MAC/NTM is Different for Everyone, Treatment might be different too

Hi Sue & “Family”!
I find this support group gives me valuable resources, knowledge, strength, & hope.
We all come into this disease(s) scared, confused, overwhelmed but acceptance crushes a lot of
Pain/grief. Everyone IS different which makes it even harder to navigate our new normal. However, knowing there is a place where you are not Alone and can ask questions, get advice, hear other experiences- is truly the essence of support. So personally, I am grateful for all of you!!
Blesssings,
Dee

I agree with you. People with MAC/NTM should not scare people with their own drug experiences in such negative ways. It's okay to say this or that drug didn't work for you, but we are all individuals with different needs and being positive through this Mayo outlet is a wonderful way to help people with similar, not necessarily identical, symptoms. We all need positive support.

People who respond the way they do in negative ways only increase the stress levels of others who may or may not have the same reactions. We need to follow the doctor's suggestions and see how we (you, in particular) feel overall, which may be far better than imagined. Doctors are doing the best they can at this point in medicine, sometimes with limited knowledge, and there is no pat solution because of the individual differences.

I become concerned about some of the connect.Mayo writers and their reactions to their personal experiences. This is a horrible disease and it does sometimes require us to seek outside help, like therapy, to see us through. I've been there and know how helpful one-on-one therapy is and, although I find the information I read online helpful to a degree, it should never be the answer to an individual health issue.

Thank you, Sue. This is a great reminder to keep calm and stay focused on treating our chronic illness with fact-based, medically-accepted care. It is very reassuring to me, personally, to know there are so many other people in this same boat and to see how many different options there are for treatment. Stay well!

The most helpful suggestions are strategies to cope with drug side effects, handling fear that comes with diagnosis and ways to stay upbeat and ward off depression. I’ve been on the big 3 for one month and can’t believe I’ve got so far to go. So far still feeling very sick from the MAC. I was told that it takes 2 to 3 to months to begin to see improvement. Was that y’all’s experience? Also, thanks for the discussion on weight loss. That’s a problem for me as well and would love to hear more food ideas to put on weight and counteract the queasiness of the antibiotics. One last question-my doctor says she won’t do another sputum culture until after 6 months and when (if) I get a negative culture I’ll need another year of antibiotics. Is that what most of you have experienced?
I’m very sad to be a part of this community but I’m thankful to have you all to help me through it.

MJ

Am a retired mental health therapist, overwhelmed with info, have rare lentiflavin microbacteria. I reached out to gp as I felt the need to have a fiend in Prozac. Helps with anxiety. I am trying to find pulmonary doc to keep me well with airway clearance, saline, diet and exercise. No meds as no nodules or holes! United Health care wanted $150 dollars for saline, will use Good Rx for $18.00. Lesson learned try discount cards.

Oh yes, Squire, we all learn to "go with the flow" - I happen to have a wizard of a pharmacist, but not everyone is so fortunate.
Where are you located? - maybe someone here has insight on finding the right pulmonologist or ID doc.
Sue

Ponte Vedra Beach, just way south of Jacksonville. Mayo Clinic still overwhelmed with excovid patients, can't get an apt. Going to a Baptist health provider on Thursday. Fingers crossed.

Hi MaryJane!
The first few months were rough for me on the Big 3.
I lost a lot of weight initially but holding steady @ 105 now( 13 months on treatment). I found that taking meds at night helped with nausea and other side effects. I also started morning fruit smoothies which helped with weight gain. I also take probiotics every morning which helps!
The 6 month sputum culture is standard. If you obtain culture conversion -(No NTM detectable) at that juncture, the clock starts and you are one year from that point. I attained in November of last year.
I hope this helps!
Dee

Good morning! This group has been so encouraging to me. Thanks to this group I have started nebulizing with saline. I have learned different methods of airway clearance. I have read two recommended books on how to approach this condition with a good attitude and incorporate medical treatment, exercise, diet, laughter/fun and other treatments like acupuncture. I just had my first acupuncture treatment. I have learned to accept this diagnosis and now view it as part of my life and not the defining thing in my life. I am not on antibiotics yet, but I have come to understand that I most likely will be on them at some point. I know when that time comes I will find the support of this group to as invaluable as it has been this far.

I have more peace about this diagnosis than I have had since I learned of it. Part of that peace comes from knowing that I have a community who will give me sound advice. Thank you for reminding us all of our responsibility to each other.

Now I need some of that sound advice. 🥰 I have only had one sputum culture (September 30, 2022). Nothing grew in the culture. My pulmonologist hasn’t suggested another culture. Should I request one? I had a CT in May of this year and things seem stable. I’m still waiting to hear from Dr. McShane at UT Tyler for an appointment. I know if she accepts me as a patient I can’t get into see her until next March unless there is a cancellation. I’m praying that I can see her sooner rather than later.

I think it is important that we discuss the side effects of the potent pharmaceuticals we are on.
Many of the side effects can affect 5-40% of patients. Side effects can put you in the ER. ER Dr are not educated on these type of drugs. Pulminologists are not available for emergency calls. I know this first hand.