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Old 06-23-2008, 05:57 AM   #1
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Mycobacterium avium complex (MAC/MAI)

Hello Ladies,

I see we out grew our thread and figured I'd start a new one. Hope you all find it.

Well back from Vacation and had a wonderful time. The train trip going up was a nightmare. It was like riding a roller coaster without the hills. I was so beat up by the time I got there. But the trip back was much nicer, and smoother. I learned something, it does matter what type of train you take. The "silver meateure"(sp) was slower which makes the difference in how smooth the ride is. So given the ride on the way home, I would just make sure I booked myself on the slower train and would do it again.

I'm glad to hear you all seem to be doing well, thats fantastic to hear! We have to take advantage of every day we feel well for sure! I've been having those "twinges" of pain like I had before when my MAC was growing , but in a different area. When I looked at my last CT results thats exactly the area as these new "nodular thickening" are. It's doing the same thing where I will get that slight pain, then will get a numbness in my arm. It's not a constant thing, so it's hard to complain about. After I had had surgery for the intional MAC and told my pulm doc about those slight pains and numbness(after the fact) she said it was probably because it was attatching itself to my chest wall. I have no symptoms as far as respitory, as before, but the fatigue is going strong. I was happy to know my next CT was scheduled for July, BUT NOW while on vacation I got a new revised schedule and they changed it to late August! So now I don't know what to do! The other reason they had moved it up was to coinside my appt. with the cardiologist appt. I guess I'm going to have to call them and see if they can move it back to July.

Well one thing that did happen while on vacation was I ended up in the ER three times! The first weekend I went to "camp" with my boys. It was at a lake. I didnt go in the water because of the cardiac implant and the internal "stitch" that worked its way out at the corner of the incision, leaving it sort of open. I took a shower Sat. morning,(find out AFTER the fact it was lake water in the shower!) and by afternoon I had a red circle around the incision about the size of a quarter, I put some neosporan on it but by the next morning half my boob was red and swollen. We left that late afternoon, and when I got back into town I went to the ER, by that time my whole boob and part of the center on my chest was swollen ,red, and hot.
They drew an outline of the area, and while sitting there it had grown outside the boarders. It took them 6 attemps at trying to get a blood sample, then a seventh to start IV levequin and gave me a script for Bactrim. Diagnosed with Cellulitis. They wanted to admit me but I refused. There was NO WAY I was staying in the hospital given me a greater risk at catching something else while I was there! So they made me promise I would come back the next morning to have it re-checked. So I did go back, and there was improvement in that it was back within the boarders of the outline they had made. SO they added a script for Levequin along with the Bactrim for 10 days. It continued to improve, until I got my massage!..Unbelievable! It started getting pink again, so I did go back but they felt we were doing all we could at that point as far as antibiotics and with the massage it increased the circulation causing it to drain a little, but thankfully didnt get any worse and eventualy went away by the end of the 10days.

So other than that DETORE in vacation everything else went wonderful! The boy's and I had an awesome time, and they will be coming home mid July.
I'm looking forward to catching up with you all!

Take care, GOd bless.
Annette

Last edited by Momof2sons; 06-23-2008 at 06:05 AM.

 
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Old 06-23-2008, 06:04 PM   #2
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Re: Mycobacterium avium complex (MAC/MAI)

Welcome back Annette. It's good to know you survived and had some fun despite your ER visits. Girl, you are a fighter. I know you really enjoyed your time with your sons. Well, you answered my questions about the train ride. I do want to take a train ride but not on a long trip like you did. I hope you stay well and get over this cellulitis quickly.

I am still doing o.k. I coughed up a couple of bad looking clumps today. I actually saved one in case I coughed up any more I thought I might be able to get a culture of them. If I don't cough up anymore then I want be taking my sputum culture in to the lab. I don't do sputum cultures because the only 2 or 3 that I have ever done always came back negative, however, the broch washings was always positive for MAC & Nocardia so I don't rely on sputum cultures. I haven't had a bronchoscopy in 3 years now.

