Presentations recorded at the World Bronchiectasis Conference. I Have NTM Infection (MAC/M Abscessus): What are My Options?, Julie Philley, Saturday, 2:45pm.
I have Mac histoplasmosis blastomycosis and valley fever and I don't have aids or HIV, I did have Lyme disease and rocky mountain spotted fever the year before I got sick. The antifungal, itraconazol hasn't made a difference in two years so they took me off of it and the three antibiotics were hard core hell and my body can't take it so they told me to stop them and tomorrow I have to get blood work done to test the toxicity in my body. So, now what? After the antibiotics, I feel worse than I had before. People need to know to test for these because two years were lost as dr.s thought that an x-ray was all that was needed and they misdiagnosed me with pneumonia. Take care of yourself and each other.
mycobacterium are a very difficult diagnose. Even when diagnosed it can take months of i.v antibiotic treatment if not a couple of years. A good idea to look into yogurt, kefir, and/or culturelle to promote healthy gut bacteria. Killing off of bacteria can also promote proliferation of fungal infections. In regards o fungal infections. Instead of the itraconazole, there is terbinafine (antifungal) there are studies that show at 500mg taken at one time has more benefit as opposed to two 250mg, each taken 12 hours apart. there are also studies which indicate that a mix of terbinafina and itraconazole is a combination that can also lead to better results. in regards to mycobacterium, where there was resistance to some antibiotics, the use of vitamin c (can be given i.v, or look for the lyposomal variety) was able to affect the biofilm of the disease and antibiotics started working again. "(Taneja et al., 2010; Albeldas et al., 2018). In the same experiment, Vilchèze, Hartman, and colleagues found that high VC concentrations kill drug-resistant and drug-susceptible TB cells and prevent the spread of drug persisters. Additionally, they found that after four weeks, M. tb. cells became inactive when a sub-lethal dosage of VC was coupled with the first-line antitubercular drug isoniazid (INH). No mutations that could withstand therapy were found." Research can be found under google search : "A pro-oxidant property of vitamin C to overcome the burden of latent Mycobacterium tuberculosis infection: A cross-talk review with Fenton reaction" NCBI article (National Center for Biotechnology Information). if you have wound areas look into having it/them surgically excised from the edges inwards.
I am sick of suffering from Mac. I never feel well. The big three make me sick to my stomach. The abs are the least of this disease. Mac itself is the cause of endless suffering. . This horrid disease is extremely slow to respond to medication. . I don’t have sputum even with nebulizing three percent saline and Levabuterol. I cannot be monitored by sputum testing. I had an alveolar hemorrhage during my bronchoscopy , so I’m not doing that again. I almost died and spent two weeks in a hospital because I could not breathe. When I got out I couldn’t even stand up. After five months of treatment I am only somewhat better. I’m tired of doctors trying to put a good spin on any of this. It sucks in every way. Where I live in LA I have found no pulmonologists who specialize in ntm. Can you image one of the biggest cities in the US having no ntm specialty clinic? The whole experience makes me very angry and depressed. 😢
Update about my wife, the insurance will not pay for the Amikacin "$14,000 a month" until her last sputum test comes back, her last treatment was the end of January, the pulmonologists wanted to keep her on it till 10/2024 1 year, we lived in CA. till 2019 we moved to FL. Doc. office is not very good keeping her in the loop, she doesn't have aids or HIV, she wasn't diagnoses with Mac till 1/2022 they said she's probably had this for years " miss diagnosed for many years.
My wife has been diagnosed with MAC, she’s been taking the 3 antibiotics now for about two years, Mac has not gotten worse or better, the doctor had her have a Bronchoscopy, after having another chest X-ray he put her on Amikacin, it’s been 3 months!
I have Mac histoplasmosis blastomycosis and valley fever and I don't have aids or HIV, I did have Lyme disease and rocky mountain spotted fever the year before I got sick. The antifungal, itraconazol hasn't made a difference in two years so they took me off of it and the three antibiotics were hard core hell and my body can't take it so they told me to stop them and tomorrow I have to get blood work done to test the toxicity in my body.
So, now what? After the antibiotics, I feel worse than I had before.
People need to know to test for these because two years were lost as dr.s thought that an x-ray was all that was needed and they misdiagnosed me with pneumonia.
Take care of yourself and each other.
mycobacterium are a very difficult diagnose. Even when diagnosed it can take months of i.v antibiotic treatment if not a couple of years.
A good idea to look into yogurt, kefir, and/or culturelle to promote healthy gut bacteria.
Killing off of bacteria can also promote proliferation of fungal infections.
In regards o fungal infections.
Instead of the itraconazole, there is terbinafine (antifungal) there are studies that show at 500mg taken at one time has more benefit as opposed to two 250mg, each taken 12 hours apart.
there are also studies which indicate that a mix of terbinafina and itraconazole is a combination that can also lead to better results.
in regards to mycobacterium, where there was resistance to some antibiotics, the use of vitamin c (can be given i.v, or look for the lyposomal variety) was able to affect the biofilm of the disease and antibiotics started working again.
"(Taneja et al., 2010; Albeldas et al., 2018). In the same experiment, Vilchèze, Hartman, and colleagues found that high VC concentrations kill drug-resistant and drug-susceptible TB cells and prevent the spread of drug persisters. Additionally, they found that after four weeks, M. tb. cells became inactive when a sub-lethal dosage of VC was coupled with the first-line antitubercular drug isoniazid (INH). No mutations that could withstand therapy were found."
Research can be found under google search :
"A pro-oxidant property of vitamin C to overcome the burden of latent Mycobacterium tuberculosis infection: A cross-talk review with Fenton reaction"
NCBI article (National Center for Biotechnology Information).
if you have wound areas look into having it/them surgically excised from the edges inwards.
I am sick of suffering from Mac. I never feel well. The big three make me sick to my stomach. The abs are the least of this disease. Mac itself is the cause of endless suffering. . This horrid disease is extremely slow to respond to medication. . I don’t have sputum even with nebulizing three percent saline and Levabuterol. I cannot be monitored by sputum testing. I had an alveolar hemorrhage during my bronchoscopy , so I’m not doing that again. I almost died and spent two weeks in a hospital because I could not breathe. When I got out I couldn’t even stand up. After five months of treatment I am only somewhat better. I’m tired of doctors trying to put a good spin on any of this. It sucks in every way. Where I live in LA I have found no pulmonologists who specialize in ntm. Can you image one of the biggest cities in the US having no ntm specialty clinic? The whole experience makes me very angry and depressed. 😢
Update about my wife, the insurance will not pay for the Amikacin "$14,000 a month" until her last sputum test comes back, her last treatment was the end of January, the pulmonologists wanted to keep her on it till 10/2024 1 year, we lived in CA. till 2019 we moved to FL. Doc. office is not very good keeping her in the loop, she doesn't have aids or HIV, she wasn't diagnoses with Mac till 1/2022 they said she's probably had this for years " miss diagnosed for many years.
I’m on imipenum, Amikacin and Linezolid
My ID Dr says pain isn’t a symptom of MAC . I m in a lot of pain
What happens if I get PICC line and can’t tolerate the antibiotics?
They would have it removed
You can have it taken out and not take the drug. No one can force you to do anything.
My wife has been diagnosed with MAC, she’s been taking the 3 antibiotics now for about two years, Mac has not gotten worse or better, the doctor had her have a Bronchoscopy, after having another chest X-ray he put her on Amikacin, it’s been 3 months!
That is quite sad.
thanks@@11buleria