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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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
boomerexpert
@boomerexpert
@boomerexpert
Posts: 499
Joined: May 13, 2016
I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital… same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.
@suenfl I’m also in FL…are you near the Mayo clinic in Jacksonville? If not have you someone who can get you there? https://www.mayoclinic.org/patient-visitor-guide/florida/becoming-a-patient
nick52
@nick52
@nick52
Posts: 325
Joined: Aug 31, 2017
I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital… same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.
Dear sue fil,
I think they haven’t found out what is really wrong with you. Maybe you should go for a second opinion. My specialist says the only way to be sure it is a MAC is with à broncoscopy where they take sample and send it to a lab. He says sputum analysis is
not a safe way to diagnosed. Do not take for cash what dr says ! Get second opinions.
suenfl
@suenfl
@suenfl
Posts: 21
Joined: Oct 16, 2017
I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital… same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.
I was diagnosed from a bronchoscopy
suenfl
@suenfl
@suenfl
Posts: 21
Joined: Oct 16, 2017
I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital… same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.
I am in Tallahassee, about 3 hours from Jax.
boomerexpert
@boomerexpert
@boomerexpert
Posts: 499
Joined: May 13, 2016
I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital… same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.
@suenfl and do you have someone to take you to Mayo as it seems you’re not well enough to take yourself…you’ve got to get there…
Liked by Colleen Young, Connect Director
suenfl
@suenfl
@suenfl
Posts: 21
Joined: Oct 16, 2017
boomerexpert
@boomerexpert
@boomerexpert
Posts: 499
Joined: May 13, 2016
I live by myself and haven’t been able to drive I in 8 mos. I am on Medicare and Medicaid.
Just checked…this doc in Tallahassee knows MAC/NTM’s: https://www.healthgrades.com/physician/dr-madhuri-sankuratri-y5f7h
REPLY
suenfl
@suenfl
@suenfl
Posts: 21
Joined: Oct 16, 2017
I saw her two weeks ago while I was hospitalized. She is the one that raised the ethambutol and rifabutin. Glad to hear that she is knowledgeable on MAC. Hopefully I will be able to be treated here in Tallahassee. Thank you!
REPLY Hi all,
I’m excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she’s been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those – as they gave her other things – and in the last month or so, has been home healing up. She’s struggling with the disease and I’m not sure how to help her. If anyone has advice or insight to our questions, I’m thankful in advance:
– While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
– Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
– My mother feels weak, has no energy, and says she’s very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she’s gotten worse than before; it’s hard to tell.
– My mother also has depression. It’s hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I’m going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
– Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.
Thank you,
Charmaine
terryb1
@128128terry11t
@128128terry11t
Posts: 206
Joined: Jan 07, 2017
Hi all,
I’m excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she’s been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those – as they gave her other things – and in the last month or so, has been home healing up. She’s struggling with the disease and I’m not sure how to help her. If anyone has advice or insight to our questions, I’m thankful in advance:
– While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
– Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
– My mother feels weak, has no energy, and says she’s very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she’s gotten worse than before; it’s hard to tell.
– My mother also has depression. It’s hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I’m going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
– Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.
Thank you,
Charmaine
I am very happy with my pulmonologist in NYC who is very knowledgeable and just as important, kind.
Dr. David Posner
178 E. 85 St. New York, NY 10028 3rd floor
212 737-0470
Wishing you good luck and success.
Jo Ann K
@jkiemen
@jkiemen
Posts: 429
Joined: Jun 23, 2017
Hi all,
I’m excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she’s been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those – as they gave her other things – and in the last month or so, has been home healing up. She’s struggling with the disease and I’m not sure how to help her. If anyone has advice or insight to our questions, I’m thankful in advance:
– While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
– Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
– My mother feels weak, has no energy, and says she’s very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she’s gotten worse than before; it’s hard to tell.
– My mother also has depression. It’s hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I’m going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
– Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.
Thank you,
Charmaine
I am wondering if the medications were stopped because they were making her weak. They tell me that allot of patients don't tolerate the combination of 3 antibiotics.
I guess it all depends on how her scans and symptoms are. I hope she is being seen by an MD familiar with the condition. Has her sputum bee positive for MAI and did they show the exact species?
JO Ann
Liked by liangctoo
ling123
@ling123
@ling123
Posts: 346
Joined: Apr 06, 2017
Hi all,
I’m excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she’s been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those – as they gave her other things – and in the last month or so, has been home healing up. She’s struggling with the disease and I’m not sure how to help her. If anyone has advice or insight to our questions, I’m thankful in advance:
– While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
– Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
– My mother feels weak, has no energy, and says she’s very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she’s gotten worse than before; it’s hard to tell.
– My mother also has depression. It’s hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I’m going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
– Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.
Thank you,
Charmaine
@liangctoo Hi Charmaine, I’m so sorry to hear about what your mom has to go through. I’m not a doctor. But I have done a lot of reading on depression and mental illness because I have loved ones who have and are still going through it. From what I have learned about MAI/MAC, unless your mom has had other problems with her lungs or other organs that have caused the decrease of her lung functions and drop of her energy level, having MAI alone should not make her feel week. However, depression can certainly make people feel physically sick and listless. Severe depression can even cause people’s immune system to become vulnerable which might have led to her being infected by this bacteria. If her CT scan does not show worsening of lung conditions, then I would actively seek treatment of her depression as priority for the time being. In the meantime, you might want to find out if she is suffering from other health problems that may also cause her energy level to drop. I have not been on any of these antibiotics. So I can’t tell you if it is normal for them to be discontinued for your mom. But I do think you need to actively seek treatment for your mom for depression as soon as possible. Depression is a tough illness to conquer. It may be a long haul. But it is very true that depression is the source of many physical symptoms. But people do not realize that and would try in vain to treat the physical symptoms rather than tackling the source.
Liked by Colleen Young, Connect Director, liangctoo
Elaine
@laneyk
@laneyk
Posts: 31
Joined: Jul 18, 2016
I have not posted in a while. I have been off the MAC meds for a year. I am doing well. My meds were not stopped until I had negative sputum results, twice. I continue to see Pulmonologist every three months and have a chest x-ray every visit. There have been no changes suggestive of return of MAC. I have scarring that never changes. I feel well and have regain the weight I lost. I hope this is encouraging to other MAC patients.
Liked by Colleen Young, Connect Director, heathert
@suenfl
I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital… same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.