This is topic I hear Dr. B. recommended neurologist Dr. Y. in NYC to his patients. Your experience? in forum Medical Questions at LymeNet Flash.


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Posted by canbravelyme (Member # 9785) on :
 
I received a message in my e-mail that the Dr. B. was recommending a neurologist Dr. Y. in NYC.

I'm considering going to see him, but I'm a patient of Dr. S. in CA, and I'm wondering whether I would be better off seeing Dr. S.'s neurologist.

Anyone see Dr. Y.? What were your thoughts?

I tried posting in, "Seeking a Doctor", but didn't get any respondents who had seen Dr. Y.

Best wishes,

[ 06. December 2007, 08:41 AM: Message edited by: canbravelyme ]
 
Posted by treepatrol (Member # 4117) on :
 
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=061066
Stick with your LLMD hes closer and a good one.
But its still up to you.
 
Posted by canbravelyme (Member # 9785) on :
 
Hi Tree,

I agree entirely with your "Too Many Cooks" post.

In this case, I'm not looking to switch horses, only that Dr. S. has suggested that I need a neurologist, because my neuro symptoms are so prevalent.

I heard that Dr. Y. is a specialist in autonomic function disorder, and I have mainly this.

It's a consult I'm looking for, with (hopefully) some very specific targeting of drugs for symptom management, until the Lyme subsides.

Best wishes,
 
Posted by feelfit (Member # 12770) on :
 
I think that Bea Seiberts Husband had an appoinment with him this week. I am looking for her post as to how it went too.
 
Posted by CaliforniaLyme (Member # 7136) on :
 
Go meet him this Saturday and find out what he is like!!! He & Doc B are co-moderating the Greater NY Support Group- you lucky people!!!The following is is from the web page

http://www.lymenyc.org/index.html

Doc Y has his PHONE NUMBER listed on site for any Lyme patient to call for more info!!!

So he's a God, basically*)!)!! A
Neurologist listing his PHONE NUMBER!!!
*************************************************
The next Meeting of

The Greater New York
Lyme Neuroborreliosis Support Group

is on
December 8, 2007
12:30 - 2:00 pm

Moderated by:
Dr. Joseph Burrascano,
Founding board member of the
International Lyme
and Associated Diseases Society.
and
Dr. David S. Younger,
Chief, Neuromuscular Diseases,
NYU medical Center.


The Greater New York
Lyme Neuroborreliosis Support Group
Meets the 2nd Sturday every other month
At 12:30 pm - 2:00 pm
2007: 12/8
2008: 2/9, 4/12, and 6/14

at New York University Medical Center
Rusk Institute, Horizon House - Ground Fl.
400 E.34th Street
New York, NY 10016

Lunch will be served.

Rusk Institute is handicapped-accessible with parking near the entrance on 34th St.
 
Posted by canbravelyme (Member # 9785) on :
 
Here is another thread discussing Doc Y:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=060570

I have an appt. next week; I'll let you all know how it goes.

Maybe I can move my flight and make the meeting...

xxoo
 
Posted by achey (Member # 6284) on :
 
I have been to see Dr. Y. He's a wonderful man and very hard working and helpful.

Dr. K, llmd neuro sent me to Dr. K after my insurance co denied me IVIG for 18 months and I was dying.

Dr. Y did an EMG, agreed with Dr. K's dx and I finally got IVIG.

Been infusing i day/ week since the end of May and also using colloidal silver instead of abx, and contiunously improving.
 
Posted by seibertneurolyme (Member # 6416) on :
 
If you have $6000 - $10,000 to pay for testing out of pocket (does not accept insurance) then good luck.

Otherwise, don't waste the time and energy.

One of the biggest disappointments hubby has had to date. Hubby is still in the hospital at Lenox Hill in Manhattan. Can't go into too many details as Dr Y is the admitting doc.

Let's just say that we have more confidence in the psych doc on the case than in the neurologist.

A friendly rmeminder that many docs have a hidden agenda and there are many wolves in sheep's clothing.

If you believe IV IgG is a cure-all and can pay for the testing more power to you. The inside scoop is that the neuro wrote some of the insurance company guidelines for use of IV IgG so he should know how to get the treatment approved.

Bea Seibert
 
Posted by ArtistDi (Member # 2297) on :
 
I have seen Dr. Y in NYC. Yes, very expensive,
and I only got there because I wrote a medical
arts grant. Based on need and my artwork's
technical strength, I was awarded the grant.

