MAC antibiotics and side effects

Posted by reneeg @reneeg, Oct 15, 2016

Hello. My name is Renee and I live in Australia with my husband who was diagnosed with MAC in Sept 2014. At the same time he was also diagnosed with Hodgkins Lymphoma, COPD and hereditary emphysema. He also has adrenal failure we’re told from the chemo. He is currently in hospital on a iv antibiotic drip of tigecyline and oral antibiotics. My question for those of you that have taken rifubutin and moxifloxcin. How long did your side effects last? Did they ever diminish or completely go away? One of the reasons he is in hospital is due to the severeness of his side effects. Constant headache, muscle aches, body temp regulation and shortness of breath. He has been on the tablets now for a 4 weeks. Thank you!!

@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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If you are under 65 you can apply for disability. You can also start SS. The baseline eye exam is just what you would get when you have your eyes checked – including dilation. What they mostly want is a color blind test. In Tennessee I wasn’t allowed to drive (hey that might be cause for disability)because one of the meds may cause a change in what you see (ex. A green light when it is really red.) I am ok to drive in Connecticut and haven’t had a change in my eyesight. Walmart should be able to accommodate you. Good luck!

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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You can apply for, and eventually receive SSDI once your doc says you can no longer manage “gainful employment” as a result of whatever it is…a chronic lung infection is probably one of the illnesses covered. Best way to find it is to first ask you doc about your level of function and if s/he agrees that you are permanently disabled. If the answer is yes, see a SSDisability attorney who will take your case only if s/he believes you have one that will eventually win as they work on contingency. Worth a shot!

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@irene5, thank you so much for your information of the entire eye exam. I don’t think my ID Dr. Has ever had a MAC patient. He told me to have a eye exam and I did. He then removed me off Ethambutol due to the terriable problem of not being able to breath with out nearly passing out and losing total control of my bladder during all this. He told me to also have another eye test to see if my eyes were effected and I asked him exactly what he was looking for with this test and I don’t think he truly knew because he said I need the eye Dr to tell me if your eyes have changed. This print out he gave me says I should have a “funduscopy photograph done periodically. Did anyone else have this type of photography done on your eye exam?

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@boomerexpert, thank you for all your information.

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@carla1196 , have you had a spirometric breathig test? If the results show that you fall within a certain level, it is easy to get disability.

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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I’ve tried to comment back to you on this, but for some reason it is not going through.

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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My pleasure! I think just the funduscopy is sufficient since it is a “baseline.” That is done with every eye exam, and they write it down. In subsequent exams they would be able to tell if there are changes. You can download the color blindness app to use and check yourself periodically. This disease is so NOT a “walk in the park.” Hugs.

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@carla1196, Hi Carla. Is it possible for you to find a doctor who has treated 5 or more patients with mac? You really need a doctor who is experienced with treating this disease. It is nothing to play with. You also need a good Infectious Disease doctor.

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@irene5
Thank you for this information. Turns out the eye Dr at Walmart does not have machine for a funduscopy. Guess a new eye Dr is needed. Thank you for this information. Much appreciated

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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I wondered about that. The ID doctor in Tennessee insisted I go to an opthamologist and not an optometrist which is probably who they have at Walmart. Sorry about that. Because the eye exam was recommended by a doctor I paid nothing for it. Hope the same for you!

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@irene5
My biggest problem is I have no health insurance. I really do not think my ID Dr really knows what the eye Dr is dining and that is why he printed the type of eye exam I need for me to figure it out? Glad to know I am on the right track now. Thank you again

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@windwalker
I would like be to see a ID Dr who has had more experience for sure. My problem is that I have no health insurance and so I am lucky to have the Dr’s I have because of the no insurance.

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@carla1196 fully concur with Terri…that’s two Terri’s who’d like to see you find the best care!

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@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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Just came across this and wonder what the Emory doctor has suggested. Many Thanks

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@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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I was diagnosed with mac bronchiectasis nine years ago when I was seventy-three. I chose not to go on the antibiotics. I had five very good years before really feeling the effects of the disease. Only one of the antibiotics, azithromiazine , responded to testing. I was on it for five months and did feel better, gained a little weight and had better energy. However, I was losing hearing in my left ear. My pulmonary doctor took me off it immediately as she judged it was a side effect of the antibiotic. I think I made a good choice for my life. I know that some folks on this site encourage hanging in and going through the side effects but for some they are quite damaging. It's an individual choice. Good luck Flib

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