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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I am NEW to this MAI/MAC "stuff". After nearly 9 months of suffering with what they thought was pneumonia and sinus-related illnesses my family doctor assumed since I was a school teacher I had been tested for TB each year. This is no longer required in the State of AR and when he did a TB test it was positive. I was immediately referred to our State Health Department who sent cultures in and I was diagnoed with MAI/MAC. This stuff is horrible! I began a regimen of 3 drugs 3 times per week and I did fine January & February on Rifampin, Clarithromycin and Ethambutol...still had bouts of nausea and feeling like I had the flu BUT NOTHING like I had when the Pulmonologist changed me from Rifampin to Rifabutin on March 8. I laid in bed screaming with leg/foot/toe cramps, had 6-8 layers of covers and heavy clothing on to keep warm, etc. Finally a week ago I called the Pulmonologist on call who took me off everything. I went in on Monday of this week for blood work and went back on Tuesday to see the APN, who was wonderful. She did a chest x-ray and I now have Acute Bronchitis and I am OFF the 3 meds and taking my last tablet of Levaquin today. Keep in mind...................I am 65 and have NEVER been sick, other than a yearly sinus infection. Now I have been sick for a year! My major question, of course, is how I got this stuff! I know it's from birds, soil, water.....BUT here is the deal. Seeing as though I have never been sick......I was bite by an autistic student at our school in December, 2014. BAD BITE! To the extent that my hand was broken and I have had to have surgery to remove scar tissue, etc. in October of 2015. It just seems "questionable" to me and my family if there is any way this disease could have been caused by this boy's bite. He has very unsanitary habits and he literally tore my hand open and even broken a booth off in my hand. I am at a total loss how I got this horrible stuff. Do you all that have this take Priobiotics, supplements, etc. I am ready to try anything to get well. I have to start up the meds one at a time for a week sometime later this week and I dread this so much! I know that my Pulmonologist says no herbs or herbal drinks while I am on the meds. IF anyone out there can refer me to anyone who might have the answer if this is bite related please respond. I have several nurse friends who are leaning in this direction but my Pulmonologist refused to even listen to me about this being related. Just seems strange that I have never been sick and 4 months after a horrible bite I get deathly ill. I look forward to hearing any comments. Thank you so much! Linda
Replies to "I am NEW to this MAI/MAC "stuff". After nearly 9 months of suffering with what they..."
I have been anxious to read about other people dealing with MAC. I was diagnosed in May, '15. Tried the big 3 twice.... ghastly nauseated...ended up in the hospital. Would love to know more about this disease as my doctor seems clueless. Thanks!<br />
Jan<br />
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Hello Linda @digmeme,
Welcome to this MAC/MAI group. Here's what my pulmonologist told me about contracting MAC/MAI. Yes it's in the air, soil, water. Many people get this, don't know it, and get over it in several days. People with compromised immune systems were getting MAC/MAI in the 1980s and it contributed to their deaths. A new manifestation of MAC/MAI has occurred in the past 15-20 years in thin, middle aged white women, and the medical community does not know why. (Personally, I think it's connected to hormones.) My doc says they've found some correlation to low Vitamin D. As to your bad bite from a child, I can't offer an opinion whether that contributed to your MAC. I do know that when MAC/MAI is not diagnoses early, and is allowed to 'take hold' in your lungs, it gets really difficult to get rid of -- it becomes difficult for antibiotics to penetrate the physical make-up of the bacteria which has a hard outer shell. But the drugs eventually do slow or stop the growth of the bacteria.
I am about your age and rarely ill except for sinus issues since childhood. I am on Rifampin, Ethambutol & Azithromycin -- dosages for my size & weight (120 lbs). Yes, the drugs made me quite nauseous. See my post below to Jan on advice from my pulmonologist on taking the meds. I am not a good person to comment about probiotics, since I have the opposite intestinal effect from the 3 drugs - - they make my system so regular and when I did go off the drugs for 6 months, my system got really screwed up. I took probiotics to no avail.
My computer is down.<br />
I am very interested in sharing with other MAC<br />
persons! I live in Atlanta area and would LOVE to know a good MAC doctor!<br />
Thanks. Jan<br />
<br />
Linda, I am SO sorry you are going through all this! What a rip! Everyone is so different in how this works for their body. Read through the various posts .. you will pick up SO much good information!
For myself, you will read I was on 4-5 antibiotics for 30 months. What I did was rotate 3 different Probiotics DAILY .. I looked for the Probiotic with the MOST billions! By rotating 3 different ones I was able to get various strains of Probiotics. AND in 30 months by doing this I did not get one single yeast infection!
"My major question, of course, is how I got this stuff!"
Linda, I am afraid you will NOT find a "smoking gun" in terms of a cause for MAI/MAC. What I have been told .. I am paraphrasing .. is that because it is a relatively rare disease there is little money for research. Thus they know that mycobacterium is all over our bodies .. in the soil .. in the water .. BUT it is NOT supposed to be in our lungs. BUT couples can garden together for 20 years .. shower in the same water for 20 year .. one will get the disease .. and the other will not. SO .. is there both an environmental AND a genetic factor? My guess is Yes! As we have found with so many other things. But right now we just don't know. If I was you .. I would Just "Put my energy into what I can control .. and let go of what I can't control". ie .. put your energy into getting healthy and not worry about how you got it.
Linda, keep coming back to this forum .. read to gain knowledge as well as support .. there are some good people on the forum .. join us on this shared journey .. we will ALL come out just fine! I have been in remission since May 2015 and am doing just great .. just stay positive and stay happy!
I can vouch for the fact that 2 people who live together and work in the<br />
same environment, one can get the MAC and the other not. Haven't found it<br />
to be genetic. Surprised to see how many people have it. A lot of people<br />
have never heard of it before.<br />
Connect
Welcome to Connect, @digmeme.
I moved your message to this existing thread about MAI/MAC where you'll meet many others who share similar experiences and can help answer your questions.
@katemn @Paula_MAC2007 @maryke @ehliny @johnlk have you got some thoughts about @digmeme's experience?