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

@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.

@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.

@heathert ..... in addition to a sore throat and loss of voice for s few days on the Arikace trial did you have any other side effects? My upper airways are irritated and feel raw almost like I have sharp razor blades in my lungs. I’ve been on Ariksyce now for 2 weeks. Also did you use a bronchial dialator and nebuluzr saline before each application? Thanks so much... since this drug is so new Doctors don’t have much advice or direction.

@xfirerose, Hi. I read up about CVID. Gosh girl, that is a rough thing to have. I would imagine having to go in for your three week dose of immunoglobins is a pain in the neck, but thank goodness you have it. I was reading about the freaky genetics of it. That it can be a hit or miss thing genetically, and sometimes have the gene but no symptoms or illness. Sounds pretty fickle to me. Are you able to also be on maintenance antibiotics to keep the lung infections (mac & pseudo) at bay?

@terrim thank you for your reply. I ordered Strepfen from New Zealand. Not made or sold in USA. Also my side effects go beyond sore throat. My upper airways are irritated & inflamed. I’ve been on daily Arikayce for two weeks. Doctors know so little about this drug since it was only marketed in October. I’m relying on info provided by Heather and others who were part of the trial. At this point they are way more informative than any doctor Ive encountered. They simply haven’t had any patients on Arikace before.

@hydrang3e I also ordered from N. Zealand. Took a while.Then I was home to sign for the delivery...wound up having to make trips to two different post offices, no luck and then the postman arrive again at my door and I was home. Pain in neck (being polite
however, the cough drops work. Amazon has a brand called Strephils....not as effective. I know now to order several boxes at a time to save on postage and time. Flib

@jammer Hello. Welcome to our group. I am sorry to hear about your diagnosis. It can be a scary thing; but the more you learn about it; the less scary it is. Unfortunately, Florida is listed as one of the seven 'hot-spots' for mac in our country. I caught mine in Arizona, another hot-spot. Have you had a chance to read about topics on our Discussion Board? It is located on the Mac and Bronchiectasis group home site.There is a post on how people catch mac and then another one on how to avoid infection or re-infection once you are rid of it. If you need help locating that, please let me know. I can tell you this: after you have worked through the natural steps of denial, anger, acceptance, etc. concerning this disease, it will take an attitude 'agreement'. By that, I mean a good mind-set. For me, it was a decision that I was NOT going to be that sick person. (it could be a healthy form of denial). Getting a great doctor is key to treating this infection. In my opinion and that of @alleycatkate, @auntnanny and @america; we think that Mayo Clinic in Jacksonville is THE place to go for the best treatment. How are you feeling now? Are you having many symptoms?

@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you were also on the immunoglobin therapy. I never took the 'Big 3', my Mayo dr put me on monthly antibiotics. For 10 days one month, I'd take ciprofloxacin, then on alternating months, I'd take doxycycline for ten days. A yr later I tested negative for mac, but stayed on those two meds for two more yrs to keep the mac away. That was in 2013. I test negative to this day.(I was severely ill) Perhaps you can tell my story to your doctor and be sure to tell him\her that this treatment plan came from a Mayo pulmonologist. I want you to mention that because Mayo physicians are highly respected. They are the cream of the crop in medicine. Without knowing your susceptibility test results to treat mac, my exact two antibiotics may not work for you, but perhaps another pair would. The meds are given alternately to prevent resistance.. One more thing, your dr can call your insurance company and/or Medicare and tell them that they need to make an exception for you to go to Mayo due to you having a rare disease. Sometimes, they can get that through. @alleycatkate was able to flip hers and got into the Mayo. Please keep me posted on what they decide for you

@windwalker Hi Terri, I am new to this group but have MAC and pretty sick at the moment. Thanks so much for your post about the different treatment plan you had. It sounds much better to me. And so good to hear it worked - it has given me some real hope. Yes it does depend on what the little critters are susceptible to. It's great to know a Mayo pulmonologist used this plan, Is there's some way I could find out who your doctor was? Thanks again. Annie
@xfirerose Hi and good luck to you. I hope the kind people in this group can help. Annie