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chardonnay 04-21-2004 07:44 AM

MAC ?(Mycobaterium avium complex)
Anyone out there with MAC (severe bacterial lung infection)?? I understand the usual treatment is 3 antibiotics for a period of about 18 months which can cause severe intestinal distress and some bad permanent side effects. I'd sure appreciate hearing from someone who has MAC and what your experience has been while on the antibiotics and afterwards. Thanks! Peggy

sugzey 04-24-2004 04:13 AM

Re: MAC ?(Mycobaterium avium complex)
Yes, I have MAC. See the post on 2/26/04 and the response. I am the 64 year old woman in the response. I have been on the two medicines since last July. I am tolerating them fairly well. Sometimes I wonder if they are doing any good though. Your mouth isn't by any chance peeling inside is it? Mine was peeling inside before I started on the medicine and no one can determine what is causing it. I am just wondering if the MAC is causing it. Good luck with taking your medicine. How old are you?

chardonnay 04-28-2004 06:57 AM

Re: MAC ?(Mycobaterium avium complex)
Sugzey$, thank you for your reply. I am 66 and have never smoked. I'm not on the meds yet. I had a Bronchoscopy yesterday. My pulmonary specialist is absolutely certain I have MAC. After the cultures come back, in about four weeks, then he will prescribe the appropriate meds. I've heard there are many bad side effects from the meds and some people are not able to tolerate them. It was reassuring to hear you are doing so well other than the sores in your mouth which I'm sure are most unpleasant to deal with. I'd appreciate reconnecting with you in about two months. Okay? Thanks, Peggy.

sugzey 04-28-2004 03:00 PM

Re: MAC ?(Mycobaterium avium complex)
Hi Peggy,
I am sure you will do okay. I do remember that my Dr. was glad that I was taking a vitamin pill everyday. I guess they want us to be in pretty good shape before we start taking those strong pills. Visited my Dr. today. I see him every two months and have been since last July. Get my liver checked every two months also. He thinks he will be taking me off the pills in July. He thinks that if it hasn't done what it is supposed to do by then that it won't do any good to keep taking them. One of the pills I am on is Ethambutol which is a tuberculosis pill. I read on the internet this morning that one way you can tell if it is becoming toxic to your body and it is affecting your eyes is to look at the same blue object everyday and if it starts looking green then stop taking the pill and contact your doctor. My doctor said today that he had never had anyone become toxic to the pill and I haven't had any problems with my eyes but I do go to the eye doctor pretty often just to make sure. The mouth problem I am having is peeling inside my mouth and it is most obvious when I first get up in the mornings. The doctor doesn't think it is related to the MAC. I cannot figure out what is causing it. Drives me nuts! Again, good luck, and let me hear from you when you get on your medicines. Ann P.S. I have read that it is our age that most people are diagnosed with MAC and that most of them are women.

chardonnay 05-18-2004 04:50 PM

Re: MAC ?(Mycobaterium avium complex)
Hi Sugzey, I saw an infectious disease specialist and am now also on Ethambutol, Rifampin and Zithromax. I didn't ask before, did you/do you have shortness of breath with your MAC? I do. I've been on the meds for a week now. There are a few side effects so far but nothing I can't handle. Hope your mouth is cleared up and you are doing better. Peggy

sugzey 05-18-2004 05:34 PM

Re: MAC ?(Mycobaterium avium complex)
I also am going to an infectious disease doctor. I am still on the 2 meds...Biaxin and Ethambutol. Have been on them since last July. The Dr. mentioned taking me off them this July. I asked him why and he said that taking them longer is not better. The medicine wears out after awhile and quits doing its job. I think my Dr. thought that three of them would be too much. I have handled the two extremely well. Really haven't had any side effects. My Dr. thinks I might have gotten MAC because I have bronchieactisis in my lungs also which made a weak spot for the bacteria to get into. My mouth is still peeling inside. Can't figure out what is causing it. I was also just diagnosed with osteoporosis even though I take my calcium, walk about 2 miles a day and eat a lot of the right stuff..but I am considered a tall slender caucasian woman and that means I could get osteoporosis and also I got off my estrogen and progesterone which I should have never done. Taking Evista for that now. Oh well, we can't win for losing, can we? I do hope you do well taking your meds. Check in once in awhile and let me know how you are doing.

