(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@boomerexpert

Hey all…check this out…https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 – far more research taking place in Europe than here…will also post in “we must advocate for ourselves” thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here…

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@katemn , I found such great information at Bronchiectasis News Today. I printed a lot of articles about our disease to give to family and friends. I saw an article at the bottom about a doctors view of chronic illness , its a must read for everyone she has a link to her blog about all chronic diseases. Thanks for advocating for us and for doing all you do.
Becky

REPLY
@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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Yes, they did a CAT scan. It showed TBM which dr said is caused by chronic inflammation. That is why he ordered the Smart Vest as now it breaks up the congestion more and I can more easily cough it up. Before every time I coughed my trachea was closing which it still is but now the mucus is smaller and does come up. No, I don’t cough less in Tx. I coughed every where all day and night!!!! I was on antibiotics and steroids 19 times from Dec 2015 to Dec 2016. When I would be on the meds I could function but within a wk off the meds and I would be completely down and out I would be so congested. Dr. gave me a sleep apnea test but it showed I do not have sleep apnea. . I had silent acid reflux for yrs and yrs and didn’t know it so was on steroids and antibiotics off and on for at least 15 yrs. So many steroids that my veins are shot. Have to use a picc line when I’m in the hospital. I was aspirating every time I ate but didn’t realize it and neither did the dr’s. Because my lungs were always infected drs always thought I had asthma/COPD and that is what they were treating me for. Finally a dr ordered a barium swallow, during the test the dr said “you need surgery and you need surgery right now”. He said the moment the food hit my stomach it was coming back up into my throat. That’s why I got the chronic inflammation in my trachea. During the testings that had to be done before a Nissen Fundiplication surgery could be done to correct the acid reflux, it was also discovered I had a mass on my kidney. Kidney dr would not touch me before my stomach was fixed as he said I would have aspirated on the table. Nissen Fundiplication surgery was done in July 2015 and kidney removal was done in Nov. In March 2016 I also had my gall bladder out. So my immune system was very low at this time as I had 3 major surgeries in 7 mo’s. When the coughing started up again I thought the Nissen Fundiplication hadn’t worked so went back to surgeon who ran a series of tests and said there was no way the coughing was caused by acid reflux. My stomach was fixed and I would never even be able to throw up again. He sent me to heart dr who did another series of tests and said yes, you are 73 yrs old and have some heart problems but nothing serious enough to cause the amount of coughing you are doing so sent me back to pulmonologist who sent me to infectious dr who did a series of infusions every 8 hrs for 2 wks and when that didn’t work he sent me to Dr. Adam Anderson at Washington University in St. Louis, Mo. who finally did the proper sputum cultures and discovered I have MAI. I had so many things wrong with me that the drs could not pen point exactly what was wrong. Each problem had to be weeded out, corrected and then onto the next problem. With the MAI meds and the Smart Vest I am now breathing better than I have in 10 yrs. I call it a “miracle” because I can breathe in deeply and blow out and not cough. BUT as all of you know, the side effects of the meds are not all that pleasant. I have hot flashes that sometimes are almost unbearable, I have nausea the 3 days a wk I take the meds, my muscles and joints ache all the time and I am extremely tired and sometimes have to take 2 naps a day to keep going BUT I am breathing!!!!!! I can walk 2 miles at a time, I can dance and I feel better than I have in yrs in spite of all the aches and pains. Now I can only hope and pray that when I start the testing on my kidneys and liver that God will be good to me and let the meds work and not hurt my body any more than it is already hurting.

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@boomerexpert

Hey all…check this out…https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 – far more research taking place in Europe than here…will also post in “we must advocate for ourselves” thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here…

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Hi, I must have missed this, do you have the link please, I would like to read through it. I have my appt tomorrow AM. Thanks! He has 33 years of experience
with infectious lung disease they say so I have some hopes for this being a real doctor
J I will advise if he proves worthy of recommendation. I appreciate everyone being here for me,
it is nice to not feel alone in this.
 

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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@becky33, Thank you for dr Anderson’s information and for sharing your story. Wow I’m trying to process all of this. Life is so hard sometimes. But Im so glad that you believe and have hope in your recovery.
I take my big 3 meds all at once at 7 pm(a lower dose but everyday) to avoid some of the side effects. I too have a vest by hill rom. I use twice a day with a nebulized levalbuterol. I take mucinex 1200 mg every 12hours, spiriva respimat and proair respiclick twice a day all to break up the mucus. I have to use a brita filter water , then in a pot and boil for 10 minutes , then use 2 coffee filters to strain into a jug in the frige for drinking water.I use distilled water in a nasal saline wash twice a day . I sleep with 2 pillows on my left side to prevent silent aspiration. I had the barium and upper gi series last fall with scant amount of aspiration. Was sent to my ear nose and throat doctor, who did my balloon sinuplasty in 2015 , he said not to worry unless i felt I was aspirating and coughing alot while eating. Your coughing is a good thing because you are getting the mucus out but sometimes when it prohibits sleep i keep sore throat spray on my nightstand and just a few squirts helps me get to sleep or through a test that I have to be still for. I just finished a round of ciprofloxacin for a pseudomonus aureus and dont think it helped much.
Have your vitamin levels checked and thyroid hormones and female hormones too. I had such bad hot flashes and chills. I thought i had the flu 24 hous a day for years trying the bioidentical hormones. I finally went on hormone replacement therapy and immediately felt better. One less problem is always better. But, as you know, we can always hope for better. Thanks again for sharing and keep on dancing!!!
Becky

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@beatitnow

Thank you to everyone for the advice earlier on my “fluttering” in my lower abdomen. It has pretty much stopped for the last part of the day, so hopefully it will stay that way. 🙂

We are a military family and we currently live in Montana, but we are moving to Illinois in June. We hope to be there for the rest of our lives because my husband will retire most likely in 2 years. (And, my pulmonary doctor is in St. Louis which is 25 minutes away.) Yay!!

