bronchiectasis/pseudomonas

Same with other half,  after multiple doses of pnuemonia PA was confirmed via lung washing and because it is antibiotic resistant,  augmentin and doxycycline. Don’t work started ciprofloxacin and azithromyacin, this combination has been working well.   Flutter device is a must.    Coughing up rubbish is largely reduced, has put weight on again with the down side  being a little more breathlessness.

good management, exercise, good diet and having the right drugs on hand when needed seems to be the key.

 

I had a bronchoscopy in Sept 2017. I know the equipment was not cleaned because I heard the pulmonologist say to the nurses  while I was in a light sedation that "it looked like they didn't clean this". This is the first thing I said to my husband when I met him at the door. The bronchoscopy showed thrush in my throat which was treated with an antifungal. The sputum test from that bronchoscopy showed no pseudomonas at that time. It took a week to get the results and I was happy to hear that even though I didn't know what pseudomonas was at the time. In December 2017, I started getting really inflamed and thought I had the thrush again.  I got checked by my pulmo doctor, my allergist,  and an ENT doctor.  No thrush. By this time, I had already changed my Pulmo doctor and kept writing him notes about my change in mucus expulsion. I had changed GP doctor's and in February, my new GP ordered a sputum test which showed the pseudomonas. I have had one episode, but it doesn't look like the Cipro worked because I have started to have chills this past week so I suspect I am in the early stages of the infection. Over the past 3 months,  I have started having general health problems like hip joint issues, arthritis in hands,  thyroid out of range, new BP meds, anxiety that required an anti-depressant, etc. Please note that I had a mild case of bronchiectasis with moderate asthma before the bronchoscopy. I was so stable up until the thrush, but should have never had the bronchoscopy.  It has ruined my life. I am desperate for a super bug antibiotic. The FDA has refused to accept (without further trials), the new Cipro drug that is inhaled. Britain is considering it and if they approve it, I will seek it out there, God willing. Does anyone have any supplements that they know can help me? I take lots of vitamins, but was hesitant about the oregano oil. I read an ad that said it gets rid of PA. Please respond with your notes....

I have spent a ton of my money on all kinds of vitamins and new equipment. I have thrown away all my old nebulizer cups, acapella, etc. I have been to so many doctors for various things that it is unbelievable  how my life has changed in 7 months. I was walking 3 miles a day 7 months ago.  Now I am using a cane to get around. I am waiting for the weather to get warm so I can get in the pool for exercise. I am a wreck.....

My husband passed away 3-14-18 he had more things wrong with him and he died of a tumor in his throat.

Dear Margaret,

I am very sorry to hear that news. I hope that you are managing well and have many around you who care.  I was hoping to contact someone who knew how to manage this awful infection.

Blessings,

Mary Ann

hello i have bronchiectasis and pseudomonas, and i have been on gentamicin for 7 months, i did a sputum sample today and it showed mucoid pseudomonas heavy growth and just had a good cry. 

i don't know why i can't shift this bug, and what's bizarre is that my sputum is clear in colour ? i am only 25 years ago, depressed and feeling like there's no hope. 

Please do not feel hopeless.  I have done a great deal of research and am finding so many things that are in the pipeline for those of us with this horrible infection called pseudomonas.  Fortunately for you, you are only 25 years old and are probably in good health other than this infection.

I have one friend who is looking into the University of Birmingham's method of treating it with something like dialysis, but it is with blood.  . 

There are many antibiotics that are in their final clinical trials and we could see them patented in the next year or so.  Please keep praying that something will be fast tracked for us who have this  problem.

Hi Carol,

Are you in the states?  Where do you find a FDN?  Is she a Naturopath?  I have been taking the things my naturopath recommended and so far, not much has worked without getting hives. I don't know where I am at the moment....

I have bought and used liposomal vit C, liposomal Glutathione, etc based on some suggestions from Bx and PA patients who are stable at the moment.

I am having a bronchoscopy in 2 weeks so then I will know more.

Keep praying  for the cure that is coming.

Glad that you are looking upwards and not hopeless. There is help coming our way.  Stay confident that there will be something for us due to the governmental push on pharmaceutical research to discover super antibiotics to tackle super bugs like PA and MRSA. You are young and have a good life ahead.

Blessings,

Mary Ann

Sending love to all fellow sufferers and hope the UK people are coping with this hot summer. I hope that research will find treatment s and drugs to make our symptoms easier but of course there can't be a cure. Bronchiectasis means our lungs were damaged by something and the damage has been done. What we can do is find ways to work with it. Sometimes that is far easier than others. I have lived with it for so long that I don't know what it's like not to have it but it hasn't beaten me yet!