Hi Kate thank you so much for your reply and encouragement. I do know that this forum is a wonderful asset to all of us suffering the same disease/ infection. I live in Richmond Virginia so the Jewish in Boulder and the Mayo are so very far from me. I'm just trying to hold steady right now. Doesn't seem to be growing . My CT the other day wasn't very remarkable.   Honestly that gave me confidence. I never have any mucus when I cough up the blood it's usually just blood a couple of tablespoons I haven't heard anyone else mention blood... it ends as quickly as it begins these little episodes. Ninety-nine percent of the time my cough is totally unproductive. Usually it's just a dry cough I think mostly associated with post nasal drip. I am not averaging once a month coughing blood I went over 3 months having no episodes..  it's the stress of the unknown..Sent from Yahoo Mail on Android

@gggolfs, Hello GG, man this is a tough time for you. Virginia .. hmm .. would Florida be too far? Below is the info for Mayo Florida in case you might consider that. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Also read the past pages of the post to find a :
1.GOOD Infectious Disease doctor locally. Just google it
2. call the various offices .. ask to speak to a nurse .. ask 'How many MAC patients has your doctor seen in the past 12 months?' If a NURSE in the office does not even KNOW what MAC is .. that is a pretty good tip off that office does NOT treat MAC patients!
3. Request an appointment with the BEST ID doctor locally you can find
4. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
5. Having read ALL the back pages of this Forum .. done your 'due diligence' .. educating yourself .. you will NOW have a LONG page of questions and will KNOW exactly WHAT the ID doctor SHOULD be doing for you .. or NOT doing.

GG, hope the above helps .. feel free to ask any questions .. we are here for you! Hugs! Katherine

Hello Kate! I am from Richmond, Va. also. I now live in Bluffton, S.C. near the shore. This location is less cold and damp than Richmond and I do a lot better here. I go to the Mayo clinic and love it. They helped me tremendously. If you get worse, you can stay overnite here, I am 2 1/2 hrs from the Mayo. Just putting that out there. I am on a regimen of tobramycin for 28 days, then 10 days off , then 10 days on cipro, then 10 days off, then back on tobramycin for 28 days. this has knocked the MAC colonies way down as well as the other fungals that take up residence in my lungs. Just know that there are other treatment options out there. You have to be careful that it doesn't suddenly multiply and do irreparable damage to your lungs.

@windwalker, Terri, thank you for your good information .. it helps all people! Which Mayo location do you go to .. phone number you call for an appointment .. name of doctor you have worked well with .. what hotel there have you found good to stay at? All this information is helpful to people as they read past pages when they are new to our Forum. Thank you for your help! Hugs to you! Katherine

<br><br><br><br><br>Hi. I'd be happy to share my info. I go to the Mayo Clinic in Jacksonville, <br>Fl. and I see Dr. Leventhal (pulmonologist) he has been a real blessing and life <br>changer for me. The Mayo has an easy to use website with a "make an appointment <br>' tab. You do not need a referral. They have a dept to ask if your insurance <br>will cover you there. They are a non-profit hospital, therefore, they don't <br>gauge on pricing either. Hope this helps.<br> <br><br>

Thanks for this, WW!

Catherine have you already taken all the drugs and been through the protocol or are you still on the drugs and if you are for how long have you been on them and how long do you anticipate staying on them.? I'm just tired of major episode of pleurisy pain was unbelievable but it only lasted a day and a half. This morning I'm supposed to play golf but of course haven't had any episodes in a couple of months and I had a little blood in my cough this morning not sure if I should play or not weighing towards it's almost time to start taking the drugs but I so don't want to I'm so afraid of all of it I don't want to be that to be sickly and unable to function the way I normally do.

It's easy to engage in what's called catastrophic thinking - in your case, that you'll never get better - with all we go through...I know better and it still hits me once in a while. You will improve and eventually get your life back. Knowing that will get you through.

@gggolfs, GG , STOP! It WILL be ok! Yes I DID go through it all! YES I DID come out on the other side! YES I HAVE been "stable" and off the antibiotics since May 2014! YES I have had a GREAT life since .. traveled all over the world .. had a wonderful life! So STOP and reevaluate all the thinking that is leading you to this point!

YES when you start your med you may have some issues .. some people do .. some people don't. Each of our bodies are different. THAT is why we have this Connect Forum .. for you to read the back pages .. to educate yourself to your MAC disease .. KNOWING that knowledge is POWER! FEAR is where you are sitting right now .. do NOT let it take you over .. THAT is weakness .. KNOWLEDGE will remove/strengthen you from that fear! DO IT .. take charge of your life and your disease. It is YOUR decision .. either YOU take charge .. or the fear takes charge. Which will it be? I know I am being tough on you .. but I am a grandmother of 10 .. so I tell it like it is!

