always something exotic
 

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.

Good Grief!! Holy Moses!! What next?
 

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. :eek: 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
:cool:

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.

Well... I do wonder...
 

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. :yikes:

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.

Weighing in on this one
 

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
:cool:

Diabetic Socks
 

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.

I also have a tendency--
 

--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.

our digestive systems
 

are designed to kill most invaders that reach it. The few infectious ones that
are successful evolved ways to bypass the high acid content of the stomach.

However, when you artificially remove that acid, one is asking for trouble.
That is what is happening now. Consumption of acid lowering drugs is very high in this country, and often these are used when not needed.

Another issue is Cox-2. There was a study in 1999, which I posted at OBT and it is now lost in that crash, about the role of Cox-2 in the lining of the GI tract.
Cox-2 cytokines are important players in blocking hurtful substances from entering thru the GI mucosa. When blocked they cannot protect us from substances which are harmful. Cox-2 blockers are NSAIDs. I think the rapid rise in gluten intolerance has paralleled the use and OTC availability of this family of drugs. Steroids like Prednisone also block Cox-2.

I have not seen any studies showing that swallowing your mucous creates mimicry. However, using drugs in excess that block the body's natural healing could be a factor. 1) acid blocking drugs 2) NSAIDs, 3) steroids

I had some very bad sinus infections, at one time. It turned out they were from a dying tooth, the last upper molar on the left. The dentist had filled that tooth too deeply and the nerve was dying. The resulting infection never swelled the gum or tooth area, but drained into the sinus. The ENT I went to used to manually drain it (my son called it the snot sucker :p) , and once he fixed the turbinate bones in the office so I could breathe better (my son had hit my face with his head when he was 3 accidently during his own outdoor injury and upset), and I had a few antibiotic courses. When I had the tooth root canaled all the infections stopped. Having a root perforate the sinus membrane is not common, but it does happen. I had a real nightmare with that issue, but at no time did my ENT propose more radical treatments. The dentist did comment that I had a very efficient immune system to handle all that.

Thanks Mrs. D
 

There are a lot of things in your's and Glenn's post that tell me why I'm in this situation. My sinus's have been messed up for years due to chronic allergies. I've had surgery twice to drain them and as a result have huge pockets up there that collect the mucus. I have to take medicine constantly to get it to drain. But when this infection set in, it as it always does went instantly to my bronchial tubes. I seldom get anything but bronchial infections and the thick mucus caused by Sjogren's really gives me big problems with trying to get all of the cold, etc. broken up and coughed up. Sjogren's is a whole new world when trying to get mucus working right again.

Well, I'm headed for my cup of morning tea. oh, dlshaffer, thanks for the info on the socks.

Billye

This whole issue is sort of scaring....
 

literally! the poop outta me? Likens to the 'Wizard of Oz' 'Lions and tigers and bears...OH MY! Everything fungus, bacterial, viral...well -they are related, and probably more intimately than we want to know...but there are likely a whole stream of causes/effects chains thru the whole symptom dx. then further symtoms dx. aspects that only YOU Liza Jane can solve in the 'mystery of you'.
There are times when I feel we are a part of a neurological 'X-Files'. In that if the docs don't do the detective work....well, we have to. Thus resources such as the 'Lists'. The next step is to get lucky [VERY!] and have a doc or docs who are willing to explore the whole spectrum of variables. As things stand now, I suspect it is wholly contingent upon a patient's ability to convince any physician[s] to do the testing that should/could be done which could get answers promptly. As we all know, the neuro field has a distinct tendency to MOVE CAUTIOUSLY.. partly costs and partly well, mere caution. The variables are too diverse. Thus is the luck of the draw in getting a physician who is knowledgeable and willing to go to bat for a patient. Those with both geographic and the 'training' liabilities of those physicians available within their regional resources or insurance plans, makes this a really touchy issue at times.
I am getting the 'willies' as they say about the potential implications of sinus infections and issues to the overall picture. This whole aspect is scary, that it is totally overlooked in all diagnostic criteria scares me even more! I truly hope that YOU are getting somewhere on this. It could be new ground as they say? Or a 'GEE! I KNEW THAT!' sort of medical guru moment...? Interesting aspect. - j

It scares me too, and finding a doc who is curious about the cause of these problems, is not easy... LizaJane and Billye are both lucky, in that their doctors seem to be trying to stay on top of things...

