Discussions By Condition: Infectious diseases

MAC-do not have aids

Posted In: Infectious diseases 26 Replies
  • Posted By: Anonymous
  • April 24, 2006
  • 02:15 PM

i would love to hear from anyone who has MAC. i was diagnosed 2 yrs ago and am still going through medical therapy. i need some emotional support. i am 60 yrs old, white female.

Reply Flag this Discussion

26 Replies:

  • I have been recently diagnosed with MAC. Where do you live? I am 59, while female. Are you on the antibiotics?
    Anonymous 42789 Replies
    • August 16, 2006
    • 10:38 PM
    • 0
    Flag this Response
  • I was diagnosed in 2003, I am 46 years old. Last fall I started taking the antibiotics because my doctor said the bacteria was growing. I took the drugs for a few months...stomach cramps, diarea most always, tired and just miserable. I suffered and then I was told to quit taking them in Mar until after I saw the doctor again. However, I had to postpone my appt and then the doc went on vacation so it was actually 2 months before I saw him. I took an exray and it was worse so he put me back on the medicine. This time the rifamprin made me so sick with flu like symptons I had to go to the emergency room. It just wasn't working, he changed meds, that did not work. Now I am going to take an eye test and try this other drug.....sometimes I just get depressed because I am tired of being tired and sick. I have asked my doc for a referral for a 2d opion but will still go get an eye exam and start this other medication. I just don't want this disease to get out of hand.....I feel my husband gets tired of me being sick and tired also. Would you happen to have any advice for something that works for you that maybe I could try?
    Anonymous 42789 Replies
    • August 26, 2006
    • 01:45 AM
    • 0
    Flag this Response
  • I have a NTM desease also..I was tested 4 times for aids..I was sick 4 years and told I was nuts ..I am 56 years old and am taking 2 antibiotics orally and 2 by IV everyday, have been for months now. I was told I have 2 of these bacterias. I went to National Jewish Hospital in Denver, thats the best place in the world to go for these NTMs.. The drugs are terrible on your body but what else can you do? I've had liver failure and antipylactic shock from clarithromycin. I can relate to everything you've been through..I wish you well..Post again if you need any info.
    cathln 6 Replies
    • January 11, 2007
    • 03:38 AM
    • 0
    Flag this Response
  • Im not sure if my first post went through or not but I'll try again..I've had NTM in my lungs for about 4 years.. take 2 oral antibiotics and 2 IV antibiotics everyday.. I was misdiagnosed for 3 years..Then I had lung surgery to remove what they thought was cancer..It was this bacteria, I had liver failure and antiphyactic shock from clarithromycin, I weighed 82 pounds last Jan. I was also tested for aids 4 times. I finally went to NATIONAL jewish Hospital in Denver, they will get you on the right track..Most drs won't work with them though..My new Dr won't, but Im going back in April anyway..If I can help somehow post again..I also am a female, Im 56, and have a small frame.. Most people with this are female, middle aged or so and of small stature. I do wish you well.
    cathln 6 Replies
    • January 11, 2007
    • 03:51 AM
    • 0
    Flag this Response
  • Forgive me , I dont know what those letters stand for. But I have a bacteria problem too. I am tired and lethargic and last year after being exposed to Love Birds that had a bacteria problem. Lime green Poop is the symptom, when a bird has sitosis(wrong spell) and ever since then I have all kinds of problems, immune, itching, fatigue, and sometimes headaches.The only thing that keeps me going is grapefruitseed extract. this kills bacteria including candidas. But sometimes I forget to take it.Maybe this will help all of you. Antibiotics are becoming less effective and things are getting out of hand on the bacteria front. clorox bleach is also what I use to clean everything from clothes to carpets. Make sure you use dish soap instead of carpet shampoo, because most carpet shampoos contain amonia.May the Lord be with you and bless you.
    Anonymous 42789 Replies Flag this Response
  • I was tested for aids twice. I don't have avium. I have kansasii and abcsessus..I am in IV therapy along with 3 antibiotics I take by mouth. I have had surgery on my lung because of this terrible bacteria..It took idiot drs. 16 months to figure out what I had. Have you been seeing a dr? I didn't think you could get avium from birds, I thught it came from soiland water, although I might be wrong..You do have all the symptoms of mycrobacterium though..Please, let me know how you are doing and if you are under a drs care. I will pray for you too
