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

Hi Katherine, thank you for the reply. I was treated for the Kansasaii by a infectious disease doctor for over a year. I had to stop the treatment because of liver issues. He hoped the micro bacteria was gone. I had no more trouble for many years. When I did have the bronchoscope done in 2009, the pulmonary doctor found no Kansasaii. However the disease had ruined my lungs. I did have staph at that point. Right now if I go to the emergency room for anything, when they do a lung X-ray, they want to send me to a TB room! It has happened. I carry the info around showing I just have scars. I hope that the patients on this forum have good doctors. You are right- they are hard to find! There are few that know MAC and less that know bronchiectasis. It can be such a rough road and you need to be your own advocate! Thank you for helping so many find the help they need!
Mary Jo

Hi Mary Jo, what a rip about the liver issues .. it certainly can happen!

I agree about traveling with info on your disease! I ALWAYS travel with a little brochure put out by the NTM about MAC just in case .. but your info about "if I go to the emergency room for anything, when they do a lung X-ray, they want to send me to a TB room!" is REALLY good info for our Forum! Thank you! Since I have not been in a hospital since my two children were born .. I had not given this a thought .. GOOD info to share!

Mary Jo, keep coming back to our Forum .. we are all this journey together .. helping each other! Hugs! Katherine

We're in this together...and together we'll make sure we get better care! Hey, let's start our own version of the ice bucket challenge! Just no ice, please... 🙂

I don't know if i am posting correctly! here goes. I am 76 year ol lady! Was hospitalized last Oct .... x-ray showed NADA. i do have COPD. For five days was treated with MASSIVE steroids. Hospitalist ordered CT/contrast ...... sent me home on the Fri. after test saying it showed nothing and i was not getting welll there. So .... was sent home with MORE steroids. Could NOT function. AT follow up with MY N.P., she said the Ct showed
both lungs had pneumonia. She sent me to Pumonary Dr. He ordered a sputnum test. (they also did one in hospital but said nothing about it.)
Six weeks later, Dr. Pulmonary called me to come in .... told me i had Macobacterium Nebraskan....i do not remember how to spell it. His office staff left nothing to be desired ... so when he made appointment with Infectious Disease doc at Novant in Winston Salem .... I live 34 mins away ... I went myself to get discs, etc etc. Dr. Priest at Novant ..... even WITH directions from hospital could NOT pull up the CT himself. However he said the notes showed nothing signifigant. and dismissed me. I had of course by now on my own stopped the steroids. I was on Levaquin in hospital.
Now nausea was rendering me useless. On an intuition, saw ENT doc here in my hometown. He ran camera down my nose .... could not see any
infection but felt there was on and he put me on a hi powered antibody ... Vantin? something like that. After prescribed time ... no better. Still coughing up suds, pain ... so went back to him. This time he did a sinus CT. showed very deep pervasive infection. Put me on rounds of 3 different antibiotics
with baby dose of steroid .... for six weeks. In the midst of the last round .... the nausea began to abate. and i DID get much much better ... until ..........
began to experience upper respiratory symtoms again early November of this year. so bad on a weekend .... went to Urgent Care. would NOT inhale steroids ..... xray showed nothing ... accepted Albuterol inhaler and Levaquan. sp? The following Monday kept a pre op apt at hospital for hip replacement the 19th of this month. I continued to get worse however. Was working with scheduler nurse at Orthopedic surgeons's office ...... followed through with next pre op appt. bloodwork slightly ... very minor .. off .... everything else ok. no MRSA .. urine fine. When Lisa (wonderful woman
from Ortho) called me with results she could clearly hear i was not well. Intervened and got me into see MY N.P. She took one look and said OH MY! HO! told her i wished to go on with surgery but wasn't sure i could and she and I are going to make decision together. She immediatly took me off
Levaquin .,.. put me on Arithro .. zpak and again ... baby dose of steroid which i am tolerating. She had done a little research into the MAC i have
and finally said ..... NO ... to surgery. So ... it is postponed. I absolutely do NOT KNOW WHAT TO DO NEXT.
The Dr. i saw in winston salem at Novant, Dr. David Priest had given the go ahead for surgery. We now have a new Pulmonary Dr. here in Elkin where i live. My N.P. said she did not think a CT/wcontrast would telll if pneumonia or MAC and my bloodwork did not call for CT. BUT ... she is now wondering if that is what i had a year ago. ??????????????????????? Having had paralytic polio when young .... was several years ago i learned about Post Polio Syndrome. Verified by docs and spinal fluid. Fatigue is a part of PPS .... as is pain, etc ...... but i can cope with that. I meditate ....
exercise ... have wonderful caring friends .. have been an activist all my life but no longer.
Any ideas folks? There has been a dreadful upper respiratory virus going round here ....... it is just so hard to figger out what is tit and what is tat!
I do MAKE myself MOVE. But the fatigue is awful. and i do hurt in right lung area with this. probably all the coffing!!!!!!!!!!! ??????????
One question i do have is .... can "dese bugs" migrate? Is that a sensible question? I quit the FLucotinase...sp? Zycam spray seems to help
much better. I was told that many people are walking around with this particular MAC and don't even know it. The first doc who found it said i could have gotten it anywhere. I garden assiduously and he thot probably there ..... as am inclined to continue working if i get poked er scratched er whutevah! Have to work on my bum because legs are not strong enough anymore from PPS. whatta mess! HO!
I do know that without HUMOR ..... none of us could put up with whatever it tis that we deal with. That and meditation are my go to AND
i do exercises in the hot water of the BATHTUB!!!!!!!!! It CAN be DONE! hO! Thank you for taking the time to read this if i can figger out how
to get it to stick! nelisabeth