I do think in Sjogren's though, that the thick mucus provides a breeding ground for no telling what. Look at what MrsD said they grew in their Microbiology lab and those students were healthy. This was not making the students sick, but the micro organisms were there. Probably what happens is that those of us with screwed up immune systems cannot handle the presence of stuff like this and we end up sick...

I don't know about the rest of you, but I think I am going to try and stay in much more this winter. I don't want to end up down with something nasty as a result of a sinus or bronchial infection. One of the major concerns is the fact I am on antibiotics so much...

Cathie

Sorry to pop in here after being gone for quite a while. Just have to mention again that stomach acid is soooo important, and it is very common for it to lessen as the decades pass (and rarely not too many decades), even if a person has not taken any acid reducers.

The more I have read, the more problems I believe are caused or exacerbated by low stomach acid. Consider betaine hcl and digestive enzymes?

rose

Just wanted to comment about Cipro.
Really strange stuff that can get your immunity to antibiotics on the hype.
My son (and a lot of other quadriplegics) has had to use it for UTI's, & the docs don't like to use it too much, because it'll make it kinda useless in the future, when/if it is needed again. Kinda overkill- strong stuff. Too much isn't good. Try to use alternatives, if possible- especially when using it IV.

Cipro
 

Nide44 - totally agree on the Cipro - I was given it for surmised food poinsioning (turned out the tests were negative but they didnt want to wait for results) - it gave me C-difficile (man made infection which is basically bleeding colitis) - which took even more awful anti-b's to fight - Flagyl (which makes one feel completely awful and Vancomycin - taken orally - to try to kill the infection it caused (vanco is a "controlled anti-b" of last resort)... still took six months on and off of both drugs together to clobber the "man made" infection from the Cipro - lots of time in the hospital - and the loss of my sensory nerves... I will not touch anti-b's at this point unless I know there is definatey an infection......

Bob
 

If i could run i would run from that stuff,but I can't and it's given,to
far to many people .as are others,Anti..s I mean. Sue

Not to
 

mention and she did Vanco,my son's best friend is one of my Infec.Diease
Dr...We had a royal battle over that,he won it was pupped into me 3 hrs. .2
times a day...Well it did the job,on Marsa and my kidneys at time...They
are runnning around cleaning the very best hospitals...But what about
or nusing homes. I must take a break,it's warm but raining here in Mo.
Everything,rain,change of time throws me for a :( Sue

Update/ statins?
 

I've taken no action on the atypical mycobacteria, or acid fast bacilli which is in my sinuses. My doctor has recommended a quinolone nasal wash, as I can't and won't take Cipro. In addition he'd want augmentin, and one other I forgot. But things are still cooking at Mayo and Texas, and I'm not pushing this. I really don't want to.

On the other hand, I've posted that a month ago my cholesterol jumped to 350 with an LDL of 190. These are very high numbers. We thought it might be the Forteo I was on, but I'm off it a month, and my cholesterol is still very high.

My endocrinologist, yesterday, said I really should take Lipitor, and he understands about the neuropathy, and the neuropathy symptoms from Forteo. What he says is that at the first signal that my neuropathy is changing, I should stop. He says there's no way to know if it will hurt me without trying, and if I'm vigilant, I could stop right away. I haven't spoken to my neurologist or cardiologist about it yet, but my guess is they will agree.

Anyone have anything to offer on this? Mrs D?

I know I'd be rather wary--
 

--of going on Lipitor with your history (depsite the doctor's take on it); would Zetia perhaps be a better choice (if not contraindicated)? And perhaps some niacin (or did you have a particular flushing problem with that in the past)?

