Hi again Mark,

I've been culturing haemophilus. In October I was on Augmentin for 10 days. Flared up again with in week and did 10 dyas of levaquin. At that point my doc wanted to do an additional 10 days of Augmentin consecutive after the Levaquin because the h-flu is sensitive. My first dose I had a reaction with hives and swelling so no more penicilin for me. My doc was out of town for 5 days and the on call doc was clueless and wouldn't prescribe a different anitbiotic. Here I am less than two weeks off the Levaquin coughing up crap again. Needless to say I'm really frustrated with that whole thing.

I'm getting my sinuses washed out in two weeks at the ENT's office. Hopefully that will give relief.

The first edition of the PCD Foundation Newsletter "PCD News" is out on the PCD Foundation website. It has great info and I'm giving it to all my docs.

Take care and keep in touch.
Lynn

Quote from usrmmrn2:

Hello,

My name is Mark Robertson I am 40 years old and I too have Kartageners Syndrome. I have a great Doctor that keeps a touch on me. To my understanding as long as you keep infection down and when an infection arises handle with a sense of urgency with “high powered” antibiotics. Please correspond with me and I will provide more information.

You had mentioned your lung had collasped. Please tell me more...how are you doing? How old are you? What do the Doctors say? Do you take anti biotics

Sincerely,

Mark Robertson

Hi my name is Rachel. I had a bronchoscopy on Halloween for a bronchial biopsy to rule out PCD. I've had recurrent bronchitis since January which grows only Haemophilus influenzae, Streptococcus pneumoniae, or both at times. I too have had quite a time trying to get rid of the Haemophilus. I've been on two different kinds of Augmentin (875mg and the big 1000mg), Biaxin/Zithromax (which does not help at all), and Vantin. I think Vantin helps the most. I've had CT scans done which ruled out situs invertus, so I may not have PCD, but we'll see. I don't have bronchiectasis, but I do have right middle lobe atelectasis and some other scarring. About how long did it take you to be diagnosed from a bronchoscopy? My doctor sent the biopsy to the Mayo Clinic.

Quote from swimfast989:

Hi my name is Rachel. I had a bronchoscopy on Halloween for a bronchial biopsy to rule out PCD. I've had recurrent bronchitis since January which grows only Haemophilus influenzae, Streptococcus pneumoniae, or both at times. I too have had quite a time trying to get rid of the Haemophilus. I've been on two different kinds of Augmentin (875mg and the big 1000mg), Biaxin/Zithromax (which does not help at all), and Vantin. I think Vantin helps the most. I've had CT scans done which ruled out situs invertus, so I may not have PCD, but we'll see. I don't have bronchiectasis, but I do have right middle lobe atelectasis and some other scarring. About how long did it take you to be diagnosed from a bronchoscopy? My doctor sent the biopsy to the Mayo Clinic.

Hi Rachael,

I'm just wondering how you made out with the biopsy? Did you get the results yet? I know it can take 6 weeks. Hope you're doing well.

Many Smiles
Lynn

Hi, this is Rachel again. I'm probably under a different name because I was banned or something on my other one. Maybe it's the same name though. Haha.

I haven't gotten the PCD biopsy results back yet. The dr. said they take a long while to come back. I have had some sinus problems: chronic maxillary and ethmoid sinusitis. I'm seeing an ENT for that. I have been tested for CF twice, one came back at 28 and the other at 11. (must be those potato chips :p )Not a whole lot of ear problems though. Just a rare case of swimmer's ear...but I swim 5 days a week, so I guess that'll do it.

I've had asthma since I was about 8 years old, and I've been taking Advair 250 and a bunch of other things.

Right now, I'm STILL culturing the same old stuff. I had a fever two nights ago at about 102 and I'm taking Augmentin yet again. That's after stopping Ceftin and Rifampin for 6 days. (by the way, the Rifampin was to try and stop the growth of the bacteria, not for TB!!) I might also have some antibiotic resistance. :(

I've also been tested for GERD with a 24 hr. pH probe, which showed significant reflux. I go for some esophogram test or something soon to check for some anomaly.

One thing that I really don't like, is guaifenasin (sp?) Argh, I don't even want to mention that stuff.

