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

@flib it would be a good idea to share meal menu as a vegan with all of us. Do you have a balance diet with alkaline and acid.  Do you have a lot of sugar?  We must also watch sugar. It is a sweet poison very acid. I eat small pieces as a treat once an a while.

Milk and ice cream is high in sugar hello mucus if i ate too much! So now I am very very moderate on acid food.  I am like windwalker when I have acid food my tongue burns so now I eat much less acid food.  I cook all my food to avoid the sugar etc.  I know

what I eat! Nick

@nick52 So you have the burning tongue too?!! Mine is driving me nuts. From what I have read, chronic disease and inflammation causes the ph to be more acidic. I think that is why my tongue burns. I have coated it with a thin layer of baking soda. It calms it for a short while. Watermelon is also soothing. What do you do?

@windwalker I do not have this all the time. I have what they call a geographic tongue and there is nothing to do about it.  I have done a lot of reading and find a graphic with all the organ points on the tongue.  (Like liver, colon, heart etc) I know all

the food that will make my tongue burned like fat, sugar, (even baked chips) wine,any alcohol, ice cream (very bad) salt. Gravy and most acid food, so I am trying to stay away from it as much as possible.  When I eat some I am aware why my tongue burns so

I drink more cold water or ice cube to take away the burning if it is bad. i agree with you that it is agrevating but One doctor in California gave me the diagnostic when I went to his office for a sore throat.  I have done a lot of research and question every

doctor I have seen since then and they all told me the same thing. It is not dangerous it is aggravating only.  Now I do not bother about the tongue anymore.  I know if I eat an ice cream I will suffer if I make the choice. I found the best ice cream fir my

tongue is the MacDonald one. It is made with skim milk I was told.  It doesn’t burn as much lol. I do cheat but very moderately.  The place on my tongue that was the worst was the liver so I treat my liver with MILK THISTLE but not the pills. They don’t work

the same as the brown liquid from Hübner the one my nutritional doctor prescribe me.  It helps!  Since I am taking Dr Ohirra’s probiotic my tongue doesn’t burn much anymore. Terri I think it is the best treatment I had tried so far.  I also cook all my food.

I buy nothing made at the store.  I was looking to meet you last winter in Florida but we bought another house so we had to move etc.  Very busy! I hope next winter. We have a chance to sit and chat. Are you far from the highway to Florida .  We go through

NC and SC. Nick

@nick52 No. I am not too far off of I-95. Maybe 15 miles. Thank you for the info. Those same foods make my tongue burn also. I will have to order the probiotics. I am at a loss as to what to eat as my diet was mainly the acid diet. I will tire of just cooked vegetables and fruit

I have to tell you, I think if I had to do it over, I would have asked them to start treating me earlier with the Big Three and not waited until more and worse changes showed on the CT. For some reason, I think it would have protected the areas that had not yet been affected. My CT done last week showed slight improvement after treatment with 6 months of the medications. I have to be glad it was not ongoing worsening but I guess I hoped for more improvement. My Pulmonologist tells me it takes a long time for things to improve or show improvement. So I wish I would have treated it when the changes were a bit more subtle and got it earlier.

I had a reaction to Rifabutin early on as well. Terrible aches. I had to take Rifampin, Azithromycin and Ethambutol

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

Hey @soflo take some time to look through the posts here...you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far....I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc...if s/he won't do anything but the big 3, find another doc.

@ boomerexpert, Thank you for stepping up to answer @soflo. I hope that you are doing alright.

@soflo, Hello Dee, welcome to our Connect group. I certainly understand your fear from your diagnosis. Keep in mind that much of what you read when you Google any info is either out-dated or has out-dated thoughts on how to treat mac. My doctor believes that automatically putting people on the 'Big 3' is overkill unless they have many colonies growing and cavities forming in the lungs. He put me on two lighter antibiotics with no side effects for me. My pulmonologosts is with the Mayo Clinic which is a research clinic and hospital. They are world-renown and well respected. Please read over my past posts and you will get a lot of info. If you click on my picture; all of my posts will come up. I was diagnosed 13 yrs ago with MAC and had pseudomonas and another black fungus crop up a ew yrs ago. I coughed non-stop for years, couldn't walk 20 ft., and was pre-qualified for a double lung transplant 2 yrs ago. Today, I can ride my bicycle 12 miles, I can walk many blocks (level ground) without being out of breath. I still have bronchiectasis, get short of breath with strenuous exercise, or going up stairs; and I still suffer unrelenting fatigue. Overall, my quality of life has greatly improved. Most patients with mac; also have bronchiectasis. Do you know if you have that as well?