 
Old 06-24-2008, 06:36 AM   #3
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Re: Mycobacterium avium complex (MAC/MAI)

Sharon,

So good to hear from you! Sorry to hear your coughing up junk. I sure hope it's something that will pass, if not, don't wait too long to request getting a bronch done.

I have an appt. with my Neurologist today, we will see what that brings. I do have some paperwork for her to fill out while I'm there for disability. What a long drawn out process! It's not enough that I have TWO diseases that qualify me for social security, being MAC, and Myositis but now they want to know about a herniated disc I have had since 2005 in my lower back, and whether I had physical theropy, and where I had it back then! Just draw it out some more. I guess it's one way to keep us fighting, and keep us tired! Good Greef!

Anyway, I hope your feeling better, and getting some wonderful weather. Take care, God bless, and stay strong!
Annette

 
Old 06-25-2008, 09:32 AM   #4
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Re: Mycobacterium avium complex (MAC/MAI)

Hey Annette, how long does it take to test a sputum culture? Does the lab have to grow the culture for weeks like they do when you do a bronchoscopy washing or biopsy? I took the culture into the hospital yesterday for testing but it has been so long since I had a culture tested that I can't remember how long it takes to get results of the test.

The doctors at NJewish told me that my MAC disease was so deep in my lungs that I couldn't get a good culture because I couldn't cough up the junk from the diseased areas. So that was the reason my sputum cultures were always negative.

 
Old 06-25-2008, 05:00 PM   #5
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Re: Mycobacterium avium complex (MAC/MAI)

Sharon,

I am guessing because I have never done a sputum culture before, I dont cough anything up. But even when I had my surgery it was approx 3 weeks for me to get results as to what type of infection it was. SO my best guess would be a few weeks for it to grow?
I'm glad you did decided to take your sample in. Better to be safe than sorry. If it comes back negative and your still coughing up junk, I would go for a bronch, you know better than I what the ramifications are if we don't.
Please let us know what results are.
Wish you well my friend! Take care, God bless, and stay strong!
Annette

 
Old 06-27-2008, 12:30 PM   #6
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Re: Mycobacterium avium complex (MAC/MAI)

Hello in our new place. I hope everyone can find their way here.We all need each others input and a place to vent. Back in 2006 I had a bronchopsy that didn't grow anything either...even the lung washing samples or whatever they are called all were happily negitive. A month later I got bronchitis and had a simple X-ray and that showed new nodules. From there it was PETScan and then the VATS surgery. Four days later when I went back to the surgeon to have the chest tube removed he said the labs showed I had TB!!! My pulmonary doc called later in the day and explained about all the "cousins" it could be and not to panic. He said he sent the samples to NJ in Denver. He put me on 6 awful meds and I had to be quarentined for 14 days but to go see him on day 15. By the time I went to see him he had all the results and I was introduced to Lady Windemere Syndrome aka MAI/MAC. So to shorten this... cultures should take about 2 weeks. Yesterday I had blood test results from my neuroligist and my liver C reactive protien is up to 7 again. When I went off the meds in February it was down to 2 (was 12 when I was first diagnoised). Guess I should call pulmonary guy and tell him. By the way it's intresting to hear your thoughts about trains. I've been riding them since I was small enough to be boosted up the steps. I guess it's what you're used to?

Last edited by Allegra; 06-27-2008 at 12:31 PM.

 
Old 06-27-2008, 12:42 PM   #7
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Re: Mycobacterium avium complex (MAC/MAI)

Thanks Allegra for your input on these sputum cultures & bronch washings. Isn't it odd how bronchoscopy washings & sputum cultures can be negative, however, you test positive for MAC in other ways such as CT's, xrays, etc. Many people rely just on the sputum cultures to see if their MAC is active or inactive and they could be getting a false answer with the cultures. Why did you have to have the VATS surgery? You may have told me before but I can't remember.

I know something is wrong with my lungs because of the exhaustion that I am experiencing right now. I know it is extremely hot and the air quality in Nashville is currently bad so I may just be experiencing some effects from being outside in this air. I guess I will wait to see what my sputum cultures show. Take care everyone.

