Hello to all my old friends and new ones. Thankfully the holidays are over! . All the relatives from Penna and New York and England meet here in New Jersey (since it's sort of the middle) to celebrate. They aren't worried about me being contagious. In fact they seem to not remember at all that I have any problem. The most help I got was being told the coffee pot needed refilling!!! This morning I finally put the last clean sheets and towels away. I get so exhausted I need to take an afternoon nap now. I wonder if there is something more than the MAC affecting me. I do know I have borderline CVID and need to go back to the immunoligist to have that checked next month. Fortunately her office is in with my pulmonary doc. Note to the newbies I learned here one of the best places for searching for info is to look up NTM. Also Acid Fast Bacteria will give you a look at how many forms there are and how they are related but not at all the same. The one definate thing to do is find a doctor whether pulmonary, infectious or whatever who listens and knows MAC. As soon as I got the primary diagnosis I was put on TB therapy and quarentined for 12 days.The doc told me not to worry that "there were dozens of cousins as to what it could be" It took 2 weeks for the MAC strain to be diagnosed and the meds adjusted. Compared to 300 miles the 20 each way I travel isn't bad but is farther than the pulmonary guy a mile from my house who I wouldn't let treat my worst enemy! The unofficial slogan here seems to be "knowledge is power". We might not have a lot of energy but we can be powerful !!!!
Hey Allegra, I have found out from my disease that because we as patients look fine on the outside then people think we aren't that sick. After battling this disease for 5 years & trying to explain it, I finally realized people thinks I am not really sick because I look very healthy.
I presently am not doing well. I have been having chest pains when I breathe for the last 2 weeks. It feels like pleurisy pain. I called the ID doc & he just said to take Azithromycin for 7 days. I called Pulmonary doc and she did x-rays, bloodwork, & PFT's & everything showed up fine but I am still in horrible pain.
I have been off my meds since August and I started having chest pains in October but the pains got severe 2 weeks ago. It feels like an elephant is standing on my right lung. My last CT in November showed I had a new area of ground glass opacity of unclear significance. I don't know if my Nocardia or the MAC is back or both but I do know there is something wrong. I guess I will just call National Jewish & get my name put on the list to return & let the doctors there find out what is going on. I just hope I don't get completely down before I can get an appointment at NJ. I just do not feel like battling my local doctors like I had to in 2003 & 2004.
I am new to the message board for MAC. When I went to see if there were any new posts it said that the thread was closed, but I found this one, seemingly with some of the same people. Is the "close" temporary or is there a new one? Sorry to be ignorant!
Jazzy, I noticed there is another MAC post in the Lung & Respiratory Disorders section. It is actually just a few posts below this one. I think you have been posting on that post. I just noticed that Allegra had started this post so I replied.
Im new here also and had been posting on the same thread as Jazzy had been..I did finally hear from my Pulm Doc and she confirmed Mycobacterium avium-intracellular infection in my lungs. SO I'm assuming thats where all the fatiege has been coming from all these years. I also have an autoimmune disease that effects my muscles, and several other RARE disorders. Ive been taking "Provigil" for 2 years now for the fateige, which intionaly worked wonders, it's indicated for narcolepsy which I dont have, but do have "central sleep apnea" which adds to this fateige that goes along with this wonderful disease!..The Provigil stopped working for me about a year ago which is when the nodules in my lungs were discovered. I had a wedge recection done on my right lung because they thought it was lung cancer, which thank GOd it wasnt!
I had that surgery done November 30th and am going through new pain NOW from that surgery. It feels like my right lung is stuck to something inside and making it difficult to get a "Comfortable" breath. Im due to go back and see my pulm doc in March for a re-scan and now have to see a cardiologist because my heart stopped twice the day after surgery. When I left there they were talking possibly needing a pace maker! This certiantly isnt where I thought Id be at 43! All my jobs I've ever had, have been physical, which I always enjoyed! Now Ive been on disability since June of 2007 after having to have brain surgery for another RARE genitic defect that was effecting my balance, totaly unrelated to my muscle disease. SO MANY doctors later..Finally found some that could diagnose all my issues at a Mayo clinic in Florida.
Yes I agree with that statement that everyone "thinking" you "look" good, so you must be fine! That is the most frustrating to deal with!
Now just learning about this infection, and seeing what treatment entails isnt something I want to have to endure! But I supose one day at a time attitude, and making the best out of what we have to deal with, is the attitude we have to have with all this. Right now my pulm doc dosent want to start any treatments. SHe wants to wait until March and the re-scan to see if the other nodules are still stable and take it from there. One of those have been stable for over a year, and the other is new and was very tiny when I had the wedge recection for the large one in my right lung. The two other nodules were NOT biospied during that surgery so still not sure if its infection, scarring, or cancer. I guess waiting and watching is the plan at this point.
