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Posts (24)

Apr 13, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

We installed an air cleaning system to filter out any extra dust or pollen, it really helped my Mom, as the air conditioning made her uncomfortable sometimes, she liked it warmer than before,but it did help clean the air. We also had all the air vents etc. thoroughly cleaned as well as fireplaces. We installed outside doors over all doors so that we could close the door to the house before opening the outside, sort of lots of foyers. We also had a self supporting energy system, I don’t remember what they are called, so that if the electric went out it would not effect the air cleaning system or the oxygen she eventually needed, or the heating or air to make her uncomfortable. We also closed off the laundry rooms so that lint dust etc. did not enter the house. The doctor recommended these things. If you fly wearing a mask you will need a doctor’s note, that you are not contagious but are preventing breathing in germs from others potentially or they can refuse to let you board. Not a good thing. Also we used all natural products for cleaning as a lot of commercial cleaning agents are toxic when breathed even in small amounts by someone with lung issues, they can cause coughing and inflammation etc… We already had water filtration just the type on the faucet that everyone has, but she always bathed never showered, so that might be a good idea, we have had patients with aspirated aspergillus which grows in showers. Hope you find a wonderful new home. And good luck and Happy Easter!

Apr 13, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi, I must have missed this, do you have the link please, I would like to read through it. I have my appt tomorrow AM. Thanks! He has 33 years of experience
with infectious lung disease they say so I have some hopes for this being a real doctor
J I will advise if he proves worthy of recommendation. I appreciate everyone being here for me,
it is nice to not feel alone in this.
 

Apr 6, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

You wet your toothbrush in H2O2 rather than water and then make a paste of baking soda and a little salt to use as toothpaste, you can keep the powdered ingredients
together in a little tuperware container. Gosh my dentist told me this decades ago. But it works, most toothpaste has artificial sweetener in it which I am allergic to
J No don’t use bleach like CHlorox it is poisonous LOL
J A blast from the past
JJ
 

Apr 6, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I just want to say, and maybe I am out of line, and if so I really apologize I don’t mean to be. You are a great daughter to be concerned, to care, and to be a fighter for your mom when she is too ill to fight for herself. What I wanted to say to you is this; I am one of the few here, though some have noted that others in their family are prone to lung disease, who went through what you are going thru my mom and my aunt both died of MAC and other complications of said disease and I do know what you are going thru and how difficult. Please do not let this frighten you , there is no evidence yet that it is hereditary, it could be coincidence . I believe that there is a forum here for caregivers, someone will probably know the answer to that. Please take care of yourself, this is not an easy thing you are doing and you will need your strength to get you both thru it. At least now things have changed and there are treatments and options. I admire your strength and perseverance and ability to reach out. Take care of you also.

Apr 5, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Call Dr. Cook, at least get his nurse or PA on the phone, I think she should probably be taken off the medications immediately. Waiting list is great, but also
ask if he has a PA or colleague who could see her or talk to her in the meantime. She cannot continue to suffer until July. As a last resort, show up at the emergency room, and let them figure it out. Doctors hate to be told what to do, and most of them can
only follow protocols established by their institution for patients 1-1890000, they do not treat people, and if you do not fit the protocol to bad. Just went through this. Also do not absolutely do not take the milk thistle it is dangerous in someone that
has liver issues. If you want to try herbs see a homeopathic, DO, who is in the same office with an MD, they will combine herbs, vitamins, and minerals with treatments, and medications.  Good luck, sounds like we are in the same fight , wanting a real doctor,
who happens to care, and know what they are doing.  No one says she has to be on no meds, if the Rifampin is making her sick, through it in the trash and keep the other two. This is called a cocktail medication, the three, ideally doctors believe the 3 work
better together rather than singly or just two. But it is not written in stone.
 

Apr 3, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks that clears things up for me, and they finally gave me something for my splitting headache. My dog appreciates that, he has had a bath and a nice walk.
Which he really deserved for having to take extra special care of me for last month.
 
Looks like MAC is becoming more widespread and mutating quickly as well. Time for action, and people in the right places to pay attention.
 

Apr 3, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi, I had rheumatic fever when I was 8. And I have had a horrible time with allergies all of my life. Wonder if anyone else had rheumatic fever? Thanks for
your reply. I am very serious about getting to the bottom of this, and I am very serious about putting one of the researchers to work on it as soon as I catch him at work.
 

Apr 3, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Ask the new doctor, just call or email his office, he may want all of her medical records sent to him so be ready, and FIRE the current one immediately!!! You
hire them, they work for you, if they do a lousy job, or no job at all then they should go swiftly. You  get one body and it belongs to you. I keep asking “where have all the doctors gone”