(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!

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

@windwalker , I hope you don’t mind if I put this answer on our Forum as then it helps everyone!

The nasal spray I get from Mayo is what is called a “compound prescription” meaning the pharmacist actually prepares it themselves. If you doctor prescribes it .. you have to ask a 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.

The nasal spray must be kept refrigerated and is:
Mometasone 0.033%, Ipratropium 0.02%, Diphenhydramine 0.033% Kit

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. Best to you! Katherine

REPLY
@katemn

Melissa, I so understand how tough it is to have not just one but two! Mine was: *MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) (08/07 CULTURE) (09/11 began antibiotic treatment) and then * MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES (09/11)

Mayo Clinic at Rochester MN told me that my second mycobacterium diagnosed in 2011 was the most serious of the two (despite it being classified as a “subspecies”) and that I really must go on the antibiotics after waiting since being diagnosed in 2007.

But be assured .. after being on four antibiotics for thirty months .. I have had negative cultures since May 2014. I am blessed in finding a doctor at Mayo who specializes in MAI.

I won’t kid anyone going through this. I was so sure that all the coughing was caused by the MAI. Ok .. then when I went off the antibiotics in MAY 2011 .. why the horrific coughing?? Then I start researching the Bronchiectasis I also noticed on my medical records but ignored because the MAI was so serious.

Then was told they really don’t know .. chicken/egg scenario. MAI/Bronchiectasis. Which comes first .. which leads to the other? Do you develop Bronchiectasis first .. the mucus stays in the bronchial tubes and becomes a breeding ground for the mycobacterium .. OR does the MAI come first and develops into the Bronchiectasis? The doctors do NOT have an answer.

BUT Bronchiectasis did not seem the only answer because my coughing seemed to be SO triggered by certain things .. to me it seemed like dust .. etc. I then saw an Environmental Pulmonologist at Mayo Clinic who pointed out another thing on my medical record: Reactive Airway Disease. WHAT??? Another thing I had just ignored because of the other pressing medical issues? Yep! Well I was just positive I could get a “quick fix” by seeing an Allergist .. getting two dust mite allergy shots per week for 12-16 weeks and get FIXED!! No more coughing!

Nope! After allergy testing I was SHOCKED to find I do NOT have a dust mite allergy. The wonderful allergy doctor explained it thus: If someone hits you on the head .. you are not allergic to being hit on the head .. you are just reacting to being hit on the head so you have to avoid being hit on the head!!

This was greatly dismaying to me as I wanted my “quick fix” but finally it did make sense to me. I would just have to find a way to avoid dust mites because there is no quick fix for me. I will not bore you with the HUGE effort I have taken but I am now using a multitude of products and procedures .. it has helped but has not eliminated the coughing.

So for those of you still dealing with the beginnings of MAI .. I do not want to discourage you .. but I also don’t want to pretend the journey is without difficulties. What I will say is this .. when I was diagnosed a wonderful person told me: “If we all put our troubles in a great big circle .. more than likely most of us would take back our own troubles.” My husband and I then reminded us that we have not lost a child .. we have not lost a grandchild .. THAT would be a trouble. We will take back our troubles with an attitude of gratitude. I hope you can also. With hugs and well wishes for you all .. I know I have not written in a long time .. my husband is now in Stage 4 cancer .. but doing well so far with a new type of chemo.
Katherine

Jump to this post

Hello! I too have both of these diseases. No fun!

REPLY

Dear All, @apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @boomerexpert, anyone else I forgot to make note of!

Once again in our supportive community .. one of our members has stepped up to the plate and volunteered to Mentor an Advocacy Forum to FIGHT for getting trials for NEW antibiotics for our MAC disease! That member is @boomerexpert! Please thank her! The new Forum can be reached at:
https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=3
I feel confident that ALL of you will support her in this effort as you have supported each other on our shared journey! She will make it easy for you by sharing lab name/addresses/person to address it to .. an outline letter that you can send to the research labs .. BUT you MUST personalize your letter by talking about your OWN personal struggles .. your hardships. Make them see YOU as a human being .. NOT as a statistic or a number!

Again, I want to thank Heather, @heathert , for getting this ball rolling .. for doing so much research! We have some awesome members in our community .. hats off to each and every one of you!

I am grateful to be a part of this community! Hugs to all! Katherine

Liked by heathert

REPLY
@katemn

Dear All, @apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @boomerexpert, anyone else I forgot to make note of!