    cathln 6 Replies Flag this Response
  • I am a 57 year old woman who has just been diagnosed with mycobacterium avium complex (MAC). I do not have aids. To date my symptoms have been a chronic cough, tiring faster than usual, and shortness of breath. The doctors want to start me on a group of antibiotics which I will have to take for 6 months to a year. After researching and reading these blogs, I am afraid the "cure" may be worse than the infection. Has anyone reading this been cured without major health problems due to the treatments. Any help would be appreciated. Michele
    michele418 3 Replies
    • October 1, 2007
    • 07:56 PM
    • 0
    Flag this Response
  • Has anyone tried Oriental Medicine and Chinese herbs to help with their symptoms? There are many strong antibacterial Chinese herbs (many pharma companies are trying to extract the properties of chinese herbs so they can manufacture drugs from them and make lots of $$). A NCCAOM certified practitioner will be able to make a diagnosis based on TCM (Traditional Chinese Medicine) principles, and prescribe effective herbal formulas. Something to think about. If you are going to take the antibiotic route (which I don't recommend, personally), then you MUST take a good quality probiotic with several strains of beneficial bacteria. Otherwise your immune system will be completely shot and secondary infections will surely arise. Best wishesDOM
    acuann 3080 Replies
    • October 2, 2007
    • 03:29 AM
    • 0
    Flag this Response
  • Thank you for the info. I will certainly research your ideas before making any decisions. Michele
    michele418 3 Replies
    • October 2, 2007
    • 00:53 PM
    • 0
    Flag this Response
  • My mother is 83 years old and is oxygen dependent due to COPD. She was recetnly informed she has MAC from a lung biopsy. She has begun the antibiotic treatment and is ready to up the dosage. She has some good days but pretty tired most of the time. Does anyone have information on the prognosis of this disease?
    Desertrat 4 Replies
    • October 28, 2007
    • 09:14 PM
    • 0
    Flag this Response
  • I have MAI or some call MAC. I'm 57 years old and originally went to the doctor because of a peristant cough and chest pains. They did a biopsy of the lung and found the infection. I began the antibiotics about a month ago, taking ethambutol, rifampin and clarithromycin. My doctor has me on a three days a week dosage rather than every day to minimize side effects. My main complaint is I'm tired all the time and my body aches. I also started experiencing leg cramps at night. My doctor believes that this infection can be cured if I take the antibiotics for 6 months to a year. I'm willing to give the antibiotics a chance because I felt so sick before the diagnosis, at least now I know what is wrong with me. I'm one of he lucky ones, though, so far no vomiting or major bouts of diarhea from the drugs. My advice make sure you find a pulmonary specialist who has treated this before in non-Aids patients. I don't know where you are from but my doctor is Dr. Adam Glassman in Englewood, NJ. He takes very seriously the oath to "first do no harm". Good luck and God bless. Michele
    michele418 3 Replies
    • October 29, 2007
    • 00:26 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Thank you for the information. My mother lives in Southern California all her life. She started Azithromycin 3 weeks ago (250 mg) and just doubled the dose. If she tolerates this well she will start with the other drugs in a month. I cannot find any information regarding what to expect next with her. Her lungs are already compromised with the COPD and she is a heart patient.
    Desertrat 4 Replies
    • October 30, 2007
    • 02:42 PM
    • 0
    Flag this Response
  • Wow my case is so different. I was 19 years old (20 now) and I just had 2 swelled lymph nodes that were a little bigger than golf balls. The doctors finally took it out and found that it was MAC. I was tested for AIDs which was negative thank heavens and was put on Rifampin, Ethambutol and Clarithromycin (sp) last February but only 2 months into it I became pregnant so I had to stop taking the Rifampin and switched from Clarithromycin to Azithromycin. And then in July I was cleared of it and got to stop taking everything.
    Anonymous 42789 Replies
    • November 19, 2007
    • 05:33 AM
    • 0
    Flag this Response
