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barbjh
@barbjh

Posts: 18
Joined: Apr 10, 2016

Not Treating MAC

Posted by @barbjh, Mar 28, 2017

So I had my visit to the Mayo clinic last week with tests that included chest Xray and Pulmonary function test along with TRYING to get a sputum sample, that never works for me. At this time everything is stable and they have decided to not treat. My function tests have not changed much and the xray showed no major changes. This is good news but I still get nervous knowing that I have these nodules in my lungs and that I am a former smoker. I still have not got clarification on whether I have Bronchiectasis. I sent an email out today to get some more clarification. I did not get a chance to see Dr Aksamit – he is so hard to get into now – becoming popular, which disappointed me since I have seen him in the past. Hopefully his assistant that I saw will at least confer with him. My trust level with Dr Aksamit is so much higher, he truly takes the time to discuss everything and give you the answers, and compassionate to boot. Are any others on this site not being treated and how did they decide it?

REPLY

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

@barbjh Welcome to our Forum .. glad you found us! Do you have a first name .. Barb? .. more personal. I agree with Colleen .. my understanding is that at Mayo the doctors work as a “team” and do consult. I also see Dr. Aksamit and have since 2007 .. from working with him I get a strong sense that the decision to start or NOT start antibiotic for a doctor is like putting a BIG puzzle together .. the components are CHANGES IN: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. AND my responses to his VARIOUS medical questions. He then puts it all together and decides if I need to come back in 3 mos .. 6 mos .. 12 mos. It ALL depends on the changes .. ie progression of the disease .. and ONLY the doctor can put that puzzle together! But THAT is the importance of proper frequency of follow up appointments .. the mycobacterium is a sneaky critter that needs to be watched and followed! You do NOT want to start antibiotics if you do NOT need them .. BUT when/if you need them .. START! When I was diagnosed in 2007 this Forum did not exist .. I was a “lonely only” .. it was SO scary .. I felt SO alone with so little information that I refused treatment UNTIL I got a second very serious “abscessus” type mycobacterium .. bad news .. I always regretted refusing treatment initially .. it then took 30 months of 4-5 antibiotics to get rid my MAC. SO @barbjh , my advice to you would be .. listen to the Mayo doctors .. do NOT go on antibiotics until you NEED them .. then if you do need them .. trust the experts. That is what I would do if I was in your shoes .. Mayo is “Mecca” .. people come from all over the world .. why wouldn’t we trust them?

In terms of the Bronchiectasis .. they should be able to tell from the Xray I THINK! I agree .. you should be aware of this medical condition if you have it.
Hugs to you! Katherine

@colleenyoung

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

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I, too, am a former smoker…have a nodule, bronchiectasis, RA, and MAC that doesn’t yet require treatment. That is a blessing. Means your body is currently doing a good enough job of fighting it without help. May it remain that way for us.

@colleenyoung

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

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boomerexpert….AMEN! Terrid

@colleenyoung

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

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Why did they decide not to treat you? They said because I have no fever, chills, night sweats that I do not need to be treated at this time. I never have an appetite though, could be something else. I have been having major GERD and sinus issues and suffer from some depression – not sure why I always feel so crappy. I am still waiting to hear back on confirmation as to if I have bronchiectasis. I sent an email to get clarification last week and have not heard back. Do you have yearly chest xrays or CT scans? Just wondering how they monitor your nodules? Barb

@colleenyoung

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

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No symptoms same reason my doc decided no treatment warranted at this time…also my last scan (PET this time) showed areas with new MAC and areas where it had healed itself; moving about vs. increasing. As to no appetite, untreated GERD + depression is a one-two whammy for no appetite. Recommend treating both.

@katemn

@barbjh Welcome to our Forum .. glad you found us! Do you have a first name .. Barb? .. more personal. I agree with Colleen .. my understanding is that at Mayo the doctors work as a “team” and do consult. I also see Dr. Aksamit and have since 2007 .. from working with him I get a strong sense that the decision to start or NOT start antibiotic for a doctor is like putting a BIG puzzle together .. the components are CHANGES IN: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. AND my responses to his VARIOUS medical questions. He then puts it all together and decides if I need to come back in 3 mos .. 6 mos .. 12 mos. It ALL depends on the changes .. ie progression of the disease .. and ONLY the doctor can put that puzzle together! But THAT is the importance of proper frequency of follow up appointments .. the mycobacterium is a sneaky critter that needs to be watched and followed! You do NOT want to start antibiotics if you do NOT need them .. BUT when/if you need them .. START! When I was diagnosed in 2007 this Forum did not exist .. I was a “lonely only” .. it was SO scary .. I felt SO alone with so little information that I refused treatment UNTIL I got a second very serious “abscessus” type mycobacterium .. bad news .. I always regretted refusing treatment initially .. it then took 30 months of 4-5 antibiotics to get rid my MAC. SO @barbjh , my advice to you would be .. listen to the Mayo doctors .. do NOT go on antibiotics until you NEED them .. then if you do need them .. trust the experts. That is what I would do if I was in your shoes .. Mayo is “Mecca” .. people come from all over the world .. why wouldn’t we trust them?

