Hi KWilbur, im new to the Mayo onlibn site and am also already feeling welconed and less panicked like you.

Sorry you are having to deal with this too. I have a left upper lobe cavitary lesion 2cm and my thoracic surgeon says if it doesnt decrease he wants surgical biopsy. I had a bronchial one but they couldnt get enough sample, its likely candida and bacteria. I sure hope yours gets smaller too. I know its hard waiting. My next stufy is in spring. Is your body feeling weak too? My best regards, Julie

@jewel8888 .. Julie Hello Julie, so glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! I wanted to let you know that KWilbur, Kathryn may not respond to you .. she temporarily went off our Forum due to some demands in her personal life. She and all of us must put our health/energy level first and foremost .. she is doing what is right for her at this time. I am hoping some of our community will jump in who also have some of your issues .. share hints and ideas!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey.Sending you both a Big Hug in this tough time. Katherine

This is a great example of how we help each other:Calling on all fellow travelers with this question:Anybody have some muscle soreness taking the medication(s)?  If so, did they change the treatment or simply watch, etc?  Looking forward to hearing the answer.Terry

I appreciate your reply and have had a chance to read much of the posts here. Very supportive and lnformative, all of which i needed.

I dont expect you to reply to all this, its probably to much info but im needing to vent it out....so thank you for listening in advance.

Ive had many complications since a neck fusion three yrs ago and my many doctors are having a difficult time putting accurate diagnosis/reason for this lesion. I have a question, with the pulmonologist, rheumatologist , and lung surgeon ive seen for a year......shouldnt ive had a sputnum test already? I had a bladder infection turn into sepsis, extremely feeble, new shrimp allergies, serious sinus infection, bacteria and fungal problens. Juggling this with psoriatic arthritis, RA, and other connective tissue disease its hard in me. In the autoimmune group a person mentioned amyloidisis for me to check into. Do you know if antobe here suffwrs this with lung problems.
Wishing you a good afternoon abd again thanks for your help.
Julie

@jewel8888, Julie, I don't know a thing about amyloidosis .. only about our disease. But if I was sitting in your shoes .. I would do the below with your Pulmonologist .. IF they are an INFECTIOUS DISEASE doctor .. ASK how many MAC/MAI patients they have treated in the past 12 months. If they are NOT knowledgeable about our disease .. you are wasting time/money/effort/pain. Get moving on FINDING the right Infectious Disease doctor .. start googling and asking questions! As @128128terry11t Terry on our Forum would tell you .. she has evolved from fearful to FEARLESS as a result of the support and help she has received from our wonderfully supportive community of people. You will/CAN also if you just keep putting one foot in front of the other .. educating yourself .. advocating for yourself .. AND not putting up with less than you deserve!

Julie, if it is only ONE thing you learn on our Forum is that YOU must be your OWN best advocate!! If I was sitting in your shoes I would go to your KNOWLEGEABLE Infectious Disease doctor AND REQUEST a sputum culture PLUS A "susceptibility panel". You MUST remember .. doctors are NOT gods .. YOU are the employer .. THEY are the employees! YOU must take care of your body .. no one ELSE is going to do it for you! See below.

IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on the antibiotic to tell EXACTLY what your MAC will respond to and WHICH of one of the few drugs that will work that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.

Julie, find that MAI/MAC answer. Knock that answer in or OUT. Then keep seeking your answers until you FIND your answer. Our bodies are complex .. but DO NOT become so focused on suggestions from Group/Forums that you run yourself ragged .. "become" every disease suggested by every person or that you read about. That will make you feel crazy! Be logical in your journey .. THEN seek out serenity and peace. This journey MUST be a serene one .. it is our LIFE .. we must make it as happy and serene EVERY step of the way as we possible can .. it is our ONLY life .. LIVE IT! Hope this helps just a little! Hugs to you! Katherine

Hi @jewel8888 so sorry you are having such a tough time, we all suffer from MAC?MAI lung problems here, its a shame they could not get a good sample from your bronch as thats how alot of us are diagnosed, a sputum sample may show something, I would think they would try it. Have they sorted your bladder infection and sepsis , sinus infection, bacteria and fungal problems yet?I hope you can get this sorted soon.

Thsnks Heathert,

Sepsis for me was last spring, following my previous extreme weakness symptoms. Fortunately they also did a chest xray or i wouldnt have known of the nodule. They placed me on antibiotic nitriforamin sp,?, and since have been on fungal meds, prednisone, amoxicillin, azithromycin, going in rounds as i get different symptons and infections.

Im seeing my rheumatologist in two weeks and he is sincere and will do anything i need as he he is upset lung doctors havent figured my problem.
The infornation i learned here so far will make a great impact in that appt. As we decide where to turn now. I have appts with my lung doctors this spring but will go ahead and call them regarding MAC/sptutnan testing.

The suggestions here are so appreciated, thank you. I do hope your feeling good today.
Julie

Hi @jewel8888
You can connect with other members who have amyloidosis in these discussions on Connect.
- Current diagnosis is Amyloidosis and multiple myeloma http://mayocl.in/2bAqF5j
- Diagnosed with AL Amyloidosis. What can I expect? http://mayocl.in/2bQSFQR

You can also learn more from this Connect webinar with Mayo Clinic experts "Amyloidosis – What Patients Need to Know" http://mayocl.in/2jG4XjX

oh my goodness, have any of the infections gone?

Heathert,
I wish i could say yes, but im going in circles. I met my rheunatologist a year ago. I moved to SC for better healthcare, He said "mam i feel so bad for you, we really can just make you comfortable". I knew there was more to my problen than arthritis and nerve pain, i progeessed to quicjly for that. He realized it too after i went to hospital and the lesion and infections kept.coming.

The sinus infection last month caused jaw pain, black eye, mouth Sore etc. Now i seem to feel as bad as i did in my gut again and the sweats.
I have choices to make because i keep going on and off methotrexate too which is really hard on me. Im 46 and have been on it since i was thirty.
I worked at NIH while in college so i know to come to a place like Mayo for help when everything else isnt working.
I'm alread on disability and my husband helps me so much. We take our dog Roxi to the beach when i can, thats always fun.
Sorry if im writing too much, its nice for you and the other members concern it feels good.
Julie