[LizaJane]

Many of us with chronic sinus disease use neti pots or grossan irrigators when we are infected, or even routinely. Mrs D has always hated the idea, worried that we would be doing nothing other than pushing bacteria deeper inside us.
Those of us with the infections know that irrigation is an integral part of treatment and helps make us much better.

In fact, I've been able to treat most infections with irrigation alone over the past few years, although not all.

Well, there's a problem. I am now one of about 22 patients nationwide growing out an atypical mycobacterium from their sinuses. All of us have had the organism grown out at Mayo and further identified by a specialist in Texas. We are all patients who have had chronic sinus disease, and all of us have had fungi identified.

We also share one other characteristic: we irrigated with tap water.

It's not at all clear what one should irrigate with at this point. Tap water does have these atypical small organisms, and they're not removed by chlorine or the usual filters. Bottled water is not necessarily any safer.

The only water that is DEFINITELY safe would be pharmacy quality saline, which is made with reverse osmosis.

Mrs D anticipated this type of problem. It's not known how many people might be harboring these organisms and never know it. There's practically nothing written.

The recommendations of the American Lung Society (which is where my sinus guy is taking his advice) is for 3 months treatment with 3 drugs.

I'm to begin Amikacin, by irrigation, along with oral Biaxin and Septra. So that's two antibiotics orally for 3 months, and one by irrigation.

The idea is that they want me to be done with this before I go in for surgery on my back, which I think will be may or june.

Anyway, I feel pretty well. I don't feel like my sinuses have a major infection, just that they get infected easily, and my back is feeling quite well since I had an epidural in early January. While I can tell the epidural is wearing off, I'd never choose surgery for the pain.

The surgery is because everyone who looks at my spine films now, with 4 loose screws, gets worried that the screws will fracture the vertebrae, or injure nerves, or that if I fall, I can get a fracture. So now I'm slated for this surgery, even though I'm doing okay. Relatively.

Anyway, that's the update and Kudos for Mrs D.

[mrsD]

Here is a monograph on it:

Mycobacterium chelonae and Mycobacterium abscessus are nontuberculous mycobacteria (NTM), a grouping that encompasses all mycobacteria outside of the Mycobacterium tuberculosis complex. They are classified in the Runyon group IV, rapidly growing mycobacteria. They have been found in natural and processed water sources, as well as in sewage, and are especially common in tap water. Distribution is probably worldwide.

from http://www.emedicine.com/MED/topic1533.htm

While this is certainly a major bummer... I do hope all your efforts are successful. I would also wonder about all those high dose nasal steroids you used. Steroids reduce immune response. And I guess you will never know if that steroid nasal spray was prepared properly? Since they were sloppy with you, they could be sloppy in other ways too. (this is just common sense).

[LizaJane]

I don't think it's atypical TB really, though that was what I heard. I think atypical mycobacterium is more accurate. It's the abscessus one.

I'll see if I can edit that post.

Originally Posted by mrsd

I have another concern here.. I have bolded a statement by you. Did you mean to suggest you have atypical TB?

Here is a monograph on it:

from http://www.emedicine.com/MED/topic1533.htm

While this is certainly a major bummer... I do hope all your efforts are successful. I would also wonder about all those high dose nasal steroids you used. Steroids reduce immune response. And I guess you will never know if that steroid nasal spray was prepared properly? Since they were sloppy with you, they could be sloppy in other ways too. (this is just common sense).

[mrsD]

Originally Posted by LizaJane

I don't think it's atypical TB really, though that was what I heard. I think atypical mycobacterium is more accurate. It's the abscessus one.

I'll see if I can edit that post.

I just did a short search on this mycobacterium. There is quite a bit on it.
It causes infections in wounds from surgery and has been found in quackery
treatments for cosmetic purposes. It is not that rare, really. Only underreported by doctors.

I have edited my post accordingly.

Using that inaccurate term could cause a stampede these days, as well as
other noxious social reactions.