Question to others with Mycobacterias

[Jane]

When our docs first started treating the kids' bug, they didn't really know what it was so the sensitvies weren't available. Because of that, they were treated unsuccessfully for two years. As a result their health declined to the point where our doc wanted transplant evals.

When the info finally came through and meds were selected, things turned around rapidly. We have been good for a year. SO far so good.

We are rejoicing of course, but being realistic we know that this bug may not be completely gone. I wish you would get some good news too. You deserve a break!!!

 

[Jane]

When our docs first started treating the kids' bug, they didn't really know what it was so the sensitvies weren't available. Because of that, they were treated unsuccessfully for two years. As a result their health declined to the point where our doc wanted transplant evals.

When the info finally came through and meds were selected, things turned around rapidly. We have been good for a year. SO far so good.

We are rejoicing of course, but being realistic we know that this bug may not be completely gone. I wish you would get some good news too. You deserve a break!!!

 

[Jane]

When our docs first started treating the kids' bug, they didn't really know what it was so the sensitvies weren't available. Because of that, they were treated unsuccessfully for two years. As a result their health declined to the point where our doc wanted transplant evals.

When the info finally came through and meds were selected, things turned around rapidly. We have been good for a year. SO far so good.

We are rejoicing of course, but being realistic we know that this bug may not be completely gone. I wish you would get some good news too. You deserve a break!!!

 

[Jane]

When our docs first started treating the kids' bug, they didn't really know what it was so the sensitvies weren't available. Because of that, they were treated unsuccessfully for two years. As a result their health declined to the point where our doc wanted transplant evals.

When the info finally came through and meds were selected, things turned around rapidly. We have been good for a year. SO far so good.

We are rejoicing of course, but being realistic we know that this bug may not be completely gone. I wish you would get some good news too. You deserve a break!!!

 

[Jane]

When our docs first started treating the kids' bug, they didn't really know what it was so the sensitvies weren't available. Because of that, they were treated unsuccessfully for two years. As a result their health declined to the point where our doc wanted transplant evals.

When the info finally came through and meds were selected, things turned around rapidly. We have been good for a year. SO far so good.

We are rejoicing of course, but being realistic we know that this bug may not be completely gone. I wish you would get some good news too. You deserve a break!!!

 

[jodijp]

Oh no, so sorry the MAC is still giving you such problems.
Truly, it is pure <img src="i/expressions/devil.gif" border="0"> .

I know it took 1 1/2 years for me to culture negative, so maybe it will just take more time. I know how frustrating it is to have such a bad bug linger & not go away. And I totally know what you mean about 'that feeling' - it is very unmistakable.

I make my docs test me for it every 3 months without fail, so that if it does start to rear it's ugly head, I'll nip it before it runs.

Big hugs to you,
Jodi

 

[jodijp]

Oh no, so sorry the MAC is still giving you such problems.
Truly, it is pure <img src="i/expressions/devil.gif" border="0"> .

I know it took 1 1/2 years for me to culture negative, so maybe it will just take more time. I know how frustrating it is to have such a bad bug linger & not go away. And I totally know what you mean about 'that feeling' - it is very unmistakable.

I make my docs test me for it every 3 months without fail, so that if it does start to rear it's ugly head, I'll nip it before it runs.

Big hugs to you,
Jodi

 

[jodijp]

Oh no, so sorry the MAC is still giving you such problems.
Truly, it is pure <img src="i/expressions/devil.gif" border="0"> .

I know it took 1 1/2 years for me to culture negative, so maybe it will just take more time. I know how frustrating it is to have such a bad bug linger & not go away. And I totally know what you mean about 'that feeling' - it is very unmistakable.

I make my docs test me for it every 3 months without fail, so that if it does start to rear it's ugly head, I'll nip it before it runs.

Big hugs to you,
Jodi

 

[jodijp]

Oh no, so sorry the MAC is still giving you such problems.
Truly, it is pure <img src="i/expressions/devil.gif" border="0"> .

I know it took 1 1/2 years for me to culture negative, so maybe it will just take more time. I know how frustrating it is to have such a bad bug linger & not go away. And I totally know what you mean about 'that feeling' - it is very unmistakable.

I make my docs test me for it every 3 months without fail, so that if it does start to rear it's ugly head, I'll nip it before it runs.

Big hugs to you,
Jodi

 

[jodijp]

Oh no, so sorry the MAC is still giving you such problems.
Truly, it is pure <img src="i/expressions/devil.gif" border="0"> .

I know it took 1 1/2 years for me to culture negative, so maybe it will just take more time. I know how frustrating it is to have such a bad bug linger & not go away. And I totally know what you mean about 'that feeling' - it is very unmistakable.

I make my docs test me for it every 3 months without fail, so that if it does start to rear it's ugly head, I'll nip it before it runs.

Big hugs to you,
Jodi

 

[Jem]

Here is my expericence with MAC:

I first tested positive for MAC 12 years ago...underwent 18 months of triple oral antibiotics with no problems. I tested negative after about a year of treatment but coninued for 18 months.

Tested postive again for MAC 6 years ago...another 18 months of the same triple oral antibiotics with no problems.

