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    Old 09-23-2004, 10:45 AM   #91
    chardonnay
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    Re: MAC ?(Mycobaterium avium complex)

    Hi Ann and Sharon, I saw my Infectious Disease Specialist today. My blood work came back okay and he is pleased. I feel like I'm doing lousy but he reminded me how powerful these meds are and that they can cause terrible side effects. He says mine (that would be all of ours - so far!) are mild. He said again, that I must stay on them for the full year and even then there is no assurance the infection will be gone. The only way to tell if the drugs have worked is after the treatment year to go off them and wait to see if the infection returns. So it's try to grin and bear it. I have eight months to go. Hard to believe as lousy as the three of us feel that we are lucky side effect wise. Ann, sure sorry you aren't feeling better. I can understand gradual improvement, but no improvement after going off your meds is a mystery.

    I just checked my CT scan reports and they do indicate I have Granulomatous Disease also. However, I don't have the phlem problems you both do. The whole thing seems difficult to understand, too many lung things going on at one time. How can any of us possibly know what is causing which symptoms? Well we just keep plugging away and do the best we can.

    Cheers and best wishes to you both, and anyone else out there who is suffering with MAC, Peggy

     
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    Old 09-23-2004, 04:28 PM   #92
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    Re: MAC ?(Mycobaterium avium complex)

    Hi Peggy & Sharon,
    Glad your bloodwork checked out okay Peggy and hopefully the MAC is gradually going away. I am like you. I am confused out the bacteria and the bronchieactasis and what shows up as what on the CT scans, etc. I did ask my regular Doctor today about what it is that comes up out of my lungs every night when I lie down and he said it is coming from the bronchieactasis. I told him I wasn't feeling any better than before I took all those meds. I actually went to him about the hurt in my stomach every night around the navel area. I will be taking stool samples Saturday and taking them to the hospital to check for parasites, MAC and fungus. I also got the Dr. to say that he thought the stomach problem and the mouth peeling inside might be connected. I now have to wait 6 weeks before I can find out if I have either of the three things in my small intestines. If I don't, then he said something about going into my intestines and doing a biopsy. I wish he would send me to Duke Medical Center in Durham, N. C. That is where a lot of folks go when other Drs. around can't find out what is wrong with you. Something has got to give here. He thanked me for my patience today and I told him my patience is wearing thin now. I have got to find out what my problem is so I can rest good at night.

    Anybody else out there on the healthboards whose mouth might be peeling inside and especially during the night and stomach hurting in the navel area with a dull ache every night please reply to this thread. I am getting desperate here!

    Hang in there girls! Ann

     
    Old 10-13-2004, 06:07 AM   #93
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    Re: MAC ?(Mycobaterium avium complex)

    Checking in Ladies, How are you? I didn't get notified by email of the lasts posts so I didn't know you had posted. I went to the pulmonologist Monday and she said that my lungs sound great. Bloodwork checked out fine. I had a stool specimen for yeast and it was fine. I have not and do not know where to get a flu shot. The vaccine had not arrived at Vanderbilt so the doctor wrote me a prescription and stated that I had a lung disease just in case I find somewhere they are giving the shots. My regular medical doc does not even have any vaccines. So it doesn't look like I will be getting a shot. I am going to purchase me some mouth masks and start wearing them when I go out in the public. My husband is notorious for catching the flu every year so I guess he will get it and get me down. Actually he got the flu in 2003 and being around him is when I started running the low grade fever and ended up in the Clinic with chest pains. So I assume the flu will be a disaster if I come into contact with it. Oh well, I am not going to panic because if I get it I will treat it the best I can and pray for the best. Right now I am having to deal with my older brother dying of lung cancer. He had tried for 7 mos. to find out why he was hurting. After numerous tests, scans, & xrays they gave him the devastating news about a month ago. He is going down so fast. I doubt he will last another month. His medical history sounds like mine. Doctors run all sorts of tests, scans, xrays, etc. but still cannot give you a diagnosis.

    Take care Ann & Peggy & STAY HEALTHY.

     
    Old 10-13-2004, 06:41 AM   #94
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    Re: MAC ?(Mycobaterium avium complex)

    Sharon, so sorry to hear about your brother. That is tough to deal with. Glad your tests came out so well.

