posted
Yes, I could journal the old-fashioned way, but am wondering if anyone has heard of a program
that lets you journal in the 21-st century way? I could always try to make entries in Word, but is
there something better out there? Need to document lack of care at facility,
Keebler, you know which one. I was denied care from a pituitary endocrinologist and dismissed
from practice. I fended up in the facilities ER because I ran out of meds and was without
cortisol. A year and more later, I'm losing another pituitary hormone and now this pit
endocrinologist is "popping" in to a fellows clinic, docs in training, to appear as if
something is being done. I already left a message with the patient advocate that either I have a
pituitary situation or I don't and that I am not a teaching tool, I am an inpatient patient.
Since when is seeing fellows adequate care in a complex medical situation?
Posts: 482 | From Oregon | Registered: Feb 2011
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Keebler
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- A fellow is actually a coveted position. They are "real" doctors by then, just usually right after their residency.
Seeing a fellow is a step above a resident, and two steps above an intern. OHUS is a TEACHING facility. It's just the way they work. Everyone who goes there is assigned those in training. Everyone. For everything.
If you are physically in any of their buildings, you are considered a teaching tool. I don't like it, either and I was lucky enough to stop going there years ago.
The patient advocate is your best bet for how to manage this matter.
But, quite frankly, OHSU is so anti-lyme that I would not trust anyone there to treat anything. Not educated well enough to know how lyme changes so much about a body, especially the HPA axis.
I thought you were seeing a good LL ND in the SW area. If so, she is far more capable in such matters -- although for some kinds of (non-challenge only) tests, OHSU can help with that function but they may not do the test correctly. Ask your LL ND what she might suggest. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- As for an organized journaling program, I'd just start with google and a few cross searching with various terms.
Something of a dairy might be what you have in mind with date pages. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Well, I guess you'll have more luck if you spell DIARY as it was intended, eh? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hah, hah, I like the dairy spelling. I guess my point is that if an OHSU fellow or others need to
order an anti autoantibody test of the pituitary, they are the ones to do it. I am suspecting after
much, much research, that it might be a blood flow problem in the vessels of the pituitary. Not
sure if it is in the hypothalamus or pituitary or if I may have an incidentaloma that is too small
to be dectected on MRI. All of this is beyond Dr R.'s scope. What we need here is a lyme literate
pituitary endocrinologist, and there aren't any of them, yet.
Posts: 482 | From Oregon | Registered: Feb 2011
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Keebler
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posted
- OtterJ,
wonder why you single space? If you must for your eyes, fine. Do so. But if you think it helps most read it, it's actually much harder to read than short paragraphs. Just wondering.
If you have concerns other than what you think anyone at OHSU who sees you can tackle, be as open with them as possible with your thoughts and questions. Some are very nice people and well meaning in their own discipline. And they will include others from other departments when they see the need. Ask about blood flow, then.
But also know that "thick blood" is often with lyme and other TBD. The kind of confirmation you seek in tests may not be there but, if it is (and it does not need someone LL) then do ask the fellow you are assigned to.
I found Dr. R quite able to answer lots of questions I had about hormones. Still, you are on a different path. For what you seek, I hope you find it and that it gives you what you need.
LL endocrinologists are very rare. There may be one or two in the U.S. and it sounds like you may want to find them. Perhaps you might happen to have a friend of relative where they are? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- anti autoantibody tests are still not the end-all, be-all confirmation that we might think. The immune dysfunction caused by lyme, et.al. can CAUSE these kinds of reactions.
ANAs and other autoantibody irregularities have been known to reverse when a person with lyme reaches remission.
Many likely treatments from the regular world of medicine for auto-immune issues involve steroids, very dangerous for someone with lyme.
And, you might find someone experienced with LDN. [Some NDs are and certainly your LL ND would know about this. Maybe someone up at OHSU, you can check.]
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