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Aug 17, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Katherine, I just posted a long winded reply to Kay regarding my journey with MAC. Have to agree with you, Due Diligence and recognizing the signals your body sends you is vital. Thank you for all your support and good information.

Aug 17, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Kay, in answer to your question. And by the way…sorry for the delay in response, but I work long hours and haven’t the time to check in often.

Once the drugs were out of my system, the Rifampin was replaced with Levofloxacin 750 MG (in my opinion equivalent to
RAT POISON). I was kept on Ethambutol and Azithromycin. This lasted about a month and a half. The (L) drug affected affected my joints starting with my knees, spreading to my hands. I was in constant pain and could barely walk or get out of bed. If I sat on the floor, I wasn’t able to get up without assistance. Being new to this drug business once again I let it go too far before unequivocally telling my pulmonologist that he had to take me off the Levofloxacin. I was frightened about the long term effect of this drug & seriously thought I might end up in a wheelchair. It worried me to the point that I went to see a internist who practises integrated medicine in addition to running a Cancer Center. My pulmonologist is very knowledgable about MAC, but his focus is on eliminating the disease, he seems to be not as concerned about the side effects. Which is why I ended up in the internist’s office.

Dr Mehta the internist explained that he works as a adjacent to my primary Dr & proceeded to give me a list of supplements to take, such as Host Defense/ My Community Mushrooms (Immune Support), Ginger, Vitamin C 500 MG, Fish Oil tabs 1100 MG, VSL#3 Probiotic. He also had me sign up at the Wellness Center for Yoga Classes and has me doing breathing exercises at home by following a yoga video on You Tube and drinking tons of water to flush out the system.

Once I was off the Levofloxacin my drugs were reduced to Ethambutol 400 MG & Azithromycin 600 MG. Within two weeks my knees & muscles were feeling better and I had mobility again. This lasted for a few weeks and then I had another set-back with hives again. This time they were very itchy and difficult to get rid of. Dr Hull attributed them to the Azithromycin and took me off drugs for 10 days. Now I’m on the Ethambutol and Clarithromycin 500 MG.

So far so good. Dr. tells me I’m running out of drug options. Right now I feel healthy, no coughing or weakness. I walk almost every day. Take yoga 2-3 times a week, work out in the gym and participate in boxing class. My husband and I recently went Zip-Lining in the Carolina’s. 11 Zips and 3 rappels, more physical than I expected, but I held up well.

Staying active seems to be the key for me & modifying as needed. I will not allow this disease to change my life-style or depress me, though at times it has seemed insurmountable. You have to roll with it and find the options that work best for you. Stay strong and speak up if something doesn’t seem right, I had to learn that lesson the hard way. Kay, I wish you all the best, be well.

Aug 11, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

When I was first diagnosed with MAC in February 2016 I was put on a cocktail of three drugs, Rifampin was one of them. By the second day my throat had closed up, making it almost impossible to eat. Shortly after that fatigue had set in and my ability to think clearly was impaired. I spent the next three weeks barely moving off the couch. At the end of this period I broke out in hives so severe they covered my entire body. I despaired that this would be the new normal for me. The hives actually saved me, as the situation was so bad my pulmonologist pulled me off all drugs for 2 weeks till the hives disappeared. As soon as the Rifampin was out of my system, my head cleared and I could eat. I lost six pounds during that time.

Apr 11, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you for your response Tutti. My situation is similar to yours, I had started coughing up blood, other than that I felt healthy. The meds have completely depleted my energy level, not to mention all foods now taste salty making it difficult to eat much or keep it down. The hives have spread to every inch of me, except my face. Thank you for that.
I’m seeing my pulmonologist today and plan on asking for a reduction or at least spacing the meds out to three days a week. I understand that some people are able to do that. I wish you the best with this, it came as a shock to me also. Do I understand that your Dr did not immediately start you on the drugs. If thats the case, I’d like to hear more about it.
Would like to find a support group in the South Florida area, feeling pretty isolated right now.

Apr 10, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I’m having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I’ve always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

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