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

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

Last year, after being diagnosed with MAC, I was on oxygen for a while. I had a trip planned to Ireland. At the time of the trip I was off O2. My doctor was concerned about the flight but did not want me to cancel the trip. He recommended that I buy a pulse oxycimeter and carry a portable O2 machine with me. I did this and made the trip just fine. I only needed O2 when I got up and walked. Due to the altitude I did get short of breath on exertion. My doctor did not want me to let this disease control my life.

@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.

@laneyk, Elaine, this is GREAT advice!! I think it would be just wonderful if Pamela checked with her Pulmonologist .. found that with purchasing a pulse oximeter and carry a portable O2 machine .. would work! Problem solved! Thanks for jumping in! Hugs! Katherine

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

Thank you Linda...I have another question - for anyone who has been diagnosed with MAC and bronchiectasis, who has gone through the 18 months of treatment and has been found to be free of MAC after the treatment:   was your lung function test BETTER after the treatment?  Did you find that you had better lung capacity after the treatment?  Did you get less breathless?  I ask because I still have 4 more months to go before I come to the end of the 18 month treatment and my hope is that at some point maybe my lungs will not react so negatively in the high altitude.  Maybe this is wishful thinking.  I know that my bronchiectasis can not be reversed, but once the MAC is gone from my lungs, have people found they just breathe better and can move or do a fast walk without getting winded?    Pamela   

@pamelasc1 Pamela, one think to keep in mind is that we are not ' free of MAC after the treatment' .. we can become "stable" but the mycobacterium is still in our lungs .. just not multiplying/colonizing. For me .. my lung capacity was similar after treatment ended .. I am not a doctor but any damage to our lungs going INTO antibiotic treatment is NOT going to be magically healed by the antibiotic treatment. The only thing that will happen to our lungs with the treatment is the mycobacterium will be brought under control "stabilized". If our lungs were scarred/damaged PRIOR to treatment .. unfortunately .. the are STILL going to be scarred/damaged to the SAME degree AFTER treatment.

Unfortunately since May 2014 .. after I became "stable' after antibiotic treatment ended.. I have found my lung capacity slightly lowered .. who knows if it is the Bronchiectasis that we are left with .. or just merely the aging process. That is why it is so important to exercise so it can strengthen our lungs to the greatest capacity. I know this is not good news but I hope it is helpful.Katherine

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