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    Old 06-07-2004, 11:06 AM   #16
    chardonnay
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    Re: MAC ?(Mycobaterium avium complex)

    Ann, I returned to the Biaxin information and it also said that an uncommon side effect of Biaxin is "fungal infection of the mouth or throat". Then I remembered all your trouble with the peeling inside of your mouth. Was a fungal infection ever considered as the possible cause? Peggy

     
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    Old 06-07-2004, 04:09 PM   #17
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    Re: MAC ?(Mycobaterium avium complex)

    I don't know what happened to my post above with all the asterisk but must have been because I tried to type too much stuff. I take my 3 Ethambutol pills at one time in the mornings. My Biaxin I take twice a day, one in the morning and one in the evening. I asked the Dr. about how long I would be taking the meds and he said that one year which will be in July will be enough to do what it is going to do. He talks like you get immune to the medicine and it quits working at some point. Seems like I can tell it is helping a little more all the time. Does bacteria accumulate in your throat at night? Mine is not as bad as it was 11 months ago. My mouth was peeling before I got on the meds. I have tried the "swish and swallow" medicine and it doesn't help it. I really haven't had any problems with fungus since I got on the meds. Over all I think I feel a little better. Seems like I can walk a little faster and not quite as tiring to walk up a slight incline. If I can ever get retired in January and get more rest, then I can tell more about how much I have improved. Hang in there! Glad you are tolerating your meds. Keep in touch. Ann

     
    Old 06-07-2004, 06:52 PM   #18
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    Re: MAC ?(Mycobaterium avium complex)

    Hey Chardonnay & Suzey$,

    I wanted to answer your replies. Please have your eyes checked by an Ophthalmologist. I just had my eyes checked today by the Opthamologist. I just started my antibiotics Saturday so I can't blame my antibiotics for whatever is wrong. Anyway, I have to go back to the doc because my Optic Nerve in boths eyes is enlarged and I missed over 1/3 of the color blindness charts. So, I have no ideal what is going on. I just had my eyes checked by an optometrist 3 mos. ago and of course she didn't see anything. This only proves that you need to see an Ophthalmologist when you need your eyes examined. I am so thankful that I was referred to an Ophthalmologist and hopefully she can find out what my problem is and correct it or at least treat it. She asked if I had any eye diseases in the family and I told her Glaucoma so I could be starting to get that disease. I asked how often I have to see her on these meds and she said once a year. That seems strange since these drugs are so high risk. I would have thought I should see her every 3 months. I am going to ask the infectious disease doc how often I should be seen by an Ophthalmologist.

    Chardonnay, my med dosage is Zithromax 250 mg., Ethambutol 1400 mg., and Rifampin 600 mg. I started having chest pains really bad Saturaday. I have had a few pains today but not as severe as the last 2 days. My shortness of breathe has been much better the last 3 or 4 months. Do you take your Rimfampin on an empty stomach? It was posted on my pharmacy bottle to take it on an empty stomach. Anyway, the morning dosage really seems to cause my GERD to act up but so far I am doing o.k. with the other meds. I notice that my stomach is really swelling since I started these meds but among some of the side effects was possible gas. It is been some adventure researching this disease. I have spent hours researching this disease and read something everyday. I want to be as knowledgeable as I can so I can know what is going on in my plan of treatment. Gee, I hate to think of having a disease without having the use of a computer to do research.

    Have you been to the Mayo Clinic or the The National Jewish Hospital for help with this disease? I know they are the top two respiratory hospitals. I haven't seen my infectious disease doctor yet. So, I will wait and see what he says and how my drugs do before I pursue the prospect of another Hospital. Most sites I have read said these meds have to be taken anywhere from 6 mos. to 2 years and then you go on a maintenance dose to prevent further flair ups of the disease. Do you have any ideal where you could have picked up the MAC bacteria?

    Peggy, what part of Flordia do you live in? We have purchased a Lot in Navarre, Flordia so I know when we move there I will need to find some new specialists for following up on this disease. Gee, I am almost afraid to go to anymore doctors I feel like my body is or has fallen apart.

     
    Old 06-08-2004, 02:08 AM   #19
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    Re: MAC ?(Mycobaterium avium complex)

    Hi, I am a Glaucoma suspect also. My optic nerves are enlarged. I have always gone to an opthalmologist and not an optometrist. I am seeing him now every 4 to 6 mos. Because of being a glaucoma suspect I have been seeing him every 6 mos. for a long time. He gave me a grid to look at every week to see if I see any changes in the lines of the grid but haven't been doing that like I should. I read somewhere that if you are taking these meds for MAC that you need to look at the same blue object everyday and if it starts looking green instead of blue, get to the Dr. quick and stop taking the meds. As far as where you get the bacteria, they say it is everywhere including the water that we drink especially well water and the food that we eat and especially raw vegetables, etc. Let me know if either of you find out anything new about the disease. Ann

     
    Old 06-08-2004, 05:05 AM   #20
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    Re: MAC ?(Mycobaterium avium complex)

    That's fantastic Suzey$ that you go to an Ophthalmologist. I used to go to an Ophthalmologist until about 6 years ago & I started to see Optometrists every 2 years so I could get my glasses at one of those fast cheap places that makes glasses and boy I see now I messed up. I always took my sons to Ophthalmologists until they went off to college.

    I read some info from the National Jewish Hospital and they had done studies and had proven this MAC can be caught from enclosed hot tubs. Well, the house that we moved from in April had an enclosed hot tub in a separate room in the basement of the house. Even though, I rarely got in it the molecules of water were still being dispersed in the steam that came from the water so I think I got my MAC from that. I know there is no way to prove that theory because I know MAC is in the air, water, soil, bird droppings, vegetables, etc. I now scrub all my vegetables and fruits really well. I washed them before but now I am a fanatic. I read in some of the info that a MAC person should not eat raw fruits and vegetables. The article said MAC people should broil, bake, or steam their food because MAC could not live in temperatures above 176 degrees.
    Take Care

     
    Old 06-08-2004, 04:11 PM   #21
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    Re: MAC ?(Mycobaterium avium complex)

    I've heard the same thing about getting it from hot tubs. I haven't ever actually been in a hot tub. I think I got it because of the weak spot in my lung due to having bronchiectasis. I do eat a lot of raw vegetables in salads mostly at work so I don't know if they are clean or not. I doubt it. I have read so much about all this stuff, I can't remember all I read. I did see one little blurp in the Merck Manual when I was researching Bronchiectasis that caught my eye....It read "when CT reveals multiple small nodules with bronchiectasis in a nonimmunocompromised host without cystic fibrosis, Mycobacterium avium-intracellulare complex (MAIC) culture are commonly positive, and in some patients, MAIC granulomas suggest disease rather than mere colonization". I have read about intracellulare complex but I can't remember how it is different from MAC. Don't ask me why I have bronchiectasis because I don't know. I do know my mom had it and was diagnosed by the same Dr. that diagnosed mine. Take Care.

     
    Old 06-08-2004, 04:47 PM   #22
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    Re: MAC ?(Mycobaterium avium complex)

    I had a friend diagnosed with bronchiectasis a year or so ago. She was like you she did not have any ideal how she came down with it. I guess all of us are in that boat....why did we get this disease? Unfortunately, we will never know. Do you take any type of pain medication? I am having some horrible chest pains but I do not have any pain meds. I am allergic to lots of narcotics used for pain so I hope they can give me something to have if my pain becomes unbearable. It's ironic that this is in my lungs. I haven't had a cold in probably 18 years or longer. I have been lucky and never had the flu. My husband caught the flu last year and I started coughing really dry deep coughs about 5 days after he had the flu. I had a temp of 100 degrees for about 2 hours. I got really really hoarse about 4 or 5 days later. I have never lost my voice or had hoarseness like that. Then I had to go to the emergency care center about 2 days later because of horrible chest pains.

    I am angry at all the docs I went to in these past 15 months and did not diagnose me. None of them would give me a definite diagnosis because they didn't have one. I first thought it was 8 specialists I had seen to try to find out what was making me sick but I sat down today and wrote down all their names and I actually had gone to 11 different specialists for the sypmtoms I was experiencing. This is really sad. I tell all my friends and family if something is bothering them and docs want do anything or believe them then find another doc until you can get satisfaction and a diagnosis.
    I know we have a long battle ahead of us but we can beat this bacteria. We just have to have faith, pray, and do the best we can. I hate it that we all have this disease but it is solace in knowing other people share your grief and pain.

    Take care

     
    Old 06-08-2004, 09:08 PM   #23
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    Re: MAC ?(Mycobaterium avium complex)

    Thanks for the update. I'll try to answer your questions. I live in a small town about 30 miles south of Sarasota on the Florida west coast. That is where my doctors are. I do know that the Jewish Hospital is where my sensitivity cultures are being done. I plan on sticking with my Sarasota doctors as long as I feel like I'm getting good care.

    It's interesting, I too have a bad case of acid reflux, not that GERD has anything to do with the MAC. However, it seems some diseases often seem to be in groups. For example, I also have Irritable Bowel Syndrome and a bladder disease, Interstitial Cystitis, and they are often present with GERD or so I've been told. I appreciate the mention of taking Rifampin on an empty stomach. My doctor just told me to take my meds whenever I wanted during the day and I've been doing so in connection with meals. Guess I better change the Rifampin to inbetween meals.

    Guess I've been lucky with my side effects so far, just some nausea and low energy. My shortness of breath has gotten worse. It looks like from your experience, Anne, that any relief will be a long time coming. No, no idea where I picked up the MAC. I understand it is prevalent in the midwest so perhaps even when I was a child according to one doctor.

    It seems doctors give us all different information. I asked mine about raw vegetables, salads, and fruit. He said eat them, they are good for you!!! That's not what we read.... The more we communicate what we learn or hear, the better informed we'll be.

    Till later, Peggy Hope I answered your questions...

     
    Old 06-09-2004, 06:31 AM   #24
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    Re: MAC ?(Mycobaterium avium complex)

    I also have irritable bowel syndrome. I got a horrible bladder infection Dec. 24th. I was actually passing small bood clots through my urine and I could see them floating. I had a ct scan a week and half later and the urologist said I was fine. I had another bladder infection last week. I saw a nurse practioner for the last episode just so I could get antibiotics. I told her it was really strange why I have had two bladder infections in the past 6 months since I have not had a bladder infection in 20 years or so. Maybe my optic nerve enlargement is from this disease. After being diagnosed with MAI, I realize now that a lot of my problems are all probably steming from the disease.

    I will let you all know what my Infectious Disease doc says after I visit him Monday. It is nice just to compare notes from what all are doctors are prescribing. I am being seen at a teaching hospital or in the clinics there. I tried all the other New large hospitals and docs in this city and since I was desperate to find help, I chose this well known hospital for my next series of doctors. My hospital rates no 23 in the top 25 of Respiratory Hospitals in the US. It definitely isn't the top hospitals but at least they finally diagnosed me. It took them 3 months and test after test to diagnose me.

     
    Old 06-09-2004, 04:33 PM   #25
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    Re: MAC ?(Mycobaterium avium complex)

    I really don't have to take too much for pain. Once in awhile my shoulders will ache and sometimes I have sharp pains in the side of my head and I will take an Aleve and it goes away and I don't have to take another one for a month or so. I do take a baby aspirin everyday for the heart thing. I also take a Centrum Silver vitamin everyday and 2 calcium pills. The calcium pills that I take are OSCAL I believe made from some kind of shell fish or something similar. I have also read that Glucosimine (spelling?) that people take for their joints (Pres. Bush takes for his knee problems) is made from shellfish. Maybe that is why my joints don't ache much. Also, my walking helps with that. I also have to take a pill (Evista) everyday for osteoporosis that I got after I quit taking my estrogen and progesterone almost two years ago. I wish I hadn't stopped taking that. Estrogen keeps you young looking. I go to the Infectious Disease Dr. in a couple of weeks so I will see what he has to say about me getting off the pills. As bad as I hate to take pills, I think I will see if I can continue on them at least until December. After that, I will be on a Medicare Supplement and will have to pay for half of my medicine after a $250 deductible every year. The Biaxin and Ethambutol run a little over $400 a month and the Evista is about $100 a month. The Biaxin cost a lot more than the Ethambutol. Also, you kind of worry about having to take antibiotics for some other illness and it not working because we have been on them so long. In the past, I have had a bladder infection once in awhile and antibiotics would knock it right out. Haven't had one in awhile now. Hope both of you get along well with your meds and get that bacteria knocked out real soon. I wish I knew if the bacteria is somewhere other than the lungs. I contend that it is in my stomach. The Dr. doesn't say one way or the other and unless they go down into the stomach they really don't know. Before I got on the meds, my abdomen(somewhere in the navel area) use to have a dull ache in it every night and it would wake me up and it would be hard for me to get back to sleep. The ache has almost gone away now thank goodness. Take care. Ann

     
    Old 06-14-2004, 02:48 PM   #26
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    Re: MAC ?(Mycobaterium avium complex)

    Ann,
    I saw the Infectious Disease doc today. He reduced my Ethambutol from 1400 mg a day to 800 mg. I told him the Rifampin was tearing my stomach and esophagus up. He said that if I can continue the Rifampin for 2 months he would see about taking me off of it. I don't know if I can last that long. The Infectious Disease doc also thinks a lot of my chest pains is coming from the bad case of GERD that I have. I had the Endoscopy and the 24 hour esophageal ph test last month and I had 84 epsidodes of Acid in a 23 hour period. In other words, I am nothing but one big acid ball. The Infectious Disease doc said I might be a good candidate for the laparoscopy surgery for GERD. He thinks when my Gastroenterologist gets my acid under control then my chest pains should improve. I am taking 2 Nexium 30 mg everyday.

    The Infectious Disease doc said that he rarely treats healthy patients with MAI. He said that he averages maybe 1 to 2 healthy patients a year with MAI. I felt even worse knowing that I have a disease that is so uncommon that my Infectious Disease doctor, who practices at a huge teaching hospital, only treats 1 to 2 healthy patients a year. This doc said there was no way to tell how I got the disease. He said there was a possibility that my horrible acid backing up in my stomach caused some irritations in my lungs, thus when I came into contact with the mycobacterium it clung to my weakened lungs and started the bacteria growing in my lungs.
    My doc said that they do see a lot of MAI in very sick patients. I assumed he was talking about the AIDS patients. Unfortunately, MAI attacks AIDS patients quite often.
    I think I have the fungal infection in the mouth from these antibiotics. I have gotten sores in both corners of my mouth. My mouth peels a lot in the morning when I get up. So now I am trying to treat the sores. I had my first bood stick today since starting these meds. I also had a sputum check. I am anxious to see how these tests go. Hope all is going well with you and your meds.

