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Cerulean
10-21-2009, 12:26 AM
I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

Cerulean
10-21-2009, 12:26 AM
I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

Cerulean
10-21-2009, 12:26 AM
I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

Cerulean
10-21-2009, 12:26 AM
I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

Cerulean
10-21-2009, 12:26 AM
I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.
<br />
<br />The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.
<br />
<br />I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.
<br />
<br />If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.
<br />
<br />Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.
<br />
<br />I feel like a pariah.

JazzysMom
10-21-2009, 10:15 AM
We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

JazzysMom
10-21-2009, 10:15 AM
We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

JazzysMom
10-21-2009, 10:15 AM
We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

JazzysMom
10-21-2009, 10:15 AM
We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

JazzysMom
10-21-2009, 10:15 AM
We have a few patients that culture the same. Hopefully they will respond soon!
<br />
<br />Sorry to hear it all slamming you!

saveferris2009
10-21-2009, 11:52 AM
wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

saveferris2009
10-21-2009, 11:52 AM
wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

saveferris2009
10-21-2009, 11:52 AM
wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

saveferris2009
10-21-2009, 11:52 AM
wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

saveferris2009
10-21-2009, 11:52 AM
wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.
<br />
<br />99% of all CFer's would KILL for lung function like that.
<br />
<br />[edited because i made an incorrect statement here]
<br />
<br />I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

hmw
10-21-2009, 12:37 PM
Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

hmw
10-21-2009, 12:37 PM
Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

hmw
10-21-2009, 12:37 PM
Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

hmw
10-21-2009, 12:37 PM
Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

hmw
10-21-2009, 12:37 PM
Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...
<br />
<br />Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

Aspiemom
10-21-2009, 12:47 PM
I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

Aspiemom
10-21-2009, 12:47 PM
I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

Aspiemom
10-21-2009, 12:47 PM
I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

Aspiemom
10-21-2009, 12:47 PM
I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

Aspiemom
10-21-2009, 12:47 PM
I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.
<br />
<br />I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

Melissa75
10-21-2009, 04:12 PM
I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

Melissa75
10-21-2009, 04:12 PM
I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

Melissa75
10-21-2009, 04:12 PM
I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

Melissa75
10-21-2009, 04:12 PM
I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

Melissa75
10-21-2009, 04:12 PM
I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.
<br />
<br />Also, Univ. Texas at Tyler and NIH.
<br />
<br />There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

sweetpea21
10-21-2009, 04:17 PM
Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

sweetpea21
10-21-2009, 04:17 PM
Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

sweetpea21
10-21-2009, 04:17 PM
Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

sweetpea21
10-21-2009, 04:17 PM
Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

sweetpea21
10-21-2009, 04:17 PM
Cerulean,
<br />
<br />I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.
<br />
<br />I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.
<br />
<br />Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.
<br />
<br />I really hope you are able to get things figured out. Feel free to PM me about it.
<br />
<br />Good luck!

krisgabes
10-21-2009, 05:54 PM
Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

krisgabes
10-21-2009, 05:54 PM
Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

krisgabes
10-21-2009, 05:54 PM
Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

krisgabes
10-21-2009, 05:54 PM
Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

krisgabes
10-21-2009, 05:54 PM
Cerulean-
<br />
<br />I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.
<br />
<br />I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.
<br />
<br />I hope things work out for you and I hope you are able to work through this.

dramamama
10-21-2009, 06:47 PM
Just wanted to say I am sorry about such a devastating diagnosis. I had lung functions in the 80's and lost to 50% FEV1 bc of MAC and m. abscessus. They have never treated me because mine are very resistant and the doc at Denver and University at Texas in Tyler all agreed that it wasn't an option.

What I will say is that I have researched the LUNG Transplant thing extensively and it is still an option at certain centers. Do not give up hope! Ever! You always have options.

Get on Vitamin D3 immediately. Studies show that increased Vitamin D3 in the blood helps contain and fights the NTMs... This is something very easy to do and you should do it twice a day... at least 1000 units with a calcium/magnesium supplement.

