Another day, another round of pneumonia...
 

What is the deal??? I have been through an injection of Rocephin, 17 days of Keflex, and still I have problems. The Urgent Care doc made me come back in this morning and "Voila," now it is pneumonia, sooo I get a double injection of Rocephin and a round of Levaquin...

What else is left after Levaquin? I am getting really worried about taking all of these antibiotics. I was already on Doxycycline before this all started...

Frankly, I was wondering if this could be the Sjogren's affecting my lungs... Anyone know if that looks like pneumonia on X-rays???

Cathie

pneumonia can be caused by
 

fungus.

http://www.merck.com/mmhe/sec04/ch042/ch042d.html

There was an epidemic of blasto... at our vacation location a couple of years ago. A man died, and many dogs. A friend's dog lost an eye due to it.

If this is becoming chronic, and not responsive to antibiotics, you need to see a specialist.

My MIL had Valley Fever when she moved to Calif., many years ago.

HI Cathie, I agree with Mrs. D.......you need a specialist to take over and get to the bottom of all this. All those antibiotics are really bad for your body. Are you taking Probiotics to combat what the antibiotics are doing to your body? If I'd taken that much antibiotics I'd have a roaring case of yeast infection :(
I hope you get this figured out soon!

And that connection--
 

--as Roxie mentioned, needs to be checked out; all the antibiotics you have been taking may have altered the natural bacterial/floral balance in your body enough for an opportunistic fungal attack.

This would be made more likely by having been in warm, moist conditions, or being near damp grounds . . .

don't think so
 

Cathie,
Sjogren's doesn't "look like" a disease on xrays. But it could be affecting the elasticity. With Sjogren's sometimes the lung tissue is affected. And Sjogren's and the prednisone will make you vulnerable to an opportunistic infection. Sure hope you get to feeling better soon.

Billye

See a pulmonologist ASAP. I had pneumonia the spring of 2006 that almost killed me. It was probably caused by mold. Two lung biopsies were inconclusive. I'm still not 100% recovered, and have a golf ball size scar that looks like an octopus from the damage the fungus caused. If you have fungal pneumonia, antibiotics will not help. You need a CT scan to see the specific location and extent of the pneumonia, and if a biopsy or PET scan is needed.

Pneumonia is life threatening and can rapidly overwhelm your body's ability to fight back so please err on the side of aggressively getting a conclusive diagnosis and appropriate treatment.

Yuk...
 

I think I am going to have to quit googling. Apparently, there is some connection between Sjogren's and various types of pneumonia, at least on occasion... I can't even tell you how many times I have gotten this, and I am pretty sure it has always been when I was trying to reduce my steroids...

I am going to try and get to the bottom of this ASAP... I bet there is not one single bacteria alive in my body after all of these antibiotics, good, bad or otherwise... Today, I took so many pills at breakfast, there was hardly any room for food... Well, maybe a little... :)

http://www.chestjournal.org/cgi/cont...act/130/5/1489

Cathie

sarcoid...
 

Please read this also:
http://www.stjohnsmercy.org/healthin...re/sarcoid.asp

If you have flares of this when decreasing steroids..sarcoid is a possibility.

I would seek a specialist rather than Urgent care for this lung issue.

Another good link:
http://noairtogo.tripod.com/sarcoid.htm

and:
http://dermnetnz.org/dermal-infiltra...rcoidosis.html

Cathie? I have to agree with Mrs D....
 

After all, it was a 9 week bout of pneumonia that led to my issues now...If it were me? I would be literally flipping out by now! Wonder why....

Please get your gp to recommend a pulmonologist as David suggested, and all that Mrs D and Billye have as well. Fudges! I want YOU well, not hacking your innards out, not eating, not keeping anything down even when you try..Been thru that food processor a few times in past lives - and I'm not sure how well I'd fare other than being put into a hospital or 'rehab' - and we all know SICK people are there! Might catch something in those places! Honestly you do not NEED this nor do you DESERVE THIS!

Be quietly ASSERTIVE and pro-active...no one else is gonna do it for you. Tho in all honesty - I wish I was there to help!

Go get them all good lady! - j

OK, I will get on this in the morning. I don't feel like pneumonia. I have had it full blown badly enough to be hospitalized twice, and felt like I had been hit by a Mac truck...

