(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@colapyrus

I'm a little confused about weight loss. Is the weight loss typically caused by the disease or from the meds decreasing a person's appetite? Just wondering. Jan

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Well Jan here is my take on weight loss. That is how I basically was diagnosed. I dropped 18% of my weight just like Katherine wrote once about herself. I am fortunate to have a doctor in the family who was very concerned about that plus I had no appetite and had all I could do to make it through the day with my lovely first graders. He sent me for a CT scan and the rest is history! So for me the weight loss came before meds. Irene

REPLY
@katemn

@colapyrus .. Jan, personally I have never been told by a doctor which it is .. chicken/egg thing .. but I think every single one of has had a weight loss issue .. I personally lost 18% of my body weight . and never really ever gained it all back .. even though I have been MAC "stable" since May 2014. I don't know if it is an age thing .. I am now 73 .. or a carry over .. but I still don't have a big appetite. I still "eat to live" rather than live to eat as my husband says! So my opinion is just don't worry about it .. eat as healthy as you can .. take the good advice of members here on the Forum if you are losing weight .. from my File Cabinet:

Member @21042, Kathi Weight loss: skim mild, Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that.

Member @pamelasc1, Pamela, I drank Ensure each day just to be sure I was getting some protein.

Katherine: I was told because of weight loss to have a protein shake made with yogurt each morning. I was told a good brand was: NOW UNFLAVORED 100% WHEY PROTEIN ISOLATE 10 LB. If you google it you can find where the best price to purchase is. Personally I put about 1/3 yogurt, big scoop of the Now protein powder, a bit of sweetener, fill my WONDERFUL Hamilton Beach Blender the rest of the way to the top with frozen fruit and blend away. (https://smile.amazon.com/Hamilton-Beach-51101BA-Personal-Blender/dp/B00KVZ27UA/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1466295509&sr=1-1&keywords=hamilton+beach+blender )
I get big bags of mixed berries, mangos, pineapple, peaches .. really whatever you like .. but blueberries are really healthy. It is a good way to get that healthy yogurt into your diet.

Hope the above helps just a little bit Jan! Hugs! Katherine

Jump to this post

Thanks for the reply. I haven't had the weight loss problem yet but I'll be prepared if/when I do. I like the protein shake with yogurt and fruit idea. It seems to cover multiple issues at once. Jan

REPLY
@katemn

@jillnc .. Jill, excuse my ignorance .. but I did not know what rsv was so I googled it .. were you diagnosed with: Respiratory Syncytial Virus (RSV) causes cold-like symptoms in adults? Any new information about lungs in great to have on our Forum! Thanks for jumping in on explaining on weight loss .. it helps newer people understand what is going on in their own bodies. Hugs! Katherine

Jump to this post

Yes.  Sorry I forget sometimes people don't know the letters.  It is more common in kids under 2 than in adults. Most adults I've told said they didn't even know adults could get it.  I didn't feel I had issues breathing, my throat just hurt so bad I couldn't stand it anymore and because of all my other issues I figured an er/hospital was better equipped than an urgent care.  Of course they don't treat rsv in adults so they sent me home as I was feeling better than when I had come in too.

REPLY
@katemn

@colapyrus .. Jan, personally I have never been told by a doctor which it is .. chicken/egg thing .. but I think every single one of has had a weight loss issue .. I personally lost 18% of my body weight . and never really ever gained it all back .. even though I have been MAC "stable" since May 2014. I don't know if it is an age thing .. I am now 73 .. or a carry over .. but I still don't have a big appetite. I still "eat to live" rather than live to eat as my husband says! So my opinion is just don't worry about it .. eat as healthy as you can .. take the good advice of members here on the Forum if you are losing weight .. from my File Cabinet:

Member @21042, Kathi Weight loss: skim mild, Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that.

Member @pamelasc1, Pamela, I drank Ensure each day just to be sure I was getting some protein.

Katherine: I was told because of weight loss to have a protein shake made with yogurt each morning. I was told a good brand was: NOW UNFLAVORED 100% WHEY PROTEIN ISOLATE 10 LB. If you google it you can find where the best price to purchase is. Personally I put about 1/3 yogurt, big scoop of the Now protein powder, a bit of sweetener, fill my WONDERFUL Hamilton Beach Blender the rest of the way to the top with frozen fruit and blend away. (https://smile.amazon.com/Hamilton-Beach-51101BA-Personal-Blender/dp/B00KVZ27UA/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1466295509&sr=1-1&keywords=hamilton+beach+blender )
I get big bags of mixed berries, mangos, pineapple, peaches .. really whatever you like .. but blueberries are really healthy. It is a good way to get that healthy yogurt into your diet.

