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

@pamelasc1, Pam, thank you for your lovely thoughts! Quite honestly I have great hope .. even today I feel better! YEAH!

Pam, I have some concerns for you .. here is why. I wish your Pulmonologist had given you more information and follow up check ups. I do NOT want to concern you .. but as you know I am BIG on being your own best advocate .. AND due diligence. I would suggest you read this article that I found AFTER I was diagnosed. Unfortunately .. WE are the ones who must care about the one body we are given in this lifetime .. NOT the doctors! After you have read the article I would suggest you get to a GOOD Infectious disease doctor .. request a sputum culture be made for Pseudomonas Aeruginosa .. explain your history and ask for follow ups.
https://bronchiectasisnewstoday.com/news-posts/2017/01/31/study-identifies-key-variables-survival-bronchiectasis-patients/
Here is what Dr. Aksamit told me:
Dr. Aksamit said that Pseudomonas Aeruginosa can be treated but like MAC cannot be cured. In my case that the Pseudomonas Aeruginosa bacteria had probably been in my lungs long before it showed up on my 11/9/16 regular sputum culture report. But just like MAC shows up on a culture report from "MAC FEW" to "MANY" to "COLONIES" (depends on where in the lungs that particular sputum culture came from!) the Pseudomonas Aeruginosa bacteria is the same. The Pseudomonas Aeruginosa can lay low until it shows up enough in a culture to be considered "PROMINENT".

Only and at that time (considered "PROMINENT") does it need to be treated. He did not say this but it can be assumed: You do not use high power antibiotics UNTIL necessary in this world of super bugs .. especially with people with immune systems like mine who will probably NEED them in the future. Essentially until I got sick .. you don't treat.

My follow up will now be in 3 months I go back for another sputum test to make sure the Pseudomonas Aeruginosa "stabilized", another Xray, a pulmonary test .. the usual. Then we will see what the next step is. I am obviously hoping for the best .. that my Pseudomonas Aeruginosa can be kept stabilized like my MAC has been since May 2014! BUT you can bet that I will continue to do my "due diligence" and will continue with sputum cultures and check ups!

Pam, hope this does not frighten you .. but I wanted to be honest with you ... until I was given the diagnosis and did my own due diligence did I really understand it was nothing to mess around with. Sending you hugs! Katherine

Hi Amy: My name is Terry. At first, I started all 3 at once. After side effects, was taken off all 3 and was re-introduced one at a time at two week intervals (azithromycin for two weeks alone; ethambutol for two weeks along with the azithromycin; rifampin for two weeks along with the other two). No mention of how long it might be for side effects to present. I would assume that it would be either immediate or close to that but am totally unsure. Don't really want to think about that. Hope that my suggestion of an anti-anxiety is helpful. There is such a stigma attached to taking that kind of medication and that is most unfortunate because it could very well be the key or one of the keys to success. Better days will be ahead.

@ilgrp4e, PLEASE!! Have her Infectious Disease doctor STOP the meds until she is stabilized. THEN work with her .. start just ONE antibiotic perhaps for ONE week .. watch WHAT side effect .. THEN a second antibiotic perhaps for ONE week .. watch WHAT side effect .. THEN a third antibiotic perhaps for ONE week .. watch WHAT side effect ! DO NOT start all THREE at once!! No WONDER your poor Mom is so Ill. Keep coming back .. we will help you!! Hugs! Katherine

Wonderful!!! Here's to leading us through the forest into the light!

@ilgrp4e, I wanted to quickly get that one post to you. After you have done what I said .. take a list of all your Mom's meds PLUS the new antibiotics .. go to a local pharmacy. Ask to speak to the PHARMACY MANAGER. Now you have to speak up .. YOU have to be your Mom's BEST ADVOCATE! Don't let them put you off! Explain the whole situation to the Pharmacy Manager. Show the list to the Pharmacy Manager .. ask them to help you put together a "Daily "Medication Schedule" for your Mom. Times/with or without food etc.

That should help alleviate some of her issues. Only a pharmacist can tell you WHICH med can be taken with WHICH med without it affecting each other .. deleting some of it's efficiency etc.

Then as you have time .. read some of the back pages of our Forum to see what others have done to alleviate some of the symptoms .. you will learn a lot! @ilgrp4e, .. your Mom is REALLY lucky to have a daughter like you! Good luck to both of you .. I am sending BOTH of you big hugs an LOTS of positive energy in this tough time! Keep coming back .. we will try to help you in any way we can. Katherine

@beatitnow, Amy, be SURE you do NOT start all the meds at one time!! Allow at least 4-5 day between or preferably a week to see which/what side effect belong to what med? Has your doctor told you this? Also .. did your doctor tell you to start a probiotic in advance? These are the notes I have on starting:

I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!

PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)

Amy, these are just my thoughts .. you are in the driver's seat .. your body .. your life! Hugs! Katherine

I too have all 3...found this online if helpful: http://www.uchospitals.edu/specialties/lung/

@kaystrand, Hello Kay, I am BETTER today .. not to worry! Sorry about your being uncomfortable about the article on Bronchiectasis but truthfully our Forum is MAC and Bronchiectasis .. WHY .. because as Dr. Aksamit told me when I was diagnosed with BOTH at the same time .. the doctors do NOT know which comes first .. chicken/egg thing. Do some people get MAC first and THEN Bronchiectasis? OR do they get Bronchiectasis and THEN get MAC. None of the doctors really know which comes first because there is no money for research to find out.

That is why that article is on our Forum .. because Bronchiectasis is so related to MAC. Because knowledge is power .. when we know better .. we can do better. Knowledge of something can never hurt you .. it can only expand your mind to possibilities to change your universe.

You are indeed blessed if you only have MAC. You are one of the lucky ones! So do NOT worry .. it does not apply to you. Just stay as healthy .. happy and serene as you possibly can .. live your life as well and fully as you can! Keep us posted on your progress .. here's hoping August is a GREAT month for you! Sending you a hug! Katherine

@ilgrp4e, .. do you have a first name? Much more personal! Yes, @ilgrp4e, there is ALWAYS hope! As the old saying goes .. where there is life .. there is ALWAYS hope! And I would say .. where there is a wonderful daughter .. there will ALWAYS be hope! You go Girl! Hugs! Katherine

Sent in separate post a link to University of Chicago...she clearly cannot tolerate the MAC meds when taken all together...others here have spoken of starting one at a time with a few days or a week in between to make sure there's no bad reaction and if there is, to which one...I'm thinking she can also see a Rheumatologist there too and from there have the two docs coordinate her care. What RA meds is she taking?