I don't know about the rest of you, but getting help here at night, on weekends, or in a hurry if you are in a bind, is not easy. A lot of times, doctors just tell you to go to the ER...

I have gotten better treatment at one particular Urgent Care center here which is staffed by 2 GP's. He insisted I come back and he wants me back again this week. They seem thorough, good about followups and are a little different than other centers I have seen like this, as they take regular patients too-not just emergency situations.

Do you all think that GP's are less knowledgeable overall than Internists? My care is so disorganized. This GP is leaving the Urgent Care to join an already established family doc practice. He was trying to explain something about the use of shared electronic charting between docs to help accomplish organized care.

Cathie

Today could have been better... It started out with not being able to get the X-ray or radiology report in time for my pulmonary doc to see me...

After complaining repeatedly to the hospital attached to the Urgent Care, that I NEEDED IT TODAY, they finally got it for me but too late for the doc today.

In the envelope, was a preliminary report which states findings:

RML (I take it this is right middle lobe) atelectasis
vs.
pneumonia...

I know the middle lobe of the lung can cause great problems. I would bet on the atelectasis, but hope for a form of pneumonia that responds to something. Can't say the Levaquin is doing a lot of good...

Cathie

Why would you have atelectasis? You still need a CT scan and specialist I think.

My pneumonia was in the upper right lobe, with NO coughing. I was weak, losing weight, and had difficulty breathing. I also had moderately high temperature (about 101-102) for about three hours every afternoon and low temperature the rest of the time. The lung sounded almost clear by stethoscope. How misleading. A chest X-ray showed a dense area, and the CT scan looked like I was growing a space alien. It was pretty inaccessible by thin tube or bronchial biopsy, so they never got a sample of the lesion, but did pick up 1 (only) adenocarcinoma cell. With a negative PET scan, it wasn't worth the risk of open chest surgery to biopsy the lesion. At least yours is in a more accessible place.

With peripheral neuropathy, you face a different future than you imagined. With the possibility of lung cancer, your future hits you in the face like a brick wall. I started planning for the worse.

My cats were great, just hanging out with me day after day, week after week, quietly affectionate without being demanding. I'll be grateful and devoted to them for the duration of their or my life. It's so worth it living with companion animals.

Good luck, and please continue to keep us informed. I'll be thinking about you until this is resolved.

Well, duh?
 

Thing is that by the time THEY find out what you KNOW [I'm believeing here] You might just end up in the hospital!
Golly GOSHES!!!!! I hate going/being there with all those really contagious sick people! ?
In the meantime, I understand the need and uses for LARGE QUANTITIES of Kleenex! Where do you want me to send it?

During it all, just be sure to put lots of Vaselene on your nose --but w/a q-tip so you don't spread or share! With yourself or anything else! :Sigh: Hang in there! Hugs - j

Thanks all. I am seeing the Pulmonary Doc today. This was the soonest I could get in. I will address the Sarcoid, MrsD.

I don't know if it is atelectasis or not, but I sure don't feel like I did when I had full blown pneumonia. I am not running a temp, but have some crackling in the lungs. Even before, when the doctor thought I was developing early pneumonia several times, I felt horrible. This doesn't seem to be like that. I have an extremely productive cough. The X-Ray loooked white and the doctor did mention mention some plugging... My lungs are not the best.

Since I have taken 2 Levaquin, my right eye hurts, there are some sort of black things in my eye and some flashing lights. I will not take another one, until someone can figure out what is going on here.

Thank you all for you support.

Cathie

Hi Cathie:

"atelectasis"

I learned a new word today. I have to look this one up. I have no idea what this is.

I just wanted to stop by and send you warm thoughts and hope everything comes out okay.

Take care,
Melody

I spent most of the morning in the Opthalmologist's office; the rest in the Pulmonary Doc's. Here are the findings: Detached vitreous (eye)... Atelectasis of the lungs... MrsD: He did not think it was Sarcoidosis.

What next???

By the way, the eye doc did not feel this was associated with Levaquin. I don't know about that... Sure are a lot of people complaining about side effects...

