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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

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

Posted by @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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

REPLY

@pfists

@flib
Was it your pulmonologist that was all for the nebulized silver? Did he/she have any recommendations for the kind or dosage? I plan on running it by my pulmonologist next week just to see if he has heard of it.
Have you considered doing antibiotics the way Terri is rotating one every month.
But not using the Zithromyacin.
Just hearing how tired you are thought maybe worth a try.
Shari

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@pfist Hi Shari! How are you doing these days? Just curious, did you ever ask your doctor about Coloidal silver? I know @kristiemlove would also be interested in hearing about this.

@windwalker

@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you were also on the immunoglobin therapy. I never took the 'Big 3', my Mayo dr put me on monthly antibiotics. For 10 days one month, I'd take ciprofloxacin, then on alternating months, I'd take doxycycline for ten days. A yr later I tested negative for mac, but stayed on those two meds for two more yrs to keep the mac away. That was in 2013. I test negative to this day.(I was severely ill) Perhaps you can tell my story to your doctor and be sure to tell him\her that this treatment plan came from a Mayo pulmonologist. I want you to mention that because Mayo physicians are highly respected. They are the cream of the crop in medicine. Without knowing your susceptibility test results to treat mac, my exact two antibiotics may not work for you, but perhaps another pair would. The meds are given alternately to prevent resistance.. One more thing, your dr can call your insurance company and/or Medicare and tell them that they need to make an exception for you to go to Mayo due to you having a rare disease. Sometimes, they can get that through. @alleycatkate was able to flip hers and got into the Mayo. Please keep me posted on what they decide for you

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@windwalker yesterday I coughed up blood. I went back to my infectious disease doctor who was unhappy with me because my pulmonologist referred me to UCLA for consultation. So I had to beg them not to stop treating me. We agreed to start on azithromycin for 3 days a week. It has been a month since I was referred to UCLA and I haven't heard from them yet. My ID doctor finally agreedwith my pulmonologist that a biopsy at UCLA would be a good idea because the MAC has been growing fast and a sensitivity was never done. I just wish my doctor"s could communicate and not get their feelings hurt. It is so hard on me. My ID doctor also put in a request to my insurance for Arikayce inhalation. They faxed the request to my pharmacy; they gave it back to me very confused with it. I am confused too.. I am very tired and wish all I had to worry about was getting the right treatment and getting well.

@windwalker

@pfist Hi Shari! How are you doing these days? Just curious, did you ever ask your doctor about Coloidal silver? I know @kristiemlove would also be interested in hearing about this.

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@windwalker888
Hi Terri
I still quietly follow along on the board.
As a matter of fact I saw my doctor today.
We discussed doing the rotation antibiotics like you do and he agreed. He wanted to do that many years ago but now I am in agreement that it would be the best coarse of action.
No mycobacteria has shows up in a year and a half now.
However I just got over a bad case of pseudomonas.
I got so congested that he did another broncoscope with the wash. He said every branch was all clogged up . It took him twice as long as he usually takes for a scope.
I still use the coliadal silver but only like a teaspoon or two a day.
I started taking the clear lungs and I must say that that does help once I upped my dosage. Saw on the bottle you can take a couple every four hours at first and when I upped my dosage it really worked. It says once you feel relief to go to down a maintenance.
I also am using the herbs which I feel have kept the mycobacteria away. Now we will be treating the bronchectsis with the rotating antibiotics.
I am so glad that it sounds like your doing well.
Thanks for all you do for this board in education us.
Shari

@pfists

@windwalker888
Hi Terri
I still quietly follow along on the board.
As a matter of fact I saw my doctor today.
We discussed doing the rotation antibiotics like you do and he agreed. He wanted to do that many years ago but now I am in agreement that it would be the best coarse of action.
No mycobacteria has shows up in a year and a half now.
However I just got over a bad case of pseudomonas.
I got so congested that he did another broncoscope with the wash. He said every branch was all clogged up . It took him twice as long as he usually takes for a scope.
I still use the coliadal silver but only like a teaspoon or two a day.
I started taking the clear lungs and I must say that that does help once I upped my dosage. Saw on the bottle you can take a couple every four hours at first and when I upped my dosage it really worked. It says once you feel relief to go to down a maintenance.
I also am using the herbs which I feel have kept the mycobacteria away. Now we will be treating the bronchectsis with the rotating antibiotics.
I am so glad that it sounds like your doing well.
Thanks for all you do for this board in education us.
Shari

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@pfist Great hearing back from you! It sounds lile you are on the right tack now. What did you treat the pseudomonas with?

@xfirerose

@windwalker yesterday I coughed up blood. I went back to my infectious disease doctor who was unhappy with me because my pulmonologist referred me to UCLA for consultation. So I had to beg them not to stop treating me. We agreed to start on azithromycin for 3 days a week. It has been a month since I was referred to UCLA and I haven't heard from them yet. My ID doctor finally agreedwith my pulmonologist that a biopsy at UCLA would be a good idea because the MAC has been growing fast and a sensitivity was never done. I just wish my doctor"s could communicate and not get their feelings hurt. It is so hard on me. My ID doctor also put in a request to my insurance for Arikayce inhalation. They faxed the request to my pharmacy; they gave it back to me very confused with it. I am confused too.. I am very tired and wish all I had to worry about was getting the right treatment and getting well.

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@xfirerose You have every right to be tired and frustrated. Now, more than ever. Is there ANY way you can get to the Mayo Clinic is Phoenix, Az.?

