Want to share my experience at Columbia University today.

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scorpio1960
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Date Joined Jan 2009
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   Posted 6/24/2009 6:35 PM (GMT -7)   
I went to Columbia University today for another SPECT scan and the nurse who inserted the IV told me that I was the 7th SPECT done today in connection with Lyme Disease. She told me that she only recently was transferred to nuclear medicine where the SPECT scans are done and had no knowledge of all the controversy until she was transferred to that department. She was so passionate and genuinely angry about the current situation.

Also, the nurse who comes to my home who is not affiliated with Columbia told me there has been a tremendous increase in the number of Lyme patients in the past few months.

Maybe it's just wishful thinking on my part but I really believe something is going to give and soon. I hope!!

ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 6/24/2009 6:53 PM (GMT -7)   

scorpio1960, I am glad the nurse was compassionate and understanding.  It makes a big difference.  

I hope your test results come back  fine.


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/24/2009 7:25 PM (GMT -7)   
Thanks Ticker.

I'm not sure if it's just because I'm now finally aware of LD and all it entails but it seems everyone I speak to lately knows someone who has been affected by this horrible disease. How much longer can the IDSA get away with their bs?

RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 6/24/2009 8:58 PM (GMT -7)   
scorpio, in my persinal app i feel this will go one till it personaly affectes them or someone close to them. and thats so sad too.

i to was in a dark about lyme. knew it was out there, but didnt give it a tought till it hit home.
to bad this is a wake up call for so many.
   RD
                                                                                                                 
 
still looking for answers
 


hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 6/25/2009 4:58 AM (GMT -7)   
I still feel in the dark about Lyme and I've got it.

What is going to give? IDSA? I don't think that even if massive antibiotics becomes accepted as treatment that anyone's going to prescribe them like that. They don't do that for anything but MRSA and even then not forever like us.

So what's gonna give here? A cure? Nah. We've got that -- it's call massive doses of antibiotics forever.
Bit June 08.


ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 6/25/2009 5:55 AM (GMT -7)   
scorpio1960, I am not surprised that you talk to a lot of people who know someone with Lyme because it is so prevalent.  Mainstream doctors need to realize this and learn how to properly treat it.  Of course this is easier said than done.
 


hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 6/25/2009 6:31 AM (GMT -7)   
We need to know what proper treatment is.

How much and how long -- antibiotics.
Bit June 08.


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/25/2009 6:45 AM (GMT -7)   
I'm just glad that at least one major medical center in the country is finally acknowleding Lyme Disease and hopefully others will follow.

scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/25/2009 6:50 AM (GMT -7)   
Hopefully, the doctor will have the results by next week before my appointment. I had one done in 2005 when I was being treated fro CFIDS that showed moderate to severe abnormalities so I can't imagine what this one will show. lol I'm definitely much worse off than I was back then.

KO-LD
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Date Joined Aug 2007
Total Posts : 887
   Posted 6/25/2009 7:11 AM (GMT -7)   
Scorpio1960,  I'm so glad you had a nurse that really cared instead of one that looks at you like you have a third eye in the middle of your forehead!  Hope all goes well with your scan, post when you get the results!  Take Care, KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/25/2009 7:49 AM (GMT -7)   
Thanks. I was impressed with how passionate she was about it and how much she knew. As the number of documented lyme patients keeps growing it will become more difficult for the mainstream medical community to ignore, hopefully! I would think having a major medical center support the diagnosis of LD by acknowledging and documenting the damage caused to the brain by Lyme in many can only help our cause.

Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 6/28/2009 1:02 PM (GMT -7)   
The doctors who did my spect at NY Presbyterian were also amazing.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/28/2009 1:48 PM (GMT -7)   
Cmacaran, I'm glad you had a good experience too. Columbia is affiliated with NY Presbyterian so we probably had our SPECT's done in the same place. lol Columbia has an entire department devoted to Lyme Disease but I'm not sure if they follow ILADS treatment guidelines or not. At least they take is seriously enough to conduct their own research and continue to look for answers.
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