(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@hydrang3a Glad to hear you have ordered the Strepfen, I hope you got a few boxes. Have you lost your voice yet?

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@windwalker

@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.

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@windwalker yes and they also have a kind of neurofen that goes straight to the throat topically as u suck it.

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@hydrang3a

@heathert ….. in addition to a sore throat and loss of voice for s few days on the Arikace trial did you have any other side effects? My upper airways are irritated and feel raw almost like I have sharp razor blades in my lungs. I’ve been on Ariksyce now for 2 weeks. Also did you use a bronchial dialator and nebuluzr saline before each application? Thanks so much… since this drug is so new Doctors don’t have much advice or direction.

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@hydrang3a No I diddnt have those other side effects. I diddnt use anything before taking the Arikace just had a glass of water handy if I coughed. I hope things get better for you soon. Not many doctors know much about this, I had a wonderful dr who had now gone back to the UK unfortunatly. Take care

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@windwalker

@xfirerose, Hi. I read up about CVID. Gosh girl, that is a rough thing to have. I would imagine having to go in for your three week dose of immunoglobins is a pain in the neck, but thank goodness you have it. I was reading about the freaky genetics of it. That it can be a hit or miss thing genetically, and sometimes have the gene but no symptoms or illness. Sounds pretty fickle to me. Are you able to also be on maintenance antibiotics to keep the lung infections (mac & pseudo) at bay?

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I tried the big 3. I did well on the azithromycin. I had vision problems on one drug. I got a bad gastrointestinal infection from the other. So my pulmonologist decided to send me to UCLA for alternative treatment. The MAC is spreading pretty fast now.

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@hydrang3a

@terrim thank you for your reply. I ordered Strepfen from New Zealand. Not made or sold in USA. Also my side effects go beyond sore throat. My upper airways are irritated & inflamed. I’ve been on daily Arikayce for two weeks. Doctors know so little about this drug since it was only marketed in October. I’m relying on info provided by Heather and others who were part of the trial. At this point they are way more informative than any doctor Ive encountered. They simply haven’t had any patients on Arikace before.

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@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for the delivery…wound up having to make trips to two different post offices, no luck and then the postman arrive again at my door and I was home. Pain in neck (being polite
however, the cough drops work. Amazon has a brand called Strephils….not as effective. I know now to order several boxes at a time to save on postage and time. Flib

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@flib

@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for the delivery…wound up having to make trips to two different post offices, no luck and then the postman arrive again at my door and I was home. Pain in neck (being polite
however, the cough drops work. Amazon has a brand called Strephils….not as effective. I know now to order several boxes at a time to save on postage and time. Flib

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@flib I am so pleased they are working for you.

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@windwalker

@jammer Hello. Welcome to our group. I am sorry to hear about your diagnosis. It can be a scary thing; but the more you learn about it; the less scary it is. Unfortunately, Florida is listed as one of the seven 'hot-spots' for mac in our country. I caught mine in Arizona, another hot-spot. Have you had a chance to read about topics on our Discussion Board? It is located on the Mac and Bronchiectasis group home site.There is a post on how people catch mac and then another one on how to avoid infection or re-infection once you are rid of it. If you need help locating that, please let me know. I can tell you this: after you have worked through the natural steps of denial, anger, acceptance, etc. concerning this disease, it will take an attitude 'agreement'. By that, I mean a good mind-set. For me, it was a decision that I was NOT going to be that sick person. (it could be a healthy form of denial). Getting a great doctor is key to treating this infection. In my opinion and that of @alleycatkate, @auntnanny and @america; we think that Mayo Clinic in Jacksonville is THE place to go for the best treatment. How are you feeling now? Are you having many symptoms?

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Yes could you steer me to that page. I thought I caught mine in china in 2009 and now I took a cruise last month again and it is back. Thanks, Ellen

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@windwalker

@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you were also on the immunoglobin therapy. I never took the 'Big 3', my Mayo dr put me on monthly antibiotics. For 10 days one month, I'd take ciprofloxacin, then on alternating months, I'd take doxycycline for ten days. A yr later I tested negative for mac, but stayed on those two meds for two more yrs to keep the mac away. That was in 2013. I test negative to this day.(I was severely ill) Perhaps you can tell my story to your doctor and be sure to tell him\her that this treatment plan came from a Mayo pulmonologist. I want you to mention that because Mayo physicians are highly respected. They are the cream of the crop in medicine. Without knowing your susceptibility test results to treat mac, my exact two antibiotics may not work for you, but perhaps another pair would. The meds are given alternately to prevent resistance.. One more thing, your dr can call your insurance company and/or Medicare and tell them that they need to make an exception for you to go to Mayo due to you having a rare disease. Sometimes, they can get that through. @alleycatkate was able to flip hers and got into the Mayo. Please keep me posted on what they decide for you

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@windwalker Hi Terri, I am new to this group but have MAC and pretty sick at the moment. Thanks so much for your post about the different treatment plan you had. It sounds much better to me. And so good to hear it worked – it has given me some real hope. Yes it does depend on what the little critters are susceptible to. It's great to know a Mayo pulmonologist used this plan, Is there's some way I could find out who your doctor was? Thanks again. Annie
@xfirerose Hi and good luck to you. I hope the kind people in this group can help. Annie