Also, a friend in Netherlands and I both had very resistant NTMs and we both treated with colloidal silver and we both got much better. He was in the hospital for like 6 months and starting the silver and was able to be discharged.... email me and I will give you his email. I took it along with another "alternative" thing and quit culturing it altogether for more than 8 months. It is back but only sporadically and now is not as resistant...if you can believe that<img src="i/expressions/face-icon-small-smile.gif" border="0"> But, I gave up sugar, went on an anti-inflammatory diet, started magnesium, and started drinking green drinks (I blend vegetables in the blender to change my body and lung chemistry). Sounds like it is crazy, but I can send you my culture results to show the change it is making even now.

Also, NEVER EVER EVER let your doc put you on steroids now that you culture NTM. Our docs are a little behind in the research over here, but at The Hague the have done extensive research on this and find that steroids are a major cause in spreading of NTM. In fact, I had 8 months of clear cultures when my doc at National Jewish thought he would add a steroid burst because my white blood cell count was low.... indicating either a blood disorder or no infection.. In CF they tend to see high WBC count, so my number was strange... my dad also has low WBC and has run low all his life and I apparently just inherited that. The bottom line is the abscessus came back in the next culture two months later and it is the only thing that was changed in my treatment. My friend in the Netherlands also was told by his docs to never let a doc treat you with steroids once you culture NTM.

I wrote a paper to take to my doctor about NTMs and included research from an Israeli study that confirmed that long term ibuprofin and/or long term steroid usage preceded NTM culture in almost all cystic cases.... be very wary of how they treat you is the moral of this story.

contact if you want more info

dramamama
10-21-2009, 06:47 PM
Just wanted to say I am sorry about such a devastating diagnosis. I had lung functions in the 80's and lost to 50% FEV1 bc of MAC and m. abscessus. They have never treated me because mine are very resistant and the doc at Denver and University at Texas in Tyler all agreed that it wasn't an option.

What I will say is that I have researched the LUNG Transplant thing extensively and it is still an option at certain centers. Do not give up hope! Ever! You always have options.

Get on Vitamin D3 immediately. Studies show that increased Vitamin D3 in the blood helps contain and fights the NTMs... This is something very easy to do and you should do it twice a day... at least 1000 units with a calcium/magnesium supplement.

Also, a friend in Netherlands and I both had very resistant NTMs and we both treated with colloidal silver and we both got much better. He was in the hospital for like 6 months and starting the silver and was able to be discharged.... email me and I will give you his email. I took it along with another "alternative" thing and quit culturing it altogether for more than 8 months. It is back but only sporadically and now is not as resistant...if you can believe that<img src="i/expressions/face-icon-small-smile.gif" border="0"> But, I gave up sugar, went on an anti-inflammatory diet, started magnesium, and started drinking green drinks (I blend vegetables in the blender to change my body and lung chemistry). Sounds like it is crazy, but I can send you my culture results to show the change it is making even now.

Also, NEVER EVER EVER let your doc put you on steroids now that you culture NTM. Our docs are a little behind in the research over here, but at The Hague the have done extensive research on this and find that steroids are a major cause in spreading of NTM. In fact, I had 8 months of clear cultures when my doc at National Jewish thought he would add a steroid burst because my white blood cell count was low.... indicating either a blood disorder or no infection.. In CF they tend to see high WBC count, so my number was strange... my dad also has low WBC and has run low all his life and I apparently just inherited that. The bottom line is the abscessus came back in the next culture two months later and it is the only thing that was changed in my treatment. My friend in the Netherlands also was told by his docs to never let a doc treat you with steroids once you culture NTM.

