In reply to @cila "Sophie, do feel hot at night? I noticed since I started the meds I hot all..." + (show)- (hide)
Elaine | @laneyk | Jul 18, 2016
I was diagnosed with MAC in May of 2015. From reading other posts, I did not have the same symptoms as others did. I had been feeling really bad for several months. Coughing was not a problem, although my husband said I coughed a great deal during the night. I was having night sweats and they were increasing and would wake up with headache around sinus area. Finally went to Dr. Since nothing else contributory he treated me for sinus infection.. Returned next week or two when that did not help. Did sinus x-rays. Negative. One week later began running fever and feeling worse. Went back to doctor and white count elevated. To determine cause of elevated white count did chest x-Ray was done showing an apple sized area of infection. Sent to hospital for IV antibiotics. Referred to pulmonologist. TB ruled out after week in isolation. No resolution from IV antibiotic after 10 days. PICC line put in and sent home to continue IV therapy. Oxygen used around the clock. Saw doctor for the next 6 weeks with no improvement. On the last day I saw this particular Doctor he accidentally saw the culture report from when I was in the hospital and mentioned it too me. I don’t know why but he did not start MAC treatment. I googled MAC and when i I saw the recommended treatment and knew that I had not been on any of the recommended meds, I saw my primary dr and requested he may new referral. MAC treatment was started and the first month there was remarkably improvement on chest x-Ray which continued for several months. Negative sputum for MAC after 3 months. My chest x-Ray will always have scarring. I have been on the 3 antibiotics now for 13 months everyday. Soon to end. I have not felt that great, but I have not felt as bad as I was afraid I might. I just keep going and try to make the best of it. After about 6 months I was able to get off the oxygen and resumed an almost normal life. I just pace myself and am grateful that this disease is curable. I hope this will encourage someone else. Do the treatment. I failed to mention that I lost a lot of weight as I had no appetite at the beginning. Appetite returned somewhat and have regained a little weight. During all of this, 4 days out of the hospital, my husband passed away unexpectedly. It’s been a hard year and a half. Expecting better times soon.
Thanks boomerexpert for that article, I see they say that the pink scum bacteria (methylobacterium) and ntm do not coexist, can they not get us to inhale lots of methylobacterium to kill off the ntm? I wish it was that easy!
I may have underestimated my pulmonologist, as he has set me up with an appointment to see a new infectious disease doctor that has just come into our area. I will see him on Aug 2.
One of the antibiotics can cause eye problems, even blindness. So you do need to see an ophthalmologist yearly. Also, another of the drugs causes hearing loss – it’s thought when you stop the drugs, that your hearing will return. I have hearing loss in my left ear. But I’ve been on the drugs for about 8 years so I don’t expect hearing to return to that ear. However, I CAN BREATHE and do feel a lot better after being correctly diagnosed, going on the meds, and following my pulmonologist’s recommendations about exercise and rest. I’m doing great today. If I don’t tell someone, they would have no idea that I have NTM or MAC, am on the 3 drugs, or that’s why I make it a point to do Pilates or gentle Yoga 5 times a week. I’m not one of those people into exercise … but it DOES make a big difference.
Hi Paula great to hear you are feeling good, have you been on the same 3 antibiotics for 8 years or have you become resistant to some and then changed and if so how many times in 8 years? Is your hearing loss really bad or just a little?looks like I will be on the antibiotics for the long haul .Thanks for your help.
Since you have been on for such a long time, how is your eyesight? Do you get your eyes checked every three months? My doctor did a baseline and my eyes are fine. I have to go every three months to have them checked. I have not noticed any hearing loss but i have only been on meds for one month. I hope and pray that you continue to do well and hopefully you can come off soon. Since i have been taking the meds i notice that i breathe better but i still have a chronic cough…. please respond. Thank you.
Hello Heathert,
I’ve posted on here a lot with my experience with NTM or MAC. But to answer your questions …
I’ve been on the same 3 antibiotics since 2007, although in different dosages and days of the week.
– For the first 2 years, I took the drugs every day. My pulmonologist then left to practice in Florida.
– My new pulmonologist – who is fabulous, at a teaching hospital, & knows a lot about NTM or MAC – lowered the dosage of one drug. (The 3 drugs are prescribed based on your height & weight, and he felt the quantity for one wasn’t right.) I continued to take the 3 drugs each day. I’ve also been prescribed VitaminD – – 50,000 IUs one day a week, 5,000 IUs the other days. My Vit-D was exceedingly low.
– After 4-5 years and doing great, I was going out of the country on vacation and wanted to stop the drugs. I was symptom-free. So I negotiated with my doc and stopped the drugs. 3-4 months later, the coughing & mucus came back and I got really sick. I was off the drugs a total of 6 months, and then my doc and I decided I needed to resume taking them . . . but this time I only take the 3 drugs on Mon/Wed/Fri. This has worked very well the past 3+ years. However, I learned several months ago that while 2 areas with NTM in my lung have ‘receded’ (my word, I can’t recall the word(s) my pulmonologist used), I have 2 new cavities that weren’t there two years ago on a CAT scan. Now I’m back seeing my doc every 3-4 months. But I am feeling OK this summer. Had a difficult Jan-April 2016 with a bad batch of the NTM drugs that made me nauseous.
As far as we know, I have not gotten immune to any of the 3 drugs . . . BUT there is always that chance.
If you read thru some of the postings here, you’ll find a real wealth of information. Hang in there!
Hi Heather how are you doing and how long have you been on meds? Have you noticed any eye/hearing problems???
My ophthalmologist (for 25 years) knew about NTM or MAC when I went to him with my diagnosis. He had one patient who had to stop the drugs due to sight issues. My eyes are fine, I saw my ophthalmologist every 6 months for the first 2 years and now only once a year.
The hearing loss from one of the drugs is due to flattening of the hairs in the inner ear; it’s thought when the drug is stopped, the flattening stops & hearing returns. My hearing loss is not that bad … one on one discussions I am fine. But eventually I think a hearing aid will be needed for this ear.
Your cough should go away after being on the drugs for awhile. After a year or so, I began to feel like my old self. I really have no complaints today. Life is really good, and NTM or MAC doesn’t define me . . . very few people know I have the disease.
Thanks for such a quick response. I am so glad you are doing okay. I feel really good too, and the disease will not define me either. When i first started on the meds i had diarrhea, but not anymore. I do the self color blindness test which you czn find as an app in your smartphone or computer. My lung doc suggestec i download and take the test several times a month to keep check on my eyes… lets keep in touch…….