Cathie

Question
 

Cathie,
I have searched for the word ateleclasis. I can't find much on it. Did the pulmonary doc explain what it actually is? And what is he going to do about it?

Billye

Cathie
This advice is from the Healthscout site. It sounds good advice to me.


Questions To Ask Your Doctor About Atelectasis

Is there a collapse of lung tissue?

Have you found airway obstruction?

What is the probable cause?

Is there any problem outside of the lungs that may be a contributing factor?

What are the treatment options?


Take care and good luck
Tony

I think you may have mispelled this, Billye. It is Atelectasis. :)

Lungs are like upside down trees. The trachea (trunk) travels down the front of the neck, becoming primary bronchus, which branches out left and right into secondary bronchi, and in turn branches into smaller bronchi, terminating in tiny alveoli. This is where gas exchange takes place in the lungs. (Oxygen goes in here & CO2 goes out.) Fluid from pneumonia or other causes can fill these alveoli, causing mucus plugging and collapsing the little alveoli containing the mucus within. Infection can become a real problem.

I am not sure of the cause, other than he mentioned inflammation, I would guess chronic bronchitis. The treatment? Why am I not surprised? More steroids... Because the inhaler and nebulizer cannot reach the involved areas as they are closed off. He seemed pretty upbeat about it clearing up and did not feel it was Sarcoidosis. He has always been a very good pulmonary doc, so am hopeful he can clear this up for me.

I should have asked my husband to go, since I did not ask nearly enough questions and he is good at remembering what is said. I was really bummed out today though. The eye thing is scaring me... Driving into oncoming headlights tonight produced the flashing lights in the right eye. The doctor said if it gets worse to call immediately, as this can affect the retina...

I was hoping that MrsD might come along and comment on the antibiotic issue being related to this. Meanwhile, thanks to the rest of you who posted.
Cathie

yes, the Levaquin..
 

may be the culprit:

http://www.fluoroquinolones.org/PART%20XI.htm

Levaquin penetrates the eye vitreous...it is used for trauma with infection to the eye.

Two days however, seems like a short time, unless you had this drug recently (within the year) before.

Levaquin has been prescribed for me at least twice that I know of since the first of the year. I don't know about last year...

The doctor said this is also going to happen in my other eye. I am so distraught over this. I have enough health problems without having to worry about my vision being seriously affected.

It seems there is nothing I can do to help it...

Cathie

don't worry yet....
 

It may not happen in the other eye. I've had doctors "predict" dire things for me... like my left knee will blow out in 5 yrs (that would have been 2004) and it hasn't yet. And that my right knee needs a replacement (but it doesn't after all the SAMe I ate, and repaired my cartilage).

That I had 50:50 chance of dying with my C-Section. That my son would never drive a car... etc. none came true for me. They are not gods you know!

So hang in there!

Hi Yorkiemom,

I've just read this thread, and have only one thought to add---if it's atelectasis, it means you aren't breathing deeply enough to get lots of air into the entire lung. So buy some balloons and blow them up, or get a thingamajig from teh pharmacy that people with asmtha blow into (though I think balloons are cheaper) and breath DEEPLY.

In terms of your eyes---we are liable for coincidental things, and people get vitreous detachments all the time. I don't think it has to happen again. I had one about 25 years ago, and never again. The doc thought I bounded down the steps too hard and knocked it off. Imagine bounding like that now? Nah.

But it never happened again. I wish you the same.

I have calmed down a little, although I still think the Levaquin was responsible, especially after reading MrsD's link above and some of the other reports on the Internet. The flashing light was not as bad when I drove today, but then I wasn't driving into a lot of oncoming headlights. Maybe tomorrow will bring better news.

I wish the spider web looking thing would go away though. I keep thinking it is a hair in front of my eye. If you look directly at it, it runs and at times, it looks like a mosquito...

Don't you guys ever get on overload with sooooo many health issues? Sometimes I am just overwhelmed with all that happens with me.

LizaJane: What did they do for your Vitrous Detachment? Do you still have spots or flashes or did they resolve? The eye doc kind of scared me when he started talking about retinal issues. Is there anything at all that helps?

