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

Happy thanksgiving to all!

And to all....a deep breath!

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, and anyone else I forgot to make note of!

I try really hard to keep the information on our MAC Forum accurate .. so when in doubt I go to “Mecca”! Dr. Timothy Aksamit at Mayo Clinic, Rochester MN speaks nationally and internationally on our disease .. an internationally recognized expert on MAC in other words! So below is a message exchange between the two of us.

Mine to Dr. A;
Dr. Aksamit, we BOTH have a responsibility to the Mayo Clinic Connect Forum on MAC .. that I was asked by Mayo Clinic to moderate .. so we have a responsibility to make sure that the information provided on it is accurate.

PROBLEM: On my Forum it was posted “stated unequivocally that sputum tests are less than accurate, and recommends a bronchoscopy, period. He said he would never do or rely on sputum sampling for a dx - an accurate dx... Wanted you to know.”

MY PROBLEM: You as my doctor have ALWAYS relied on sputum cultures .. and I have always trusted your judgement. NOW it is being inferred that YOU are incorrect in your choices. Frankly it ticks me off as I have stressed that you have guided me with sputum cultures. SO .. what is correct? Do I need to correct myself and say bronchoscopies are the preferred method?? Please let me know ASAP .. because the above information has been posted to my Forum .. and I hate to lead people astray! Best regards! Katherine

Dr. A response to me:
Dear Katherine, There is no information that bronchoscopy is better than sputum collections for assessment of and following NTM lung disease. In patients who do not produce any sputum we often will do bronchoscopy. It is my opinion that serial sputum collections are the gold standard if available and that bronchoscopy is considered if patients are not producing any sputum, equivocal sputum results are noted, or other diagnoses other than NTM are being considered. Hope this helps. Please let me know if additional comments or questions.
Dr. A

Dear All,
Hope your Thanksgiving had you counting your "gratitudes" .. whatever "gratitudes" you have in your life! If in life we keep in mind our gratitudes .. indeed our lives will be brighter .. happier and certainly more serene. Because no matter what is happening in our lives .. surely there is another who has it tougher .. AND in our lives I'll bet we had a moment of "sunshine"! Someone smiled at us today .. someone had a kind word .. the sun DID shine today .. whatever that gratitude was today .. relish it and be grateful! Today WILL be a good day! Hugs to all! Katherine

Thank you so much!!❤️

Heather, with the Holidays .. I just had time to read this article .. REALLY interesting! Thanks for posing it!

Especially the part:
"Investing in an antibiotic firm can be a tough sell: To keep resistance levels down and maintain effectiveness, doctors often hold new drugs in reserve and use them only when needed and with limited patient populations. Companies support such good antibiotic stewardship, but they lament its business impact. “Uniquely among therapeutic categories, the better your drug is, the less it is going to be used,” Melinta’s Sun says. “And that is not a good investment thesis.”

I decided to comment the below:
I moderate a Forum for MAI/MAC .. MYCOBACTERIUM AVIUM INTRACELLUCARE COMPLEX for Mayo Clinic .. it is called Mayo Clinic Connect. You can see just how active AND how desperate people are for new antibiotic to help this disease at: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=17

I as an example took 4-5 antibiotics for 30 months in an attempt to stabilize this disease. WHY .. because the industry has NOT created more effective antibiotics for this VERY resistant disease. I do not think the drug industry realizes just how many of us are out here suffering .. I know they see only the dollar signs .. BUT the sheer numbers are rapidly increasing in this disease. PLEASE take a good look at the numbers and create a new antibiotic that is more effective for MAI/MAC!

Hope others on our Forum read this interesting article AND type in a comment .. the more the merrier! Hugs to all! Katherine

Yes I found it extremely interesting and Im glad you read it, the more we can get the MAC message out there the better, and I take every opportunity. We need to get these new drugs tested on MAC somehow, Maby we need to target a research lab mentioned and suggest it to them, there were many mentioned, if we chose one each, we could get somewhere. We have the cystic fibrosis and HIV communities with us and it would also help the TB community so together we are a big group. Together we can make a difference.

Heather, if you do the research on which lab you think may be the most likely to respond .. I would be willing to post it on our Forum and see if our group will try to individually contact them. Let us know. Thanks for your help! Katherine

I too placed a comment - looks like about an hour after Kate! Here's mine:
"NTM's are a fast growing scurge with no cure given use of only old generation antibiotics that offer minimal effect. Add to that the treatment for many is worse than the infection (since a minimum of 3 extremely strong antiobotics are used - killing everything in sight except the mycobacteria, the result is nausea, overwhelming fatigue, GERD, etc. with little impact on the target).
If the research community waits much longer to tackle this potential health crisis (given no reporting of infection required, it is believed to be more far-reaching than current stats indicate - and more mycobacteria are becoming resistant to the old-school antibiotics), you will be far behind the curve, unable to catch up.
Tackle this now, while your results can still be meaningful."

Thanks, maby try writing to a few would be our best option.