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@ilgrp4e

Quick question. So been back and forth with my mom with her doctors in the meds for Mac. So now they're doing the two week intervals but she just started the Rifampin on Friday and this is the pill that is making her really really sick she lost 3 pounds in 3 days getting fever so I call the nurse and she suggested to stop that pill. So I got to wait for the doctor to call back but I'm guessing that maybe they'll replace that certain pill with maybe it different antibiotic. I'm just a little concerned because I know that these three antibiotics are the ones that work with treating mat so if she gets one switched his it harder and even possible for her to be treated still just wondering if anybody here has had that specific pill replace and his okay on it?
Thx, Carmen

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Replies to "Quick question. So been back and forth with my mom with her doctors in the meds..."

@ilgrp4e .. Carmen, Rifampin frequently creates issues .. exactly WHICH antibiotics is she taking?? Below is what I show as recommended as "Standard". Do you see and 'ALTERNATE"?? Hope some of this helps! Hugs! Katherine

From my File Cabinet:
ANTIBIOTIC ..STANDARD TREATMENT Standard treatment of MAC recommended by the American Thoracic Society (ATS) is a combination of 3 or 4 drugs approved by the Food and Drug Administration (FDA). The drugs include:
Clarithromycin (Biaxin) or Azithromycin (Zithromax)
Rifampin (Rifadin) or Rifabutin (Mycobutin) + Ethambutol (Myambutol)
Streptomycin (Strep) or Amikacin (Amikin)
The first three drugs are pills/capsules and may be given daily or three times weekly (Monday-Wednesday-Friday)

. While taking these medicines, routine laboratory tests to check kidneys and liver along with a complete blood count (CBC) should be performed, at least routinely for the first six months. Patients who fail therapy after taking the 3 standard medicines (clarithromycin/azithromycin, rifampin/rifabutin, and ethambutol) are usually required to take additional medicines (such as injectables or “shots”) which may be effective. For extensive or severe disease, or disease that has failed therapy, the injectables streptomycin or amikacin are often added for the first 2 to 4 months of therapy.

ALSO DID YOU TRY THIS MED SCHEDULING?
SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut - the antibiotics wreak havoc with the gut. This can help with nausea - I take my probiotic with breakfast or lunch - do not take it late in the day. I use Ultra Jarro-Dophilus - 50 billion per capsule - will find in the frig at any health food store - I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts - they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

Thx Pamela- she tried the Azithromycin,
Rifampin and Ethambutol. 1st all 3 then 2 week intervals to see which one was the one making her sick. Rifampin of course. It was not just the common side effects. She had the nausea,diarrhea,rapid breathing ,more coughing,fevers up to 103,uncontrollable shakes,muscle pains that were making her cry, weaknes. Just everything. Her infectious disease Dr said he isn't allowed to replace the rifampinand all he's allowed to prescribe are those 3 antibiotics. I don't gethow that can be if he's an infectious disease Dr who can treat Mac. I just don't like him. He didn't like me asking him many questions and happy to have an appt with cook but it's not till end of July and now my mom has to be on no meds till then. Hope everything goes well in between. I also got the bronchiactisis book and hope after reading it something good will come from it. I had her take but d and also some milk thistle .That should help with her liver. Also on probiatics. All her doctors have said it won't harm her taking all that and my pharmacist friend also scheduled all the meds for her since she also takes Ra meds. Now just have to wait to see cook. Hell spend 2 hours w her so I know he's a good Dr. Looking forward to it.
Carmen

@ilgrp4e .. Carmen, your Mom is SO lucky to have you as a daughter .. a wonderful advocate! Sure hope you get into Dr. Cook with a cancellation .. I was told once it doesn't hurt to call daily (in a very nice way) to ask if a cancellation has come up that you are so worried about your Mother .. that sometimes the "squeaky wheel gets the oil". See how they react if you call daily? Good luck .. we are rooting for you! Hugs! Katherine

<br><br><br><br><br><br><br><br>Call Dr. Cook, at least get his nurse or PA on the phone, I think she should probably be taken off the medications immediately. Waiting list is great, but also<br> ask if he has a PA or colleague who could see her or talk to her in the meantime. She cannot continue to suffer until July. As a last resort, show up at the emergency room, and let them figure it out. Doctors hate to be told what to do, and most of them can<br> only follow protocols established by their institution for patients 1-1890000, they do not treat people, and if you do not fit the protocol to bad. Just went through this. Also do not absolutely do not take the milk thistle it is dangerous in someone that<br> has liver issues. If you want to try herbs see a homeopathic, DO, who is in the same office with an MD, they will combine herbs, vitamins, and minerals with treatments, and medications.  Good luck, sounds like we are in the same fight , wanting a real doctor,<br> who happens to care, and know what they are doing.  No one says she has to be on no meds, if the Rifampin is making her sick, through it in the trash and keep the other two. This is called a cocktail medication, the three, ideally doctors believe the 3 work<br> better together rather than singly or just two. But it is not written in stone.<br> <br><br><br>

@ilgrp4e .. Carmen, none of us here on this Forum are doctors .. I encourage you to get medical advice SOON for your mother but personally with all your mother's health issues I would not personally make medication decisions for her without medical advice .. her situation is too complicated.  I know it is terribly frustrating/AWFUL to watch her suffer but the consequences of guilt if you make medical decisions for her that make her health even worse would be a life long feeling of guilt.  I really feel for you .. I am so sorry.  But think through the consequences  before you make medical prescription decisions for your Mother.  Sending you positive energy and many hugs in this tough time!  Katherine

@ilgrp4e, Hi Carmen, I want to jump into this conversion.
Past experience has taught me that I had to call the doctor office every day and ask about a cancellation. Hint: Be nice, be firm. Also, you can ask to see his nurse, or at least speak with her on the phone now about your mom's current situation. I sincerely hope that your mom gets to see a medical professional soon.
Rosemary