want to scream!

[eljomom]

Just heard back from the pandas specialist's office....after trying to reach this doctor for well over a week to follow up on the co-infection testing/repeat Lyme that THIS DOCTOR wanted to call about then decide which lab to use. Well, after bugging the front desk, they asked the doctor, who said to just go on with the ENT consult and then see how that goes first. Are you kidding me!?!?!? What, we can't run bloodwork ALSO----bloodwork that we will do regardless of the ENT consult??? I hate feeling like my hands are tied, but my hands are tied. We don't even have enough money for groceries right now without using AmEx. So I can't just call any other doctor or go out of state for a second opinion. Sorry, just so defeated.

[mama2alex]

I'm really sorry about this. I don't know who your doctor is, but this is ridiculous. Your child is very ill and he is dragging his feet.

 

What I would do is request the forms and kit from Igenex, mark the tests you want and send them or bring them to your doc to sign. Folks over on the Lyme board can help you with deciding which tests, if you're not sure. Be polite of course, but INSIST on him signing for the tests - it was his idea. If all he has to do is sign, you are making it a lot easier for him and expediting the whole thing. Once its signed, you can get the blood drawn at a lab and send it off yourself. I would also try to find a way to have results sent directly to you, since your doctor is so unresponsive by phone.

 

Just my two cents!

 

 

Just heard back from the pandas specialist's office....after trying to reach this doctor for well over a week to follow up on the co-infection testing/repeat Lyme that THIS DOCTOR wanted to call about then decide which lab to use. Well, after bugging the front desk, they asked the doctor, who said to just go on with the ENT consult and then see how that goes first. Are you kidding me!?!?!? What, we can't run bloodwork ALSO----bloodwork that we will do regardless of the ENT consult??? I hate feeling like my hands are tied, but my hands are tied. We don't even have enough money for groceries right now without using AmEx. So I can't just call any other doctor or go out of state for a second opinion. Sorry, just so defeated.

Edited August 19, 2011 by mama2alex

[philamom]

I would ask her if you could pursue the labs while waiting for the ent consult. I'm sorry for what you are going through...it's hard enough already! I am so fortunate to have a local DAN doctor (who accepts our insurance) to run tests for us, when needed.

[PowPow]

You have been given good advice, I think by the other posts. Get the labs (even if you have to drive up there to get the doc to sign them.) Go see ENT if you can, but who knows what that is worth, as strep had not been this huge issue and you could probably go see 10 different ENTs with 15 different opinions on what to do. If it is going to cost oyu a bunch- maybe do not bother-- or if your child can "wait" - maybe you should get a second opinion- and not spend any more funds at the place that you are not gettting responses from. I know you cannot afford it now, but it might be the best thing. If you call now, it might be awhile anyway until you can see someone else & by then, maybe you will have won the lottery

I wish I do something to help you, eljomom. This is rotten.

[kimballot]

Just heard back from the pandas specialist's office....after trying to reach this doctor for well over a week to follow up on the co-infection testing/repeat Lyme that THIS DOCTOR wanted to call about then decide which lab to use. Well, after bugging the front desk, they asked the doctor, who said to just go on with the ENT consult and then see how that goes first. Are you kidding me!?!?!? What, we can't run bloodwork ALSO----bloodwork that we will do regardless of the ENT consult??? I hate feeling like my hands are tied, but my hands are tied. We don't even have enough money for groceries right now without using AmEx. So I can't just call any other doctor or go out of state for a second opinion. Sorry, just so defeated.

 

 

Eljo - I am trying to understand what happened here. Have you seen the PANDAS doc in person yet? Also, if the PANDAS doc is recommending an ENT appointment first, perhaps s/he is suspecting that an ENT issue underlying the exacerbation is likely and perhaps s/he is trying to save you time and money. I am trying to understand when the PANDAS doc asked for the lyme/coinfection test. Did you already do the lyme/coinfection test and you are waiting for the results? Did you already see the PANDAS Doc?