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

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

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

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

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine