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    Old 12-14-2004, 05:31 AM   #1
    chardonnay
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    MAC (Mycrobacterium Avium Complex)

    I have MAC and have been on antibiotics for seven months now. I've been having severe joint/muscle pain in my mid back. Anyone else out there with MAC experiencing this problem??

     
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    Old 12-19-2004, 01:13 PM   #2
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    Re: MAC (Mycrobacterium Avium Complex)

    Hi Peggy,
    I am glad that you responded to the Spots On Lungs thread or I would not have known what was wrong. I have been so busy (even though I haven't worked since 11/30 and only have 1/3/05 to go) I haven't even gotten onto the HealthBoard any. Sorry you are having pain in your back. I wonder if it is coming from the meds you are on for the MAC. I didn't have any pain associated with the meds that I took and got off of in September. Have you been to the Dr. with the pain? How much longer have you got to be on the meds...5 mos.? Do you feel any better now as far as the shortness of breath you were having and the tiredness?

    I have been doing pretty good. I went to the eye doctor recently and my eyes were about the same as last time. Optic nerve still on edge of causing me to develop glaucoma. I can tell my long distance is not quite as good as it was but he didn't change my prescription so they must not have changed much. Thankful that the meds did not bother them. Remember I told you and Sharon that I had read if you continue to look at a blue item everyday and it stays blue instead of looking like it is turning green, the meds are not affecting your eye sight. I assume that your doctors have given you all the grid to look at also periodically. I think that is to check your peripheral vision to see if that is being affected by the meds or it might be to check to see if glaucoma is present.

    My coughing up phlegm etc. out of my lungs is worse since I got off the meds. Right after I get into bed at night I have to keep coughing up the stuff that has accumulated in my bronchial tubes or lungs until I get it all coughed up. Again, I don't know if that is the MAC or bronchieactasis. I think it is the bronchieactasis. I go back to the lung doctor in March. I imagine he will want to go back into my lungs to see what is going on. I will be on Medicare then so I don't know how all of this is going to turn out moneywise. I do know that my lung doctor doesn't accept Medicare assignment so I am keeping my fingers crossed that my BCBS will pick up what Medicare doesn't pay.

    I hope Sharon is feeling better. Have you heard from her in awhile?

    I also hope both of you have a good Christmas. It will be here soon! We might get a few snow flurries tonight. Will not get above freezing tomorrow.

    Take care, Ann

     
    Old 12-20-2004, 07:58 AM   #3
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    Re: MAC (Mycrobacterium Avium Complex)

    Hi Ann, My regular physician referred me to a pain management doc. He thought the back pain might be from the MAC, changes in my lungs. Kind of like when one has a heart attack they get arm pain. Or it could be from the medications, or just a bursitis. He did give me an injection, but really didn't get the right spot and it has not helped. One sure gets tired of hurting. I know you are sick of coughing up phlegm. I don't have that problem but do have both the MAC and the Bronch.....however you spell it as you do. Did your doctor ever tell you your esophagus is scarred? Mine is but I'm not sure what that is from.

    My shortness of breath and getting tired/exhausted easily has not changed even though there has been some lessening of the bacteria. It will be interesting to see if that changes after I quit the meds. I've been on the four antibiotics for seven months now; at least five to go so I'm told. You took your two meds for one year, right? I worry that Sharon is being taken off hers too soon.

    The Medicare and BC/BS works well, at least our does. Our BC/BS picks up a percentage of what Medicare doesn't pay. Hopefully, you'll be pleasantly surprised.

    Good luck with the retirement and Happy Holidays. I hope Sharon finds the new thread.
    Peggy

     
    Old 12-29-2004, 05:44 AM   #4
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    Re: MAC (Mycrobacterium Avium Complex)

    Good morning Peggy,
    Hope you and your family had a good Christmas. I did...being with family and lots of good food...probably gained a pound or two. Did my two mile walk yesterday and it was cold because we still have snow and ice around in spots. Warming up this week though into the 60's. I was in Wilson,NC, for three days during Christmas and we got 4 inches of snow there.

    Sorry to hear that you still have the back pain. I can't imagine what could be causing that. Is it in the kidney area? I would have my urine checked periodically just in case just like they do the liver since the meds could probably affect the kidneys also. The lower part of my back bothers me especially when I bend over for any period of time but I think that is arthritis. I don't know if it is helping or hurting but I touch my toes 50 times each day. I feel like it is helping my back.

