(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@maryjo2sell Mary Jo, I can totally relate to your situation and frustration. I was in your shoes for years and years, coughing and hacking up thick mucous on daily basis. It was driving my husband and myself crazy. I'm always very nervous about going to a big meeting or a movie theatre and having an uncontrollable fit of hacking. That was before I was diagnosed for bronchiectasis & MAC. Since I had had a lot of allergies, we thought treating my allergies would stop all this nonsense. So I went on a 5-year allergy shot treatment which did reduce my coughing tremendously. But the thick mucous remained stubbornly and has been making me wanting to clear my throat constantly (that led to me eventually catching MAC). So the irritation is still there every single day. But after my bronchiectasis & MAC diagnosis, my husband has learned from my pulmonary doctor and from his own Internet search that the effort to clear out the mucous is actually helping with my situation. If we keep suppressing the effort due to fear of embarrassment, the accumulated mucous in our lungs will be a hot bed to trap bacteria in. He is now very conscientious about reminding me to do my thing (coughing and hacking up my mucous, especially in the morning). Fortunately, after the allergy shot treatment, I don't have much need to cough and the throat clearing is no longer very loud. But the memory of nightmarish long years of feeling disgusted of myself is still fresh. I'm hoping you can find the Chinese products that will help you with your problem. But you need to remember, thinning the mucous may be OK. but if the products only serve to suppress your urge to cough up mucous, please think twice about using them because you absolutely do not want the mucous to remain in your lungs. MAC/MAI is nicknamed Lady Windermere Syndrome for a reason. This article explains it: https://well.blogs.nytimes.com/2013/06/07/think-like-a-doctor-a-cough-solved/?_r=0

When you first submit your post, there is a button that says something like manage your post. When you click on it, you have the option of editing your submitted post. But I think after you have closed the browser, that option goes away. When you go back to your previous post when you close and re-open the page, the button is no longer there. For me, if I don't remember to re-read my post, I will try to re-read it immediately after I have posted and use the button to edit it if I discover mistakes.

@katemn and @contentandwell Thanks to you both for sharing your stories of migraines - that is so helpful to realize that not every "medicine cocktail", if you will, will work for everyone. This points to the need to keep working with your medical professional and searching for the right combination of meds. Being proactive here is so vital! Teresa

I work with a highly skilled practitioner of Oriental Medicine, trained by Chinese masters in Europe; her acupuncture helps both my lungs and RA, I use the salt room for my lungs, and she gave me a special blend designed for the lungs, very strong; Traditional Lung QI Release Zhi Sou San. It's so strong that I need only 5-6 drops in tea (usually 30 drops). I must be better about taking it daily because it helps greatly.

@hopeful33250 Teresa, call me a cynic or whatever but these days I think the local PCPs are just not as diligent as they used to be, at least mine is not but I think he was 3 years ago when I first started seeing him! Now it's just a job, they work for the hospitals and they are not as invested in their patients as doctors were/are in private practice. I sometimes feel like I have to explain some things to my doctor that he should know! I know I complain a lot about him but finding someone else is so difficult here. I really do need to do that soon. I would like to have a doctor who cares about my well-being and is responsive to me -- I put a message on the portal three weeks ago and he has still not gotten back to me. I think I will post it again today.
JK

I just googled Lung Qi Release Zhi Sou San. I found multiple sources of it. But it seems to suggest the medication is for helping with coughing and phlegm caused by cold. Zhi Sou in Chinese means cough stopping. I'm a bit worried about using it to just stop the coughs. Will it simply suppresses coughs or does it help with expelling phlegm from our lungs? What is the difference between this Chinese medication and the run-of-the-mill cough syrup?

@ling123, Ling , THANK YOU for stating this information SO well! We so frequently get so frustrated with our disease .. it's many aspects .. especially the mucus. You have stated so succinctly just why/what/where we MUST respect the process of our bodies .. and NOT get frustrated nor get lazy with our necessary lung clearance/hygiene methods. Your post will find a nice spot in my File Cabinet! Frankly even I needed this kick in the seat of the pants .. it DOES get tiresome the 2x a day . . 2 inhalers .. then 20 to 30 minutes of lung clearance. BUT you put it so well .. respect and care for our bodies .. so our bodies can take care of us! Again, thank you! Hugs to you! Katherine

@maryjo2sell, Mary Jo, we travel with Levaquin .. so from my File Cabinet! Hugs! Katherine

LEVAQUIN
Take levofloxacin with a full glass of water (8 ounces). Drink several extra glasses of fluid each day while you are taking levofloxacin. You may take levofloxacin tablets with or without food. Take levofloxacin oral solution (liquid) on an empty stomach 1 hour before or 2 hours after meals.
Levaquin (Levofloxacin) Patient Information: Side Effects and Drug ...
http://www.rxlist.com/levaquin-drug/patient-images-side-effects.htm

Levaquin may interact with:
Antacids, multivitamins, and supplements containing magnesium, aluminum, iron, or zinc.
Sucralfate (Carafate)
Didanosine (Videx)
Warfarin (Coumadin, Jantoven)
Antidiabetic medicine.
Non-steroidal anti-inflammatory drugs, including aspirin and ibuprofen.
Theophylline (Theo-24, Theolair)
Levaquin (Levofloxacin) - Side Effects, Dosage, Interactions - Drugs
http://www.everydayhealth.com/drugs/levaquin

@katemn Thanks for the complement, Katherine. You are the one who has taught us that knowledge is our best weapon against our medical problems. A lot of times, people are not doing the right things to help their own situation because they don't know what the right things are and usually resort to what they assume is the right thing to do. If it is just for something not so serious, not much harm done. But the problem that we are all sharing on this site is serious enough that we need to try to do as many right things as we possibly can. Like many of the posters on this site have stated, doctors may or may not even know enough to help us. So we must use this site as a tool to try to help each other out if we can. Information from the Internet may or may not be accurate, or even correct. So we must, first of all, understand our disease(s) as much as possible in order to use this understanding as basis to decipher the information we obtain from the Internet or any other source. I admit, I do get lazy a lot of times myself and frustrated enough to not want to be vigilant and mindful ALL THE TIME. But also catch myself asking: our body is our castle. If we don't do our best to defend it, who will?

@contentandwell, JK .. SOOOO wrong not to get an answer in THREE WEEKS! At Mayo Clinic AND at the U of MN I get an answer within 24 to 48 hours .. I am so sorry! Hugs to you! Katherine