sugzey 05-18-2004 05:44 PM

Re: MAC ?(Mycobaterium avium complex)
Peggy, I forgot to answer your question about shortness of breath. Earlier on, I could tell that I was having a time walking up a small incline. I think I am a little better in that regard. If I hadn't been doing my fast walking all these years, I don't know what shape I would be in. I think that has kept my lungs strong. Ann

grammy1954 06-02-2004 07:42 PM

Re: MAC ?(Mycobaterium avium complex)
Yes, I have MAC. Finally got a definite diagnosis of this disease today after going to 3 Pulmonologists in the past 15 months. It has taken 15 months of suffering with pain, shortness of breathe, hoarseness, and exhaustion and going from one doc to another doc to finally find a doc who would listen to me about my health issues. I have had 6 CT scans and all have been abnormal and 14 or 15 chest xrays, 2 bronchosocopies, speach doctor, Gastroenterologist, numerous blood work, breathing tests, and I could go on and on on everything that I have been tested for. My pulmonologist finally got the results of my cultures back. Some of these cultures took 8 weeks to grow and get a definite diagnosis.

Since I had researched atypical mycobacterium before I got the definite diagnosis, I knew the hazards of taking these 3 or 4 antibiotics for this disease. I will be taking Ethambutol, Rifampin, & Zithromax. You are correct in stating that you have to be on these drugs anywhere from 6 months to 2 years and sometimes longer for this disease. I start all my antibiotics Friday. I will be taking a handful of these antibiotics a day. I am also being referred to an Infectious Disease Specialist, an Ophthalmologist(because these drugs can damage your vision), and also back to my Gastroenterologist for the extremely bad case of GERD which I have. My pulmonologist said I needed to see all these docs because they all have to work together to treat me because of the Terrible side effects that these 3 antibiotics could cause. I have to have blood work every 2 weeks for now so they can see the results and make sure my liver is not being damaged by these drugs.

I don't want to go overboard and type too big of response on this one post but if you reply to this I can tell you more of what my doctor told me and what to expect from these drugs that are used to treat MAC. I have a lot of faith in my pulmonologist and what she says and I am going to trust her on the type of treatment plan she has for me. I just hope these strong antibiotics does not go against me and cause other health issues.

sugzey 06-03-2004 04:19 PM

Re: MAC ?(Mycobaterium avium complex)
I know what you mean by saying you had all those tests, etc. I had all that done also. I decided I would go to a Dr. other than my regular Dr. I thought he was a lung Dr. but he isn't. He is very smart though because after I told him about my coughing at night mostly and coughing up a granular substance he decided to do the bronchoscopy and sent the cultures off which took a good long time to get the results back. After he got the results back they had discovered 3 bacteria in my lungs. He also discovered that I had bronchiectasis in my lungs. The infectious disease Dr. that he sent me to to get treatment said that I probably got MAC because of having the bronchiectasis which was a weak spot on the lung. When I lay down at night stuff starts coming up out of my lungs periodically until it all gets out. That was not happening until I started my meds. I don't much believe that I am going to be cured in one year. I started my meds last July so I am expecting the Dr. to tell me to quit taking the meds this coming July. He only gave me two medicines...Biaxin and Ethambutol. Maybe age has something to do with how many meds they give you. I will soon be 65.

Anyway, let me know how you feel when you start taking your meds. It is always interesting to hear from others with the same thing that you have. Good luck!

grammy1954 06-03-2004 06:34 PM

Re: MAC ?(Mycobaterium avium complex)
Hey Sugzey$,

Thanks for replying to my message. I got my prescriptions today and probably will start taking them Saturday. I am currently on Cipro for a bladder infection and the doctor wanted me to wait 1 day after I took all the Cipro before I start the "High Risk Drugs." I will be taking a total of 2250 mg. of antibiotics every day for 6 months to a couple of years. I see the Infectious Disease doctor in a few days so he will really determine the length I am to stay on these antibiotics. Hopefully, I can get this MAC under control and not have to take those drugs that long.