    I stayed on my meds from July of one year to September of the next year. I don't think it got rid of the MAC. As I said before, having both MAC and Bronchieactis is confusing. Last night as I lay in bed I was talking to my sister on the phone and I had to continually clear my throat because of the phlegm coming up from my lungs or bronchial tubes. My sister agreed that I really had a problem. After I lay there for awhile and keep clearing my throat it stops. The doctor explained to me that the phlegm accumulates because the lungs in the areas that are diseased do not do what they are supposed to do and process the phlegm and send it on thru the body like they should. I believe he said he could give me an inhaler that would help keep the phlegm from accumulating. I have to clear my throat during the day at times but not nearly as much as I do when I lie down flat at night on my back. When I was on the antibiotics I didn't have the problem as much.

    I hope Sharon finds this thread so we can see how she is doing. It's a shame we can't exchange phone numbers so we can keep up with each other or email addresses.

    Take care. Maybe the New Year will start out with you feeling better!

    Ann

     
    Old 12-31-2004, 05:12 PM   #5
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    Re: MAC (Mycrobacterium Avium Complex)

    Hey Ann & Peggy, I am doing o.k. I haven't thought about checking the boards. I don't get the board replies in my email anymore. I don't know why they stopped coming to my email. I have had a terrible month. I lost my brother who had lung cancer on November 13 and we buried him on November 16th. The 16th was his birthday and he would have been 59. It was a total shock that he died so quickly. He lived 52 days after being diagnosed with lung cancer. He had tried for 7 or 8 months to get a diagnosis and the doctors he was seeing kept telling him they could find nothing wrong with him. When they finally gave him a diagnosis (which came from an ER visit by another doctor who did a ct scan) the cancer had already destroyed 3 of his ribs. The ribs were completely gone and they could not be seen on the xrays. He suffered greatly with pain for months. Well to make matters worse, my only living brother who was 61 on December 6th died of a massive stroke on December 16th. So I lost my 2 brothers in one month. I guess you know now why I haven't been to the boards.

    I have had a few chest pains this week and these are the first pains I have had in several months. Today was the last day of my meds. I am worried that the docs are taking me off of the meds too early. I see the lung specialist Jan. 24th.

    I hate it that you both are having problems. My lungs seem better but I feel like my body is going down hill quickly. I have had back problems since Sept. 23. Some days I cannot even straighten my back for several minutes. I have osteoporosis so I assume it has something to do with that. I have been seeing a Reflexologist for this pain. She helps me more than any doctor has. I saw a nurse practioner and she prescribed a few muscle relaxers and told me to see an orthopaedic doc.

    My father will be 92 on Feb. 16th. I wonder how he managed to make it to this age without having any bad health problems. I had hoped I had his good health genes but I am beginning to wonder now with all the aches I have.

    Have a Happy Blessed New Year! Stay Healthy.

    Sharon

     
    Old 12-31-2004, 05:39 PM   #6
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    Re: MAC (Mycrobacterium Avium Complex)

    Hello Sharon,
    I am glad that you found this thread. Peggy said she had to start a new one because the other one got so large. Maybe you will be notified by email in the future.

    I am so sorry to hear about your brothers. That has got to be hard on you. They were so young too. I have two brothers and 3 sisters and I know as I get older, it's just a matter of time before one of us will be stricken with something that will be fatal. The sister who is 5 yrs. younger than I does have capillary leak syndrome which she has had for several years, takes a handful of pills everyday and gets gammuglobulin once a month. She has lived a lot longer than I thought she ever would. She is having stomach problems now and I hope it is IBS and not related to the capillary leak syndrome.

    Maybe the pain you are having in your chest is stress related and the meds have gotten rid of the MAC. I don't think mine is all gone. I'll go back to the lung doctor in April. Are you taking a medicine for your osteoporosis? I have that also and I am taking Evista. Are you a tall thin lady? They are more prone to have osteoporosis than shorter heavier folks. My doctor says he is not surprised that I have it because I am tall and slim. I was doing everything right like taking my calcium and walking and as soon as I got off Premarin, I was diagnosed with it. The only thing I do for the weakness in my back is touch my toes 50 times a day and do my two mile walk. I feel like both of those things help it a little bit.

    Maybe you will begin to feel better after the New Year comes in and some time passes to help you get over your losses. If you are able, walk as much as you can.

