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Mar 6, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Ehliny, I saw your post earlier about the twice-daily saline solution treatments to induce coughing. Other than going to the Army clinic to inhale the saline solution to produce sputum cultures for them (because they thought I was perhaps cheating on my sputum tests or something). I am happy to say that I do not have to do the nebulizer on any type of regular basis. But it was a bittersweet victory of demonstrating my proof to the Army docs that it was my own true sputum producing the MAC, I was also coughing up blood because the saline was irritating my airways. This episode was 08-11FEB16, and on 25FEB – the first culture had already come back POS for MAC.

My pulmonary doctor at UNC had suggested a flutter device to help break up the congestion in my lungs. I still find that exercise (even walking) works BEST.

To your next comment about treatment – MAC is essentially an emerging disease in that the symptoms and total body effect are far-reaching and may at first be subtle or severe. Mycobacteria has no place in the human body – this species is among that which causes tuberculosis and leprosy. Although M. avium is different, a relative to these more aggressive species of mycobacterium, it is just as dangerous it its own right. If you have tested positive for MAC, and your providers are hesitant (or ignorant about mycobacteria avium colonizing within your body) on developing a treatment plan to eradicate the fungus-like infection in your lungs – other than just trying to have you cough it up – you need antibiotics.

I have been in contact with my Congressman for nearly eight months now to get back on the antibiotics that my Army doctors stopped after only five months of treatment (with only 2 antibiotics). All sources say three to five antibiotics for 12-18 months of treatment with life-long follow-ups. There is a bounty of information out there about MAC. The National Institutes of Health is a good source. My doctor at UNC said some of the patients that come into his office for MAC treatment do not partake in the antibiotic treatment, that some sub-species of MAC have become too resilient to antibiotic treatment and the infection cannot be stopped – but managed with exercise, diet, productive coughing, etc. When the symptoms such as fevers, night sweats, or blood-work anomalies are introduced or in occurrence with the infection your treatment must be re-evaluated.

I hope this helps.
Best wishes,
Yours truly,
Melissa

Feb 12, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Paula,
Yes I agree. What makes it worse is that they would not accept my sputum that I cough up on my own first thing in the morning. When I went in yesterday to the Army hospital to produce their third requested sample, I brought a sputum sample with me coughed up just an hour before (in a sterile cup given to me from UNC) that they would not accept. So I endured another twenty minutes of deep breathing of the saline solution and coughing in the watchful eyes of the technician… I was terrified to see that I began coughing up bright red patches of bloody sputum….

My lungs were burning and my ribs have been hurting so bad from the forced coughing at WAMC (in addition to my regular coughing) plus the two breathing tests. I told the Army technician that I do not trust them for making me go through the forced/induced sputum tests three days in a row and not accepting my first morning sputum cultures for sampling (she just raised an eyebrow).

One more thing, in review of my UNC visit notes, the doctored changed by diagnosis from MAC to Mycobacterium avium-intracellulare infection… A different species of M. avium… I will gather more clarity on this as time passes.

May the Force be with YOU all.

Melissa

Feb 10, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you Ladies. My appointment with the UNC Pulmonary Clinic went very well. The doctors and technicians were awesome, insightful and offered some insight into my condition that was being overlooked. I am immediately being tested on their end from my sputum (non induced) for AFB and my spirometry / pulmonary function tests show a significant decline compared to tests that were conducted in AUG of 2015. With the production of sputum (which is most likely still AFB positive), along with the CT and X-ray imaging they reviewed showing progression of scarring/nodules, etc. from 2011 – 2014 (the disc did not have any 2015 images on it) I was once again officially re-diagnosed with a MAC infection. The problem now lies in the potential that the MAC is now resistant to the antibiotics. So…. A test is going to be conducted on the sputum to measure its resistance to the antibiotics. I follow-up in May to most likely resume antibiotic treatment. In the meantime, I will continue with exercise and begin the use of a ‘flutter device’ to assist in getting the phlegm out of my lungs.

