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concerned lady

?PANDAS-like illness in 33 y.o. man, Ft. Myers, FL

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I was contacted by a young man, 33 years old, in Ft. Myers, Florida, over the weekend. He had been told 3 years ago, that he had VCD (Vocal Cord Dysfunction), which is basically intermittent laryngospasms.

 

While asking him many questions, he said that he had had A SEVERE STREP THROAT INFECTION, about 5 years ago, with a re-occurance of the severe strep throat infection.

 

This made me suspect he may have PANDAS or a PANDAS-like illness.

 

He has several more health problems, and needs a really good PANDAS-knowledgable doctor, as close to Ft. Myers as possible, who can be a "team leader" in helping him to sort through all his health issues.

 

When born, he had excess material of some kind, in his inner ear (right ear), and had to have 2 operations later on, to remove this material (at ages 8 & 19), and the operations left him with a vertigo-like condition causing him to see things moving when things are not moving, and causing the ground to sometimes appear to move in waves (when there's no earthquake happening). He said this problem was a "place & space" problem.

 

He told me that his eyes were trying to compensate for his ear problems.

 

He has visual migraines.

 

He also has some kind of NECK PROBLEM(S), THAT INTERFERE WITH HIM FALLING ASLEEP.

 

He used to be a professional drummer and singer, and like some other professional entertainers, abused alcohol (not any more), didn't get enough sleep, and didn't eat well.

 

He is trying to do better (eats better), but is almost incapacitated by the "vertigo"-like problems (inner ear problems), and may have a SLEEP DISORDER too.

 

From sleep deprivation, he has "hallucinations", anxiety, stress, etc.

 

He falls, and has to be helped to stand up again.

 

He also may have accidentally caused some nerve damage, by taking too much Vitamin B 6, until a year ago (not taking it anymore).

 

This is a desperate patient, who said he is almost at the breaking point, who needs a good doctor to act as a team leader, to address all his health problems, and who can find specialists to help him.

 

He was told (age 14), that he had a dysfunctional gall bladder along with a "frayed diaphragm".

 

He was supposed to be getting thyroid gland testing yesterday, prescribed by a neurologist.

 

I suspect he has some Obsessive Compulsive Disorder (OCD) symptoms, but it's hard to tell, because of his multi-factorial ailments plus sleep deprivation symptoms.

 

I recommended also avoiding gluten and milk proteins, which in "gluten-sensitive" & milk protein-sensitive people, can make PANDAS symptoms worse.

 

WHO ARE DOCTORS WHO TREAT ADULTS, WHO MAY HAVE PANDAS-LIKE ILLNESSES, AS CLOSE TO FT. MYERS, FLORIDA, AS POSSIBLE?

 

Thanks in advance.

Carol (concerned lady)

cell: 970-531-5000

fsds@rkymtnhi.com

Edited by concerned lady

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Thank you for replying.

 

I'm hoping some Floridians on this forum can recommend some good doctors' names & phone numbers that I can share with this unfortunate and desperate patient!

 

Carol (concerned lady)in Colorado

cell: 970-531-5000

fsds@rkymtnhi.com

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Dr Tanya Murphy is a PANDAS expert at the Univ of S. Florida in Tampa

I believe she is still only seeing pediatric patients, but perhaps her office can suggest someone?

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Dear Family of 5,

 

Thank you for your reply and suggestion.

 

----------------------------

 

Dear Chemar,

 

Thank you for your advice. I did call Dr. Murphy's office earlier on Tuesday, and the secretary checked with Dr. Murphy, and said that she (Tanya Murphy) only treats patients up to 18 years old, and that Dr. Murphy doesn't know any docs who treat adults.

 

The secretary said that Dr. Murphy recommended that "the patient" could contact the Infectious Disease Department at the Univerisity of South Florida, at 813-972-2000, to see if strep etc. are problems for the patient. I emailed this advice to the patient.

 

Sincerely,

Carol (concerned lady)

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