Hope the above helps just a little bit Jan! Hugs! Katherine

Jump to this post

@colapyrus....I have not looked back to double check, but are you new to taking the 3 meds for MAC? I am too. I started drug number 1 this week. I hope I don't lose weight...I can't afford it. Thanks for asking more questions about that. Feel free to tag me with any questions or comments. 🙂 Thanks! Amy

REPLY

@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial Virus (RSV) in adults! How on earth are we supposed to "diagnose" ourselves between Respiratory Syncytial Virus (RSV) and a more serious virus or whatever?! I would think you did the wise thing is seeking medical care with your other health issues .. better safe than sorry I would feel for myself! Thanks for explaining! Hugs! Katherine

REPLY
@katemn

Dear All,
This is the question form I use when I see my MAC/Bronchiectasis doctor. This is merely the form I put together for myself .. cut/pasted from numerous sources .. use it .. redesign it for your own needs or whatever. You could easily copy/paste/ADD SPACES FOR NOTES/redesign it for your own use. Hope it helps someone! Hugs! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:

_______________________________________________________________________________________________________________________

Questions To Ask Your Doctor
DOCTOR: _________________________________SPECIALTY______________________ DATE_______________
1. Where is the MAI/Bronchiectasis located currently? Are there new areas or new changes? At what stage would you say it is on a scale of 1 to 10? How does it compare to my last appointment for each.

2. Are the drugs I am taking currently effective for the two mycobacterium/Bronchiectasis ?
a. Are the dosing level for each medication effective or do they need to be adjusted? b. What period of time before one of the medications can be adjusted or eliminated?

3. Based on the current progress how long would you project that I would me to be on the medications?

4. What monitoring will I continue to need? When will I need my next:
a. Follow up appointments with you? b. X-rays/ CT scans
c. Monthly Lab work
d. Hearing testing
e. Vision testing
f. Monthly salt induced Sputum Cultures (Hypertonic Saline Induced Sputum Culture)

5. How long would you anticipate the side effects of night sweats/sleep disturbance/fatigue/oral thrush/dry mouth/geographic tongue to continue? a. Do you have any suggestions for coping with the less serious side effects?

6. Do you agree with the current Medication Schedule I am following?

7. Do you suggest any other lung clearance devices? How often/when?

8. Can I still take my stated over the counter medicines/vitamins/supplements?

IF SUGGESTED NEW Medication:
a. Spelling of new drug I will be taking
b. dosing level of each new medication
c. what period of time before the next medication
d. how long do you expect me to be on the medications
e. any new monitoring will I need
f. any side effects will I likely to have
g. which side effect should be reported immediately
h. when/how do I take each of these medications/ what schedule should I follow

TESTING RECOMMENDED FOR ANTIBIOTICS:
IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.

Susceptibility Testing for Mycobacteria

http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805http://cid.oxfordjournals.org/content/31/5/1209.fullhttp://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

TESTING-baseline and periodic
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

TESTING RECOMMENDED FOR VITAMIN LEVELS
1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'

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 http://ntminfo.org/files/QuestionsToAskYourDoctor.pdf http://ntminfo.org/index.php?option=com_content&view=article&id=50&Itemid=52

Jump to this post

@tdrell, Hi Terri! I finally have the definitive answer after going for my sputum culture at Mayo Clinic March 7! I asked the Respiratory Therapist .. I told her I had always called it my "Monthly salt induced Sputum Cultures" she said that was accurate from a layman's standpoint but the medical term would be "Hypertonic Saline Induced Sputum Culture". So Terri I am inaccurate ..but for the needs of our newcomers think I am going to stick with my terminology because I think it is a bit easier to understand to a newcomer! I am wrong but phooey who needs to be right if it is easier to understand but won't be death to us! By the way .. how are you doing? How ok! Hugs to you! Katherine

REPLY
@katemn

Dear All,
This is the question form I use when I see my MAC/Bronchiectasis doctor. This is merely the form I put together for myself .. cut/pasted from numerous sources .. use it .. redesign it for your own needs or whatever. You could easily copy/paste/ADD SPACES FOR NOTES/redesign it for your own use. Hope it helps someone! Hugs! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:

_______________________________________________________________________________________________________________________

Questions To Ask Your Doctor
DOCTOR: _________________________________SPECIALTY______________________ DATE_______________
1. Where is the MAI/Bronchiectasis located currently? Are there new areas or new changes? At what stage would you say it is on a scale of 1 to 10? How does it compare to my last appointment for each.