I dont want to start treatment ULESS its absolutly nessesary. I have MANY adverce reactions to drugs, including any sort of anesthesia or sedation so every surgery is a risk for me with the anesthesia alone, never mind what they are going in for. SO just hoping I never have to start any treatment. Maybe wishfull thinking, but I will take what I can get!
I did find alot of accurate information on the Texas Institute web site on this infection. They have done 15+ years of research just on this strain alone.
So how long have all of you been dealing with this ugly monster?
And how many were treated like a "Leper" by Doc's that were ignorant about this infection?
Im looking foward to learning as much as I can from all of you, and most importantly, how you ALL cope.. GOd bless you all!
Annette, I have been fighting this disease for 5 years. My local doctors do not know how to actively treat the disease so I called National Jewish hospital & referred myself as a patient in 2005. The National Jewish doctors got me on the right meds but I had to come off of one of the meds in Oct. 2006 but continued with the Azithromycin & Ethambutol until August 2007. I didn't go back to NJewish hospital in 2007 because I was doing so good and my doctor had left so I didn't go back.
My local doctors took me off the meds in August 2007 & I started having chest pains again in October & these chest pains suddenly became severe 2 weeks ago so now I am trying to convince my doctors that something is wrong in my lungs even if it isn't showing up in their xrays, bloodwork, or PFT's. I could not get my local doctors to listen to me 5 years ago when I told them repeatedly that my problem was in my lungs. I know my body better than doctors. I am very much into healthy living. I take lots of supplements & vitamins. But when my local doctors would not listen to me in 2005 I finally got exhausted and fed up with paying medical bills without a diagnosis and referred myself to NJewish hospital. So needless to say, the MAC disease or the Nocardia (another bacteria) is spread throughout both lungs. Waiting to take meds is a disaster. The disease spreads quickly in some people and slowly in others. But personally, I would push your doctor to start you on the 3 antibiotics for MAC.
Yes, Tyler, Texas hospital is suppose to be one of the best institutions to treat MAC. If you can go to Tyler or the National Jewish hospital then please go there and get the top doctors who treat these bacterias opinion of your medical case.
Thanks for the reply. When I went to a local pulm doc here, he treated me like a leper!. THe man wouldnt come near me, and told me that I'm too complex for him to handle, that I should be sent to a infectious disease Doc and that I should be tested for HIV,(I did have to have 5 blood transfusions in 2001 for a surgery that went bad, BUT didnt expect this DOctor to tell me that!) and to concider myself "married" to Mayo clinic. Well the reason I went to him was to have someone local for me to see if the need be. Mayo is a 300 mile drive for me, but looks like Im going to have to keep going there.
Anyway, when I told my Pulm at Mayo what he said, she was angry. And said how sad it was that these Doc's dont keep up to date with this stuff. And the way he treated me was rediculus! SO she has written a full report with pathology reports for me to give to my local doctors here. That should come this week.
Im guessing Ive had this for sometime myself, and this mass that was removed in November was a "new" mass which was discovered in May of last year, I did have an old CT scan from sept of 2006 and it wasnt there then, so somewhere in that 8 month period it showed up. The nodule in the left lung was in that sept scan, and hasnet changed since then, so they feel that is scarring of some sort. But this micro nodule in the right lung wasnt there in August of 2007 , that one came between August, and Oct. of 2007. SO that one needs to be watched.
So we will see what happens come march when I re-scan.
My fateige Ive been dealing with since 2001, since the blood transfusions. I had lost 2/3rds of my blood supply in that one, and it wreaked havoc on my immune system. The fateige started then, and has gotten MUCH worse each year. Driving can be a hassard for me when distance is involved with the fateige. I have fallen asleep at the wheel before, so now it involves me pulling over and resting when It becomes nessesary.
Why did your local docs take you OFF the meds?. Were they doing sputum testing every month?
Thanks for all your info, as I said, Im here to get educated..
Glad to know that the message board wasn't gone! I went to an infectious disease doctor today, for the first time. She said they are still waiting on the MAC results, and don't expect them back for another week or two. I'm with Grammy, I know my body better than the doctors, and I am sure that I do have a recurrence of the infection. I have been being treated for pseudomonas infection for over 2 months and I still feel sick! I sweat so much at night it's unbelievable! Anyway, the doc prefers not to begin medication until they get the results back, so that is what I willl do. I have no desire to start on the 2 year road again, but cannot stand the thought of feeling this way much longer. I know some of you also have bronchiectasis. Have any of you had the pseudomonas infection? It is so nice to have you guys to talk to. Feeling like a leper isn't something anyone wants, and having others with similar experiences makes me feel more "normal!" So thanks to you all....
