(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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no worries, please take care Katherine, hope all goes well with your husband.

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@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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Hi Katherine, let us be the furthest things from your mind. Know that we
care and send up prayers and hopes for a good outcome for your hubby. Hanging
out in hospitals is tough. Be sure to take care of yourself too. We all send
love and hugs, sincerely, Terri M. and the group.
 

REPLY
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Hello, I have read that MAC can affect the stomach. Mine, I don’t think
has. I never have cramps or anything, but, I have wondered if my intestines are
not absorbing nutrients properly as I have lost a lot of weight. (22 lbs)
recently gained 8 lbs back. Hopefully some others can jump in on this. I am
there with you on just trying to get through every day tasks. For some reason,
it takes longer to do things. Hang in there. Hugs! – Terri M.
 

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@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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Good to know.
 

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@barbjh

It has been some time since I have written on this forum but read most responses every day. Tomorrow I go back to the Mayo for a follow up visit. Dr Aksamit has decided not to treat my MAC in the past but to just watch it. I will be doing tests tomorrow and then seeing someone in pulmonary who works under Dr Aksamit. I am a little nervous about this visit. Wish I was feeling better but that is not the case. But I have gained weight which was a concern after losing 10 pounds before. Another thing is I usually go alone so it can be overwhelming. At least I live close by, 1 1/2 hours away. I will let you know how it goes, just wanted to reach out to all of you wonderful people that can relate to the struggle. Barb

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Hi Barb, you will be in good hands at the Mayo. Keep us updated. Terri
M.
 

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Hello @ijustdontbreathewell — do you have a good primary care doc — internist or family medicine doc? Any good doctor would be concerned about someone gaining 32 pounds in 2 months, and would check for things other than ‘retaining fluids’. A thorough exam & work-up would be in order ASAP, not by a pulmonologist or infectious disease doc. NTM or MAC doesn’t present these type of symptoms. Something is causing you to swell up, retain fluids, etc. and that could be many things. I have had several friends & acquaintances who suspiciously have unexpectedly gained weight, thinking fluid retention, and it was tumors growing undetected. I hope to read soon that you’ve seen an excellent internist who is following thru on your situation. My very best to you. Please report back to us.

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@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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I read posts every day but don’t feel knowledgeable enough to offer advice. I’m still learning all about this. If I think I can ever be of any help or support to anyone I would certainly do so. I hope your husband gets well soon and you take care of yourself as well too. Gina K

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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A good internist will have answers so you mustn’t stop until you find one, difficult as I can imagine that is right now. Sounds like one of two things: auto-immune disorder; food, medicine, or other allergy. This may be a stretch but check it out: https://patient.info/health/angio-oedema-leaflet

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Quite possible…recommend seeing a nutritionist – good one can find the answers

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Hi Paula, and thank-you for your reply and kind concern. No I usually go to the doctor when I get sick, not as a habit. However I work for a major hospital,
and believe me I could write a book now on how not to treat patients. The first PCP they gave me literally smelled like a homeless person and appeared to be recovering from a bad night, I was afraid of him, he told me that nothing was wrong with me that I
was a drug-seeker. I went to the competition hospital, where I had neurosurgery for my back and a brace for my arm. Nothing wrong? Then they gave me to Internal Medicine, they gave me penicillin which it clearly states and I told them I am allergic too, lovely
10 hours in the ER, next I had a new IM whom told me that ticks don’t carry disease, I had rocky mtn spotted fever and once again went to one of our satellite clinics after a friend who was a doctor in China for 30 years called and told them that she took
the tick off she saw the red bulls eye that there were 9 ticks and they had better get some doxy in my as soon as she arrived with me, as she can’t write in this country, they did or I would have been in ICU or dead. A good doctor is very difficult to find,
especially around here it seems, and I am literally surrounded by them. Today I went to a new PCP who was only interested in treating my sinus infection and my pneumonia. I will not even begin to tell you how unhappy I am with him. I asked him to please show
me my Xray, and to point out the pneumonia, he mis-identified it, I showed it to him, he took the laptop away, so I asked him to just answer one question, if I had this as the other CST and the report states over a year ago and it is and was pneumonia, then
why do I still have it, same just worse? I would not have lived this long with such severe bi-lobar pneumonia, I mean both lungs are about 50% full of something. His answer was “I can’t answer that.” They seem to have told me that my CST was normal and fine,
nothing wrong, and there was a doctor friend standing right beside my bed when they told us both that, witness. Ut-oh. Yes the infection is clearly there and it is MAC, there could be some Pnue in there also, but my mother and my aunt both died of MAC and
I am very familiar with it. But, I agree with you something else is seriously very very wrong. They had given me  an allergy medicine that can cause liver and or kidney failure, or congestive heart failure, it is daily, that is when the fluid retention started
and everything else, after I had been on it for 6 weeks, he said that was exactly what was going on. But their tests showed that everything is fine. Well it is not fine, and neither was my CST, which was also called fine. And some of my friends (doctors) want
to know about my butterfly face, my Aunt also had Lupus, and my mother and I both had/have Hashimoto’s. The Lupus department would not give me an appt. I just need to know “where have all the doctor’s gone?”  He wants to see me for a yearly physical in 6 weeks,
I told his nurse she can make the appt. and when I end up in the ER prior to that I will call and cancel or have someone do so for me as the case may be, I have already gone anaphylactic once in the last 6 months. I am beginning to think I will just find a
good herbalist or maybe a witch doctor, LOL. And yes I thought tumor, but the weight is sometimes gone, at least the huge pregnant belly, it will be totally flat for a day or so, and then 9 months again, and it varies throughout the day, and it includes my
legs and feet, ankles, and now arms, face and chin. I don’t think a tumor would shrink and then grow back? But I will look into that. Thanks for this email being here when I came in I really had one of the worst days of my life, everything went wrong, I even
lost my only set of car/house keys for over an hour, will make dups tomorrow. At least I had a kind person here for me, that would be you, and I thank you so very very much, just to have someone to talk to, I can’t tell my co-workers or my friends I don’t
want sympathy or anything to be different with them, and my dog says he still loves me even if we can’t go for but really short walks and not every day, that is what hurts the most, to let down those that depend on me. Bless you!
 

