New sputum results. Have to make a decision.

Posted by fdixon63 @fdixon63, Sep 17, 2019

Not sure if I'm putting this out there in proper format but need some guidance. Have not been on antibiotics for about 6 months. Was on big 3 for 6 weeks and taken off because of weight loss and other side affects. Changed pulmonary doctor and everything was looking great. Began nebulizing 3% saline along with aerobika.. Had been doing great. Minimal coughing, getting energy back, eating better etc. Got portal message from doctor today. Pseudomonas found with 3 colonies and 2 are resistant to Levaquin. Doc posed two options. 1) Place PICC line and start IV antibiotics for 14 days as well as 28 days of nebulized antibiotic. or 2) do only nebulized antibiotic if want to suppress rather than eradicate. What could be the benefit to surppress VS eradicate (ability to tolerate antibiotics?). Any suggestions on what questions to ask the doctor tomorrow is appreciated. Want to get as many questions answered right off the bat.

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@fdixon63
I think it may depend on how sick you are. I have had a pic line one time with a second antibiotic when I was extremely sick. But as of lately I just do 28 days of toby. Does the sensitivity test say it's sensitive to tobramyacin?
Hopefully just the toby would knock it back enough for your own immune system to take hold.
Good luck!
Shari

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@fdixon63 Hi there. I had pseudomonas back in 2016. I was treated with 28 days on inhaled tobramycin. My symptoms disappeared after the 28 days, but I remain to this day on a bi-monthly regimen of tobramycin and ciprofloxacin. I have tested negative for the last three yrs. and my dr says that I will need to be on maintenance antibiotics for life most likely. So far, I have had no side affects from the meds. The reason for lifetime of antibiotics is because of the bronchiectasis. I will always be susceptible to mac and pseudo. So far, my treatment plan has been working. I don't think our goal can be to permanently eradicate these diseases, but rather to prevent them from re-occurring.

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@pfists

@fdixon63
I think it may depend on how sick you are. I have had a pic line one time with a second antibiotic when I was extremely sick. But as of lately I just do 28 days of toby. Does the sensitivity test say it's sensitive to tobramyacin?
Hopefully just the toby would knock it back enough for your own immune system to take hold.
Good luck!
Shari

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Hi Shari. I'm actually feeling good so this news was a shock. My doc has not said specifically what antibiotic he is thinking of using. He will have to let me know about any sensitivity test–if there is one. I don't think I've ever used Tobramycin before. I can let you know what he says. Thanks for your insight. Faye

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@windwalker

@fdixon63 Hi there. I had pseudomonas back in 2016. I was treated with 28 days on inhaled tobramycin. My symptoms disappeared after the 28 days, but I remain to this day on a bi-monthly regimen of tobramycin and ciprofloxacin. I have tested negative for the last three yrs. and my dr says that I will need to be on maintenance antibiotics for life most likely. So far, I have had no side affects from the meds. The reason for lifetime of antibiotics is because of the bronchiectasis. I will always be susceptible to mac and pseudo. So far, my treatment plan has been working. I don't think our goal can be to permanently eradicate these diseases, but rather to prevent them from re-occurring.

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Thanks Terri for responding. This is a phase of treatment that is new to me so all info is appreciated. Am anxious to hear back from my doc today to see what he feels is best route to go–all things considered. When you say you test negative for 3 years, is that from sputum you coughed up or do they have to test with bronchoscopy? Here is probably a silly question but sometimes when I cough up something it is unexpected and sputum goes on a napkin or Kleenex. Can that be submitted or does it have to be spit from my mouth into a specimen container? Again, thanks. Faye

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@pfists

@fdixon63
I think it may depend on how sick you are. I have had a pic line one time with a second antibiotic when I was extremely sick. But as of lately I just do 28 days of toby. Does the sensitivity test say it's sensitive to tobramyacin?
Hopefully just the toby would knock it back enough for your own immune system to take hold.
Good luck!
Shari

Jump to this post

Hi Shari. I had been feeling very well so this news was a shocker. I'm doing daily nebulizing with 3% Sod. Chloride and aerobika. My doc has not replied with specific antibiotic treatment yet. Just got his message late yesterday and I responded last night by portal message. He is good about getting back within a day so should hear something today.

REPLY
@fdixon63

Thanks Terri for responding. This is a phase of treatment that is new to me so all info is appreciated. Am anxious to hear back from my doc today to see what he feels is best route to go–all things considered. When you say you test negative for 3 years, is that from sputum you coughed up or do they have to test with bronchoscopy? Here is probably a silly question but sometimes when I cough up something it is unexpected and sputum goes on a napkin or Kleenex. Can that be submitted or does it have to be spit from my mouth into a specimen container? Again, thanks. Faye

Jump to this post

@fdixon63 Yes, my sputem is collected at the dr's office into a sample container that I spit into. You can collect it at home if you have a sterile container to spit into. (you will need a deep down coughed up sample) If you cannot produce that, you can do an inhaled saline induced treatment that will force it up.It will have to be kept refrigerated until you take it to turn into for lab work. My Mayo doc doesn't like to use the Big 3 right off the bat until he has tried lighter treatments like mine. Then, if that doesn't clear the infection, he will use the Big 3. Since you are not very ill with it, that may be a good option for you. Do you also have bronchiectasis? If so, infections will most likely re-occur without continuous maintenance drugs. That is my case anyway, although there are other members on our site that have a stronger immune system than me and are doing alright so far using alternative medicine or none at all. For some people, the infection goes away on it's own. I have a feeling those people are not the ones that get sick enough to seek out this site. Treating MAC is not a 'One Size Fits All' thing. It must be customized surrounding your susceptibility results, specie of mac, and colony numbers. Will you report back and let me know what your dr thinks?

