big university hopitals??

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sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 3/21/2009 10:45 AM (GMT -6)   
Anyone had experience with some of the university hospitals such as UVA or Mayo clinic I have a lady telling me her doctor wants to send her to UVA for LYme and Im not sure how to tell her they are not going to treat her for LYme there she dosent have money to throw away! Any input appreciated ,I dont want to give her false hope either!

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 3/21/2009 11:28 AM (GMT -6)   
Well, I have an acquaintance on another forum who wasted some time there -- UVa. They uncover many mysterious auto immune disorders in women -- they found one for my cousin when no one knew what was wrong. They diagnosed her and confirmed the diagnosis at Mayo Clinic in Rochester, Mn. Her only treatment for this disorder with a long name no one can spell or pronounce -- with corisone shots.

Seems that the only folks who treat Lyme Disease our LLMDs. And for the most part, this treatment goes on for years. I'm on month seven right now.

So, maybe it wouldn't hurt to be checked either way?

Just see what they say. It's an excellent place to go for a diagnosis. I just don't know if they know how to diagnose or if they believe in something called "Chronic Lyme Disease".

Lots of luck!

naturebabe
Regular Member


Date Joined Mar 2009
Total Posts : 37
   Posted 3/21/2009 1:32 PM (GMT -6)   
I'd definitely stay away from Westchester Medical in Valhalla, NY. I went there beginning of last year for their "lyme clinic" hoping to get help. Well, I wasted 9 months and immeasurable amounts of energy, $ and emotional and physical pain. It is the ANTI-LYME clinic. The "lyme doc's" there are paid off by ins companies and have financial stakes in denying lyme claims. This is not my opinion, it's fact.
Age 32
Bitten age 11 yrs old, WB positive age 16. Treated IV Rocephin 4 months PICCline. Herx/anaphylactic shock-almost died.

Relapse in 2005, age 29. New and old lyme, WB positive.
Babesia, Bartonella and Mycoplasma positive via VEGA machine and EAV machine testing. Awaiting blood test results. Pretty sure I have them all.

MRI w/contrast 6/08. 2.8mm pituitary tumor. MRI w/ contrast hurt.
MRI w/ contrast 12/08. Pituitary tumor grew to 3.0. MRI w/ contrast was EXCRUCIATING. NEVER another MRI w/ contrast again in my life!

Extreme, OFF THE CHARTS migraine and neck/skullbase pain.
Severe reaction/heart attack to FROVA (frovatriptan) migraine medication on 1st dose. Heart never the same.
Tachycardia up to 165 bpm.

Doxy and malarone 6 weeks November 2008-then broke out in full body red itchy hives, discontinued med by doc order.

Started Biaxin/Plaquenil Feb 2009 for 1 week-went to hospital with EXCRUCIATING migraine I've had for months-hospitalized almost 2 weeks, with not much relief. Head is still splitting open/neck skullbase pain. Med's were discontinued.

Started New LLMD, Dr. C.
Zithromycin started 3/10/09. Throat constriction today, 3/18/09. Ordered to stop Zithro. I DON'T WANT TO STOP ZITHRO! This is the only med so far I've responded to!!


firefly16's Mom
Regular Member


Date Joined Sep 2008
Total Posts : 20
   Posted 3/21/2009 7:04 PM (GMT -6)   

 Naturebabe,

   Has anyone ask you about Chiari 1 malformation?  This can cause the migrains and base of neck pain.   It will show up on Brain MRI.  Do you have any other nerve type symptoms?  Hope things get better soom.


Lyme Mom for 10 years, looking forward to a lyme free life for all.


MAYBELYME
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 3/26/2009 9:33 AM (GMT -6)   
Went to Duke University Medical on 3-23-09,been sick for two years.They told me Chronic Lyme does not exsist in NC. So I said what is wrong with me,said I don't Know.Been seeing an LLMD and on abx,guess thats about all I got. All doctors are a waste of time get to a LLMD. Went to Duke And got stuck a few times with a safety pin,What a Waste!!!!
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