    I know what you mean about the flue. I kid you not, last year I was very close to death with it and I don't think that is an exaggeration. I read in the paper today they are stopping the shots at local grocery stores, etc. (finally!!!) and will make the vaccine available to doctors, nursing homes, etc. However, shipments make not arrive for 6 to 8 weeks. Ugh!! I got a prescription from my doctor for Tamiflu so that if I do get it, at least it will be a milder case. Cost over $80 but I feel it is worth it.

    Nothing new health wise with me which is a good thing. My spirits and attitude are much better, can't tell you what has changed but am just grateful. I like myself once again. Take care and hang in there.

    Peggy

     
    Old 11-10-2004, 01:24 PM   #95
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    Re: MAC ?(Mycobaterium avium complex)

    Hey Ann & Peggy, I wanted to a check in and see how you were both doing. I hope your lungs & all over health is continuing to improve. My lungs seem to be much better. I don't have to go back to my infectious disease doc until March. He wanted me to continue my meds till the end of December & then quit them. SO that means I will only be taking them for a total of 6 months. I hope these meds have sent my disease in remission & never to return. I never did get a flu shot because there is none available around TN either. I have bought me some Zinc logenzes and Echinacea to have on hand in case I get a cold or flu type symptoms.

    Stay well.

    Sharon

     
    Old 11-11-2004, 04:10 AM   #96
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    Re: MAC ?(Mycobaterium avium complex)

    Hello Sharon & Peggy,

    I am so glad you both seem to feel better. Sharon, I am sorry to hear about your brother. My sister is going thru the same thing with her husband. He has melanoma and is now undergoing radiation treatments 5 days a week for about six weeks.

    I was able to get my flu shot at work. Can't tell much difference in the way I feel. The stool sample where they checked for bacteria, fungus and parasites turned out negative. I think I told you the sputum test turned out negative also. Sometimes I have my doubts on whether these tests are being done correctly or not. I guess having bronchiectasis also, it's hard to tell which symptoms are coming from what. My stomach still bothers me at night, so now they are checking my blood for food allergies. Should hear back from that test real soon. My mouth is still peeling inside. Got to get to the root of that also.

    Otherwise, I am just trying to finish up my job (11 working days left) and get on with another more relaxing life. My retirement party at work is Nov. 30th. All of Dec. I will be on vacation, go back Jan. 3rd for the last day.

    Got to run. My sister is spending 4 days with me. It's about time for her to get up. I always get up earlier than she does. Hopefully I will get in the habit of sleeping longer after retirement.

    Hope you both continue to improve. Enjoy your Thanksgiving coming up here real soon! Ann

     
    Old 11-11-2004, 04:48 AM   #97
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    Re: MAC ?(Mycobaterium avium complex)

    So glad your tests turned out o.k. But I am also like you about wondering if they are done correctly. I had a stool specimen done to make sure I didn't have yeast and it was o.k.
    My humble opinion, if that is worth anything") I think it is still your meds doing that to your mouth because my mouth was doing that too and the corners were splitting UNTIL....I bought these certain type of acidophilus pills. I am not allowed to post the brand name because I think that would be advertising & against board rules. I gave you some valuable info about the "15 billion viable cells" that I am sure you can search the net and this brand of acidophilus will pop up. These pills are the strongest brand of Acidophilus on the market. It has 15 billion viable cells per capsule. I take 3 of these pills a day. I read a study about the acidophilus capsules & pills and a lot of the pills on the market did not even pass the test for the potency and the strains that the company claimed was in the pills. These acidophilus capsules are expensive but if you search the net you can find them around $18.00 a bottle.

    Thank you for your empathy about my brother. He will be 60 next week. He is presently in the hospital now. The hospital ran more tests and he now has the cancer on his liver and in his lymph nodes. So it does not sound good at all. The tumors in his lung has shrunk but the cancer still is spreading in his body.

    A BIG CONGRATS! Congratulations on your retirement. Enjoy the rest of your life. Retirement is hard to get used too. My hubby retired me 5 years ago and I thought I was going to go crazy the first few months because I didn't know what to do with my time. I have a friend who lives in Fl and since the hurricanes came through there she is not getting to work. She is 65 and she does not like retirement. She says that she is bored.

