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NTM MAI and the bird connection

In: General Discussion
17 3376
b

Hi - found out recently that there is a connection with NTM MAI and living with birds - has anyone been told this by a doctor, I saw a new pcp and he was stunned to learn that I was living in a house with a bird (amazon) - I was stunned that no one ever told me there was a connection - this is a very useful bit of info that should be explained to patients that are first diagnosed with a lung disease - I am also amazed that when diagnosed with bronchiectasis that doctors do not advise patients about all the future can hold, no one ever told me about NTM's until I had it.......There seems to be a big gap in Doctors relaying info about precautions to take in life while living with lung disease ........ norma......

ps. sounds like a project for a booklet for Doctors to hand out

Latest Activity: May 3, 2018
15
17 Replies

Replies

K

My daughter had a bird she had asthma had to get rid of the bird. There is warnings out about birds and lung trouble. Been along time ago.


http://www.epainassist.com/chest-pain/lungs/bird-f...

Latest Activity: September 16, 2016
15
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
D

Hi Norma, I never really thought of the affects a bird might have on people with lung disease, but hopefully more people are aware of it, especially the pulmonologists. To your point about doctors not advising bronchiectasis patients about NTM, I agree... Its tough to hear about how long it takes for some people to be diagnosed with Bronchiectasis and/or NTM. We are working closely with NTM Info & Research on Bronchiectasis and NTM disease awareness and education for patients AND healthcare providers, and hope to offer more programs to tackle these issues in the near future.

Latest Activity: September 19, 2016
M

Hi Norma,

I've been learning recently about the connection between birds and lung disease from my sister, who has an African grey parrot. She was recently tested for bird fancier's lung after a pulmonologist also diagnosed her with Farmer's Lung, which is a degenerative lung condition caused by repeated exposure to moldy hay. (My sister is a sheep farmer.)

I also had never heard of the connection between pet birds and lung disease before my sister was tested, though it makes sense I guess, since birds shed a lot of dander.

Would you believe there is also such a thing as "bagpipe lung?" Caused by fungus that can grow inside a leather bagpipe, which is then inhaled by the player.

Latest Activity: October 12, 2016
13
L

I think i got this ntm and bronciectisis from some kind of mite, bird or rodent. I moved to this apartment a two years ago and six months later I was getting stinging sensations with severe itching it is still gowing on. Never had lung problems or pneumonia till past January when I got very sick. Anyone else have any of these symptons

Latest Activity: August 19, 2017
7
K

Lainey,

Hello! Stinging and burning sensations are a rare complaint. Have you seen a dermatologist, a neurologist? What does your primary doctor say?


Latest Activity: August 20, 2017
4

Comments

L

Thank you for responding hon. I have been to ER, dermatologists many times neurologist with no help except itching mess. Management will not let me bring anyone in either, not that it matters anymore because I am broke. Talked to two attorneys and legal aid and said they do not have funds for this. And attorneys won'the help because they want money. I have spent so much on this, had to give up my two cats. I am at wits end.

Latest Activity: August 20, 2017
3
K

Lainey,
I am so sorry to hear of your current challenges. You have attempted to seek assistance from the right medical professionals. Does your primary care doctor offer any other options for you to get relief? Primary care doc fees are usually much lower than any specialists.

Latest Activity: August 21, 2017
3
L

@Ksmiles123 Hi again...Been there done that. It is so rare for mites to infect a human, that nobody believes it or do not want to investigate further. The apartment management tells everybody that inquires that they exterminated several times, so therefore I am delusional. I have studied mites online and found there are millions of people going through this in the USA. Bird mites.org or the book on amazon, (The year of the mite. ) It was written by a biologist who is also a victim. I have done every thing I could, but now am so broke and in debt that I am sure I am going to die from this.
Yours truly,
Elaine

Latest Activity: August 21, 2017
3
K

Hello Elaine,
Hello! I realize that you have done your research on mites and you know more about mites than we do at this point in time.
I wish there was a relative or someone you could stay with until you can get some relief, answers. Have you reached out to your local board of social services for some extra guidance? Most municipalities have a social services employee in their local health department?

Latest Activity: August 22, 2017
3
L

@Ksmiles123 Hi hon...I have been at my daughter's and niece several times and looking for apartment. I took many belongings with me and found out from the book year of the mite that they get there eggs and larvae get into your clothing and everything. I know it sounds crazy but believe me it is hell and only way to rid myself would be to throw all my belongings away and take just the clothes on my back.I cannot afford to do that. I am really messed up. Thank you for your feed back. You are a nice person.

Latest Activity: August 22, 2017
4
K

So sorry Lainey301 your going thru this must be very frustrating. I have no experience with this mite stuff all I had was bad eczema. I sure hope you can find something to help you.

