In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Sat, Aug 17 1:12pm

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot…have been doing it for years. This year we had a new mulch supplier…… I could use a pep talk, if anyone has that for this!!

@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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What a great news, @windwalker Terri! Go out and celebrate.

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@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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That is awesome news Terri!! Hip, hip, hooray!

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@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@windwalker Thanks for the kind words Terri, I'm glad to help when I can. So glad to hear about your results. Keeping my fingers crossed that mine will be negative as well- expect to hear in about 10 days.

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@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@windwalker
Yeah for negative results!!

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@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@windwalker Wonderful news, Terri! Yipee…

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What you are describing is a similar circumstances stance I had when I had a fungal infection. I was working in a hospital lab and started to cough and felt lightheaded all the time and my blood pressure was a erratic.

To make a long story short after seeing several doctors and having several test done, I took it upon myself to put a mold testing dish in the vent in my lab. Sure enough there was all kinds of mold growth. So a doctor I work with gave me a prescription for an anti-fungal medication. Such as Diflucan. When you have a fungal infection taking antibiotics makes it worse and makes it spread.

I would suggest you talk to your doctor, even if they argue with you, insist you want to be tested with an antifungal medication. There have been instances where people have had lung issues and other issues thinking it was some kind of cancer, and it really was fungus growing.

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@jocrane

What you are describing is a similar circumstances stance I had when I had a fungal infection. I was working in a hospital lab and started to cough and felt lightheaded all the time and my blood pressure was a erratic.

To make a long story short after seeing several doctors and having several test done, I took it upon myself to put a mold testing dish in the vent in my lab. Sure enough there was all kinds of mold growth. So a doctor I work with gave me a prescription for an anti-fungal medication. Such as Diflucan. When you have a fungal infection taking antibiotics makes it worse and makes it spread.

I would suggest you talk to your doctor, even if they argue with you, insist you want to be tested with an antifungal medication. There have been instances where people have had lung issues and other issues thinking it was some kind of cancer, and it really was fungus growing.

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Oh may I also you visit the website called Know The Cause. http://www.knowthecause.com

This gentleman has been teaching doctors for years and he is an expert on fungal infections and he is the one that I came across many years ago when I had this fungal infection and no one could figure out what was wrong with me.

You get this from breathing in mold spores. It could come from mold in your house. Mold in your environment fireman it. Any damp areas such as a seller any place with moisture. And yes maybe even your garden

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@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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@windwalker That is a big YAYYY!!!! Negative for all organisms! You can't ask for more than that! Nan

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@windwalker

@sueinmn Hi Sue! Just wanted you to know that I appreciate your spot-on comments. You always provide accurate info. to the newcomers. I have been extremely busy with a building roject and helping a dear friend care for two parents with dementia. I feel good knowing that you are here and catch some 'newbies' that I may not get to right away. My appreciation extends to all of you that pitch in daily and keep our network strong. I got my annual test results back from Mayo today. NEGATIVE for all organisms. That makes three yrs free of infection! Yayyyyy!!

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Great news Terry👍🏼

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@megan123

@sueinmn….I also have psedomonas, mine being much more difficult to treat…tobi doesn’t wrk for me, but Colistin does…depending on your sensitivites as well makes a huge difference and how colonized it is…it is s very dangerous bacteria, and can be difficult to treat, as I’m experiencing…tks for the onfo

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sueinmn — I read with much interest the fact that toby did not help you. I'm half way through my 5th session of toby and I sometimes think I cough more than I did before I started it. Maybe not, but tremendous coughing and heavy green phlegm It does not seem to be helping me at all. I just did a sputum sample and sure enough — pseudomonas as usual. I took Levaquin about a year ago — and clindamycin prior to that. None of those have helped. I hate to be a constant complainer, but was interested in Colistin. I have the list of susceptibility results and they are aztreonam, celepime, cefazidime, ciprofloxacin, imipenem, levofloxacin, and piperacillin/tazoactam. Has anyone on this forum not been helped by toby — and found any of the above meds to eradicate the pseudomonas. I would love to know what others have found. I need help (I'm with Rochester Mayo's and I've faxed my report to them so hopefully he'll try something else. I know Terri has used toby and another antibiotic on alternate months and I'm wondering if anyone else is on a program like hers. Thanks for all the info I can gather. Jan