NOW Girlfriend.. IF you decide to take charge of this process .. I want you to read the back pages of this Forum .. THEN you WILL have POWER .. the Power of Knowledge of your disease .. the power of setting goals of where you want your disease process to go .. you will develop a GAME PLAN .. plus in asking question about anything you do not understand you will gain the support of our wonderfully supportive community of members who have all walked this same journey.

Remember those nasty mycobacterium critters are NOT going to magically disappear .. YOU have to take charge and get rid of them. Develop a game plan and WORK the plan. I know this is a tough time for you .. but we have all walked this walk .. trust us .. we will walk this walk with you. Keep coming back .. we will be here for you. Sending you a hug and lots of positive energy! Katherine

Hi Katherine, thanks for having that discussion with me! You make incredibly good points! No, I will NOT let the fear win! That being said, I have concerns that need addressed. My oxygen assessment wasn't to great. My pulse ox at rest averages at 90%. Then with mild/mod exercise, walking on the treadmill, my pulse ox dropped to 86%! So, know I know WHY I'm feeling so seagull & like I'm going to collapse as I run around between appointments & the airport & things at home, like grocery shopping or even taking a shower & getting dresssed. So, I imfoetunely need to start using oxygen AGAIN☹️! When I am active. I asked about swimming since that's when of the few exercises I can do without pain...she said she knew someone that took a tank & set it on the edge of the pool, then had a 50 ft cord & would swim just that far then back again. So since learning this, I would really like to speak to Dr. Aksamit some questions. When I looked at my itinerary, there is not another appointment scheduled with him. I assumed there would be an "ending" appointment with him after we've had our testing & consults with other physicians & we also made a game plan. So I went to his dept., I requested that I gave an appointment scheduled with him. She said she would send him my request but she had no guarantee that he would allow that to be scheduled.

I have not been feeling well today...which I'm sure lack of oxygen is playing a part of & a low grade temp. & vertigo & "sea legs" which isn't a common thing for me. Also my usually controlled, blood sugar that has not required insulin since Nov, is out of whack. My fasting today is 177?!!! & 2 hr after meal in the mid 200's. Why would it jump like that so quickly??!! All I can make sense of is that it's a sign of an infection, at least that's what it's meant in the past. My sister-in-law who is a PA & husband (my step-brother is an ER Dr) encouraged me to consider going to the ER/ED. But I'd rather not just because I don't want to be a pain in the butt & I don't know if they could do much or if they would do anything at all.

The salt saline neb treatment meant to induce coughing up mucous, did not work for me. I have the hardest time bringing up mucous unless I'm having an acute infection. I have 2 more scheduled go try. Otherwise we have to do a bronch.

My appointments are scheduled out past my time here which I'm concerned about. One of the appointments is with the immunologist (Scheduled April 3--- my plane ticket is for March 31). On March 31st I'm scheduled for a teaching session with the endocrinology teacher, focusing on behavior related to diet & paying attention to both carb AND fat (my triglycerides are in the 600's!!!!) Next appointment is scheduled with the immunologist, which aside from pulmonary, is the most important one for me to see! So tomorrow when I'm done, about 10:30, I will head over to the immunology dept & camp out for the day in hopes of getting in. Then if I do, great! If I don't, I'll try the next time I have free & the next time & the next time & so on, until I either get into see him or I have to fly home! If I can get into to see him, that would be awesome! Then the next day I would work on getting into GI/hepatology which is important but not as pressing as the others. Right now, it's scheduled for May 2.

I'm overwhelmed with all of the info going into my brain. But I think what is at the center of my fear is the fear of premature death & not being here to be a mom to my Emma. When I am talking with all of these doctors & getting these not so good test results, it fixes me to face my reality, that I am not physically well. I have A LOT wrong with me. I know I'm in trouble when the "well-seasoned" doctors used to seeing many "troubled" patients, reacts to my 46 med list, & diagnoses list. That makes me scared. That I'm at a top notch place & even they are thrown for a loop when working with me. I don't get positive reaction from the doctors & it makes me so scared & makes me want to just X-ray. I did cry in fact.

I'm emotiomally overwhelmed but I think a big part of that is because I am physically ill. When I'm hypoxic, I'm usually very emotionally overwhelmed but it's actually because I'm not getting adequate oxygen. It causes me to feel "out of whack"! It's hard to, being on my own. But I'm doing it & I'll keep moving forward. I'm trying my best to stay positive! I'm so grateful that I actually got to they Mayo Clinic!!! It's a dream come true!!!!!! I don't mean to sound nevative at all...I'm just facing my reality & I need to be ok with that & findout what can be done to make things better at least manageable or keep from getting worse. I will go through the forum back pages to get more educated & also not feel so alone. Thanks for listening & being a support!!!!!! ~Jen 🙂