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

@cindyrnc Cindy, personally I CANNOT take a ZPak (Zithromax 500) .. took once and triggered my migraines horribly .. so never again .. I think everyone's side effect might be different .. just tell your doctor. I would NEVER take it again! Hugs! Katherine

That's the one Katemn. I just re-ordered from Costco (warehouse store) and they didn't have that one come up with larger quantities so I just got the Digestive Advantage with Intensive Bowel Support. I've taken for about a week and I'm not sure I've noticed any difference. I think they are all fine as long as they are the Digestive Advantage brand. Linda M

@cindyrnc, Cindy, can't remember if I have given you the below resources on Bronchiectasis already .. if I have ignore .. if not .. do some reading .. Knowledge is Power! You say "My bronchiectasis isn't that bad yet." KEEP IT THAT WAY.. by keeping your lungs CLEAR!! Yes it takes time and effort .. BUT it will take even MORE time and effort if your "thick mucous plugs" become BREEDING GROUNDS for mycobacterium MAC or other bacteria!! Hope the below might help you! Hugs! Katherine

From my File Cabinet:
1. SALINE NEBULIZED TREATMENTS-IMPORTANCE OF WITH BRONCHIECTASIS AND MAC Member @windwalker Terri: Told my Dr that the saline treatment wasn't bringing anything up. It is because my lungs are crystal clear at the moment. He said it is STILL important to continue the saline inhalation anyway. WHY? Because it acts as a preventative, it thins the mucous. When the mucous is thin, there is less thick, sticky stuff for the MAC and other bugs to breed in. From @windwalker Terri .. First, I use my Inhaler, (to OPEN my lungs, then I use the saline to cleanse out the lungs. The saline moistens your lungs to help thin out the mucous, making it easier to cough up. Plus, it irritates the lungs a little to make you cough, it also makes for a salty environment which germs do not like to set up house in.

2. NEBULIZING SALINE SOLUTION
PARI COMPRESSOR SUPPLIES FOR NEBULIZING SALINE
a. PARIO VIOS LC PLUS ADULT AIROSOL NEBULIZER COMPRESSOR .. found a good price at:
https://www.exmed.net/p-3907-pari-vios-aerosol-delivery-system-compressor.aspx?defaultvariantid=28616&gclid=comzx6_cwtqcfyidaqodxgqlkg

b. PARI LC PLUS RESUABLE NEBULIZER $69.75 http://justnebulizers.com/pari-lc-reusable-nebulizer-set-buy-5-and-save.html

3. GETTING RID OF THE THICK MUCOUS PLUGS
https://www.trudellmed.com/products/aerobika https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika

Members @decosmo and @maryjo2sell who have given great info about the Aerobika in the past.*Aerobika. I highly recommend it. I love mine. I have two. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. (I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water. 2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap. ) I have had mine for at least 2 years.

@katemn .. 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

4. AEROBIKA-MY PERSONAL ROUTINE-INHALERS/LUNG CLEARANCE HYGIENE/AEROBIKA Below is my particular routine in using my Aerobika
1. use my 2 inhalers PRIOR to brushing my teeth
2. use a "huff" cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. I have found using the Aerobika you are able to " pull" mucous out of those lower lung airways in a way you cannot without the device. Personally I do this twice a day.
3. Inhale 7% Sodium Solution using my Pari Compressor and nebulizer
4. after my Saline Inhalation I again use my Aerobika. I use a "huff" cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can.
5. using peroxide to dampen my toothbrush and toothpaste to brush (purchased a squirt dispenser for the peroxide)
6. rinse my toothbrush .. then using peroxide for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

