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

@21042, Kathi, thank you SO much for checking .. so glad you are doing so well. I have @pamelasc1 .. Pamela's med schedule in my File Cabinet to recommend in case members are having nauseas issues. So glad it worked for you!

Really like the idea for weight loss: "skim mild, Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that." I am going to put that one in my File Cabinet . good idea! Thanks for letting us know how you are doing .. good to hear from you! Let us know how your appointment goes! Hugs! Katherine

Hello Beatitnow - I have been taking all 3 meds at the same time, 2 hours after I eat dinner... this works for me, but I know staggering the meds can help with certain issues people have... I just found that I had no serious side affects when taking the meds around 10 PM 3 nights a week (Mon, Wed, Friday) I was lucky I guess. I have lost a lot of weight over the last 14 months - early on, I drank Ensure each day just to be sure I was getting some protein. I usually weigh 128 - I am down to 116 and have been steady with that for awhile. I just eat when I feel like it, but overall, I have very little appetite and have to force myself to eat. Hope this helps, Pamela

@chinasmom, Oh Becky, what a trial you have been through! If was sitting in your shoes here is what I would do.
1. Google: St Louis Infectious Disease Doctors
2. Google each doctor .. see where they went to school .. my opinion .. the better school they went to .. the smarter they probably are
3. look for doctors photos (can be years old) that appear young enough to have newer knowledge but old enough to have good experience
4. call their office .. ask for a nurse to call you back .. if they ask why .. tell them you want to know "how many MAC patients has this doctor treated in the past 12 months?" If they don't even know what MAC is .. there is your answer!
5. when you find a doctor who has treated 12 or more MAC patients in the past 12 months .. GET an appointment .. THAT one will know how to treat you!

Now .. Pseudemonis IS a serious bacteria .. BUT Dr. Aksamit told me they do NOT treat it unless there are corresponding symptoms .. ie you get sick like I did. You do NOT start antibiotics UNTIL needed. With all the superbugs out there .. the recommended treatment is NOT to treat Pseudemonis until absolutely necessary. So your doctor is not wrong .. do NOT plead .. ". So im having to plead with him to treat it and he wants to wait to see if im getting sicker then he would know how to treat."

If someone tells you " sputum sample at their lab did not bring any results" .. you just tell them you KNOW results DEPEND UPON WHAT PART OF THE LUNGS THAT PARTICULAR SAMLE CAME FROM!! That is exactly WHY sputum samples are done several times .. to get samples from SEVERAL areas of the lungs! Don't let anyone talk down to you!

YOU are in the driver's seat! If a doctor says to come back and see a student .. YOU can say NO .. I prefer to see a doctor .. and if THEY say NO .. it is time to find a new doctor!! Don' t forget .. YOU are the employer .. the doctor is YOUR employee!! Do NOT let them bamboozle you .. find a doctor that you can communicate with .. is kind and compassionate.

Becky, "@chinasmom, i need some help from the group appealing my insurance for my pain medicine . I've been taking butans a long acting opioid for years. They want to stop payment for any opioid after june related to the addiction and overdose epidemic. Thanks so much for any advice. Becky" .. what are you taking the opioid for? If you let me know I will post this to the appropriate Forum .. our Forum probably doesn't really have the best advice for that .. but If I know your "root" cause maybe I could get you some thoughts? I know in the news there is a LOT about " addiction and overdose epidemic" so doctors are really concerned. Let me know .. and I hope some of my other thoughts might help you? Hugs! Katherine

<br><br><br><br><br>I had the same weight loss issue. I went from 143 lbs to 117 in 14 months. <br>I also had no appetite. I have been on a tobramycin/cipro  antibiotic <br>regimen for six months now. Am feeling better and am putting weight back on. I <br>am now at 124.5 lbs. I drink the Ensure products too. Still low on the energy <br>though.<br> <br><br>

<br><br><br><br><br>So glad to hear that you coming along nicely on your meds and feeling some <br>improvement. <br> <br><br>

I'm a little confused about weight loss. Is the weight loss typically caused by the disease or from the meds decreasing a person's appetite? Just wondering. Jan

Katherine thanks for great advice. Have a great night. Goin to bed, sayin prayers for all of us.
Becky

@colapyrus .. Jan, personally I have never been told by a doctor which it is .. chicken/egg thing .. but I think every single one of has had a weight loss issue .. I personally lost 18% of my body weight . and never really ever gained it all back .. even though I have been MAC "stable" since May 2014. I don't know if it is an age thing .. I am now 73 .. or a carry over .. but I still don't have a big appetite. I still "eat to live" rather than live to eat as my husband says! So my opinion is just don't worry about it .. eat as healthy as you can .. take the good advice of members here on the Forum if you are losing weight .. from my File Cabinet:

Member @21042, Kathi Weight loss: skim mild, Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that.

Member @pamelasc1, Pamela, I drank Ensure each day just to be sure I was getting some protein.

Katherine: I was told because of weight loss to have a protein shake made with yogurt each morning. I was told a good brand was: NOW UNFLAVORED 100% WHEY PROTEIN ISOLATE 10 LB. If you google it you can find where the best price to purchase is. Personally I put about 1/3 yogurt, big scoop of the Now protein powder, a bit of sweetener, fill my WONDERFUL Hamilton Beach Blender the rest of the way to the top with frozen fruit and blend away. (https://smile.amazon.com/Hamilton-Beach-51101BA-Personal-Blender/dp/B00KVZ27UA/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1466295509&sr=1-1&keywords=hamilton+beach+blender )
I get big bags of mixed berries, mangos, pineapple, peaches .. really whatever you like .. but blueberries are really healthy. It is a good way to get that healthy yogurt into your diet.

Hope the above helps just a little bit Jan! Hugs! Katherine

I went from 230 to 170ish (over a year or so) before stabilizing last october. My ID dr said weightloss was one of the indicators of the MAC. But I believe it's also a symptom of restrictive lung disease which I have too. I believe I had loss of appetite before I started any meds for the MAC. I lost another 10lbs in jan when I had rsv and my throat hurt so bad I could barely swallow (ice cream was the only thing that sounded good), but have since gained back 5lbs. I still have times when 'nothing sounds good' and so then I make sure I have an ensure shake. The dietian at the hospital (before finding out I had rsv) was going to put me on 2 ensure shakes a day plus my meals...but I was diagnosed with rsv and sent home.

@jillnc .. Jill, excuse my ignorance .. but I did not know what rsv was so I googled it .. were you diagnosed with: Respiratory Syncytial Virus (RSV) causes cold-like symptoms in adults? Any new information about lungs in great to have on our Forum! Thanks for jumping in on explaining on weight loss .. it helps newer people understand what is going on in their own bodies. Hugs! Katherine