  • Thank you for your reply and information. I believe that the BIG difference is in age; my mother is 84 and has severely compromised lungs that include COPF, CORD, asthma, etc. along with a heart condition. She increased her Azithromycin to 500 mg but could not tolerate it. Her pulmonary doctor took her off all antibiotics for a month. I really would like to know what to expect next with her and this condition. I am very happy you have been cured and that is encouraging. BTW.... by my calculations you whould be having a baby soon.
    Desertrat 4 Replies
    • November 20, 2007
    • 02:55 AM
    • 0
    Flag this Response
  • Yes! I'm due in 2 weeks! Hopefully she's out soon!
    Anonymous 42789 Replies
    • November 20, 2007
    • 02:57 PM
    • 0
    Flag this Response
  • Thank you for your reply and information. I believe that the BIG difference is in age; my mother is 84 and has severely compromised lungs that include COPF, CORD, asthma, etc. along with a heart condition. She increased her Azithromycin to 500 mg but could not tolerate it. Her pulmonary doctor took her off all antibiotics for a month. I really would like to know what to expect next with her and this condition. I am very happy you have been cured and that is encouraging. BTW.... by my calculations you whould be having a baby soon. Please have your mom consider trying acupuncture to help her. It is fantastic for Lung disorders, including COPD, asthma, emphysema, and others. Acupuncture can really make a difference - it works! Best wishesDOM
    acuann 3080 Replies
    • November 20, 2007
    • 07:17 PM
    • 0
    Flag this Response
  • My house mate was recently diagnosed with Mycobacterium Avium. He was in great health before getting sick. We had to insist on sputum cultures and x-rays in order to get him properly diagnosed despite his having all classic symptoms of the disease. His symptoms have resolved completely without treatment. I have also had a persistent cough with chest pains but no other symptoms and am wondering if I should be tested. I suspect that the source of contamination is the water since where I live in Upcountry Maui the water is surface water, highly acidic with much sediment. Avium is resistant to chlorine which will cause it to proliferate in the void after other germs are killed off. We also have a long distribution system which seems to make a difference because of the biofilm on the pipes. There is a lot of cattle in the area that frequently break the water lines that run on the surface, and from what I have seen the State Health Department does not seem to check when cattle get sick and die out here. The Water Department has refused to come out and check for Avium. So I have decided to move since no one seems willing to check for higher than normal levels of Avium that can cause sickness in a healthy person who should otherwise be low risk. I would think it would be considered a public health threat and they would want to get to the bottom of it. I do know that you need to reduce the exposure in order to get well.
    Anonymous 42789 Replies
    • August 29, 2008
    • 07:55 AM
    • 0
    Flag this Response
  • OMG.... I have read all the post and i am so scared... I have a 2 year old son who we have been told has MAC. He is on a 3 antibiotic drug therepy pluse a few others and has been for about 16 months. The mass in his chest has not gotten any smaller. we go to childerens hospital about every 3 months for test and updates. nothing has changed so we are going to go the National jewish hospital in denver, We are so scared... I can only hope hope hope for GOOD news! He goes to the eye doctor often and has blood work done atleast once a month, But we live at the doctors.... If there is any hope or if anyone has any info. to help please HELP!!!! Thank you. Hope in my HEART for every one!
    Anonymous 42789 Replies Flag this Response
  • What are 5 different types of lifting aids used in the workplace?I need 5 types of equipment or aids used for lifting in the workplace. Some can be for Aged Care use e.g lifting patients, and some can be for just lifting heavy crates and things like that. Any help is much appreciated!
    soniyali 1 Replies
    • September 23, 2009
    • 05:17 AM
    • 0
    Flag this Response
  • I have MAC isolated in my lymph node. It became very swollen so it was serigicaly removed. I've been on Biaxin and Aposulfatrim (I think). I've been on this medication for 3 months and I think it is just now bringing down the infection. I have no idea how I got this. Otherwise I'm pretty healthy. AH in Canada
    Anonymous 42789 Replies
    • November 25, 2010
    • 06:14 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.