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need PANDAS/LYME doc in B'klyn & Manhattan for young man


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I need your recommendations for a PANDAS/PITANDS/PANS & LYME literate doc for a young man (late 20's) who lives in Brooklyn, NY. He has eye tics ("twitches"), is somewhat obsessional/compulsive, and until recently, owned more than 30 pet parakeets all at one time, for many years, which birds may have transmitted 1 or more "bugs" to him (bacterial, etc.). The apartment he was in, (he's out of that one now) also had rats and various insects, including bedbugs, centipedes, and various little bugs he saw in the parakeets' food areas.

 

He is poor, has no car, is too sick to work, and gets food brought to him by his mom. He is able to travel by subway to Manhattan. He does have some kind of health insurance, and being poor, he needs to see a doctor who takes insurance.

 

The doctors he has seen so far, have not been able to fully diagnose him. I suspect Mycoplasma avium (from the birds), (he's being tested for this, via sputum samples being cultured) and maybe Lyme Disease (which can be transmitted by tiny ticks even from birds!). He has red marks (possible tiny bite marks) on both the front and back of him. He feels a crawling sensation at times on his skin. He worries about possible parasites.

 

A while back, he felt better just when on a "prev pack" (minus the acid blocker). But, he felt sicker after he was done with those antibiotics, so I suspect he still has some kind of infection or more than one infection.

 

Can anyone recommend a PANDAS & LYME literate doctor in BROOKLYN &/OR IN MANHATTAN, who can help to diagnose and treat this nice young man? His platelet count is somewhat below normal, and he lost some hair, has lost weight, and is motivated to get diagnosed and get better. He has been tested for AIDS (which can infect heterosexual patients too, which he is), and he's thankfully negative for AIDS.

 

Thanks in advance for any doctor recommendations.

 

Carol

970-531-5000

fsds@rkymtnhi.com

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You could try Dr. Najjar at NYU Langone. Do you mean he was tested for HIV? There is no "AIDS" test I don't believe? Was HIV thought to be an issue? Why is this young man living with 30 birds?? and in such a unhealthy environment?

Edited by LaurenK
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You could try Dr. Najjar at NYU Langone. Do you mean he was tested for HIV? There is no "AIDS" test I don't believe? Was HIV thought to be an issue? Why is this young man living with 30 birds?? and in such a unhealthy environment?

 

Thank you! I will call Dr. N. today. Yes, the young man (previously gainfully employed) was tested for HIV, and was negative. He was tested for HIV, because of his weight loss over the last couple of years, weakness, and I think that testing was a routine thing they test for when they don't know what's happening with a young man.

 

The birds were pets of his and his mother, since he was a teenager, when they started out with just 2 (a male & female parakeet). His mom was a single mom, originally coming from a European country, and she came from a somewhat dysfunctional family, and as a result, she has obsessional behavior, too (hoards clothing, easily is stressed, etc.).

 

Being a single mom years ago, she got what she could, for an apartment, and their place was not the best. All the birds were finally given away (recently), and the son moved out into another apartment that the mom owns, that is hopefully in better shape.

 

Sincerely,

 

Carol

Edited by concerned lady
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I need your recommendations for a PANDAS/PITANDS/PANS & LYME literate doc for a young man (late 20's) who lives in Brooklyn, NY. He has eye tics ("twitches"), is somewhat obsessional/compulsive, and until recently, owned more than 30 pet parakeets all at one time, for many years, which birds may have transmitted 1 or more "bugs" to him (bacterial, etc.). The apartment he was in, (he's out of that one now) also had rats and various insects, including bedbugs, centipedes, and various little bugs he saw in the parakeets' food areas.

 

He is poor, has no car, is too sick to work, and gets food brought to him by his mom. He is able to travel by subway to Manhattan. He does have some kind of health insurance, and being poor, he needs to see a doctor who takes insurance.

 

The doctors he has seen so far, have not been able to fully diagnose him. I suspect Mycoplasma avium (from the birds), (he's being tested for this, via sputum samples being cultured) and maybe Lyme Disease (which can be transmitted by tiny ticks even from birds!). He has red marks (possible tiny bite marks) on both the front and back of him. He feels a crawling sensation at times on his skin. He worries about possible parasites.

