Katherine.....glad hubby doing well....now BOTH of you take care and get rest.Terrid

Yay!!! Hugs to hubby

Dear Katherine, I am so glad your husband is home from the hospital. I missed the original post as to why he was in the hospital. I do understand what is required as a loved one who happens to be the caretaker. My husband is a paraplegic, so when he is in the hospital I stay with him and take care of him. Blessings to you and healing to your husband!

@lbigboy .. do you have a first name .. more personal. Thank you for your kind thoughts! It must be a tough go for you as a caretaker .. are you aware of Mayo Connect as a Connect for Caregivers? https://connect.mayoclinic.org/group/caregivers/

As with ALL things in life .. we have people in our lives who love us .. BUT they really don't/CAN'T "get" what we are going through because it is NOT what THEY are going through. It is NOT because they don't love us/care about us .. it is just because it is NOT THEIR life experience. So sharing your thoughts/concerns/hints on Connect Caregivers MIGHT be helpful? Just a thought. Again, thank you .. each day he is getting a bit stronger .. walking the halls of our condo. Hugs to you! Katherine

Hello Katherine, my name is Linda. I was diagnosed with MAC and bronch. about a year and a half ago. Due to positive sputum again for MAC with coughing, it is recommended that I go back on the medications. I only made it 8 months for my last treatment duration due to high liver counts. I am being referred to OHSU, CDC, for treatment this time. I am awaiting my appointment. I have a couple other things that I was wondering if anyone else has, chronic sinus infection and an open ganglion on my finger. I had it drained twice and surgery once and it is still needing another surgery however because the ins. doesn't feel it is life threatening they don't want to cover it. Does anyone else have unusual things going on along with the MAC and are they in any way related?

<br><br><br><br><br><br><br><br>Yes chronic sinus infections for most of my life. Wrist ganglion cyst. Stomach issues. Edema, swelling thoracic, abdominal, legs, arms, ankles feet. Migraines.<br> My mother and my Aunt both died of MAC, they both also suffered from chronic sinus infections and allergies, and migraines, and my mother with IBS. Lupus for my Aunt, Hashimoto’s for my mom. You are the first to mention the ganglion cysts let me know if more<br> have this also, it goes hand and hand with carpal tunnel. And I have found out how to find a MAC doctor, get past the employee only signs, walk into the office complex of pulmonary and go up to the first very smiley secretary and loudly say do any of the doctors<br> at this hospital have any experience with infectious disease like MAC for example, I have a really ugly DVD in my hand. I have never been accused of being subtle and I got tired of the beauracracy, see I can’t even spell it, so I just cut thru the red ribbons,<br> I have appointments with three different specialists now promptly. I will let you know if this hospital can step up to the plate. But, for your help, it was recommended that ENT should be on the team to really investigate what is going on in my sinuses as<br> it is connected to my lungs visa vis I breath stuff through my nose like air and possibly microorganisms. I thought that advice was correct. And now that you mention it, a cyst and a nasal polyp are closely related, and one of my doctor friends says that can<br> be a cause of chronic sinus infections. You may have a very good thread going on here.<br> <br><br><br>

Since there's no known cause for ganglion cysts, not sure anyone would know if there's a connection between yours and MAC...guessing not but an ID doc would be best person to ask,I believe. Found this if it helps: http://handtoelbow.com/ganglion/ Glad you're going to great folks for this treatment...ask them about connection. Are you on other meds that might cause liver issue or they're sure it was the MAC meds...?

Good for you...not time for subtlety when your health is on the line. I've read that sinus problems can be related to the MAC...others that are inflammatory may be auto-immune...separate specialty as I'm sure you already know

<br><br><br><br><br><br><br><br>I am being told that auto-immune and MAC go together by my colleagues, is this the experience of others here?<br> <br><br><br>

The connection: folkls with auto-immune disorders tend to take meds that suppress the immune system thus leaving it vulnerable to a MAC infection, similar to those with HIV years ago when MAC was an opportunistic infection. It is still for those of us with broken immune systems (from RA/Lupus/Crohn's/ cancer treatments, etc.), but not so for those with normal systems...