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Disseminated MAC infection
I am a thin (BMI from 20.50 droppped to 16.25) elderly Caucasian male who has never smoked.
In my past, gardened with potted plants soil, exposure to hot tubs, and showered with a dated shower head.
I have likely had MAC for several years before being diagnosed with MAC a year ago.
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2023 PET/CT Chest Scan Findings: Abnormal focal tracer uptake in ill-defined centrilobular nodules and patchy opacities in the anterior left lung base/lingula, and to lesser extent in the left perihilar and anterior inferior right upper lobe nodules. ordered by Infectious Disease Specialist
Reference: Lingular opacities: SUV max 6.4 - Anterior right upper lobe opacities: SUV 2.2
Impression: hypermetabolic bilateral lung opacities left greater than right. Though the level of uptake is above malignant threshold, overall morphologic appearance favors infectious/inflammatory etiology.
2023 CT Chest with Contrast - Impression: Tree-in-bud nodularity seen bilaterally is suggestive of small airways bronchiolitis ordered by Infectious Disease Specialist
2024 CT Angiography of Chest ordered by Cardiologist
Impression: 2. Interval development of groundglass opacities in the lower lungs with asociated early fibrotic change.
Ground-glass opacities (GGOs) in the lungs can indicate various conditions, Infections, Interstitial Lung Diseases, or Even Cancer.
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For a year, I have been on Azithromycin, Ethambutol and Rifamycin 3 times weekly.
I don't have a cough or having a breathing difficulty nor a lack of appetite rather I am hungry with a good appetite.
I continue to experience chronic symptoms of intermittent night sweats, fatigue, weight loss, and aches and nerve pain in my biceps, chest, legs, and feet with numbness and tingling as well as tinnitus.
The medications used to treat MAC that are macrolides like Azithromycin and clarithromycin, can cause ototoxicity, leading to tinnitus.
Though I began experiencing tinnitus prior to 2024 when I began taking Azithromycin to treat for MAC.
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I have consulted with 3 Rheumatologist and their opinions are my inflammatory pain isn't related to a Rheumatoid disorder.
The most common cause of unexplained weight loss is cancer.
Other possible causes include hyperthyroidism, heart failure, Addison's disease
2022 I received a Cortisol test from an Endocrinologist. I was diagnosed with Addison's disease. I am taking a daily low dosage Hydrocortisone (Cortef) tablet.
2023 My inflammatory pain following a bronchoscopy where I received intravenous Dexamethasone, among several other medications procided 95% relief of my biceps, chest, legs and feet inflammatory nerve pain. My nerve pain is severe enough that it does not respond to Neurontin or Cymbalta, Predsione.
2024 Hematologist / Oncologist Exam Notes: He does appear to have some element of malabsorption but it does not seem to be cancer related in anyway.
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The National Jewish Health in Colorado is often referenced regarding MAC diagnosis and treatment,
The Texas Medical Center in Houston offers comprehensive treatment for a wide range of lung diseases.
Has anyone been referred the Texas Medical Center in Houston regarding MAC diagnosis and treatment?
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My concern is perhaps the 3 antibiotics aren't effective and that my inflammatory muscles and nerve pain is due a Disseminated MAC infection.
Has anyone been diagosed with Disseminated MAC infection?
If so what were the diagnostic tests and medical specialists involved?
Thank you for any replies to my post.
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@vipp When you were diagnosed with disseminated MAC, did they specify whether it was dispersed in your lungs or "extra-pulmonary" - outside the lungs?
If you are in Texas, the best location for MAC treatment is the University of Texas - Tyler, where they specialize in treating MAC & Bronchiectasis.
Disseminated MAC is among the rarest of the NTM infections, and I doubt of anyone outside to the Bronchiectasis Care Network, which includes UT-Tyler and NJH as well as Mayo, has much if any experience treating it.
You can look for care here:
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center
Good luck finding the best answers for your tough situation!
< When you were diagnosed with disseminated MAC, did they specify whether it was dispersed in your lungs or "extra-pulmonary" - outside the lungs?>
I haven't been.
< If you are in Texas, the best location for MAC treatment is the University of Texas - Tyler, where they specialize in treating MAC & Bronchiectasis.>
I do live in Texas and I am aware of University of Texas - Tyler.
Thank you for your response to my inquiry.
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Actually, in doing more research and looking through my medical records even though I have the symptoms related to a Disseminated MAC Infection my blood labs don't indicate such.
Mycobacterium avium complex (MAC) can cause a range of symptoms, including muscle inflammation. While MAC typically affects the lungs, it can also disseminate and cause infections in other parts of the body, including muscles. Symptoms like muscle pain and inflammation, particularly in the biceps, chest, legs, and
feet, can occur as part of a disseminated MAC infection. Mycobacterium avium complex (MAC) can cause infections that may contribute to neuropathic conditions.
Typically, HIV-negative people will have a CD4 percentage of 30% to 60%,
The Well Project. Understanding CD4 cells and CD4 tests. while HIV-infected people's CD4 percentage can be as low as 25% or less. Clearly, the higher the percentage, the more robust the immune response.
I thought perhaps my inflammatory muscles and nerve pain is due a disseminated MAC infection.
But my HIV-1/2 ANTIBODY = NEGATIVE and my CD4 % Value 57 High and my CD4/CD8 ratio Value 4.48 High is not indicative of a Disseminated MAC Infection.
Therefore it is still undetermined as to cause of my muscle and nerve inflammation.