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Author Topic: Scared in NYC... Doctor Needed  (Read 4767 times)

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Offline JamesFromSI

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  • Posts: 15
Scared in NYC... Doctor Needed
« on: November 01, 2011, 10:47:57 AM »
I am newly diagnosed and a bit overwhelmed and scared.

I am attempting to find a good HIV doctor but so far no luck.  Either don't accept my insurance (Aetna) or not accepting new patients.

I have tried these for a few:
  Howard Grossman (no Aetna)
  Tony Urbina (no new patients)

Please help with referrals
-James
Infected early 2011; Tested positive 10/25/11; Confirmed 10/31/11 (Halloween)
10/26/11: VL101,900
11/8/11: VL79,000  Cd4 822
11/20/11: Started Atripla
11/29/11: Atripla Rash... Benadryl
12/4/11: Rash Gone :-)
12/28/11: VL 143
2/9/2012: Cd4 908 VL 34!!! (Just changed undetectable to below 20 :-| )

Offline Miss Philicia

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Re: Scared in NYC... Doctor Needed
« Reply #1 on: November 01, 2011, 10:59:51 AM »
Try starting at something like this which is a large HIV clinic that accepts lots of types of insurance and also has a sliding scale payment system: http://www.centerforcare.org/

That will at least get you on treatment, testing etc. then if you decide you still prefer a smaller private practice you can take six months/year to relax and locate one. I believe their listed W. 17th St Clinic location is brand new and the largest HIV center in the US right now.

Personally I've found a clinic setting better than a sole practitioner because it's more of a "one stop shopping" experience where they have case managers on site to hook you up with any possible public benefits, etc. as well as thinks like dental care, support programs, integrated pharmacy, mental health...
"Iíve slept with enough men to know that Iím not gay"

Offline JamesFromSI

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  • Posts: 15
Re: Scared in NYC... Doctor Needed
« Reply #2 on: November 01, 2011, 11:07:32 AM »
Dr Urbina is in that clinic and really wanted to see him but no new patients. 

I will see what other doctors are available there.

Thank you very much!
Infected early 2011; Tested positive 10/25/11; Confirmed 10/31/11 (Halloween)
10/26/11: VL101,900
11/8/11: VL79,000  Cd4 822
11/20/11: Started Atripla
11/29/11: Atripla Rash... Benadryl
12/4/11: Rash Gone :-)
12/28/11: VL 143
2/9/2012: Cd4 908 VL 34!!! (Just changed undetectable to below 20 :-| )

Offline jacken

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  • Posts: 72
Re: Scared in NYC... Doctor Needed
« Reply #3 on: November 02, 2011, 01:18:01 AM »
You may want to try Callen Lorde

http://www.callen-lorde.org/

Offline edfu

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Re: Scared in NYC... Doctor Needed
« Reply #4 on: November 02, 2011, 05:03:48 AM »
I don't know if they accept Aetna or see new patients, but try:

William Shay (on W. 14th St.)

Frank Spinelli   (W. 19th St.)
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline JamesFromSI

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  • Posts: 15
Re: Scared in NYC... Doctor Needed
« Reply #5 on: November 02, 2011, 10:54:05 AM »
Thanks soooo much!

Maria from http://www.latinoaids.org/ has been incredibly helpful and is meeting me at the Center for Comprehensive Care this afternoon at 3pm.

I have been to Callen Lorde and they are great too.... I am trying to get into their HIV support group on Thursday nights.

In case others will benefit from my research:
   Dr Frank Spinelli - http://frankspinellimd.com (no aetna)
   Dr Howard Grossman - http://www.alphabettercare.com (no aetna)

Thanks!
-James  :)
Infected early 2011; Tested positive 10/25/11; Confirmed 10/31/11 (Halloween)
10/26/11: VL101,900
11/8/11: VL79,000  Cd4 822
11/20/11: Started Atripla
11/29/11: Atripla Rash... Benadryl
12/4/11: Rash Gone :-)
12/28/11: VL 143
2/9/2012: Cd4 908 VL 34!!! (Just changed undetectable to below 20 :-| )

Offline JamesFromSI

  • Member
  • Posts: 15
Re: Scared in NYC... Doctor Needed
« Reply #6 on: November 09, 2011, 10:43:17 PM »
Update.... The Center for comprehensive care is absolutely fantastic!  Thanks Miss Philicia.

And... I have a fantastic doctor!  Met with him yesterday and have a followup next Thursday after all the test results are back.

Thanks for all your help!