Thanks,
Cathie

i was given avalox in 2004 when i was hospitalized for 5 week chronic respiratory infection/ constant asthma wheezing extravaganza, i was seeing things on it and it made me feel much worse. Not full fledged hallucinations but rather seeing things out of the corner of your eye or far away move. Avalox is in the same family (quinolone antibiotics) as levaquin. I never had that kind of a problem on levaquin.

Last night, I noticed that my hearing is off. I have no idea if this is related or not, but it sure seems funny that everything that started Monday, has affected different areas of my head.

Cathie

I'm so sorry for all your going through. Sending many thoughts and hugs first. Could the hearing be from the pneumonia? Maybe you should call the doc on the phone and adress these new concerns. I know it can be hard to get a call back but better safe then sorry. I'm sorry I don't have much to add but your in my thoughts and I care so much for you.

Hearing
 

Cathie,
With Sjogren's, the mucus is thicker and doesn't drain well in the sinus/nasal area. And if you have pneumonia you probably have some mucus in the sinus/nasal area too. Use your sinus wash and see if this problem improves. And coughing could have detached the vitrious. At our age, :p it was probably ready to go anyway and you just hurried it up with the coughing.

You could do this while you are waiting on the call from the doctor.

Billye

Thanks all. Head is a little better this morning. I can almost hear again normally. Still feel pretty rough.

Doc said yesterday he wants me to go back to the school and get someone to do a bronchoscopy. I think he was taken aback at all of the antibiotics I have been on in the last few months.

Cathie

http://www.askapatient.com/viewratin...&name=LEVAQUIN

Back to square 1. Yesterday, the Internist put me on 30mg of Prednisone. Ears are blocked, eustacian tubes not functioning correctly, lungs are a mess and of course, the eyes have not changed.

I still think the one common denominator in the whole mix is the trigeminal nerve and the possibility it has been affected or damaged. Had I even read part of the above site, I would never have taken this drug, whether it is responsible or not. While this nerve has no effect on lungs, as far as I know, it does have neural control over parts of everything else that is going on here. Sinuses, ears, vision, etc...

Granted, not many people are complaining there about vision issues, but if you look, there are some with: floaters, trouble focusing, flashing lights, various neuro issues and then some.

Cathie

one has to be careful
 

about that site.

People post all sorts of stuff...not all of it may be true.

Levaquin is not an innocuous drug but compared to dying of some infection,
it might be necessary for some. The trick is for the doctor to do what you need, not what some salesman encourages. And for a PN patient, Levaquin may be a poor choice. But then there are not many options left, besides IV if that happens.

I read that site when I started on Zetia this summer. And not ONE thing mentioned on it happened to me. There are horror stories galore there.

I think in your case, Cathie, you should be evaluated for other causes of pneumonia/pneumonitis.

I know this is on a different note but still may help about all your docs comunicating. Have you made any progress? I was thinking if maybe a few minds worked together and also about possible interactions between everything that is going on. Sending still many thoughts and a million hugs.

Nope. No one is really talking to one another. This causes so much stress on top of feeling badly.

The Internist will want a bronchoscopy done, he has already mentioned this. Maybe then, docs will start talking. Getting an appointment for this is another thing. After my last experience with the pulmonary dept. at the med school, I am not so keen on going there. Besides, they said I would have to wait until February. I don't think this can wait..

Is there anything over the counter anyone knows of I can try to open up my head? I fear it may be neural involvement with the eustacian tubes causing this, but have no way to tell... Ears and head are totally blocked and feel like they are ready to explode... Any one good decongestent better than another?

Meanwhile, 30 mg of Prednisone has turned me into a bigger witch than I already am...

Cathie

sinuses
 

I get constant sinus infections, Cathie, and each time the sinus guy endoscopes my sinuses to find the organism and figure out which antibiotic to use. When I have them, the only way antibiotics work is if I have some prednisone at the same time, to decrease the swelling and give the antibiotics a chance to get in.

I dont' know about the floaters, but LOTS of visual symptoms come from medications, and not often from anything nerve related. And if you're not on gentamicin or another micin drug, that wouldn't cause the hearing problem. That's probably from the sinuses.

So irrigate irrigate irrigate, and let them search for organisms (It's way harder when you've already been partially treated).

