Non-Tuberculous Mycobacteria

[mamerth]

I just got diagnosed with Non-tuberculous mycobacteria. I am clueless. Can you guide me to helpful information so I know what I am dealing with?? Dr. didn't seem concerned. They took me off Zithro and didn't put me on anything new.

How and where did I get this?? I guess my pseudomonas is gone but now I am dealing with this.

 

[mamerth]

I just got diagnosed with Non-tuberculous mycobacteria. I am clueless. Can you guide me to helpful information so I know what I am dealing with?? Dr. didn't seem concerned. They took me off Zithro and didn't put me on anything new.

How and where did I get this?? I guess my pseudomonas is gone but now I am dealing with this.

 

[mamerth]

I just got diagnosed with Non-tuberculous mycobacteria. I am clueless. Can you guide me to helpful information so I know what I am dealing with?? Dr. didn't seem concerned. They took me off Zithro and didn't put me on anything new.
<br />
<br />How and where did I get this?? I guess my pseudomonas is gone but now I am dealing with this.

 

[tleigh]

Well crud! I am so sorry that you have to fight this! Were they able to identify which strain? There are several kinds of myco. I have m.cheloni and sometimes cultured another (sorry, can't remember that one right now). The tough part about a myco bacteria is it is really hard to identify when it is active and actually causing problems-often myco sick can look like cf sick. The docs treated mine when I had a higher number of exacerbations which just weren't going away as well as a drop in pft's. At that time the doc decided to treat with a cocktail of IV antibiotics. Another tough part of myco is that there is not really a standard treatment-more of a mix and match, often for several months.

But don't give up hope-there are treatments that help and I haven't had to do another intense round yet (praise the Lord).

 

[tleigh]

Well crud! I am so sorry that you have to fight this! Were they able to identify which strain? There are several kinds of myco. I have m.cheloni and sometimes cultured another (sorry, can't remember that one right now). The tough part about a myco bacteria is it is really hard to identify when it is active and actually causing problems-often myco sick can look like cf sick. The docs treated mine when I had a higher number of exacerbations which just weren't going away as well as a drop in pft's. At that time the doc decided to treat with a cocktail of IV antibiotics. Another tough part of myco is that there is not really a standard treatment-more of a mix and match, often for several months.

But don't give up hope-there are treatments that help and I haven't had to do another intense round yet (praise the Lord).

 

[tleigh]

Well crud! I am so sorry that you have to fight this! Were they able to identify which strain? There are several kinds of myco. I have m.cheloni and sometimes cultured another (sorry, can't remember that one right now). The tough part about a myco bacteria is it is really hard to identify when it is active and actually causing problems-often myco sick can look like cf sick. The docs treated mine when I had a higher number of exacerbations which just weren't going away as well as a drop in pft's. At that time the doc decided to treat with a cocktail of IV antibiotics. Another tough part of myco is that there is not really a standard treatment-more of a mix and match, often for several months.
<br />
<br />But don't give up hope-there are treatments that help and I haven't had to do another intense round yet (praise the Lord).

 

[Ratatosk]

Ugh, at least location-wise you're probably at one of the best clinics -- Jewish -- in terms of treatment. So sorry to hear that this has also been added to "your plate". As if you don't have enough to deal with.

 

[Ratatosk]

Ugh, at least location-wise you're probably at one of the best clinics -- Jewish -- in terms of treatment. So sorry to hear that this has also been added to "your plate". As if you don't have enough to deal with.

 

[Ratatosk]

Ugh, at least location-wise you're probably at one of the best clinics -- Jewish -- in terms of treatment. So sorry to hear that this has also been added to "your plate". As if you don't have enough to deal with.

 

[Liza]

Yes, I think it depends on what strain. Anna had Myco Bacterium Avium (SP?), aka-MAC. From what I understood with that is, usually it is only found in patients with compromised immune systems, such as Anna's. They found it two months after a bought of A4 rejection, 18 months post transplant. It did not prevent her from traveling, in fact they called her as she was boarding a plane back to NE from a tx clinic appt. in CA. For her, and I guess this particular strain, they put her on 1000mg of Ethambutol and 300mg of Mycobutin three times a week. Apparently these are two very old drugs that have been in successful use for many many years. She was told when she cultured three consecutive negatives, she would then be on these two meds. for one year from the third cultured negative.

So has been our experience with MAC and how the transplant doctors at Stanford treated it. Anna is currently listed for a second tx at Cleveland Clinic and they agreed with the treatment that she went through. We were pleased to have two great hospitals agree on a treatment process.