     
    Old 11-11-2004, 06:48 AM   #98
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    Re: MAC ?(Mycobaterium avium complex)

    Sharon, so glad your lungs are feeling better. That's great. I've been on the meds one more month (I think) than you but have not noticed any lung improvement. As Anne says, it is difficult to tell which lung problem is causing what symptoms. I was hoping some of my symtoms were a result of the MAC instead of the COPD since then there was a chance to get better. I seem to have adjusted to the meds and doing okay on them. My spirits and attitude are good, much improved so I am grateful for that.

    I have to disagree with you about retirement. At least in Florida, there is so much going on one can be just as busy as they want to be. There are those who say they are bored and I find it difficult to understand. Sure, you can choose to stay at home and watch television or choose to get out and be active. I took up golf and love the game!! There are clubs, classes (be it adult education, exercise, crafts, etc.) card games; bridge and majon (I don't think I spelled that correctly) are popular here, cultural things to do (a lot of good performances here!!), volunteer opportunities, etc. etc... My husband and I use to fish and boat but gave that up because we didn't have time to do that and play golf also. That is one great thing about living in Florida, no shortage of interesting activities. When I retired, my director said I'd have a part time job within months, wrong!!! I never once missed working and my days are full. I wonder how people who work manage. I love retirement and am very grateful I have the opportunity to enjoy it. I do love and smell the roses everyday..

    Back to the MAC, I have a lung scan and blood work this month and appointments with my pulmonary and infectious disease physicians. Nov. 14th I complete the first six months of meds and according to my doctor, must do it for six more. I don't understand why doctors don't agree on treatment but I'm in for the long haul. Will let you know how my tests and appointments go.

    Talk with you again soon, my best to you both, Peggy

    Last edited by chardonnay; 11-11-2004 at 06:50 AM.

     
    Old 11-22-2004, 06:50 PM   #99
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    Re: MAC ?(Mycobaterium avium complex)

    Hi Anne and Sharon,

    I had a lung scan last week and saw my pulmonary doctor today. He was pleased with the scan results. Apparently the shadows in the scan are bacteria clusters and they have lessened. They are still there but are responding to the antibiotics. He said it is a nasty bug and takes at least a year to 18 months of antibiotics to get rid of it. Sharon, that being said, I can't help but be concerned about you going off the meds in only six months. I see him again in four months but don't have another lung scan until six months from now. Supposedly at that time, from that scan and other signs (symptoms, sputum, etc.) he will have a better idea if the bacteria is gone. I sure hope so!!!

    Hope you both enjoy a great Thanksgiving. We leave in the morning for Nashville to visit my family there. Sharon, I'll be thinking of you in Mt. Juliet. Stay in touch and my best wishes to you both.

    Peggy

     
    Old 11-23-2004, 03:49 PM   #100
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    Re: MAC ?(Mycobaterium avium complex)

    Peggy, I am so glad that you are doing better. I think you are right too about my doctors taking me off these meds so quickly. I am going to talk to my pulmonologist in a couple of weeks and tell her of my concern. My Infectious Disease doc stated that my areas were wide spread and he didn't think the areas where I had Mac was very large so he felt that 6 months on the meds was all I needed on the drugs. Every place I have researched and every forum I have read about Mycobacterium state that patients should take the drugs for the year to 18 months or longer. I don't want to go off these drugs too early and then have the MAC start spreading again. The doctor is going to wait 2 months before she takes another CT scan of my lungs because she wanted to see if the areas have cleared up or are spreading again. I just hope they know what they are doing.

    Gosh, I live in Nashville & you are going to be so close. I live about 5 miles from Mt. Juliet. Too bad we don't know each other because we could have met and had lunch. Take care & Happy Thanksgiving. Be safe over the holidays.