Once again in our supportive community .. one of our members has stepped up to the plate and volunteered to Mentor an Advocacy Forum to FIGHT for getting trials for NEW antibiotics for our MAC disease! That member is @boomerexpert! Please thank her! The new Forum can be reached at:
https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=3
I feel confident that ALL of you will support her in this effort as you have supported each other on our shared journey! She will make it easy for you by sharing lab name/addresses/person to address it to .. an outline letter that you can send to the research labs .. BUT you MUST personalize your letter by talking about your OWN personal struggles .. your hardships. Make them see YOU as a human being .. NOT as a statistic or a number!

Again, I want to thank Heather, @heathert , for getting this ball rolling .. for doing so much research! We have some awesome members in our community .. hats off to each and every one of you!

I am grateful to be a part of this community! Hugs to all! Katherine

Jump to this post

Kudos to boomerexpert for taking the initiative and to Heather for getting the ball going. Thank you both. Irene

REPLY

@windwalker Hi terri! I have LOTS of notes .. and just found: Also, if you are concerned that you have alpha-1 antitrypsin disorder, take a look at the Alpha-One Foundation – there’s a lot of information at that site – your doctor can order a blood test to test if you have alpha-1 – since you have bronchiectasis, I am rather surprised that it hasn’t already been done –

I know you have an interest in the Alpha 1 gene .. I did not pursue it .. perhaps you would like to? So far this is the only thing I found in my notes about the gene .. it was in reference to Bronchiectasis not 23and me. Hugs! Katherine

REPLY
@katemn

@windwalker Hi terri! I have LOTS of notes .. and just found: Also, if you are concerned that you have alpha-1 antitrypsin disorder, take a look at the Alpha-One Foundation – there’s a lot of information at that site – your doctor can order a blood test to test if you have alpha-1 – since you have bronchiectasis, I am rather surprised that it hasn’t already been done –

I know you have an interest in the Alpha 1 gene .. I did not pursue it .. perhaps you would like to? So far this is the only thing I found in my notes about the gene .. it was in reference to Bronchiectasis not 23and me. Hugs! Katherine

Jump to this post

Hi Terri, WOW .. I was just looking for something else in my notes and found another thing .. keep in mind I was diagnosed I 2007 and have been trying to understand all this “stuff” ever since .. AND keeping track of it so I have reams of notes!! So here is the second reference I found:
[10] Patients with alpha 1-antitrypsin deficiency have been found to be particularly susceptible to bronchiectasis, for unknown reasons

Interesting!! Katherine

REPLY
@katemn

Boomer, what my husband’s Oncologist has told us is that Imbruvica either works front end for a patient .. or it does not. Luckily for my husband it REALLY has .. he has now been on it for two years and doing very well. My understanding of it is that with single drug use has been the most safe .. the most problems have come with combination drug therapy. Luckily my husband’s Oncologist was smart enough to go single drug and all has been well. .. and yes my husband was Stage 4. BUT due to this therapy.. I’m KEEPIN” that fella around! Katherine

Jump to this post

he’s the perfect candidate for this type of treatment…and it’s working w/no side effects…yay!

REPLY
@maryjo2sell

Hello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same “cocktail” as many in this forum. I recovered and felt very well…until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much “stuff” as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!

Jump to this post

Hello Mary Jo, Welcome to our Forum .. so glad you found us! Well, I had to google Kansasaii .. a new one for me! I found:
“M. kansasaii disease tends to occur more in patients with underlying emphysema giving rise to more cavities and often a tree in bud.” .. am I on the right track? Question: Did you have ” underlying emphysema” .. or did your disease come out of the blue? Just curious.

No, people with MAC do not automatically have Bronchiectasis. But it IS very common. In fact my doctor at Mayo Clinic said it is a bit of a chicken/egg thing. They really don’t know which comes first: Bronchiectasis/MAC/GERDS .. it could be either/or. I was diagnosed with BOTH Bronchietasis AND MAC at the same time. Who knows which one was first. Frankly I don’t much care .. I just plain have to battle BOTH!

I really know zero about Mycobacterium kansasii but if I was you I would be very concerned if a doctor told me my Mycobacterium was “gone”. At least I know that my particular form of Mycobacterium (Avium) are sneaky little critters that can be “stabilized” but NOT CURED/”gone”. If I was sitting in your shoes I would seek out a: INFECTOUS DISEASE DOCTOR. They specialize in our kind of disease. They are also Pulmonary doctors .. you can’t go wrong with one of those. Personally I can’t recommend one but check out this link .. Mayo Clinic has a clinic in Florida .. I think it would be WELL worth it to drive if you must! Mayo works as a team .. they can consult with the very BEST doctors in Rochester MN if need be. That is where I go and boy was I glad to find them!! Check out this link:
The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

Or maybe someone on our Forum can recommend a doctor somewhere else in Florida? Please jump in and help if you can!

