Spoke to Dr. Nijjar's Secretary

[3boysmom]

Pych or neuro issues do not only come from chemical imbalances in the brain. PANDAS is an autoimmune that effects part of the brain. One of the leading PANDAS doctors is a neurologist. Inflammation of this part of the brain causes all types of problems.

[julie_2girls]

I like SFMom recommendation of trying to see DR Horowitz...if we lived on that side of the country we would have gone that route...he talks about multi-systemic infectious disease syndrome - which many of our kids have: infections, autoimmune, mitochondria issues, neurological, endocrine, etc...he is comprehensive in his approach. Never been to him but he is one of the best!

[JoyBop]

I don't think that anyone is debating what type of disorder PANDAS is at all. We are all fully aware that its an autoimmune disorder that can affect many aspects of an individuals health, but in particular, the brain. The point is that the doctors that have clinical interest in PANDAS span the board of specialties and you can't tell a person which doctor is right for them depending on their symptoms and the residency training a doctor received. We are seeing the following specialists that claim to have an interest in PANDAS patients; family practice, neurologist, psychologist, and infectious disease and we are just at the beginning if our battle. Don't give up and leave no stone unturned until you find the right one for your child, regardless if their specialty.

[Guest]

@joybop Respectively, it's not that he doesn't want to see anyone's child, it's that he was in a national best seller book and is renowned here in American and his home country, thus, he has hundreds of thousands of desperate patients trying to get in to see him and he can't possibly see everyone in the world at once...... He's come up with a process and it's simple:

Get referred, send in referral with records from 2012-present, and wait for the phone call to be put on waiting list. I hear it's a long waiting list and I'm sure everyone on it is desperate and sick. My psychiatrist has a similar process. The good things about these doctors like N, they give every patient loads of time during appt's which is highly respectable and rare. He just has the process b/c of the popularity of the book I'm sure and doing rounds at the hospital as well, but I don't think it says anything negative about him, quite the opposite.

 

With that said, my 2 cents is, Dr. T never gets back to patients, at least not me. He's helped people here, that's great. But I feel like he bailed on me after 2 phone appt's. Just getting the initial labwork was a herculean task: my doctors had to call, I had to call, the lab workers had to call CONSTANTLY to get anything done. I haven't heard from him in 3 months after diagnosing me with something very serious and being put on valtrex. Surely this is no way to treat a very sick and disabled patient.

 

The latter is mentioned not to bash but to inform anyone who is needing help asap with full and undivided attention and accessibility, he may not be the best to contact.

 

To chime in on auto-imunity, it can be triggered by infections be it viral or bacterial. Many M.E./CFS patients initially get a viral trigger then the cascade of CNS and immune system damage begins. Even when the initial infection is taken care of, the disease continue to progress.........