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@anniepie

@windwalker Hi Terri, I am new to this group but have MAC and pretty sick at the moment. Thanks so much for your post about the different treatment plan you had. It sounds much better to me. And so good to hear it worked – it has given me some real hope. Yes it does depend on what the little critters are susceptible to. It's great to know a Mayo pulmonologist used this plan, Is there's some way I could find out who your doctor was? Thanks again. Annie
@xfirerose Hi and good luck to you. I hope the kind people in this group can help. Annie

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@anniepie Hi Annie. I feel weird saying to newcomers; "Welcome to our group." Nobody wants to be in our group; but, here we are. I do not mind at all sharing with you who I see at Mayo. I owe him my life. His name is Dr. Jack Leventhal. He is located at the Mayo in Jacksonville. I feel certain that you could visit any Mayo (there are 3 in the U.S.) and all of their drs are top notch; no matter who you see; you would be in good hands. They only hire the best. I am sorry that you feel so bad right now. With the right treatment, I think you will feel. & get better. I can tell you this; we all need to keep a hard copy of our lab reports. Those reports are so important. You will be able keep track WHEN you were infected, the exact SPECIE of your infection, and a record of your suseptibility test – (what drugs work against your strain of mac.) I also keep a record of travels with that lab file. Of people I have stayed with too in my travels. Why? Because some of my friends and family that I stay with live in older homes and may have molds, etc. in their environment. For example, I picked up a black mold in my lungs after visiting a good friend of mine in Va. She was renting a place that I learned later had a mold remediation issue. My point is, by keeping records, you can pretty much track your active infections and learn where you catch them. Then, you learn how to avoid them. I would like to learn more about what you know so far with your condition; if you are ok with that. That way, I can try to guide you in what you should ask your dr to make sure that you have a knowledgeable and active part in your recovery.

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@windwalker

@anniepie Hi Annie. I feel weird saying to newcomers; "Welcome to our group." Nobody wants to be in our group; but, here we are. I do not mind at all sharing with you who I see at Mayo. I owe him my life. His name is Dr. Jack Leventhal. He is located at the Mayo in Jacksonville. I feel certain that you could visit any Mayo (there are 3 in the U.S.) and all of their drs are top notch; no matter who you see; you would be in good hands. They only hire the best. I am sorry that you feel so bad right now. With the right treatment, I think you will feel. & get better. I can tell you this; we all need to keep a hard copy of our lab reports. Those reports are so important. You will be able keep track WHEN you were infected, the exact SPECIE of your infection, and a record of your suseptibility test – (what drugs work against your strain of mac.) I also keep a record of travels with that lab file. Of people I have stayed with too in my travels. Why? Because some of my friends and family that I stay with live in older homes and may have molds, etc. in their environment. For example, I picked up a black mold in my lungs after visiting a good friend of mine in Va. She was renting a place that I learned later had a mold remediation issue. My point is, by keeping records, you can pretty much track your active infections and learn where you catch them. Then, you learn how to avoid them. I would like to learn more about what you know so far with your condition; if you are ok with that. That way, I can try to guide you in what you should ask your dr to make sure that you have a knowledgeable and active part in your recovery.

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@windwalker Thanks again Terri – it's a precious gift for us newcomers to be helped by someone who has been through it and succeeded. I'm actually in Australia (hi @heathert in NZ). There's not much experience in Australia but I'm at one of only 2 NTM clinics in the country. Here they want to use the standard Big 3 drugs in the ATS protocol with all the toxic risks and sometimes not very good success rates really.

Mayo is respected internationally, Terri. Thanks so much for info about your Mayo doctor. I'd really like to find out if he has treated many MAC/MAI patients successfully with the protocol you mentioned: Antibiotic 1 for 10 days in month 1 and antibiotic 2 for 10 days in month 2, alternating. (If so, I hope he publishes it, I'd like to show my pulmologists here so I can try it). Thanks for explaining you'd been really ill too but succeeded at the 12 month mark. If it's okay, I might write to him at Mayo to find out more about it. I'm very interested.

You asked for my clinical details: I was diagnosed recently with M. Intracellulare MAI by CT scan and 2 positive sputum tests. I have bronchiectasis and recurring MAC/MAI symptoms – lots of fatigue and weakness, fever, lung pains, coughing etc. Unfortunately, my GP/primary doctor and I just discovered that M. Intracellulare was found in a bronchoscopy I had at a different hospital more than 3 years ago but they messed up and didn't send the results to my doctor or me. So I've been left untreated but getting worse for more than 3 years. I've been unable to work for nearly 3 months now — I tried but couldn't make it through a day. I'm older than you Terri, I'm 65, but had previously been working well and planned to continue — a 'young 65' LOL — but now I need to retire. I've got some complications to work around: recurring vasculitis (skin) that needs immunosupressive treatment – not good with NTM. And I'm hypothyroid so some drugs interact with my thyroid meds.

Anyway, my heart goes out to everyone posting on this site and I wish us all the best. This is the best forum group I've found online – the kindest people. Thank you all for your support for all of us. Hugs, Annie

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@windwalker

@america Hi Rita. Keep me posted…..feel better!

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Hi guys, I am still struggling with sore throat and can’t seem to get over this. My daughter who is an RN told me to try a dyflucan because it could be a yeast infection in my throat. I have not heard of this before in the throat but I took one last night. I will see what happens. I am also seeing my Primary Care again tomorrow. It has been a long month for me and hope this is all going to be better soon. Has anyone heard of yeast in the throat? Stay well everyone Rita.

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I have…it's more common than you think…

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