Have you had yeast infections from all these antibiotics? I worry about yeast and what this will do to my intestines. I am so bad about having side effects from drugs. As you probably know, Ethambutol and Rifampin have serious side effects. Any antibiotic used to treat MAC have serious side effects. I am 49 years old, however, I started having these problems when I was 48. I am more exhausted from trying to convince doctors and get them to realize that I was seriously sick than I am from the disease. I told my lung specialist that I had found out something from my illness and that was if a patient does not have a big mass, or a well known disease, then doctors can't diagnose a patient. I am so thankful though that I now having a very caring, kind, and nice doctor.

I agree with you it is nice to hear from other people who share your illness and know the things that these diseases do to your body. Thanks for asking me to post, I will definitely let you know how I do with the drugs.

sugzey 06-04-2004 02:10 AM

Re: MAC ?(Mycobaterium avium complex)
Wow! that is a lot of antibiotics. My Biaxin is only 1,000 milligrams daily. Ethambutol 1,200 milligrams daily. I wish they had given me the stronger dose to get rid of this mess. I wonder how you got the bacteria. From what I understand, the immune system has to be real low or you have to have a weak spot in the lungs like I have. I haven't had any trouble with yeast infection. When I first got on the medicine, I started eating a cup of yogurt everyday. I have kind of slacked off that but I still eat a cup a couple of times a week or so. No one told me to eat it. I have always heard that it is good for your stomach because of the active cultures in it. It wouldn't hurt to try it. I would try anything to keep from getting the yeast infection. Take care and keep in touch.

grammy1954 06-04-2004 10:15 AM

Re: MAC ?(Mycobaterium avium complex)
I eat yogurt everyday now but I also take probiotics in the form of Acidophilus. I am going to increase my intake of the acidophilus by a huge amount to try and prevent these antibiotics from tearing my stomach and intestines up. I had never had any lung problems except in the 80's I had pleurisy and pneumonia. I have not had a cold in over 15 years. I have been taking a handful of various vitamins for the last 25 years or so. So, I have always been pretty healthy up until these past 2 years. Most people can fight off mycobacterium, however, if your immune symstem is weak then you may be one of the few that the bacteria starts growing in and unfortunately we are part of those few. I am so dreading these antibiotics because I have a tendancy to be allergic to a lot of meds and have side effects from a lot of the drugs.
I was sitting in my recliner February 2003 then all at once I started having chest pains so bad I could not breathe. I thought I was having a pleurisy attack but after I went to the ER care center the chest xrays showed I had a mass in one area. That started the endless 15 months of doctors, xrays, ct scans, etc. Last year was the worst year of my life. I was soooooooo sick. I did not have any energy, I had shortness of breathe, and chest pains. Some days all I could do was sit or lie down. I did not have enough energy to walk across a room. I kept telling my first pulmonologist all of this and it was like he did not believe me. He ran several tests, did the broch, and took a culture and started treating me for tb even though I had negative results for TB. I waited 6 weeks for the results of the culture and then he told me the lab said the cultures died. He looked at me and said that between me and him he bet a lab technician broke the culture. I asked where that left me and he said you can get out of bed, can't you, I told him I always got out of bed. He then said come back in 4 months. Needless to say, that was the last I ever saw of him. I came home immediately and called another Pulmonologist and saw him. Well this pulmonologist was as bad as the first one. He ran a ct scan, bloodwork, and xrays and because he couldn't see anything but an irregular ct scan reading he told me to come back in 6 months. So, I suffered for 6 months until my next appointment.

