to the cynical (or cost-effective?) conclusion of "It's too late for those patients anyway, let's focus on the young'ins!" On occasion, though, I'll see an article like the recent one about using aerosolized Tobramycin and Amiloride (yes, a nebulized DIURETIC of all things) against cepacia. Granted, that's much more experimental and there were only a few patients in the study, but the results they obtained were stunning (3 out of 4 patients with B. cepacia had it eradicated from their cultures for over 2 years). And the kicker is that this research was also by Australian researchers!

Email me if you want that article, I got a complete version of it--you'll only find abstracts online unless you pay through the nose or access it from a university library.

 

[Diane]

Allan,
I wanted to let you know i saw that link on your blog and sent it to my doctor and he is able to get the full article on the aerosolized Tobramycin and Amiloride . I had such hope when i saw that on your blog that i had to email it to my nurse right away. Thats when we started talking about the hypertonic saline. WE decided i'd first try 3% since i have problems with hemoptysis and i want to see how i do on that first, before going to a higher concentration. What percentage are you using? Thanks so much for the info <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[WinAce]

You're welcome!

I'm using 10% HS mixed with an an ampule of Albuterol (that is, in turn, already pre-mixed with lower-concentration saline). According to my doctors, that takes the average salinity of the solution down to 7%, which is close to what the researchers did their studies with. Earlier, when I couldn't find the 10% solution in any pharmacy, I was using 3% solution directly (i.e., no mixing).

For reference, that article is <a href="http://erj.ersjournals.com/cgi/content/abstract/26/2/305">Middleton et al: Combination aerosol therapy to treat Burkholderia cepacia complex"</a> from the European Respiratory Journal. And my blog, of course, is <a href="http://www.save-allan.org/wpblog/">here</a>. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Diane]

Hi Allan,
I am assuming you are mixing the H.S in with the albuterol? I dont have albuterol in that form, I only use it in an inhaler form with a spacer and usually right before i use pulmozyme ( or when i need it). I have never used albuterol any other way. I feel like i am the only one who doesnt use it as a neb....lol

 

[WinAce]

Yeah, I am. I balked at the idea of adding yet another nebulizer (to replace the inhaler) but since these two are consolidated into one, what the hey.

 

[Diane]

Does it ever give you the "shaky" feeling that the inhaler does sometimes?

 

[WinAce]

Haven't experienced that in a while, with either of them. But it's been intermittent with me (the shakiness will leave for a couple of months, then recur, then vanish just as mysteriously) so I'm fully expecting a comeback.