ladies…met with local Infection control Dr…impressed with her nurse Iris which sometimes is as important as the Dr.
Dr Altman seemed nice enough….was all set to order the big three when l brought up the fact l was going to be seen at National Jewish hopefully in January. Maybe even a little relieved….says she referred in past TB clients to them..though cautioned me that it took 10 days for them to respond to a question she had for them…good to know..
knew the Ethambutol..sp…causes vision hearing…did not know re Rifampin and hearing…is my memory incorrect about the Rifampin??
Dr Altman readily ordered the medication for the Candida yeast that was on my cultures ….no doubt from years of steroid inhalors and nasal spray …and gave me culture containers for mucus specimens….
next month see local pulmonologist routine appt…
keeping local bases covered Tdrell

Hi Terri, so glad for you .. you are really on the right track! To be clear .. which 3 are you being prescribed? Rifampin, Ethambutol and what is the third? Let me know and I will tell you the info I collected when I was on them. Hugs! Katherine

Terri, re: “did not know re Rifampin and hearing…is my memory incorrect about the Rifampin??”

They”” have to list any/EVERY potential side effect on God’s green earth so from my reading .. what I noted are the primary concerns for each of the three antibiotics .. BUT you have to watch and be observant of your OWN body for any/all NEW changes as you schedule each new added antibiotic. THEN watch as your OWN body adjusts to these new “insults” to your body .. AND if you have read the previous pages of the posts you will KNOW that it IS a process of each of our bodies adjusting to the meds. We each in our own way had to figure out the best way to schedule them .. AND within a reasonable time our bodies DID adjust .. AND those trusty antibiotics DID start fighting away at those nasty mycobacteriums ..eating them away .. destroying the nasty things!! YEAH! Victory is ours!!! I just pictured the antibiotic like those video games nibbling away at those nasty mycobacteriums .. winning our health back! Silly but it was a fun visual for me as I worked at getting healthy again!

So don’t worry about side effect that you may NOT get .. just work at being as healthy as you can be at each step of your journey! Hugs to you! Katherine

Katemn thanks for your generous….kind offer to share info on the big three….i will no doubt take your offer if/when national jewish makes their plan of care ….hopefully in January.tdrell

I understand National Jewish is just great .. I know with your attitude you will do just wonderfully! Be SURE to stay in touch! Hugs to you! Katherine

I have a 3 month fu appointment with my pulmonologist this week. I am on the BIG 3 antibiotics and have been on them for 3 months now.
For my 3 month FU, I just did a follow up audiology test, eye exam (peripheral vision, optic nerve health, etc) and my next appt is with the pulmonologist.

In terms of blood work, what is traditionally recommended for follow up?: Liver panel, kidney panel, Vit D, B 12, CMP?

Also my neuro-opthomologist suggested a 4-6 month follow up. In the interim he gave me a wallet size ambler test card to check my vision and suggested I do the online color test. Do you suggest waiting the 6 months.. and making the appt earlier if there are any changes or the 4 months. Thanks for your help.
Judy

@judyem, Hello Judy, The below are some notes I have made on testing .. BUT they are only for discussing with your doctor .. IF you feel full confidence in your Pulmonologist. You need to do your ‘due diligence’ in educating yourself so you will KNOW if you have a good doctors! Read carefully the pages of https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=24#post-247668 then you will know if you currently have good doctors!

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: 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.) AND HEARING

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 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.’

FROM MEMBERS: COLOR BLINDNESS APP FOR SMARTPHONES .. apps of color blindness, CBT, visual test, and visual acuity .. just go to the App Store on your phone and search each one Are You Color Blind? by James Kwan

Judy, hope some of he above helps .. just various notes I have made. Please feel free to ask any questions you may have! Hugs! Katherine

Questions
1- Does anyone take Synthroid for Hypothyroidism and have trouble with high TSH? Normal range is 2-4.6 and mine is 16! ( this test is high when you are LOW on thyroxin levels) mySynthroud does was increased once already and now increased again. Anyone? I know Rifampin reduces absorption of Synthroid but it says “minimal”

2-Has anyone had their MAC improve and Had their big 3 changed to 3 days per week, from 7 days, but toma higher dose? The higher dose of Ethambutol and Azithromycin is giving me stomach aches, at least so far. Does that go away?

Thanks for answers.
Kay S

@kaystrand, Kay, I can only speak to the Synthroid portion. I have been on Synthroid since my 40’s and made the BIG mistake of allowing my Internist to test and prescribe my Synthroid. BIG mistake. I have since learned that thyroid tests/levels can absolutely look “normal” and you can have all kinds of symptoms. I finally had the smarts to seek out an Endocrinologist at a teaching hospital who was MUCH more well versed in the nuances of Hypothyroidism .. I am now on not only Synthroid but also Cytomel which is T3 daily. It has made a difference. If you are not currently seeing a good Endocrinologist .. that would be my first step if I was you. Wish I had done that long ago.

In terms of the “higher dose of Ethambutol and Azithromycin is giving me stomach aches” .. have you tried the time per below .. from my File Cabinet .. hope this all helps just a bit .. Hugs! Katherine .. :

ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut – the antibiotics wreak havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts – they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela