Read this! Aggressive antibiotic treatments may not always be the best answer

CyrilCrodius

New member
First, my own testimony.In the last 4 years, I had something like 6 courses of IV antibiotics. It is my opinion that I did not need most of them. I was pretty much stable. Not a high stable, but stable nonetheless. I had been around 40%-37% FEV1 for at least 2 years.What was happening is that sometimes I was having relatively frequent episodes of hemoptysis (2-monthly/monthly/weekly, it was very variable) but otherwise I was feeling normal. That wasn't new, I had already been coughing up blood more or less regularly since I was 14. One time it even happened on the very day I was being discharged from hospital after 14 days of IV. Plus, when I started having these episodes of hemoptysis at 14, I noticed that they happened every time I used a turbohaler. That is to say, the episodes of hemoptysis weren't expressedly related to exacerbations. They were caused by fragile lungs, inflammation and abnormally enlarged lung arteries and increased blood flow to the lungs due to chronic infection, as we found out 2 years ago. So when I was going to my CF checkups, when my doc was asking whether I was coughing up blood, I was answering that yes I did. Automatically he assumed I was having an exacerbation and put me on IV antibiotics to treat it.I knew that I did not need them. I was feeling very alright. Even when I wasn't feeling too alright, it was always something my body could get over by itself and my doc was never hearing anything about it. But then I thought the IV couldn't hurt, so I took them anyway.
Every time I came out of it worse than I was before. If the worse was not immediately after, it would be about 1 to 2 weeks after. It was as though the courses of antibiotics had broken a kind of statu quo, a kind of balance that my body had established with my communities of bacterias. My health would become kind of unstable in a way that is difficult to describe. It would get chaotically worse then get better as my body would regain balance/the control of things. I knew that I had a strain of PA that was more resistant than the other to antibiotics, plus one is mucous while the other is not. I think I asked my pneumologist whether it could be possible that antibiotics were breaking a kind of balance that was established between my two communities of bacterias and that it was making things worse rather than better and he said no.
Turns out I might have been right. Read the following.

<a href="http://www.mdnews.com/news/2012_03/decade-long-study-raises-new">http://www.mdnews.com/news/2012_03/decade-long-study-raises-new</a>
<h3>When it comes to treating cystic fibrosis, the current standard of aggressive antibiotic treatments may not always be the best answer, a decade-long study led by researchers at the University of Michigan has found.</h3>
<strong>ANN ARBOR, MI</strong> — Traditionally, bacteria-blasting antibiotics are used to suppress infection in CF patients’ lungs to the lowest level possible, but maintaining a diversity of bacterial communities may help some patients stay healthy longer, says the study’s senior author, John J. LiPuma, M.D.
The findings appear in the <em>Proceedings of the National Academy of Sciences</em>.
“The conventional wisdom has been that as patients with CF age and become sicker, as their lung disease progresses, more and more bacteria move in,” says LiPuma, the James L. Wilson, M.D., Research Professor of Pediatrics and Communicable Diseases at the U-M Medical School. “But our study – which was the first to examine the bacterial communities in CF patients’ lungs over a long period of time – indicates that’s not what happens.”
Instead, aggressive use of antibiotics – rather than a patient’s age or disease progression – is responsible for lowering the diversity of lung bacteria, leading to infections that become increasingly hard to treat. A diverse community of bacteria may encourage competition that keeps the most virulent strains in check, the researchers found.More at link.
 

CyrilCrodius

New member
First, my own testimony.In the last 4 years, I had something like 6 courses of IV antibiotics. It is my opinion that I did not need most of them. I was pretty much stable. Not a high stable, but stable nonetheless. I had been around 40%-37% FEV1 for at least 2 years.What was happening is that sometimes I was having relatively frequent episodes of hemoptysis (2-monthly/monthly/weekly, it was very variable) but otherwise I was feeling normal. That wasn't new, I had already been coughing up blood more or less regularly since I was 14. One time it even happened on the very day I was being discharged from hospital after 14 days of IV. Plus, when I started having these episodes of hemoptysis at 14, I noticed that they happened every time I used a turbohaler. That is to say, the episodes of hemoptysis weren't expressedly related to exacerbations. They were caused by fragile lungs, inflammation and abnormally enlarged lung arteries and increased blood flow to the lungs due to chronic infection, as we found out 2 years ago. So when I was going to my CF checkups, when my doc was asking whether I was coughing up blood, I was answering that yes I did. Automatically he assumed I was having an exacerbation and put me on IV antibiotics to treat it.I knew that I did not need them. I was feeling very alright. Even when I wasn't feeling too alright, it was always something my body could get over by itself and my doc was never hearing anything about it. But then I thought the IV couldn't hurt, so I took them anyway.
Every time I came out of it worse than I was before. If the worse was not immediately after, it would be about 1 to 2 weeks after. It was as though the courses of antibiotics had broken a kind of statu quo, a kind of balance that my body had established with my communities of bacterias. My health would become kind of unstable in a way that is difficult to describe. It would get chaotically worse then get better as my body would regain balance/the control of things. I knew that I had a strain of PA that was more resistant than the other to antibiotics, plus one is mucous while the other is not. I think I asked my pneumologist whether it could be possible that antibiotics were breaking a kind of balance that was established between my two communities of bacterias and that it was making things worse rather than better and he said no.
Turns out I might have been right. Read the following.

