← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Discussion
Comment receiving replies
@katemn

@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

Jump to this post


Replies to "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..."

You made my day.  I thought I was the only one with a severe computer skills deficiency.  I just hit “respond”, write and send it off.  I can only hope that it reaches the intended destination.I am looking for a heart under reply to acknowledge that I have read an email.  I have a MAC so if someone is out there reading this, would enjoy knowing where to find the “heart”.Terry

Annie, you’re HERE! You’re IN! All you have to do now is post .. just like you did with this one! Any questions .. comments .. tips .. whatever! Welcome! Hugs, Katherine

@128128terry11t, Terry, LOVED the way you put it! At age 73 now I say my “gratitudes” .. I have a good life with many things to be grateful for! Hugs! Katherine

Bronchiectasis .. just listened to a GREAT video .. give it a try! Really good info! Thanks to Mayrjo I am learning SO much more about my own Disease Bronchiectasis than I’ve ever taken the time to learn! Frankly when first diagnosed I read a lot .. but kind of forgot about it .. just cough away. This is really helpful .. thank you Maryjo! Hugs! Katherine

WONDERFUL INFO FROM M.D. Dr. William Girard of University of Texas Health

Hi,
I did not read your previous report about changing doctors. I know many feel that they have to go to someone associated with big centers. Personally, I am very comfortable with the pulmonologist I see. Everyone takes the same medicines and abide by the same guidelines.
As long as I continue on the regimens of medicines, improve and have the excepted follow up with imaging and sputum cultures, I see no reason to go to the expense and time to travel to a major clinic. If those things are not met, I will seek help elsewhere. At first I had to get another opinion because the doctor I was seeing did not start MAC meds. I got an opinion on the same tests he had done and was sent back to see another for treatment. Saw the new doc every month and had chest x-rays each time. 1st month on meds big improvement. Was on the meds 3 months, sputum came back negative. Took the medicines next 12 months with 3 mo visits and x-ray improvement each time. I have been off meds for 4 mos. Had visit and x-ray @1 mo post and x-ray and visit @4 mo post. Have a sputum culturing now. Had blood drawn a few times. What more could anyone have been done?

Now if, after reading from others on this forum, he had not done everything, I would have probably sought another doctor.

It is a difficult disease and hard to cure, thus the time taking medicines. I tried to not let it consume me and tried to do the best I could and not keep it on my mind constantly, but still do everything right.
The reason I have written this is I feel like there might be some out there that for one reason or another can’t go to the major centers and I don’t want them to think they may not be getting adequate care.

Anyone have a name for an ID doctor on Long Island, NY who specializes in MAC or has seen a lot of patients with MAC?Terry

How do I enter a diagnosis and ask others for comments?
 
Del  C  Revels
Tampa Fl

Nebulized antibiotics… they do exist so why the lack of ability to do this w/MAC meds?! Also he doesn’t mention another source for its onset- RA – which is my cause…

I’m right there with you.  I am 72 years young (sort of) and grateful for everything.  Trying to be like the energizer bunny — sometimes I make it, sometimes I don’t.  Having a tough time with severe nervousness, tachycardia, severe insomnia, and high blood pressure. My local ID Dr says that she never heard of these symptoms!!!  My local primary said to go off all antibiotic meds and go back one by one to see which is the culprit as the local ID put me on all 3 at once.  He even suggested that it all could be from nerves.  A real throw back to the 1950s when all was blamed on nerves.  Don’t you just love it!  Can you imagine that horrific advice from both!!  Will be changing doctors for certain.  This support group has toughened me up.  I settled for kindness and now I won’t settle until I find competence.  Scary that almost all of us know more than the physicians who treat patients like us.  Scary and frightening! I am looking forward to the road being a less less bumpy. 

@laneyk, Elaine, what a GREAT response!! Thank you for taking the time to write it! You are SO absolutely correct. If any new person reads the pages of our Forum .. they will have done their “due diligence” . will truly have educated themselves on their MAC disease .. AND then I feel will be FULLY capable of advocating for themselves in their health care. That INCLUDES being able to judge whether their current Pulmonologist is knowledgeable enough to properly treat them .. THEN if they feel they do not .. smart enough .. knowledgeable enough to seek out a 2nd opinion .. UNTIL you DO find a good MAC doctor.

As you said .. this does NOT require the expense of travel to a major MAC center .. JUST educating yourself to the point that you can properly judge the care you are going/are getting. A LOT of that education you can find right here luckily. Wish it had been available to me when I was first diagnosed in 2007 .. would have saved me a lot of heart ache. So Again, Elaine .. really good post .. it will help people be reassured in their decision to seek local GOOD MAC doctor if available! Good job! Hugs to you! Katherine

@128128terry11t, Terry, I just LOVE your ” This support group has toughened me up.  I settled for kindness and now I won’t settle until I find competence.’ You go girl!

Terry, truthfully what delights me even more is the change from ‘Desperate for help” .. to this new tough cookie!! I just love it!! This group can feel SO proud of itself to know that we can help a newly diagnosed MAC traveler on our shared journey in this manner! That we ALL remember how scary it was in the beginning .. AND continue to reach out to new people because of this. And Terry, I have every confidence that as you are able in the future .. you TOO will ‘play it forward’ .. help others as you have been helped. This is what our community is all about! I am so proud of you! Hugs! Katherine

Boomer, no ONE video can have all the answers .. just one more piece of the puzzle to help us along on our journey … perhaps a nugget of information that someone on our Forum was unaware of. . that may help them Katherine