Hello Nelisabeth, Welcome! I am SO glad you have found our Forum. You are being tossed from pillar to post by the medical community .. you MUST take control of your life and your health! You can do this by educating yourself on your disease .. .. read past pages of this Forum .. you have already been told you have a form of Mycobacterium. You have been too many places/too many doctors/too many drugs. Remember "Too many cooks spoil the broth!" No MORE!

If I was sitting in your shoes here is what I would do:
1. CONTACT BOTH THESE DOCTORS YOU MENTIONED (see below) .. ASK FOR THE "RECORDS DEPARTMENT". TELL THEM YOU WANT A COPY OF "ANY/AND ALL MEDICAL RECORDS INCLUDING OFFICE NOTES". Ask them what you need to do to get these copies. TELL THEM "ANY/AND ALL MEDICAL RECORDS" .. YOU ARE SPECIFICALLY LOOKING FOR SPUTUM CULTURE RESULTS! Usually you have to sign a form. If they will email you that form and allow you to sign it/scan it/email it back .. that is the quickest way to go. If they cannot .. or you are unable to do it .. ask them to mail the form to you ASAP! Start keeping a notebook of EVERY medical contact you make: name of person you spoke to/employee or extension number/date/time/phone number. If you do not get this form in a reasonable period of time .. FOLLOW UP with another phone call!

HAVE THESE RECORDS MAILED directly to you! Tell them you are getting a second opinion BUT have found the medical records get lost at the medical facility and you want ALL the records in your OWN hands so you can hand them DIRECTLY to the doctor .. no chance of them getting to the wrong doctor/wrong department etc. Be ASSERTIVE! Tell them it is for ongoing care .. do NOT agree to pay for them .. speak to a Supervisor if necessary. If they insist you pay .. then have them mailed to a local doctor you trust .. call first and get permission .. then you can later pick them up yourself for getting that important second opinion. These records will show what strain of Mycobacterium you have plus details.

test. (they also did one in hospital but said nothing about it.) Six weeks later, Dr. Pulmonary called me to come in .... told me i had Macobacterium Nebraskan " (I wonder if this was: Mycobacterium nebraskense)
https://www.ncbi.nlm.nih.gov/pubmed/22308639
2. RESEARCH for an INFECTIOUS DISEASE DOCTOR. Call .. ask them "How many MAC patients have you treated in the past 12 months?" You want someone who KNOWS our disease! Tell them your history .. q quick recap of what you have told me. Develop a quick outline .. tell them it is URGENT to be seen ASAP .. GET THAT APPOINTMENT ASAP!
3. By this time you should have gotten your records in your hands .. go to that appointment. Request another sputum test REQUESTING a test to find out WHICH antibiotics will work against the particular stain of Mycobacterium you have. Request a Ct scan to show just where the mycobacterium is in your lungs .. PLUS to establish a baseline for the future.

YOU SAID: My N.P. said she did not think a CT/wcontrast would tell if pneumonia or MAC and my bloodwork did not call for CT. MAC IS DIAGNOSED EITHER FROM CONSECUTIVE SPUTUM TESTS OR A BRONCOSCOPY. The CT scan with contrast however WILL show what/where the lung damage is. Blood work will NOT diagnose MAC!

