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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@laneyk Elaine, thanks for the info! The person with the MacBook found the heart .. thanks!
You are right on about that med .. my notes say:
Taking 4 antibiotic pills prescribed (such as Ethambutol) at a time. Per both doctor and pharmacist re dividing dosage .. both checked the literature and found no permission to do this. They said a drug needs to hit the bloodstream at full strength. A weak dose may not knock out the bacteria and let it morph into a different bacteria that resists the medicine. Hugs to you! Katherine
Totally agree with you boomerexpert on using nebulized medications for Mac. Since the infection is in your lungs makes sense to treat it more locally instead of antibiotics through the whole body.
Interesting I also have RA ....Will check with my pulmonologist when I see him on the connection.
I have had two sputum cultures positive for Mac abcsesses but not on any medications yet still waiting for the third sputum.
Hi @del,
If your diagnosis MAC or bronchiectasis related, then simply click REPLY and post your message for community members to comment on. If your diagnosis is not Lung Health related, then please choose a group from this list https://connect.mayoclinic.org/groups/ and start a discussion.
To get more tips on how to use Connect, see this link https://connect.mayoclinic.org/get-started-on-connect/
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1 ReactionCheck w/both pulmo and rheumo
Absolutely. Mine is a pulmo who specializes in MAC so I don't need ID...but must be a doc who specializes in the disease...it's far too serious to be handled by just any doc who knows not what s/he is doing... Unfortunately, as we see here, too many are in over their heads yet won't admit it...
I agree completely! We need to get the MAC word out so more is known about it.
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1 ReactionMy local ID doctor, who so far as not proven herself to be that knowledgeable, has told me that I am in the 1% category of patients on azithromycin who has tachycardia, insomnia, nervousness, and possibly some high blood pressure as side effects. She further stated that the only drug to be used in lieu of azithromycin is clarithromycin but that also has the mentioned side effects in 1-10% of the patient population. Anyone else have this problem or have knowledge about the absolute necessity of having either azithromycin or clarithromycin as part of the antibiotic cocktail? Anybody's cocktail not contain either of those two? Were other drugs substituted for azithromycin other than the clarithromycin? Always can take anti-anxiety medication for the nervousness and tachycardia but really haven't come up with any good plan to medicate the insomnia away or at least cause it to be more tolerable. Words of advice would be greatly appreciated. Disheartening. So great to be able to reach out. Thanks for the forum to vent. It helps.Terry
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1 ReactionMy "kind" ID gal (will be leaving her as soon as I find a much more suitable replacement) added salt to the wound. She called me and knowing that I have rare reaction to azithromycin, said that the only other drug that could be used in lieu of that was clarithromycin ... then said "oh no but it has similar side effects". This compelled me to write my last message about looking for others in the same predicament. Got off the phone and was down and out, but then morphed into a female Ralph Kramden and wanted to send the ID gal on her own trip to the moon! It is amazing how insensitive someone could be. She had no problem leaving off that my option was between bad and worse (my interpretation of what her words translated to). "To the moon, Alice!"Terry "The Honeymooners" is still one of the greatest shows ever but then I date myself.
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1 Reaction@128128terry11t, Terry, sorry you are going through this!
I can only speak for myself .. but I would do ZERO about changing meds UNTIL you get to a good Infectious Disease doctor who treats MAC! You need someone knowledgeable about MAC before you start fooling around with changes. I ALSO took various meds in addition to my antibiotics. I found a GOOD pharmacist and worked with HER (always find a smart female .. sorry!) and my IFD to work out a schedule that worked for me with my current meds PLUS the antibiotics. Some with/without empty stomach .. some hours away from vitamins etc.
In terms of sleep .. sorry but I have come to the conclusion it is partly age? But ALSO if you are taking Rifampin .. be SURE to take it first thing in the morning on an empty stomach. It is KNOWN for sleep disturbance.
SLEEP DISTURBANCE I can only speak for myself .. but I also have sleep disturbance .. and it has continued even after going off the antibiotics .. I am now "stable". As I have posted I really don't know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn't really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use: a. ONE TwinLab Magnesium 400mg tab
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1484004326&sr=1-1&keywords=twinlabs%2Bmagnesium%2Bcaps&th=1b. plus 1/2 tablet (tab no the gel) of Unisom .. an over the counter Sleep Aid tab (I purchase the generic brand blue one that I can bite in half) .. AND WOW! I am able to get to sleep plus get back to sleep when I frequently wake up at night! The TwinLab tabs have really helped me .. can't say they would for you .. but do be aware they will result in looser stools! I no longer need to take Fibercon 2x per day!
PLEASE others jump in with any other thoughts! Hugs! Katherine
@pfists, I also have abscessus .. it is ' MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES'. It is one of the tougher mycobacteriums to deal with. I can only speak for myself but for this particular one my antibiotic treatment was:
* Azithromycin 250mg/Amikacin 2ML-inhaled/Avelox 400mg.
If I was sitting in your shoes with TWO sputum cultures positive for Mac abcsesses .. I would stay on this like a dog with a bone!! Get on the meds earlier rather than later. Questions I would be asking .. Is your Pulmonologist an Infectious Disease doctor and how many MAC patients have they treated in the past 12 months.
MAC abscessus is not anything to fool with .. you can see from my above treatment .. that is WHY I did an INALED/NEBULIZED Amikacin .. to knock out the MAC abscessus. Just my opinion .. good luck to you! Keep us posted! Hugs! Katherine