Jazzy, I no longer speak to anyone in public about the disease because of the leper treatment. The only time I speak of it is just to try and warn people of the dangers in soil and the water but again noone believes me because I look healthy. Too bad they can't see my lungs and then they would be all ears to hear what I am trying to say. My local doctors do not treat me like lepers but they still do not know how to actively treat the disease. My Pulmonologist had to call the American Thoracic Society to find out what meds to put me on.
I asked the Infectious Disease doc how many cases of MAC he treats and he said 1 or 2 cases a year of healthy people. I assume he might treat HIV patients to with that comment but he just didn't want to come out and reveal any info because of the HIPPA rule. Anyway, 1 or 2 patients is nothing. I wish I could find someone in my local area that knew how to treat my disease. I have tried 3 Pulmonoligists & 2 Infectious Disease doctors & none of them knew anything about the treatment.
I have a friend in FL that was treated for pseudomonas & he is doing great. I me these people while we were in Denver visiting the National Jewish hospital. He was having horrible time with the pseudomonas & his doctor sent him to NJewish. I could email his wife & see what medication he took if you would like.
Annette, I just feel for you so deeply to know how you are suffering with all your problems. Please be very careful when driving. You would never forgive yourself if you hurt someone else while driving. Some of these docs are such a pain in the behind. They are only in the medical profession for the money & not to really help people who are sick. It is sad that is what has happened to medicine. In answer to your question, No I never gave monthly sputums. I have had this disease for 5 years & I have never been able to give a sputum culture on demand. I rarely produce sputum. I did give a culture one time in NJewish , however, it didn't show MAC because of my disease is located so deeply in my lungs the NJewish doctors told me I couldn't cough up sputum from those deep areas. The docs at NJ knew I had MAC & Nocardia because they were testing my bronchoscopy cultures so this just shows you sputum cultures can be negative even though the disease is active.
Grammy (I feel strange calling you that, since by your name I assume you are only a year older than me!), thanks for checking into the meds. I've been on Cipro for over two months and they just added an inhaled antibiotic. I thought I was feeling better, but am back to coughing blood again today! It's really frustrating. I get the same reaction from people. They think I look healthy, so they expect me to just bounce back from my "colds." The pulmonologist I started with left private practice a year ago. He is open to talking to me, but I don't feel comfortable calling him because he's not my doctor anymore. His replacement is competent, but I just don't have the connection. I wish I was closer to Colorado -- it sounds like they know what they are doing there. Even though I have no interest in starting a two year regimine of meds again for the MAC I certainly don't want this stuff hanging out in my lungs! That's another thing that stinks, people think you are going to infect them. The way my doc explained to my husband, we are not contagious to the general public, only people like ourselves. But being that this is a "cousin" to TB, it is really frightening to people. So, yeah, like you I keep quiet about what is going on. I'm just a 52 year old who feels 80! How are you feeling these days? Here in the NW it's been kinda cold. Does the cold air bother your lungs at all? Not so much for me, but then it's not like I'm out jogging in it! Take care and thank you so much for your help and concern!
Hello Grammy and Jazzy,
Its SO Nice having someone to talk to about all of this! As I said everything I have is RARE, and my only resource to finding others have been on the internet, so Im grateful for this site! So I can share, and learn as much as I can. Knowledge is Power I say!
Grammy, Yes Im VERY careful when Im driving. When that happen to me my youngest son was with me, and it really shook me up! I had an Angel on my shoulders that day, that woke me up before I hit the car on the shoulder of the road, everyone that was behind me had backed off and gave me room to swerve and avoid catastrify. I learned my lesson TRUST ME! I now as I said pull over and rest when I need to. It's certiantly NOT worth it!
THe reason I asked about the sputum tests was because thats what I had read in the Texas site as the treatment and follow-up requirements. Im trying to figure out what to do as far as moving. Im thinking of moving closer to Mayo so I can avoid all the driving, but that leaves me with no family to help or be there for my son if I should need to go into the hospital for anything.
Prior to having Brain surgery I was working 10-12 hour days, doing a very physical Job, and supporting my son and I. I owned a home. Since then, having ANOTHER reaction to anesthesia, left me with more muscle weakness and still dealing with mild balance issues,and this incredable fatige that I was unable to return to work.
SO in that time since June and being on disability, and building an incredable amount of dept trying to save my credit,and had raising health dept, I ended up having to sell my home, and at 43 move in temporarly with my parents! NOT where I expected to be. I was able to get rid of the dept and save my credit, now trying to figure out where to go.
Im tossing with the idea now of moving closer to Mayo, but as I said, wouldnt have any one near to help with my son. If I wouldnt need monthly sputum tests or labs, although like you I do not produce any sputum, maybe I wouldnt have to go over there too often?..