We are leaving tomorrow to fly to St. Louis to go house hunting. WE ARE MOST LIKELY GOING TO BUILD A HOUSE, SO……

1) DOES ANYONE HAVE ANY RECOMMENDATIONS ON ITEMS THEY WOULD BUY TO INSTALL IN A NEW HOUSE THAT WOULD HELP PREVENT MAC/MAI AS MUCH AS POSSIBLE?….Like a special water treatment system, bath shower heads, etc. What have you all done to increase prevention at your houses?

2) WHEN YOU ALL FLY, DO YOU WEAR A SURGICAL MASK TO PREVENT YOURSELF FROM CATCHING GERMS? I really don’t “want” to, but I am curious what most of you do.

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We installed an air cleaning system to filter out any extra dust or pollen, it really helped my Mom, as the air conditioning made her uncomfortable sometimes, she liked it warmer than before,but it did help clean the air. We also had all the air vents etc. thoroughly cleaned as well as fireplaces. We installed outside doors over all doors so that we could close the door to the house before opening the outside, sort of lots of foyers. We also had a self supporting energy system, I don’t remember what they are called, so that if the electric went out it would not effect the air cleaning system or the oxygen she eventually needed, or the heating or air to make her uncomfortable. We also closed off the laundry rooms so that lint dust etc. did not enter the house. The doctor recommended these things. If you fly wearing a mask you will need a doctor’s note, that you are not contagious but are preventing breathing in germs from others potentially or they can refuse to let you board. Not a good thing. Also we used all natural products for cleaning as a lot of commercial cleaning agents are toxic when breathed even in small amounts by someone with lung issues, they can cause coughing and inflammation etc… We already had water filtration just the type on the faucet that everyone has, but she always bathed never showered, so that might be a good idea, we have had patients with aspirated aspergillus which grows in showers. Hope you find a wonderful new home. And good luck and Happy Easter!

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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Fflowhplar…am curious what made you switch from NJH to Mayo? Terrid

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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NJH did not give a feeling of self confidence.
I had a episode whilst blood drawing and they had no emrgency room facility.

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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Becky33 you are AMAZING!!! All that you have gone thru and still remain resilient and pursuing the “right road” medically.
What Is TBM?
Some things you mention that have occurred to you ring bells with my symptoms…so I really appreciate your sharing. Thank you ! TettiD

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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Is TBM TUBERCULOSIS MYCOBACTERIUM?

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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Check with your dr about long term mucinex that often. My regular dr said it can cause kidney stones and took me off of it as I was taking so much so often. I was on hormone therapy before my kidney was removed but took me off and will not put me back on because of the cancer scare. It’s my understanding that the meds I take now cause the unbearable hot flashes??? Thank God, I’m not a depressed person. I have some down days but usually in a good mood just so happy that FINALLY I know what’s wrong with me and looking for at least a stable time in my life in not a cure.

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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Everyone should watch the videos on national jewish heath website on 2016 NTM VIDEO’S and the 2015 NTM VIDEO’S. If you’ve watched already , watch again you may miss information the first time. Its like a full day seminar for free and you can stop and start at your lesire and take notes. Please watch by yourself or with family. On your computer or smartphone.
Becky

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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TBM is TracheoBronchoMalcia . When I exhale the area between my trachea and bronchial tubes closes instead of opens as it’s supposed to. Caused by chronic inflammation from the silent acid reflux for yrs and yrs.

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@katemn

Good MAC Doctor?
Posted by @chinasmom in MAC & Bronchiectasis, 2 hours ago
I have been searching for either an infectious disease doctor or a pulmonary doctor in the St .Louis Missouri area to treat MAC. It’s exhausting work. I currently have pulmonary doctor with a prescription pad and an infectious disease student.
Please help if you know of a good one.
Becky

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@chinasmom Becky, I am going to move your Post to the Main MAC page .. hoping you might get more answers there. Yikes it must be SO frustrating to have that kind of experience with your doctor! “an infectious disease student” .. is that at a teaching hospital? .. and no luck just googling doctors in the area? Hope someone jumps in with some help! Hugs! Katherine

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I live in Godfrey, Il which is about 40 min north of the Arch in downtown St. Louis. We live right on the Mississippi River close to Alton, Il. Where do you live??

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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Hi @chinasmom Beckey, I went to the National Jewish Health website, but couldn’t find the page where these videos are located. Could you provide a link to it? Thanks.

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@boomerexpert

Hey all…check this out…https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 – far more research taking place in Europe than here…will also post in “we must advocate for ourselves” thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here…

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W! Hope you use all the great information you find to educate your docs…who don’t stay up to date like they would have us believe…

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