My latest health update: When my sinus doc took swabs during my last infection, one month ago, the lab found organisms they are calling "acid fast".
Apparently, these are extremely hard to grow out, and Quest and Mayo have been trying to grow them for a month. They aren't growing, my doc says, because I had so many other bacteria that keep killing them off. So Mayo is sending them to someone in Texas who seems especially skilled at growing them.

Meanwhile, my sinus guy gave me a long talk on this. Even though they only saw a few of these, he says, it's very significant. There shouldn't be ANY. He's seen this in 30 patients, and all but one ended up being treated with THREE ANTIOBIOTICS. He's talking with a bunch of other experts, and so far they're all saying the same thing; THREE. Even though I'm actually feeling fairly well, sinus wise. I mean, for me.

He says this could have been the cause of all the infections I've had---that this could have been there 10 or more years, inflaming the mucosa just enough for other organisms to find a better home.

Anyway, one of the antibiotics is Cipro, which gives me neuro symptoms. Without a quinolone, he'd recommend intravenous. All this seems to me from outer space. So I asked him to call my neuro to see if there's any quinolone that would be less neurotoxic. In the meantime, I'm still on the Ceftin I've been on for 4 weeks already, which has helped a lot.

He says this is NOT tuberculosis, so I don't have to worry about that.

Yah. Just want I want, more exotica.

G'night Folk.

I've never heard of anything like this. Will research when feeling better. My husband brought home what we thought was an allergy, turned out it's a viral upper respritory infection. Really difficult to deal with when you have Sjogren's. Meantime maybe Mrs. D will have some suggestions for the antibiotics.

Do you think perhaps when you get this straightened out, you will feel much better? I'm sure hoping so. You need some good news for a change.

I'm really surprised that Texas is ahead of the big names in growing this stuff. We haven't been ahead in anything yet.


Billye

Its certainly time for a change of luck for you, i do hope the Texas people can get on top of this, geez, 3 antibiotics to knock it, sounds pretty nasty stuff.
I hope they can give you something that is not neuro toxic but still does a good job.
good luck with it anyway,
Brian

Ya know, there are times when it's cool to be exotic, but this is NOT one of them. Does your ENT have any idea why you got to be the "lucky" people to have this?

I am prone to chronic "exotic" fungal infections of the sinuses and mouth. My ENT would actually show me off (with my permission, of course) to interns and visiting docs who had never seen stuff like what I had except in medical journals. In my case, it was a vicious cycle of dryness from Sjogren's and an immune system too out of whack to kill off the resulting infections.

I do hope they are able to knock the infection out once and for all without exacerbating anything else.

fanfaire

I have no idea what to make of this one. My neuro says that probably thousands of people, millions, carry this and nobody ever knows; but then again, who's to say if i get sinus infections? My sinus guy says he's seen 30. And, MRS D!! I'm wondering if this is in tap water, and from irrigating....you never did like the idea.

But I'm not at all sure I'll do the treatment; I need to learn a lot more.

about shoving stuff up into a cavity that is not meant to be explored. Non Sterile stuff at that.

But then go back to microbiology lab. We cultured our throats , and
then had to identify what grew out. The most amazing horrible things were
discovered in my lab. Pneumococcus, Strep, Staph, Pseudomonas, etc.
None of us were sick. The explanation? Is that these things are in everyone,
and normally don't cause illness because of your immune system, the mucous layer protecting, other more benign organisms keeping them down, etc.

So the answer is keeping the immune system healthy, keeping the mucous membranes intact (EFAs, oral zinc), and not removing normal secretions which contain interferons, and staying hydrated.

So yes, I do not like this netti pot craze we are in. I would imagine if you were in a fire, or sand storm and got crap up your nose, one rinse could be helpful, a sterile rinse, that is. I also don't colonics, so don't get me started there either.

Also not all bacteria are virulent under normal circumstances. But you whack at them with 3 antibiotics and probably do more damage in the end. So I would consider it carefully. In the meantime I would do Mucinex or Humbid every day for several weeks...to get things normalized. Mucinex works best for me when I have any congestion. It unblocks my ears, etc. Take your vitamins/ and zinc. And stay away from fancy schmacy doctors with eager procedures etc.

