This is a new forum for me, hope this is the correct procedure. I was wondering if anyone here is familiar with the NTM (non tuberculosis mycobacteria) MAC or MAI. I know it can be a side effect of AIDS but the type I'm looking for is not AIDS related. It is sometimes called Lady Windmere Syndrome after the Oscar Wilde play of the same name. It usually infects the lungs of thin framed older women who have a lowered immune system. Although it has been found in men too. It is not contagious through human contact, rather from air, soil, or water (either fresh or hot tubs). Anyone know what I'm trying to find?
The imput was appreciated greatly. It means a lot to know someone is paying attention. I have checked with the NJ in Denver also the Tyler Texas site. I just wondered if anyone had this condition too? Yes MAC and MAI are the same. There are also several other sub classes types of this. Thanks again
I have just been diagnosed with this condition. Have not started meds for it yet but am told will be 18-24 mos. on 3 antibiotics. I am 47 yrs. old , medium build. My history of health resulting in this diagnosis is rather lengthy but am hopeful this is right. Of course no one can tell me where or how i got it. I contracted Histoplasmosis without knowing how or when either but am told in my area everyone probably has it but takes right circumstances to trigger it, as with MAC.
Mycrobacterium other than TB " MOTT". There are many.
I was diagnosed with 2 different microbacterium in my lungs, Kansasii and Abcessus. I had been sick for years, no Dr. knew why. I am a small frame woman 54 yrs old.
I went to National Jewish in Denver 4 times. I was on 2 IV meds for 9 months, I did this at home myself. I was also on 3 drugs orally for 18 months.
The Kansaii is gone forever. The Abcessus is now dorment. Drs. waited almost a year before I was on right mix of drugs. National Jewish helped me so very much.
I live 2000 miles from Denver, but will go again if needed. They knew much much more than any dr. here, wheather pulmonary or infectious desease specialist.
with right drugs like rifampin, ethambutol, avolox, amakacin, and enipenum, all, or a mixture of them, you''ll get better. Good luck!
I was diagnosed with MAI when I was only 35 years old.
Female. Had been sick for years and put up with it as bad lungs since childhood. But 18 months on 3 antibiotics and I was a new person!!!! Went on to be lung infection free for over 4 years. It is rare to find it in somebody my age. I am now 47 and fitter than I have ever been.
Was diagnosed with MAI in October 2009. Started meds in January 2010. My biggest concern right now is whether or not to continue going to dirt tracks to watch my son race. Will all the dirt and dust that I breathe in all evening at the track make my condition worse? Was it what caused the infection to begin with? Still have many question. So torn as to what to do:-((. Any suggestions or advive would be greatly appreciated.
i have read that the NTM or non tuberculous mycobacteria are bacteria related to mycobacterium which causes tuberculosis(TB), but the drugs used for NTM are different from that of TB.The NTM''s are found in environmental(water,soil)so it is obvious that we can come in contact with them while inhaling dust or having a shower.They may inhabit the lungs and may not cause disease in all the individuals.
I've had ntm for ten and 1/2 years now ...no formal diagnosis. After initial antibiotics got rid of the fever, I've dealt with the cough, phlem (and sometimes blood) with many different holistic methods. At one point about 7 years ago, after hearing about m avium, I sugested to a pulmonory specialist that this might be what I had. He said something like everyone has that in their lungs and I probably had asthma. It wasn't until today that I went back to exploring that possibility, found some fantastic websites... some listed above and am now without a doubt that that is what I've been dealing with.
I rarely go to medical doctors. For one thing, no medical insurance, and secondly, the experiences I have had with most doctors leaves me with an opinion of the medical community best left unprinted. Still, I'm open to trying again with the new info, but am pretty learie (sp?) of the multiple antibiotics and their side effects. Have just recently started taking liquid clay and feel that it is helping. Also am planning (at some point) on writing a book. Please don't put me on any lists. I already have literally thousands of emails that will never be gotten to. Thanks. Sorry about being so long winded... just so happy to find this site and know that I'm not alone with this!
I was a runner and long distance biker. I am a thin 56 year old female. For a couple of years, I had fatigue and high fevers. but continued those activities. In January 2009, I began wheezing and was short of breath. I could not do any strenuous activities. After 3 MDs, I found an internist who recognized that I most likely had MAC. A broncscopy identified it. I was admitted to National Jewish and have been on daily Rifampin, Azithromycin and Ethamutol from 4/09 to present. In rare cases, the non-tuberculosis mycobacteria can cause inflammation and blockage in the coronary arteries. I experienced increased shortness of breath and 2 weeks ago, I had an angiogram, angioplasty and 3 stents placed in my coronary arteries.