-James
Infected early 2011; Tested positive 10/25/11; Confirmed 10/31/11 (Halloween)
10/26/11: VL101,900
11/8/11: VL79,000  Cd4 822
11/20/11: Started Atripla
11/29/11: Atripla Rash... Benadryl
12/4/11: Rash Gone :-)
12/28/11: VL 143
2/9/2012: Cd4 908 VL 34!!! (Just changed undetectable to below 20 :-| )

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Scared in NYC... Doctor Needed
« Reply #7 on: November 14, 2011, 12:51:14 PM »
Update.... The Center for comprehensive care is absolutely fantastic!  Thanks Miss Philicia.

Glad that worked out for you, James -- this new center should be well funded from what I've read, so I'm sure you will be well taken care of.

As far as support groups go, when I lived in NYC (for 15 years) I preferred going to Friends in Deed on Broadway in Soho. Not sure how to explain it, but I simply found the atmosphere there very relaxing, and the moderators are all really good. And if you have any afternoons free they used to serve a nice simple vegetarian lunch after the meeting, since attendance is small during the day. However, if you select to try this place out, you should go to one of the "Big Groups" in the evening as they're more of the introductory type of group.

http://www.friendsindeed.org/

(click on the "Big Group" tab in the upper bar for weekly schedule) Cynthia O'Neal still runs the place and she's very fierce. Also check out the "Other Services" section and you'll see that they also offer one-on-one crisis counseling, yoga classes, and other workshops. Friends in Deed is good because they're not so large that you get lost in the shuffle, but they're large enough to offer a variety of services. You know how you can get that "lost" feeling in NYC organizations due to size, or weird management and what not. I really can't recommend this place enough.
« Last Edit: November 14, 2011, 12:54:38 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Inchlingblue

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Re: Scared in NYC... Doctor Needed
« Reply #8 on: November 15, 2011, 08:45:03 PM »
It's great you found a doctor you like.

NYC has no shortage of good HIV docs.

Dr. Charles Paolino is excellent, as is Dr. John Dellosso.

Offline Cruzer625

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  • Posts: 9
Re: Scared in NYC... Doctor Needed
« Reply #9 on: November 23, 2011, 08:16:50 PM »
I could not agree more with the Center for Comprehensive Care recommendation.  I was a bit skeptical at first because of the fact that it's a clinic, but Dr. Urbina and his staff won me over from day one.

-Michael

Offline Miss Philicia

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Re: Scared in NYC... Doctor Needed
« Reply #10 on: November 24, 2011, 12:28:20 AM »
I'm glad to read such great things about CCCA so quickly considering it's just opened. I stumbled on this article in the NY Daily News about the place.
"Iíve slept with enough men to know that Iím not gay"

Offline Cruzer625

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  • Posts: 9
Re: Scared in NYC... Doctor Needed
« Reply #11 on: November 24, 2011, 02:49:01 AM »
The only thing that's new is the physical space.  The entire staff relocated from the St. Vincent's location that was across the street from the now closed ER.  The excellent care remains the same.

Offline JamesFromSI

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  • Posts: 15
Re: Scared in NYC... Doctor Needed
« Reply #12 on: November 30, 2011, 11:17:37 AM »
Update:
 
I was on holiday and started Atripla on Nov 20th even though my CD4 is 890... I am of the modset of not to let something fester in my system and wait for symptoms or damage that may be irreversible.

Took my 10th dose last night but yesterday at the gym my trainer noticed a rash on my shoulder... I know sustiva is known to produce a rash on 27% of ppl... I took Benadryl as suggested on some google searches... waiting for my Dr to call me back.

-James
Infected early 2011; Tested positive 10/25/11; Confirmed 10/31/11 (Halloween)
10/26/11: VL101,900
11/8/11: VL79,000  Cd4 822
11/20/11: Started Atripla
11/29/11: Atripla Rash... Benadryl
12/4/11: Rash Gone :-)
12/28/11: VL 143
2/9/2012: Cd4 908 VL 34!!! (Just changed undetectable to below 20 :-| )

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Scared in NYC... Doctor Needed
« Reply #13 on: November 30, 2011, 02:25:40 PM »
The only thing that's new is the physical space.  The entire staff relocated from the St. Vincent's location that was across the street from the now closed ER.  The excellent care remains the same.

I was under the impression that the "not shuffling the patient around from room to room" was the "new" concept this clinic was going for, and was not previously implemented at St. Vincent's.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Scared in NYC... Doctor Needed
« Reply #14 on: November 30, 2011, 02:27:08 PM »
Update:
 
I was on holiday and started Atripla on Nov 20th even though my CD4 is 890... I am of the modset of not to let something fester in my system and wait for symptoms or damage that may be irreversible.

Took my 10th dose last night but yesterday at the gym my trainer noticed a rash on my shoulder... I know sustiva is known to produce a rash on 27% of ppl... I took Benadryl as suggested on some google searches... waiting for my Dr to call me back.