REPLY
@windwalker

@fdixon63 Yes, my sputem is collected at the dr's office into a sample container that I spit into. You can collect it at home if you have a sterile container to spit into. (you will need a deep down coughed up sample) If you cannot produce that, you can do an inhaled saline induced treatment that will force it up.It will have to be kept refrigerated until you take it to turn into for lab work. My Mayo doc doesn't like to use the Big 3 right off the bat until he has tried lighter treatments like mine. Then, if that doesn't clear the infection, he will use the Big 3. Since you are not very ill with it, that may be a good option for you. Do you also have bronchiectasis? If so, infections will most likely re-occur without continuous maintenance drugs. That is my case anyway, although there are other members on our site that have a stronger immune system than me and are doing alright so far using alternative medicine or none at all. For some people, the infection goes away on it's own. I have a feeling those people are not the ones that get sick enough to seek out this site. Treating MAC is not a 'One Size Fits All' thing. It must be customized surrounding your susceptibility results, specie of mac, and colony numbers. Will you report back and let me know what your dr thinks?

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Morning Terri, Yes I have bronchiectasis but the doc says, “not bad.” Doc's portal comment: “The guidelines suggest that if it's the first time isolating Pseudomonas aeruginosa in bronchiectasis, to attempt eradication. That is my usual preference.”
He would use IV ceftazidime and nebulized tobramycin simultaneously. The ceftazidime will be for 14 days, the tobramycin for 28.
They say the antibiotics will not be started until next week. Thanks for your thorough input. Gives me more to think about. Would be happy to let you know how it goes. Are there others that have used Ceflazidime treatment via PICC? Glad it is only one antibiotic and not three.

REPLY
@windwalker

@fdixon63 Yes, my sputem is collected at the dr's office into a sample container that I spit into. You can collect it at home if you have a sterile container to spit into. (you will need a deep down coughed up sample) If you cannot produce that, you can do an inhaled saline induced treatment that will force it up.It will have to be kept refrigerated until you take it to turn into for lab work. My Mayo doc doesn't like to use the Big 3 right off the bat until he has tried lighter treatments like mine. Then, if that doesn't clear the infection, he will use the Big 3. Since you are not very ill with it, that may be a good option for you. Do you also have bronchiectasis? If so, infections will most likely re-occur without continuous maintenance drugs. That is my case anyway, although there are other members on our site that have a stronger immune system than me and are doing alright so far using alternative medicine or none at all. For some people, the infection goes away on it's own. I have a feeling those people are not the ones that get sick enough to seek out this site. Treating MAC is not a 'One Size Fits All' thing. It must be customized surrounding your susceptibility results, specie of mac, and colony numbers. Will you report back and let me know what your dr thinks?

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Will the infection goes away on its own?

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Hello fdixon63. HOw are you feeling now. I'm now in the same situation as you were. I have bronchiectasis and it was symptoms free for 4 years until last year around March, 2021, I got very rare, multi drug resistant Burkholderia cepecia bacteria showed up in the sputum culture. The doctor keeps watching now. But he said if I want to eradicate, they will give an IV antibiotic with Picc line which sounds a bit scary to me. How are you feeling after iv treatment?

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Hello sweethighland. My experience with PICC line goes back to 2019. It was the first time visiting a pulmonary doc who actually was very knowledgeable about MAC. My Pseudomonas was at 4+ (the highest registered for that test). I also had bronchiectasis and positive MAC. He said do you want to try and eradicate the Pseudomonas A. or suppress. I, of course wanted to eradicate it. Treatment was the PICC line IV ceftazidime for 14 days and tobramycin for 28 days.
The PICC was inserted as an outpatient by a radiologist. The speciality pharcamy brought the "do it yourself" supplies and ceftazidime . A nurse came soon and went over the instructions. As it was administered three times a day, once was in the middle of the night. The nurse would come every few days to make sure all was going well and collected blood. Thant God my husband was so helpful and we got through it together. There is some "discomfort/pain" in getting the PICC line set up but the treatments were not painful and I'm so glad there was that option as I don't tolerate oral antibiotics very well. I have had additional pseudomonas reoccur but remained essentially symptom free for several months. The following episodes were treated with inhaled Tobramycin only. I'm actually on Tobi now (day 4). With bronchiectasis I think I will have to treat it from time to time. I'm positive for MAC again after 2 years but we're not treating it as my symptoms don't warrant it. I understand your fear as I've been there. Having trust in your doctor is so important. Also this forum has been a God-send for me. Would like to hear what you decide and how it goes. Blessing to you and family.

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