    Ann

     
    Old 12-31-2004, 06:28 PM   #7
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    Re: MAC (Mycrobacterium Avium Complex)

    Ann, I am a tall & thin woman. I had a hysterectomy 18 years ago and like you I did everything I was told to do such as extra calcium and took the hormone pills for 15 years. Even though I took all the extra precautions to prevent osteoporosis, I got it anyway. I tried all the drugs they had for osteo and they upset my stomach so badly I had to quit taking them. I now have an Aredia infusion every 3 months for my osteo. Aredia is actually a cancer treatment for breast cancer because it builds bone mass. So now doctors also use it to treat osteo. I have had 3 infusions. I asked my endocrinologist how long I had to take the aredia infusions and he said if I could tolerate them o.k. I would do them forever. I hate the ideal of all those strong chemicals going into my body, however, if I was taking the meds for the osteo then I would still be taking chemicals. I try not to take much meds but sometimes you have no other alternative. We have all found that out with our diseases, huh? I have not been able to do much of anything the past 3 months because my back hurts so badly. I actually did some exercises for my back and it set me back for 2 or 3 weeks. I got much worse.

    Let's hope we all have a much healthier and happier New Year.

     
    Old 01-01-2005, 01:30 PM   #8
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    Re: MAC (Mycrobacterium Avium Complex)

    Sharon, so sorry about your brothers. It doesn't sound like any of us are doing very well, on or off the strong antibiotics. I too had a hysterectomy over 20 years ago. So far I haven't been told I have osteoarthritis. Gosh, if it isn't one thing, it's 12.. Let's all hope our health improves in 2005. It is kind of refreshing starting a New Year, kind of like a new beginning and improved outlook. How long has it been since you've both had lung scans?? Did your last one show the MAC infection was cleared up???Best of luck to you both,
    Peggy

     
    Old 02-10-2005, 04:59 AM   #9
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    Re: MAC (Mycrobacterium Avium Complex)

    Hello Sharon and Peggy,
    Haven't heard anything from you in awhile and hope you are both feeling better with your treatments. Are you both still taking the medicines and how are you feeling?

    I went for a CAT scan yesterday and the doctor called me late yesterday and told me that it was worse than the one I had in September and that the MAC and the bronchieactatis are still there. He said short of taking my right upper lobe out, he didn't know of anything he could do. If you will remember I stopped my medicines in September. He suggested that I get back in touch with my infectious disease doctor and see if I could go back on the medicines. I am going to call and make me an appointment today. I sure do dread to get back on all those pills. I kind of wish he had given me a stronger dose back in July 2003 and maybe that would have gotten rid of more of the MAC. Don't know if I could have worked at my job taking so much medicine. Maybe I could handle it now that I am retired. You were both taking stronger doses than I was. I remember reading somewhere on the computer that the medicines have to be taken for life. Do you all recall seeing that somewhere? I don't know if we could take antibiotics for the rest of our lives...I believe I remember my infectious disease doctor telling me that after awhile we get immune to it and it doesn't do us any more good. That is probably why he took me off them. Anyway, I'll let you know if he puts me back on the medicines. Very discouraging.....Sharon, I hope your back is feeling better....Ann

     
    Old 02-10-2005, 04:19 PM   #10
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    Re: MAC (Mycrobacterium Avium Complex)

    Ann, I am so sorry to hear your news. I wondered why my doctor has me on four meds when you and Sharon were only on two. It would appear he is fighting the MAC more aggressively and I'm glad about that. He tells me I will be on them for one year, then go off for a month and be tested to see if the MAC has reappeared. It is his opinion a year is the minimum amount of time it takes to get rid of it which also causes me concern about Sharon. I also asked your question about being on the meds for life and according to him, that applies to those who have Aids, not those who don't. I too have read that the bacteria can become resistant to the antibiotics and it is less likely to happen if you are on more meds rather than less.

    I have been on four for almost nine months. I have been very fortunate that my side effects have been few. I sometimes have some stomach cramping, and occasional loose bowels. Of course, I'm tired, pooped most of the time. That is a side effect of both the MAC and the medication. I still have shortness of breath. Again, my doctor said even though the MAC may go away, the damage already done remains. To refresh your memory, I am on 600MG Zithromax, 100MG Lamprene, 600MG Rifampin, and 800MG Ethambutol.

    I hope your infectious disease specialist will re-evaluate you and put you back on stronger doses of the medications. He will need to repeat the bacteria culture tests and send them away to be tested to see what meds will work. Perhaps you'll need new meds or perhaps some of the old ones are still okay. I don't think anyone can possibly know without the testing. My doctor said it is necessary to be on the meds from 12 to 18 (or was it 24) months to get rid of the MAC and even then there are no guarantees the meds get rid of it.

    I'm still having a lot of back pain. The pain specialist thought it might be due to the MAC or the meds but the infectious disease specialist did not agree. I've had physical therapy and several rounds of trigger point injections, pain medication does not help. It looks as if I have no other options left other than to live with it. I use heat in the evening while watching television and that eases it a little.

