← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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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..."

I think my local ID Dr. has not had much experience with MAI. Thank you for your support, tips, and hug. I truly can feel it. Having difficulty navigating the discussion board but hope to get the hang of it shortly. I have been taking the rifampin at bedtime and NOT sleeping even with xanax or ambien. I will change the way I take that for certain and thank you for that and so much more. I take synthroid and seem to be having hyperthyroid symptoms. Who knows! Very nervous, tachycardia. Maybe from pills — don’t know yet. Is one of the antibiotics notorious for causing tachycardia and extreme nervousness? I take a zillion other pills. I tell people I have so many conditions, I am surprised that I do not have a prostate problem (I am a female — need to say that because of name.)! I will take synthroid at nite as separate from the rifampin as possible. Words are inadequate to describe my gratitude.
Returning an even bigger hug, Terry

Hi im sophie. I started the 3 meds in july 2016. At first was sick to my stomach a lot, but now i feel really good. I go see my pulmonogist every three months, get eyes checked every three months, got my hearing tested, and go for blood work and chest x-rays every three months. Its a lot to meep up with, but i have to and you can do it… i was very depressed at first, but with the support of family and friends, i will be fine… and you will too. ..

@128128terry11t, Terry, as you read through the past pages you will find in time that you may end up knowing MORE than MANY doctors you meet up with! If I may .. you might try calling around various Infectious Disease Doctors .. ask: How many MAC patients have you treated in the past 12 months? Try to find one that HAS been treating MAC patients!! When you find one you will be better off! Even if you have to drive a little bit .. within reason of course. Just remember .. you MUST be your own best advocate .. educate yourself .. that is the very best thing you can do for yourself! Sending you a hug! Katherine

@sophie1019, Sophie, thanks for jumping in with your support and tips for Terry. You so well remember how scary it is in the beginning .. we are all in this together .. the same journey! Hugs to you! Katherine

I really appreciate this group and have learned a lot about my MAC. I also have Bronchiectasis. Is there a chat group for people with that?
Hugs from David

@david1952, David, our group is ALSO labeled “Bronchiectasis” .. AND since I have been stable from the MAC since May 2014 .. I really feel I am now primarily dealing with the affects of my Bronchiectasis .. so REALLY wish more of our group with Bronchiectasis would jump in and share symptoms .. tips .. survival techniques .. what their doctors have told them etc! I would LOVE this!

My Dr. Aksamit told me that MAC and Bronchiectasis frequently go hand in hand .. that it is really not know which comes first .. chicken/egg thing. Do we get Bronchiectasis first .. then it becomes a breeding ground for the mycobacterium .. OR do we get MAC and the Bronchiectasis comes second. They just don’t know.

I have been told that my Bronchiectasis is not severe yet so I am very grateful .. BUT it is a real pain in the batooty! I cough a LOT .. especially for some reason in enclosed spaces like cabs/autos/buses .. theatres .. restaurant booths. The result is CONSTANTLY kind people offering me lozenges if I have forgotten to tell them “I have a lung condition .. but it is NOT contagious” .. my usual refrain It really becomes terribly embarrassing because it is constant! I also cough a lot when I lie down to go to sleep at night. But I keep reminding myself of my “gratitudes” .. how it could be SO much worse!

So David, hope others with Bronchiectasis jump in with their thoughts etc. I’d really like that! I’d love more activity about Bronchiectasis. Hugs! Katherie

Hi Terry
Rifampin messed w my sleep. I take it in AM 1 hr before breakfast now. You gevused to it in 3-4 weeks, at least I did. Also, it keeps Synthroid from absorbing so I got very hypo thyroid.

Also, I got irregular heartbeats and was VERY shaky and nervous at first. I think Azithromycin plus just being nervous when you first find out you have MAC all contribute.

Try to give it time, eat healthy, get a little exercise, stay busy with other things……it gets better, promise. I cried the first week on meds. I’m pretty ok now….

KayS

@kaystrand, Good advice Kay .. you all know just how tough it is in the beginning .. but at least Terry found our community of great people .. she definitely no longer has to feel so alone! Hugs to you! Katherine

Katherine, hi. It’s Mary Jo. Just read your note about the bronchiectasis and desire for more information on this forum. As I have told you before, I have that disease and iit was caused by a mycobacterium. It was diagnosed in 2009. It is a progressive disease, no cure, just maintenance. Your constant work is to not get a cold, bronchitis, pneumonia , you get the drift. Each lung infection makes your widened airways worse, especially the severe coughing associated with these illnesses. Each person I know with the disease does different scheduled things- ABX, nebulizers, airway cleaners, vitamins, the Vest. I can only say what I do personally. I started with arithromycin for awhile, bactrim when I had green mucus coughed up or some bleeding when coughing(infection). That worked for quite awhile keeping me from getting really sick. Right now I take doxycycline for 14 days, 2 weeks off, then Keflex for 14 days, then 2 weeks off, then repeat. If I feel infection starting I take levoquin for 10 days. I have tried saline in the nebulizer, but it was not for me. Many others do use the nebulizer daily. I tried a number of inhalers, again, no effect on me. I take NAC daily and try to walk a lot. Every day I lie down, get out my Aerobika, and clear my lungs, usually for about 45 minutes. I use a lot of Kleenex! I do cough a lot, as you said. Very embarrassing! The time to clear is not always predictable for me. I just feel my lungs tightening, and I cough, and it is pretty yucky. I do get more fatigued than I used to, so I try to pay attention to that, and sleep a little more. Hope this is a bit of help if you have been diagnosed with bronchiectasis.

@david1952, David and @maryjo2sell, Maryjo, thanks so much for jumping in! MAN! what a LOT of good advice for @david1952, David! I think I am going to start a new Bronchiectasis note page .. keep track of different tips our Group posts. I have reams of data I collected when I was diagnosed if people have an actual question that I can then refer to .. BUT I think the BEST is the kind of advise/help/every day dealing with the disease that our members like you post and use in real life! Thanks again .. just can’t beat our great group of people! Hugs to you! Katherine

Just sent a blank message — sorry.  Thank you for helping me NOT to cry.  I have felt like crying and just couldn’t … but I felt that the tears were there and needed to come out.  Your email and others have helped me to no longer feel that need.  Thank you just seems so inadequate – that said, thank you.Terry

No need to ever apologize for crying! I am just trying not to let MAC define me. Irene