I did get a NEW schedule from Mayo this week, and it seems my Pulm doc wants to see me sooner, the 12th of Feb now, and ordered more tests..so we will see. Just hoping I wont need treatment.
I guess Ive rambled enough, but as I said its so wonderful to have others to chat with about all this!
Hope you all are doing well and stay as healthy as possible.
Jazzy my name is Sharon so you don't have to call me Grammy. I am just a grandmother to 4 darling little boys & I wanted them to call me grammy but none of them could say it when they started talking so 2 grandsons calls me Gaga & the other 2 grandsons call me Nannay. So I just called myself Grammy when I signed on to the board. Funny, I now get called Grammy.
I emailed my friend in FL to find out what drug her husband took for the pseudomonas. The National Jewish docs put him on this drug & he got rid of it. He has not been back to NJewish since that one trip. You sound like you are having a horrible time with your disease. I guess if I ever cough up blood I will be frightened. I have read that if you cough up a cup or more of blood to get yourself to the ER quick. Sometimes I see a few specks of blood but I guess it is from the bronchiectasis that I now have. Since I got MAC in 2003, I now have Nocardia, bronchiectasis, & emphysema. The doctors at NJewish said the brochiectasis & emphysema was probably caused from my MAC infection. I am having some bad chest pains now when I breathe. My chest is sore from all the pain. I have been having these pains for 2 weeks now.
I am in Tennessee & we have had a very mild winter. Actually, a crazy winter. Some days it is so warm then the following week it will get extremely cold. So I really haven't noticed the cold air hurting my lungs. I don't get out in the weather too much. I babysit my 8 month old grandson so I stay in most of the time.
Annette, you sound like you are a very hard working person who loves her children dearly & has the proper values in life. I admire you that you have done so much to stay afloat financially after all you have been through. This is only my personal opinion about moving. I really think you need to be close to your family not only for your sons but for you. You sound like you have already had some horrible medical problems. If you should have more medical issues later then you will need someone to help take care of your boys & you. You sound like you are very independent. Hey, I know how you are feeling because I was a single divorced mother who raised her 2 boys on her own. I too worked a very physical job and kept a good credit record too because I was determined to make it own my own & raise my kids the proper way. But I also lived close to my family and I could always rely on my sister to help me with my boys if I was sick or needed her help. So, what I am trying to say is I think you should stay close by to your family to help you if you need it. Is there anyone who you could get to help drive you to the Mayo clinic? Take care. Sharon
Hi Sharon, my name is Jolynn. I have two granddaughters -- and I absolutely love being a grandma! My younger granddaughter, 9, was just diagnosed with asthma. I worry about her developing lung problems. My mother died of emphysema, although I wonder about the diagnosis. I remember her having many of the same symptoms that I have and she was never treated with anything but common antibiotics. I think she may have had MAC because they were always saying she had a TB type illness. But as I say, she wasn't treated for that. I'm feeling somewhat better than I was before I started this 2 antibiotic routine, but I know there is something else going on. I don't feel comfortable telling the doctor that I feel I need something more. That's where this message board really comes in handy. I read the stories the rest of you tell and I realize that it is quite common for doctors to not know how to really treat this disease! What they don't seem to realize is that those of us living with this have to suffer through regardless. I worry that my lungs are just going to keep getting more and more destroyed until they are irrepairable! Does your doctor say that the MAC infection caused the bronchiectasis? The way I understand my condition is that I developed the bronciectasis because of repeated pneumonia when I was a kid. I was always resistant to the antibiotics, so I would never fully recover from the episodes. Consequently I developed the pockets in my lungs. Then as I grew older I started catching these odd bacteria in them. This is probably one of those diseases that they haven't quite figured out. Well, thanks again for your input -- it really helps!
Jazzy the name of that drug that my friend used for his pseudomonas is Tobramycin. He now uses it in his nebulizer. For the nebulizer it is specially compounded and they call it Tobi. He does the nebulizer one month on and one month off. He had been on this before they went to NJewish when he would be in the hospital. NJC put him on the nebulizer. And his wife believes that was the answer that helped him. I don't know if you have tried this medication but it might be worth mentioning to your doctor.
The NJewish doctors told me they felt my bronchiectasis was caused by the MAC because the bronchiectasis was never mentioned in my health records until I had started treatment for MAC. The local docs never even told me I had it until I was looking at my record on the computer as my doctor was reading my case & I saw bronchiectasis so I asked if I had it. How they failed to mention this to me is beyond me. The doctors only tell you what little info they want you to know. But now brochiectasis is mentioned quite often in my CT reports. So boom it looks like the MAC has made the bronchiectasis spread.