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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY...............yesterday.....................answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds.......high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils.......I wasn't either......had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours......I am amazed...........and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it's horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds.....he did not even mention the main 3 that everyone takes.............he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So..................if you question your doctor.....................go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes.....everyone is going to, but I am not going to die from MAI/MAC...............and I truly thought it was killing me! Hope this helps!
Replies to "I have been dealing with this since it was finally diagnosed January 2016. I began the..."
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.......
thanks Paula, good to know you can stay on the same antibiotics for so long without becoming immune, I have MAI in both lungs all lobes so quite advanced,nodules with cavities, I read that yours was advanced also, I have only been put on the big 3, 3 days a week but wondering if I should be daily, I have just started on the inhaled amakacin trial so hoping that will help. Hope they sort out your 2 new cavities pretty quickly. Thank you so much for your information. I hope they create some new antibiotics soon instead of revamping the old ones.Take care
Hi sophie1019, I have been on the 3 meds 3 days a week for around 17mths, and am just starting on Amakacin inhaled, there was some improvement on my last scan and I have another scan in Aug. My eyes are fine and apart from some ringing in my ears(not bad)my hearing is fine, I know the meds are a worry but I think they are worth it, my biggest problem with them is GERD but had a bit of that before the meds, and tiredness which gets better with time. I hope all goes well for you,please keep us updated on your progress, all the best.
Sophie, are you taking Ethambutol? It can affect your color vision and visual acuity. Don't assume your mind is playing tricks on you.
Hopefully you had a baseline vision test done prior to starting your meds? If I was sitting in your shoes I would get a vision test ASAP. I was taken off the Ethambutol and my vision returned to normal. Don't want to concern you but just do your "due diligence". Sending you a hug! Katherine
Hello Heathert, I also have Gerd for which I take a daily Aciphex .. but I have also found it very helpful to raise the head of my bed 4-5 inches .. you can get bed raisers. A simple way to do it is:
https://smile.amazon.com/Home--Adjustable-Bed-Riser-Set/dp/B00MH74S16/ref=sr_1_2?ie=UTF8&qid=1469667638&sr=8-2&keywords=dorm+raisers
Hope you find that helpful! Katherine
Yes I am taking ethambutol. I have had my baseline vision test and my eyes are okay, so far......
I've been on the big three 3 days a week for six months now. Going to have a CT on Monday to see if treatment is helping. My last scan was in December which showed more nodules and scarring <br><br>
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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!