I wrote a paper to take to my doctor about NTMs and included research from an Israeli study that confirmed that long term ibuprofin and/or long term steroid usage preceded NTM culture in almost all cystic cases.... be very wary of how they treat you is the moral of this story.

contact if you want more info

dramamama
10-21-2009, 06:47 PM
Just wanted to say I am sorry about such a devastating diagnosis. I had lung functions in the 80's and lost to 50% FEV1 bc of MAC and m. abscessus. They have never treated me because mine are very resistant and the doc at Denver and University at Texas in Tyler all agreed that it wasn't an option.

What I will say is that I have researched the LUNG Transplant thing extensively and it is still an option at certain centers. Do not give up hope! Ever! You always have options.

Get on Vitamin D3 immediately. Studies show that increased Vitamin D3 in the blood helps contain and fights the NTMs... This is something very easy to do and you should do it twice a day... at least 1000 units with a calcium/magnesium supplement.

Also, a friend in Netherlands and I both had very resistant NTMs and we both treated with colloidal silver and we both got much better. He was in the hospital for like 6 months and starting the silver and was able to be discharged.... email me and I will give you his email. I took it along with another "alternative" thing and quit culturing it altogether for more than 8 months. It is back but only sporadically and now is not as resistant...if you can believe that<img src="i/expressions/face-icon-small-smile.gif" border="0"> But, I gave up sugar, went on an anti-inflammatory diet, started magnesium, and started drinking green drinks (I blend vegetables in the blender to change my body and lung chemistry). Sounds like it is crazy, but I can send you my culture results to show the change it is making even now.

Also, NEVER EVER EVER let your doc put you on steroids now that you culture NTM. Our docs are a little behind in the research over here, but at The Hague the have done extensive research on this and find that steroids are a major cause in spreading of NTM. In fact, I had 8 months of clear cultures when my doc at National Jewish thought he would add a steroid burst because my white blood cell count was low.... indicating either a blood disorder or no infection.. In CF they tend to see high WBC count, so my number was strange... my dad also has low WBC and has run low all his life and I apparently just inherited that. The bottom line is the abscessus came back in the next culture two months later and it is the only thing that was changed in my treatment. My friend in the Netherlands also was told by his docs to never let a doc treat you with steroids once you culture NTM.

I wrote a paper to take to my doctor about NTMs and included research from an Israeli study that confirmed that long term ibuprofin and/or long term steroid usage preceded NTM culture in almost all cystic cases.... be very wary of how they treat you is the moral of this story.

contact if you want more info

dramamama
10-21-2009, 06:47 PM
Just wanted to say I am sorry about such a devastating diagnosis. I had lung functions in the 80's and lost to 50% FEV1 bc of MAC and m. abscessus. They have never treated me because mine are very resistant and the doc at Denver and University at Texas in Tyler all agreed that it wasn't an option.

What I will say is that I have researched the LUNG Transplant thing extensively and it is still an option at certain centers. Do not give up hope! Ever! You always have options.

Get on Vitamin D3 immediately. Studies show that increased Vitamin D3 in the blood helps contain and fights the NTMs... This is something very easy to do and you should do it twice a day... at least 1000 units with a calcium/magnesium supplement.

Also, a friend in Netherlands and I both had very resistant NTMs and we both treated with colloidal silver and we both got much better. He was in the hospital for like 6 months and starting the silver and was able to be discharged.... email me and I will give you his email. I took it along with another "alternative" thing and quit culturing it altogether for more than 8 months. It is back but only sporadically and now is not as resistant...if you can believe that<img src="i/expressions/face-icon-small-smile.gif" border="0"> But, I gave up sugar, went on an anti-inflammatory diet, started magnesium, and started drinking green drinks (I blend vegetables in the blender to change my body and lung chemistry). Sounds like it is crazy, but I can send you my culture results to show the change it is making even now.

