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

@windwalker Terri " I adhere to a healthy lifestyle, exercise, pay attention to nutrition, don't stress, follow doctor's treatment plan to a
tee. Here lately, I do not even think about MAC. I live like I am perfectly fine." .. LOVE IT! Hugs! Katherine

@windwalker, Terri, thanks! So as with the MAC meds .. with Tobi .. if you stick with it .. there is light at the end of the tunnel with the Pseudomonas treatment. Hugs! Katherine

I've been pushing all my docs to do more re: research. EX: my Pulmo stated that there's adequate research taking place...I responded that I've his position to be not only untrue given no new drugs or inhaled antibiotics have been devised in almost 20 years, but what's being done is insufficient - that I'm actually quite disappointed with the lack of urgency around the infection. He was surprised, but now he knows how one patient feels

very true @boomerexpert

@heathert, Heather and All, the TOTAL credit goes NOT to me .. but to Mayo Clinic who hired Colleen Young and began Mayo Clinic Connect. We are just this wonderful little corner of this world .. if you REALLY want to be impressed .. take a look : https://connect.mayoclinic.org/groups/ . WOW! Impressive!

Everywhere I go I talk about this wonderful opportunity for people in distress to share what WE have/share on our MAC Forum! Truthfully I don't pretend that ALL the Forums are QUITE as wonderful as ours .. BUT of course I am speaking as a Mama Bear proud of her Cubs! BUT there is a place on Mayo Clinic Connect for nearly every health issue AND Caregivers to find shelter in the storm .. to find support/hints/help for their particular issue. It is just that our particular MAC Forum is evidently the oldest and most active (and of course in my opinion .. the smartest .. prettiest .. nicest and most talented!) of all the Forums!

But you would be doing a service if you do take a look/familiarize yourself with https://connect.mayoclinic.org/groups/ .. and then shout to the rooftops to anyone you talk to .. tell them just to google: Mayo Clinic Connect .. they can then find a group that could be a lifesaver for them/a friend/a family member .. just as it has been for us! Do them a good turn! Truthfully I kind of embarrassed my husband a while back in a restaurant! As I passed by a table on the way to the restroom .. I saw a woman in her late 40's with an oxygen tank. To make a long story SHORT .. I connected her to Mayo Clinic Connect .. she was VERY grateful. WHY? Because in our lives we have people who love us .. BUT they do NOT walk our walk .. ONLY people on our Forum WALK OUR WALK. It helps SO much to reach out to people who really understand.

So even if it is NOT an oxygen tank .. I just did the same thing with a heart patient .. health issues are basically all the same .. we all have the same pain. So do reach out to others .. be it what ever part of the body. Hope this helps us help others! Hugs to all! Katherine

My mom's Dr. Is seriously good for nothing. I called and he always has his nurse call and say oh go to the ER. I finally had to tell the just if the Dr was an idiot. Or if he even knows who my mom is and reviews her chart before calling me. It's the rifampin that makes her sick and it needs to be replaced. So now she said shell talk to the Dr and see what she can do. Meanwhile I called Loyola here in Chicago and Dr. James cook specializes in Mac and can see her but not until July. So would you or anyone know Incase her current Dr. Doesn't want to replace the rifampin if she can just keep taking the other 2 antibiotics and no rifampin or other until she gets an appt with Dr James cook in July. The Mayo Dr. You mentioned you saw recommended him when I emailed him before.

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

@ilgrp4e .. Carmen, Rifampin frequently creates issues .. exactly WHICH antibiotics is she taking?? Below is what I show as recommended as "Standard". Do you see and 'ALTERNATE"?? Hope some of this helps! Hugs! Katherine

From my File Cabinet:
ANTIBIOTIC ..STANDARD TREATMENT Standard treatment of MAC recommended by the American Thoracic Society (ATS) is a combination of 3 or 4 drugs approved by the Food and Drug Administration (FDA). The drugs include:
Clarithromycin (Biaxin) or Azithromycin (Zithromax)
Rifampin (Rifadin) or Rifabutin (Mycobutin) + Ethambutol (Myambutol)
Streptomycin (Strep) or Amikacin (Amikin)
The first three drugs are pills/capsules and may be given daily or three times weekly (Monday-Wednesday-Friday)

. While taking these medicines, routine laboratory tests to check kidneys and liver along with a complete blood count (CBC) should be performed, at least routinely for the first six months. Patients who fail therapy after taking the 3 standard medicines (clarithromycin/azithromycin, rifampin/rifabutin, and ethambutol) are usually required to take additional medicines (such as injectables or “shots”) which may be effective. For extensive or severe disease, or disease that has failed therapy, the injectables streptomycin or amikacin are often added for the first 2 to 4 months of therapy.

ALSO DID YOU TRY THIS MED SCHEDULING?
SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut - the antibiotics wreak havoc with the gut. This can help with nausea - I take my probiotic with breakfast or lunch - do not take it late in the day. I use Ultra Jarro-Dophilus - 50 billion per capsule - will find in the frig at any health food store - I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts - they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

So sorry to hear all your mom is going through. My ID dr told me I had to take all 3 antibotics/ day or don't take any (like if I had a procedure). Yet in October (my MAC cultures were clear) when we discovered the ethambutol was giving me a rash, they had me stop that drug and keep going with rifampin and azythromycin (sp?). They told me that the MAC was so slow growing they were okay waiting for a month or two. I'm guessing this was because my cultures were negative. They sent me to an allergist to see if I could be desentatize to ethambutol, which I was able to be and went back on it jan 30th, along with the oyher 2 drugs I never stopped. When I saw an ID dr at mayo he said there were other drugs to be tried if I couldn't be desentatized, but he didn't indicate if it was drug for drug or the whole treatment of drugs together. Hope someone else has a better answer for you. One thing I would say is to call the dr back that you have an appt with in july and see if you can be put on a cancel list. Never hurts to ask! Best wishes.

<br><br><br><br><br><br><br><br>It is technically not a bacterium, that is the loophole they are using, it is a mycobacterium. Just like they can loophole mycoplasma. Seems like we might fit<br> into “orphan diseases” category.<br> <br><br><br>