Is anybody located near Farmington, CT. UConn Hospital?

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Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 9/13/2009 11:06 AM (GMT -7)   
Near the Univ of CT hospital?
Does anyone know if any doc associated with the hospital is lyme literate?
I would love to link up with someone while I am there.
I will be there starting the 22nd...
Thanks so much,
Tracy

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 9/13/2009 2:51 PM (GMT -7)   
Don't think it's the best hospital to get help for Lyme. Do you live in CT?

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 9/13/2009 4:44 PM (GMT -7)   
Hi!  No, I'm not too local, about 2.5-3hrs away.  However, a metabolic specialist / endocrinologist has agreed to see me, and I know she has worked with severe adrenal insufficiency.  I got a good recommendation.
 
So you have had experience with the hospital?
Hey, can you send me your e-mail address or other contact info?
It's not on your HW profile.
THanks so much!
Tracy

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 9/13/2009 6:03 PM (GMT -7)   
Tracy,
I have not had any experience from any doctors there. But from what I have heard the docs there follow the IDSA guidelines for treatment of Lyme. There are LLMD's in CT that are ILADS doctors. You would be in much better hands with one of them.

Also, it may take a few months to get in with an LLMD. There are not that many of them.

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 9/13/2009 6:09 PM (GMT -7)   

Hi lovelabs,

I have an LLMD (actually a few).  Have been to most in the tri-state area as consults and as patient.  PA and MD too.

No one can figure out my adrenal issue and why I've had these dehydration crises.  Cannot find an endo to accept me as a patient.  Alternative therapies aren't working to support my adrenals. 

So really I'm not going there for lyme treatment, I was just curious if there was an llmd on staff there.  It's always helpful to know, thanks for the heads up.

It is always scary to go into the hospital when you have complicated illness.  Do you know of another local hospital that seems to be more open to lyme, in the case that I am really struggling there?

 


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 9/13/2009 6:28 PM (GMT -7)   
I don't. Especially in CT. Why won't an Endo accept you as a patient? Isn't that there job to try and help you? Wish I could be more help. Did you have luck with treatment when seeing an LLMD? Or not and that is why you had more than one?

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 9/13/2009 6:48 PM (GMT -7)   

Hi, I'd prefer to chat offline, to write me back, if you feel like it, you can click on my name and my e-mail address is there. Thanks.

I did see Dr. E ongoing (NJ) and now have another LLPA and LLMD that I see (JS, JM).  None seem to be able to figure out or control my strange parch waking dehydration episodes.  I have some sort of genetic piece that is intertwined here, metabolic anomaly likely brought out by lyme and opportunistic infection.  My docs are insisting that I keep seeking out an endo who will take me on.  Not many doctors want to take on a patient whom is a bit of a puzzle or whom they have no immediate answers for.  Not many are willing to experiment, to look at a bunch of paperwork that I come with, etc., etc. You probably know the drill.  Since I struck out with a lot of endo's (I have neither Cushings nor Addisons), I tried to get consults with different LLMD's to see if any of them had seen this bizzare sleep issue.  This doc that I was recommended to has treated people with salt-wasting (LO) Congenital Adrenal Hyperplasia, which was my former diagnosis.

Regarding the rejections, a lot of us have had them.  If they don't reject you directly, they say things like 'there's nothing wrong with you that I can see' or 'this is impossible'.  The most recent sleep doc I saw actually said that the sleep test that NYU did had impossible results: "You had 147 jerks prior to Ativan?-Impossible".  These jerks should be intermittent and mild, he said.  And with that had no interest in helping me.

How many of us have been turned away from docs or hospitals, our applications denied, because we have Lyme?  I applied to them all.  One I got wait listed for, and they said it would take at least a year.

It's like applying to college, only your life is on the line!

Ok, ending this public thread.
Thanks, Tracy
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