Oh, HIMom, hope someone will be able to figure out the right course of treatment instead of just throwing darts in the dark. 
You and me both, @BunsenBurner.
Would it be possible to make a visit to Mayo or similar diagnostic specialist group where everyone might sit around the table and put their heads together?
This has to be awful.
Sorry to hear how frustrating this must be for you. For those who were HOUSE fans - you know he always sent his team out to investigate the homes of people who had mystery illnesses- sorry to even say this but might you have mold issue in your home ?
My pulmo agreed to work with my other docs to figure out the mystery and referred me to a new ID doc to help us figure out what to Rx if I have future bacterial infections, since I tend to get several/year.
Well, things are SLOWLY improving over time, instead of continuing the downward decline. We still have no idea what started the downward cascade.
Hand is still painful and tender from allergic reaction. Am getting additional testing & results and seeing docs over next few weeks. Sure wish we had a clue what we are dealing with.
Well, have been able to stop meds for the allergic reaction and will see how the tests go on Tuesday, as well as all the blood tests which were ordered and the repeat chest CT.
Wishing you the best, HImom.
Thanks–I am grateful to have docs, RTs and RNs willing to help me figure out what’s going on. It is a journey and H is grateful I’m no longer a grouch, now that things are improving. 
Just called my allergist’s office and asked her to have all the blood test results sent to the ID doc as well, so he can puzzle over them and add his insights.
I’m also THRILLED that I found my lost expensive oximeter! I had my cheaper one but couldn’t figure out where I lost my much more expensive (and responsive) one (it was in a seldom used briefcase), so now I have two working devices and was able to salvage the recovered one, even though the battery had leaked thanks to baking soda/water paste and some alcohol. Phew!
Just made an appointment with the GI–his 1st available is JULY! I took it, but sheesh! They said if I had something stuck in a duct, it would be an emergency and they’d try to schedule it for sooner, but wow, that’s some wait! The new pulmonologist will be in May, which I thought was a long wait. I’m glad the infectious disease guy will see me in the beginning of April. I’m so grateful things are slowly improving on their own and shudder to imagine if I was still as bad as I’ve been most of February!
Sorry to derail this thread, but want to comment for those with GERD - my H was suffering badly from Gerd for a number of years - he changed diet, lifted our bed and added a tilt pillow, tried to eat less and at least 4 hours before bed, etc. Nothing really worked and the GI kept upping his dose of Prilosec. Finally he said this is crazy to be taking such high doses and no relief - the GI had no answer, so he went to a homeopath out of desperation for something different to try. Fast forward - within 6 months he was completely weaned off the Prilosec with great results! Its been 2 years now, he is still off the Prilosec completely, but he does still restrict his diet from his primary offending foods. He has symptoms if he goes off track with food choices or too much drink, but otherwise he has no discomfort. The homeopath has him on a daily regime of natural apple cider vinegar, probiotics, and fish oil capsules. Highly, highly recommend that if you are suffering from GERD, you check out the homeopathic route. If anyone has questions, feel free to PM me.
Sorry HIMom for going off topic with that PSA; glad to hear you are a bit better and hoping that relief and answers are in sight for you!!
I have had experience with an excellent ID doc. I only saw her after years of pursuing dead ends for years. @nottelling mentioned IgG testing…a very good idea. I think @romanigypsyeyes mentioned a TB screening. Both of these should be standard screening with every ID. I know this is tough, but at this point you may have to get copies of all your lab work from each doctor yourself. You’ll have to carry a copy of your medical history to each new doctor…so it’s best to have you be the central historian.
Good wishes for you and your family!!
Thanks–just got back from breathing tests at the med center, which were similar to the test 6 weeks ago. That was a relief and will give the docs more data.
Lots of folks with lung conditions have reflux, including silent reflux with virtually no symptoms. It can still worsen breathing. Will definitely consider homeopathic route if reflux is an issue, but since oral steroids and antibiotics are done, no noticeable reflux.
I did have a quitiferon test for latent TB. It was not negative, so one more thing for ID doc to consider along with all the test results my allergist ran and the Stanford pulmo ran.
Good news, HImom. Hopefully this data will help doctors 
Negative Quantiferon is a good thing. Glad that you are doing better. Fingers are still crossed.
Mine was positive–low, but not negative. I think it means I was exposed to TB, which makes sense since two of my sibs had to take ABX for it when we were kids. I’m sure the ID will help us figure out if I need to do anything about the results, including possible further testing.
Oops, I misread your post. Definitely have the ID doc have a look at the results and figure out what needs to be done if any.
good luck, @HImom – I second the suggestion that you grab a fat 3-ring notebook and pull together your medical records; maybe with sections for lab results, radiology/non-lab testing/pathology, and OV/Surgical records. I had a pretty good index at the front of the lab results section - date, general type of lab tests. It was helpful three ways: Docs could easily grab a copy of any that they wanted, it let me avoid some unnecessary repeated tests, and it made it easier to track some immune results over time.
Thanks. I will do that. I printed out results of all the tests I had done in February. I will get copies of all the others as well. They aren’t sending all of them to me, so will have to go to the doc’s offices to get the tests, even tho I’m supposed to get copies.