The identifying information came in on the organism in my sinuses. It's called mycobacterium cholanae/abscessa, and the recommendation is Doxycycline, Amikacin, and Biaxin for 3 - 6 months. The organisms were grown at Mayo, and in Dallas, but apparently Mayo has never had this in one of its own patients. My doc says he's gotten it in 25 cases, out of 2000 or more patients.

He says the decision about what to do is totally NOT an emergency, so I should just think about it. He had no recommendations for people to talk to, but said whoever I come up with is fine; it's just that no one has experience with this.

wow 3-6 months....after ten days on biaxin for respiratory infections im ready to be finished, but that is at 500mg 2x a day......what are the doses that you would have to take everyday....

please respond i too have chelonae sinus infection
 

Please respond..I too have chelonae siuns infection and would appreciate input from you since you have gone thru the treatment process

Hi--I was put on several antibiotics for about 6 months: Biaxin, Nasal Amikacin, and one other. Within a month I had a new lease on life and felt much better. I've had only one sinus infection since last January, when this diagnosis was made. I have, however, had aphthous ulcers of the throat, which is thought to be due to chronic infection or immunosuppression.

This lead to an immuno w/u and more culturing, and I tested positive for lyme disease, as well as not making immune antibodies of the IgG sort.

So now I am on antibiotics again, which the doctors I am seeing concurring that I have chronic lyme, that the mycobacterium was probably innocent, that many people carry it, and that the reason I felt better was that my lyme was being treated.

Go figger. They say I'm in for another year of antibiotics, and are pushing for IV. I've been pushing back, wanting a bit of a normal life, but I'm pretty sure I'll give in in a month or so. I do not feel anything like the way I did the first few months on antibiotics last year, and it's typical of lyme that antibiotics need to be rotated, because the bacteria changes forms.

I hope treatment helps you, but if it's just sinuses, it may not be the culprit.
My sinus guy who treated it is rare, with most of the other ENT/sinus guys thinking that many people harbor these organisms harmlessly. I don't know, myself.

Good luck.

thanks and need some add'l info
 

Thank you for your explanation...I wanted to know how long it took the antibiotics to relieve your symptoms (one week, a month?). Also who was the sinus doc that you went to? I live in NJ..

thanks and some questions
 

Thanks for the info..do you remember how long it took the antibiotics to relieve your symptoms... a few days..a few weeks, a month?
What is your Sinus doc''s name..the one who treated you for the chelonae infection..was it Dr Tichenor?

Yes, it's Dr T. see pm

thanks se you PM
 

I responded back in a pm..thanks for all the information...you are a sweetheart

I'm glad they figured out what it was.

Its scary though, because an acid fast test is the test they use to diagnose TB.
And TB is spread via air, so it would make sense then that it would be found in someones sinus, and respiratory tract, as they do lung X-ray, and sputum cultures etc when a case is confirmed.

This is not TB.... this organism is related to TB. There are many organisms in that family and not all are virulent to people.
Leprosy is another. They share a resistant cell wall which makes them hard to treat or get rid of.
It is a mycobacterium, but NOT the one that causes TB.

This organism is also found in wounds, and in plastic surgery infections (because of the use of non sterile instruments and irrigations). It is found mostly in soil and water.

This organism comes from using a netti pot or irrigating the sinuses with unsterile water.
Inhaling water thru the nose swimming also. It does not come from the air.

Here is more information:
http://emedicine.medscape.com/article/222790-overview

It is important to understand these differences. If you accidently refer to "resistant TB" socially today, you will be shunned and ostracized and gossiped about.