Ask him about Primary Immunodeficiency. Just ask.
I bought a mediwedge ((?) foam wedge that is 6" at the top of the bed and tapers down to nothing at the foot of the bed. Unlike a situation where you raise just the head of your bed -thus bending at the waist - you are all on a tilt! Great for watching tv in bed, great for your reflex, lousy cause the sheets tend to slip off and we have to use these clippy things. Trying to prop myself up on pillows never worked, because I was "bending"at the waist and that still caused stomach pressure and reflux.
I’m scared–more so than ever. All my docs have no idea why my lungs are behaving so poorly over the past month. I really can’t afford to have more and new health issues but none of us even know why I’m doing as badly as I am or if things will get worse.
On the good side, I LOOK great. Somehow, that’s not comforting. I have tried making an appointment with the ED doc, but not sure if he will see me. If he won’t, I may be able to see if my allergist will refer me to her best friend, who is an ED as well.
I don’t want to “like” your post, HImom but I do want to send comfort your way.
Have they run chest x-rays to rule out random things like TB and some sort of pneumonia?
Those were exactly the symptoms I had before I was diagnosed. Constant pneumonia for years that did not respond to antibiotics, or if it did respond, immediate reinfection. Luckily they found out what caused my illness, but I was very near death by the time they did. And the doctors who didn’t run the correct tests for all the years prior to diagnosis tried to justify their actions by saying that they were looking for horses, not zebras.
You haven’t acknowledged my posts, but I’m hoping that you’ve read them. I was very hesitant to post such personal information on a public forum, but I did so in the hopes it would do some good.
Thanks–have been tested for many things. I am considered a very challenging case over the past 16 years. They have indeed done several chest CTs and X-rays and lots of blood tests and more. I will see two MDs tomorrow and one on Wednesday. Have been in touch without other two lung specialists via email.
We are all stumped. My allergist, whom I see tomorrow morning has good ID background and her best friend is an ID specialist. She has been treating our kids for over a decade. Our family is a puzzle.
I really do appreciate the support but do feel overwhelmed and lost. My docs are upset that I am close to panicking because no one has ANY answers. I am afraid of more permanent damage.
Yes, thanks to all, I have read this entire thread and will ask my docs about issues raised. Untangling medicsl mysteries is HARD work.
One problem with having an immune deficiency disease with no B cells (and thus no antibodies) is that any antibody-based tests for other diseases will come back negative. So there are tons of false negatives with my condition, and, not surprisingly, this condition has many, many associated illnesses so all the false negatives were a huge problem. It is a huge challenge to unravel all the issues, so I know what you are going through.
For some reason, I thought this was a new thing so ignore my last post. And I’m assuming they ruled out autoimmune through an ANA test.
I’m so sorry you’re going through this. I wish I could offer more help, but all I can do is send hugs. I do completely understand the “family is a puzzle” thing. There are four “rare diseases” in my family… of which there are only about 6 of us!
Hugs to you, HImom. Good luck with your docs tomorrow. Please keep us informed.
Good luck himom and hope the mystery gets solved.
Was at allergist for 3+ hours, had 10 vials of blood drawn. She referred me to a new doc who won’t see me until MAY! In the meantime, will see her again in 2weeks and she will try to help me be seen sooner.
Am waiting at internist. He will likely talk about my bone density and whatever other normal issues interest him. Car battery died between appts, but AAA to the rescue. Busy day.
Am relieved my allergist will take the time and effort to help me. She will see whether we should have an ID too.
Thanks for update. Sending good thoughts.
Allergist wants to add new pulmo, who works well with her and is good at puzzling cases. He can’t see me until May, but she will see me in 2 weeks, after blood and other tests come back.
Internist punted me off to pulmos and told me there are many mysteries. He wants me to just be better at accepting new, worse “normals.”
He was trying to tell me stories of his prior experiences that are meant to be comforting–big misses! He really is clueless about how to help me.
HI, I’m so sorry. That sounds awful.
I understanding trying to adjust to new “normals” but that shouldn’t be the end of the story! Yes, of course there are many mysteries but telling a suffering patient that isn’t helpful.
Please keep us updated if you don’t mind. I’ll be thinking about you. Hopefully you might even get answers before 2 weeks.
He wanted me to reassure him. He said, “You’re doing better, right?” He kept trying to convince me I was doing better they the whole appointment when I kept saying, “No, doing WORSE.”
He wasn’t trying to be awful but he doesn’t have any good ideas but will defer to the other docs.
He also was trying to convince me that NOT using O2 (while my body isn’t able to provide enough) wasn’t harmful to my heart and other parts of my body, contrary to all I know and train others about. All in all, a sad and discouraging visit.
I am very, very surprised that no one has sent you to a GI to rule in/out aspiration issues. if it were me, and I had to wait til may for the next appointment anyway, I might consider a GI consult in the meantime. it makes sense to rule OUT things when the case is complicated.
I am now having drug reaction to the two antibiotics I’m on! Oh well, finished 9.5 and 8.5 days of the drugs and we aren’t even sure I have a bacterial infection. 
Yea, I may go to the GI consult. I hadn’t expected the appointment with the new doc to be until May. I have no idea when the GI is available.
Sounds like it might also be time for a new internist, but I guess you should take care of everything else first.
Yea, I am too pooped to be hunting around for MDs. Perhaps one of the new docs will recommend someone to be the new internist who can help coordinate care.
Near-consensus about stopping both ABX due to allergic reaction. Took some Benedryl and waiting for swelling to go down–no change, even tho took 50mg!