Please do send this link to your Aunt .. she will find SO many kind supportive people who will support her on our shared journey! BUT
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182
BUT keep coming back to our Forum yourself if you’d like .. after all Mycobacterium kansasii is similar to MAC .. you certainly are welcome! Hugs to you! Katherine

REPLY
@melissa23

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

Jump to this post

Rifampin

REPLY

@melissa23 .. Melissa, I have thought of you so often! Where/how are you?! Just wondering .. if it is not too much trouble .. could you just give us a quick update on how you are doing? Then we won’t worry about you .. it’s been too long! Sending you a hug and hoping all is well! Katherine

REPLY
@katemn

Dear All, @apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @boomerexpert, anyone else I forgot to make note of!

Once again in our supportive community .. one of our members has stepped up to the plate and volunteered to Mentor an Advocacy Forum to FIGHT for getting trials for NEW antibiotics for our MAC disease! That member is @boomerexpert! Please thank her! The new Forum can be reached at:
https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=3
I feel confident that ALL of you will support her in this effort as you have supported each other on our shared journey! She will make it easy for you by sharing lab name/addresses/person to address it to .. an outline letter that you can send to the research labs .. BUT you MUST personalize your letter by talking about your OWN personal struggles .. your hardships. Make them see YOU as a human being .. NOT as a statistic or a number!

Again, I want to thank Heather, @heathert , for getting this ball rolling .. for doing so much research! We have some awesome members in our community .. hats off to each and every one of you!

I am grateful to be a part of this community! Hugs to all! Katherine

Jump to this post

@boomerexpert Thank your for all you are doing! It is so important that we advocate for ourselves and others.

REPLY
@maryjo2sell

Hello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same “cocktail” as many in this forum. I recovered and felt very well…until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much “stuff” as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!

Jump to this post

Hi Katherine, thank you for the reply. I was treated for the Kansasaii by a infectious disease doctor for over a year. I had to stop the treatment because of liver issues. He hoped the micro bacteria was gone. I had no more trouble for many years. When I did have the bronchoscope done in 2009, the pulmonary doctor found no Kansasaii. However the disease had ruined my lungs. I did have staph at that point. Right now if I go to the emergency room for anything, when they do a lung X-ray, they want to send me to a TB room! It has happened. I carry the info around showing I just have scars. I hope that the patients on this forum have good doctors. You are right- they are hard to find! There are few that know MAC and less that know bronchiectasis. It can be such a rough road and you need to be your own advocate! Thank you for helping so many find the help they need!
Mary Jo

REPLY
@maryjo2sell

Hello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same “cocktail” as many in this forum. I recovered and felt very well…until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much “stuff” as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!

Jump to this post

Hi Mary Jo, what a rip about the liver issues .. it certainly can happen!

I agree about traveling with info on your disease! I ALWAYS travel with a little brochure put out by the NTM about MAC just in case .. but your info about “if I go to the emergency room for anything, when they do a lung X-ray, they want to send me to a TB room!” is REALLY good info for our Forum! Thank you! Since I have not been in a hospital since my two children were born .. I had not given this a thought .. GOOD info to share!

Mary Jo, keep coming back to our Forum .. we are all this journey together .. helping each other! Hugs! Katherine

REPLY
@katemn

Dear All, @apportee, @bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @margaretg .. Margaret, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @boomerexpert, anyone else I forgot to make note of!

Once again in our supportive community .. one of our members has stepped up to the plate and volunteered to Mentor an Advocacy Forum to FIGHT for getting trials for NEW antibiotics for our MAC disease! That member is @boomerexpert! Please thank her! The new Forum can be reached at:
https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=3
I feel confident that ALL of you will support her in this effort as you have supported each other on our shared journey! She will make it easy for you by sharing lab name/addresses/person to address it to .. an outline letter that you can send to the research labs .. BUT you MUST personalize your letter by talking about your OWN personal struggles .. your hardships. Make them see YOU as a human being .. NOT as a statistic or a number!

Again, I want to thank Heather, @heathert , for getting this ball rolling .. for doing so much research! We have some awesome members in our community .. hats off to each and every one of you!

