Thx.. I am new here and just started to figure out to check on the notifications. 😉
Yes I stopped her meds and no more side effects. Going to Dr. In the am.

@ilgrp4e .. Carmen, SO glad you stopped the meds and your Mom is better! Tomorrow be your Mom's BEST ADVOCATE! Take what you have learned here and stand up for her! Print everything out so you have it in your hands! There is NO good reason he told you just to take her to the ER! YOU are in the driver's seat! You tell HIM what/how you want the meds scheduled! Remember YOU are the EMPLOYER .. HE is the employee! You are taking good care of your Mom .. you just continue to do so! Good luck! Hugs to you both! Katherine

@ilgrp4e .. Carmen .. when you get an email .. just go to the bottom and hit "View & Reply" .. it takes a few seconds to cycle .. but it will then take you to the proper post. Hugs! Katherine

Carmen, i was so scared for your mom and relieved this morning that she's alright. Take good care of you and your mom. Becky

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

@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

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