New Diagnosis of MAC/MAI & I'm scared

@sueinoregon First let me say “welcome to this site.” Like you I was in an emotional place about this diagnosis, especially since I, like you, have other things going on as well. This site will give you so much good informative and support. I have been so grateful for that and for the friendships I have made through this empathetic and knowledgeable forum. Because of that I am in a stronger psychological place than I was before finding this site. Each of us have our own personal journey with MAC. Attitude is everything Sue. We are all here for you, and if you go back and read previous posts you will find lots of answers. Our previous and present mentor and many members have been extremely helpful in providing good and helpful information and support about this disease. Welcome! (Irene5 from Connecticut)

@sueinoregon Keep plugging Sue. I am also from Oregon, (Lincoln County) Sounds to me like you have enough diagnoses to push for a dX of some disorder that would trigger all these things, probably an autoimmune something or other. There are some things you can be pretty sure of. It is Systemic (whole body), Primary (not triggered by something else like radon, etc.), At your age, 61, you are just getting into the years when these diseases are typically catching up with you. Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. Now, I am not sure but I could easily guess some form of Amyloidosis Light Chain such as Crohn's, Lupus, AL, Gelsolin (mine). (https://bit.Ly/1w7j4j8 under "Amyloid". There are a couple thousand in this category. Mayo-Rochester (Dr. Martha Grogan) or Stanford can help you most. Martha Grogan has done some wonderful videos on diagnosis of Amyloidosis, and they are free. Watch several of them, and you will surely get some great leads. Your doc will need to start with the SERUM FreeLightChain(c)Bindings and have ARUP in Salt Lake City analyze it. They are probably the best in the West. If your reading is >1.5 milligrams protein per deciliter of serum, you are seriously on the right track. if less than .5 mG/dL, protein is not the issue.

@sueinoregon
Hello Sue and wellcome to this board my name is Shari.
I am so sorry for the health trials you have been going through. I know how really hard it is to deal with receiving news like that.
I believe it helps a lot to talk with others that are going through the same things or have been through some of the same trials. Also on this board you will learn so much about this disease, treatments and about how we can also be overcomers.
There are others on here on the board with RA I am one of them. I also had to go on SS disability for the RA a number of years ago. I was also on a biological immune suppressant drug 7 years ago but that wasn't when I was diagnosed with MAC but was diagnosed with Pseudomonas which had gone on for months before I got in to see a pulminologist.
The pulmonologist then took me off the immunological suppressing drug for RA immediately. I have been doing very well for 7 years with the RA while being on two different drugs to treat it that don't suppress my immune system. One is minocycline three times a week the other is plaquenil.
I also have been testing negative for Mycobacterium Abcessus for a year and a half now. I had tested positive for one year prior and did not do the antibiotics but a number of alternative treatments.
There is hope you can get through this. You need to get the best Doctors working for you. Some others here didn't take antibiotics some rotate one antibiotic for one week every month and some have or are taking the antibiotics.
Also there are some treatments coming on the scene that are easier like nebulized antibiotics or inhaled nitric oxide to name a couple.
Hang in there we are here for you!
Shari

@sueinoregon...hi there...when I first got my diagnosis, I was scared, and still am sometimes...what helps is getting as much information from this support group that u can to empower yourself to understand your treatment options...I felt sad at times, and still do, at times...it’s part of a grieving process, when u lose your health to chronic disease...it’s normal...everyone will have it to various degrees, depending on what u r battling, length of time, and your support systems...having s good therapist will certainly help with the journey, good friends, exercise, meditation etc....you are dealing with slot...if it wasn’t for this support group, and especially Terry, our volunteer mentor, I don’t think I would be doing as well emotionally.... Day at a time❤️

Hi sueinoregon, I understand what you’re saying. I am 63, and was diagnosed 4 years ago. It is hard to deal with so much that’s going on but time goes by and it gets a little better as you go. I too have Sjogren’s and RA and MAC. Is there anyway that you can find a Mayo Clinic close to you? I can tell you of the great experience I had with doc at Mayo. I was for Four years struggling with all this same stuff until I went Jacksonville Mayo Clinic. The doctors know exactly how to treat this disease. When I first got diagnosed I took the big 3 also, after six months I got really sick and had to stop, I did not used any meds until now which I’ll be starting an inhaled antibiotics in my nebulizer and chloride sodium. I feel so good about this new treatment that it makes me excited and I feel like I’ll be able to get to a place where I can live my life again. So hang in there, there’s always help and you are in this wonderful group that filled with great people who’s always there for you. I would have never found Mayo on my own. I hope and pray that you will have good health.

tinaesims I have had bronchiectasis for many years (I'm sure) but was finally diagnosed at Mayo's three years ago. I had just a bit of MAC but the pulmonologist there told me most everyone has some. He went on to say he might have too -- he doesn't know -- because he's had no reason to find out. He says unless it increases, we won't worry about it. Just thought I would share what little I know about slight cases of MAC. Perhaps he's wrong -- but that's what I was told.

Thank you!

I was just diagnosed but it is not severe so we are just doing the Aerobika for 6 months and then another scat scan. I’ve had-bronchiectasis for 10 years. I will try anything not to be on the medications. The internet is scaring me. I read about a form of vitamin D to try. What is it and what dosage?

Hi @tinaesims, I'd like to add my welcome to @auntnanny's. I moved your messages to this discussion so you could also meet @sueinoregon who was also diagnosed with MAC. It is a scary time, but you'll find much support and incredible information from the members of this group.

Here are a few discussions that I recommend reading (and joining in):
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
- You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
- Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/
- NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

I encourage you to browse through all the discussions. See a list of all of them here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

Keep asking questions and then ask some more.

Posted by @onana

in reply to @tinaesims
Hi, I just began the three drug treatment on Monday. I can't say I'm not a bit frightened to go ahead with it, but the idea of killing this infection (MAC) and halting the damage to my lungs is very appealing, and this forum has given me the courage to go forward. Reading the support of others is the antidote to all the scary stuff on the internet. Stick with the forum and be your own advocate. About vitamin D...I take 2000 IU's daily of liquid form D-3 to boost my immune system. I don't know if it really helps but I'm willing to try. Good luck with your 6 month treatment!
Olivia in California