Also, NEVER EVER EVER let your doc put you on steroids now that you culture NTM. Our docs are a little behind in the research over here, but at The Hague the have done extensive research on this and find that steroids are a major cause in spreading of NTM. In fact, I had 8 months of clear cultures when my doc at National Jewish thought he would add a steroid burst because my white blood cell count was low.... indicating either a blood disorder or no infection.. In CF they tend to see high WBC count, so my number was strange... my dad also has low WBC and has run low all his life and I apparently just inherited that. The bottom line is the abscessus came back in the next culture two months later and it is the only thing that was changed in my treatment. My friend in the Netherlands also was told by his docs to never let a doc treat you with steroids once you culture NTM.

I wrote a paper to take to my doctor about NTMs and included research from an Israeli study that confirmed that long term ibuprofin and/or long term steroid usage preceded NTM culture in almost all cystic cases.... be very wary of how they treat you is the moral of this story.

contact if you want more info

dramamama
10-21-2009, 06:47 PM
Just wanted to say I am sorry about such a devastating diagnosis. I had lung functions in the 80's and lost to 50% FEV1 bc of MAC and m. abscessus. They have never treated me because mine are very resistant and the doc at Denver and University at Texas in Tyler all agreed that it wasn't an option.
<br />
<br />What I will say is that I have researched the LUNG Transplant thing extensively and it is still an option at certain centers. Do not give up hope! Ever! You always have options.
<br />
<br />Get on Vitamin D3 immediately. Studies show that increased Vitamin D3 in the blood helps contain and fights the NTMs... This is something very easy to do and you should do it twice a day... at least 1000 units with a calcium/magnesium supplement.
<br />
<br />Also, a friend in Netherlands and I both had very resistant NTMs and we both treated with colloidal silver and we both got much better. He was in the hospital for like 6 months and starting the silver and was able to be discharged.... email me and I will give you his email. I took it along with another "alternative" thing and quit culturing it altogether for more than 8 months. It is back but only sporadically and now is not as resistant...if you can believe that<img src="i/expressions/face-icon-small-smile.gif" border="0"> But, I gave up sugar, went on an anti-inflammatory diet, started magnesium, and started drinking green drinks (I blend vegetables in the blender to change my body and lung chemistry). Sounds like it is crazy, but I can send you my culture results to show the change it is making even now.
<br />
<br />Also, NEVER EVER EVER let your doc put you on steroids now that you culture NTM. Our docs are a little behind in the research over here, but at The Hague the have done extensive research on this and find that steroids are a major cause in spreading of NTM. In fact, I had 8 months of clear cultures when my doc at National Jewish thought he would add a steroid burst because my white blood cell count was low.... indicating either a blood disorder or no infection.. In CF they tend to see high WBC count, so my number was strange... my dad also has low WBC and has run low all his life and I apparently just inherited that. The bottom line is the abscessus came back in the next culture two months later and it is the only thing that was changed in my treatment. My friend in the Netherlands also was told by his docs to never let a doc treat you with steroids once you culture NTM.
<br />
<br />I wrote a paper to take to my doctor about NTMs and included research from an Israeli study that confirmed that long term ibuprofin and/or long term steroid usage preceded NTM culture in almost all cystic cases.... be very wary of how they treat you is the moral of this story.
<br />
<br />contact if you want more info

jdubbs
10-21-2009, 08:26 PM
Hi Cerulean -
That sounds like tough news to take. I don't know much about MAC, but the good news is you feel well. Don't underestimate the significance of that. Often I get CF news and begin to extrapolate all sorts of scenarios. Try not to do what I do. It's not a problem until it actually manifests itself as a problem. Even then, the problem might not be as big as you might think. THis is all easy to say... Anyway, I sympathize. -James

jdubbs
10-21-2009, 08:26 PM
Hi Cerulean -
That sounds like tough news to take. I don't know much about MAC, but the good news is you feel well. Don't underestimate the significance of that. Often I get CF news and begin to extrapolate all sorts of scenarios. Try not to do what I do. It's not a problem until it actually manifests itself as a problem. Even then, the problem might not be as big as you might think. THis is all easy to say... Anyway, I sympathize. -James

