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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .
Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.
I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!
As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!
You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine
Replies to "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..."
<br><br><br><br><br>Somebody commented about not needing to go to the 'Big Box' medical <br>institutions for good care. I go because I am a complicated case and my drs can <br>benefit by learning from my illness.<br> <br><br>
@windwalker, Terri, the report I was referring to .. the gene I have .. interesting that BOTH you and I have it .. AND that Dr. Aksamit was interested! :
Alpha-1 Antitrypsin Deficiency The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. Smoking, which can inhibit what little AAT protein an affected person does have, increases the risk of lung disease.
..Hugs! Katherine
@windwalker, Terri, I commend you .. ONLY through research at the "Big Box' medical institutes will there be established a LINK between MAC and genes!! By sharing your journey with MAYO Clinic .. they ABSOLUTELY CAN learn from you for the benefit of ALL of us with MAC .. and all other lung issues .. thank you! Hugs! Katherine
<br><br><br><br><br>As a 'carrier' of this gene, I am not supposed to be affected by that. But, <br>I seem to have all of the lung troubles of a full blown ZZ Alpha! I have <br>received the Alpha-1 newsletters for years, and occasionally there would be <br>articles about there seems to be some connection, but they haven't figured it <br>out yet. (carriers getting as ill as full blown Alphas) They tested my AAT <br>levels and said they were enough to protect the lung; albeit, the level was at <br>the low spectrum. I think they will find there is some kind of correlation some <br>day.<br> <br><br>
<br><br><br><br><br>Same here Terry!<br> <br><br>
<br><br><br><br><br>David, I think most of us on this forum has both. You are in the right <br>place. -Terri M.<br> <br><br>
<br><br><br><br><br>Strange, but a whole weeks worth of emails from this site from the first <br>week in Jan, suddenly appeared on my computer. I apologize for not responding <br>sooner, Terry. I hope you are doing so much better these days. Hugs -Terri <br>M.<br> <br> <br><br>
@david1952, David, haven't heard from you in a while .. wondering how you are doing? Just let us know so we don't worry! Hope all is well! Hugs to you! Katherine
Hi Kate and all,Having a good month - gained 2.5 lbs.! Appetite getting better. Still testing positive for MAc after 6 months on meds, but cough is moderating, so that's good!Blessings to all,David
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<br><br><br><br><br>I am a carrier for the Alpha-1 gene. My mom died at age 58 from it. So many <br>carriers have serious lung issues and they don't know what the connection is. <br>For right now, they say there is no connection, because they cannot prove it. I <br>believe there is because so many carriers seem to get MAC and <br>bronchiectasis.<br> <br><br>