I use the Grossin Irrigator, and my sinus guy likes it because it gets a large volume going and going in the right direction. You might google it and check it out.

I know how totally lousy these things feel, and hope only the best for you.
It's is in your head; your sinuses. It's also in your chest, apparently, not uncommon with sinus infections or with sjogren's.

Hope this helps...

Oh, and dont' forget the deep breathing for the atelectasis/pneumonia. You need to use a plastic tube that you get in a pharmacy, or balloons.

Groan... I had 2 doctors' appointments today. My ears are a mess now and it is affecting my hearing. Hearing test-not good, rt. ear hurting quite a lot, eustacian tubes are a little open, at least. I can see some improvement, but still have a very productive cough though not as deep...

ENT nurse practioneer agrees about the sinus/ear connection. My Internist doesn't think I have a bacteria one in my body after all I have taken.

I do have the Neal Med Irrigator, which Billye recommended for sinus irrigation and a bunch of balloons. Party anyone? I think I will have to take a raincheck on that...

I have so much to focus on, I am trying not to think about eyes. One of my main concerns is-How in the world am I going to get back down from a dose of 30 mg of Prednisone?

Hanging in there,
Cathie

I fear I am in trouble. I have not had to be on this much Prednisone in 15 years. At this dose, I should feel no breakthrough pain, but it is there, in full force this morning. I suspect this is being driven by an infection.

No one has done any bloodwork or cultures. Treatment for the RML atelectasis and ears has been based mainly on X-Rays and visual inspection of my ears under the microscope. I am not currently on any antibiotics. My Internist is trying to manage the atelectasis, but is not in the office today.

Drainage from sinuses last night was greenish, although today, it is more clear and blood-tinged.

So where does one turn next? My way of thinking is that this is where people can get in a LOT of trouble, when the steroids mask at least part of what is going on...

Cathie

something to consider
 

I don't know, Cathie, if you have tried Singulair?

This is an anti-inflammatory/anti allergy drug that is very effective.

I have been using it for over 3 yrs for fluid in the ears and allergy issues from work (the drugs I cannot avoid being exposed to that I am allergic to).

Originally Singulair was intended for asthma, but lately it has branched out into the allergic area, and I personally think it is more effective than antihistamines.

One cannot however, switch rapidly from steroids to it. A careful taper must be done. But for maintenance for breathing/sinus/ear issues, I think it is extremely useful. So think about that, and bring it up to your doctor next time you see him/her.

Interesting point, MrsD. I have used it before, although the Pulmonary Doc never said anything about tapering. Why does this have to be tapered?

He did not bring up using it in my last visit. I will address that with him or maybe the NP. ENT Nurse Practioneer put me on Astelin nasal spray and Nasonex.

Today, she did bloodwork, cultured the nasal cavity and sent me for a CT Scan of sinuses. She can see large strings of (yuk) yellow mucus hanging down the back of my throat.

I had thyroid surgery Aug 16th. My first trip to the Urgent Care was 9/13. I have had 10 doctors' appointments including that one, since then pertaining to this... Enough already...

I swear, I don't know if additional steroids are helping or hurting...

Cathie

patients who are on high dose steroids...
 

who are switched to a leukotriene B4 blocker, can have reactions.

There are two drugs in this family... Accolate (twice a day)
and Singulair once a day.
People on high dose steroids (common is severe asthma) have had this reaction:
Churg-Strauss syndrome

But it is pretty rare.

One has to take the med every day, even when feeling well, skipping around on it doesn't do much good. It has been fabulous for me.

culture
 

Keep calling and bugging them about the results of the culture.

You're ill with a bad sinus infection, and it's probably the cause of the atelectasis. All that ***** junk in your nose irritates the lungs. You need to be on the correct antibiotic, and you need high volume irrigation. If you've got the water pik irrigator, use it 3 x/d, fill it up to full with the salt.

I like Breathease, as the salt is premessured, but if you don't have that, get a recipe for making the saline.

Add Alkalol to it, as much as is comfortable.

Consider adding a DROP or two of peroxide, not more.

mucinex or generic.

Go to http://www.sinuses.com/ and read about how to irrigate. This is probably the most important thing you can do for yourself. (PS. that's my doc's site.)