REPLY
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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This is 21042(kathi) So sorry youre having a difficult time with doctors a d hospital. Im blessed to live in this wonderful retirement town with excellent caring and knowlegeable doctors. Dont give up, keep fighting them til you get answers. I will be praying for you. Im new on this forum and dont have much advice to give anyone but i’ve been helped to hang on when i almost gave up. The meds made me so sick i wanted to die, but after a month, im doing just fine. I drink an energy shake every day and this has stableized my weight after losing 12 pounds. Get lots of rest and let your little dog love on you.

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@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Hello again @ijustdontbreathewell – I really feel for you . . . your post sounded so like you’ve had one of the worst days ever! I understand about auto-immune diseases – my father had Scleroderma, his sister had severe Lupus (from which she died rather young), etc. These can have genetic tendencies and can really wreak havoc on your system. You obviously are ill. If I were you, I’d find a good internist NEXT WEEK and establish a relationship with him/her. Get a thorough work-up and testing. And stick with him/her … so as you get older, you’ll have a good doctor that will know your health history. I’ve had fabulous doctors, including two excellent women internists. Do you have a teaching hospital near you? They provide excellent physicians.

I chuckled when you wrote that “my dog says he still loves me”. On the bright side, you’ve got a good sense of humor!! Hang in there. Keep us posted.

REPLY
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Thanks Kathi,  

I am newer than you so you are older than me here
J

I would be so happy to be a size 2 again, if the swelling would just go away, my mom was always tiny and so was my Aunt so I guess I never noticed them losing
weight., or perhaps they were ones that didn’t.  They were always tiny and delicate and ephemeral, and I am just the opposite fiery and energetic and athletic, well I was, now I am just tired and mean as a snake
J Sort of sound like one also LOL.
Thanks for cheering me up, I am a workaholic, guess that is why those that do so little really make me mad, all she had to say was, it’s a child, and I said
be right there and here I am…I expect that is the commitment we make no matter how large or small our part is in the healing?, so when others think it is the most money for the least work, 8-4, they are a number, it really ticks me off.  But I think I will
take your advice and go home and just curl up with my ShitTzu and try to sleep, I can always stop at the drugstore, that bloomin idiot did not even give me cough syrup and I haven’t slept for days for choking when I try to sleep, “where have all the doctors
gone??” I will find someone to find out what is wrong but it looks like I am going to be firing a lot of frogs along the way. At least I am learning to fight smart.
 
Thanks, sweet dreams, and go eat an entire carton of Hagen Daz with chocolate syrup and nuts and fruits and whipped cream!!!! Do it so I can live vicariously!!
 
 

REPLY
@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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Good luck Katherine with you husband – hope he recovers quickly…. Josephene xo

REPLY
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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Hi @tdrell I am looking at a 12 hour flight, I was planning to wear a mask, was just wondering if you wore a mask on the plane? Or if anyone else out there has tried wearing a mask on a plane and weather it worked to prevent bugs?

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