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Oct 6, 2017 · Do Bronchiectasis and MAC go together? in MAC & Bronchiectasis

WW,  I have gone thorugh my tipical "try this try that" cycle. My insurance doesnt pay for any out of network medical care and I can not get a good idea how much just a consult would cost since most conults want their own teats and labs, etc. If I could
get a firm dollar amount I would feel more confident about making an appointment. If you have some information about expensives please let me know. Also let me know how you are doing, I hope well. Looks like the 3rd Gulf storm is headed our way, but is forocast
to be less powerful. If the storm that dumped all that rain into Houston had hit New Orleans we would still be pumping water out of here until Christmas. Our pumps are not enough to handel even medium amounts of storm waters. jo
Russ

May 30, 2017 · Do Bronchiectasis and MAC go together? in MAC & Bronchiectasis

Just what I hope to hear. Have you ever been to the site in Rochester? I tried to make an appointment at JAX and they told me they don't have any for some time, like you said, and refered me to an afiliate site in Pensacola. I work on the "Roman Coin Principal":
the futher you get away from Rome (Mayo) the less recognizable the coins (medical care) are to the coins struct in Rome, so Im setting my sites on Rodchester, since JAX is not available.
Hope you doing well.
Russ

May 27, 2017 · Do Bronchiectasis and MAC go together? in MAC & Bronchiectasis

Hey WW, hope you are doing well. You mentioned "JAX". What is that? Also how long does it take to get an appointment ay Mayo? Im in the process of getting clearance from my doctor and Humana and want to set up an appointment as soon as that happens.
Happy Labor Day,
Russ

May 22, 2017 · Do Bronchiectasis and MAC go together? in MAC & Bronchiectasis

Jamie, thnks for reply. I dont know if you caught it in my text but I was a RN for 30 years, so have to say that I'm not a doctor either.
To answer your question about nasal polyps; I think the surgery was to remove areas of infection.
I have asked my Pulmonologist to give a referral for Mayo to my insurance company. I feel like I'm saying to him that I think I can get better care somewhere else. He should be happy for me right? Sticky situation.
I liked you describtion of Mayo being a coperative experience between the disciplines.
I noticed that Mayo does Stem Cell therapy. My impression is that the success rate is in the lower percentages, but if Mayo is doing it perhaps they have a different success rate. It's $10,000 or more.
I would like to hear more about your experience with antibiotics if you would like to share it.
Best
Russ

May 21, 2017 · Do Bronchiectasis and MAC go together? in MAC & Bronchiectasis

Jamie, I was diagnosed ten years ago by CT. My main complaint was cough. I have always had respiratory illnesses starting at age 12 with a bout with Pneumonia, and continuing with perhaps 10 or more Pneumonias since that time along with maybe 25 or 30 bronchial infections and then asthma in the last 10 years.
After being diagnosed with Bronchiectasis (BX) in 2007 I continued with really only a cough and a few respiratory infections. There was not any dramatic reduction in energy and my asthma was under control. i continued to work until 3 years ago and only stopped to begin to do other things like travel and acting and writing.
This all changed a little over two years ago after coming off of the Pacific Crest Trail in California walking up and down 4000 ft mountains in 105 degree heat and feeling perfectly more or less fine.
A month or so after coming off the trail I began to feel unhealthy with increased cough, sinus drainage, increase phlegm production, but most of all an marked decrease in my energy levels.
I saw a several doctors where I receive my medical care but they were sort of baffled until I saw the doctor who diagnosed me with BX. She did another CT scan of my chest and found what seemed to be a slight increase of the damaged in my lungs but maybe not enough to explain my fatigue.
I was an RN for 30 years so did a little more investigation on my own like being checked for “Vally Fever” which causes symptoms of fatigue and is prevalent in the area I was hiking on the PCT. But I didn’t have Valley Fever.
After seeing an ENT doctor I did have a sinus surgery that cleared my sinuses of some areas of infection he said. But again no decrease in my fatigue.
I have found a very good support group at the “Patient” web site for information like diet and exercise and of course personal support.
Since I was in and out of medicine clinic about every 4 to 6 weeks for antibiotics and steroids I decided to try using Azithromycin 250 mg MWF and that has helped with a considerable decrease in infections. I have had one infection since staring the AZ nine months ago but tested for Pseudomonas in my sputum.

I do have a concern with taking the Azithromycin long term as was pointed out by one of the members on our site, for example.
I would like to ask if going to Mayo Clinic in Rochester might be of big help for me, perhaps doing some other regime of antibiotics to decrease the number of infections as has been pointed out. My Pulmonologist here in New Orleans is not familiar with any uses of long term antibiotics and am seeing an infection disease doctor for the AZ.
Russ

Apr 28, 2017 · Azithromycin 250 or 500 mg Three days a week. in MAC & Bronchiectasis

I’m wondering how many of the people on the site are using AZ prophylacticly to help prevent recurrent infections. I have been on the medication for 6 months and have had noticably decrease in infections.
RussT