posted
I am not able to find the thread where someone asked about this, so am starting a new one.
They are recruiting. Call 212-543-6510.
As explained to me, and assuming that I didn't miss or misunderstand anything, the process is as follows:
(1) Screening phone interview which lasts about 45 minutes. Includes basic questions about symptoms, diagnostic testing, and treatment history.
(2) Completion of three questionnaires relating to mood.
(3) Submission of medical records, including testing and doctor notes.
(4) After review of the above information, you may be invited to NY/Columbia for a screening appointment. This visit will include some neuropsychological testing, and last 4-5 hours.
(5) If you are subsequently accepted into the study, you will return to NY/Columbia for a SPECT scan and completion of the neuropsych testing.
(6) After this visit, you will have to do an antibiotic challenge of five days on amoxicillin followed by urine testing. You do not have to return to NY for this.
You will receive the results of neuropsych testing and SPECT scans at no cost to you. The study does not include any treatment.
Additional requirements:
(1) You must be willing to stop all antibiotics for two weeks prior to the SPECT scan.
(2) You are responsible for all travel expenses to/from NY. You are paid $50 for the first visit, and $100 for the second, which should cover cab fare from the airport into the city...
(3) If you are accepted into the study and have not had a brain MRI within the past six months, you will need to have one, at your own expense. This is because the SPECT scan shows blood flows and the MRI is needed to make sure that any abnormalities that show up on the scan are not due to brain structure.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Thanks for posting, Ticked. Man, the posts are flying by these days.
This is very intriguing, and I'd really like to do it.
All except for the "you are responsible for your own plane ticket" part.
Durn.
That took all the fun right outta it.
(Considering I live in California.)
Oh well.
I know my fellow east coast Lymies will make us proud.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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after one does this, is a report, and/or a cp of the image, and other tests sent to you and/or your physician?
Posts: 2708 | Registered: Feb 2005
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posted
The initial post said you will receive the results of neuropsych testing and SPECT scans at no cost to you.
I called after reading the post. We set up the 45 min screening interview for this Tuesday. I have a recent MRI and it's a relatively easy train ride for me to NYC. The appeal for me, besides helping out with Lyme research, is getting neuropsych testing, which I doubt my insurance would cover. I hope I get selected, but I do not have a clearly positive WB for Lyme (i.e. positive by Dr. B's guidelines, but not by Igenex). Also positive PCR for Bartonella and positive titers for Babesia and Ehrlichia. We'll see ...
Posts: 164 | From USA | Registered: Jul 2005
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I was called and recruited and when I was told that I WOULD NOT RECEIVE THE RESULTS OF THE SPECT OR THE NEUROPSYCH REVIEW, I declined to participate. What is the point? If I'm going to help them out, the least they could do is give me a copy of the report.
my 2 cents
jloisu
P.S. - I've already had a SPECT anyhow so Columbia can stick it if they are going to be like that. I know they are the leading research inst. for Lyme, but they should be advocating for us as well.
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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posted
I was specifically told that I would receive the results of my neuropsych testing and SPECT scan. I would participate, regardless. Clinical trials are about the greater good, not individual benefit.
Did you speak with Samantha? I would recommend calling her. One of us was given incorrect information.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
I called today. Since I just had a Spect scan done (at Columbia) I do not qualify. Apparently they don't want to make you radioactive twice in one year! So if you've had a Spect Scan done in the last 12 months they won't let you participate. Oh well...
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
I received a telephone call today for the SPECT study. They will send me a packet to be completed. Then they will let me know if I am in.
Posts: 146 | From New Jersey | Registered: Jun 2005
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posted
I also had a telephone interview with Samantha today, who confirmed that if you are enrolled in the study as a Lyme patient (not as a healthy control) you will receive a copy of your SPECT and neuropsych testing results.
Posts: 164 | From USA | Registered: Jul 2005
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posted
Someone asked me how the people at Columbia reacted to the fact that I do not have a positive WB. My IgM had several positive bands, including 18 and 41, which Burrascano's guidelines call a positive result. Still, by both Igenex and of course, CDC, it is a negative result.
Although I made it to the next step (being asked to complete questionnaires and sending them copies of my medical records), Samantha could not say what my chances of being selected are. She did say they are looking for "classic Lyme" patients, both in terms of diagnosis and symptoms. The fact that I do not have a positive WB is a definite minus.
However, the fact that I had an EM rash and have had both joint pain (especially knees) and some classic neurological symptoms (like a cranial neuropathy) and an abnormal MRI weigh in my favor. She also said they may hold onto some potential "recruits" until later in the recruitment process. Some of the "less than ideal" participants could get recruited at that point.
I hope this information is helpful to anyone looking into the study. Lesley
[ 09. February 2006, 07:31 AM: Message edited by: lesley1954 ]
Posts: 164 | From USA | Registered: Jul 2005
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quote:Originally posted by tickedntx: I am not able to find the thread where someone asked about this, so am starting a new one.
They are recruiting. Call 212-543-6510.
