New wrinkle–am now near the annual out-of-pocket cap for my medical insurance in this 1st quarter of the month! After this, my insurer will pay 100% of my Rx and all covered copays! Haven’t paid this much out of pocket in many years!
Stanford has me paying over $1900 of the $19,000+ bill. Oh well, glad to have good insurance.
Have just gotten a reply from my Denver pulmonary specialist, who recommended several tests that he says any doc can order so we can get info before I see the GI in July. I will see which of my docs will order the tests. He also recommended an exercise test with arterial line, to see why I am desaturating IF I still am and if there is something else going on that we need to pay attention to. I believe there is one or perhaps two labs on my island that can test for this. Will see 4 docs next week and probably be able to get one or more of the docs to order the tests he recommends–not sure if they need to be pre-authorized by insurer.
@HImom: So sorry you need to be coordinating all of this, at the same time as not being well. Not fair. Hopefully this will bring some answers.
I’m just grateful that I have docs who are so far willing to work with me. Just bought a nice box of HI edibles for my doc in Denver who has kept in touch with me via email for nearly 16 years! He’s a gem and has sustained me through a lot of challenging times. I thought about getting him something different, but my friend who is a nurse married to an MD suggested I stick with HI edibles, so I am.
Macadamia nuts? What else??
Yes, I did send him some of those mac nuts, as well as other goodies and a book from Costco as he loves reading. I will drop it off at the post office today. I just prepared some summaries for the docs–short summary of relevant medical history with the names of the tests recommended by one of my MDs, current medical providers, allergies, current medications, current conditions. Also list of what I’d like and questions I have.
I’m glad I’m feeling pretty much back to normal, but I just want advice and a plan as to what we should do if I have future infections, since I tend to get infections up to 4x/year or more and need to know what I can take and for how long, also what to do if I react to any new meds.
Don’t forget to ask about primary immunodeficiency disease. 
Yes, will ask the allergist. She did a slew of blood tests. Thanks for the reminder. The ID doc may have some new insights to offer as well. Will see both the ID doc and the allergist on Monday. Hope I don’t overwhelm either or both of them.
ID doc said I am very complicated and suggested I consider a consult with a Stanford ID, since I’m going to see my pulmo there anyway. My allergist thinks this is a great idea and suggested I have a Stanford allergist consult as well.
The ID doc says I can treat the latent TB, but it’s my choice. He was running very late – saw me at 1:30 for 11am appointment.
The allergist found high eosinophil count and is considering treatment treating with a new injectable med, Nucala.
She also wants to repeat hypersensitivity pneumonitis panel, as she had some very high results for molds and pigeon droppings.
She thinks central A/C with dehumidifier and HEPA filter would be good for me and would prescribe.
Will be repeating blood tests, doing barium swallow test and researching central air systems.
Do NOT have immune deficiencies.
Have any of the doctors mentioned parasites? It’s always a low probability possibility, but must be considered with a slew of wacky symptoms(including high eosinophils) and no diagnosis.
How does one test for parasites and who would order such testing? No one has mentioned parasites so far and that would throw more complications into the mix, possibly.
I guess things like chronic Lyme could be diagnosed via blood or stool testing, but you’d have to have some idea of which parasites you are screening for. My kids have been tested, especially D, but not me, so far. The allergist who is working with me tested D–I can ask her if that might be fruitful. I’m not having symptoms like my kids, but I guess it can manifest differently for different folks.
Have you tested your home for mold ? My cousin, a realtor, had a client with extreme sensitivity issues, who would Swab the prospective home for mold. And surprisingly many turned up positive. Cost for this swab mold testing $1500.
I have known about people with extreme sensitivity.
I know this is terrifying but this girl has been cured.
http://m.pressofatlanticcity.com/news/press/atlantic/mold-keeps-woman-confined-to-her-tent-in-somers-point/article_b148ad22-afce-11de-979b-001cc4c03286.html?mode=jqm
And the good news - treatment
New treatment
In November, the Parkers visited Dr. Irene Grant, an infectious disease and internal medicine specialist based in Tarrytown, N.Y., who has treated people with mold-related illnesses for more than a decade.
The pigeon droppings score was the highest of all the blood tests, but we aren’t keeping any birds, tho we DO have trees, bushes and vegetation, as well as birds outdoors in yard and neighborhood.
Have you had dryer vent cleaned out- my mom and sister both had bird’s nests in dryer vent !
Molds can create nightmares! A friends’ kid developed what looked a horrible, untreatable pulmonary issue - it turned out that the dryer in their apartment was not connected to the vent (hose simply fell off), and it was venting moisture indoors. This moist environment apparently was haven for mold… Dryer was hooked up and apartment deep-cleaned - the kid’s coughing gradually went away.
Also, another reason to have venting throughout house cleaned by mold specialists, too.
We have no vents, other than dryer and attic. We stick with open windows. Dryer vent has a flap and is intact. There are intact screens on all the attic vents.
Well, it looks like I may be going to see my doc at Stanford in May and a bunch of docs in Denver in June. It’s very confusing. I’m glad H is being very supportive about everything. It’s weird when we are traveling for medical appointments–again!