Tested positive again 3 years ago (one of the three cultures done turned postive at 6 weeks. Immediately did another round of three sputum cultures and one of them turned positive again at 6 weeks so we began the antibiotic treatment again...this time I could not tolerate the triple oral antibiotics for longer than 6 months due to extreme fatigue, nausea, dizziness, and weight loss. Since I tested negative after taking the antibioics for three months they took me off of them to see what would happen. I immediately felt better. I continue to be tested every three months for MAC and have tested negative ever since. I hope to stay that way for a long time to come.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck with finding what works for you. Let us know how it goes.<img src="i/expressions/heart.gif" border="0">

 

[Jem]

Here is my expericence with MAC:

I first tested positive for MAC 12 years ago...underwent 18 months of triple oral antibiotics with no problems. I tested negative after about a year of treatment but coninued for 18 months.

Tested postive again for MAC 6 years ago...another 18 months of the same triple oral antibiotics with no problems.

Tested positive again 3 years ago (one of the three cultures done turned postive at 6 weeks. Immediately did another round of three sputum cultures and one of them turned positive again at 6 weeks so we began the antibiotic treatment again...this time I could not tolerate the triple oral antibiotics for longer than 6 months due to extreme fatigue, nausea, dizziness, and weight loss. Since I tested negative after taking the antibioics for three months they took me off of them to see what would happen. I immediately felt better. I continue to be tested every three months for MAC and have tested negative ever since. I hope to stay that way for a long time to come.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck with finding what works for you. Let us know how it goes.<img src="i/expressions/heart.gif" border="0">

 

[Jem]

Here is my expericence with MAC:

I first tested positive for MAC 12 years ago...underwent 18 months of triple oral antibiotics with no problems. I tested negative after about a year of treatment but coninued for 18 months.

Tested postive again for MAC 6 years ago...another 18 months of the same triple oral antibiotics with no problems.

Tested positive again 3 years ago (one of the three cultures done turned postive at 6 weeks. Immediately did another round of three sputum cultures and one of them turned positive again at 6 weeks so we began the antibiotic treatment again...this time I could not tolerate the triple oral antibiotics for longer than 6 months due to extreme fatigue, nausea, dizziness, and weight loss. Since I tested negative after taking the antibioics for three months they took me off of them to see what would happen. I immediately felt better. I continue to be tested every three months for MAC and have tested negative ever since. I hope to stay that way for a long time to come.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck with finding what works for you. Let us know how it goes.<img src="i/expressions/heart.gif" border="0">

 

[Jem]

Here is my expericence with MAC:

I first tested positive for MAC 12 years ago...underwent 18 months of triple oral antibiotics with no problems. I tested negative after about a year of treatment but coninued for 18 months.

Tested postive again for MAC 6 years ago...another 18 months of the same triple oral antibiotics with no problems.

Tested positive again 3 years ago (one of the three cultures done turned postive at 6 weeks. Immediately did another round of three sputum cultures and one of them turned positive again at 6 weeks so we began the antibiotic treatment again...this time I could not tolerate the triple oral antibiotics for longer than 6 months due to extreme fatigue, nausea, dizziness, and weight loss. Since I tested negative after taking the antibioics for three months they took me off of them to see what would happen. I immediately felt better. I continue to be tested every three months for MAC and have tested negative ever since. I hope to stay that way for a long time to come.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck with finding what works for you. Let us know how it goes.<img src="i/expressions/heart.gif" border="0">

 

[Jem]

Here is my expericence with MAC:

I first tested positive for MAC 12 years ago...underwent 18 months of triple oral antibiotics with no problems. I tested negative after about a year of treatment but coninued for 18 months.

Tested postive again for MAC 6 years ago...another 18 months of the same triple oral antibiotics with no problems.

Tested positive again 3 years ago (one of the three cultures done turned postive at 6 weeks. Immediately did another round of three sputum cultures and one of them turned positive again at 6 weeks so we began the antibiotic treatment again...this time I could not tolerate the triple oral antibiotics for longer than 6 months due to extreme fatigue, nausea, dizziness, and weight loss. Since I tested negative after taking the antibioics for three months they took me off of them to see what would happen. I immediately felt better. I continue to be tested every three months for MAC and have tested negative ever since. I hope to stay that way for a long time to come.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Good Luck with finding what works for you. Let us know how it goes.<img src="i/expressions/heart.gif" border="0">

 

[pmfwithcf]

<img src="i/expressions/face-icon-small-confused.gif" border="0"> After a 16 day hospital stay for a CF Exacerbation two weeks later my daughter was diagnosed with MAC. Most of the information I have read does not specifically link CF & MAC. Is there a specific website that can give me more specialized information?

 

[pmfwithcf]

<img src="i/expressions/face-icon-small-confused.gif" border="0"> After a 16 day hospital stay for a CF Exacerbation two weeks later my daughter was diagnosed with MAC. Most of the information I have read does not specifically link CF & MAC. Is there a specific website that can give me more specialized information?

 

[pmfwithcf]

<img src="i/expressions/face-icon-small-confused.gif" border="0"> After a 16 day hospital stay for a CF Exacerbation two weeks later my daughter was diagnosed with MAC. Most of the information I have read does not specifically link CF & MAC. Is there a specific website that can give me more specialized information?

 

[pmfwithcf]

<img src="i/expressions/face-icon-small-confused.gif" border="0"> After a 16 day hospital stay for a CF Exacerbation two weeks later my daughter was diagnosed with MAC. Most of the information I have read does not specifically link CF & MAC. Is there a specific website that can give me more specialized information?

 

[pmfwithcf]

<img src="i/expressions/face-icon-small-confused.gif" border="0"> After a 16 day hospital stay for a CF Exacerbation two weeks later my daughter was diagnosed with MAC. Most of the information I have read does not specifically link CF & MAC. Is there a specific website that can give me more specialized information?