The bigger question, though, is what jumped your cholesterol numbers to those levels? Forteo certainly may have contributed, given its effects on Vitamin D metabolism, but I haven't been able to find anything that points to a real link this morning (admittedly it's been a very cursory search). Could there be other possible culprits? I somehow doubt you've been consuming lard.

re: Lipitor...
 

Well, why don't you start your investigations with why it is always Lipitor?

LIPITOR

It doesn't have to be THAT statin, does it? ( the answer to this is YES, because right now Pfizer is doing the biggest push ever for any drug ever, to get the last drop of $$ from the patent which is expiring very soon. When that happens, you will see a push then for the toxic Crestor, since it is the last one left. And you will see more true studies made public showing statins are flawed and dangerous like we have seen with other drugs going off patent).

If you visit our PD forum there are posts there about other statins that
are more useful in neurological disease. (Simvastatin for example).
Just type that into the search for that forum.

Then you can watch this ditty from YouTube... and carefully study the graph presented:
http://uk.youtube.com/watch?v=i8SSCNaaDcE#GU5U2spHI_4

You can hit the pause button at will.

Then you can check out this website:
http://www.cholesterol-and-health.co...olesterol.html
If you search Monica study cholesterol you can find articles like this one:
http://www.forces.org/evidence/files/cardio.htm

In the end it is your decision of course.

And as far as your nose is concerned... remember the simple medical fact that the royal road to your brain, is the olfactory bulb. What do people do with recreational drugs? They SNORT them, whenever possible.
http://pharmalicensing.com/articles/..._37d4cd6e18626
Now when one wants and needs a drug to go to the brain effectively, then this delivery system is ideal. When one puts drugs you don't want in your brain, into a nasal delivery system that expedites them there, you get problems. Like Decadron.
The fluroquinolones are the most neurotoxic of the antibiotics out there, and you consider shooting them right into your brain this way? This logic elludes me. This is why I won't recommend nasal vaccines.

Thanks, Mrs D, I'm going to work my way through these sites. I do know that the cholesterol idea is an oversold idea, and that the goals of cholesterols as low as they are being sent with lipitor make no sense, but of course, I need to learn a bunch more before I decide what, if anything, to do. Sadly, I do this learning over and over, as I do with many topics, forgetting what I've learned when resolved the issue---that time around.

I don't know what the PD forum is, however; can you lead me there?

...
 

PD forum = Parkinson's forum here.

There are many threads...
there some recent, some not so. Using the search
will be helpful for you.

Thanks, Mrs D, there's a lot to wade through here, and I'm going to need to print and read, which means buying computer paper today on my errand-run.

What I'm wondering is this: Given what you know about cholesterol and given what we know about the importance of good mitochondrial function to recover from neuropathy (I'm pretty sure my mitoochondria were poisoned, and my carnitine is low in the absence of supplements), how would you feel with a cholesterol of 300, the LDL portion being about 200 of it, the HDL about 100.

These are rounded numbers. So far my doctors have all believed that my cholesterol of 225 was not a risk, since the HDL was always high; now I'm over some sort of tipping point for them.

Would you face off on this and NOT get treatment if it were yourself?

Push for simvastatin?

Any thoughts?

Who knows anything anymore?
 

You'll have to decide for yourself.


I am not in reality advocating other statins over Lipitor. Only pointing out that just because they are now generic, they are IGNORED by doctors for the most part unless insurances force their use. In fact Pfizer has cleverly insinuated a study to convince even the GODS of insurance payout that Lipitor is BETTER than other statins. Yes they have. The only statin that crosses into the brain well is Zocor. (this may be good or bad depending on what happens to the patient in the final analysis. But it is a provable fact).

So rather than research the drugs, you should look into why your cholesterol is high to begin with. 1) goes up for almost every human as they age you know. 2) is there some feedback loop connected to your pituitary problem? Cholesterol is a precursor for making all hormones you know. So does cholesterol go up, because we are no longer making estrogen etc?


