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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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
- 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!
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The ones I had were as you described. I would wake up drenched to the point of having to change everything, self and bed linens. While on medicines last winter, I felt cold during the daytime. As far having to treat so long, that sound reasonable. Having experience with radiation treatments, occupational, the new baby cells were affected and easier killed than mature cells.
Elaine K
Hi Kay, interesting theory! But frankly I would hold judgment until I heard it from my Pulmonologist rather than even a good eye doctor. I am seeing Dr. Aksamit in November .. will try to remember to ask him then .. will get back to everyone with an answer then. Hugs! Katherine
Hi Terri, actually it is the REVERSE .. it is more like diarrhea now .. VERY loose stools! I had previously used calcium citrate for bone health .. because I had read the same thing and never had this issue .. just diarrhea with this particular calcium. But since it helps me sleep I am quite willing to deal with it!
With this years annual check up I was told I was .1 away from Osteoporosis .. had been told I had Osteopenia for quite some time .. I am slim etc .. so I have been taking Evista for that. BUT I am also high risk breast cancer so Evista is good for that also .. so Evista is really doing double duty for me by taking it daily.
To avoid constipate I had been taking Fibercon twice a day .. that had been taking care of it .. now with the TwinLab MAGNESIUM CAPS 400mg.. I do NOT have any issues at all! Man, if it isn't one thing .. it's another isn't it! Oh well .. minor problem! Thanks for the heads up! Hugs! Katherine
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1 ReactionYes of course Katherine, the eye doc was just talking about Mycobacteria relative to other bacteria, and would love to know if what he says is true. Seems it would be explained scientifically on the Internet somewhere? If it's true, it seems meds shoukd work with the bacteria that reproduce slowly rather than say a pneumonia. I'm taking the same Med I took when I had a sinus infection.
Thanks for letting us know if you find out.
Kay Strand
Kathryn, both my son and grandson are teachers .. so I know how it is both taxing .. AND a joy it can be! So rewarding to know what an impact you are having on lives. Funny enough .. my grandson (from an entirely different part of the state) is now teaching at the same school that his Uncle is teaching. AND my grandson has fallen in love with a woman who says his Uncle was her FAVORITE TEACHER in grade school!! Is that a kick!! Our family is just getting such a kick out of it! She says our son was such an inspiration to her that she never forgot him .. fifth grade. So you just never know what an impact you are having on lives .. you can be so proud of your chosen profession. I am very proud of my two! Hugs to you! Katherine
Hi Kay, I have a terrible memory .. but I think I remember reading somewhere that the reason for the "cocktail" of antibiotics is because mycobacterium has kind of a hard shell that must be penetrated by one of them prior to the others being able to be effective .. very complicated those darn mycobacterium! I guess that is why is so serious when they become super bugs and resistant! I just wrote myself a note .. I really will try to remember and back to everyone because it is interesting! Katherine
I'm feeling much better after about 3 weeks. The shortness of breath and pressure on my chest is much better. I stop taking my cholesterol meds. and the anxiety pills that my PCP prescribe. I find out the pravastatin generic for Pravachol is interact with R. The acid reflux got worst with anxiety pills. I learned that every meds that my Dr. prescribe to check if they will not interact on the meds that I'm currently taking. I think even though you tell them the meds your taking they don't read all of it. They just give you what they think it will make you feel better. My appetite, I forced my self to eat even though the food doesn't taste good. I don't want to loose weigh anymore. Thank you all for your caring and I pray for all of us in this forum. Cila
Cila, you are SO totally .. absolutely correct!! Nowadays doctors are under SO much time pressure I think they just write prescriptions .. PLUS I tell my two granddaughters that in my opinion .. doctors have had SO little pharmaceutical education in med school .. that I want them to "make friends" .. get to know a female pharmacist at their pharmacy! AND anytime their doctor prescribes a new med .. call their female pharmacist and ASK their opinion .. based on their medical record at the ONE PHARMACY they buy their meds at .. IF there are any interactions with other meds they are taking .. IF there is a generic available (because older meds have a better proven track record than newer drugs PLUS being cheaper) .. IS there an med alternative that might work better. Frankly I fear sometimes that some doctors just prescribe whatever the latest pharmaceutical rep happens to be pushing lately. Hate to sound jaded .. but I've seen it happen .. I have a dear friend in the industry.
That said .. I take my current med list to EVERY medical appointment .. and again .. you MUST be your own best advocate! Also .. I can ONLY speak for myself .. but based on my reading about statins .. I have made the personal decision to make sure my cholesterol stays at a good level but pace taking my statins at that level .. which is NOT a daily statin. BUT note the latest research which is showing the big benefits of statins to the heart health .. I would be concerned about you not taking your cholesterol meds for very long. You might take a look at:
http://www.utswmedicine.org/stories/articles/year-2016/statins-answers.html for further info.
Maybe check into a different cholesterol med that does NOT interact?
Good for you that you are doing your best to keep your weight up! When my husband was ill I bought him Ensure .. he liked the chocolate when it was chilled in the refrigerator .. or just eat whatever you can .. keep your energy up! Be kind to yourself! Sending you a Hug! Katherine
Before I was diagnosed I had 1 night sweat and now 4 months of MAC meds I get hot all the time. I use to be a cold nature person not anymore, its like going through menopause again. I'm not sure if is from MAC or the side effect of the 3 meds.
Hi, Katherine. I went to my GP and she did an EKG, etc. and does not seem worried about my heart. I also had my appointment with the Infectious Disease Specialist today and he seemed really good - answered my questions and wants to discuss things with my respiratory specialist before doing anything. He is querying MAC and indicated because I don't have much sputum, that I may have to get a bronchoscope. I am really really fearful of that...I don't even like the feeling of freezing when i get dental work, so don't know how I will make it through that procedure, even with drugs! Is there any other way to test for MAC? blood or stool for example? I am lucky, too that I got into a cancellation appointment with the respiratory specialist tomorrow, instead of waiting until Nov 4th. But really really concerned about the potential bronchoscope. 🙁