Big 3 and Ongoing Bloodwork for MAC

Posted by Kay Strand @kaystrand, Sep 26, 2016

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.

Thanks
Kay

@kwilbur

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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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

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@kwilbur

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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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

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@kwilbur

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

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@kwilbur

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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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

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@kwilbur

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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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

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@kwilbur

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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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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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

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@tdrell

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

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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

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@tdrell

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

Jump to this post

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

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@tdrell

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

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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

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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

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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

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