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

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...

MAC is an infectious disease that needs a susceptible host. I think the connection between the two might be the fact that some autoimmune diseases (ex.sarcoid) have a possible correlation to certain environmental factors which is the common denominator between MAC and autoimmune disease. Interestingly, my husband who has sarcoid had a finger ganglion cyst and I (MAC) have chronic sinus infections. And the plot sickens! 🙂 Irene

Yes sinus infections and a constant stuffy nose, especially on the right side. Allergies all my life. Carpel tunnel operations on both hands. Will be interesting if these are all related.

@donut
Sent on Thu, Mar 23, 2017 at 9:21 am

March 1, 2017 I visited Dr. Aksamit ...a message I want to get out is that he is the very best!! Anyone needing help go to him at Rochester Mn. Also, I apologize for long delay have been trying to work and rest you guys know the way it is...Uckkk....But God willing we all will get past this. I ordered the book "Beating Bronchiectasis"by Daniel Pecaut. I read it in one night. WOW...was I impressed!! I couldn't put the book down. I wish I could tell him how he has inspired me to carry on. This has been a horrific journey and I want to succeed. If you want to understand more the book is only a little over $3 plus shipping and worth the investment. I just ordered the "Expand-A-Lung' one for me and one for my momma. This I will let you all know as soon as possible...how it works for me. I love you all so very much.. Donna
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@donut Donna, I really apologize for not answering sooner .. my husband was ill ..in the hospital .. AND for some reason your email went into my "Spam" file which I don't check that often .. goofy! I hope you don't mind but I am moving your post to the Main MAC page so others can see your positive attitude and what a great experience you had at Mayo!

My husband's best friend has developed MAC (not as many men get it) .. I recommended the 'Expand-A-Lung' .. and he just LOVES it .. uses it several times a day! So glad it is working for you .. anything we can do to help increase our lung capacity .. YEAH! Donna, keep us posted on your progress .. good to hear from you! Hugs! Katherine

@jentaylor Jen, have not heard from you in a while .. wondering how you are doing. Could you check in and let us know? Sending you a hug! Katherine