<a href="http://www.mdnews.com/news/2012_03/decade-long-study-raises-new">http://www.mdnews.com/news/2012_03/decade-long-study-raises-new</a>
<h3>When it comes to treating cystic fibrosis, the current standard of aggressive antibiotic treatments may not always be the best answer, a decade-long study led by researchers at the University of Michigan has found.</h3>
<strong>ANN ARBOR, MI</strong> — Traditionally, bacteria-blasting antibiotics are used to suppress infection in CF patients’ lungs to the lowest level possible, but maintaining a diversity of bacterial communities may help some patients stay healthy longer, says the study’s senior author, John J. LiPuma, M.D.
The findings appear in the <em>Proceedings of the National Academy of Sciences</em>.
“The conventional wisdom has been that as patients with CF age and become sicker, as their lung disease progresses, more and more bacteria move in,” says LiPuma, the James L. Wilson, M.D., Research Professor of Pediatrics and Communicable Diseases at the U-M Medical School. “But our study – which was the first to examine the bacterial communities in CF patients’ lungs over a long period of time – indicates that’s not what happens.”
Instead, aggressive use of antibiotics – rather than a patient’s age or disease progression – is responsible for lowering the diversity of lung bacteria, leading to infections that become increasingly hard to treat. A diverse community of bacteria may encourage competition that keeps the most virulent strains in check, the researchers found.More at link.
 

Havoc

New member
I read this a few weeks ago. It is interesting, but it's important to remember that this study has raised a lot of questions and not offered any answers.

It makes sense with regard to very resistant strains of bacteria. You kill off the competition and give it more real estate. The problem is chronic infection and lung damage is what kills CF patients, so I don't think we will see treatment protocols radically shift until we know more.

The questions I have after reading this are: What are the implications of seeding the lungs with normal flora (kind of like we do with the gut after a round of antibiotics)? Will those normal flora mutate into nastier strains? Should we be genetically sequencing every culture to determine which ones to target?

It will be very interesting to see where this research leads.
 

Havoc

New member
I read this a few weeks ago. It is interesting, but it's important to remember that this study has raised a lot of questions and not offered any answers.

It makes sense with regard to very resistant strains of bacteria. You kill off the competition and give it more real estate. The problem is chronic infection and lung damage is what kills CF patients, so I don't think we will see treatment protocols radically shift until we know more.

The questions I have after reading this are: What are the implications of seeding the lungs with normal flora (kind of like we do with the gut after a round of antibiotics)? Will those normal flora mutate into nastier strains? Should we be genetically sequencing every culture to determine which ones to target?

It will be very interesting to see where this research leads.
 

nocode

New member
Thanks for this post, very informative. I can add my own experience - I have had FEV1 of around 35% for 10 years, it doesn't really fluctuate, for better or worse. I am 28 and have only been on IVs twice. Every time I get an infection, I am treated with a 2 week round of oral antibiotics and I always get back to my normal, without needing IVs. This is not to say that I don't believe IV treatments have a positive effect; I know they can really improve our health especially when fighting nasty infections, but I believe they should be plan B when oral meds don't work, and not plan A.
 

nocode

New member
Thanks for this post, very informative. I can add my own experience - I have had FEV1 of around 35% for 10 years, it doesn't really fluctuate, for better or worse. I am 28 and have only been on IVs twice. Every time I get an infection, I am treated with a 2 week round of oral antibiotics and I always get back to my normal, without needing IVs. This is not to say that I don't believe IV treatments have a positive effect; I know they can really improve our health especially when fighting nasty infections, but I believe they should be plan B when oral meds don't work, and not plan A.
 

Tisha

New member
Extremely interesting, thanks for posting!
A recent discovery I've had (but that has been used in Germany since 15 years ago) is that breathing in lavender (3 drops of essential oil in 1 quart boiling water, for 5 minutes -- good unless you have astma I read) and breathing in your antibiotics 15 minutes later, somehow soothes the lungs and makes the treatment act better. And so I've found!
I've always believed in finding a balance between heavy antibiotics and milder, natural cures whenever possible.
 