     
    Old 11-23-2004, 04:21 PM   #101
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    Re: MAC ?(Mycobaterium avium complex)

    Hi to you both,
    I am just trying to get finished with my job and then I will have more time to get back on the healthboards with you all and let you know what is going on. After the 30th with the exception of 1 day in Jan., I will have all the time I need to do things that I like to do. Trying to get packed now to go to my sisters at Wrightsville Beach tomorrow til Sunday. I do hope you both have a nice Thanksgiving and stay safe. Ann

     
    Old 11-23-2004, 05:05 PM   #102
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    Re: MAC ?(Mycobaterium avium complex)

    Hey Ann, hope you have a wonderful and safe Thanksgiving. Enjoy your time with your sis. I forgot to tell You and Peggy that my brother passed away on November 13th. He only lived about 8 weeks after the docs gave him the diagnosis of Lung Cancer. He tried to find out what was causing his pain from March until August and then finally the docs told him the 23rd of August that he had lung cancer. By the time the docs discovered he had lung cancer, the disease had already completely destroyed 3 ribs. Those ribs could not even be seen on an xray because they had deterioated away. It is sad that he had to be that bad with pain from a disease and yet the docs told him that they didn't have a diagnois for him. He was a christian so hopefully he is in a much better place now.

    Take care & be safe.

     
    Old 11-23-2004, 05:48 PM   #103
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    Re: MAC ?(Mycobaterium avium complex)

    I am so sorry to hear about your brother, Sharon. Sometimes, I wonder about the Drs. or maybe it is the expensive machinery that just doesn't detect everything. I have made a believer out of my Dr. When I tell him something now he believes what I am saying since he didn't send me to a lung Dr. when I told him something was wrong in my lungs. He thought I was a hypochondriac. I think I still have the MAC. But at the present time, we are working on my stomach problem. Blood work recently showed that I "might" be allergic to eggs. It's real hard not to eat anything with eggs in it. But I am trying my best for a few weeks to see if that affects the way my stomach feels. Have another appointment with my regular Dr. on Dec. 10th so we will see where he goes from there if I am not feeling any better. I have been dealing with Social Security, Medicare an supplemental insurance trying to get ready for retirement. Take care and enjoy your holiday. Ann

     
    Old 11-23-2004, 06:14 PM   #104
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    Re: MAC ?(Mycobaterium avium complex)

    Thanks for your empathy. I don't have too much faith in doctors. I am thankful that I am getting better, however, I was like you about my lung problem. I kept telling the docs that what ever was wrong with me was in my lungs but they wouldn't listen to me. I am a firm believer in being in tune with your body. I am constantly reading health sites to learn about health issues, vitamins, natural remedies, naturopathy,and alternative health. I believe in natural healing alone with medical treatment as well. I am not into all medical treatment because I believe that the medical community can do as much harm sometimes as they can good for a person. Since I got this disease, I have tried to completely turn my health around. I am eating much healthier foods, I have tried to eliminate as many preservatives from my bath & body products as possible. I make my own lotions, scrubs, soaps, etc. It just pays to be aware of what you eat, drink, and come in contact with in your enviroment.

    It is ironic that the docs are claiming allergies are the source of your stomach problems. By that I mean, my grandson has just been tested for allergies too and his allergies are lots of different foods. I don't know what he rated on eggs but he is a plus 6 on peanuts and the scores for allergies are from 0 to 6. So his parents are having to read all labels to make sure the food doesn't contain any type of peanut or almond oils.

    Good luck with your insurance dealings. I know I have dealt with Medicare for my parents before and boy that is a pain in the yahoo. Take care.

     
    Old 12-02-2004, 08:36 AM   #105
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    Re: MAC ?(Mycobaterium avium complex)

    Hi Ann and Sharon,

    The loss of a family member is always difficult, my sympathy and prayers go out to you and your family. I was never fortunate enough to have a brother or sister in my life but I certainly can understand what you are going through.

    Sharon, I wonder why the doctor is waiting two months to do a lung scan. In the event the bacteria are still there and would show up on a scan, why not do it now to be sure the bacteria are gone and then make the decision to take you off the anti-biotics? Waiting two months after you go off the meds to check to see if the bacteria has returned doesn't make sense without first checking to be sure they appear gone. Perhaps she has a good reason but if so it would be good to know what it is. Good luck with that. I am anxious to hear what the pulmonary physician has to say about it.

    Retirement is great!!! I hope you look forward to it with much anticipation.

    Good luck to both of you!! Sure enjoy and look forward to your messages.

    Peggy

     
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