Share this:
cowgirlmt
@cowgirlmt

Posts: 36
Joined: Nov 03, 2017

Locations for treatment

Posted by @cowgirlmt, Mon, May 7 12:28pm

I was diagnosed with MAC in August 2017 from a culture from a lung biopsy.. This all started in May 2017 when I was admitted to the hospital for pneumonia. They found a spot on my lung, and I had to have a lung biopsy done on first of July. My pulmonologist put me on the Big 3(Clarithromycin, Ethambutol, Rifampin). I could not tolerate any of those medications so they had me stop all medications and referred me to an Infectious Disease doctor. I was also put on Zithromax 500mg daily but could not tolerate that either. I have not noticed a change in my symptoms, and I am having more severe pains. I am 27 years old, and every doctor that I see says that I am to young to have MAC, but then they all review my records.
For the last year I have tried multiple medications for treatment, and at this time, my providers have told me to stop taking the medications due to severe side effects landing me back into the hospital. I see my primary, pulmonary, infectious disease, as well as an allergist. My allergist ordered a repeat CT, which marks 1 year from this all really starting. At the time they told me that it was dormant and I didn't have to worry about it growing, but I would continue with fatigue, cough, etc.. I had the CT done 2 wks ago and now they are telling me that it has grown and I need to seek a treatment right away. So now they are referring me to Tyler, Texas.. They have an 8 wk wait time, and I am considering moving to Montana so I can have support. This has been a struggle to handle on my own, and has caught me off guard. Does anyone know of a hospital in Montana, or surrounding state that would be a good place to establish? I am looking into COBRA, for coverage for the interim because I know that I am going to have to establish with all new providers when I move.

REPLY

OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot and Biopsy. Please ask them to check you Immune Globulins and Vitamin D levels. Have they tried the every other day dosing or switched rifampin and to rifabutin or vice versa. Tried Clarithromycin instead of Azithromycin. I think Tyler Texas is a good place to go. I would have your MD personally call to get you in sooner. I heard they might be involved in some research on new treatments, otherwise Jewish National or Mayo Clinic.They need to do a sensitivity on the sputum. There is also Linzeloid to try.

Liked by tdrell, cowgirlmt

Univ of Oregon supposed to have good program and they are starting study with using two instead of 3 abx on MAC

@jkiemen

OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot and Biopsy. Please ask them to check you Immune Globulins and Vitamin D levels. Have they tried the every other day dosing or switched rifampin and to rifabutin or vice versa. Tried Clarithromycin instead of Azithromycin. I think Tyler Texas is a good place to go. I would have your MD personally call to get you in sooner. I heard they might be involved in some research on new treatments, otherwise Jewish National or Mayo Clinic.They need to do a sensitivity on the sputum. There is also Linzeloid to try.

Jump to this post

I just had immunoglobulins done and IgG is low, so doc recommended I go to immunologists and look at getting "replacement" (IV infusion ). Has anyone else had that done? Hospital is still doing susceptibility testing on the MAC they've grown from my lungs from bronchoscopy on April 4 . I'm going to start mechanical airway clearance in meantime–salt nebs, saline nasal rinse . The blockages in lungs are pretty localized to a couple of places . Ive had symptoms for 10 years but they were worried re malignancies until now, bc I have had two, and both can metastasize to lungs . Now they've biopsied and ruled that out, laid that worry to rest and are focusing on MAC.,

@jkiemen

OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot and Biopsy. Please ask them to check you Immune Globulins and Vitamin D levels. Have they tried the every other day dosing or switched rifampin and to rifabutin or vice versa. Tried Clarithromycin instead of Azithromycin. I think Tyler Texas is a good place to go. I would have your MD personally call to get you in sooner. I heard they might be involved in some research on new treatments, otherwise Jewish National or Mayo Clinic.They need to do a sensitivity on the sputum. There is also Linzeloid to try.