5. @katemn NOTE: because I purchased a large supply of nebs I use the same cleaning method as below for the Aerobika and nebulizers per my File Cabinet.
I can ONLY speak for myself .. I follow the cleaning method on the Aerobika website: https://www.monaghanmed.com/patients-education .. the same one that came with the Aerobika.
1. I use very warm water .. I use a 4 cup plastic measuring cup to wash the various parts .. I like the cup handle as I agitate the parts I am cleaning! Norpro 4-Cup Plastic Measuring Cup https://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1493589199&sr=8-1&keywords=4+CUP+measure+plastic
I USE THE: The First Years Power of Steam Electric Steam Sterilizer (I remove ONE shelve & make the bottom shelf TALLER to accommodate the tall nebulizer with two other more narrow shelves) https://smile.amazon.com/gp/product/B002WN2B6O/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water.
2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap.
3. I then toss them into the large round center baby sterilizer with the drainage holes at the bottom for storage (that I have removed from the unit) until I am ready to sterilize them all at one time. (This may sound dumb but I store all this equipment in my unused bathtub since I only use my shower!)
4. When I sterilize .. I make SURE I place the AEROBICA on THE TOP SHELF!! After I do sterilize them .. I let the sterilizer cool down. Re assemble and I am good to go! I use distilled water .. I feel it is a good cautionary detail to keep the unit in good condition. If you are unsure you could confirm by calling 800) 833-9653 .. or better yet .. ask your Pulmonologist or respiratory therapist .
I called Monaghan Medical (800) 833-9653 Aerobika Customer Service directly and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC or Bronchiectasis. https://www.monaghanmed.com/patients-education. They finally admitted their ONLY cleaning research was based on boiling SO cannot comment on any cleaning method other than boiling .. baby bottle sterilizing? LIABILITY!! (BUT see 6/17 post from Member @lindam272, the new instructions from Aerobika NOW approve baby bottle sterilizing!)
IF you are using inhaled saline (Sodium Chloride Inhalation Solution) with your Aerobika .. I found a good price at: http://justnebulizers.com/catalogsearch/result/?q=p22f81cn .. I purchased the 5 package. I use the same cleaning method.
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! * my Respiratory Therapist suggested using a baby bottle sterilizer for DAILY USE FOR BOTH MY Aerobika and Nebulizers

SUBSCRIBE: https://bronchiectasisnewstoday.com/2017/01/05/antigen-presenting-cells-may-contribute-inflammation/

You can easily get past issues of the Weekly Digest: http://us5.campaign-archive2.com/home/?u=52c64784d386bd00ea57ee792&id=d9df0e1c03

@boomerexpert, you said "@katemn how does knowing this help?" .. what was this in reference to? Your post did not say. Katherine

@lindam272, thanks Linda, I've added it to my File Cabinet .. every person needs to research and try different probiotics .. what works for one might not work for another .. I'm glad to provide options .. which reminds people "one size does NOT fit all!" Hugs! Katherine

@cindyrnc, Cindy and @irene5, Irene, below is some info that may clarify? Hope you find it helpful! Hugs! Katherine
Zithromax, Rifampin, and Ethambicol.

FROM MY FILE CABINET ANTIBIOTIC ..STANDARD TREATMENT Standard treatment of MAC recommended by the American Thoracic Society (ATS) is a combination of 3 or 4 drugs approved by the Food and Drug Administration (FDA). The drugs include:
Clarithromycin (Biaxin) or Azithromycin (Zithromax)
Rifampin (Rifadin) or Rifabutin (Mycobutin) + Ethambutol (Myambutol)
Streptomycin (Strep) or Amikacin (Amikin)

The first three drugs are pills/capsules and may be given daily or three times weekly (Monday-Wednesday-Friday). While taking these medicines, routine laboratory tests to check kidneys and liver along with a complete blood count (CBC) should be performed, at least routinely for the first six months

Patients who fail therapy after taking the 3 standard medicines (clarithromycin/azithromycin, rifampin/rifabutin, and ethambutol) are usually required to take additional medicines. (such as injectables or “shots”) which may be effective. For extensive or severe disease, or disease that has failed therapy, the injectables or inhaled streptomycin or amikacin are often added for the first 2 to 4 months of therapy.

@ling123, Ling Hope you don't mind if I jump in here .. you asked the question of @lindam272 Linda, BUT I would STRONGLY urge you to TAKE THE REINS of your health issues! YOU MUST be your own best advocate .. KNOW that YOU are the employer .. HE is the EMPLOYEE! IF you are NOT getting the health care that YOU feel you need .. it is YOUR body that is going to get MAC! Why?? Because you said " constant production of thick mucus" THAT MUCUS is an absolute breeding ground for MAC and OTHER bacteria .. like the THREE bacteria that I am battling RIGHT NOW!! Do NOT let that doctor push you around .. YOU are the one who is going to suffer the consequences if you get MAC!!

This is what you SHOULD demand AND if this doctor will not supply it .. get another doctor who WILL listen to you! You can tell him MY Mayo Clinic doctor for EACH check up did the following .. AND you want the same: sputum culture/Xray/Pulmonary Testing .. each of these evaluated my progress.
a. The sputum culture to make sure NO mycobacterium OR bacteria was colonizing
b. Xray to compare with the previous to evaluate any changes
c. Pulmonary Testing to evaluate any changes in pulmonary
Ling, I am ONLY speaking from what I would do in your shoes .. YOU must make your own decisions. Also has anyone spoken to you about daily Saline Inhalation and Aerobika use to help with the mucus? Frankly NO doctor ever did for me .. I learned about it on our blessed Forum! At your appointment .. bring it up! Bet they hardly know anything about it! Hugs! Katherine

what is Mac/Mai above disease?