Had to see my rheumatologist today. My sweet husband picked up a viral upper respriatory infection and three days later I got it. Today, running temp. So I called the rheumie who is also my pcp. He had my husband bring me in immediately. And you guessed it. Infection in the bronchial tubes. I'm not going to do any sinus rinsess while this is going on. I'm afraid of infecting my equipment with this bug. He gave me musinex with codiene because I can't quit coughing and I'm not getting any sleep. And the dreaded antibiotic quinolone. I took it with extreme fear tonight. I don't need any more neuropathy. But it is a short course. Only a week I think. And finally, Lasic for all the fluid I'm collecting in my legs and feet. He's very sparing of anything that will dry me more. He's only letting me take one tablet every other day. And told me to eat bananas every day while I"m taking it. Because of the high dose methotrexate, I am prone to catching everything that is around and it is serious stuff for me.

I don't know why the fluid is collecting. But when I took my socks off last night, my feet were bright red and so hot. You could see all the creases in them from the socks. Are the diabetic socks you all talk about at Walmart bigger?

Liza Jane, I don't think the sinus rinses when you have an active infection are really a good idea. You infect everything you are using in your nose. I remember when I had the first sinus surgery. I wanted to give my own blood to use if it was needed. They told me no, because I had an infection and could easily re-infect myself. I'm thinking the sinus rinses are a little like using my own blood. I could re-infect myself.

I use rinses once in awhile when I am really dry and I do it only to lubricate. But...I only do it once a day and maybe every three days. But I never do it when I have an infection.

Billye

Don't mean to hijack a thread, but wanted to respond to Silverlady before I forget.

I've had chronic edema in my lower legs and feet since 2003. No one's ever figured it out, so I just chalked it up to yet another fun autoimmune thing. In my case, diurectics did no good, but prednisone helped when I was so swollen I couldn't walk.

If the Lasic doesn't help, please try elevating your feet. And you might want to consider compression hose if this becomes a chronic problem. I hate the hose because I find their tightness painful, but they do their job.

I hate the stooopid getting bronchitis at the drop of a hat thing too. My cough has finally receded to its previous level after five weeks.

fanfaire

Not sure if they are "bigger" per se, but they are softer and more elastic. The tops do not bind around your ankle, so no indents if your feet are swollen. You can also get them at Target.

This has been interesting about the sinus infections as I tend to get a couple a year. I am going to print off for the next time I get one and take to my doctor.

LizaJane and Silverlady, I hope you both feel better fast.

--to intermittently get weird nasal/sinus things that cause me much pain and that various ENT's have been stumped by, as the cultures generally don't show anything out of the ordinary.

One ENT had the theory that my overactive immune system may be overreacting mucosally to small insults, and producing really thinck mucous that puts pressure on the sensitive membranes and results in pain, as thick secretions do not drain properly. Unlike other ENT's, he wanted me to flush sterile salt/baking soda solution up there several times a day, to dislodge all the stuff; he didn't believe this would change my flora much, just knock some of the thick stuff out. He also told me to keep well-hydrated. This was a different approach than in the past, when I had been prescribed nasal sparys with thinning/antibiotic meds by other ENT's.

I must admit I am of mixed feelings regarding the irrigation approach, not having the expertise here that I do in other areas. I can say the nose-drip-to-throat situation was so bad some years back that, mindful of the link between Epstein Barr-Virus and certain nasopharyngeal cancers, and EBV's link to certain types of acute neuropathies, I had myself titred up for the specific EBV antibody profile that is associated with that condition--fortunately it was negative.

I do wonder, though, given EBV's--and other human herpes viruses--tendencies to be immortalized in the nasopharyngeal area, how many of us with neuropathies also have chronic nose/sinus problems--my completely unscientific impression is that the coorelation, at least, is there fairly often. I know Wings has said that those of us who swallow a lot of mucous increase our chances of both misabsorbing nutrients and of getting nasties past the guarding cells of our intestinal tract, increasing the possibility of autoimmune molecular mimicry phenomena (and, of course, both can lead to neurological problems), but I don't know of much research that has addressed this possible connection.

In any case, hope you can all get some relief.