     
    Old 06-15-2004, 02:14 AM   #27
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    Re: MAC ?(Mycobaterium avium complex)

    Been awake since 2:30 this morning worring about something at work so decided to check my email. Sounds like you are having a time with your meds. I think that is why my Dr. did not put me on Rifampin. He thought it would be too much for me to handle. I am still on the Ethambutol and Biaxin but go to the Dr. toward the end of this month so he might take me off all of them. I have had my mouth crack in the corners every once in awhile but it goes away. My mouth peels inside and is most noticeable in the mornings. My bottom lip feels kind of tender inside. I don't think my peeling mouth is caused by a fungus because I have tried the swish and swallow medication (Nystatin) and it didn't stop the peeling. You may have to get some of that to use if yours is caused by the antibiotics. How long have you been on Nexium? I tried that once when they diagnosed me with acid reflux (which I am not sure I even had enough to bother me) and it seemed to make me hurt worse. A girl that I work with tried to take it and it hurt her also. Maybe we didn't take it long enough. My Dr. treats a lot of AIDS patients also. That is why he thinks I look so good when I go to see him. What do they do with the sputum specimen? I would like to have that done so maybe they can tell what is causing the mouth to peel inside. Guess they would have to send it off somewhere to get a culture done which would take a few weeks for the results. I hope you get to feeling better. Take care. Ann

     
    Old 06-15-2004, 10:52 AM   #28
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    Re: MAC ?(Mycobaterium avium complex)

    Sorry you both have trouble with sores and peeling in the mouth. I've been lucky and not had that (yet anyway.....)Since you went on the MAC meds after I did, I'm surprised you had a sputum test so soon. Would they be rechecking the bacteria already??? So we all have GERD, must be common with MAC. Did your doctor say anything about the Nexium reducing your absorption of the MAC meds? When are you taking the Nexium in relation to the Rifampin, Ethambutol and Zithromax? I've been taking it in the middle of the night so it will be less likely to interfere with the other meds. My side effects have been tolerable so far, just increased shortness of breath, some nausea, and tiredness and lack of energy. Also terrible joint pain in both knees and nothing seems to help that. I had some knee pain in the evenings before I started the meds, but now it's continuous and much worse. My best wishes for you both. Peggy

     
    Old 06-15-2004, 11:55 AM   #29
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    Re: MAC ?(Mycobaterium avium complex)

    NO, my docs didn't say anything about the effects of Nexium being reduced because of my meds but I will start taking the pills at different times during the day now since you told me. I have the joint pain in my knees too but I have been having it for over a year. I was put on Bextra for the leg pain, however, as soon as my pain eased up a little I quit taking the Bextra because I didn't want to be on any meds. Ironic huh, now look at me, I am on so many meds I have to keep a schedule. I have eliminated coffee, tea, cokes, spices, etc. just trying to get some relief for the acid. I just feel like this Rifampin has caused the rawness I feel in my stomach and esophagus. Rifampin did me like this last year when they put me on it for 6 weeks. My pulmonologist ordered the sputum check. The Infectious Disease doc told me that it was a little bit too soon to give a sputum check so he didn't order one. I think the pulmonologist is checking to see if the Mac is showing up in the sputum.

    The Pulmonologist called me very late yesterday afternoon and said that my blood check I had done yesterday was all o.k. except that I have low white blood cell count. She wants me to come in next week and get another blood check. She thinks the meds is causing my low white blood cells, but since the Infectious Disease doc reduced the meds the pulmonologist thinks that will help my white blood cell count.

     
    Old 06-24-2004, 10:42 AM   #30
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    Re: MAC ?(Mycobaterium avium complex)

    Grammy, I just found out I've been taking my meds wrong. My doctor's nurse called yesterday to say the sensitivity test from the bronchoscopy finally came back and a fourth medication is being added to my regimen, two capsules of Lamprene 50MG. I called since I wasn't sure if it was two once a day or one twice a day. It's 100MG at one time so I asked about the Rifampin and Ethambutol. I've been taking them one tab twice a day and it is suppose to be two tabs once a day. I don't know if it will make any difference long term or not. Do you take the Ethambutol and Rifampin at the same time of day or at different times?? Don't know how I missed that. I thought I was following the instructions the doctor gave me in his office, I obviously misunderstood. Are you doing any better with your stomach??? Mine has gotten worse this week, but not nearly as dire as yours... Grammy, are you doing any better? Ann, how are you doing??
    Peggy

     
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