Six months later we had new insurance and I could not go back the the 2nd quack. In Dec. I completely lost my voice and found myself another pulmonologist and now finally after several different specialists, I now have a diagnosis and treatment plans. Some Docs can be a pain but I feel lucky that I now have a female pulmonologist that has listened to me and immediatly started sending me to several specialists to make sure it was not some other disease than a lung disease. I told all 3 pulmonologist that I knew my body and there was something definitely wrong with me and it was not in my head and I dang sure did not like spending thousands of dollars on docs and tests and I knew my problem was in my lungs. Because all my chest xrays, except for the first 2 did not show anything wrong so all 3 docs kept ruling out my lungs.

Needless to say, I knew more about my body than all of the docs. I knew my illness was in my lungs. Sorry, I have written so much but I wanted you to know a little about the start of my disease.

sugzey 06-04-2004 04:40 PM

Re: MAC ?(Mycobaterium avium complex)
I could tell my regular Dr. thought I was a hypochondriac. I didn't tell him that I was going to ano***r Dr. to try to find out what was wrong with me. I think he was surprised when he was given *** results ** what ***y found wrong with me. I can remember a long time ago when my regular Dr. took an xray ** my lungs. He saw some white spots on my lungs but he never did pursue what was causing *** white spots. I guess MAC is so rare ***y just don't ever suspect anyone having it. My bouts ** coughing mainly at night and coughing up a granular substance and having to keep a cough drop in my mouth all night is why I kept on trying to find out *** problem. I knew it wasn't normal. I even took samples ** *** granular substance to *** hospital for ***m to check it out but ***y couldn't come up with anything except ***y thought it was mucous plugs. It was like little tiny pieces ** sand. *** infectious disease Dr. said it was one ** *** three bacteria ***y discovered. I have a problem with my voice once in awhile also. It's like I have to kind ** strain to talk. I have also been having stabbing pains in my chest for years. It doesn't happen too **ten, but when it does, it feels like someone is sticking a knife right in *** center ** my chest. It is such a hard hurt, I honestly feel like I am going to die. I don't know what causes that. No Dr. could ever answer that question when I would tell ***m about it. *** problem with Drs. is that ***y have too many patients and don't have time or take time to research what might be wrong with you. Sometime I will tell you about my sister who was diagnosed with leaking capillary syndome se****l years ago. That is a very rare disorder. Sounds like you are in pretty good health so I think you will handle *** drugs just fine. Let me hear from you.

chardonnay 06-07-2004 10:45 AM

Re: MAC ?(Mycobaterium avium complex)
Hi, it's Peggy again. Grammy, I have been on the three meds for one month now. I have some intestinal discomfort and tire easily, but other than that am doing well. I haven't been walking on my treadmill which I know I need to do, but just haven't quite felt up to it. I started out with 200MG Zithromax, 1200MG Ethambutol, and 600MG Rifampin daily. The Ethambutol has now been cut back to twice a day or 800 MG. I see my doctor in three weeks. I have been having blood work every three weeks. So far he hasn't said anything about checking my eyes but perhaps he will when he thinks it is necessary. He seems to know what he is about. Anyway, it looks like our treatment plan is very similar, at least to begin with.

I feel like the shortness of breath has gotten worse. Perhaps the heat and humidity of Florida has something to do with that. I am still able to play golf which I'm grateful for. However, I don't play nearly as much during the summer months.

Good luck to you!! Ann, I've got to look Biaxin up to see how that compares to what Grammy and I are taking. It would seem that after all this time, ten plus months of treatment, that you should be doing better.

Let's keep communicating. Peggy

chardonnay 06-07-2004 11:00 AM

Re: MAC ?(Mycobaterium avium complex)
Ann, I looked up Biaxin. The site I found talked about Biaxin as treatment for MAC. It also said that it should continue to be taken lifelong as therapy for prevention of MAC. I thought that was interesting. Has your doctor mentioned anything like that to you?? It is my understanding from my physician that I will be on these meds for one year, not more, not less. Since we are disposed towards MAC, I thought the lifelong therapy might be a good idea if the side effects are well tolerated. I know all these drugs can be dangerous and as the saying goes, our physicians are "practicing"; there is so much that isn't known... Peggy

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