 

A while back, he felt better just when on a "prev pack" (minus the acid blocker). But, he felt sicker after he was done with those antibiotics, so I suspect he still has some kind of infection or more than one infection.

 

Can anyone recommend a PANDAS & LYME literate doctor in BROOKLYN &/OR IN MANHATTAN, who can help to diagnose and treat this nice young man? His platelet count is somewhat below normal, and he lost some hair, has lost weight, and is motivated to get diagnosed and get better. He has been tested for AIDS (which can infect heterosexual patients too, which he is), and he's thankfully negative for AIDS.

 

Thanks in advance for any doctor recommendations.

 

Carol

970-531-5000

fsds@rkymtnhi.com

Hi Carol<

 

Below is an message I got from a Mom who has a PANDAS kid. Hope this helps.

 

 

 

*

 

Hi Tiffani, You mentioned that you would like to know about doctors who might be willing to come to Mass to discus PANDAS. I spoke to Ruby's pediatrician Dr. Susan Schulman. She would like to do anything to help spread the word to other docs. You can reach her at susankschulmanmd@gmail.com

She is a very lovely and caring woman who has a very interesting story to tell about all the PANDAS kids she see's in her practice. She was interviewed for the Parents magazine article about PANDAS. You can tell her that you got her name from Ruby's mom.

Sherri

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I need your recommendations for a PANDAS/PITANDS/PANS & LYME literate doc for a young man (late 20's) who lives in Brooklyn, NY. He has eye tics ("twitches"), is somewhat obsessional/compulsive, and until recently, owned more than 30 pet parakeets all at one time, for many years, which birds may have transmitted 1 or more "bugs" to him (bacterial, etc.). The apartment he was in, (he's out of that one now) also had rats and various insects, including bedbugs, centipedes, and various little bugs he saw in the parakeets' food areas.

 

He is poor, has no car, is too sick to work, and gets food brought to him by his mom. He is able to travel by subway to Manhattan. He does have some kind of health insurance, and being poor, he needs to see a doctor who takes insurance.

 

The doctors he has seen so far, have not been able to fully diagnose him. I suspect Mycoplasma avium (from the birds), (he's being tested for this, via sputum samples being cultured) and maybe Lyme Disease (which can be transmitted by tiny ticks even from birds!). He has red marks (possible tiny bite marks) on both the front and back of him. He feels a crawling sensation at times on his skin. He worries about possible parasites.

 

A while back, he felt better just when on a "prev pack" (minus the acid blocker). But, he felt sicker after he was done with those antibiotics, so I suspect he still has some kind of infection or more than one infection.

 

Can anyone recommend a PANDAS & LYME literate doctor in BROOKLYN &/OR IN MANHATTAN, who can help to diagnose and treat this nice young man? His platelet count is somewhat below normal, and he lost some hair, has lost weight, and is motivated to get diagnosed and get better. He has been tested for HIV (which can infect heterosexual patients too, which he is), and he's thankfully negative for HIV.

 

Thanks in advance for any doctor recommendations.

 

Carol

970-531-5000

fsds@rkymtnhi.com

 

 

Hi Carol<

 

Below is an message I got from a Mom who has a PANDAS kid. Hope this helps.

 

 

*

 

Hi Tiffani, You mentioned that you would like to know about doctors who might be willing to come to Mass to discus PANDAS. I spoke to Ruby's pediatrician Dr. Susan Schulman. She would like to do anything to help spread the word to other docs. You can reach her at susankschulmanmd@gmail.com

She is a very lovely and caring woman who has a very interesting story to tell about all the PANDAS kids she see's in her practice. She was interviewed for the Parents magazine article about PANDAS. You can tell her that you got her name from Ruby's mom.

Sherri

 

Thank you, Tiffani for your messages (got the email one first)! I sent an email to Dr. Susan Schulman, and hope she has a recommendation for me. I haven't yet been able to get to Dr. Najjar at NYU Langone, as LaurenK suggested. (Dr. N's secretary is often away from the phone, so I'll have to call back & leave a message).

 

If the young man weren't poor, and had a car, and had someone to drive him since he's sick, I would have recommended he see Dr. Schulman. He is able to use the subway system.

 

Carol

(cell) 970-531-5000

fsds@rkymtnhi.com

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