Tisha

New member
Extremely interesting, thanks for posting!
A recent discovery I've had (but that has been used in Germany since 15 years ago) is that breathing in lavender (3 drops of essential oil in 1 quart boiling water, for 5 minutes -- good unless you have astma I read) and breathing in your antibiotics 15 minutes later, somehow soothes the lungs and makes the treatment act better. And so I've found!
I've always believed in finding a balance between heavy antibiotics and milder, natural cures whenever possible.
 

scanboyd

Member
I agree nocode, do oral first then hit with big gun if needed. Like nocode, low fev1, no IVs in yrs. only one maybe two in my adult life. Keep a bottle of 750 levaquin, rarely have to take maybe once a yr. if that, only if I get increased cough for more than a few days. Wash hands regularly and keep hands out of mouth. Very active for old guy.
Being well hydrated, neb rx and exercise, do not know which is the most important for me. These are my suggestions to all.
Good luck to my CFers<img src="i/expressions/face-icon-small-smile.gif" border="0">!!
 

scanboyd

Member
I agree nocode, do oral first then hit with big gun if needed. Like nocode, low fev1, no IVs in yrs. only one maybe two in my adult life. Keep a bottle of 750 levaquin, rarely have to take maybe once a yr. if that, only if I get increased cough for more than a few days. Wash hands regularly and keep hands out of mouth. Very active for old guy.
Being well hydrated, neb rx and exercise, do not know which is the most important for me. These are my suggestions to all.
Good luck to my CFers<img src="i/expressions/face-icon-small-smile.gif" border="0">!!
 

JoyousMom

New member
It's good to know that my daughter's CF doctor/team have been on the right track! For the past 4 years he has refused to put her in the hospital, tending, instead, toward oral antibiotics and home treatments. We are grateful. Recently we added something new to her routine--the Neil Med. sinus rinse thing, which she does twice daily. She is an extraordinary young singer (got a scholarship to local college music program while still in high school!). She had 5 months of chronic cough, sore throat, and a pediatrician putting her on prednisone/oral antibioltics 5x. Finally, saw CF doctor, who recommended twice daily using this (he calls it a "Nettie Pack"). Within 24 hours her cough had disappeared, and within two days her singing voice returned! Amen!
 

JoyousMom

New member
It's good to know that my daughter's CF doctor/team have been on the right track! For the past 4 years he has refused to put her in the hospital, tending, instead, toward oral antibiotics and home treatments. We are grateful. Recently we added something new to her routine--the Neil Med. sinus rinse thing, which she does twice daily. She is an extraordinary young singer (got a scholarship to local college music program while still in high school!). She had 5 months of chronic cough, sore throat, and a pediatrician putting her on prednisone/oral antibioltics 5x. Finally, saw CF doctor, who recommended twice daily using this (he calls it a "Nettie Pack"). Within 24 hours her cough had disappeared, and within two days her singing voice returned! Amen!
 

imported_Momto2

New member
Yep, I agree with that. Usually every winter I have to go on 1-2 courses or oral antibiotics. Havent been on IV stuff for 6 years, and before that, it was 3 years. I have always been insistent on only using IV treatments as a last resort, and NEVER as a long term or preventative solution. Its probably why I have almost no resistant bugs. And I certainly have noticed the competition in lung bugs. I always keep steroids, antibiotics, narcotic painkillers, various nebbie meds on hand when I need them. That way I have them the second I need it, not two days later when the window of "nipping it in the bud" has already passed.
 

imported_Momto2

New member
Yep, I agree with that. Usually every winter I have to go on 1-2 courses or oral antibiotics. Havent been on IV stuff for 6 years, and before that, it was 3 years. I have always been insistent on only using IV treatments as a last resort, and NEVER as a long term or preventative solution. Its probably why I have almost no resistant bugs. And I certainly have noticed the competition in lung bugs. I always keep steroids, antibiotics, narcotic painkillers, various nebbie meds on hand when I need them. That way I have them the second I need it, not two days later when the window of "nipping it in the bud" has already passed.
 

baseballfrank

New member
This is very interesting. I go on IV antibiotics about every 6 months. Every time I go on them I feel MISERABLE during the 2-3 week treatment and I don't see much improvement. When I come off, I actually start feeling better. Doctors tell me I am resistant to all oral antibiotics and most IV antibiotics so I am getting worried that nothing will work. Hearing this makes me think that IV's are hurting me more then helping me.
 

baseballfrank

New member
This is very interesting. I go on IV antibiotics about every 6 months. Every time I go on them I feel MISERABLE during the 2-3 week treatment and I don't see much improvement. When I come off, I actually start feeling better. Doctors tell me I am resistant to all oral antibiotics and most IV antibiotics so I am getting worried that nothing will work. Hearing this makes me think that IV's are hurting me more then helping me.
 
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