 
Old 06-28-2008, 05:49 AM   #8
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Re: Mycobacterium avium complex (MAC/MAI)

Allegra,

Was the reason for VATS thinking it may be malignant, or trying to identify the infection? I had an open thorocotomy because they thought intionaly it was cancer. My cancer staging procedure along with bronch washing and brushing, all came back negative for infection, but I dont believe they checked for MAC/MAI. They had checked for the more common infections being Fungal, TB, Pnemonia...ect. My PET scan also showed "Hypermedobolic uptake", so they did tell me it was there was a 97% chance it was malignant. Was that your experience also with this infection? I am shocked they sent you home with the chest tube! I was in the hospital 5 days, but I had had the "Open" procedure, maybe thats why? They pulled the chest tube day 4 I believe. Did you have more than one nodule when you had the surgery? I had one small 6mm nodule in my right lung that they were watching, and at the second 3 month CT scan it had tripled in size to 1.9cm and became "spiculated" in shape. It was approx three weeks from that scan, PET, and staging procedure I had surgery, by that time it was up to 3cm, and I had a new "micro" nodule in there also. They did a generous "wedge resection" to remove it, then while waiting for results, removed a bunch of lymph nodes that also looked supicious, until the results came in. They then knew it was an infectious process, but wasnt identified as MAI until approx three weeks. Well, at least thats when "I" found out. Mayo clinic actually told me they are using my CT scan as a teaching tool for MAI infection, and how it CAN closely mimic cancer. As I had said before, I NOW have two new "nodular thickening" areas at the line they resected, and they now need to be followed. I re-scan in August for them. I just hate the not "knowing" with these nodules. With the muscle disease I have can make me more suceptable to malignacy, so it seems to keep me on edge.
What is the connection with the liver enzymes, and MAC/MAI? Is that something they know? ALso, I see you mentioned you see a neurologist as well, do you also suffer a neuromuscular, or autoimmune disease as well?
Yes the train ride on the way up was terrible, my son even hated it. But as I said, when booking the train, one train was faster by two hours and traveled much faster that was from Jacksonville FL to Penn station in NY city. The train from Ny city to Albany NY was wonderful, and was slower moving. I was actually dreading the ride home, but as I said, it was MUCH better, but also noticed it was slower moving as was the other train. So I'm just guessing that is the reason being slower is better when it comes to trains. I have had a craniotomy, and my skull still isnt fused together, so I got pretty beat up on the faster train, and had MAJOR "sea legs" for a few days after getting there. My muscles also were sore just trying to keep hold myself still while on there. I guess I needed to "become...ONE with the TRAIN"....LOL... But on the way back it was nothing like that. It was a 22 hour ride...so who knows.
Anyway, I sure hope you get to see your pulm doc soon, and get these things addressed!
Take care, and GOd bless.
Annette

 
Old 07-01-2008, 08:41 AM   #9
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Re: Mycobacterium avium complex (MAC/MAI)

Ok will try to answer questions. The simple X-ray for the bronchitis showed some new growths,so I had a CTScan that showed it more clearly but still unknown. It was a questionable spot in the upper left lobe. Since my bronchopsy didn't reveal anything it was thought to be any number of things from A to Z to who knows. I joked to my husband it was probably just some inhaled cat and dog fur.(He was more upset than I was when he discovered the surgery was in the cancer center at the hospital).Then came the PET Scan which showed nodules in the upper left and the upper right. So the pulmonary doc said he really wanted to know what was going on in there. He called the surgeon himself while I was in his office to make my appointment! Less than a month later I had the VATS procedure. They found a 10x5 mm. nodule and a bunch of little ones along with some lymph nodes that they removed and sent for testing too. I was in the hospital for 4 days and convinced them to let me come home if I went to the docs every day.(40 mile round trip but hey that didn't bother me! I was on drugs and not driving!) Although it really is hard to figure out what to wear out in public with a chest tube sticking out! So that was it. Hope this clears things up. Now I go see the dentist!!