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@auntnanny

sueinmn — I read with much interest the fact that toby did not help you. I'm half way through my 5th session of toby and I sometimes think I cough more than I did before I started it. Maybe not, but tremendous coughing and heavy green phlegm It does not seem to be helping me at all. I just did a sputum sample and sure enough — pseudomonas as usual. I took Levaquin about a year ago — and clindamycin prior to that. None of those have helped. I hate to be a constant complainer, but was interested in Colistin. I have the list of susceptibility results and they are aztreonam, celepime, cefazidime, ciprofloxacin, imipenem, levofloxacin, and piperacillin/tazoactam. Has anyone on this forum not been helped by toby — and found any of the above meds to eradicate the pseudomonas. I would love to know what others have found. I need help (I'm with Rochester Mayo's and I've faxed my report to them so hopefully he'll try something else. I know Terri has used toby and another antibiotic on alternate months and I'm wondering if anyone else is on a program like hers. Thanks for all the info I can gather. Jan

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@auntnanny I was treated with ciprofloxin and it knocked it out .
I rarely cough and have no phlegm, what are the symptoms? It was found in a sputum culture after I had pneumonia .
Jan in Fl.

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janovr — thank you for your info

Liked by janovr

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@auntnanny

sueinmn — I read with much interest the fact that toby did not help you. I'm half way through my 5th session of toby and I sometimes think I cough more than I did before I started it. Maybe not, but tremendous coughing and heavy green phlegm It does not seem to be helping me at all. I just did a sputum sample and sure enough — pseudomonas as usual. I took Levaquin about a year ago — and clindamycin prior to that. None of those have helped. I hate to be a constant complainer, but was interested in Colistin. I have the list of susceptibility results and they are aztreonam, celepime, cefazidime, ciprofloxacin, imipenem, levofloxacin, and piperacillin/tazoactam. Has anyone on this forum not been helped by toby — and found any of the above meds to eradicate the pseudomonas. I would love to know what others have found. I need help (I'm with Rochester Mayo's and I've faxed my report to them so hopefully he'll try something else. I know Terri has used toby and another antibiotic on alternate months and I'm wondering if anyone else is on a program like hers. Thanks for all the info I can gather. Jan

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hi aunt nanny…I too have psedo…did sensitivites as well..I am using Colistin every other month to keep the psedo at bay…I’m not doing a drug in between, because these drugs cipro and levaquin have hard sideceffects…I’m going all also for a second opinion with our head of infectious disease..drs feel that for now this might be a better plan…I have Toby and Cayston as a back up…my drs say your chances r better not to develop s tolerance if u r doing drug every other month with nothing in between..better on your kidneys and liver..will see what second opinion dr says

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@megan123

hi aunt nanny…I too have psedo…did sensitivites as well..I am using Colistin every other month to keep the psedo at bay…I’m not doing a drug in between, because these drugs cipro and levaquin have hard sideceffects…I’m going all also for a second opinion with our head of infectious disease..drs feel that for now this might be a better plan…I have Toby and Cayston as a back up…my drs say your chances r better not to develop s tolerance if u r doing drug every other month with nothing in between..better on your kidneys and liver..will see what second opinion dr says

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Jennifer@megan123 Thanks so very much for your post. Would you be so kind as to follow up after your second opinion. Jan

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@megan123

hi aunt nanny…I too have psedo…did sensitivites as well..I am using Colistin every other month to keep the psedo at bay…I’m not doing a drug in between, because these drugs cipro and levaquin have hard sideceffects…I’m going all also for a second opinion with our head of infectious disease..drs feel that for now this might be a better plan…I have Toby and Cayston as a back up…my drs say your chances r better not to develop s tolerance if u r doing drug every other month with nothing in between..better on your kidneys and liver..will see what second opinion dr says

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I have heard of most all the antibiotics, but what is Toby? Is it a short for something?

Thanks.

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