From what I have read up on how the heck she even caught MAC and from what the doctors told us. Being exposed is almost unavoidable. The concern comes when you have a compromised immune system. Not to scare you away from taking nice hot showers, but hot water heaters are a culpret. Really its the age of the hot water heaters, sedement, rust, how the water sits there waiting to be used. The docs said there was nothing you can really do to prevent it and they wouldn't suggest avoiding taking a nice hot shower or washing your face. Life must go on. They were not too concerned and they were dealing with a transplant patient. They certainly put our minds at ease. I think if the possibility of contracting MAC was of great concern then it would have been a subject on one of the many pages of instructions post transplant, like wearing at least a P95 mask in the hospital and around areas where they were doing construction and if you like to garden, but it wasn't.

I tend to ramble sometimes, sorry. When you find out what strain of Mycobacteri you have I hope this helps.

 

[Liza]

Yes, I think it depends on what strain. Anna had Myco Bacterium Avium (SP?), aka-MAC. From what I understood with that is, usually it is only found in patients with compromised immune systems, such as Anna's. They found it two months after a bought of A4 rejection, 18 months post transplant. It did not prevent her from traveling, in fact they called her as she was boarding a plane back to NE from a tx clinic appt. in CA. For her, and I guess this particular strain, they put her on 1000mg of Ethambutol and 300mg of Mycobutin three times a week. Apparently these are two very old drugs that have been in successful use for many many years. She was told when she cultured three consecutive negatives, she would then be on these two meds. for one year from the third cultured negative.

So has been our experience with MAC and how the transplant doctors at Stanford treated it. Anna is currently listed for a second tx at Cleveland Clinic and they agreed with the treatment that she went through. We were pleased to have two great hospitals agree on a treatment process.

From what I have read up on how the heck she even caught MAC and from what the doctors told us. Being exposed is almost unavoidable. The concern comes when you have a compromised immune system. Not to scare you away from taking nice hot showers, but hot water heaters are a culpret. Really its the age of the hot water heaters, sedement, rust, how the water sits there waiting to be used. The docs said there was nothing you can really do to prevent it and they wouldn't suggest avoiding taking a nice hot shower or washing your face. Life must go on. They were not too concerned and they were dealing with a transplant patient. They certainly put our minds at ease. I think if the possibility of contracting MAC was of great concern then it would have been a subject on one of the many pages of instructions post transplant, like wearing at least a P95 mask in the hospital and around areas where they were doing construction and if you like to garden, but it wasn't.

I tend to ramble sometimes, sorry. When you find out what strain of Mycobacteri you have I hope this helps.

 

[Liza]

Yes, I think it depends on what strain. Anna had Myco Bacterium Avium (SP?), aka-MAC. From what I understood with that is, usually it is only found in patients with compromised immune systems, such as Anna's. They found it two months after a bought of A4 rejection, 18 months post transplant. It did not prevent her from traveling, in fact they called her as she was boarding a plane back to NE from a tx clinic appt. in CA. For her, and I guess this particular strain, they put her on 1000mg of Ethambutol and 300mg of Mycobutin three times a week. Apparently these are two very old drugs that have been in successful use for many many years. She was told when she cultured three consecutive negatives, she would then be on these two meds. for one year from the third cultured negative.
<br />
<br />So has been our experience with MAC and how the transplant doctors at Stanford treated it. Anna is currently listed for a second tx at Cleveland Clinic and they agreed with the treatment that she went through. We were pleased to have two great hospitals agree on a treatment process.
<br />
<br />From what I have read up on how the heck she even caught MAC and from what the doctors told us. Being exposed is almost unavoidable. The concern comes when you have a compromised immune system. Not to scare you away from taking nice hot showers, but hot water heaters are a culpret. Really its the age of the hot water heaters, sedement, rust, how the water sits there waiting to be used. The docs said there was nothing you can really do to prevent it and they wouldn't suggest avoiding taking a nice hot shower or washing your face. Life must go on. They were not too concerned and they were dealing with a transplant patient. They certainly put our minds at ease. I think if the possibility of contracting MAC was of great concern then it would have been a subject on one of the many pages of instructions post transplant, like wearing at least a P95 mask in the hospital and around areas where they were doing construction and if you like to garden, but it wasn't.
<br />
<br />I tend to ramble sometimes, sorry. When you find out what strain of Mycobacteri you have I hope this helps.

 

[NYCLawGirl]

Carrie,

Dr. Nick and his crew are renowned for dealing with mycobacterium, so resta assured you are in the best possible place to receive your care.

They most likely took you off the zithro b/c treatment for myco often involves zithro, and you can't be taking it 3x a week (per usual in CF care) in order for it to be effective. So taking you off that drug now reserves it as an option for the future if you need it to treat your myco. The treatment for this varies depending on the strain and the symptoms -- sometimes it is left alone unless it is bothering you/causing problems and other times the treatment is intense, as in up to a year or even a little longer of some combo IV and oral abx. For now, if Dr. Nick doesn't seem worried, it probably means he is going to wait and see before he tries any sort of treatment. It's an aggressive center though, so he'll definitely treat you when you need it!