-James

Yes, you can get a rash. It all depends on the severity of the rash as to whether or not you can continue on the medication, IIRC. It's been over a decade since I was on the Sustiva component of Atripla.
"Iíve slept with enough men to know that Iím not gay"

Offline Cruzer625

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  • Posts: 9
Re: Scared in NYC... Doctor Needed
« Reply #15 on: November 30, 2011, 02:55:53 PM »
I was under the impression that the "not shuffling the patient around from room to room" was the "new" concept this clinic was going for, and was not previously implemented at St. Vincent's.

Oh, they did change that.  You get placed into an exam room and everyone comes to you.

Offline JamesFromSI

  • Member
  • Posts: 15
Re: Scared in NYC... Doctor Needed
« Reply #16 on: December 15, 2011, 03:10:25 PM »
Sorry I have not been on... work has been crazy.  New boss firing ppl without consulting me and stress level through the roof.

The rash went away on its own within a few days and I have now been on Atripla for almost a month and knock on wood have not had any noticeable side effects.

I go back next Monday and will have my first blood tests since starting Atripla.  I am not expecting much after a month but would be great if I got some good news.  :D

I can attest that the CCC is awesome... and they come to you and take great care of you.
Infected early 2011; Tested positive 10/25/11; Confirmed 10/31/11 (Halloween)
10/26/11: VL101,900
11/8/11: VL79,000  Cd4 822
11/20/11: Started Atripla
11/29/11: Atripla Rash... Benadryl
12/4/11: Rash Gone :-)
12/28/11: VL 143
2/9/2012: Cd4 908 VL 34!!! (Just changed undetectable to below 20 :-| )

Offline NY2011

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  • Posts: 139
Re: Scared in NYC... Doctor Needed
« Reply #17 on: January 15, 2012, 02:21:42 PM »
Hey James,

Looks like we have a few things in common.  A very miserable Halloween this year for both of us, it seems.  If I could offer any advice, it would be to find a private practice HIV specialist that accepts Aetna.  Check out Dr. Haber in NYC. Be sure to ask for a lipid panel to monitor your cholesterol and keep n eye on your liver enzymes (AST & ALT). Don't just focus on the Cd4 and VL.  Also, see if your comverage allows for a yearly DEXA scan, to make sure that Atripla isn't affecting bone density.  These are all important things to consider. 
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)

Offline Andy Velez

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  • Member
  • Posts: 23,901
Re: Scared in NYC... Doctor Needed
« Reply #18 on: January 16, 2012, 09:29:44 AM »
James, you've gotten some good advice here. I just want to add that you aren't going to suddenly fall through some black hole. You're getting medical care, your numbers are being monitored and gradually you are going to learn everything you need to stay healthy. So don't feel like you have to rush and make hurried decisions.

And of course you are always welcome to come here and discuss anything that's on your mind. As you have already found, there is a wealth of experience and knowledge available for you here.

Cheers.
Andy Velez

Offline JamesFromSI

  • Member
  • Posts: 15
Re: Scared in NYC... Doctor Needed
« Reply #19 on: January 20, 2012, 11:26:15 AM »
Thanks to NY2011... We are similar and the I am doing great at the Center for Comprehensive Care!

I had my last Blood test on 12/28 and I went from almost 80,000 to 143! 

My doctor was very pleased and told me if I continue in this manner I will be undetectable faster then any other patient of his.

Andy... I appreciate it... everyone here has been so wonderful to me... I hope to have some more free time so I can "give back" some and help others.

-James
Infected early 2011; Tested positive 10/25/11; Confirmed 10/31/11 (Halloween)
10/26/11: VL101,900
11/8/11: VL79,000  Cd4 822
11/20/11: Started Atripla
11/29/11: Atripla Rash... Benadryl
12/4/11: Rash Gone :-)
12/28/11: VL 143
2/9/2012: Cd4 908 VL 34!!! (Just changed undetectable to below 20 :-| )

Offline Pozzy1

  • Member
  • Posts: 10
Re: Scared in NYC... Doctor Needed
« Reply #20 on: January 29, 2012, 06:15:59 PM »
Here is the number to the clinic that I see here in Southampton NY, give them a call and ask them who they might recommend in the city.  631 287 5990

Hope thie helps.

Offline NY2011

  • Member
  • Posts: 139
Re: Scared in NYC... Doctor Needed
« Reply #21 on: February 13, 2012, 12:17:55 AM »
James, I researched the Center for Comprehensive Care, and based on the website and feedback, it looks like a fantastic and supportive place.  We are very fortunate to have a place that seems to be dedicated to providing quality service.  I noticed that they also offer massage therapy and accupuncture.  I hope that things continue to go well for you.  I'm currently working with a dedicated internist/ specialist in private practice, but I will certainly keep this place in mind. 
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)

 


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