Hi Barbara -
I know this is all so frustrating. At the time of my diagnosis, I turned out to be suffering from low iron, which I never had in my life. I also read that MAC thrives on iron, and I tried to do more research on it but I couldn’t find much at all. I believe the MAC infection was the cause of iron deficiency. I was experiencing a kind of dizziness/vertigo every night. I thought maybe I had an inner ear infection from Covid, but the ENT found nothing and suggested I see a neurologist and have a brain work up!. My hunch, supported by my research, was that it was the iron deficiency, so I decided to wait and see how I felt after being on it for a couple of months. It made all the difference in the world! I now check it from time to time to make sure I’m still good and that MAC hasn’t depleted me once again. I can’t imagine that getting the infusion was bad for you if you needed to replenish your stores, but of course I do not have the expertise to say. I liken my body now to an older car (not that I’m so old - I’m only 61). You can get away with things like not checking your oil or using a so-so mechanic who only knows the basics with a new car in top condition, but with older cars, one really needs a skilled mechanic who understands the inner-workings of all the bits that make the engine go. I think the same is true for our bodies, but not many doctors have or will take the time to look at the overall organism with an eye toward maintaining the delicate balance between all the moving parts. It’s frustrating for sure - thank God for the Internet and our ability to research so much on our own and advocate for ourselves. And of course thank God and Mayo Clinic for this forum. Can you imagine if we didn’t have these???
Hang in there, Barbara!
Lost my first response so here goes again.
Jill I had to chuckle over the car/human comparison you gave. That is one I use all the time also. Yes, we need a skilled and experienced medical person and mechanic, they both have our lives in their hands. Another one I use is when people imply there is not much of a difference in people regarding ages in some instances, like health age. I usually say something like this: “When you compare an infant to a five year old or a five year old to a ten year old there is quite a difference.” The number of moons having passed in one’s life does make a difference in many ways, generally speaking. As in 61 compared to 82. HA!!
Jill I was having dizziness and vertigo a good few years ago and “I” (“my hunch, supported by my research") discovered it was very low vitamin D that was partially caused by medications after a surgery. I started taking a very high dose of D and the cut back to the amount I take now. That is the only thing I did differently and it appeared to be the answer to eliminate the dizziness and vertigo, for me. I would imagine you have had your doctor taking Vitamin D test(s) by now???
My list of questions for the doctor keeps growing. Hope she has /gives me time to ask and discuss all. Medical people are so busy and especially this pulmonologist. She is heavily involved with research and conventions specifically for Bronchiectasis.
Yes, thank goodness for all the good aspects of the internet and this site for us to go to with all the caring people on the Mayo Connect.
Yes, hanging.........in there.
Hope your day is going well for you.
Barbara
Pseudomonas binds to iron. I know you are all too familiar with Pseudomonas. To date, as of yet, that has not been found in my sputum. With my next visit with the doctor my question will be about iron etc. with MAC since she did not contact me after the blood test results were showing poor results such as a problem that can be associated with iron.
Barbara
Connect
Connect
Like
Helpful
Hug
Lost my first response so here goes again.
Jill I had to chuckle over the car/human comparison you gave. That is one I use all the time also. Yes, we need a skilled and experienced medical person and mechanic, they both have our lives in their hands. Another one I use is when people imply there is not much of a difference in people regarding ages in some instances, like health age. I usually say something like this: “When you compare an infant to a five year old or a five year old to a ten year old there is quite a difference.” The number of moons having passed in one’s life does make a difference in many ways, generally speaking. As in 61 compared to 82. HA!!
Jill I was having dizziness and vertigo a good few years ago and “I” (“my hunch, supported by my research") discovered it was very low vitamin D that was partially caused by medications after a surgery. I started taking a very high dose of D and the cut back to the amount I take now. That is the only thing I did differently and it appeared to be the answer to eliminate the dizziness and vertigo, for me. I would imagine you have had your doctor taking Vitamin D test(s) by now???
My list of questions for the doctor keeps growing. Hope she has /gives me time to ask and discuss all. Medical people are so busy and especially this pulmonologist. She is heavily involved with research and conventions specifically for Bronchiectasis.
Yes, thank goodness for all the good aspects of the internet and this site for us to go to with all the caring people on the Mayo Connect.
Yes, hanging.........in there.
Hope your day is going well for you.
Barbara
If iron binds to MAC as it does to Pseudo the same advise may apply? That is why I mentioned it.
-
Like -
Helpful -
Hug
1 Reaction