Who pays out of pocket?

[JoyBop]

I'm so bummed. Our insurance co just rejected out request to see Dr. T. based on our local pedi neuro that told them an in network doc should suffice. Nice! Coming from a guy who told my PCP that he was waiting to see how he responds to abx before giving us the office notes.

 

So who pays put of pocket for PANDAS docs and is it worth it? How often do you gave to travel to see them? Do you recommend it if our PCP us willing to try anything for us but has no clue on how to treat.

[beeskneesmommy]

We pay OOP for IVig and get reimbursed 60% for office visits, although I have to file usually. I think it is disgusting that the Ped. did this - he basically just set up a situation that gives your insurance justification to continue to deny under the premise of "Unnecessary treatment". I have unfortunately been there with IVig - was filed incorrectly 2 x and gave Cigna the opp. to deny payment for years to come. I am disgusted with these docs/office staff who are flagrantly irresponsible in this regard. Now, FYI: I think that some of the best OOP money spent has been my phone consults with Bouboulis. Usually they are 15 mins. if I have my notes and ducks in a row. I schedule 6 months in advance, about 4-6 weeks apart. It keeps us connected and gives me an opp. to check in and get help on a regular basis. Cost is 125.00/15 mins. Well worth it. You must go to see him in person to become an established patient 1st, and I try to make the trip about 1 x yr. Otherwise, a lot can be done by phone re: testing and meds. He is in-network with many insurance companies and at this time they file for you, so this may be a good option. We see another doc for IVig that is closer to home. It was this office that recently botched things up for us, but, well, we are still getting what we need. Just a lot poorer for it! Hope that helps, Kath

Edited May 25, 2013 by Beeskneesmommy

[Mayzoo]

I pay OOP for our PANDAS immunologist. We pay OOP and supposedly we will get reimbursed 60%. I have filed but have not been reimbursed or denied yet. We have had only two apps, but so far, we will continue to see him. He ordered a lot of tests we needed and he seems to get PANDAS. He is willing to treat with long term abx or IVIG, whichever we feel is best for kiddo.

[Teri]

So far we have paid OOP fo Dr.J -$900, Dr.Elia - $700+, and IGenex labs-$900+. Our PANDAS Dr. Is covered by insurance thus far.

 

We had some reimbursement for the IGenex labs . If we need to go the IVig route - praying we can it covered if needed. Otherwise we can't afford it!

[Hopeny]

I've spent tens of thousands. It's definitely worth it IMO. I look at it like concierge medical care. I get 60% of the amount our insurance co deems reasonable after deductible. We don't go on vacation much though

[JoyBop]

That's a great way to look at it! I will appeal out insurance companies decision but doubt it will work. I have to see what it would cost to switch to a PPO plan. I know I would get coverage with that over the HMO we have now. To think we paid $23000 per year not including our high deductible' just makes me mad!'

[rowingmom]

We pay out of pocket for our LLMD visits, supplements, blood tests and abx. Being Canadian we have no insurance in the US. We do not see a PANDAS Dr, but treatment for lyme/bartonella has resolved DD11's PANS symptoms. We could never afford IVIG in a US hospital, and it would not be offered to us in Canada. We pay $1500/month for treatment, but it has been SO TOTALLY worth the price. We see our LLMD once a month. We never go on vacation. I saw the new Star Trek movie tonight though!