(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

@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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Just wondering do you sterilize after each use of the aerobika? Do you always clean in regular warm sudsy water and rinse preferably in distilled or boiled water before you sterilize? So if you use aerobika twice a day you would clean/rinse, sterilize twice a day? I have been negligent in only doing the aerobika and saline once a day … and I am just beginning my journey. The posts and your guidance have set me straight. Now for something else: I went to National Jewish in January and they gave me a MEDfacts sheet on using the aerobika. I noticed that under “recommended disinfecting method- electronic steam sterilizer for baby bottles” — THAT METHOD WAS CROSSED OUT. Didn’t pay much attention to it when I went in January (so overwhelmed with all the info and instruction) but will ask them why it appears that that method is no longer acceptable as I hope to go to National Jewish in July. Will try to get to the bottom of that if I can. By the way, it still listed: boiling, microwave steam bag, and isopropyl alcohol as acceptable methods to disinfect. Never want to miss an opportunity to thank you, Katherine. Your knowledge, comfort, and wisdom have kept many of us sane … or as sane as we can be. Terry

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

Jump to this post

Terry, I was at NJH in May and was told to clean my Aerobika once a day. Use it, disassemble it so that it will dry again, use ii again and then clean it. They said The sterilizing should be done once a week. I use the microwave bags for that. I don’t use saline though so I don’t know if this process applies to your situation. Jan.

REPLY
@katemn

@windwalker, Terri I am answering you on the Main Forum because the info on your salt treatment is REALLY good info to have on our Main Page .. PLUS I am just SOOOO excited for you!! YEAH!! You are SUCH a trooper .. one of my personal heros with your oxygen tank at the gym etc!! You absolutely deserve every single good thing that happens for you!! I am so very proud of you!! You go girl!! I am sending you one BIG hug! Katherine

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update on my recent Mayo visit.
Posted by @windwalker, 5 minutes ago
Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn’t sound like much, but 4% in the other direction (down) starts to put me in the lung transplant category. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistently losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!

I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs – Terri M.

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@katemn thank
you saving my post and sharing it. Good lung hygiene is critical.
 

REPLY
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@heathert
Hi Heather! Not only does the cardio strengthen your heart and lungs, but
conditioned muscles use less oxygen. That helps with being so short of
breath.
 

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

Jump to this post

I have a question about something I have not come across on this forum. Since we all have lung disease in varying degrees of seriousness, I am wondering if anyone has any thoughts about living in a home with a radon mit system installed to keep radon levels “normal.” Thank you in advance.

REPLY
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@jentaylor
Awe, Jen, thank you for your kind words. I am reading this post for the first
time this a.m. Ironically, just last night, my husband commented to me that my
whole attitude has changed since last Nov. That is when I went through the two
pre-qualifying tests for a double lung transplant. For the last 10 yrs I was
positive I would expire by 2017. A dr actually told me that was highly probable,
plus, I felt like I was dying because I couldn't breathe very well, I coughed
constantly to the point of vomitting and pulling muscles. I could not walk 20 ft
without having to sit down and catch my breath. I just accepted that I was not
going to live to see 60. Treatment from the Mayo Clinic has greatly improved my
quality of life. When you feel better, you do better. I am now a fighter. I DO
NOT ACCEPT that I will die too young! Dwelling on illness and death can be a
self- fulfilling prophesy. The mind is powerful. The more I believe I am well,
the better I get. No kidding! I hope today finds you in peace, Jen. I also hope
you are able to continue your walks. Keep your body moving. We have your back
girlfriend!    – Terri M.
 

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

Jump to this post

Want to make sure that I understand. You use your aerobika twice a day (after first use-disassemble and allow to air dry) but only clean/rinse at the end of the day after second use? Did you get the sheet where the electric baby bottle sterilizer had been crossed off as an acceptable method to disinfect the aerobika? Will ask NJ if when using a nebulizer twice a day, it need only be cleaned/rinsed after the second use. Thank you. Terry

REPLY
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

Jump to this post

@windwalker As I have mentioned before I don’t always have time follow this string because it’s not a problem I or anyone I know has, but this tip is great, really for all of us. Another reason to get exercise. My brother had a heart attack about 6 years or more ago and at this point he is operating at something like 16% lung capacity. I know his problems stemmed from lack of exercise, he and I were both negligent about that as we got older, and we both had been fairly active when younger. I am so glad that about 6 or 7 years ago I started getting active and now am very active. At 69 I have outlived both of my parents and I am sure it is because in those days people were just not aware of how important it is to be active. Now they even say it benefits your brain and cognizance.
JK

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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@irene5 Isn’t this something you would only have done if your house had shown positive in a radon test? This was something that was a huge issue for a while in NH here (the Granite State) but I haven’t heard much about it for awhile, maybe because we have not been looking at homes to purchase. We did have our home tested when we bought it.
JK

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

Jump to this post

JK – I live in Arizona where there is very little radon except more rocky areas by the mountains so there isn’t a connection with MAC and radon for me. It’s about soil and water, the way I understand it. Linda M

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

Jump to this post

I just looked at the sheet I got from NJH and the baby bottle sterilizer is not listed so they must have revised the sheet. These are the methods listed: boiling, microwave steam bag, isopropyl alcohol, and hydrogen peroxide. Jan

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

Jump to this post

Yes, thank you. When we lived in the Berlin/Gorham area of New Hampshire  from 71 to 86,  we did not know to check for radon. Ignorance is bliss! Every house we are looking at to buy now in Connecticut as we want to get back to our family, has high radon when we have it checked. Yet people have lived in these same homes for years and never checked. The sellers always tell us they will have it mitigated, but we are fearful of radon because of my MAC/bronchiectasis and my husband's sarcoid.(probably got that living at chimney level in Berlin).  We are losing beaucoup money with each home we have thoroughly inspected and ultimately cancel. We certainly don't want to hasten our demise. Thank you for your response. 

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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Thank you.

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@katemn

@windwalker, Terri I am answering you on the Main Forum because the info on your salt treatment is REALLY good info to have on our Main Page .. PLUS I am just SOOOO excited for you!! YEAH!! You are SUCH a trooper .. one of my personal heros with your oxygen tank at the gym etc!! You absolutely deserve every single good thing that happens for you!! I am so very proud of you!! You go girl!! I am sending you one BIG hug! Katherine

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update on my recent Mayo visit.
Posted by @windwalker, 5 minutes ago
Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn’t sound like much, but 4% in the other direction (down) starts to put me in the lung transplant category. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistently losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!

I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs – Terri M.

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Hi, All —dis the saline a prescription? or something you can get over the counter? Neither my pulm doc nor my ID doc has said anything about it. Thanks – Barb S

REPLY
@katemn

@windwalker, Terri I am answering you on the Main Forum because the info on your salt treatment is REALLY good info to have on our Main Page .. PLUS I am just SOOOO excited for you!! YEAH!! You are SUCH a trooper .. one of my personal heros with your oxygen tank at the gym etc!! You absolutely deserve every single good thing that happens for you!! I am so very proud of you!! You go girl!! I am sending you one BIG hug! Katherine

++++++++++++++++++++++++++++++++++++++++++++

update on my recent Mayo visit.
Posted by @windwalker, 5 minutes ago
Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn’t sound like much, but 4% in the other direction (down) starts to put me in the lung transplant category. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistently losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!

I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs – Terri M.

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Hi, Barb, The saline is a prescription.

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