Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!
If you have the “MS Word” program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for - As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal “file cabinet” on MAC/MAI! Go to it!
KateMN
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
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@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.
Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine
@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
pamelasc
@pamelasc1
@pamelasc1
Posts: 109
Joined: Feb 25, 2016
@pamelasc1 and @katemn and EVERYONE WELCOME FOR COMMENTS, Thank you for all the information. I have saved it…thank you, thank you. Just to clarify….you took ALL your pills in one sitting before you went to bed? I am taking pills 3 days a week, so for two drugs 2 pills a day, the other is actually 12 pills a day (my pharmacy did not carry the higher mg dosage for the ethambutol. When I talked to the Walgreens pharmicist, she suggested taking the rifampin on its own a minimum of 2 hours before or after other drugs and on an empty stomach. What do you think?
IF ANYONE would like to jump in and tell me how they successfully took their medicine please do. I will “try my best” to look back at previous reviews before tomorrow, but I am starting to get a little stressed because I was thinking about starting the drugs tomorrow, Monday….I have to see how comfortable I feel. (I had been planning on T, Th, Sa), but then I thought maybe I should just do M,W,F’s. Ughh….this is nerve wrecking! :/ Thank you for your help.
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
Liked by Katherine, Alumni Mentor
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing’s wrong w her. I’m sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I’m freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks
@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
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Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4144
Joined: Nov 18, 2016
@pamelasc1 and @katemn and EVERYONE WELCOME FOR COMMENTS, Thank you for all the information. I have saved it…thank you, thank you. Just to clarify….you took ALL your pills in one sitting before you went to bed? I am taking pills 3 days a week, so for two drugs 2 pills a day, the other is actually 12 pills a day (my pharmacy did not carry the higher mg dosage for the ethambutol. When I talked to the Walgreens pharmicist, she suggested taking the rifampin on its own a minimum of 2 hours before or after other drugs and on an empty stomach. What do you think?
IF ANYONE would like to jump in and tell me how they successfully took their medicine please do. I will “try my best” to look back at previous reviews before tomorrow, but I am starting to get a little stressed because I was thinking about starting the drugs tomorrow, Monday….I have to see how comfortable I feel. (I had been planning on T, Th, Sa), but then I thought maybe I should just do M,W,F’s. Ughh….this is nerve wrecking! :/ Thank you for your help.
I had the same weight loss issue. I went from 143 lbs to 117 in 14 months.
I also had no appetite. I have been on a tobramycin/cipro antibiotic
regimen for six months now. Am feeling better and am putting weight back on. I
am now at 124.5 lbs. I drink the Ensure products too. Still low on the energy
though.
Liked by Katherine, Alumni Mentor
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4144
Joined: Nov 18, 2016
Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.
Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine
So glad to hear that you coming along nicely on your meds and feeling some
improvement.
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colapyrus
@colapyrus
@colapyrus
Posts: 18
Joined: Jan 04, 2017
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
Liked by Katherine, Alumni Mentor
chinasmom
@chinasmom
@chinasmom
Posts: 99
Joined: Sep 11, 2016
So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing’s wrong w her. I’m sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I’m freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks
Katherine thanks for great advice. Have a great night. Goin to bed, sayin prayers for all of us.
Becky
Liked by Katherine, Alumni Mentor
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@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
jillnc
@jillnc
@jillnc
Posts: 45
Joined: May 24, 2016
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.
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@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
irene5 Irene Estes
@irene5
@irene5
Posts: 630
Joined: Oct 03, 2016
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
Well Jan here is my take on weight loss. That is how I basically was diagnosed. I dropped 18% of my weight just like Katherine wrote once about herself. I am fortunate to have a doctor in the family who was very concerned about that plus I had no appetite and had all I could do to make it through the day with my lovely first graders. He sent me for a CT scan and the rest is history! So for me the weight loss came before meds. Irene
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colapyrus
@colapyrus
@colapyrus
Posts: 18
Joined: Jan 04, 2017
@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
Thanks for the reply. I haven’t had the weight loss problem yet but I’ll be prepared if/when I do. I like the protein shake with yogurt and fruit idea. It seems to cover multiple issues at once. Jan
Liked by Katherine, Alumni Mentor
jillnc
@jillnc
@jillnc
Posts: 45
Joined: May 24, 2016
@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
Yes. Sorry I forget sometimes people don’t know the letters. It is more common in kids under 2 than in adults. Most adults I’ve told said they didn’t even know adults could get it. I didn’t feel I had issues breathing, my throat just hurt so bad I couldn’t stand it anymore and because of all my other issues I figured an er/hospital was better equipped than an urgent care. Of course they don’t treat rsv in adults so they sent me home as I was feeling better than when I had come in too.
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beatitnow
@beatitnow
@beatitnow
Posts: 51
Joined: Feb 25, 2017
@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
@colapyrus….I have not looked back to double check, but are you new to taking the 3 meds for MAC? I am too. I started drug number 1 this week. I hope I don’t lose weight…I can’t afford it. Thanks for asking more questions about that. Feel free to tag me with any questions or comments. 🙂 Thanks! Amy
Liked by Katherine, Alumni Mentor
@chinasmom
Katherine and the group, i need some help. I was diagnosed with bronchiectasis in May 2014. I had a culture come back with mac last November but there was suspected MAC by a radiologist in his ct report. I’m sure I’ve had both before a proper diagnosis was made. My first pulmonologist was the best I could have hoped for but he had to go to isreal to be with his family. I’ve had another that just left the practice. I had a positive sweat test so they sent me to Washington University C.F. clinic but further testing showed no cf gene mutation. They agreed to keep treating me there but i felt my care wasn’t a priority for them. I had moderate pseudomonis and moderate staph from a culture at the other hospital and i faxed them the results and requsted treatment. They didnt want to treat because the sputum sample at their lab did not bring any results. I had told them all along that there was nothing in the cup that it was the middle of the day and i was too dry to get anything. My nurse practioner treated with levaquin for three weeks. That same culture was the one that MAC showed up in so i was started on the big three 3 times wkly. I was reading things in the forum about ID doctors so I found an Infectious disease doctor at st.louis university hospital. She first said she doughted i had MAC and ordered 4 weely sputum tests and changed my meds to daily she handed me off to a student with communication difficulties and said come back in 3 months to see the student. So still looking for good care i went to a pulmonologist at st. Luke’s and he did the same. The last sputum culture and sensitivity he ordered came back with moderate amount pseudomonis aureus. 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. He is not doing monthly anything. He ordered a ct and return in may. So i need a doctor who is treating MAC in the St. Louis Missouri area. Im open to suggestions on how to get the doctor to treat my secondary pseudomonis infection. Also need help applealing my insurace for my pain medicine . Ive been taking butans a long acting opiod for years. They want to stop payment for any opiod after june related to the addiction and overdose epidemic. Thanks so much for any advice.
Becky
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