@joanney

@skylarkny Hi, I have not posted in most likely a few years, although I have continued to read most of the posts and have learned alot about this terrible bacteria that lurks in our lungs. I do find it confusing as to how to post back or remark on a posting I have just read, so I am not sure if I am doing this right. So firstly I would like to comment on the above post, I am so sorry for you that you spent such a scary night in Emergency coughing up blood, how horrible. I have had Maic and Bronchiectasis for several years now, and have never been on antibiotics, I have avoided them for fear of all the side effects that most people have mentioned here. I too am very active, biking and walking every day. I too produce alot of mucous, and work constantly trying to clear it from my lungs, with puffers, inhaled hypertonic saline, chest physio and aerobica. I cough alot at night. I had a Neuroendocrine tumour in my left lung 16 years ago,(never smoked, always healthy) and had a left lower lobectomy at that time. I think I started colonizing maic from either hot tubs, or tropical country shower heads, as my lung were most likely scarred from the big surgery and most likely I was immunocomprised.
I am now at the the stage of more changes on my last CT, and feel that I may have to go down the road of the big 3, but would still do everything to avoid that. I was trying to find any clinical trials that used inhaled Amickicin as a first line treatment. Any thoughts? cheers

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@joanney Hi Joan. I am glad to know that you have been following this group over the years. It is good to stay in the loop to learn about new treatments, new meds, and new tips. Have you considerered the treatment plan that I was put on to clear up mac and pseudomonas? I just did post it yesterday. I had a member just post that she tried the 'Clear Lung' (that @nick52 has been praising) and that has helped to clear up her mucous. There are more treatment choices than the Big 3 out there. You just have to find the right fit.

@anniepie

@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie

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@anniepie Supposedly taking a Niacin suppliment is supposed to ease or get rid of tinnitis. I heard that from a friend who had tinnitis and her Naturopath dr recommended it to her. It worked for her she said.

Liked by anniepie

@windwalker

@xfirerose You have every right to be tired and frustrated. Now, more than ever. Is there ANY way you can get to the Mayo Clinic is Phoenix, Az.?

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@windwalker of course I could drive there. Is there any service/social worker at Mayo that I can contact that can help me work with my insurance?

@windwalker

@pfist Great hearing back from you! It sounds lile you are on the right tack now. What did you treat the pseudomonas with?

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The pseudomonas I had tested that it was susceptible to all the antibiotics surprisingly. But because of all the plugging didn't relive the congestion. I used ceftin and then Toby. When he did the scope he tested for 12 different things and they have all comeback negative.
We will rotate with ceftin augmenting and doxy. I can't use cipro and sulfa because allergy to sulfa and reaction to cipro.
Fingers crossed.
Take care
Shari

@xfirerose

@windwalker of course I could drive there. Is there any service/social worker at Mayo that I can contact that can help me work with my insurance?

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@xfirerose Yes, there is. call their billing dept. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

@windwalker thank you very much. I will look into this ASAP.

@windwalker

@anniepie Supposedly taking a Niacin suppliment is supposed to ease or get rid of tinnitis. I heard that from a friend who had tinnitis and her Naturopath dr recommended it to her. It worked for her she said.

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@windwalker Thanks so much for this — I will try the Niacin for the tinnitus.
Happy Christmas to you Terri

@anniepie

@summer33 I have seen only my GP/primary carer. Having difficulty getting in touch with the Specialist because I am a 'public hospital' patient. (In Australia, many people on lower incomes go to public hospitals because they are cost free. But like the NHS in England you can't choose your hospital doctor). I will see the mycobacterial specialist at an appointment in 10 days time.
Yes Azithromycin can cause hearing problems and has some bad side effects but so do the other drugs in the big 3. But the Azithromycin is probably the most important drug for fighting this NTM.
For me, I was just a bit shocked to develop it so early in my treatment. However, so far the tinnitus I have is there but not too bad — it gets a little bit worse as the day goes on. If it remains and doesn't go away, I can accept it as the price to pay to treat this awful illness. (But no, I definitely don't want any of the serious side effects that this drug or the others can cause! Please not for me, or for any of us — I pray for that. The smaller side effects I will do everything I can to accept).
Ethambutol and Rifampicin / Rifampin (both in the big 3) can cause leg pain.and eyesight problems. Tell your doctor or specialist if you have them. Good luck to you, and to all of us. Annie

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Does anyone know of a doctor’s name or names that you might refer me ? I have been going to MD Anderson and they just refuse to follow up or give any treatment options. I was put in the Big 3 in 2009 and did well but they never even did a CT scan or any sputum cultures when i finished the drugs and they never even explained any side effects regarding eyes or hearing so I have been pretty much in my own . I am so fatigued that I am considering myself to be an invalid and did not know what to do. I found your blog and I am so thankful to all of you and now I realize how shabbily I have been treated at MDA . I was so ignorant I didn’t even know you should have a C.T. scan or sputum cultures . I will go anywhere to see someone who might treat me will a little dignity and caring. I am in Houston . Thank you!

@prelle1…You have been treated shabbily and deserve dignity and caring. We are here for you. I live too far away to recommend drs, but believe you will hear soon from someone who can help. Fatigue saps us of the energy to fight for ourselves. Can you get into see someone who will order bloodwork right away? There may be delays getting to see the pulmonary specialists at the best places like Mayo Clinic.
Anemia, vit D, thyroid, infection…..many more causes that can be fixed quickly. These are often associated with lung problems. (I've had them all)
Don't feel bad about not knowing what to ask for…so many doctors have not kept up with the best practices for MAC.
Good luck. You will get some answers soon.

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