Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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 - 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
unicorn
@unicorn
@unicorn
Posts: 157
Joined: Jun 10, 2017
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
@sophie1019, I hope that you are no longer drinking your tap water or showering in it (take a bath instead) Wisconsin has the most infected water in the country with MAC organisms. You can boil your tap water for ten minutes to make suitable drinking water. Be sure to turn up the temperature on your hot water tank to 130 or higher. Wisconsin is one of the hot spots in the nation for incidence of MAC.
unicorn
@unicorn
@unicorn
Posts: 157
Joined: Jun 10, 2017
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
Hi Terri, just wondering if you sent the doc from Vancouver’s letter to Mayo and if they responded? I just feel worse and worse especially at night and feel I have to do something. Planning a trip to europe in May and worried I won’t feel up to it. I’m wondering if any researchers ever contact you for people to staff their clinical trials. I just kind of feel like I am running out of time. It’s such a wonderful time of the year with so much family around and all I want to do is go to bed and breathe under the covers, hurts less. Anyway, wah wah poor me…Is there any way to petition drug companies to do more nitric oxide tests…sorry, just rambling. Hope everyone is ok. xo
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
@unicorn , No I have not forwarded that letter to the Mayo. You may re-type it and mail it to my doctor yourself and ask what he thinks. You could try mailing it to: Mayo Clinic Jacksonville, Attn: Dr. Jack Leventhal, 7th Floor Davis Building, Jacksonville, Fl. you will have to look up the zip code. I am sorry that you are feeling so badly still. You may want to look into seeing doctors at one of the Mayo clinics. I think that the one in Jacksonville is no longer accepting new patients.
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
@unicorn, Have you ever tried having bronchial washes done? I know of two people that that has helped them. It is a process of squirting saline into the lungs to wash out the infection and gunk. It is done with a bronchoscopy. You can Google this, learn more about it and ask your doctor about it.
nick52
@nick52
@nick52
Posts: 341
Joined: Aug 30, 2017
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
Dear Unicorn
You should at least go to the emergency. Don’t fool around with pneumonia because that could be very dangerous. Have you tried clearlung from health food vitamine store. It might worth it better then not doing anything. Good luck!
unicorn
@unicorn
@unicorn
Posts: 157
Joined: Jun 10, 2017
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
Never heard of it but will definitely request it. Thanks! xo
tdrell
@tdrell
@tdrell
Posts: 530
Joined: Aug 21, 2016
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
sophie1019…windwalker is sooooo correct re Wisconsin and its MAC infections…l live in SE Wisconsin….It is considered along with florida Hawaii etc a hot spot…
l drink bottled spring water to avoid tap water….the pipes are full of the biofilms of MAC that are formed. l make my own ice out of the spring water….l do not drink water from hose in refrigerator or use its ice.tdrell
Liked by Terri Martin, Volunteer Mentor
Jo Ann K
@jkiemen
@jkiemen
Posts: 427
Joined: Jun 23, 2017
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
I also live in South East Wisconsin in Walworth County. Do you live near there? I have also heard from a Pulmonologist I went to this week for a second opinion that it is everywhere in Southeast Wisconsin. I heard that well water is better than city water. Is that what others have come to understand?
Jo Ann K
@jkiemen
@jkiemen
Posts: 427
Joined: Jun 23, 2017
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
Companies do have Compassionate use protocols. I think we could petition for that. I can’t see how it would hurt to try any options
Sophie
@sophie1019
@sophie1019
Posts: 97
Joined: Jul 07, 2016
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
I live in milwaukee….
Jo Ann K
@jkiemen
@jkiemen
Posts: 427
Joined: Jun 23, 2017
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
We are in pretty close proximity. I am in Milwaukee at least every Friday for work and some weekends. I just went for another opinion with Dr Lipchik at Froedert. He seemed good and at least got some baseline labs on me, rechecked my Immune function which is a little low and VItamin D levels. He said that is the only supplement he would recommend to help immune function. I told him about the research I was doing on Nitric Oxide studies and will send him a copy of what I have found. 3 different companies. Maybe they could get involved with one. Do you like your MD’s?
tdrell
@tdrell
@tdrell
Posts: 530
Joined: Aug 21, 2016
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
Jkiemen and Sophie1019…. I live close to Milwaukee in West Bend…. my local ID And Pulmonologist are out of Froedert tdrell
nick52
@nick52
@nick52
Posts: 341
Joined: Aug 30, 2017
I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year
According to Dr Balch in his book Nutritional Healing the best water is the distilled water. It might be worth research it!
@boomerexpert
Any trials for us are great news! Thanks, @heathert