I am grateful to be a part of this community! Hugs to all! Katherine

Jump to this post

We’re in this together…and together we’ll make sure we get better care! Hey, let’s start our own version of the ice bucket challenge! Just no ice, please… 🙂

REPLY

I don’t know if i am posting correctly! here goes. I am 76 year ol lady! Was hospitalized last Oct …. x-ray showed NADA. i do have COPD. For five days was treated with MASSIVE steroids. Hospitalist ordered CT/contrast …… sent me home on the Fri. after test saying it showed nothing and i was not getting welll there. So …. was sent home with MORE steroids. Could NOT function. AT follow up with MY N.P., she said the Ct showed
both lungs had pneumonia. She sent me to Pumonary Dr. He ordered a sputnum test. (they also did one in hospital but said nothing about it.)
Six weeks later, Dr. Pulmonary called me to come in …. told me i had Macobacterium Nebraskan….i do not remember how to spell it. His office staff left nothing to be desired … so when he made appointment with Infectious Disease doc at Novant in Winston Salem …. I live 34 mins away … I went myself to get discs, etc etc. Dr. Priest at Novant ….. even WITH directions from hospital could NOT pull up the CT himself. However he said the notes showed nothing signifigant. and dismissed me. I had of course by now on my own stopped the steroids. I was on Levaquin in hospital.
Now nausea was rendering me useless. On an intuition, saw ENT doc here in my hometown. He ran camera down my nose …. could not see any
infection but felt there was on and he put me on a hi powered antibody … Vantin? something like that. After prescribed time … no better. Still coughing up suds, pain … so went back to him. This time he did a sinus CT. showed very deep pervasive infection. Put me on rounds of 3 different antibiotics
with baby dose of steroid …. for six weeks. In the midst of the last round …. the nausea began to abate. and i DID get much much better … until ……….
began to experience upper respiratory symtoms again early November of this year. so bad on a weekend …. went to Urgent Care. would NOT inhale steroids ….. xray showed nothing … accepted Albuterol inhaler and Levaquan. sp? The following Monday kept a pre op apt at hospital for hip replacement the 19th of this month. I continued to get worse however. Was working with scheduler nurse at Orthopedic surgeons’s office …… followed through with next pre op appt. bloodwork slightly … very minor .. off …. everything else ok. no MRSA .. urine fine. When Lisa (wonderful woman
from Ortho) called me with results she could clearly hear i was not well. Intervened and got me into see MY N.P. She took one look and said OH MY! HO! told her i wished to go on with surgery but wasn’t sure i could and she and I are going to make decision together. She immediatly took me off
Levaquin .,.. put me on Arithro .. zpak and again … baby dose of steroid which i am tolerating. She had done a little research into the MAC i have
and finally said ….. NO … to surgery. So … it is postponed. I absolutely do NOT KNOW WHAT TO DO NEXT.
The Dr. i saw in winston salem at Novant, Dr. David Priest had given the go ahead for surgery. We now have a new Pulmonary Dr. here in Elkin where i live. My N.P. said she did not think a CT/wcontrast would telll if pneumonia or MAC and my bloodwork did not call for CT. BUT … she is now wondering if that is what i had a year ago. ??????????????????????? Having had paralytic polio when young …. was several years ago i learned about Post Polio Syndrome. Verified by docs and spinal fluid. Fatigue is a part of PPS …. as is pain, etc …… but i can cope with that. I meditate ….
exercise … have wonderful caring friends .. have been an activist all my life but no longer.
Any ideas folks? There has been a dreadful upper respiratory virus going round here ……. it is just so hard to figger out what is tit and what is tat!
I do MAKE myself MOVE. But the fatigue is awful. and i do hurt in right lung area with this. probably all the coffing!!!!!!!!!!! ??????????
One question i do have is …. can “dese bugs” migrate? Is that a sensible question? I quit the FLucotinase…sp? Zycam spray seems to help
much better. I was told that many people are walking around with this particular MAC and don’t even know it. The first doc who found it said i could have gotten it anywhere. I garden assiduously and he thot probably there ….. as am inclined to continue working if i get poked er scratched er whutevah! Have to work on my bum because legs are not strong enough anymore from PPS. whatta mess! HO!
I do know that without HUMOR ….. none of us could put up with whatever it tis that we deal with. That and meditation are my go to AND
i do exercises in the hot water of the BATHTUB!!!!!!!!! It CAN be DONE! hO! Thank you for taking the time to read this if i can figger out how
to get it to stick! nelisabeth

REPLY
Please login or register to post a reply.