Next week I see the ID doctor at UNC and I will take more sputum to that appointment for analysis >_< More to follow. Hope everyone is breathing well and ready for Spring! Best wishes to all. Melissa

Feb 9, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Further to the induced sputum testing that I am undergoing at the military hospital (on a daily basis, because they won’t accept my sputum that I readily produce on my own first thing in the morning when I awaken) I came across a pamphlet from the DoD titled “Speak Up!” …. and that is what I did. I composed a letter to the hospital administrator, my primary care manager and the patient advocate supervisor essentially demanding that they blow their noses and smell the roses 🙂

I feel as though I cracked a rib or a vertebrae yesterday with all of the forced coughing, back pounding, and thirty minutes of inhaling saline solution and they want me to do it again today. Of course none of these individuals have responded to me yet, but I also BCC’ed by Congressman’s office on the e-mail. I invested in a back brace for my thoracic cavity in addition to the lumbar brace that KateM recommended sometime ago. If it had not been for these two apparatus, I would not be sitting up straight this morning. Too make matters worse, I am suppressing all coughs this morning so that I can just march in there, produce a sputum sample then leave – my lungs feel so heavy and burdened.

THANK YOU COLLEEN for your response! I believe I have my questions in order for my appointment with UNC tomorrow. They are starting with a breathing test before I see the doctor. From there I hope to review my CT and X-rays with them for their definitive opinion of my condition based on these along with my documented clinical signs (cough, fatigue, fever, night sweats, dyspnea) and the 15+ positive AFB sputum cultures/smears over the past year. These are the standards for diagnosing a MAC infection according to the American Thoracic Society / Infectious Disease Society of America –

I plan to ask:

Is there are any other Criteria for diagnosing MAC Infection vs. Colonization?

Is Colonization of MAC just ignored if Radiographic results slowly evolve with demonstration of growth?

What effect would the treatment of five to six months of Isoniazid (for the misdiagnosis of TB) have on Mycobacterium avium?

What effect would treatment of five months of Azithromycin and Rifampin have on MAC if treatment with the same drugs were to resume nearly 7 months to a year later?

Would a MAC infection cause an extremely elevated Ribonucleoprotein (RNP) result and positive ANA? (As professed by my military doctors)

Has the damage in my lungs progressed since the first imaging of 2011 compared to the imaging of 2015?

What genetic tests can be performed to understand my susceptibility to MAC since I am NOT HIV+?

Do I have a deficiency of IFN-gama and TFN-alpha production and/or the absence or defects of IFN-gama receptors?

Does UNC have access to a enzyme immunoassay (EIA) kit to detect serum IgA antibody to MAC-specific glycopeptidolipid core antigen? (useful for serodiagnosis of MAC pulmonary infection)

What effect would high titers for certain viruses (i.e. Coxsackie B -left untreated by the Army) have in conjunction with MAC? – I have had two heart catheter ablations and left with medication that does not work and only inflames my Raynaud’s disease.

Do I have scoliosis, pectus excavatum, or straight back? – skeletal markers for pulmonary MAC infection.

Why would a BAL be performed of only one lung (and not both) during a bronchoscopy?

Is it imperative to determine what species of Mycobacterium avium I have, Mycobacterium avium or Mycobacterium intracellulare.for proper treatment? Furthermore, is properly identifying the subspecies then of importance for treatment? “The one most likely to cause disease in humans is M avium subspecies hominissuis” followed by M avium subspecies avium, then M avium subspecies paratuberculosis, and finally Mycobacaterium intracellulare (Kasperbauer, & Daley, 2008)

These are some of the questions I have for my team of doctors (Rheumatology, Pulmonary disease and Infectious disease) at UNC, that I will address.

If anybody can think of others, please advise. THANK YOU 🙂

Best wishes,
Melissa

Feb 7, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Colleen. I am about to be undergo another round of sputum cultures in a ‘unorthodox military setting’ to see if I am still producing positive AFB compared to my last round of cultures which were performed in May 2015 (they were all positive). My most recent CT Scans (July 2015 without contrast) evidences ‘tree in bud opacity/branching nodular densities in the superior segment right lower lobe’ with no “new nodules” compared to the 2014 CT Scan which did NOT have tree-in-bud opacities, but did “redemonstrate biapical chronic lung changes” from 2011 CT Scan, “reticulonodular, interstitial, pleruparenchymal opacities in both lung apicies”.

I am dealing with people down here who have no clue what MAC is and are too proud to admit that they have no idea how to identify or treat it. They only treated me with two antibiotics almost five months before taking me off of them. This was all after a TB misdiagnosis following a 21mm PPD in 2011, and treatment with Isoniazid for nearly 6 months, further building the resistance of the Mycobacterium avium to the proper treatment.

