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

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

tdrell | @tdrell | Apr 3, 2017

In reply to @katemn "@irene5, Irene, you are a sweetie for jumping in to help @merilee, .. I KNEW I..." + (show)

KayS .....have a wonderful wonderful trip! Terrid

Katherine, Alumni Mentor | @katemn | Apr 3, 2017

In reply to @katemn "Need lots of help Posted by @shiell in MAC & Bronchiectasis, 1 hour ago I introduced..." + (show)

@luvocean .. Connie your reaction .. trouble breathing sound big time! Definitely serious! Thanks for the info! Hugs! Katherine

Katherine, Alumni Mentor | @katemn | Apr 3, 2017

@jewel8888, 2 minutes ago
Your reply means so much. As i replied above im hoping to receive antibiotics and see if they continue to make ne feel better. I'm glad the decisions are in our hands! My best wishes you continue to feel better.
Julie ,⚘
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
@jewel8888 Julie, not sure HOW this is happening .. BUT you have said you WANT to be posting on the MAIN MAC page .. BUT the above post AGAIN went to the wrong page. I copy/pasted/reposted it again to the CORRECT https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=33#post-256426 PAGE. You might want to see how you are posting .. reply to THIS message by going to the BOTTOM of the message .. hit "VIEW & REPLY" .. it will take a few seconds for it to cycle/get to the correct posting because our Forum has so many messages on it .. but give it time .. and MAGIC .. you will be on the MAIN MAC Forum and will be able to post/reply there. Hugs to you! Katherine

boomerexpert | @boomerexpert | Apr 4, 2017

In reply to @katemn "Wed, Mar 15 at 2:14pm CDT Hi there, im new to this groip. Last year i..." + (show)

@katemn

Wed, Mar 15 at 2:14pm CDT
Hi there, im new to this groip. Last year i had a 3 month review for an upper left lobe cavitary lesion. Bronchospy couldn't reveal any information, the lesion isi5n difficult spot to get enough sample. Three months ago thr next CT scan revealed the size was the same but the wall thickness is a bit smaller than before. My next CT is soon and i want to be prepared with questions but dont know where to begin. I have RA and psoriatic arthritis, and also suffered a fall before all this started. Please let me know if you have any suggestions....i see the cardio/thoracic surgeon in a couple weeks and he said if not smaller they want to get me in surgery....thank you

, Thu, Mar 16 at 1:03pm CDT
Thank you everone so much. I see my rheumatologist tomorrow and ct scan scheduled on Tuesday. I had been participating in the MAC support group several months ago but a dying phone kept me off for a while. The info everyone has given me really helps.
I am a little concerned, still need a sputum test and did have a broncoscopy last summer but the surgeeon i was later refered to said he couldnt rule out cancer, but we will review it and make decision in April. What i dont understand is this all started at ladt year same time i developed a uti which caused sepsis as it went into bladder infection (more than 4 baterium found in labwork). It kind of sounds like i should have been given long term meds from what i see in the responses. Ive had severe weakness before and after the chest xray. The pulmonologist i saw who did my broncoscopy didnt know what to do so at least he moved me to this surgeon for another opinion. Being immunocompromised already has helped to confuse things, and im certain an open biopsy is not something ill decide lightly. Im off to review the links you offered Kate. Julie8888

Thu, Mar 23 at 2:22pm CDT
Thank you again Katherine. I will keep everyone updated about my April 4th visit with CARDIO/THORacic surgeon on April 4. It was difficult getting the ct scan, i wasnt feeling well from a hip/bursitis injection last Friday, where i had an allergy to it. I experienced extreme itching, cortisone flare, swelling along ankle and on top of right hand. Seems like ive gone down this journey with lung and increased inflammation, food allergies since i had several injections over a year ago. Its hard when so many things make it complicAted for doctors to diagnose and treat. Im picking up a short azithromyacin zpac today for new sinus infection. Im venting but know everyone understands.
Ill get the results tomorrow of ct scan and will definitely come here with the news. Is this thread in the mac group, i mzy have put it in wrong spot? Sincerely, jewel8888 julie

Posted by @jewel8888, 2 hours ago
I appreciate your checking on me!
I didn't know if our above posts could be moved to the MAC group or if i needed to start new thread
I go to Dr tomorrow, with report in hand. Its looking good with the lesion not increasing. It does say there is ground glass increasing bilaterally, likely from atelectasis and hypoventilation. Also that this is still of unknown origin....., neoplasric, infectious, inflammatory. Its hard trying to remember what to ask but i think with all I've learned from you and the group i will be ok. This surgeon is chief of the medical Univ. Of South Carolina.
Thank you. Again, i will make sure to share afterwards.
Julie
+++++++++++++++++++++++++++++++++++++++++++++++++

@jewel8888 Julie, I am answering you on the Main MAC Forum page .. that means now if you just hit the Reply button from now on it will take you back to the Main MAC Forum page where you wanted to be in the first place. I can't move your previous posts .. but have tried to copy/paste so Members can see your history. I am sorry I did not take care of this sooner .. but I was out with a family situation .. but now all your posts will be here!

