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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 was just diagnosed today, 5.24.16, with MAC. Your blog is the first thing I've read on the internet and wanted to join. I was sooo relieved to hear I have something treatable and curable at the Dr office today I about started to cry. I've had high fevers at night for over a year now. Weight loss for about a year now, coughing for over a year, shortness of breath at times, just can't believe how many of my symptoms the Dr rattled off that I have. The way I was diagnosed is strange too. The beginning of April I went to my regular Dr and said there is something wrong with me we need to get to the bottom of it. I also had hand/wrist, upper arm pain. Anyway, I was tested and sent to an RA Dr and a hematologist. My regular Dr found I have Hashimoto's thyroiditis and the other two did some blood work and found out I have sjogren's syndrome. The hematologist did a CT scan to rule out lymphoma, but they saw things in my lungs so she sent me to an infectious disease Dr who found the MAC. He is going to put me on 3 antibotics everyday he said until I get a clear test, then it will be 12 months after that that I will be able to stop the meds. He warned me that one can cause urine, saliva and tears to turn orange, some nausa, and could effect the liver so they'd keep an eye on that. He said the other two are tolerated pretty well. I've been reading on here about taking vitamin D. I called my reg Dr to see if she thought there were any issues with me taking that daily, so waiting to hear. I'm hoping and praying I tolerate the antibotics well and get back closer to the way I used to be. I'm curious though and forgot to ask the ID Dr, once 'cured' is this something that can be gotten again? or is it like a virius where once you have it you build up immunities against it? Also I see a lot of people saying exercise is a good, which I don't do. I have so many questions, but I don't think of them all at once and I'm just on overdrive right now thinking I'll get rid of my fevers hopefully (they'd gotten as high as 103.5 if I didn't catch them and take tylenol). I look forward to learning more about this and reading more of your blog. Thank you for starting it!
Replies to "I was just diagnosed today, 5.24.16, with MAC. Your blog is the first thing I've read..."
I am glad you found this blog. It is reassuring to be able to share symptoms, difficulties and help each other with solutions. I had difficulties initially with the antibiotics, lots of acidity, regurgitation. I found that dividing the dose between two meals helped a lot. Also, be sure to take a good quality probiotic on a daily basis. Ask your pharmacist what he recommends. I take one that is used to avoid colitis, it has a much higher microorganism count and a variety of species of good bacteria. The best kind is kept refrigerated by the pharmacist. And yes...having orange urine is startling indeed.
Best of luck to you. Sounds like you are in good hands.
Jill, you are not alone. We all stand with you. Many times I felt that the friends here know better what I am going thru than my own family. I hope you will draw strength from here. I am so thankful that we have person like Kate who has gone thru the process and is holding our hands by sharing her experience with us.
Kate, I am doing kefir everyday. Is it enough? Do I need to take probiotics pills also? Why you rotated the probiotics?
FYI, I am exercising everyday now. Thanks for sharing that piece of information.
Ana
Thank you for your support everyone. I did ask the pharmacist which probiotic they recommended and it's florastor, so took that today as today I started the antibiotics. Took the R one in the morning after breakfast and that seemed to go okay. Urine was definitely pumpkin orange LOL i took the Arizmothisyn (I know I'm not spelling it correctly...its pink), and the E one after dinner. Feeling nausea (or hungry can't tell) with these so I took a florastor to see if it would help and didn't notice any difference yet. So I ate a small baggie of dry cheerios as that has helped with a nausea feeling before, felt better while I was eating, but now don't feel good again. So tomorrow I was thinking of separating the two at dinner time and taking the pink one at lunch and the E one after dinner as I think it's that one causing the nausea. I also don't know if I need to give my body time to get used to the meds or if I should call the Dr back tomorrow after only having taken them 1 day, but I know I can not put up with this nausea for over the next year or however long. I also seemed to get really hot this afternoon and this evening, so I took 2 tylenol and put on lighter weight clothig and that's seemed to have helped a little. Thanks for the support ladies...it does help.
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@jillnc
Hello Jill?, I am SOOOO glad you found our Forum!! When I was first diagnosed in 2007 I felt I had absolutely NO WHERE to turn and it was SO scary! That is why I wrote that first post in 2011 .. I just NEVER wanted anyone to feel as alone as I had felt when I was diagnosed! Trust me .. here on this Forum .. you will NEVER be alone again! We are ALL on this journey together! I am sending you a Big Hug right now!
Now down to business! Knowledge is Power! Start reading all the posts back to page 1 .. you will learn SO much about your disease! As you read all the posts .. start a list of questions! One list for your doctors .. maybe some questions we can help you with right away. Remember NO ONE cares about your body as much as YOU do .. YOU are responsible for it! DO your “Due Diligence!” Educate yourself! Remember the saying “Put your energy into what you can control .. and let go of what you can’t control!” You CAN control educating yourself .. getting as much exercise as you can to keep your body and your lungs as healthy as possible .. eat healthy .. and get enough sleep. These things you CAN control. What you CANNOT control is where this disease is going to take you .. let that go.
You will read from the posts .. No, MAI/MAC cannot be “cured” .. it can only be “stabilized” .. that is why it is important to keep our bodies as healthy as possible .. but there is no guarantee there will not be a recurrence.
Again, we are all sending you positive energy and remember .. we ARE all on this shared journey!