My dr. recommended chest pt a few times a day, and that seems to help. Do you use the Vest? Is it real expensive? I'd like to get something like that so my mom doesn't have to pound on my back. :eek:

I'll let you know when the results come back. Meanwhile, take care!

Hi:)

The generator part of the vest is heavy. Every time they make a new model it seems to get a bit smaller. The newest one is really small. I checked it out at the PCD Family day last year. One thing that is fun that gets you coughing up stuff is jumping on a trampoline. It would be fun to get one.

For the lung stuff I took 10 days of Augmentin, 10 days of Levaquin, 1 dose of Augmentin which I ended up being allergic to (the hives where hysterical :jester: ) and 30 days of doxycycline. After that I took 20 days of Levaquin for the sinuses.

I sure hope the sinus surgery works. It will be my first one. I'm having endoscopic surgery with 3-D guided imagery. I had to wear a headset to the CT scan that they use for the 3-D images. It's kinda cool. The sinuneb is really awesome. It's a nebulizer for your nose so to speak. It's for inhaled antibiotics. The idea is to get the antibiotics to the areas you need them as opposed to orals that have to go through your body. I have several friends that use it. My ENT suggests it for use after surgery. I have too much blocked- in there right now for it to work.

I hope you get a definite answer on your biopsy. Do you know where they sent your biopsy to?


Stay warm and keep in touch :)

Hi Rachel,

I have the 2nd to last model of The Vest. The vest part itself comes in different sizes. There are two styles as well. There is the full size which looks like a life jacket and inflates all around. The second style is the chest vest. It's shorter than the full size and only inflates in the front. I use both. The chest vest is more comfy for me but sometimes when my side is hurting I use the full size cause the vibration feels good on it.

Teh long use of antibiotics for this last infection was short of comical. My pulomologist switched practices but my records didn't. When I started getting sick I couldn't get a hold of the doc. I called the old office where the records were to have them transferred and they gave me 10 day samples of Augmentin. No culture was done. I did get ahold of my doc after that to give him the scoop. Since I was already on the antibiotics and improving there seemed little point in doing a culture. He did give me cups and lab sheets to do a culture after the antis were done. I dropped off a culture and about a day later I was feverish and ick. I called the answering service and my doc was out of town but the on call doc prescribed Levaquin since it was a broad spectrum anti until my culture results came back. My own doc called me and told me my culture came back with 4+ for haemophilus influenzae. He told me to finish the 10 levaquin but after that he was switching me back to the Augmentin for an additional 11 days. I need a longer course(21 days) to kick the bug to the curb. I did that and when I took the fist dose of Augmentin I broke out into hives. Of course this was over a weekend and I had to call the answering service again. My doc wasn't on call and the guy I talked with wanted to wait until he got to the office to look at my chart. That was fine since he was not familiar with me. He got to the office and told me he didn't feel I needed the extended course of meds...ARGHHHHHH. HE refused to even listen to me. I told him what my doc had set up. Anyway when my doc got back it was 5 days later. He wasn't happy that I was off the antis and said to let's just wait and see. Well 10 days later...sick again. Still the h-flu. He put me on 30 days of doxycycline and that did the trick. We now have a better protocol set up for the future and the other docs are now aware of me. After I got off the doxycyline my sinuses kicked up. I had the sinus tap done which serves two purposes- one to get a culture and the other to lavage the maxillary sinuses. My stuff was really thick and not budging. I think that kicked up the infection. That's when I started on the 10 day of Levaquin again. About a week after that was done I had an other sinus infection and another 10 day of Levaquin. I just finished it a few days ago. I hope my sinuses behave until my surgery on the 3rd.

Everything you cultured for is common in PCD.You have so many classic PCD symptoms but that doesn't mean you will have and I hope you don't. S Aureus is Staphylococcus aureus. When they do the cultures they assign what you culture a number using a 1-4 scale. Like with me and the H-flu 4+ is high. If you want to read more about cultures there was an article in the PCD Foundation newsletter called "Know what you grow" It's kind of a lay persons overview...kind of:)
Go to [url]www.pcdfoundation.org[/url] and the link is on the first page.

Yikes this is really long...hope you are still awake...LOL

Many smiles
Lynn