jdubbs
10-21-2009, 08:26 PM
Hi Cerulean -
That sounds like tough news to take. I don't know much about MAC, but the good news is you feel well. Don't underestimate the significance of that. Often I get CF news and begin to extrapolate all sorts of scenarios. Try not to do what I do. It's not a problem until it actually manifests itself as a problem. Even then, the problem might not be as big as you might think. THis is all easy to say... Anyway, I sympathize. -James

jdubbs
10-21-2009, 08:26 PM
Hi Cerulean -
That sounds like tough news to take. I don't know much about MAC, but the good news is you feel well. Don't underestimate the significance of that. Often I get CF news and begin to extrapolate all sorts of scenarios. Try not to do what I do. It's not a problem until it actually manifests itself as a problem. Even then, the problem might not be as big as you might think. THis is all easy to say... Anyway, I sympathize. -James

jdubbs
10-21-2009, 08:26 PM
Hi Cerulean -
<br />That sounds like tough news to take. I don't know much about MAC, but the good news is you feel well. Don't underestimate the significance of that. Often I get CF news and begin to extrapolate all sorts of scenarios. Try not to do what I do. It's not a problem until it actually manifests itself as a problem. Even then, the problem might not be as big as you might think. THis is all easy to say... Anyway, I sympathize. -James

Cerulean
10-21-2009, 09:27 PM
I just wanted to take some time to thank everyone for their well wishes and the advice. There is a lot of information out there to go through, but I believe education is the key. I'm going to ask my doc more about it and why he is against treatment at this point. Perhaps he doesn't want me to culture resistant bacteria, or perhaps the regimine has a lot of side effects. I don't know at this point. I'm going to investigate further.

BTW I am like you James. I tend to blow things out of proportion, and dwell on the what ifs and the what could bes.
Thanks again all!

Cerulean
10-21-2009, 09:27 PM
I just wanted to take some time to thank everyone for their well wishes and the advice. There is a lot of information out there to go through, but I believe education is the key. I'm going to ask my doc more about it and why he is against treatment at this point. Perhaps he doesn't want me to culture resistant bacteria, or perhaps the regimine has a lot of side effects. I don't know at this point. I'm going to investigate further.

BTW I am like you James. I tend to blow things out of proportion, and dwell on the what ifs and the what could bes.
Thanks again all!

Cerulean
10-21-2009, 09:27 PM
I just wanted to take some time to thank everyone for their well wishes and the advice. There is a lot of information out there to go through, but I believe education is the key. I'm going to ask my doc more about it and why he is against treatment at this point. Perhaps he doesn't want me to culture resistant bacteria, or perhaps the regimine has a lot of side effects. I don't know at this point. I'm going to investigate further.

BTW I am like you James. I tend to blow things out of proportion, and dwell on the what ifs and the what could bes.
Thanks again all!

Cerulean
10-21-2009, 09:27 PM
I just wanted to take some time to thank everyone for their well wishes and the advice. There is a lot of information out there to go through, but I believe education is the key. I'm going to ask my doc more about it and why he is against treatment at this point. Perhaps he doesn't want me to culture resistant bacteria, or perhaps the regimine has a lot of side effects. I don't know at this point. I'm going to investigate further.

BTW I am like you James. I tend to blow things out of proportion, and dwell on the what ifs and the what could bes.
Thanks again all!

Cerulean
10-21-2009, 09:27 PM
I just wanted to take some time to thank everyone for their well wishes and the advice. There is a lot of information out there to go through, but I believe education is the key. I'm going to ask my doc more about it and why he is against treatment at this point. Perhaps he doesn't want me to culture resistant bacteria, or perhaps the regimine has a lot of side effects. I don't know at this point. I'm going to investigate further.
<br />
<br />BTW I am like you James. I tend to blow things out of proportion, and dwell on the what ifs and the what could bes.
<br />Thanks again all!

