Mayo Clinic Connect
Has anyone had abnormal blood tests on the big 3? Ethambutol, Arythromycin , and Rifampin?
My White Blood Count is below the normal level, and I’m concerned of course.
No white counts. Just fatigue and the rest that goes with MAC although I haven’t been formally diagnosed. Had a CScan yesterday. Hope to find out more
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Hello Kathyrn, I just can’t have an opinion on the nodule growth size .. I am just not a pulmonologist. All I know is what I experience with Dr. Aksamit when he looked at my various Xrays and CT scans .. he looked .. I always had various spots all over my lungs in my viewpoint .. but I had to depend on his experienced eye to evaluate the difference between the current and the last sizes .. IF/WHEN it made a difference.
Kathryn .. THIS is when our trust factor becomes very importance with our doctors .. when we have to step back and know that we have made a good choice in educating ourselves in choosing this doctor .. NOW we are in their hands. THEY have to evaluate the test results.
BUT that said .. if indeed mycobacterium has shown up on two reports now .. I sure would push the issue to get some hard and fast answers at this point! Below is a list that I put together .. cut and pasted from various sources .. hope you find it helpful! Keep us posted! Hugs to you! Katherine
. These questions were written from a patient’s perspective and are not intended as medical advice.
1. What do I have? How do you spell it. Where is it located?
2. Was drug sensitivity performed from a culture? (If not, can it be done while the sample is still viable?)
3. What drugs will I be taking?
a. What is the dosing level for each medication?
4. How long do you expect me to be on the medications?
5. What monitoring will I need? (See examples below)
6. How often will I have:
a. Follow up appointments with you?
b. X-rays/ CT scans
c. Lab work
d. Hearing testing (try to have hearing and vision tests done before starting your medications so they will have a baseline by which to judge any changes)
e. Vision testing
f. Sputum cultures
7. What side effects will I be likely to have?
a. Which should be reported immediately?
b. When/how do I take my medication?
c. Do you have any suggestions for coping with the less serious side effects? (see Treatment Tips from Other Patients for some helpful hints)
8. Will IV drugs be necessary?
9. Will I also need inhalers?
10. Should I use any device? (How often?)
11. Can I still take over the counter medicines/vitamins/supplements? (Be sure to tell your doctor about ALL nutritional supplements, herbs, or over the counter products that you take. These can interact with your medicines, or decrease their effectiveness.)
12. Would I be a candidate for surgery? Why/why not?
13. What if I lose my appetite?
14. What if I feel depressed?
15. Can I exercise? What kind of exercise?
16. What precautions should I take? Activities to avoid?
Some examples of the type of monitoring that may be needed – consult your physician:
Will I need bi-monthly lab work?
Some side effects are especially common with certain antibiotics and need their own specific tests. This is only a partial list:
Ethambutol – color vision and visual acuity – monthly
Clarithromycin – hearing and balance every 2-4 weeks
Azithromycin – hearing and balance every 2-4 weeks
Amikacin – hearing, balance every 2-4 weeks / drug levels and kidney function every 1-2 weeks
Other things to consider:
• Keep copies of all your lab work
• Keep your x-ray/CT scan films yourself, or consider having them done where they can be put on a CD
Liked by Colleen Young, Connect Director, TML
Kathryn, LOVE your “good thoughts”! I think this kind of thinking REALLY helps our journey along .. congratulations on being a published writer .. WOW! .. that is just great! That must be so fulfilling. You have such a great attitude .. I just know that is going to help you along the way .. keep it up! Hugs! Katherine
Thank you so much for taking the time to provide me with this list of questions which I have printed out. I do obtain all my blood test results and cscan reports. I don’t want any “surprises when I visit my doctor who I do trust. I’m a little “down” at this report but have wonderful people (kids/students) to keep me distracted. Here I go! Very best, Kathryn
Liked by Katherine, Alumni Mentor
You indicate your latest scan shows “arterial-venous malformation complex”. Can you elaborate? Has your doc told you what that is, where it’s located, how to treat, etc. I ask because my brother has something similar.
Re: the change in the size of a nodule, that’s something to discuss with your pulmonologist when you see him on Oct 7th. You’d want to know specifically what type of NTM you have, is it slow or rapid growing, etec. And a bronchoscopy is the surest way to do that.
Best wishes, and keep us posted.
Thanks Paula for writing. I thought that the term “arterial-venous malformation complex” was not different from my former evidence of MAC. You have made me think now that I better get more information. Katherine was wonderful in giving me a list of items to ask my doctor on my Oct. 7 visit. Could you tell me the symptoms your brother has? I am having such a good beginning of the school year that I truly want to go on. I share so much in my childrens'(students) dreams – it is a wonderful experience. Well, no self-pity here – just need to find out more. Again, thanks.
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
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
Liked by Colleen Young, Connect Director
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?
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
Liked by tdrell
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
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