(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

The pain in my chest has not been resolved. (Yet) It is very scary when it happens. The pain was so bad in early fall it was thought I had an aortic aneurysm, but thank the good God I did not. I’ve had sooo many tests. I do have severe spine issues which cause neurological symptoms. Acupuncture was suggested for pain, but my insurance doesn’t cover it. I can’t have spine surgery because the MAC has left me a tad too thin. I recently had a bronchoscopy and am waiting for the results. The MAC will still be there no doubt because the tests that did come back suggested “illness.” Presently, I am on the same regimen that Terri (our mentor) is on. (2nd year of that) Good nutrition and mindfulness are helpful. In terms of dealing with it, I guess I just take it one day at a time. I’ve cried. I’ve screamed. I’ve been angry because I had plans for my retirement. Mostly I am grateful I am still here. I do have tramadol for pain. I have a medical Marijuana card. I do not use it. I have never been a coughing gal. I don’t know if I have helped at all, but sometimes just knowing someone else has been in similar shoes and also has had that horrific chest pain and no cough is validating. I do not believe there is a cure for MAC. It can always come back after negative cultures. Hugs, irene

Irene - thanks so much for sending more information. I will pass this on to my friend Bonnie, who will be joining us at some point. (I have to show her how to navigate the system.) I am so sorry for all that you have gone through with this; I do know that Bonnie will find some comfort in knowing she is not the only one with these sorts of symptoms. Are the doctors you mentioned ones you have worked with? If anyone else has anything else to offer on my questions, I would greatly appreciate hearing from you. Thanks so much, Pam

@jasmine321 Wishing you all the best for your surgery and recovery in March. Please keep in touch. Take care Heather

@jasmine321 don't be afraid...this must be done...face it with courage and grace!

Hi all. I was wondering if anybody had info on Iron, I read somewhere not to take iron supplements, are we not meant to eat iron foods either. I am vegetarian and often need iron supplements. Not sure what to do. Thanks Heather

Hi Heather @heathert, the research on iron supplementation and mycobacterial growth has been contradictory. More of the research has been done in Africa with populations regularly having high iron loads in their diets, and even overloading of dietary iron on a frequent basis. in those studies, people tended to have poorer outcomes with mycobacterial infections.
Some other studies have found conflicting results -- iron supplementation even during TB had no effect on the mycobacterial burden in the lungs.
However, recent research with other populations found that if you routinely have low levels of iron in your diet, and have had some degree of anemia -- for example many vegetarians -- then supplementation with iron has no effect on increasing mycobacterial growth.
So if you continue to be a vegetarian, you should be safe to take iron supplements.
(See "Iron Supplementation Therapy, A Friend and Foe of Mycobacterial Infections?", R. Agoro and C. Mura, 2019 -- Pharmaceuticals 2019, 12, 75; doi:10.3390/ph12020075 http://www.mdpi.com/journal/pharmaceuticals).
Hugs, Annie

I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with another more serious infection during a bronch.
I was on 3 to 6 antibiotics for 8 years. After 2 years I no longer tested positive (sputum) for the MAC.

After surgery to remove the lobe with the other, more serious infection, I have neither.

Good nutrition, daily EXCERCISE via workouts on my tread mill to keep lungs clear, have been key. Basically, I never let it interfere with my life. Yes, sometimes I was tired particularly after my morning 'cocktail' of meds, but my husband was good at gently coaxing me on, and I would eventually get over the 'hump' and enjoy an active day.

Also key, get an adjustable bed. They are expensive, but necessary so that you don't sleep flat, I waited years, and found I should have followed my Dr.s instructions immediately. Also, eat light at night.

but really, the huffing, puffing excersize 4 days a week, keeps the lungs clear and seems to have been (and still is) my biggest help other than the meds.

Hi Heather @heathert, the research on iron supplementation and mycobacterial growth has been contradictory. More of the research has been done in Africa with populations regularly having high iron loads in their diets, and even overloading of dietary iron on a frequent basis. in those studies, people tended to have poorer outcomes with mycobacterial infections.
Some other studies have found conflicting results -- iron supplementation even during TB had no effect on the mycobacterial burden in the lungs.
However, recent research with other populations found that if you routinely have low levels of iron in your diet, and have had some degree of anemia -- for example many vegetarians -- then supplementation with iron has no effect on increasing mycobacterial growth.
So if you continue to be a vegetarian, you should be safe to take iron supplements.
(See "Iron Supplementation Therapy, A Friend and Foe of Mycobacterial Infections?", R. Agoro and C. Mura, 2019 -- Pharmaceuticals 2019, 12, 75; doi:10.3390/ph12020075 http://www.mdpi.com/journal/pharmaceuticals).
Hugs, Annie