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MAC Without Respiratory Distress with Weight Loss of 25 lbs
I am a 70 year old male. I believe I may have had Mycobacterium Avium Complex (MAC) for years. From November of 2022 until currently I have lost 25 lbs about 5 pounds at a time over about 6 months. I have had and have a good appetite. In others words, I haven't experienced a loss of appetite. I intake a lot of calories daily. I have been evaluated by a Dietician and I don't suffer from malnutrition but rather malabsorption. I am being treated by a Infectious Disease Specialist with Azithromycin, Ethambutol, and Rifamycin 3 times weekly for 9 months. I haven't regained any of the lost 25 lbs. My Infectious Disease Specialist thinks I will regain weight towards the end of my 3 antibioitcs treatment which is many months away. My Infectious Disease Specialist has run numerous blood labs as well as CT Scans and a PET Scan. CT CHEST WITH CONTRAST IMPRESSION: Tree-in-bud nodularity seen bilaterally is suggestive of small airways bronchiolitis. While not diagnostic, the location of findings raises suspicion for nontuberculous mycobacterium infection'. PET/CT Chest Scan 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. It took several Bronchoscopy Culture Washes over 10 months to receive the Results - AFB CULTURE Value Mycobacterium avium-intracellularae complex (MAC) Abnormal.
Last October, my follow up Bronchoscopy Culture Wash didn't
indicate Mycobacterium Avium Complex rather Fungal Results Culture, Fungus Value Scant Growth (1+) Yeast Abnormal Fungal Stain Value No fungal elements seen. My Infectious Disease Specialist prescribed Fluconazole two 7 days dosages that shrunk recurrent cyst behind my right ear, cleared my recurrent toenail fungus, cleared my recurrent white grey tongue fungus but it returned after discontinuing Fluconazole, and improved my weak pelvic floor muscles. My Infectious Disease Specialist emailed me 'The fungal cultures would detect invasive fungal diseases. In the past cryptococcus has not been detected on fungal cultures. At this time you do not have evidence of invasive fungal infection other than yeast infection which the fluconazole should help with.' My Infectious Disease Specialist ordered a LYMPHOCYTE AG/MITOGEN PROFILE blood test that results indicate 'Yes there are some low values on your test that could indicate immune deficiency. Please make a follow up with an immunologist to discuss test in more detail, but it could explain recurrent thrush and yeast infections.' I am consulting with an Immunologist. My Immunologisthas ordered T Cell Fx-Complete and T- and B-Lymphocyte/Nat Killer blood tests. I experience conditions/symptoms of recurrent Tinnitus, Night Sweats, Acid Reflux, Vitamin B12, D, and Zinc deficiencies, burning nerve pain in my arms, chest, legs, and feet. Recently, I watched the YouTube
video titled 'Therapeutic Challenges in NTM/MAC Lung Disease: One Patient’s Journey from Diagnosis to Treatment'. The patient needed a Pulmonologist, Infectious Disease Specialist, Immunologist, Gastroenterlogist, Respiration Therapist, and has Acid Reflux. I have all of the above as well as Immunologist, Hematologist /Oncologist, Rheumatologist but not a Respiration Therapist. I don't have respiratory distress.
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I'm glad to hear that you don't have respiratory distress too.
Weight loss during antibiotic therapy is very common. I lost over 20% of my weight over 20 months, not regaining until after the meds sropped. I managed to stop the loss by sipping hi calorie homemade protein shakes throughout the day. Now after 5 years, my weight is near the upper end of normal, I will accept that in case I become infected again.
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1 ReactionMy 25 lbs weight loss was prior to receiving Azithromycin, Ethambutol, and Rifamycin 3 times weekly 9 months ago. I haven't regained any of the lost 25 lbs.
(as a layman)
I wouldn't assume that the weight loss is associated with the lung
Burning nerve pain!!!!! This could be side effect from Ethambutol. You may need to discuss this with your doctor. I had to stop and swap this drug on the big 3 for those same effects. Now on Clofazimine in lieu of ethambutol.
It isn't a side effect from Ethambutol. I have been experiencing neuropathy, radiculopathy, polyneurophy prior to taking Ethambutol 9 months ago.
Unexplained Weight Loss - 2022 I weighed 148 lbs. - 2025 I weigh 123 lbs.
I am 6 feet 1 inches tall. My BMI is approximately 16.25.
< I wouldn't assume that the weight loss is associated with the lung>
Trust me, I am not assuming that my weight loss is due to my lung MAC infection.
I have told my Infectious Disease Specialist treating for MAC such and she agrees.
She is hoping that towards the end of my 3 antibiotics MAC treatment that I will regain my lost weight.
She ordered a Lymphocyte AG/Mitogen Profile blood test.
Email per Infectious Disease Specialistbased upon the above test results. 'Yes there are some low values on your test that could indicate immune deficiency. Please make a follow up with an immunologist to discuss test in more detail, but it could explain recurrent thrush and yeast infections.'
She had referred a Immunologist.
The Immunologist is unsure as to whether my 9 months on 3 antibiotics MAC treatment is effective.
The Immunologist has ordered T Cell Fx - Complete (Labcorp Only) and T Cell Fx-Complete blood tests.
She has referred me to a Hematologist / Oncologist.
2024 Hematologist / Oncologist's Notes
Plan: Weight loss. This seems to have been an issue over the last 10+ years. Since my last visit with him here, his weight is actually fairly stable. He does appear to have some element of malabsorption but it does not seem to be cancer related in anyway. He has been to multiple specialists.
I have had my TSH bloods tests a number of times by different doctors and they have always been within range.
Dietician - 'We discussed my diet diary. She told me I was eating enough calories and I don't have malnutrition. She said primarily treats diabetics and that she had never had a patient with my unexplained weight loss given I have a good appetite not a lack of appetite.
etc..........
My medical workup is so extensive that it would take Fictional Dr. Gregory House to solve my case.
I am not being facetious.
I am considering creating an entirely new discussion regarding my unexplained weight loss case.
my first idea in your case would have been to consult a GI-specialist
gastro-intestinal
they do these endoscopies, barium-swallow X-ray, CTs,
enzymes-treatment,
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1 ReactionI have consulted several Gastroenterologists who have been uable to determine my unexplained weight loss. I received several Endoscopies and Colonoscopies that were negative. I have been tested by an Endocrinologist and a Gastroenterologist for Celiac Disease. The results were negative.
you probably also had the blood tests
Crohn,Celiac,colitis sound possible to me
https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
Potential causes of unexplained weight loss include
Cancer
Dementia
Dental problems
Depression
Diabetes
Hypercalcemia
Hyperthyroidism
Hyponatremia
Medicines
Parkinson's disease
Previous stroke or neurological disorders
Less common conditions that may include weight loss as one of the symptoms are:
Addison's disease
Alcohol use disorder
Amyloidosis
Celiac disease
COPD
Crohn's disease
Drug addiction
Heart failure
HIV/AIDS
Peptic ulcer
Prescription drug abuse
Tuberculosis
Ulcerative colitis