In terms of the Bronchiectasis .. they should be able to tell from the Xray I THINK! I agree .. you should be aware of this medical condition if you have it.
Hugs to you! Katherine

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Hi Katherine, sorry for the delay in getting back to you. I have not been feeling the best – mostly GERD and stomach issues. I also am still trying to get clarification on whether I have bronchiectasis. I asked at my appt and he did not seem to know for sure so I emailed him and asked for clarification. Still have not heard back – they said the email got forwarded to Dr Aksamit. Since they do not want to see me for another year it is important to get answers to all my questions. Dr Aksamit is great at that. They suggested using their Mayo clinic nasal spray and you mentioned you used it. Does it work well for you? I have been using the saline rinse which seems to help and Flonase but hate the smell of the Flonase. You have been through a lot. It is always kind of scary knowing I have these nodules growing in my lungs along with this infection. But on the flip side my mom had it and was never treated, and she is 92. Barb

@colleenyoung

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

Jump to this post

Sorry for the delay in getting back to you. I guess at this time the treatment would do more harm then the MAC. Because my Xray showed no change and my pulmonary function tests were good, no fever or chills, they are not treating. I have some GERD issues and other things going on too so they are not sure how much of it is the MAC and not the other things. I have gained back 10 lbs which is good, I was concerned because I had last 15 lbs – with out needing to.

@colleenyoung

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

Jump to this post

I too lost weight wo/trying at one point, but realized it was due to upsetting goings-on in my life that caused me to eat less…now that life is better, so is my appetite and I gained it all back!

@colleenyoung

Thanks for starting this discussion, Barb.
I’m bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I’m relying on my memory, so forgive me if I’m remembered incorrectly.

Barb, I know it’s disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?

Jump to this post

@barbjh .. do you have a first name? Much more personal. @barbjh, below is from my File Cabinet:

ANTIBIOTIC .. TREAT OR NOT TREAT
Dr. Aksamit and have since 2007 .. from working with him I get a strong sense that the decision to start or NOT start antibiotic for a doctor is like putting a BIG puzzle together .. the components are CHANGES IN: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. my responses to his VARIOUS medical questions. He then puts it all together and decides if I need to come back in 3 mos .. 6 mos .. 12 mos. It ALL depends on the changes .. ie progression of the disease .. and ONLY the doctor can put that puzzle together! But THAT is the importance of proper frequency of follow up appointments .. the mycobacterium is a sneaky critter that needs to be watched and followed!

@barbjh , this said .. DEFINATELY .. there SHOULD be a follow up plan in place for you. WHEN do they want you to come back? Each time I have a check up it is with: sputum culture, Xray and various pulmonary testing .. then discussing my current physical condition with the doctor. IF you are NOT given a follow up plan I would definitely question it .. but I would be very surprised it you are not. Keep us posted! Hugs! Katherine.

@barbjh Yes I do use the Mayo nasal spray and am HAPPY to .. I use it .. 2 puffs .. 2x per day! One member said it caused some nasal bleeding .. me too .. BUT the other night I forgot to use it before bedtime .. then didn’t want to get out of bed to go to the refrigerator to do it. BAD decision! I coughed/snuffed/nasal issues until I could hardly get to sleep for a LONG TIME!! Really makes a difference for me .. so I don’t mind a bit putting up with a bit of nasal bleeding .. plus our home is SO dry in the winter .. that I am sure also contributes! So personally if I was you .. I’d give it a try. From my File Cabinet:

MAYO NASAL SPRAY The nasal spray I get from Mayo is what is called a “compound prescription” meaning the pharmacist actually prepares it themselves. Personally I just get mine filled at the Mayo Subway Pharmacy, Rochester MN and they mail it right to my home without any issue .. that has been the simplest thing for me.

WHY? If you doctor prescribes it .. you have to ask a local pharmacy: “Are you a compound pharmacy? Do you know of one and what is their phone number?” Then you can have the prescription transferred to that compound pharmacy from where your doctor faxed the prescription.Problem .. when I tried to get my prescription refilled at a local pharmacy they declined .. said they did not have the “kit” which is essentially the bottle and nasal spray portion .. not the ingredients. So this may be the issue you run into.
The nasal spray must be kept refrigerated and is:
Mometasone 0.033%, Ipratropium 0.02%, Diphenhydramine 0.033% Kit
TRAVELING
If you are traveling .. most places you stay will have a mini frig .. you could take a traveling wallet .. this was recommended for my husband’s insulin .. you could “pick” out the threads between so it is ONE solid pocket.
https://smile.amazon.com/Cooling-Wallets-Insulin-Between-Refrigeration/dp/B000C15C8M/ref=pd_sbs_121_3?_encoding=UTF8&pd_rd_i=B000C15C8M&pd_rd_r=MQVZVDEG6WWKTH4BXY8F&pd_rd_w=3hyf3&pd_rd_wg=7fDea&psc=1&refRID=MQVZVDEG6WWKTH4BXY8F

Hope the above helps! Hugs! Katherine

I decided the side effects of the antibiotics were too severe, the duration for taking them too long and the recurrence rate, two years, too short. I was diagnosed seven years ago. I am now 80 years old. I do not regret my decision. I have had fairly good quality of life, able to travel etc. The mac x-rays and scans have been stable for the past few years. I also have bronchiectasis which is not treatable. I recently got a mild pneumonia so not feeling so great now but a bit better every day. I know some people tolerate the drugs well but others are truly miserable on them.

If you’re asymptomatic glad you’re not taking the meds. No need, actually!

@boomerexpert

If you’re asymptomatic glad you’re not taking the meds. No need, actually!

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But wouldn’t it b better to treat the infection while one still feels good?

How one feels is not the criteria…treatment based on growth of infection determined by CAT/PET scan…as with any other infection, treat only when clinically necessary.

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