Ok, am now also scheduled to meet a younger new pulmo at UCSF, to see whether she might be a great new pulmo for me to considering transferring to. She is in addition to the other MD visits. It will be a busy few months and I hope we will glean some good new insights from these visits. I am grateful for everyone’s help through this challenging journey.
Sending you wishes from New Jersey that your medical mystery is solved by one of your renown Drs.
"Team “himom” is impressive list, surely you will make one of them famous for solving this case- your story would be a good one for NY Times Magazine weekly medical mystery!
I’d REALLY prefer NOT to have ANY medical issues and especially ones that are complicated and leave my local docs nervous and scratching their heads. I am grateful for good medical coverage and amazing, dedicated MDs.
^ oh for sure Himom- the worst thing to hear from Doctor " interesting and unusual case"
I hope you have a Dr House who can solve the mystery ( with good easy fix of course )
I’m actually not expecting a “fix,” but need someone to work with when I have inevitable infections to treat promptly and properly. That is something that can occur every month to every 18 months, and each infection worsens my health.
I am ok about living with a chronic health condition (have been doing so for over 16 years), but I and my local docs need some guidance on the risks/benefits of available treatments and minimizing allergic reactions to treatments.
Phew, just got off the phone with one of the admin folks for my CO visit. Was concerned because only a few of their providers were showing up as participating and preferred on the national BCBS.com database. Was told that ALL the providers are participating and preferred. Gave them the phone number to fix that issue and they will have their contracting office follow up to fix the glitch.
Great news–just had an appointment with a new Pulmonologist in HI. He LIKES puzzles and is willing to take over my care (my current pulmo really dislikes complicated cases–I am clearly complicated). He even knows my Denver pulmo.
He’s also willing to join my board of directors and speak at our big event this fall which draws 200-300 attendees.
Will see him again in two months to go over what I learn from all the docs I will be seeing this month and next.
Local pulmo just texted that he sees his role as providing care during acute problems in HI, so no toes are stepped on. Sounds good and sensible to me. 
We are leaving soon for the CA doctor visits. Next month will be the Denver ones. ;
He reneged on joining the board but will still speak at our major event in the fall.
It sounds like things are coming together, HImom. Best wishes that you will get some answers… and that the airplane ride is a healthy one!
OK–tomorrow will meet new infectious disease specialist at Stanford. Here’s hoping she has some new ideas and insights about how to treat me and can help sort out which allergies I really have and what to do about them. She trained at Harvard and had some training in Rapid Desensitization which she gave a CME presentation at Stanford about, which could be useful for my situation. So far, am healthy and having no problems from the flight here. We’ve been having great meals, exercising and lots of rest. ;). As a special bonus, S flew out and joined us over the weekend, before he headed for a meeting in a nearby city. 
Good luck, HImom. I’m eager for you to post what she says.
I hope it is a very productive day, Himom. Good luck!
Yippee! Had a GREAT visit with the ID Doc. She was VERY reassuring and said I am NOT complicated and with supervision, I can take all the antibiotics I have had some reaction to in the past, perhaps in smaller doses than they had been having me on, given my smaller mass than the people commonly in the Rx trials.
She will be sending an evaluation to my HI docs and also one to me. She says there is no reason to desensitize me as I don’t have immediate reactions and what I have sounds more like adverse scents than true allergies.
She says she can be available for phone calls if my local docs need to call her in the future. She’s looking forward to workng with my allergist’s daughter, who will be doing her internship and rotation at Stanford starting this summer. She even knew the her name!
Wow, sounds like you had a very productive trip, and the doc is worth her salt.
“…perhaps in smaller doses than they had been having me on, given my smaller mass than the people commonly in the Rx trials.”
This!! It is amazing how mice are always dosed in mg/kg during studies, and yet after all of these studies most human meds get prescribed in “one pill fits all” format. Some people do need fine-tuning.
Yea, I’m happy that the doc was about my size and same ethnicity, so I expect she knows firsthand about dosing issues and like me may be sensitive to meds.
I have brought this issue up before at medical conferences, but it never gets much attention. I think some of us are much closer to the weight of a child than the ‘average’ weight of many of the trial patients.
@HImom, how much do you weigh?
I’m about 135 pounds, with shoes, jacket and street clothing on. I have fluctuated between this and as low as 115. Have been about 125 and 5’ 5.5" from age 12-13. Am still same height.
Many trials are done with people who are heavier and older–200+ pounds and up.
Interesting. I’m 105 and no one has ever mentioned changing the dosage based on my weight.
I don’t know. Adverse effects do tend to be dose-related. I am already taking one med MWF instead of daily due to unpleasant side effects when taken daily as recommended.
We are all different kids doses are based on weight. It is odd to me that adults age19-100 should all be same dosing, regardless of weight or conditions.
Most drugs are fine within a wide dose range. Efficiency in prescription trumps individualism. However, some even relatively common drugs are best prescribed individually (some co’s realize that and have several doses - for instance, certain BC pills come in several dosages).