2. Are the drugs I am taking currently effective for the two mycobacterium/Bronchiectasis ?
a. Are the dosing level for each medication effective or do they need to be adjusted? b. What period of time before one of the medications can be adjusted or eliminated?

3. Based on the current progress how long would you project that I would me to be on the medications?

4. What monitoring will I continue to need? When will I need my next:
a. Follow up appointments with you? b. X-rays/ CT scans
c. Monthly Lab work
d. Hearing testing
e. Vision testing
f. Monthly salt induced Sputum Cultures (Hypertonic Saline Induced Sputum Culture)

5. How long would you anticipate the side effects of night sweats/sleep disturbance/fatigue/oral thrush/dry mouth/geographic tongue to continue? a. Do you have any suggestions for coping with the less serious side effects?

6. Do you agree with the current Medication Schedule I am following?

7. Do you suggest any other lung clearance devices? How often/when?

8. Can I still take my stated over the counter medicines/vitamins/supplements?

IF SUGGESTED NEW Medication:
a. Spelling of new drug I will be taking
b. dosing level of each new medication
c. what period of time before the next medication
d. how long do you expect me to be on the medications
e. any new monitoring will I need
f. any side effects will I likely to have
g. which side effect should be reported immediately
h. when/how do I take each of these medications/ what schedule should I follow

TESTING RECOMMENDED FOR ANTIBIOTICS:
IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.

Susceptibility Testing for Mycobacteria

http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805http://cid.oxfordjournals.org/content/31/5/1209.fullhttp://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

TESTING-baseline and periodic
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

TESTING RECOMMENDED FOR VITAMIN LEVELS
1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'

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 http://ntminfo.org/files/QuestionsToAskYourDoctor.pdf http://ntminfo.org/index.php?option=com_content&view=article&id=50&Itemid=52

Jump to this post

<br><br><br><br><br>Hi Katherine. Been thinking of you a lot. Hoping you are feeling better and <br>better with each passing day. Hugs - Terri M.     Been <br>thinking of you too Terri.<br> <br><br>

REPLY
@katemn

Dear All,
This is the question form I use when I see my MAC/Bronchiectasis doctor. This is merely the form I put together for myself .. cut/pasted from numerous sources .. use it .. redesign it for your own needs or whatever. You could easily copy/paste/ADD SPACES FOR NOTES/redesign it for your own use. Hope it helps someone! Hugs! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:

_______________________________________________________________________________________________________________________

Questions To Ask Your Doctor
DOCTOR: _________________________________SPECIALTY______________________ DATE_______________
1. Where is the MAI/Bronchiectasis located currently? Are there new areas or new changes? At what stage would you say it is on a scale of 1 to 10? How does it compare to my last appointment for each.

2. Are the drugs I am taking currently effective for the two mycobacterium/Bronchiectasis ?
a. Are the dosing level for each medication effective or do they need to be adjusted? b. What period of time before one of the medications can be adjusted or eliminated?

3. Based on the current progress how long would you project that I would me to be on the medications?

4. What monitoring will I continue to need? When will I need my next:
a. Follow up appointments with you? b. X-rays/ CT scans
c. Monthly Lab work
d. Hearing testing
e. Vision testing
f. Monthly salt induced Sputum Cultures (Hypertonic Saline Induced Sputum Culture)

5. How long would you anticipate the side effects of night sweats/sleep disturbance/fatigue/oral thrush/dry mouth/geographic tongue to continue? a. Do you have any suggestions for coping with the less serious side effects?

6. Do you agree with the current Medication Schedule I am following?

7. Do you suggest any other lung clearance devices? How often/when?

8. Can I still take my stated over the counter medicines/vitamins/supplements?

IF SUGGESTED NEW Medication:
a. Spelling of new drug I will be taking
b. dosing level of each new medication
c. what period of time before the next medication
d. how long do you expect me to be on the medications
e. any new monitoring will I need
f. any side effects will I likely to have
g. which side effect should be reported immediately
h. when/how do I take each of these medications/ what schedule should I follow

TESTING RECOMMENDED FOR ANTIBIOTICS:
IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.