Hope you don't have many problems with this. Sorry you have to deal with it at all!

 

[NYCLawGirl]

Carrie,

Dr. Nick and his crew are renowned for dealing with mycobacterium, so resta assured you are in the best possible place to receive your care.

They most likely took you off the zithro b/c treatment for myco often involves zithro, and you can't be taking it 3x a week (per usual in CF care) in order for it to be effective. So taking you off that drug now reserves it as an option for the future if you need it to treat your myco. The treatment for this varies depending on the strain and the symptoms -- sometimes it is left alone unless it is bothering you/causing problems and other times the treatment is intense, as in up to a year or even a little longer of some combo IV and oral abx. For now, if Dr. Nick doesn't seem worried, it probably means he is going to wait and see before he tries any sort of treatment. It's an aggressive center though, so he'll definitely treat you when you need it!

Hope you don't have many problems with this. Sorry you have to deal with it at all!

 

[NYCLawGirl]

Carrie,
<br />
<br />Dr. Nick and his crew are renowned for dealing with mycobacterium, so resta assured you are in the best possible place to receive your care.
<br />
<br />They most likely took you off the zithro b/c treatment for myco often involves zithro, and you can't be taking it 3x a week (per usual in CF care) in order for it to be effective. So taking you off that drug now reserves it as an option for the future if you need it to treat your myco. The treatment for this varies depending on the strain and the symptoms -- sometimes it is left alone unless it is bothering you/causing problems and other times the treatment is intense, as in up to a year or even a little longer of some combo IV and oral abx. For now, if Dr. Nick doesn't seem worried, it probably means he is going to wait and see before he tries any sort of treatment. It's an aggressive center though, so he'll definitely treat you when you need it!
<br />
<br />Hope you don't have many problems with this. Sorry you have to deal with it at all!

 

[Keepercjr]

About 10+ years ago I cultured mycobacterium Abscessus. We treated it with Biaxin and inhaled Amikacin for a few months. That was with my peds clinic. It went away for a little while and then I started culturing it again. I don't think it was getting me sick though. With my adult clinic, the choice to treat it was mine to make or not and I chose not to. I haven't cultured it in several years now. But like Piper said, if you do treat it, it is at least 6 months to a year or longer of treatment, usually IVs but sometimes inhaled (like the Amikacin I did).

It also takes a while to ID the strain - it has to be sent off to a specific lab and it is slow growing so you may not hear back for a few weeks. And taking you off the zithro is because they don't want the NTB to become resistant.

 

[Keepercjr]

About 10+ years ago I cultured mycobacterium Abscessus. We treated it with Biaxin and inhaled Amikacin for a few months. That was with my peds clinic. It went away for a little while and then I started culturing it again. I don't think it was getting me sick though. With my adult clinic, the choice to treat it was mine to make or not and I chose not to. I haven't cultured it in several years now. But like Piper said, if you do treat it, it is at least 6 months to a year or longer of treatment, usually IVs but sometimes inhaled (like the Amikacin I did).

It also takes a while to ID the strain - it has to be sent off to a specific lab and it is slow growing so you may not hear back for a few weeks. And taking you off the zithro is because they don't want the NTB to become resistant.

 

[Keepercjr]

About 10+ years ago I cultured mycobacterium Abscessus. We treated it with Biaxin and inhaled Amikacin for a few months. That was with my peds clinic. It went away for a little while and then I started culturing it again. I don't think it was getting me sick though. With my adult clinic, the choice to treat it was mine to make or not and I chose not to. I haven't cultured it in several years now. But like Piper said, if you do treat it, it is at least 6 months to a year or longer of treatment, usually IVs but sometimes inhaled (like the Amikacin I did).
<br />
<br />It also takes a while to ID the strain - it has to be sent off to a specific lab and it is slow growing so you may not hear back for a few weeks. And taking you off the zithro is because they don't want the NTB to become resistant.

 

[mamerth]

Yes, I feel like I am in good hands. I was a bit shocked to hear my my diagnosis. Thank you for the words of encouragement. Yes, Dr. Nick and his crew are the best!! I guess this kinda explains why I was so sick a few weeks ago. It is taken we weeks and weeks to get back to normal. Thankfully my lung function number yesterday was 74%. My lung function numbers are going up--- finally!!!

I am feeling optimistic but at the same time vulnerable.

 

[mamerth]

Yes, I feel like I am in good hands. I was a bit shocked to hear my my diagnosis. Thank you for the words of encouragement. Yes, Dr. Nick and his crew are the best!! I guess this kinda explains why I was so sick a few weeks ago. It is taken we weeks and weeks to get back to normal. Thankfully my lung function number yesterday was 74%. My lung function numbers are going up--- finally!!!

I am feeling optimistic but at the same time vulnerable.