Diagnosed with pseudomonas aeruginosa infection in my lungs

I have pseudomonas. The only reason I found out is I pushed for a sputum test. Levaquin and prednisone did not heal it in August. It’s been ongoing. My pulmonologist has “checked out” I live in a small town and am tying to get a referral to another city where a pulmonary doc will actively help me. My O2 levels are between 89-92 constantly. I am losing weight and tired all the time. I am also tired of coughing up copious amounts of thick dark sputum, often with blood. I finally got the results and doc called in Levaquin 750 for 5 days! I don’t think that is doing it. No nebulizer, no prednisone, just Levaquin. I have enough to take it for 10 days due to RX from primary care doc. Should I take it for 10 days? I want this gone! Also prednisone is a double edged sword, but it helps with breathing and the inflammation. I have enough of that for another 5 days. Any comments will be appreciated. Also, primary office is in a flux, three different PA’s in four months. Last one I have not even met. Probably no feedback from her. They don’t know a lot about Bronchestasis and have told me so. Thank you!

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Oh, lack of competent care is stressful when you are already feeling ill.

Can you give us all an approximate location - maybe you can ask for referral to Mayo, National Jewish Health, University of Texas, Tyler or another place specializing in Bronchiectasis. Or, if you continue to get worse, maybe it is time to get to the emergency department of the nearest large hospital with a pulmonary unit?

Sue

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Thank you Sue. Yes, care is hard to come by in small towns. I will closely monitor myself, I have been doing a lot of reading thanks to this group!
I live in Grass Valley, CA. About an hour and a half from Sacramento, in the Sierra Nevada foothills.
I found a pulmonary doc in Auburn who is booked out three months, I am on the list. UC Davis is a possibility but they also are saying it is a long wait to be seen.
I am going to continue the Levaquin for a total of 10 days I have seen a change in the color of the sputum, it’s lightened somewhat.
Thank you for responding. 😊

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Sounds like this is the second time you are taking the Levaquin? This time without the prednisone? Usually with Pseudo levaquin is prescribed for 10 to 14 days. How long did you take the levaquin the first time? Did it make you feel any better at all in August? Did you have any side effects? It is a strong antibiotic but easier on the system than Ciprofloxacin supposedly. Cipro usually has the best track record with Pseudo of the two. But Pseudo is very difficult to "get rid of" . Usually you can only knock it back. At any rate you really need to find a pulmo who is familiar with things like MAC and Pseudo. I have chronic Pseudo. Using a nebulizer and hypertonic saline 7% twice a day is essential.

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Thank you so much for responding! I had two rounds of Levaquin in August, along with Prednisone. The dose of Levaquin was only 250 mg. After 10 days, I was still no better. I went with no antibiotics until now, and just felt like crap.
Finally got a sputum test and was put on 750 mg of Levaquin a week ago. First antibiotic since August. No side effects noted though. No Prednisone, but my former PA had sent a prescription in for Pred, so I took it. Yesterday, my 7th day on Levaquin, I was coughing up impressive amounts of sticky mucus, not as dark as my normal, but with a teaspoon or so of blood each time. Bright red. I figured I broke a small vessel. Who knows.
I’m pretty discouraged at this point. Pulmonary doc has never suggested a nebulizer, no other treatment at all other than rounds of Levaquin. He has never prescribed Prednisone, I would go to Primary care office where I could at least be seen. Pulmonary doc only works two days a week. If you get sick, you can not get in to see him. They tell you to go to urgent care or primary care doc.
I am trying to get in to another pulmonary doc in the next town. I got the referral from primary but it is a process.
It’s a battle for sure. I’m tired of feeling sick all the time, no appetite, losing weight.
I am wondering if I am reinfecting myself too. Can Pseudo live on toothbrushes and drinking glasses etc. , will the dishwasher high heat kill the bacteria? So many things to learn about it. Meantime, I will continue to advocate for myself and keep muddling through. 😊
Thanks again for your response!
Take care, Mary

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Pseudo is just hard to treat so you probably are not reinfecting but who knows! I guess it is everywhere. If you keep coughing the blood can't you check in with the Pulmo? 250 was pretty low so I can see how 750 would work better so far? Anyway good luck and keep us posted. You really need guidance from a Pulmo who has treated Pseudo. You may have to travel to find one. No gastro effects from the Levaquin or tendon issues? That is impressive to me!

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Thank you so much for responding! I had two rounds of Levaquin in August, along with Prednisone. The dose of Levaquin was only 250 mg. After 10 days, I was still no better. I went with no antibiotics until now, and just felt like crap.
Finally got a sputum test and was put on 750 mg of Levaquin a week ago. First antibiotic since August. No side effects noted though. No Prednisone, but my former PA had sent a prescription in for Pred, so I took it. Yesterday, my 7th day on Levaquin, I was coughing up impressive amounts of sticky mucus, not as dark as my normal, but with a teaspoon or so of blood each time. Bright red. I figured I broke a small vessel. Who knows.
I’m pretty discouraged at this point. Pulmonary doc has never suggested a nebulizer, no other treatment at all other than rounds of Levaquin. He has never prescribed Prednisone, I would go to Primary care office where I could at least be seen. Pulmonary doc only works two days a week. If you get sick, you can not get in to see him. They tell you to go to urgent care or primary care doc.
I am trying to get in to another pulmonary doc in the next town. I got the referral from primary but it is a process.
It’s a battle for sure. I’m tired of feeling sick all the time, no appetite, losing weight.
I am wondering if I am reinfecting myself too. Can Pseudo live on toothbrushes and drinking glasses etc. , will the dishwasher high heat kill the bacteria? So many things to learn about it. Meantime, I will continue to advocate for myself and keep muddling through. 😊
Thanks again for your response!
Take care, Mary

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Yes, pseudomonas can and will live on plastic surfaces and metal. That's how most of us got it. From tubing or instruments.
You can use disposable tooth brushes.

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Non cf bronchiectasis. She cured my mac infection in 2 months and kept me on antibiotics for another year. I have pseudomonas and we tried treating it but the drugs for it are inhaled 2 weeks on and two weeks off or a month on and off. My bad lungs won't tolerate anything inhaled into them so we're not treating it except for airway clearance. I send sputum samples to her 3 or 4 times a year and have had video appointments. She left Chicago February 2020.

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