Originally Posted by LizaJane (Post 471260)

Yes, it's Dr T. see pm

Originally Posted by LizaJane (Post 472759)

I want to add a few notes on this thing about the atypical mycobacterium.
Most of the doctors I have seen over the past year are not at all sure it is of any significance at all. My sinus guy has been finding it in a lot of people, but he is the only person in the country writing about this or treating it, that I can tell. My other doctors tell me they are quite sure that if everyone was cultured for these atypicals, we'd find out that much of the population is positive. Not necessarily that everyone actually has it in their bodies, but that it's almost impossible to keep all instruments and testing materials clean of it. It's a ubiquitous organism, present in all drinking water, so we all ingest it daily. It is likely that many of us are colonized, without symptoms, and it is likely that when we get tested, unless all the materials in the doctor's office are tested, that contamination is high. That is because the organism is so darn hard to kill, including by normal disinfection. It's only killed by autoclaving, so it's on surfaces everywhere.



For me, I was sick, but it's now clear that I have had lyme for,maybe 20 years. My immune system is suppressed, and I have a lot of myofascial pain and inflammation. All these things set me up for sinus inflammation, but not necessarily from the mycobacterium, or even from fungi.

I don't know what to recommend about netty pots anymore. It seems prudent to use sterile saline, but then again, I was told that everytime we take a shower we inhale loads of mycobacterium, and this is how people with cystic fibrosis get this organism (they get lung infecgtions from it). So avoiding tap water in a netty pot might not change our exposure to these organisms at all.

Originally Posted by LizaJane (Post 473878)

After 20 years of sinus infections, 2 surgeries, and 2 months of IVs for sinus infections, I can now say unequivocally, that unless there is pus, there's not necessarily a sinus infection.

Face pain and stuffiness can be caused by myofascial disorders, and I am now getting treatment for pain that feels like sinus pain by osteopathic neck massage and acupuncture. My ENT says that I'm not infected, though I get inflamed. But then, when nerve fibers are impinged upon, they send pain signals out and can hurt in places other than the starting point.

So, unless there's clinical evidence of infection....think pain syndrome. It might lead someplace interesting.

For me, it lead to lyme disease, which causes a both neuropathy and myofascial pain. The mycobacterium and fungi were red herrings.

Originally Posted by frankb036 (Post 474084)

Thanks again for your info,,,one of the ENT's suggested that I might have some myofascial disorder but I discounted that since I too have had 2 to 3 sinus infections every year over a 15 year period (before my sinus surgery in 2000.) So I know what they are like...also I feel much better after taking a hot shower so again that leads me to the sinuses..and while my cat scan was negative the other ENT guy does see a small bit of pus when he does a physical examination..thinks that I am just sensitive to any small bit of congestion...anyway saw Dr T yesterday...I had gone to see him in 1999 before my sinus surgery..and I had forgotten but you are right he is VERY aggressive..told me he has about 30 patients with mycrobacteria infections...did some blood tests and wants to to a endoscopic exam of my sinuses which I refused...thinking that two ENT;s have been doing that constantly for the last 2 months so why would i need yet another period of torture..