Big 3 and Ongoing Bloodwork for MAC

Hello Kay, my WBC is low too. I thought something to do with Rifampin. My Vitamin D is low so I start taking supplement. Hopefully it will get better, I will pray for you. God Bless you.

Cila, it is common for Vitamin D to get Low with our meds .. I get it checked at least semi annually if not more often . . FYI. Hugs! Katherine

Hi Katherine,

I am new to the world of MAC and to social media groups but my sister forwarded something you wrote about your "delight" with the 5 antibiotics that you are being with. I am to begin treatment within the month and I would love to hear how you have coped with all of the meds and the side effects. I have heard nothing good about treatment and I am so scared.

Thanks for your time.

Hello Lynette, welcome .. I am so glad you found our Forum! Trust me .. I was NOT delighted with my 4-5 antibiotics .. BUT if you read through the pages of our Forum you will be SO glad you did! You will find a lot of comfort in educating yourself .. find support and help in understanding your disease .. AND realize it truly is not as bad as you think it is.

Nope I was NOT delighted! I was every bit as scared as you are .. AND I had zero places like this Forum to turn to .. NO ONE to help me understand what I was going to go through .. it was pretty scary. That is exactly why I wrote that initial post. That is why I try to "play it forward" by helping new people .. because I absolutely remember just exactly what you are going through. But PLEASE do your "due diligence" .. you will find that is one of my favorite phrases .. that means merely to educate yourself about your disease and all it's ramifications. Just in reading through the past posts you will find that MANY of us have been exactly in your spot .. BUT many have had MANY different reactions to the meds.

Why? Because we all have different bodies .. the way a person responds to a drug is affected by many factors, including genetic makeup, age, body size. But by reading you will see that with time .. we ALL survived .. and actually thrived!! After taking 4-5 antibiotics for thirty months .. I have now been "stable" ever since May 2014!! YEAH!! I have an appointment in November 2016 with my beloved Dr. Aksamit at Mayo Clinic, Rochester MN .. and have every confidence that I will be labeled STILL STABLE!! I travel .. have fun .. live a great life. Lynette, PLEASE keep coming back to our Forum .. you will find the nicest most supportive people who will walk this journey with you .. each step of the way! We will be here for you .. I promise! Sending you a hug at this tough time for you! Katherine

Hi Katherine,

Thanks for your quick reply. Can you suggest any tips to help in getting started with the meds. Do probiotics help?

WE moved from Eden Prairie MN jut prior to my diagnosis. How great to have the Mayo..

I live in Greenville, SC and am able to go the MAC Center of Excellence at the Medical University of South Carolina.

I also have a pulmonologist in Greenville and am not sure if I should continue using two docs. Any experience?

Best

Lynn

Lynn, again I encourage you to read the past posts .. it has SO much helpful and good info.

ABSOLUTELY .. YES .. do start right away with probiotics .. get that tummy as healthy as possible! Dr. Aksamit recommended starting right away. Personally I researched and found the 3 different probiotics with the MOST billions and most different strains for each. Then this is just me .. but I would rotate the different 3 brands .. feeling that way I would get the most different strains of probiotics possible.

Now this certainly is not scientific .. just me trying to do my best. If you don't want to go to that trouble .. since I am now off the antibiotics I recently found a probiotic that I am now taking daily just for general health that I felt is pretty good: HEALTH ORIGINS NATURAL PROBIOTIC 30 BILLION CFU'S WITH 8 STRAINS
https://smile.amazon.com/Healthy-Origins-Probiotic-Billion-Stable/dp/B00309S4C4/ref=sr_1_1_a_it?ie=UTF8&qid=1475640098&sr=8-1&keywords=HEALTH+ORIGINS+NATURAL+PROBIOTIC+30+BILLION+CFU%27S+WITH+8+STRAINS best price I found was here at Amazon .. $36 for 150 caps (but remember .. NO trouble should be TOO much .. remember .. you are only given one body in this lifetime! If you don't take care of it .. It can't take care of you! Be kind to it!)

In terms of doctors .. I always recommend asking them "How many MAC patients have you treated in the past twelve months?". This is just me .. but I want someone who is up on the treatment. THEN if I find that ONE doctor .. that I TRUST and feel comfortable with .. I feel you do NOT need conflicting advice from two different doctors .. UNLESS you feel you need a SECOND opinion!

Lynn, I am SO happy you have the MAC Center of Excellence at the Medical University of South Carolina .. so many people out there are stuck with situation where doctors don't have a clue hardly what MAC is!! You are indeed blessed .. I am so happy for you! Sounds like you are in good hands .. BUT even then .. do your due diligence .. google the various doctors there at the U .. evaluate 1. Where did they go to school (in my personal opinion .. the tougher the school they got into .. the brighter they are .. AND the more I want to be their patient!) 2. I like a balance in age .. old enough to have experience .. knocked their heads up against the wall enough times so I am not their guinea pig .. AND yet young enough that they have the newer knowledge. Now this is just my thinking as I research doctors .. but it has worked for me and finding doctors for my husband. Hope it helps give you some thoughts! Remember .. YOU are the EMPLOYER .. the doctors are YOUR employee!! Unless you have insurance issues .. don't forget that you are in the driver's seat!

Hope this helps just a little. Just remember to be logical .. this disease is not rocket science .. just take figuring out .. AND you can do it! We all will be here helping you along the way! Hugs to you! Katherine

thank you so much for your sage advice. Happy to hear about the probiotics. Best, Lynn

Lynn, please feel free to any more questions you may have as you read through the pages .. keep coming back .. we are here for you on your journey! Hugs! Katherine

katemn.....printed this question list out...putting it my MAC folder to bring with to NJewish when l get my appt....in order to have Dr Heuitt.....l will wait til January....otherwise was offered appt in December with other Doctors....figured l am more comfortable with her hence worth the wait....going about local appts...next week with local (milwaukee) Infectious disease Dr....to see her knowledge base and willingness to work with NJ when the time comes...terrid

Hi Terri! WOW! it sound like this girl has a plan .. is working the plan .. AND going about her day after doing a GREAT job of her "due diligence"! You can be SO proud of yourself! Good for you!! I am sending you a BIG hug! Katherine