Topic: Has anyone here participated in the SPECT study yet?
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
If so, can you share your experience?
thanks, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
up.... no one?
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
robi~
If you mean the spect research study currently going on at Columbia University, my answer is "no."
I was evaluated at Columbia a year ago and did have a spect scan done as part of the evaluation at their Lyme Disease Evaluation Center.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Yes, I meant the reseach study. But I would be interested in hearing your experieice with the eval.
Did insurance cover the eval?
Thanks, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My insurance covered all the labs (about $2000 worth = 16 tubes of blood from me); and it covered the spect scan ($1400). The evaluation by Dr. F and Dr. C was $3200. They have paid basically half of it, and they are still dinking around with the rest of the money, but I think they will be paying it all. They are checking to see if Columbia had a contract with them for a discount amount (which they don't) and when they realize that, they will be paying me the rest.
The eval was LOTS of neurocognitive testing....hours and hours of that. LOTS of blood work, to rule out everything else under the sun. And 2 hours talking with Dr. F, going over history and previous tests.
This was followed by an hour phone consult when all the results were in.
For me, it was worth it. I got an objective eval of what the heck was going on with me, and with his recommendation that I needed IVs I went on IVs.
His written report also gets handed out to every doctor that I saw before hand, and every doctor that I see now, in hopes of educating those that will listen.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Thanks for the details..... I really feel like my head is messed up. Need to find out what's going on. My bite was in my head.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Well, Columbia would be one place to go. It is pricey though. My brain spect showed "moderate, global, cortical hypoperfusion with heterogeneity consistent with encephalitis or vasculitis as from infectious (Lyme), autoimmune causes or secondary to some medications."
Since I don't have autoimmune issues, or wasn't taking medications that could cause such an abnormal brain spect, then led Dr. F to believe that Lyme was the most probable cause of my issues.
My brain and CNS symptoms have cleared up SUBSTANTIALLY being on antibiotics. How long have you been in treatment?
Good luck....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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