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

@windwalker Terri, this is SO confusing! Not that long ago I thought they were telling us a higher temp would would create RESISTANT mycobacterium!! Anyone remember that?? " They suggested turning the hot water tank temp up to at least 120 degrees
or higher." Katherine

I thought there was only one drug cocktail that works, Rifabutin, Azithromyacin and Ethanbutol. Are these 2 that you are taking for the MAC? I wonder if they are easier on your system. i have to take 6 pills a day. The infectious disease specialist at Mass. General said she wants me on them everyday! I know that would kill me. I'm going to ask about those

@unicorn .. Christa The standard treatment for MAC IS the "Big 3" .. PLEASE keep in mind .. the Members on our wonderful supportive community are NOT doctors .. are ONLY speaking from their own personal experience .. you MUST listen to your OWN Infectious Disease doctor .. EDUCATE yourself .. advocate for yourself .. BUT form your OWN decisions based on INFORMED educated information .. we are NOT doctors .. just trying to support you. Sending you a Big Hug! 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.

**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack
ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.
BEST Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel "lousy" the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!
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
OR @lindam272,Linda The Rifampin gives me the most trouble of all the meds. I take 2 Rifampin and a Digestive Advantage probiotic all at once with a full bottle of water when I first get up in the morning. By the time I do my breathing treatment and get ready for my day, an hour has gone by and I have a light breakfast. I was taking the Zithromyacin with breakfast but it was giving me heartburn, so I pushed it out another hour which has helped. I take the Rifampin between 6:30 - 7 a.m., the Zithromyacin at 9a.m. and 3 Ethambutol between noon and 1:00 when I have lunch. What I like about the way I'm taking these meds, is that I'm done by noon or 1:00. I can then take my vitamins and other supplements with dinner which is a good 4 - 6 hours after my last MAC med.

GOOD INFO: http://maclungdisease.org/frequently-asked-questions https://www.ntminfo.org/faq/glossary
GOOD INFO: journal article led by Mayo Clinic's Dr. Timothy R. Aksamit. http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext

I understand that Katherine, been battling this for awhile, but It's good to know what works for others. The big 3 are not really an option for me anymore for any length of time. I need to find alternatives, maybe even experimental.

Hello Katherine.

No one is saying that 3 consecutive sputum tests are not the way to start. That is how it is done.

“There definitely are times when further means are necessary for diagnosis such as a bronchoscopy, etc.”

There sure are. What about when the patient cannot produce sputum?

Also, just as an example, below is a study, a case series of 31 patients with mainly nodular bronchiectatic MAC disease, 45% of which needed bronchoscopy or lung biopsy for diagnosis because sputum cultures were nondiagnostic:

Chest. 1999 Apr;115(4):1033-40.
Mycobacterium avium-intracellulare pulmonary infection in HIV-negative patients without preexisting lung disease: diagnostic and management limitations.
Huang JH, Kao PN, Adi V, Ruoss SJ.

Abstract
STUDY OBJECTIVES:
To review the experience of an outpatient pulmonary clinic with Mycobacterium avium-intracellulare (MAI) pulmonary disease in the HIV-negative population without preexisting lung disease.
DESIGN:
Retrospective clinical series.
SETTING:
University medical center.
PATIENTS:
The clinic charts of all patients who fulfilled the current American Thoracic Society criteria for MAI pulmonary infection and who had no preexisting lung disease or immunosuppression were reviewed.
MEASUREMENTS AND RESULTS:
Of 31 patients identified, 94% were female, 90% were white, and the median age at diagnosis was 63 years. The median time interval from symptom onset to diagnosis was 10 months. Bronchiectasis or small nodules without predilection for any lobe was found in 93%. Bronchoscopy or open lung biopsy for diagnosis was required in 45% because of nondiagnostic sputum cultures. At > or = 12 months, 50% failed therapy, 86% continued to be symptomatic, and 58% did not tolerate their initial multidrug regimen.
CONCLUSIONS:
These results emphasize the observed chronic nature of MAI pulmonary disease in this population, both before diagnosis and despite therapy. The sensitivity of sputum culture in this population is low, so an aggressive diagnostic approach, including bronchoscopy, should be considered if sputum cultures are negative. Current treatments are suboptimal because of poor drug tolerance and significant failure rates. Last, the preponderance of disease in older white women argues for a genetic or acquired immune deficiency to explain disease susceptibility.

Hello @internalmeddoc, we on the Mayo Clinic Connect are VERY grateful for any/EVERY research for our shared MAI/MAC and/or Bronchiectasis diseases. We have been VERY aware of our essential "orphan" status in the medical community .. so don't get me wrong .. if you come up with any medically accepted research .. we will be the FIRST to applaud you!

My only concern is that any newcomer to our Forum NOT consider a Bronchoscopy the first step on the journey toward diagnosis. Yes, it IS a step if they are unable to produce sputum with via: (SALINE SPUTUM CULTURE PRODUCTION IN HEALTH CARE SETTING
https://www.nationaljewish.org/programs/tests/sputum-induction/ ). Certainly THEN other methods should be considered. So your thoughts "The sensitivity of sputum culture in this population is low, so an aggressive diagnostic approach, including bronchoscopy, should be considered if sputum cultures are negative. " I consider are in order .. IF sputum production is NOT possible .. which has been true for some of our Members.

BUT UNNECESSARY Bronchoscopies have ALSO been ordered by questionable doctors not knowledgeable about our MAC disease! By one of our Members today "Thank you for saying that Katherine. I was told by my Mayo Clinic Dr that a bronchoscopy I had by a local Dr several years back was an unnecessary procedure, that all I needed to have done was a sputum culture.

SO @internalmeddoc .. PLEASE do continue your research .. we NEED further research on MAC!

But as I requested .. where DO you work .. do your research? You did not answer my question .. that would validate your authenticity. Best regards, Katherine

@unicorn .. Christa .. only YOU can make your own medical decisions! Hugs! Katherine

I agree with all of your assessments. The NTM's (Nontubercular Mycobacteria) formerly called atypical tuberculosis and which include MAC/MAI are indeed a force to be reckoned with and yet like tuberculosis, are often ignored. I realized this during my tenure as an attending at major teaching hospitals for 15 years, and now as a researcher in this area, still do. Regarding your RA, you were so absolutely correct in questioning your Rheumatologist's use of immune suppressants and one cannot but be struck with the fact that the manufacturer's TV ads of such drugs to this day caution "Tell your doctor if you have ever had TB"....which is odd since how many patients are aware that they have TB or MAI/MAC (which is basically fowl tuberculosis)? But the deeper concern is that there are studies on Medline which question as to whether RA itself is not a mycobacterial disease to begin with. Thank you for sharing.

Windwalker.....120 degrees but according to Dr Joseph Falkingham the microbiologist who studies NTM and did research with water heaters....if 140 degrees...there was a SUPER strong NTM that developed that could live in that temperature so they opted to say 120 which killed regular NTM but did create superbug ones. He suggested emptying water heater every 6 months if I recall.
His presentation was from 2016 NTM workshop at NJH and was posted in those videos. Tdrell

Katemn...your memory is correct...I just did a reply re NOT to use 140degrees in water heater. Dr Joseph Falkingham the microbiologist did lots of research in this area.tdrell