(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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!

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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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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I see that many of you started the antibiotics one at a time. I, unfortunately, was put on all 3 at once by my local ID doctor. I am due to fly to Denver for appointment of 1/16 with Dr. Drummond. I originally was scheduled with Dr. Daley and spoke with his nurse who told me I could go on meds before coming to Denver. Hope that that won’t foul up what they need to do.
I am experiencing great difficulty with insomnia and somewhat high blood pressure and tachycardia. Nobody else seems to report those kinds of symptoms. First diagnosed in 2007 with MAI and bronchiectasis (went to ER because of hemoptysis — love these fancy terms — sounds better than coughing up blood )and have been followed since then. Seems that my turn has come for the “treatment”. I am on so many other meds; thus, concerned that there may be some interaction going on. Awaiting results of thyroid test on Monday. Would love that to be the case but I have been told by my primary that it makes no sense and I haven’t been on treatment long enough. I insisted that it be checked anyone. We must be our own advocates. I will call Denver on Monday and tell them what’s going on and ask for advice as to how to proceed before I see them. I have a feeling that I will meet many wonderful people on this site. Words are inadequate for me to express my gratitude. You can even google my name so that you know that I exist as a real person. I am from New York so we are all paranoid! Bless you and your kindness. I look forward to getting to know so many of you more.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Cant seem to edit my reply and am terrible at computer skills. Forgot to mention my name since I invited you to google me.
It is Terry.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Terry – My doc said to wait a week before starting each new med. It is not only kinder to our bodies, but allows us to identify which med is causing any side effects we may be experiencing. I began the Azithromycin around mid-Dec., asked if I could wait to until the day after Christmas to start the Ethambutol since I was feeling okay and didn’t want to mess up Christmas plans, so began that 12/26 and today just took my first Rifampin. I waited until I got back in town so was a few days past 1 week as I didn’t want to start while out of town. This has worked well for me so far. Linda

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@lindam272

Marie – I just joined this forum also and live in Arizona so can’t help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I “favorited” the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

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When I first started treatment my doc said I could take all at once if I wanted to. I experimented taking at different times. Part at different times. Then all at night and finally the first thing the morning. That worked the best for me. I was just glad to get all down and over with. Could not tell difference in the way I felt.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Hi @128128terry11t,

Thank you for all the information you have shared, and we are so glad that you have chosen to be an active, participating member of the Connect community.
Please note that I removed your personal email and address from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option.
Thank you for understanding, and we look forward to getting to know you more.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Words are inadequate to describe my gratitude. I hope that this doesn’t sound trite. I am reading the posts, getting loads of tips, and most importantly being inspired to be positive and to see the light at the end of the tunnel (hopefully not a train-must have humor or it would be all over) with all the side effects that I am experiencing as I begin the treatment. I started all 3 antibiotics at once as prescribed by local ID. So many started one at a time — great idea but too late for me. Hopefully, someone else will benefit from sound advice. So excited to be going to Denver. Right now I am medicating the nervousness and tachycardia away. Insomnia seems exempt from any of my drug interventions. I am on a zillion meds so will have to figure out a way to take the rifampin in the am instead of bedtime. Sounds like a great tip.
This discussion board is going to be a life-saver for me. Thank you for helping the intense apprehension and fear attached so commonly to beginning the “treatment”.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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I wanted to post privately but could not manage to figure out how to do so.  Thank you for the removal. Will get someone to show me how to privately post.  I have this crazy user name because website refused to accept some simpler version.  Thank you for getting back to me.  I am certain that we will be in touch.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Great idea for me as I am having some unpleasant side-effects and don’t know which med is causing it. May have to reverse the procedure but will wait to be advised by Denver. thank you. We’re starting this journey together and I look forward to the support that I and others I am sure, so desperately need. Thank you.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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It was 2 o’clock in the morning in 2007 and I started to cough up blood. Frightening, to say the least. Went to the ER where the ER doc said that I had pneumonia. I said, “I don’t have pneumonia and I would like a consult with a pulmonologist.” He replied “that seems like a good idea”. Scary. Anyway waited and waited — finally the pulmonologist came and said that a bronchoscopy should tell the tale as he wanted to rule out MAI. Luckily I had it the next day and waited for the results. My primary at the time told me “You don’t have MAI; I have never had a patient that had MAI”. Been followed ever since. Have bronchiecstasis also so my turn has come to start the meds. Started all 3 at once this past week. Bad idea. Now I don’t know what is causing what … but I will eventually. Will be heading off to Denver. My ID doc here is pleasant but not informed fully about MAI. I live in the NY City area but Denver is still the place to go. They have a satellite division at MT. Sinai in NY but no where good as Denver. Wishing you the best of everything and as smooth sailing as possible. I am sure that we will continue to speak and thank you thank you thank you.
Terry

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Thank you times infinity. Best of luck and as smooth sailing as possible to us all.
Terry

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Thank you so very much, Rosemarya.I look forward to connecting with you in the future,Terry

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Hi @128128terry11t,

Here’s how to send private message.
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

Hope this helps.

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@lindam272

Marie – I just joined this forum also and live in Arizona so can’t help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I “favorited” the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

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Hi @david1952, ginger and licorise tea was great for me and ginger lollies, worked really well for me also.Good luck.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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@kanaazpereira, and @128128terry11t Terry ..
Just wanted to jump in .. personally I feel that private messaging deprives each and every member of the sharing and caring that is involved. That unless a message is TRULY private .. it robs our Mayo Connect of the very purpose it was designed for .. sharing of information .. good and bad .. fearful or delighted. We are all here on a shared journey .. unless we really DO share our cares and woes .. PLUS our victories and joys as they happen .. PLUS the tips and help as we discover them ..we deprive each other.

This is just my personal thoughts. Hope I am not stepping on any toes. Hugs to all. Katherine

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Thank you for the wonderful guidance for a new member! Katherine

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