4. Do NOT even think about your surgery until you get this issue straightened out.

Nelisabeth, don't give another thought to where/how/when you got MAC .. it matters NOT! Right now" put your energy into what you can control and let go of what you can't control!" Right now get started on 1 through 4 items above .. AND do not see any more doctors pumping you with drugs without testing your sputum to see which ones will kill the bugs! I had this happen to me in 2003 with pneumonia .. before I knew better to REQUIRE they culture my sputum to see which antibiotics would work against WHICH bug! The doctor pumped me with 5 rounds of antibiotics and 3 rounds of steroids. I was SO sick! Unless you are urgently sick and need an Emergency Room .. do the above 1-4 .. and IF you get taken to the Emergency room .. have the above printed out .. and REQUIRE they follow the guidelines I've set above.

Good luck to you .. PLEASE keep us posted .. let us know how you are doing in this tough time. Sending you a Hug!
Katherine

I'm so sorry for your wife's and your frustrations with your ability to get good care. I am having the same problems. Ive had 5 pulmonary doctors. The first was wonderful. I was coughing up blood and with in a week he did my first bronchoscopy and diagnosed bronchiectasis in may 2014. But he had to go out of the country to be with his family. The others have made me feel like my health was nothing to be concerned about. I'm in st. Louis and I've been to some of the best dr s at Washington university. They said i had cf , then said i didn't but that i have non-cf lungs. Then i felt like wasn't important to their clinic anymore. So my RA Doc and primary care Doc are tring to find an infectious
Disease specialists. Im waiting for the call this morning. Maybe you and your wife can see an infectious disease specialist. Be sure you tell them your couing up blood and need to be seen now. Sometimes they can put you in as the first or last appointments of the day. I also have splitting nails and finger tips and toe nails that resist any treatment. Iv requested 4 times to test for fungal markers in blood and went last Friday so im waiting on results before i start my big 3.antibiotics. also in need of glasses after my required eye exam before starting ethambutol. Lots to do today. Take care to you and you wife feel better really soon! YOU ARE LOVED!
Becky

Oh Katherine, I cannot tell you how much this means to me! Have always been an advocate for others .... have tried to be for myself ... but there is a terrible lack or lapse .... dunno .. of communication between doc to doc and computer at hospital being incompatible with other systems. aaaaaargh! so we all have been flying blind. It was already in my thinking to request a new
sputum test from the new Pulmonary doc here. I WILL DO THAT. My N.P. WILL cooperate. She is truly an advocate.
Thank you sooooooooooooooo much and yes, will see if kin figger out how to copy this off .. .if now will save. and forward to
docs. May i keep you posted? I do NOT believe i can any longer tolerate the steroids. At age 76 .... headin fer the big ol 77 ....
sometimes less is more. I so agree. Wish i could hug you in person!!!!!!!!!!!!!!!!!!! Peace .... me ol nelisabeth

Yes ..... Nebraskanse .... sp? The Pulmonary doc who identified it said i MUST go NOW to see I.D. doc which i did but he could not read the
scan .... puter incompatible. nelisabeth. gittin on it TODAY! HO!

Kay, you are SO totally correct!! In my absolute "paranoia" .. now much to my chagrin I began to try to anti mycobacterium every water source in my home! In retrospect .. SO SILLY! Luckily Dr. Aksamit brought me to my senses! Truth is NO ONE actually knows exactly how/where we get mycobacterium in our lungs. It is all over our bodies .. it is in water .. it is in the soil .. it just is NOT supposed to be in our lungs. But not enough research has been done to figure out how/why it gets in our lungs.

So my wild goose chase was silly .. fear drove me and I'm not afraid to admit it. Even if we have GERDS/reflux filtered water is not an issue/does not help. With GERDS the theory is that GERDS MAY be a breeding ground for the mycobacterium ie .. as the reflux sits there it BECOMES the breeding ground for mycobacterium. One theory only .. no one knows.

Thank you for pointing this out .. it is NOT even proven that we get iMAC/MAI from "breathing it in" showering .. just one more theory. LOTS of theories .. not one single PROVEN one. Wish there were! All we can do is take shorter showers .. no tub baths ..stay away from hot tubs .. perhaps wear a mask while gardening .. etc. The usual precautions. Hope this help? Katherine

Nelisabeth, again, I am SO glad you found us!! Trust me .. I've through the wringer on this thing also! I am so happy for you that you see a light at the end of the tunnel! You go girl! I am age 73 and I feel we can STILL conquer the world .. just let us at it!

1. If you have "Word" a program on your computer .. just Copy and Paste to your Word program all this information
2. If not: Take the email on your computer/FORWARD/on your keyboard .. it should bring up the full email. Then: hit CONTROL AND the letter P at the same time and the email should print out.
3. If you can't figure either of the above out . . call a techie friend and ask them how to do it?

Would LOVE to have you keep us posted. You will find the most kind caring people here on our Forum .. they have all been on the MAC journey and will travel this with you! Hugs to you! Katherine