    Please stay in touch and keep Sharon and I posted as to how you are doing. We care!!!!!!!!!! Take good care of yourself. Hang in there and hopefully your infectious disease doc will have something positive to offer. If he doesn't give you any satisfaction, I'd get a second opinion. With the best of wishes,

    Peggy

     
    Old 02-13-2005, 01:25 PM   #11
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    Re: MAC (Mycrobacterium Avium Complex)

    I have made an appointment with the infectious disease doctor later on this month and will let you know what he says. Take care. Ann

     
    Old 02-20-2005, 05:39 PM   #12
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    Re: MAC (Mycrobacterium Avium Complex)

    Oh Ann, I am sooooooo sad for you. I am very sorry that you had to get such disappointing news. I hardly come to the boards anymore and I never get notified when you post but I came to the boards to read about something else and thought I would check and see if you or Peggy had posted anything recently. I was so shocked to hear your news. We all have tried so hard to beat this MAC. I was on the same meds as you. Weren't you on Zithromax, Rifampin, & Ethambutol? I only stayed on Rifampin for 2 months and then 4 months with the other two drugs. Right now my lungs seem to be doing very well. I have much more energy than what I used to have. I have a lung scan toward the end of March to see how my lungs look since taking the meds & then being off the meds.
    Ann, our docs have done a total different treatment regimen than Peggy's docs. I seriously don't think my lung specialist or my infectious disease doc know how to treat or deal with people who have MAC & are otherwise healthy people. My infectious disease doctor told me that he only treated 2 or 3 patients a year with MAC besides his other patients who have MAC and I knew he was talking about his AIDS patients. SO to me he is not that knowledgeable about healthy people who have MAC. I don't think my lung specialist has treated many if ANY patients with MAC because she told me she had to call some place(I can't remember where) to find out what meds to put me on. Everything I have researched and read about MAC defines treatment of 12 to 18 months.

    Hang in there Ann, keep the faith, & keep fighting. It is discouraging I know but you can never give up. Please keep us posted. Like Peggy said, WE DO CARE.

     
    Old 02-24-2005, 05:01 AM   #13
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    Re: MAC (Mycrobacterium Avium Complex)

    Hi girls,
    Went to my infectious disease doctor yesterday. He called my lung doctor and they both decided that I would do the three sputum samples again. If they do not turn out to their expectation, my lung doctor will go back down into my lung and do a biopsy of the lung tissue and also get some other fluids out to test for the MAC and I think he can see what the bronchieactasis looks like. So, needless to say, I have my three little sputum cups that I will use to collect the specimens one at a time and run them over to the hospital the minute they are collected. That is a big problem because I have to be ready to go to the hospital all day just in case I cough up a sample. I can't do this at night which is the time I usually cough up the phlegm. I had rather have them go down into my lungs and skip the sputum sample stuff. All of this testing will help my infectious disease doctor know what kind of medicines to put me back on. I only took the two medicines, Ethambutol and Biaxin for the year and one half. I think the next time will be stronger doses. He said he had a couple of patients on the same as I was taking and they said they were about to kill them. He said I did real good while taking mine. Sounds like he hates to put me on Rifampin and Lamprene because of the bad side effects of those. So, in the meantime, I will try to keep up the walking to keep my lungs as strong as they can possibly be and also to help me keep in shape to withstand those strong medicines in the future. I hope you are both feeling better. By the way Sharon, if you will go to the top of the page and click on Thread Tools and click on Subscribe to Thread, I believe you will get notification in the future of any replies to this thread. Good luck to both of you. Ann

     
    Old 02-24-2005, 09:01 AM   #14
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    Re: MAC (Mycrobacterium Avium Complex)

    Ann, thanks for telling me about the email notification. Strange, I got emailed this time when you posted but I went ahead and did what you said do.

    I really hate you are having to start all over again. That is a real bummer. I feel like you about the lung biospy. I would want them to go in there too and get the biospies or fluids they need so the lab can do an accurate test. That was the only way they finally found out what I had. It was the 2nd bronchoscopy in 12 months but at least the docs finally got an accurate diagnosis. Hopefully, the docs can get you on the right meds and you can get some relief.

    Take care & know we are here for you any time you want to talk or need someone to share your worries & fears with. I'll keep you in my prayers.

     
    Old 02-24-2005, 10:59 AM   #15
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    Re: MAC (Mycrobacterium Avium Complex)

    Ann, I have tolerated the strong meds well. Hopefully, you will also. I have some stomach cramping once and awhile but not bad, very tolerable. Also, lose stools at times, also not a problem. I'm on both the meds you mentioned. Please keep us posted!! We're with you!! Peggy

     
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