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

@bevmac I've been coughing for a year and a half now. Do you know the names of those supplements that your doctor gave you that stopped your cough after three days? I haven't had any luck yet stopping mine. Nan (@nannette)

@yayaaz bless you! I could not tolerate the meds. I ordered Broncolin/Propolis all natural honey cough syrup from Amazon. Also
Order Blue Label Clear Lung from Amazon. It stopped my cough. Both are ALL NATURAL !
Do it !

Nannette - 300 mls celery juice - freshly squeezed -30 minutes before food in the morning, SAMe200 (Klaire Lab) - SFI USA Reo NV89521),BicoZn (BioMedica brand), Ultra Flora SB Dysbiosis Control - (Metagenics). I go back every 3 months, my complementary medicine doctor also gets a copy of the blood tests I have monthly. My complementary medicine doctor - also a surgeon is Dr. Elen Apthomas - The Medical Sanctuary - Ashmore Queensland - you will find the Medical Sanctuary online. I had a weird eye thing this morning and looked it up on the net and will contact my lung specialist on Monday - the net suggested it was Kaleidoscopic vision - so maybe a visit to the eye specialist fairly quickly. It has passed within a few hours. 3 months on big three and Dr. Elen changed me to celery juice 40%, beetroot juice 30%, carrot 20 %, lemon 10% - 30 minutes before food in the morning. I take the supplements on days I am not on the big three.

@america, Oh, Rita, that is very sad. Do you know if his IPF was congenita,l or was he exposed to something on the job? That must have been extremely hard for you to watch him struggle towards the end of his disease process.

@auntnanny Hi Jan. How are you doing these days? Are you feeling alright? I too know a woman who went in for regular bronchioscope washings and got better. That reminds me, I need to touch base with her and see of she is still having continued success from that.

Hi Terri! Thanks it was very sad. He lives in our hearts forever. They did a biopsy and said it was idiopathic and and don’t know how he got it. He never smoked so I’m not sure how things just happened. I wish we had more options for IPF and NTM. But for now there’s hope. I hope you’re having some fabulous days. I have had a few not so good days but I am getting back on track. Hugs.

@bevmac Thank you so much!!! I've had two doctors and neither one of them have had any luck with my cough so I'm going to try your doctor's supplements and see what happens! Nan (@nannette)

windwalker -- thank you for asking. I a, trying to do 30 days of toby right now. Just finished my second week. First attempt was not great -- I had trouble breathing and came off in 3 weeks. Waited about a month and want desperately to make it work. So, I'm trying again. There is some MAC in my sputum testing and Mayo doctor says if we can't stop some of the cough and phlegm with toby I may need to do the dreaded course of 3 antibiotics. I'm trying...…. I've lost a little weight and feel weak but at 78 years I assume I won't feel like a teenager. Incidentally, for other's info also, I got my first month's supply of toby at the Mayo pharmacy and they told me they were able to put it through on my Medicare B. It was cost-free to me. This time, I asked doctor to send script to my closer pharmacy -- Walgreens -- and they said they could not get it on Medicare B and they wanted 1100 dollars for a month's supply. I went back to Mayo Pharmacy and they sent it in cost free again. Don't know I this might help anyone but thought I would share the story. I'm happy to answer any questions I can if I can be of help to anyone. I'll be interested in whether your friend is still doing the bronchoscopies (sp).

@bevmac Should would like to know what type of treatment your doctor provided for the cough. My wife coughs terribly until her stomach and side hurt. Cost of the medication is not a problem for us. Thanks for any information your doctor can provide.

spencersok I'm going to post a note here that may or may not be helpful. I coughed day and night for years. Truly thought I was going to die in a coughing spell. Would cause me to vomit, to wet, just the strain of the cough was horrific. I started taking two Benadryl and one hydrocodone (yes, I know it's an opioid ---- but my regular doctor said I would not be addicted with one daily. If I take those three pills after supper, it takes about 60-90 minutes to take effect, but you know..... it 90% stops my coughing and I can get through the night in pretty good shape. I used to have to sit up in bed all night with the coughing but I don't do that now. I've done this for about a year. It may quit working for me, but as long as it does, I'm going to go for it. Of course it doesn't help the daytime but I was just so thankful to be able to get some sleep.