Jentayler....welcome to the group! Where do you live may I ask? Terri d

State College, PA

@jentaylor, is your name Jen? Welcome! So glad you found us! Don't worry a bit about "correctly" .. we are not very formal around here .. just try to help each other out the best we can. Jen, because of SOOO many stories I have heard over and over of people with complicated histories. My question .. are you being treated by an Infectious Disease doctor who treats other MAC patients .. so they are REALLY familiar with our disease? Because of your history I think you have to be very careful. Jen, when you say "I've been to great doctors & hospitals & yet no answers. " .. that worries me. Have you considered going to Mayo Clinic, Rochester Minnesota? They truly are "mecca" .. people from all over the world go there for answers. I hope this person does not mind me quoting her but this is just a part of what she wrote and I just read:
"What my home doctors couldn't figure out for 12 years, Mayo Clinic figured out in only six months.

I want to write a book about what happened to me... due to my symptoms of P450 drug metabolisms issues, which doctors around the country are widely-unaware of, I was misdiagnosed with a rare endocrine condition, had brain surgery that I later learned I never needed (which resulted in a brain injury), etc. My home doctors were prescribing me tons of medication of that I don't properly-metabolize, making me sicker and sicker as time went on.

Jen, I am NOT saying this is your situation .. but your situation sounds very complicated and when I read your sentence " "I've been to great doctors & hospitals & yet no answers. " I immediately thought of that other woman who had been through so much before she went to Mayo Clinic. Just give it some thought .. a second opinion?

Jen, until then .. read through the past pages of our Forum .. there is a lot of knowledge about our shared MAC disease to be found there .. how to get started on the meds .. how to schedule them .. what questions you should be asking you doctors .. all kinds of things. As you read please feel free to ask questions .. we will try to answer them best we can. We are all here to try to help you .. we've all been where you are .. we know how it feels. Keep coming back .. we are here. Sending you a hug! Katherine

Hi Katherin, I wrote a very long reply than my phone battery died & I lost all that I wrote!!! I will try it again tomorrow when I'm not so tired & frustrated! Thanks for your post...I'm very eager to reply & see what you think & look at what's out there to read more about all aspects of living with MAC. Talk tomorrow...night, night! ~Jen

<br><br><br><br><br>Welcome to the forum Jen! You came to the right place. Nobody understands <br>what we go through better than this group right here. I too had this <br>condition at your age. Mine was not properly diagnosed for many years. The <br>upside is, you are getting treatment now as to prevent further damage with time. <br>We are here for you. Hugs - Terri M.<br> <br><br>

<br><br><br><br><br>Hang in there Jen! We are here for you!<br> <br><br>

<br><br><br><br><br>Jen, Katherine is right. Get yourself to a gold standard practitioner. I <br>went to 'the best doctors' in several cities I have lived in over the years. I <br>went 20 years without being properly diagnosed or treatment. My lungs have paid <br>the price. They are so deteriorated now, that I may be looking at a double lung <br>transplant in the next year or two. I got pre-qualified for a transplant just <br>this past Dec. I am on the deferred list for now because I am not ill <br>enough yet, but they are forecasting that it is coming. -Terri M.<br> <br><br>

@windwalker, Terri, thank you for jumping in .. I hate that this is true for you .. BUT nothing speaks better for new people than the truth of what people like you have gone through with poor diagnosis and medical care .. doctors who possibly were too arrogant to admit they didn't know enough so didn't refer on to someone who DID know! Doctors do not have the right to play god with our bodies .. that is why only WE must do our OWN "due diligence" .. educate OURSELVES .. and push on until we get the right answers. Thanks again Terri. Hugs! Katherine

@jentaylor, Jen, rest and take care of yourself .. we will be here when you are ready! Sending you a hug! Katherine

Yours is indeed a very complex case, particularly with the number of meds you're taking (wow!). Sounds like your docs are taking all into consideration and moving with care. I find that refreshing, as too many docs jump in without considering all factors that could, if not handled correctly, create further complications rather than addressing existing ones. If you'd feel better, a second opinion from a doc at National Jewish or Mayo would do the trick.