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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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Replies to "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..."

It appears that I had bronchiectasis first — but they are uncertain.  I tell my classes (graduate school) that I may have to leave the room for a minute or two to cough as I have a non-contagious bacterial lung infection.  They have been remarkably thoughtful (then again I give “grades”) and now I don’t have to feel embarrassed about the possibility of having to cough.  Don’t want to swallow the phlegm.  I also tell them that I am of no danger to them but they are to me.  I ask that if any student feels sick to please try and not get too close.  I am sounding a bit paranoid and phobic but that can’t be helped.  I have found that honesty is truly the best policy. I tend to be more private than what this email suggests.Terry 

I will do just that!  I will call around.  I was just thinking that I might stay with my infectious disease doctor because of her kindness but your email dissuaded me from sticking.  My instinct is to change and your email made that decision more solid in my mind.Terry

Just when I think that I could not be more grateful for all the responses, I am proven wrong when I read your email.  You and all have helped me to fight the depression, fear, and aloneness.  So grateful.  Not sure if I am supposed to respond to all emails but feel the need to do.  Want all to know that their emails and read and cherished by me.  Terry

RE: Bronchiectasis — I subscribe to “Bronchiectasis News Today”. Lots of good info.
Main site: https://bronchiectasisnewstoday.com/

Sample Weekly Digest you can sign up for: http://us5.campaign-archive1.com/?u=52c64784d386bd00ea57ee792&id=33155d084e&e=551e0ae719

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

128128terry11t, Terry, thank you is just fine! You will find that YOU will be there for others as THEY begin their first scary steps .. just as our lovely people have been there for you .. that is what our community is all about! “Playing it forward”! We are ALL on the same MAC journey .. just at different stages .. different steps along the way… BUT the absolute same journey. That is why we all understand why we need to be there for each other .. SO that a new person not feel so alone and afraid. We truly remember what it was like in the beginning .. and don’t want another person to go though any more than necessary .. THROUGH educating themselves .. due diligence .. taking charge .. advocating for themselves.. they TAKE BACK THEIR OWN POWER! Over their fears .. over their lives .. over their disease .. over getting back their positive thinking .. positive healthy living. It is part and parcel of how our community works. You are now one of us! Sending you a hug! Katherine

@irene5, Amen to that Irene! MAC is a PIECE of who we are .. not WHO we are!! Love that you are reminding us of that! Hugs to you! Katherine

@128128terry11t, Terry, because I travel a lot and must explain to a lot of strangers .. I have simplified it even more .. I say”I have a lung condition .. but it is NOT contagious .. no fear of a virus!” I say this in a joking manner about not being contagious but usually people are appreciative! I don’t even mention it is mycobacterium .. sounds too scary.

Great idea about requesting sickies to stay away from you! However at times we don’t have that option. I was just on a trip with a VERY virus sickie! Then on an airplane for 10.5 hours with her! YUCK! Stayed totally away from her as much as I could but on the final day I was sneezing like crazy … nose running like a sieve. SO I jumped on my usual travel remedies. I will tell you what works for me .. may NOT work for anyone else .. but I kept it up for two days .. AND did NOT get that infection .. OR stopped it in it’s tracks!
1. Airborne Vitamin C 1000mg Immune Support Supplement .. several times a day
https://smile.amazon.com/Airborne-Vitamin-Support-Supplement-Effervescent/dp/B000WZI4WY/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1483906644&sr=1-1&keywords=airborne%2Bcold&th=1
2. MORE IMPORTANTLY I THINK .. I have only found it on Amazon.com but I think it works WONDERFULLY! Used it MANY times a day .. don’t even follow directions .. sorry! Halo Oral Antiseptic, Citrus,
https://smile.amazon.com/Halo-HL00101-Oral-Antiseptic-Citrus/dp/B009240FPK/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1483906763&sr=1-2&keywords=halo+oral+antiseptic+spray
Terry, being around the public the way you are .. I don’t know about you .. but with my MAC PLUS Bronchiectasis I just seem to catch ANY cold/flu virus out there .. anywhere in the vicinity of me! So if I hear anyone appearing to have a sick cough around me .. I grab my Halo Spray (carry it in my purse at all times!) and spray away!

Also I assume if you are near age 65 or so .. you are getting the “Super Flu Shot” .. the FLUZONE SHOT .. plus have had the pneumonia shot?

It is REALLY good that you are excusing yourself to cough up the sputum. It ABSOLUTELY can become a breeding ground for mycobacterium. Read the posts on the importance of “daily lung hygiene”.

Terry, this is a nice place to be .. we don’t have to pretend .. just “be” .. privacy be dam..ed .. we’re all in it together! Hug! Katherine

@128128terry11t, Amen to that Terry! That is all a part of our “due diligence” .. advocating for ourselves! Sorry .. but “nice” just doesn’t cut it for me! I want/demand an Infectious Disease doctor who KNOWS my disease and is going to HELP me HELP MYSELF! They can’t do that if I end up knowing more about my disease than THEY do! You go girl! Hugs! Katherine

Hi @128128terry11t, we all know the feeling of depression, fear and aloneness only too well with the MAC diagnosis, you are not alone anymore.

@128128terry11t, Terry you do NOT need to respond to each and every post you receive! We all know how overwhelming all this feels in the beginning .. your PRIMARY responsibility right now is to take care of YOURSELF!! You are working .. trying to get a handle on your MAC disease .. trying to understand all this. We know you are grateful for our help and support!

IF you feel a need to respond .. all you REALLY need to do is just “click on the heart” below “Reply” .. the person will get an email saying you “Liked” their post! That is quick for you after you have read a post .. alerts the poster that you have read their post .. BUT then you can get on to all the other responsibilities of your life. Right now .. just take care of YOU! Hugs! Katherine

The “65 year old” train station is in my rearview mirror. I will be ordering those products. Halo spray will be my new pepper spray for germs instead of people. Thanks, Terry

I want to get in on these conversations. How do I do thi?