Susceptibility Testing for Mycobacteria

http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805http://cid.oxfordjournals.org/content/31/5/1209.fullhttp://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

TESTING-baseline and periodic
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

TESTING RECOMMENDED FOR VITAMIN LEVELS
1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'

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 http://ntminfo.org/files/QuestionsToAskYourDoctor.pdf http://ntminfo.org/index.php?option=com_content&view=article&id=50&Itemid=52

Jump to this post

@windwalker, Hello Terri, I really am feeling better. In fact hoping to go to a grandson's championship basketball game on Friday! Just about my first outing! I have mentioned I am a believer in joining East/West health practices .. and that all over Europe (even the Queen of England has a Homeopathic Practitioner) people there have always used Homeopathic Practitioners. That I have blessed to find a Homeopathic Practitioner that has also been a practicing Pharmacist for 17 years. Well I finally felt well enough and brain fog lifting enough to think to email her a few days ago. She told me a "remedy" to take that I already had on hand (Homeopathic equivalent to a prescription but VERY gentle and will NOT fight with ANY medical prescription) .. be darn if I don't feel the best I've felt since March 7! YEAH!! So thank you for thinking of me .. trust me .. I feel all the positive energy that ALL my wonderful Forum member are sending me to get well .. and I KNOW I will get there with all that positivity! Hugs to all! Katherine

REPLY
@katemn

@colapyrus .. Jan, personally I have never been told by a doctor which it is .. chicken/egg thing .. but I think every single one of has had a weight loss issue .. I personally lost 18% of my body weight . and never really ever gained it all back .. even though I have been MAC "stable" since May 2014. I don't know if it is an age thing .. I am now 73 .. or a carry over .. but I still don't have a big appetite. I still "eat to live" rather than live to eat as my husband says! So my opinion is just don't worry about it .. eat as healthy as you can .. take the good advice of members here on the Forum if you are losing weight .. from my File Cabinet:

Member @21042, Kathi Weight loss: skim mild, Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that.

Member @pamelasc1, Pamela, I drank Ensure each day just to be sure I was getting some protein.

Katherine: I was told because of weight loss to have a protein shake made with yogurt each morning. I was told a good brand was: NOW UNFLAVORED 100% WHEY PROTEIN ISOLATE 10 LB. If you google it you can find where the best price to purchase is. Personally I put about 1/3 yogurt, big scoop of the Now protein powder, a bit of sweetener, fill my WONDERFUL Hamilton Beach Blender the rest of the way to the top with frozen fruit and blend away. (https://smile.amazon.com/Hamilton-Beach-51101BA-Personal-Blender/dp/B00KVZ27UA/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1466295509&sr=1-1&keywords=hamilton+beach+blender )
I get big bags of mixed berries, mangos, pineapple, peaches .. really whatever you like .. but blueberries are really healthy. It is a good way to get that healthy yogurt into your diet.

Hope the above helps just a little bit Jan! Hugs! Katherine

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@beatitnow ....I have not started any meds yet. I'm scheduled to be evaluated at Natl Jewish in May so I'll see what they suggest. Hope your experience with the meds goes smoothly! Jan

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@katemn

@colapyrus .. Jan, personally I have never been told by a doctor which it is .. chicken/egg thing .. but I think every single one of has had a weight loss issue .. I personally lost 18% of my body weight . and never really ever gained it all back .. even though I have been MAC "stable" since May 2014. I don't know if it is an age thing .. I am now 73 .. or a carry over .. but I still don't have a big appetite. I still "eat to live" rather than live to eat as my husband says! So my opinion is just don't worry about it .. eat as healthy as you can .. take the good advice of members here on the Forum if you are losing weight .. from my File Cabinet:

Member @21042, Kathi Weight loss: skim mild, Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that.

Member @pamelasc1, Pamela, I drank Ensure each day just to be sure I was getting some protein.

Katherine: I was told because of weight loss to have a protein shake made with yogurt each morning. I was told a good brand was: NOW UNFLAVORED 100% WHEY PROTEIN ISOLATE 10 LB. If you google it you can find where the best price to purchase is. Personally I put about 1/3 yogurt, big scoop of the Now protein powder, a bit of sweetener, fill my WONDERFUL Hamilton Beach Blender the rest of the way to the top with frozen fruit and blend away. (https://smile.amazon.com/Hamilton-Beach-51101BA-Personal-Blender/dp/B00KVZ27UA/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1466295509&sr=1-1&keywords=hamilton+beach+blender )
I get big bags of mixed berries, mangos, pineapple, peaches .. really whatever you like .. but blueberries are really healthy. It is a good way to get that healthy yogurt into your diet.

Hope the above helps just a little bit Jan! Hugs! Katherine

Jump to this post

@colapyrus, Jan, I am so excited for you that you got into NJ .. great place .. be sure to let us know all you learn after you are seen in May! I'm sure you have lots to add to our pages in the Forum for newcomers .. how all goes well for you .. be sure to keep us posted! Good luck and Hugs! Katherine

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