He ran many,many tests. I did qualify for the
IVIG, but he is difficult to contact when you
are out of state. My pcp was frustrated because
he didn't know how to run the IVIG.

Luckily, there was a new hematologist/oncologist
at our local hospital that agreed to take my
case. She runs the gamma and she is covered by
my insurance. (One more thing, Dr. Y has a very
aggressive dosage, and if one has a sensitive body, it will be excruciating.) My hematologist
and I figured out the best way to dose based
upon my particular body.

The other thing with Dr. Y is that you have to
retest after so many doses, so another $7,000 up
front. I know he is doing research, but I couldn't afford to do that. That being said,
I am truly grateful for getting the IVIG. He
is a compassionate doctor, just busy, and therefore, difficult communication.

If you can get the IVIG locally, I would try for
it at home.

[ 07. February 2008, 08:33 AM: Message edited by: ArtistDi ]
 
Posted by lou (Member # 81) on :
 
So basically the only treatment he offers, if you qualify is IVIG? It does not help all lymies, but does help some.
 
Posted by ArtistDi (Member # 2297) on :
 
I don't know if he offers more than IVIG. I think lymies with autoimmune issues do well with
it. I am one of those, and therefore, have responded. I think those with the biggest neuro
issues might benefit.

But, I am merely a patient, not a doctor.
 
Posted by Lynn Frie (Member # 15351) on :
 
I'm not sure how anyone could think that Dr. Y is compassionate. He has been completely disrespectful to me and my father. He answers phone calls while I am in the office, but I can never reach him by phone...hmmm. And these are not emergency calls. He has lied to patients, he charges way too much for testing, and he uses stupid analogies that don't make any sense. My insurance company and I have spent over $60,000 on IVIG, seen zero results so far. He comes off as a jerk to me to be quite honest. He is also a one-trick pony. He thinks IVIG will cure anything. Then when it doesnt, he is rich and we are still suffering. Oh well, too bad for us.
 
Posted by laurie sm (Member # 14584) on :
 
I have to agree with Lynnfrye.

I just completed 15 ivigs through dr. Y in the course of 3 months.

I had a bad impression of him right from the beginning but he was pushing the IVIG as a cure all for my neuropathy.

He is very short and curt when you do reach him on the phone.

He is full of himself and I am not giving him anymore of my money.

15 IVIGS were not fun to go through. I should have been attacking my Lyme more aggressively during that time.
 
Posted by chamade (Member # 11472) on :
 
IVIG is not a cure all, but the last hope for a lot of people with really bad neuro symptoms, especially neuropathy - since this is one of the symptoms that often doesn't resolve with abx. So I don't see what is wrong with him pushing IVIG, since there really isn't anything else out there except steroids.
 
Posted by Lynn Frie (Member # 15351) on :
 
the problem is that he is a jerk. He talks to me like I'm a child who has no clue. He answers random phone calls when my father and I are in his office. It took him a month and a half to sign his name on my SS papers, after he twice told me he would have to charge me for doing just that. He has put my treatment on hold because he has a gripe with my nursing company over a stupid signature. Now I cant get my treatment at all because my insurance only uses that nursing company. He thinks he is a god, but really he's a one-trick pony hack. Not to mention other horror stories Ive heard about this reckless incompetent fool.
 
Posted by Parisa (Member # 10526) on :
 
I can't speak to the Dr. Y issue but I will say that IVIG has really helped my husband. He has an autoimmune presentation and had severe muscle pain and wasting. Dr. Y isn't the only doctor who can get IVIG authorized by insurance.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
It's unfortunate to see another LLMD with such a negative record. I had him on my list, and still do, but it's filled with negative complaints.

I have a friend who sees him, she was singing his praises the last time I heard from her, but then again she was also dying from countless infections/coinfections and Lyme, weighed 82lbs and has lost complete function of her entire G.I. system and is allergic to every single antibiotic.

At any rate, if anyone has positive reports, please PM me. I try to keep it balanced! Hopefully someone has something nice to say.
 
Posted by stella marie (Member # 7216) on :
 
I had a doc who sugessted IVIG. But I've always been skeptical how the blood could filter out lyme bacteria, co-infections, and other critters that couldn't be found it in my own blood work in the begining.
 
Posted by bettyg (Member # 6147) on :
 
..
BUGG, please clean out your PM box; it's full!!
***********************************************

thanks for the compliments.


question: did your reply mean...I apologize and will break up my solid block text

OR did it mean, sorry, no, i won't break it UP ?? thx my attorney friend! [group hug]
 


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