Jump to this post

@jkiemen My allergist doctor did labs to check my immune system and he said it is all normal. My primary checked my b12 and vitamin d levels last week, both of which are extremely low.. So taking vitamin d daily and started b12 injections.. we have tried every other day and changing and I am sensitive to it all 🙁 I was landing in the hospital every time and having MRI on my brain and the whole she bang. I will call my pulmonary and see if they can get me in sooner, still haven't been called to set an appt date

@clpc

Univ of Oregon supposed to have good program and they are starting study with using two instead of 3 abx on MAC

Jump to this post

Oh yeah which ones?

@cowgirlmt OMG Kimmy! I literally just got on this site to private message you
You have been on my mind A LOT lately. You disappeared for awhile and you were so sick. I thought that you had already moved back to Montana. I am very dismayed to learn that you are doing worse. It is more important now, more than ever to get top notch care. Do you still have my previous posts? Please look back at them, both open and private.

@clpc

Univ of Oregon supposed to have good program and they are starting study with using two instead of 3 abx on MAC

Jump to this post

@clpc I will definitely check out the Univ of Oregon; however I am a little worried because so far I haven't been able to withstand any of the antibiotics for treatment.

@windwalker

@cowgirlmt OMG Kimmy! I literally just got on this site to private message you
You have been on my mind A LOT lately. You disappeared for awhile and you were so sick. I thought that you had already moved back to Montana. I am very dismayed to learn that you are doing worse. It is more important now, more than ever to get top notch care. Do you still have my previous posts? Please look back at them, both open and private.

Jump to this post

@windwalker I know I disappeared for a while, just with working all the time on this new system it has been insane. I would get home and be exhausted.. All the while trying to do online school all the time. I am trying to get out of my lease, which is a nightmare. The location in Tyler, Texas is unable to get me in until end of July. So that is making me want to move right now.. However I will lose my insurance which is what worries me. Even with my insurance and coupons I am spending at least $350 a month on medications.

You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach the company to see if they have a compassionate use protocol. AIT Therapeutics. I am hoping this will be an option for all of us one day.

@jkiemen

You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach the company to see if they have a compassionate use protocol. AIT Therapeutics. I am hoping this will be an option for all of us one day.

Jump to this post

@jkiemen I will look into it! I just know that this is getting old and I am exhausted 24/7..

that's awful. We should have had better treatments by now. I feel that we are still in the dark ages when it relates to this condition. It is becoming more prevalent and it needs more attention. I feel so bad for you.

@windwalker

@cowgirlmt OMG Kimmy! I literally just got on this site to private message you
You have been on my mind A LOT lately. You disappeared for awhile and you were so sick. I thought that you had already moved back to Montana. I am very dismayed to learn that you are doing worse. It is more important now, more than ever to get top notch care. Do you still have my previous posts? Please look back at them, both open and private.

Jump to this post

@cowgirl Call the Healthwell Foundation and ask what drugs they can help you with. They paid for my tobramycin. There are other foundations too that will help you with your meds. I will dig put my notes and get back to you on that. Are you in Texas now?

@jkiemen

You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach the company to see if they have a compassionate use protocol. AIT Therapeutics. I am hoping this will be an option for all of us one day.

Jump to this post

@cowgirl Is there any way that you can go on short term disability so that you can get yourself straight?

@windwalker

@cowgirlmt OMG Kimmy! I literally just got on this site to private message you
You have been on my mind A LOT lately. You disappeared for awhile and you were so sick. I thought that you had already moved back to Montana. I am very dismayed to learn that you are doing worse. It is more important now, more than ever to get top notch care. Do you still have my previous posts? Please look back at them, both open and private.

Jump to this post

@windwalker I will give them a call, luckily I work at a clinic/hospital currently so we try and get sample of my meds when at all possible. The most expensive part are my inhalers 🙁 I am currently in northern Louisiana and hoping to move back to Montana by the first week in June.

@jkiemen

You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach the company to see if they have a compassionate use protocol. AIT Therapeutics. I am hoping this will be an option for all of us one day.

Jump to this post

@windwalker I have looked into short term; but I don't qualify at this time. Because I am still able to work; even though I almost fall asleep at my desk.. haha

Please login or register to post a reply.