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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
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
Replies to "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..."
@bruce668 goodluck and sending you lots of well wishes to you and your wife, sounds like you both are on the right track to be helped the way you should have been along time ago. I know it is so frustrating when doctors dont believe us.We have to fight for everything, I I tell my specialist things she doesnt know, thanks to this forum I have learnt lots, and she is learning lots also. Keep us posted.
@bruce668 Bruce, wondering how you and your wife are doing? If you have time could you just check in and let us know how you are? We are thinking of you! Hugs! Katherine
Hi @katemn , I have seen my new family doctor and got a referal to infectious disease doctor in asheville , waitting for them to call with appointment and my wife goes to pulmonary doctor on december 28. Thanks for asking!!
@bruce668, Bruce, thank you for letting you know how you are doing! It sounds like you have things covered thank heavens! Continue to keep us posted .. you are in our thoughts! Happy Holidays to both of you! Hugs! Katherine
Thanks very much and lets hope all of us have some better days ahead. I would like to ask, for my first two years of this disease i thought i was litterally going to die. But now , i still have the fatigue , lots of sputum , my bones hurt , sometimes my skin hurts and i dont feel well most of the time but my breathing has gotten much better . why would my breathing get any better without treatment ?
@bruce668, Hello Bruce, gee I don't have a good answer for this .. can anyone jump in with any ideas? Hope someone has some thoughts! Just glad your breathing is better! Hugs! Katherine
Hi Bruce, I found that my breathing improved when my anxiety was better, and got worse when I was more anxious, dont know if this applies to you or not but I am so pleased for you that it is much better!
I feel that it has more to do with this disease because i had a couple lympnodes that were 1cm on its short axis and they have decreased in size but i still dont know why.
@bruce668, Bruce, I can only speak from my experience with my husband's leukemia CLL .. WHEN his CLL has been worse his lymph nodes get bigger .. when his CLL is better his lymph nodes get small .. so that leads me to believe that SOMETHING in your body is better that the lymph nodes are smaller. JUST my hypothesis .. and why you are breathing better .. your body/immune system is fighting it off better?! Hugs! Katherine
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Bruce, print out the information I've given you .. show it to your family doctor .. AND be your own best advocate today! Request that you be referred to an INFECTIOUS DISEASE DOCTOR .. they would be able to diagnose you if you do indeed have MAC. Good luck today .. keep us posted! Hugs! Katherine