@katemn Hi Katherine, thanks for the advice. So far I've no issues with my doctor. Like I said, he orders a chest X-Ray before each of my appointment with him to compare with my previous X-Ray results. He will order other tests and consider further treatments if/when he finds that my condition has worsened. Since I have been feeling well and have not had problems other than mucus (which I've had for the past 20+ years), I do agree with him that there is no need for anything beyond what I'm getting until further treatment or more tests are called for. But I will prepare some questions for him based on what I have read on the forum next time I see him in September.

@virtuous69, do you have a first name .. moe personal! Man do I relate to you!! I am the "unpaid medical secretary" to an equally stubborn husband .. in the hospital 3x in 3 months so far this year .. yet told me that he is going on our 2016 planned international trip with the statement "If I am ok the day before .. I going .. with you or alone." He knows darn well I won't let him travel alone in 2017! So when I read your post .. oh did I relate! SO .. down to business:

Bronchiectasis resources from my File Cabinet:
BRONCHIETASIS-SYMPTOMS OF
Symptoms of bronchiectasis http://www.nhs.uk/Conditions/Bronchiectasis/Pages/Symptoms.aspx The most common symptom of bronchiectasis is a persistent cough that brings up a large amount of phlegm on a daily basis. The phlegm can be clear, pale yellow or yellow-greenish in colour. Other people may only occasionally cough up small amounts of phlegm, or none at all. Other symptoms may include: shortness of breath wheezing coughing up blood or blood-stained phlegm chest pain joint pain clubbing of the fingertips – the tissue beneath the nail thickens and the fingertips become rounded and bulbous Signs of a lung infection If you develop a lung infection, your symptoms usually get worse within a few days. This is known as an infective exacerbation and it can cause: coughing up even more phlegm, which may be more green than usual or smell unpleasant worsening shortness of breath You may also: feel very tired cough up blood, if you haven't already done so experience a sharp chest pain that's made worse when breathing (pleurisy) feel generally unwell When to seek medical advice If you haven't previously been diagnosed with bronchiectasis and you develop a persistent cough, visit your GP for advice. While persistent coughing may not necessarily be the result of bronchiectasis, it requires further investigation. If you've been previously diagnosed with bronchiectasis and you begin to experience symptoms that suggest you have a lung infection, contact your GP. You'll usually need treatment with antibiotics. Some people with bronchiectasis are given a stock of antibiotics as a precaution, in case they suddenly develop a lung infection. When to seek immediate medical advice Note Some people with bronchiectasis develop a severe lung infection that may need to be treated in hospital. Signs and symptoms of serious lung infection include: a bluish tinge to the skin and lips (cyanosis) confusion a high temperature of (100.4F) or above rapid breathing (more than 25 breaths a minute) severe chest pain that makes it too painful to cough and clear your lungs If you experience any of the above, phone the healthcare professional in charge of your care immediately. This may be your GP, a doctor who specializes in lung conditions (pulmonologist) or a specialist nurse.

BRONCHIETASIS-BREATHING VIDEO WONDERFUL INFO FROM M.D. Dr. William Girard of University of Texas Health
https://www.youtube.com/watch?v=bOFfckWv7Js
AND GOOD RESOURCES
https://www.chss.org.uk/documents/2013/08/c4_bronchiectasis-pdf.pdf http://bronchiectasis.com.au/bronchiectasis

MAC /MAI.. MYCOBACTERIUM MAC-TREAT OR NOT TO TREAT I felt like my Mayo Clinic doctor put the 'puzzle' of to treat or NOT to treat with antibiotics JUST like a great big puzzle. The puzzle pieces were put together based on the results of the sputum culture results/Bronchoscopy if needed/CT scans/Xray/Pulmonary Testing. THEN deciding whether to treat with antibiotics NOW .. go to quarterly checkups, semi annual .. then to annual .. sometimes then back to semi annual checkups. It is ALL up to your GOOD Infectious Disease doctor who is (IF) KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up checkups to CONFIRM that the MAC in your lungs is STILL "stable"/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still "stable"! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene!

I am going to be very frank with you .. if I was sitting in your shoes .. I would NOT google/research MAC/MAI .. it will scare the bejeezus out of you .. MUCH better to read the past pages of this Connect Forum to educate yourself .. THEN come back with any questions you may have .. we are here to support you every step of the way! Sending you a hug in this tough time! Katherine