Ethambutol and Rifampin both had major effects on my sense of taste. Spaghetti and pizza sauce tasted metallic, I couldn't drink my V8 juice for 2 years, and everything citrus tasted like I was chewing on the bitter pith. I could barely stand any meat and coke tasted awful (no wonder I lost 20% of my body weight!) I live on protein smoothies, cheese, a little fruit and cashews for 2 years.
Ethambutol and Rifampin both had major effects on my sense of taste. Spaghetti and pizza sauce tasted metallic, I couldn't drink my V8 juice for 2 years, and everything citrus tasted like I was chewing on the bitter pith. I could barely stand any meat and coke tasted awful (no wonder I lost 20% of my body weight!) I live on protein smoothies, cheese, a little fruit and cashews for 2 years.
My ID doctor prescribed the "Big 2" this past March (had been on the "3" the previous year and had side effects and was taken off of them). So, in March of this year, my doctor advised taking Azrithro and Ethambutol. I was to take the Azithro the first week and add the Etham the 2nd week. Three days into the Azith, I began smelling sewage and tasting metal.
Thinking my 11 year old home had a sewage problem and finding it hard to live in it, I called a major plumbing company and had everything that might cause this awful odor replaced, including the ejection pump, disposal, etc. Thousands of dollars and I had no clue a drug could cause such symptoms. Also, I began to lose weight due to the metallic taste of food and lack of appetite.
I took the Azrithro and the Ethambutol as prescribed for one month because I had a follow up appointment with my ID doctor and wanted to discuss this with him. He agreed the Azithro may have caused the "phantasmia" and "dysgeusia" symptoms and took me off the drugs. Within 3 days, the symptoms lessened and after about 6 weeks, they were gone.
Now I have the problem of not being able to take the major macrolide for our diseases (BE and MAC). I have been using the Aerobika only as my airway clearance, eating a mostly plant-based diet (for 20+ years), and I exercise daily. (I have major hemoptysis episodes so am unable to use saline/albuterol because they cause the episodes).
But, in spite of the barriers, I haven't felt this well in over a year and have no clue what the future holds for me but it won't be the antibiotics.
Please keep in mind, every individual is different and what works for one may not work for another, but I'm "good" for now anyway and know I may not always feel this well in the future. I am not as interested in "saving" my life at this point as I am "living" my life, especially at the age of almost 80.
My ID doctor prescribed the "Big 2" this past March (had been on the "3" the previous year and had side effects and was taken off of them). So, in March of this year, my doctor advised taking Azrithro and Ethambutol. I was to take the Azithro the first week and add the Etham the 2nd week. Three days into the Azith, I began smelling sewage and tasting metal.
Thinking my 11 year old home had a sewage problem and finding it hard to live in it, I called a major plumbing company and had everything that might cause this awful odor replaced, including the ejection pump, disposal, etc. Thousands of dollars and I had no clue a drug could cause such symptoms. Also, I began to lose weight due to the metallic taste of food and lack of appetite.
I took the Azrithro and the Ethambutol as prescribed for one month because I had a follow up appointment with my ID doctor and wanted to discuss this with him. He agreed the Azithro may have caused the "phantasmia" and "dysgeusia" symptoms and took me off the drugs. Within 3 days, the symptoms lessened and after about 6 weeks, they were gone.
Now I have the problem of not being able to take the major macrolide for our diseases (BE and MAC). I have been using the Aerobika only as my airway clearance, eating a mostly plant-based diet (for 20+ years), and I exercise daily. (I have major hemoptysis episodes so am unable to use saline/albuterol because they cause the episodes).
But, in spite of the barriers, I haven't felt this well in over a year and have no clue what the future holds for me but it won't be the antibiotics.
Please keep in mind, every individual is different and what works for one may not work for another, but I'm "good" for now anyway and know I may not always feel this well in the future. I am not as interested in "saving" my life at this point as I am "living" my life, especially at the age of almost 80.
Yes, I am going to be 82 in October so I understand what your thoughts are. It has not been suggested for me to start med's for MAI/MAC. If ever it is, I will think long and hard about it. Lucky are the few that reach their 90's and don't have thoughts of "why am I still here' due to serious health problems. So glad I found the book "I'll Have It My Way." Written by the daughter ( Hattie Bryant) of the Mother that inspired her to write the book after her Mother's passing. I am fortunate, as yet, that I feel well and no breathing problems. Just a frustrating continuous need to clear my throat of mucus that I believe is caused by hiatal hernia and silent reflux (LPR).
P.S. No fun having spent hard earned money only to find out it wasn't the house attachments it was the med's. However, question answered and that one problem "solved."
Barbara
My ID doctor prescribed the "Big 2" this past March (had been on the "3" the previous year and had side effects and was taken off of them). So, in March of this year, my doctor advised taking Azrithro and Ethambutol. I was to take the Azithro the first week and add the Etham the 2nd week. Three days into the Azith, I began smelling sewage and tasting metal.