I have written my Congressman, Thomas Massie in Kentucky, for a review of my condition and to “Trust but Verify” the claims and treatment (the lack thereof) by the Army MEDCOM providers. To date, I have been able to secure a second opinion with an insurance authorization to have: ONE appointment with a Pulmonary Disease doctor and ONE appointment with an Infectious Disease doctor both at UNC in Chapel Hill.

Based on your experience, is there really anything that can be accomplished in ONE appointment for a MAC infection? What do I need to ask these doctors to do that the Army medical team is not doing?

The Army has provided me with Reports but NOT imaging of my most recent CT Scans, so that I can take them to the appointments. I will also take all blood work and sputum results with me to the appointments.

Thank you for any guidance you may be able to provide.

Very respectfully,
Melissa

Nov 5, 2015 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello ALL! It turns out that following my JUN2015 I had CT Scan and visit to Walter Reed Hospital the ARMY lied to me…AGAIN. THis time I imagine it is because they initiated medical separation because of my Raynaud’s Disease and did not want to compound their obligation because of the MAC I contracted during my Time in Service. The 12JUN15 CT Scan w/o contrast was explained to me by one CPT Micha Koren (most likely an intern at Walter Reed who has never seen MAC) as clear and with no evidence of active MAC. #1 Active MAC (according to NIH, MAYO, etc.) is classified not only by imagery results but moreover by Positive AFB Sputum Cultures! #2 My 12JUN15 CT Scan demonstrated “small focus of tree in bud type opacity/branching nodular densities in the superior segment right lower lobe”. Of course I find this out ON MONDAY NOVEMBER 02 2015! But it gets worse. The 12JUN15 CT Scan also revealed “Several stable too small to characterize hypodensities in the liver” which were not on the NOV 2014 or any other CT Scans. Fast forward to the 03SEP15 CT Scan and the former ‘hypodensities in the liver’ have evolved into “hypoattenuating, hypoenhancing cystic lesion in the left lobe of the liver”. Of Course when I followed-up with my Pulmonary Disease doctor (another Army doctor) on 16JUL, 13AUG, 01SEP and a telecon on 30SEP I was told that all was “clear” that my CT Scans were Normal.

Furthermore, they detected that I had fractured a Rib (most likely from coughing – thus the rib cage pain that I had discussed earlier in the post) and told me nothing of this either. I found out about this when I received my filing from the Physical Evaluation Board on 02NOV15 as well.

Today I am scheduled for a cervical biopsy. 43 days ago they detected a-typical cell growth in a PAP. Of course they did not call me to tell me. I had to go to my Congressman and Patient Advocacy to get the Results and Get the Appointment. It is the day of the procedure and as of this moment, they (Army MEDCOM) still has not called in the pre or post-procedure medications for me to take.

My Son left the Military, fulfilling his Duty and is now back in his Home of Record serving with the National Guard. He left Ft. Drum with a fractured femur, a torn ACL, he was hospitalized numerous times for Rhabdomyolysis, and probably many other things that I will never know about. My point here is off of the MAC discussion and on to the point that I believe the Army is trying to KILL ME – why else would they stop life saving treatment?

Oct 15, 2015 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Good day Chaac2272, Where is your Husband being treated? My sputum was tested for drug resistance back in April 2015… and the results were ‘inconclusive’. There are several strands of MAC and therefore most doctors lump them under the category of MAI, and sometimes erroneously conversely. Has your Husband been tested for Alpha-1 antitrypsin deficiency? THis is an autoimmune disease that would explain why his Liver and his Lungs are being attacked and why his immune system is weakened, and unable to fight off the mycobacterium. If not, Start there. Ask your doctors to perform this genetic test.
Best wishes,
Melissa

Oct 15, 2015 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you Katherine for the heads up on the lumbar / S1 support belt. It is in my Amazon Cart now! 🙂 I will also be looking for a lumbar support for my computer chairs for home and at work on Post, as I spend too much time in front on computers >_< on a daily basis. And James I am happy to hear that you have a 'Rock' and some friends to support you. What kind of Volunteer work do you enjoy? Having experience with persons who are afflicted with Cyclothymia, I know that two that are currently taking nothing but I believe it is 'Gaba' or/& a Theanine combo. One person with whom I have had contact with for years, has told me that the Theanine brand from Natrol available through the Vitamin Shoppe on-line is the BEST, Best wishes to ALL, With Love, Melissa