Julie, let us know how your appointment goes .. AND go back to https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=33 and print out that "Questions to Ask Your Doctor" form that I gave you there .. change it as you need to .. give yourself spaces between the questions etc. That will give you some ideas of questions to ask! Good luck and keep us posted! Hugs! Katherine

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Insist that your pulmo/cardio and rheumy docs talk to each other...they simply won't unless you tell them to...

boomerexpert | @boomerexpert | Apr 4, 2017

In reply to @boomerexpert "@ilgrp4e there is an inhaled medication given when others aren't working properly: Amikacin - ask about..." + (show)

Tell Cook's office how dire the situation is - ask to be seen on an urgent basis

fransav | @fransav | Apr 4, 2017

I have MAI for a while & so was taken off my biological meds for my psoriatic arthritis. The Otezla I was given worked for 2 yrs, but isn't working anymore & my pain is unbearable. I'm considering going on the antibiotics for a year...Anyone out there with any advice?

Katherine, Alumni Mentor | @katemn | Apr 4, 2017

@fransav .. do you have a first name .. more personal. Oh @fransav, this must be just awful for you! PLEASE have your Infectious Disease doctor CALL and work WITH your doctor for your psoriatic arthritis! You CANNOT live with unbearable pain AND going on the meds without the two doctors working in tandem .. OR getting to a MAJOR medical facility that can help you work this out. From my File Cabinet two that you might consider are:

MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

** Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s

or JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional. FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH......for the first 50 years of their existence....1898 til 1958 they did not charge clients..I am on Medicare....they accepted it fully....3 months after my trip....l have yet to see a bill....they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true....but it is there to help people. l beg you to contact them to check

@fransav .. I hope some of the above helps you .. I am so glad you found us! Please read the past pages of our Forum .. you will learn a great deal about your MAC disease .. remember KNOWLEDGE IS POWER .. and please keep coming back with ANY questions you might have .. we will be here for you. AND PLEASE Members .. please jump in if you have any thoughts/hints/help on "taken off my biological meds for my psoriatic arthritis. The Otezla I was given worked for 2 yrs, but isn't working anymore & my pain is unbearable" .. she really needs our help! Hugs to all! Katherine

Katherine, Alumni Mentor | @katemn | Apr 4, 2017

@fransav .. I went hunting .. I do NOT know if this related .. I am NOT a doctor .. but you said you have "psoriatic arthritis" AND @oldkarl MENTIONED "both psoriatic and rheumatoid arthritis" .. why don't you message @oldkarl and talk to her about her below post? Can't hurt? Hope this helps! Hugs! Katherine

Posted by @oldkarl, Sat, Mar 25 at 10:24am CDT
With both psoriatic and rheumatoid arthritis, and lung lesions, you are in the zone where it is realistic to have yourself checked for some form of amyloidosis. There are a great many signs which relate to you, so the first step is a SERUM FreeLite(C) chain assay. Any top clinic can do it. Mayo, City of Hope, Brigham & Women's, etc. And do a 24-hour urine collection and protein measurement. If either of these shows ANYthing, have one of those top clinics start doing some testing, genetic and histological. But if the doctor you see is not experienced with amyloidosis (there are a thousand or so different mutations) find a doctor who is. Call the amyloidosis foundation or Mayo for a referral. And repeat things every few months. It has taken me two years to even find a doctor who could say the word properly. http://www.amyloidosis.org/

member | @member | Apr 5, 2017

This message has been removed as it contravened the Terms of Use https://connect.mayoclinic.org/terms-of-use/

Kay Strand | @kaystrand | Apr 5, 2017

In reply to @member "This message has been removed as it contravened the Terms of Use https://connect.mayoclinic.org/terms-of-use/" + (show)

@member that's amazing about the herbs. Did you take the meds and the herbs both? Do you have MAC or Bronchiecstasis? Do you take the big 3 or herbal or both for that?Thanks and so happy you're better...Kay S

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