JennifersHope
10-22-2009, 12:05 AM
I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..

Good for you and your Fev1 being so high.. I don't have any experience with MAC but I wanted to encourage you to get a second OP.. from someone who specializes in it.. Joni is going to Dever and getting treatment.. SHe is there now,I am sure when she see's this she will respond.

Good luck to you

JennifersHope
10-22-2009, 12:05 AM
I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..

Good for you and your Fev1 being so high.. I don't have any experience with MAC but I wanted to encourage you to get a second OP.. from someone who specializes in it.. Joni is going to Dever and getting treatment.. SHe is there now,I am sure when she see's this she will respond.

Good luck to you

JennifersHope
10-22-2009, 12:05 AM
I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..

Good for you and your Fev1 being so high.. I don't have any experience with MAC but I wanted to encourage you to get a second OP.. from someone who specializes in it.. Joni is going to Dever and getting treatment.. SHe is there now,I am sure when she see's this she will respond.

Good luck to you

JennifersHope
10-22-2009, 12:05 AM
I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..

Good for you and your Fev1 being so high.. I don't have any experience with MAC but I wanted to encourage you to get a second OP.. from someone who specializes in it.. Joni is going to Dever and getting treatment.. SHe is there now,I am sure when she see's this she will respond.

Good luck to you

JennifersHope
10-22-2009, 12:05 AM
I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..
<br />
<br />Good for you and your Fev1 being so high.. I don't have any experience with MAC but I wanted to encourage you to get a second OP.. from someone who specializes in it.. Joni is going to Dever and getting treatment.. SHe is there now,I am sure when she see's this she will respond.
<br />
<br />Good luck to you

Melissa75
10-22-2009, 09:28 AM
Here is the treatment protocol of the woman with bronch, MAC and abcessus, who I mentioned:

Cefoxitin and Amikacin IV, Azithromicin every day, expecting to add a fourth antibiotic soon.
(IV's will continue for 3 months-1year depending on my progress.)

Melissa75
10-22-2009, 09:28 AM
Here is the treatment protocol of the woman with bronch, MAC and abcessus, who I mentioned:

Cefoxitin and Amikacin IV, Azithromicin every day, expecting to add a fourth antibiotic soon.
(IV's will continue for 3 months-1year depending on my progress.)

Melissa75
10-22-2009, 09:28 AM
Here is the treatment protocol of the woman with bronch, MAC and abcessus, who I mentioned:

Cefoxitin and Amikacin IV, Azithromicin every day, expecting to add a fourth antibiotic soon.
(IV's will continue for 3 months-1year depending on my progress.)

Melissa75
10-22-2009, 09:28 AM
Here is the treatment protocol of the woman with bronch, MAC and abcessus, who I mentioned:

Cefoxitin and Amikacin IV, Azithromicin every day, expecting to add a fourth antibiotic soon.
(IV's will continue for 3 months-1year depending on my progress.)

Melissa75
10-22-2009, 09:28 AM
Here is the treatment protocol of the woman with bronch, MAC and abcessus, who I mentioned:
<br />
<br />Cefoxitin and Amikacin IV, Azithromicin every day, expecting to add a fourth antibiotic soon.
<br />(IV's will continue for 3 months-1year depending on my progress.)

Wipeout
11-07-2009, 06:31 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>

I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..</end quote></div>

Wipeout
11-07-2009, 06:31 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>

I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..</end quote></div>

Wipeout
11-07-2009, 06:31 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>

I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..</end quote></div>

Wipeout
11-07-2009, 06:31 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>

I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..</end quote>

Wipeout
11-07-2009, 06:31 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>
<br />
<br />I am sorry that you got such a crude remark from Amy, I think she forgets her heart when she talks sometimes.. I know she is a lot older then Reece and Garren yet she came to the boards for understanding about her bleeds and other issues because they were upsetting to her..Victoria or Reece's mom didn't make her feel like crap..</end quote>