I'm a 72 year old woman. Very active - work out 4-5 days a week. In 2004, after months of bronchitis & pneumonia I suffered a heart attack and was diagnosed with COPD (mild) as well. Entered a study for NTM and found I had the disease, but it was dormant. Prescribed the very expensive drugs listed in the post before more - decided not to take them - very toxic and my medicare insurance would not cover them. To evaluate my condition, they need sputum (which I am always unable to provide - I NEVER cough), so I just keep hoping the disease is still dormant. But I notice more shortness of breath recently. Has anyone out there had this disease without any sputum being present?
I realize this post is over a year old, but if you are still checking back: My mom has this condition and has never been able to generate enough sputum for the test! And - in the last 6 or so months she has developed shortness of breath as well as cardiac symptoms. She is a very tiny, very active 86 y/o who (prior to this diagnosis) enjoyed very good health all her life. She is also unable to gain or maintain her weight, in spite of eating over 1500 calories a day, and now has profound muscle wasting. Any ideas on keeping her afloat?
Hi in response to query, I can say by experience that lack of sputum does not mean that Mac is dormant. Although I have not had any sputum, the cat scans and Xrays taken during the first 6 months of 2010 showed continuous increase in my lungs of infiltrates consistent with Mac. I had a bronchoscopy in October 2010 which established that I have MAC. I started the medications in mid-November, 2010. The x-ray taken after one month showed no further progression. The x-ray taken after the second month showed marginal improvement.
I was diagnosed with MAI in 2000. I had NO symptoms at all, just went in for an annual PE and my internist ordered a routine chest x-ray. Two spots were seen on the x-ray so a CT scan was done. I was then referred to a pulmonologist who ordered a PET scan and he then performed a lung biopsy. The tissue was sent for testing and two weeks later, the pulmonologist saw me and said I had MAI. So there is a way to find out if you have this without providing sputum.
I also have MAI, and like yours, it was diagnosed from a lung biopsy. I just started the meds yesterday, and I'm wondering about side effects some of you may have experienced. I hurt all over today - unfortunately, to some extent that's usual for me. (I also have CVID.) Today seems much worse than usual, but I don't know if it's the meds or the fact that yesterday I was getting my classroom ready for the first day of school(step up on the chair to hang a poster, step down to the floor; repeat for about 10 posters.
I am guessing that when I was diagnosed, the American Thoracic Society guidelines were different - I was only on daily medication for six months and I don't remember having any significant side-effects from the medication - I don't know what CVID is but it seems that a lot of people with MAC have other medical problems as well.
You might want to look at the "NTM info & research" and the "MAC lung disease" websites and register to participate in their forums. There's a lot of information about things that people have found helpful -- for example, on the NTMir site, you might want to type "probiotics" on the search function and read the posts.
There is a lot of information out there and it can be overwhelming. So read a little every day and see if there is anything you want to try.
I have MAI and been on med's for over a year. They say I got it from doing yard work, that a sick bird pooped in my yard and I breathed it in. The med's are not working for me and am going to be scheduled for surgery. I think this is all so crazy and would love to talk to someone else who has gone thru this. I have nodules in my lung, the side effects from meds are not good.
You might want to check out the MAC lung disease forum and use the search function to look at posts from re: surgery. I'd also suggest you read the American Thoracic Society/Infectious Diseases Society of America's 2007 statement re: treatment of NTM diseases. It does emphasize that surgery be done at centers that specialize in the treatment/management of NTM infections.
After reading posts from last two years above, my thoughts on many of the issues and questions: I have NTM, I am 52 years old,I take three antibiotics, Rifampin, Azithromycin, Moxifloxacin. If you are not being treated by a doctor who has hundreds of patients, you most likely are not getting the best care. (no offense to any physicians) This is a disease that most doctors are not experienced in to knowledgeably and effectively treat, and since it is your lungs, I would seek out centers, as mentioned above such as Tyler Texas (if you can get in) National Jewish in Denver, or the NIH in Bethesda, MD. I go to the NIH and couldn't be happier with my care. It's also free if you are accepted into the study for Nontubercular mycobateria. YOu can call their recruitment number to try to find out how to get in the study (1-800-411-1222). I would also go to some of the websites mentioned above, www.ntminfo.org and sign up for the NTM Support forum. There are some very educated patients corresponding regularly on the site. Very helpful if you have questions, you will get responses quickly. www.maclungdisease.org, sign up and get on their "message board" a lot of good info there too. Good luck to everyone!