1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 28, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

@jkiemen,
the are the videos that I watched that night. Katherine posted these and they
are very informative. I hope her post containing the video list came along with
this post. If not, ask her for them.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 28, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

@jkiemen In 2013 I was put on a bi-monthly plan. One month I would take
500 mg of Cipro for ten days. Then the next month I would take 500 mg of
Doxycycline for ten days.  I would take these drugs 2x a day. By
alternating them, it keeps the MAC from becoming resistant to one
particular drug. I had been doing well on those for several years, then tested
positive pseudomonas on August 2016. So now on alernating months of Toby and
Cipro. The Toby specifically kills pseudomonas, not MAC. I am curious about how
your doctor will want to treat you. I found it helpful to type a list of
questions and take the print-out with you. Best of Luck!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 28, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

@jkiemen,
oh well.....I am 58, and I am not an old woman yet. (although some days I feel
like it!)
 

REPLY
Jo Ann K | @jkiemen | Jun 28, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

Did they do a culture of the specific type of MAC?

 

REPLY
Katherine, Alumni Mentor | @katemn | Jun 28, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

@jkiemen, and @windwalker Terri, below is correspondence from my Mayo Clinic doctor who shows on her Bio .. one of her "Interests": "Alpha-1 antitrypsin deficiency". When I told her about my past history she was very interested .. I will keep you posted as I learn more about the full alpha-1 antitrypsin deficiency testing later in July 2017 .. and what she says about it .. just what it means as it relates to my lung issues! Hugs! Katherine

++++++++++++
Katherine, If your testing indicated the Z mutation, we should complete full alpha-1 antitrypsin deficiency testing to determine which genes you have and if the level is low. I have added to blood work to your evaluation in July.

Question: Dr Dulohery, sorry not to get back to you sooner .. just remembered .. my 23andMe "Detected mutation" is: PI*Z ,, the most severe mutation .. increased risk for COPD. I will bring a copy of the form at next appt.

REPLY
Katherine, Alumni Mentor | @katemn | Jun 28, 2017
In reply to @katemn "Dear All, I am finding my Aerobika really works great hooked up to my saline solution..." + (show)
@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

@lindam272, Linda .. this if really great UPDATED information for my File Cabinet .. when I called Aerobika directly they had NOT tested baby bottle sterilizer as a method .. personally I am going to stick with my current choice of sterilizer because it is larger /more space .. but to each their own .. just do your own research! I was REALLY glad to see they are ok with ALL 4 pieces being sterilized .. because I was concerned about what looked kind of like "fragile" rubber pieces. Good information .. thank you!

In terms of frequency of sterilization .. I REALLY think this must be a discussion with each of our doctors BECAUSE the severity /type of infection etc is so individual ie “For HIGH LEVEL DISINFECTION: If clinically necessary for the patient's’ disease state, the device may be cleaned after each use and disinfected once each treatment day.

REPLY
Katherine, Alumni Mentor | @katemn | Jun 28, 2017
In reply to @katemn "Dear All, I am finding my Aerobika really works great hooked up to my saline solution..." + (show)
@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

@128128terry11t Terry thank you SO much for your offer to ask questions for me! Hugs! Katherine
1. I am currently doing 28 day cycles on/off of Tobramycin for PSEUDOMONAS AERUGINOSA, KLEBSIELLA and SERRATIA bacterias 3 cycles .. currently on 2nd Tobramycin cycle.
2. Can I use the hot water (hot water heater in condo assn set to 130 degrees) from this shower head instead of distilled water to rinse my Aerobika and nebulizers prior to sterilizing. My disposable shower head is: Kleenpak™ Disposable Shower Head Filter
https://shop.pall.com/INTERSHOP/web/WFS/PALL-PALLUS-Site/en_US/-/USD/ViewProduct-Start?SKU=gu7ucktu#attr_description For up to 31 Day Use Pall Kleenpak Disposable Shower Head Filters are supplied non-sterile and integrity tested. The double layer 0.2 µm Supor® membrane within the filter cartridge is validated for the removal of bacteria, protozoa, fungi and particles from the water supply by acting as a barrier. The filters can be used to provide water for use in topical applications such as personal hygiene. Part Number Description Pkg
KAQF4 Disposable Shower Head Filter for up to 31 days use 12/pkg
KAQF42 Disposable Shower Head Filter for up to 31 days use 2/pkg
3. Am I able to sterilize just one time a day .. after first use-disassemble and allow to air dry .. but only clean/rinse at the end of the day after second use?

I have NOT forgotten the post from my File Cabinet .. SO important for us to remember since we will NEVER get ride of those nasty critters in our lungs .. merely manage them:
From Member Linda @lindam272 We benefit from sharing information with each other. *PR0BLEM I learned from my Respiratory Therapist: I WAS NOT sterilizing my equipment DAILY! I sterilize the three main pieces of the Aerobika plus my nebulizers!

REPLY
Katherine, Alumni Mentor | @katemn | Jun 28, 2017
In reply to @katemn "Dear All, I am finding my Aerobika really works great hooked up to my saline solution..." + (show)
@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

@128128terry11t Terry, you wrote "I will not be in control of the water temperature! Building was erected in 1987 so pipes etc are old. " I don't have a clue if it may/may not help you .. but when our Forum had all the discussion on hot water heater temperatures .. I sent the below email to our condo building manager as a FYI. I think it DID have some affect .. after all they do not want lawsuits. Now I think there is current questioning on JUST what the temperature should be .. but at that time it was 130. Hope it MIGHT help?? Hugs! Katherine
++++++++++++++

Could you tell me what our current water heater temperature is set at? I have been advised to check this.
Thank you! Katherine

Raise hot water heater temperatures. Turn up your water heater to 130° F (55° C). NTM patient household plumbing that did not have NTM had higher hot water temperatures (130° F or 55° C or higher), compared to households whose hot water heater temperature was 125° F (50° C) or lower.

Recent studies (09/01/15) have shown that raising hot water heater temperatures in 10 homes that had M. avium resulted in disappearance of M. avium from 9 of the 10 homes by 6 weeks.

ALSO
In my continuing research on trying to figure out my crazy disease I saw the following .. I was REALLY delighted that our Association made the choice to use at least 130 degrees on our hot water heater. Saw the below .. thought you'd be interested. Also lessen problems with Legionnaire's Disease!

NTM were less frequently recovered from household samples whose water heater temperature was >130°C (>55°C). High water heater temperatures have been associated with low numbers of Legionella spp. in household and other building plumbing (36–39).

REPLY
terryb1 | @128128terry11t | Jun 28, 2017
In reply to @katemn "Dear All, I am finding my Aerobika really works great hooked up to my saline solution..." + (show)
@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

Love it! Thank you. Terry

REPLY
terryb1 | @128128terry11t | Jun 28, 2017
In reply to @katemn "Dear All, I am finding my Aerobika really works great hooked up to my saline solution..." + (show)
@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

Printed it and will take with me to NJ. This is important for us all. Terry

REPLY
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