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:
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
Liked by jameck, chinasmom, lauriefrancis, lindam272 ... see all
@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 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.
Liked by Terri M., Volunteer Mentor
@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
Liked by Terri M., Volunteer Mentor
@pfist Great hearing back from you! It sounds lile you are on the right tack now. What did you treat the pseudomonas with?
@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 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.
@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?
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
Liked by Terri M., Volunteer Mentor
@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 Thanks so much for this — I will try the Niacin for the tinnitus.
Happy Christmas to you Terri
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!
@joanney
@sueinmn thank you for you reply. Do you mind me asking where your Doctor that has 20 years experience with treating Maic is located. I am in BC and have been pretty happy with my respirologists, but it is always great to know of other experts out there, especially if they are in Canada. I have considered Mayo Clinic, but have not got to really looking into yet. Good luck with your continued treatment, I will take note of how you take all the meds at bedtime.