Mycobacterium avium-intracellulare complex (MAC) Need info please

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JORDYSMOM

New member
I originally posted a thread asking about another bacteria that I was told my son had cultured. They got it wrong! Grrrr I know people make mistakes, but it's pretty important to give me the correct culture results. I had them fax it to me, and they even have his middle initial wrong on the paperwork. After double checking all information, unfortunately he cultured MAC.

Any information I can get will be helpful. As I said in my previous thread, they want to treat for 12 months with 3 different medications. I'm looking to hear from others who've been where we are. What meds you treated it with, results, any symptoms you noticed from it, etc. Thanks.

Stacey
 
R

Ratatosk

Administrator
Staff member
Ds hasn't had this; however, I know of a local child who did. Doctors were able to get rid of it. It's my understanding that they need to be very aggressive in treating this in order to prevent damage to the lungs.
 
P

Printer

Active member
Stacey:

One year treatment with the three drugs is standard. I warn you, it is a rough ride. I have grown MAC since 1987 and have been treated with the three drugs two times. A few years ago my CF Doc sent me to see an Infectious Disease Specialist. She finally said "the MAC is not bothering you so lets not bother it". My current CF Doc agrees.

I would STRONGLY suggest a second opinion from an ID Specialist.

Bill
 
4

4hats

New member
Stacey, I am currently being treated for MAC. My CF doctor along with the Infectious disease doctor weighed whether to treat it or not. They took a CT scan to see what effect the MAC was having. They saw some nodules, but nothing too significant. We waited a bit, but I was having recurring problems: infections, low-grade fevers, lethargy, etc....So, we decided to treat it. I'm in my 7th month of treatment now. I take 3 antibiotics for MAC: rifampin (600mg daily), ethambutol (1200 mg daily) and azithromycin (600mg MWF) (dosage subject to weight). I know for many this is a rough cocktail of medicines and I feel for them. However, I have been able to tolerate the treatment fairly well. I drink a ton of water daily, I exercise regularly, I take probiotics every day (40 Billion) and I think all this helps. I've always had a pretty strong stomach, so I am fortunate. The MAC drugs can elevate liver numbers in some. I have to get monthly bloodwork (along with giving monthly sputum samples) to monitor these levels. I've been able to keep these numbers in check with a lot of water and I also take dandelion root and milk thistle which can help keep clean out the liver. Without the milk thistle, my liver numbers were a bit elevated. Also, MAC treatment (ethambutol) can affect your vision. Therefore, I have quarterly eye exams to make sure that all is ok. So far I have had no change in my vision. My eye doctor says that only a very small population would have their vision effected. If that is the case, they say to pause the treatment and re-analyze. Now the good news: since I've started this treatment MAC has not shown up in any culture! I've felt generally better. Before I started my MAC treatment my PFT was 76. I got it as high as 91 and it is currently in the mid 80s. I did see improvement. I understand that this treatment is not absolute, meaning there is the chance that MAC could grow back, but I felt it was worth trying to knock it out of me. This of course is my journey. Others may have a different one. The plan is for me to be on this treatment for a total of about 12 months as well.I hope that this helps you to have insight on what may be involved and I hope you can make the correct decision for your son and that he will feel better for it.
 
P

Printer

Active member
4hats:

Great post. I'm glad that you pointed out that the decision was made by your CF Doctor in consultation with the ID Doctor. I believe that this is critical.

Bill
 
J

Jane

Digital opinion leader
Stacey, I'm sorry to hear this latest news. Mycobacteria is so tough to treat. My boys were told they had one kind before the real one was discovered, which was frustrating.
It took a year or so, with consulation from a variety of Doctors and hospitals to find the appropriate medicine cocktail but we were fortunate to have it irraticated after 6 months.
Ask Joni about her experience at National Jewish in Denver. She is also a great resource!
 
J

justbecauseicannotseeit

New member
I cultured positive for MAC back in March, and was on a combination of three medications (Riffampin, Ethambutol, and Clarithromycin) up until this week. A bronchoscopy in August came back negative for the bacteria, but my doc kept me on the antibiotics for another few months just to be sure. He also told me the treatment could last up to a year, but luckily the medications seemed to do their job within the first six months! For me, the initial diagnosis of it was a bit surprising because I was feeling pretty good when I first cultured positive for it, but they told me it was best to take care of it before it started to cause any serious damage. It wasn't too bad, except for altering my med schedule, and I only took the meds three days a week - Monday, Wednesdays, Fridays. The high dose of antibiotics affected my stomach in the beginning, but lots of Probiotics and yogurt helped calm that down. One warning about Riffampin, though - don't be surprised if it turns your urine bright orange (I'm talking like, orange soda orange). They did warn me about this, and also told me not to wear contact lenses while taking it, because it could turn them orange as well. I just stopped the three meds to switch to IV meds for a little while, since the last culture was negative for MAC and my doc thought that being on the meds too long could result in some negative side-effects. Other than that, I'm feeling pretty great, and antibiotics did their job!
 
D

Deb

Guest
As others have said, it is important to work with your CF doc and also ID. I would also suggest consulting National Jewish. They specialize in this and will work with your doctor to make sure you are being treated properly. You can contact them through their website.
 
B

Bailey Vincent

New member
So glad you posted this question, because I just cultured MAC and was feeling clueless. My pulma doc said I need to culture it 3x before they consider it an infection, and I've cultured it the 2x we tested. Anyone else heard this approach?

I also cultured lots of new pseudomonas and some other kinds of bacteria- yuck. Waiting to hear "the plan" next week. Hoping for home IVs since my success rate with keeping pills down is spotty, but I'm hoping to avoid hospital. I was scheduled for gtube placement this month (which would help administer pills too) but now that's been pushed off because of this : / Sigh
 
S

stephen

Guest
In 1994, 11 years before being diagnosed with CF, I was diagnosed with MAC. (I did have Bronchiectasis, and was running low grade fevers at the time.) Both my Pulmonologist and Infectious Disease doctors recommend that it not be treated. I got multiple other opinions and they concurred. That was the protocal at the time.

Two years later when the fevers got worse, they did decide to treat the MAC with Biaxin and I think Myambutol for 18 months. During this time I felt great! No fevers and much less coughing. When the 18 months were up, I was nervous about what would happen when I stopped taking the antibiotics. However the fevers and coughing did not return for almost two years, and then to a much less degree, and the MAC has not reappeared, thank G-d.


I don't know about the drugs your doctor wants to treat you with, but for me, I had no noticeable adverse affects during the entire 18 month treatment.


For those who are interested, Wikipedia and other web sites have a lot of information about MAC / MAI infections.


PS: Writing this makes me think I should bring this up with my current CF doctor, and with another prominent CF doctor I used to see. Maybe a similar long term treatment would be advisable now, even though I am not currently culturing MAC.
 
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