The studies are just not good enough...
http://www.cholesterol-and-health.co...es-Stroke.html
See how you feel after reading this article! then read this new article on the toxicity of statins to mitochondria:
As long as the studies funded by the drug companies themselves are taken as truth, the waters will always be muddy, IMO.


removing personal information

I am glad they did a culture on your sinuses. Sometimes they suggest IV treatment becuase it crosses the blood brain barrier better than oral, but that also depends on the drug they are using. Either way, the antibiotics will cause changes in the normal body flora which keep some of the more exotic organisms in check. (Interestingly, many nurses when cultured nasally carried MRSA and had no symptoms, obviously because they wre exposed to it way before it was even identified...sorry for the digression.)

I think you are wise to ponder the situation. Will the treatment irradicate it or is it likely to come back due to the dryness or other drugs such as anti-inflammatory or immune suppressants? It is a tough call. How dangerous are the organisms?

On the cholesterol, mine is running high too, not quite as high as yours, and I found if I walked even two miles per day, I got it down, somewhat. I have not agreed to taking any cholesterol lowering drugs and just try diet and exercise and kind of live on the cusp. I know exercise is not in the picture for many of us, at least on many days. I am thinking if I have to make the choice....I am thinking zetia....but I hope I do not have to make the choice. Way back when my husband had great luck with some garlic thing he bought, LOL, but it also messed up his liver enzymes, just like the cholesterol drugs. I have a real concern regarding rhabdomyolosis and those drugs. Again, a really, really hard call.

I am one of those 'fortunate' people who gets so darn sick on most drugs, that I can't take most of them....which will probably do me in at some point. But I guess that is what I have to weigh....risk versus benefit, with very little margin for error. Docs can be too cavalier about doling out some drugs and way too stingy with others. It does sound like they are thinking this thru, as are you, and in the long run, you will make the right decision for the circumstances, and you can't look back on it and ruminate. (Been there, done that and it does no good.)

Is running a large area, high quality HEPA filter all the time of any use? I use one during the winter and we seldom get sick from colds or flu. I used to have hideous sinus problems. Every cold became a sinus infection. If you are dry, don't run the HEPA in the room you are in the most, as it really blows out air hard....very drying. I also got rid of every carpeted surface in the house...(had too, have pets, hubby has allergies). Getting rid of carpet really helped.

time to think
 

The good news is I have a lot of good specialists, and I can punt between them. It was the endocrinologist who wanted to put me on lipitor, but I also have a cardiologist. I sent him the numbers, and he called me today, saying he's concerned, but thinks they may come down further back to where they used to be. He said HDL usually never changes over time without something going on, so he's not at all sure why my HDL is lower than it had been. His recommendation--eat a very low saturated fat diet and let's look again in another month. He's concerned about giving lipitor to someone with neuropathy.

I like that. Still need to talk more with the sinus guy, but again, I'm in no rush to take drugs for anything. I'm generally feeling well, and I'd like to keep it that way.

And, remember--
 

--the way those alarming commercials try to tie high cholesterol levels to heart dsease is a great oversimplification. High LDL levels alone do not seem to have a major coorelation with myocardial events, whereas high levels in conjunction with high homcysteine and C-reactive protein levels do. The other part of the puzzle seems to be inflammation:

http://www.webmd.com/heart-disease/g...in-crp-testing

Of course, I know you've had various inflammation issues over the years, but how are those levels currently? You may, as cycelops says, be able to lower your levels enough with merely diet, exercise, and some supplementation to "live on the cusp".

In terms of cardiac risk: My CRP and homocysteine are always low, and I don't have other risk factors, except a dad with coronary disease. My chol:HDL ratio is still good, even with these very high numbers it's 3/4.

I take my supplements, which should help also: I take AREDS formula antioxidants, as well as alpha lipoic acid, CoQ10, acetyl L carnitine, and N-acetyle-cysteine (which keeps homocysteine down). Oh yes, omega fatty acids.

I had posted on this thread that the sinus guy wanted me to irrigate with Avalox. I was wrong; it's Amikacin. I haven't begun, as I don't have enough information to be comfortable. The mycobacterium is called m chelonae, and I've found just about nothing useful on the web. The cultures are still cooking.

Happy Thanksgiving to all.

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.