 
Old 07-03-2008, 03:46 PM   #10
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Re: Mycobacterium avium complex (MAC/MAI)

Hey y'all - I've just joined up. I was Googling MAC and found your thread. Read all the way back to the beginning of the closed thread, so I feel like I know you already.
Here's my story: In may 2007 I had a right middle lobe thoracotomy for bronchioloaveolor carcinoma. During the work-up for the cancer, my bronchoscopy washings grew out MAC in the culture. I was pretty much asymptomatic for both the cancer and the MAC. I recovered well from surgery and went back to work. About last Christmas I started to experience dry coughing and dreadful fatigue. My February 2008 CT scan showed MAC, which they had assured me was excised along with the cancer, had returned. I saw an ID doctor in April. He thought it was too early to go to meds for the MAC and told me to wait until (if?) more symptoms appeared. Since April I have developed a deeper, more frequent, but nonproductive cough. The fatigue is nearly disabling, but I force myself to work as much as possible, dreaming only of going back to bed as soon as possible. Another major problem has been GI distress, including nausea and diarrhea. My gastroenterologist thinks I may have Irritable Bowel Syndrome, but I wondering if any of this comes from the MAC.
I have another visit to the ID doctor on Monday July 7. Do y'all have any advice for me?
Thanks for being there. Like so many of you, I thought I was the only one going through all this!

 
Old 07-04-2008, 05:25 AM   #11
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Re: Mycobacterium avium complex (MAC/MAI)

Daisyaday,

Welcome to the board, although I hate to hear yet someone else is suffering from all this, I'm glad you found us! I have found it somehow more comforting knowing there are others out there that we can share with who understands exactly what were going through.

I'm not sure about the others here, but I too suffer from major digestive issues, with the dirreha, and NOW since the thoracotomy I have major nausea! For me when I eat it FEELS like it gets stuck up high in my stomach like below my ribs, and everything below that is gas and water. My last CT scan showed I now have some dialation of some of the small bowel loops. THis was the first time that has shown up on CT scan in all the sacns I've had. Do you have copies of your CT to see if this is mentioned on yours? When I looked that up online it says it CAN be related to a partical obstruction in the small bowels. I'm not sure if this is more related to the surgery, or the MAC itself? I've had the chronic diarreha for years, but not the nausea, as I said thats new since the surgery. Also new is now the diarreha comes with severe cramping. I am going to mention this to my pulmonologist when I re-scan next month, and am interested in what that scan will show reguarding my small bowels. I also think Im going to ask them to test either my stool, or blood for MAC if thats possible. There is something NOT right there thats for sure. I would certiantly mention your issues to the ID doc during your visit and see what they say, then if you would come share their responce with us.

The fatigue is the WORST thats for sure! I think we ALL relate to that! Most days I feel like a slug, and can't get the energy! I used to work 10-12 hour days in a very physical job, and havent worked in over a year now. Currently filing for social security now. NOT where I thought I'd be at 43, thats for sure!

Do you suffer from any sort of autoimmune diseases also? Seems several of us have various auto immune issues along with the MAC. Which seemed to have made us more suceptable to the MAC.

Did you have to go through any chemo, or radiation after the surgery for the cancer? My Febuary 2008 scan which was my post op scan showed new "nodular thickening" in the line of resection that they need to follow. They "think" this new nodular activity is benign given the fact the main lesion was benign. I sure hate that word "THINK"! But, there's nothing I can do until this next scheduled CT to see if there is any growth in those.

Anyway, Daisy, It's nice to meet you, and please come here anytime and share, or vent. We all can learn so much from each others experiences. And of course its nice to have someone else to talk with that is going through the same issues.

WIsh you the best,
take care, and God bless.
Annette

 
Old 07-06-2008, 03:30 PM   #12
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Re: Mycobacterium avium complex (MAC/MAI)

THANKS for replying so soon! I'm hungry for anything y'all have to say. My doctors so far have downplayed this condition, and I had no idea it was such a bear.
My digestive health history makes attributing the current problems to MAC kind of dicey. I, too, have had bouts of diarrhea for years. But then I also found out two years ago that I have achalasia, another weird disorder that affects only about 1 in 100,000 people. (Aren't I blessed?) I had surgery for that, and now I can swallow better, but I'm left with all of the other digestive problems (nausea, diarrhea, heartburn, gas, extreme sensitivity to certain foods). I shall ask my doc tomorrow about all this and will let you know what I find out.
My name is actually Betsey. I'm in the flower business, so daisy-a-day seemed like a fun screen name.
Thanks again for your reply. I am SO glad to have this connection!!