Thinking my 11 year old home had a sewage problem and finding it hard to live in it, I called a major plumbing company and had everything that might cause this awful odor replaced, including the ejection pump, disposal, etc. Thousands of dollars and I had no clue a drug could cause such symptoms. Also, I began to lose weight due to the metallic taste of food and lack of appetite.
I took the Azrithro and the Ethambutol as prescribed for one month because I had a follow up appointment with my ID doctor and wanted to discuss this with him. He agreed the Azithro may have caused the "phantasmia" and "dysgeusia" symptoms and took me off the drugs. Within 3 days, the symptoms lessened and after about 6 weeks, they were gone.
Now I have the problem of not being able to take the major macrolide for our diseases (BE and MAC). I have been using the Aerobika only as my airway clearance, eating a mostly plant-based diet (for 20+ years), and I exercise daily. (I have major hemoptysis episodes so am unable to use saline/albuterol because they cause the episodes).
But, in spite of the barriers, I haven't felt this well in over a year and have no clue what the future holds for me but it won't be the antibiotics.
Please keep in mind, every individual is different and what works for one may not work for another, but I'm "good" for now anyway and know I may not always feel this well in the future. I am not as interested in "saving" my life at this point as I am "living" my life, especially at the age of almost 80.
Thank you for your info. I think my side effects are not as bad as yours. I am on antibiotics to prevent getting the lung symptoms. So hoping that works.
Connect
Connect
Like
Helpful
Hug
No nothing like that. I just have a terrible cough.
Ethambutol and Rifampin both had major effects on my sense of taste. Spaghetti and pizza sauce tasted metallic, I couldn't drink my V8 juice for 2 years, and everything citrus tasted like I was chewing on the bitter pith. I could barely stand any meat and coke tasted awful (no wonder I lost 20% of my body weight!) I live on protein smoothies, cheese, a little fruit and cashews for 2 years.
Yes exactly. Ugh
bitter taste may also come from bile via
duodeno-gastric reflux
gastro-esophageal reflux
laryngo-pharyngeal reflux
or just belching
Could be lung bacteria too
I was shocked that I had no issues with taking the drugs. My daughter got me very good probiotics. My Mac is drug resistant to azthromycin
I think it is just the pills since I don’t have these issues.
My ID doctor prescribed the "Big 2" this past March (had been on the "3" the previous year and had side effects and was taken off of them). So, in March of this year, my doctor advised taking Azrithro and Ethambutol. I was to take the Azithro the first week and add the Etham the 2nd week. Three days into the Azith, I began smelling sewage and tasting metal.
Thinking my 11 year old home had a sewage problem and finding it hard to live in it, I called a major plumbing company and had everything that might cause this awful odor replaced, including the ejection pump, disposal, etc. Thousands of dollars and I had no clue a drug could cause such symptoms. Also, I began to lose weight due to the metallic taste of food and lack of appetite.
I took the Azrithro and the Ethambutol as prescribed for one month because I had a follow up appointment with my ID doctor and wanted to discuss this with him. He agreed the Azithro may have caused the "phantasmia" and "dysgeusia" symptoms and took me off the drugs. Within 3 days, the symptoms lessened and after about 6 weeks, they were gone.
Now I have the problem of not being able to take the major macrolide for our diseases (BE and MAC). I have been using the Aerobika only as my airway clearance, eating a mostly plant-based diet (for 20+ years), and I exercise daily. (I have major hemoptysis episodes so am unable to use saline/albuterol because they cause the episodes).
But, in spite of the barriers, I haven't felt this well in over a year and have no clue what the future holds for me but it won't be the antibiotics.
Please keep in mind, every individual is different and what works for one may not work for another, but I'm "good" for now anyway and know I may not always feel this well in the future. I am not as interested in "saving" my life at this point as I am "living" my life, especially at the age of almost 80.
Wishing you the best as we move forward.
-
Like -
Helpful -
Hug
2 ReactionsYes, I am going to be 82 in October so I understand what your thoughts are. It has not been suggested for me to start med's for MAI/MAC. If ever it is, I will think long and hard about it. Lucky are the few that reach their 90's and don't have thoughts of "why am I still here' due to serious health problems. So glad I found the book "I'll Have It My Way." Written by the daughter ( Hattie Bryant) of the Mother that inspired her to write the book after her Mother's passing. I am fortunate, as yet, that I feel well and no breathing problems. Just a frustrating continuous need to clear my throat of mucus that I believe is caused by hiatal hernia and silent reflux (LPR).
P.S. No fun having spent hard earned money only to find out it wasn't the house attachments it was the med's. However, question answered and that one problem "solved."
Barbara
Thank you for your info. I think my side effects are not as bad as yours. I am on antibiotics to prevent getting the lung symptoms. So hoping that works.