Latest Activity: August 22, 2017
4
K

Dear Elaine,
I am so sorry to hear out your current situation. Illness impacts one's financial situation greatly.
I wish that there was something we could assist you with. I am sure that you are not the only one who has experienced this. Do the best that you can do, one day at a time.
Some other possible, concrete action steps may show up. I don't know whether or not you are spiritual, but I will keep you in my prayers.
Thank you for your compliment. Please keep us posted.

Latest Activity: August 23, 2017
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L

Thank you hon. And also for prayers

Latest Activity: August 26, 2017
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K

You are most welcome. I had to have a strong faith to keep me going during the most challenging times of my illness. One day at a time.

Latest Activity: August 27, 2017
4
D

Lainey301, I'm so sorry to hear that you're going through this. Don't give up hope, especially if this is affecting your health. There must be a doctor out there who can identify the type of mite to properly diagnose and treat you accordingly. Have you tried calamine lotion to ease the itching? I know it's only a temporary fix, but perhaps it will make you feel slightly better until you can find a doctor who can properly address your needs...?

Latest Activity: August 29, 2017
3
L

@Delia hi hon....I have been going through H--l still. Now have a severe skin infection.whole body.
It is Lichenoid dermattitis and Lymphocytic inflammation...I am sure mites have something to do with this and NTM and also my bronchectasis. Hope you are well. And I think they should study mite relationship to our diseases, birds and rodents at least. Also, not everybody gets bitten or stung by these monsters. Older thin white females mostly, but I noticed on CDC and PUB MED that it is affecting more and more people...younger and males.
Take care

Latest Activity: April 24, 2018
3
D

@Lainey301 So sorry to hear that you're still having a hard time... Have you been able to get on some sort of treatment for the infection? Sending you well wishes!

Latest Activity: May 3, 2018
2
L

I have both of these. I have been bothered by something stinging and severe itching and was sure that there was something in the attic, maybe birds or rodents

or something. My cat was going crazy. Also, they have mites on them and mites only bother certain types of people, like me. Same with NTM. I am older, senior, slender and immune suppressed. I think researchers need to study this connection becuse I was pretty much healthy before I moved to this apartment. Have no proof but i believe that is what caused this infection in me.

Latest Activity: August 20, 2017
19
S

Bird Nesting and debris are the cause of a colonization of Aspergillus Fumagatis (mold) in my lungs. The premier authority on this is Dr. Denning of Aspergillosis Center in Manchester England. I have was diagnosed with Bronchiectsis at the time as well. I am now battling Psuedomonas, and losing. I am seeking the premier care in the US for it now.

Birds carry lots of bacterias, as does compost, water, construction materials, decomposing leaves and so many other things. There is a profuse amount of info out in the big wide world.


Latest Activity: September 27, 2017
8

Comments

b

hi - i have had heavy growth of pseudomonas several times - had iv tobramycin twice - the last time did not work and my id dr said lets try inhalation of tobramycin, 3 weeks, bingo it worked and i have felt good for about 6 months now. have you tried this? no side effects for me, a little tickle in the throat the first couple of inhalations but easy after that, also the side effects are so much less when inhaled as it is not going directly in your blood stream to all your organs....at home treatment....good luck and God Bless

Latest Activity: September 28, 2017
3
M

Bunnyhop! Haven't seen you in awhile. It's nice to hear that you have been doing well. Did you take the leap and move to another part of the country?

Latest Activity: September 29, 2017
4
K

Hi Bunnyhop nice to see you here with us!!

Latest Activity: September 29, 2017
3
b

@Merry hi - no i still live in fl - after my last pseudomonas treatment, i did go to maryland and stayed with my sister for a while before summer set in - it was cooler and dryer than fl and i seemed to do pretty well, but than my sister and brother and i had to make some really hard decisions about my mom - her alziemers was getting worse, so we spent the rest of the summer in fl dealing with her - she is now safely in a memory care unit....this was even harder than dealing with my past illnesses i think...the stress has been overwhelming at times and caused a major flare with my fibromyalgia - because i can not seem to get my pain under control i am starting a vegetarian diet - i have read and watched some documentaries saying that it would help with all the inflammation and fatigue - i am only a week in and will let you all know if it seems to help me - and hopefully the possible side affect maybe that i am a bit healthier and keep some of the other nasties away for a while

Latest Activity: September 29, 2017
4
b

@Kandy thanks - i know it has been a while, busy with some of lifes other issues - things seem to be settling down a bit now and i can catch up with bunches of posts, seems this site is growing which is so good (but sad at the same time that so many suffer)

Latest Activity: September 29, 2017
3
L

They also have mites that can bite humans.

Latest Activity: March 10, 2018
3
L

They need to do more research on the relationship of birds, rodent and mites for our diseases.

Latest Activity: April 24, 2018
3
K

Stacy,


I wish you the best in seeking care. Have hope- there is treatment for Pseudomonas.

Yes, there is so much great information now available on line

Latest Activity: September 27, 2017
4
K

Stacy,

Hello! Below is a link which describes the different drug options used for pseudomonas.

http://emedicine.medscape.com/article/226748-medic...

Latest Activity: September 28, 2017
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