 
Old 07-07-2008, 05:39 AM   #13
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Re: Mycobacterium avium complex (MAC/MAI)

Betsey,

I just looked up achalasia, I see that too is sort of an autoimmune dysfunction of sorts. Just makes me feel this is all connected somehow. Meaning we all seem to have other issues with our immune systems. I did find on the University of Texas site reguarding MAC that (they have been researching MAC for 15+ years) people who DO get MAC may have a defect in the way their lungs developed.

I have discovered the hardest part of this disease is finding a Doctor who actually has a clue about this disease. My first experience with a local Pulmonologist was rather disturbing. When I told him what Mayo clinic had diagnosed me with, he instantly backed away from me, stood across the room and told me if it were up to him he would send me to a ID doctor and have me tested for HIV! I was SHOCKED to say the least! In the end he told me I should "Concider myself married to Mayo clinic", that it was "TOO complex for him to deal with". The man treated me like a Leper! If he had known about the disease he would have known that people who have HIV don't present with having MAC in their lungs, its spread throughout their body(dissimented)(sp) and not in the lungs. I had a hard time when trying to research MAC intionaly, and ALOT of the sites out there DO associate it with HIV. I was just grateful that Mayo clinic knew what their doing, and I happened across the University of Texas site who also have accurate information about it. So finding a Doctor is tough in that reguards. PLUS, I TOO ran across this site when researching, and was SO grateful to find it. It just makes coping somewhat easier when you know your not alone!
Anyway, at this point I have NO local doctor that is treating me. I have to travel 600 miles round trip to have my CT scans to follow all this. My Neurologist is currently TRYING to find a local Pulmonologist who will be my "middle man" so I wont have to travel just for CT scans ect..Still havent gotten any responce in that reguard at this point.

I'm sure interested in what your ID doc will have to say about the digestive issues. Please come back and share!

Take care, and God bless.
ANnette

 
Old 07-07-2008, 06:18 PM   #14
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Re: Mycobacterium avium complex (MAC/MAI)

Hey Betsey, welcome to our little MAC club. Actually, we are all here to help each other and you included. I am so sorry that you are having to join us. First of all, DO NOT take the wait and see approach of your disease. This disease is nothing to play around with and evidently your doctor doesn't know that much about the disease or he would know that you must treat the disease and not wait. Waiting can cause major lung problems. My first recommendation is to call around and see if you can find an ID doc who has lots of MAC patients and treats the disease aggressively.

I noticed you work with plants and soil. This could be how you caught your disease. I have a huge flower garden and lots of house plants. I could have caught the disease from the plants but there is no way of knowing how I caught the disease. Heck, I could have breathed in the bacteria walking thru Lowe's or in my yard. Who Knows??

I have had MAC for 5 years. After the MAC diagnosis, a year later I was diagnosed with Nocardia, bronchiectasis, & Emphysema. The bad thing about MAC is you usually are diagnosed later with other lung diseases attributed to the MAC infection. I have never shown all the symptoms of MAC. I did not have weight loss, rashes, or coughing. The disease can be very dibilatating.


I finally went to the National Jewish Center in Denver after realizing my local doctor did not know how to treat the disease. You need to go to the National Jewish Medical Center website and read about NTM. If you can afford to go to the NJC I would highly recommend it. NJC is the place who got me on the right medication & treatment plan. I took the horrible MAC drugs for over 2 years. I am now on a drug holiday. I have been off the drugs since 08/31/07 so I feel very lucky, although, I am now coughing up yucky looking sputum.

If I can help you in anyway I will & I will gladly answer any questions you may have. Take care. Sharon

 
Old 07-08-2008, 07:44 AM   #15
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Re: Mycobacterium avium complex (MAC/MAI)

Sharon,

Have you called your Doctor yet reguarding the sputum results? I sure hope you find something out soon!

Take care, and God bless.
Annette

 
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