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
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