Badges (2)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (47)

Thu, Jul 4 1:38pm · MAC and "Stabbing" Back Pain in MAC & Bronchiectasis

@sueinmn…I went through many heart tests for pain similar to yours. It turned out that the nerves in my back and around my chest were firing from agitation. Acupuncture resolved the problem. The heart and lung doctors were unable to suggest anything to help. It was my Chinese doctor who diagnosed and treated the problem.

Wed, Apr 24 5:52am · Yeast infections in MAC & Bronchiectasis

@jammer3437…Sorry to hear about the yeast infections. I use Candida Cleanse to get rid of them.

Sat, Mar 16 5:07am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@laura34…since Ethambutal can cause blindness, you need to see an opthamologist right away.Infectious disease doctor should refer you, if not, the doctor prescribing Ethambutol should. One of four patients taking it have problems. Good luck.

Tue, Mar 12 7:40am · Brochiectasis and Autoimmune Disease attacking the Lungs in MAC & Bronchiectasis

@noahs…it sounds like you've been hit with so many problems. I'm sure the people on this site can help you. Have you tried Postural Drainage? There are some position suggestions on Youtube. My lung problems were caused by acid reflux, so I sleep upright and follow a strict diet. I have had asthma for 45 years and found relief from nebulized medications.I also use an herbal lung cleanse. Good luck finding relief.

Tue, Mar 5 12:26pm · Avoiding pneumonia after Bronchiectasis diagnosis in MAC & Bronchiectasis

@kjellis…Welcome to the group. Many others will have suggestions, but I know waiting for a response is difficult, so I'll tell you what I've been doing. My Bronciectasis is caused primarily by acid reflux. I sleep in an upright position and that has made a world of difference. I schedule all medical appointments from April through November, never in the winter. My husband picks up groceries and my monthly medications and the rest I order by mail. I don't allow grand children visits in winter. Thanksgiving is my holiday, and we make Christmas a flexible quick visit, so they are the only exceptions unless they are sick. We have a couple made-up holidays in spring and summer. I use hand sanitizer every time I leave the house and a mask if I have to wait in waiting room.
I also use nasal lavage every other day. These things have worked for me after the 14 month big three regimen and several bronchoscopies showed that MAC was absent.I take Dr. Tobias's Lung Meister daily plus Candida Cleanse after tests showed my lungs were full of it. I've been healthy since.

Wed, Jan 30 7:29am · eyes my "Blurry" vision hasn't went away in MAC & Bronchiectasis

@cmcclure…You have had a frightening journey with so many diagnoses. I'm assuming VA means Veteran's Admin. Hospital and you are stuck with the care they provide. If it is permissible and you can afford it, I would suggest a comprehensive exam at Mayo or Denver's national Jewish hospital. There may be another specialty hospital studying TB that can help you sort things out. As for blurry vision, my infectious disease DR insisted on monthly eye exams with a specialist while I took ethambutal in case I got blurry vision or color blindness. Some ethambutal patients develop blindness, so it is time for you to get second opinions. You are in our thoughts. Getting angry at the care you have been given is a great motivator for seeking new doctors.We wish you better times ahead.

Thu, Jan 24 7:36am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@cindyrue…I agree with irene5 and tdrell. You need facility that will treat the whole body. If you are unable to access the best as tdrell suggests, find a PCP or the lung doctor's PA who will spend more time listening.I also suggest you advocate for yourself by reading about Chronic Cough and suggest Dr. jamie Kaufman's book. In addition I have found more relief from my chinese Dr who practices acupuncture. She treats the whole body and was able to stop my nerve related cough. This may seem weird, but the Chinese believe that lung issues stem from sadness and it helps to get therapy for the terrible loss you've suffered.

Sat, Jan 19 8:58am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@pamelasc1 …I use Dr. Tobias's Lung Meister which is in pill form and works for me. I've gotten off oxygen and haven't had an exacerbation in a whole year. I also sleep upright to get rid of acid reflux.