As explained to me, and assuming that I didn't miss or misunderstand anything, the process is as follows:
(1) Screening phone interview which lasts about 45 minutes. Includes basic questions about symptoms, diagnostic testing, and treatment history.
(2) Completion of three questionnaires relating to mood.
(3) Submission of medical records, including testing and doctor notes.
(4) After review of the above information, you may be invited to NY/Columbia for a screening appointment. This visit will include some neuropsychological testing, and last 4-5 hours.
(5) If you are subsequently accepted into the study, you will return to NY/Columbia for a SPECT scan and completion of the neuropsych testing.
(6) After this visit, you will have to do an antibiotic challenge of five days on amoxicillin followed by urine testing. You do not have to return to NY for this.
You will receive the results of neuropsych testing and SPECT scans at no cost to you. The study does not include any treatment.
Additional requirements:
(1) You must be willing to stop all antibiotics for two weeks prior to the SPECT scan.
(2) You are responsible for all travel expenses to/from NY. You are paid $50 for the first visit, and $100 for the second, which should cover cab fare from the airport into the city...
(3) If you are accepted into the study and have not had a brain MRI within the past six months, you will need to have one, at your own expense. This is because the SPECT scan shows blood flows and the MRI is needed to make sure that any abnormalities that show up on the scan are not due to brain structure.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
You DO get copies of all results including SPECT and nueropsych testing results.
I have my phone appointment next week.
I have family in that area, maybe I can combine trips? There is a lot to go thru before you even get to traveling.
I am psyched!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Has anyone been contacted for an appointment? I did the phone survey about 3 weeks ago.
Posts: 146 | From New Jersey | Registered: Jun 2005
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I had my phone interview on 1/24 and they received my questionnaires and some of my medical records on 2/13. I have not heard anything yet.
My guess is that they are waiting to get information from some number of patients before they start to select the ones which they want to speak with further, but I don't know that for a fact.
It could be that we just don't fit the criteria for this particular study.
Suzanne
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
phone interviewed on 2/23
sent all questionaires and pertinent test results, etc. via fax on 2/27
Havent heard back yet.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Hi! I'm brand new to this site. Glad it exists! I went through the process to enroll for this study, but in the end, one of my tests was equivical and therefore, I was not selected to participate. I was very upset for a while... it's so easy to fall into the trap of the hope that FINALLY the nightmare will be over. I was undiagnosed for more than 5 years, so the symtoms became severe and are chronic. Fortunately for me, someone from the study spoke to my doctor and suggested that I be given antibiotics when I needed them and I've managed to mostly keep symtoms at bay. And some advice - though I hate doing it, and sort of hate to say it - regular exercise helps... just whatever you can do - hey, for a long time, I considered going to the bathroom enough exercise for the day. Good luck to those who make it into the study! Maybe it WILL establish that long term treatment is successful and the insurance companies will listen. Yeah, I'm an optimist. :-)
Posts: 4 | From McLean, VA | Registered: Mar 2006
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posted
You may be thinking of the IV Rocephin study which Dr. Fallon completed last year.
I believe that this study will be looking at SPECT scans of the brain only in order to determine if there might be any diagnostic value to using them.
If I understand correctly, there will be no treatment or treatment recommendations involved in this study.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Anyone have an appointment yet?
Posts: 146 | From New Jersey | Registered: Jun 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
no and I tried to call amanda today but there was no answering machine. I am going to be in NYC all the way from CA on some specific dates in 2 weeks. I was hoping to get an appoint then if they accept me.
Anyone else?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I qualify for the study but would have to get another brain MRI on my own. ALso they cant see me when I am in NYC this coming week.
SO now I am not sure if I will be able to afford this. We'll see.
Anyone else?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
This is interesting to me, but I also don't have a positive WB. My son lives in NYC and it would be a good opportunity to combine this with a visit. He's also been admitted to a special program at Columbia beginning this summer, so we could even go up there together!
I'll check on it, but if they don't take me I'm sure other things will turn up.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
re: study there and lyme eval. I understand the key person has been on some sort of leave. phone machine was full for weeks and then was not working earlier this wk. it should get better as Dr. C returns. not sure why she was out.
good luck
-------------------- mom & co. Posts: 31 | From ny | Registered: Feb 2006
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posted
could someone please tell me if they are still recrluiting for this? I think i might be a good candidate since I have a classic case of untreated lyme with history of EM rash, CDC positive blot and positive MRI findings.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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The Lyme Spect study is still active and they are still recruiting, so if you are interested in participating or wish further information about the study, please send an email to the following address: [email protected] or call 212-543-6510.
Thanks,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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posted
I had a spect scan done at Columbia in 1998. For anyone trying to get your insurance companies to "accept" you as a lymie, you may want to consider doing this. The spect scan was the only test out of a dozen I went through that showed proof of lyme. This was the last effort I took before having a spinal tap. B/c of this spect scan, the spinal tap was not necessary.
Posts: 21 | From San Francisco, CA | Registered: Jan 2007
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bettyg
Unregistered
posted
SUSAN, thanks for sharing your experience/tip with us all!
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posted
Susan,if you read there site, it states a spect can cannot make a lyme diagnosis.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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