And willing to post? Someone else here, perhaps Andrew, mentioned that they had send blood to VIPdx and was waiting. They mentioned something to the effect that it was working on their mind, and they were having an internal dialog about it.
Being a stoic, I did not relate to that share right away. But sending in that blood changes things, even if you are waiting for a kit, ect. I do find that I am now gradually reflecting on my experiences when I first became ill, and pondering the significance of whatever test result will be the case. I am not hoping for one result or the other like some here might. If the result is negative, and I have Ideopathic Reeves Disease, I will not be upset, but I won't run out and get CBT and/or GET either.
I requested a kit a couple of days ago and they told me the waiting list is about 4 weeks long now. They also said that before they ship it out they will contact me to make sure I am still interested.
I believe many of us have been going over what this illness has cost us since the WPI announcement. It's a very exiciting and scary period.
Hang in there,
Thanks for the update Maxine. I ordered my test kit last week and they told me it would be a 6 week wait before they will send it out. I should have called sooner, but I was waiting to be diagnosed with CFS. The day after Dr. Levine gave me the dx, I called. Now I am getting really impatient. I hate to wait.
There is some chance, though, that our blood got put into a research pool and that I may never get specific results. WPI has a blood bank using blood from my doctor's office, though I've been told that ours came later.
I wonder if it is any coincidence, but so far, 100% of the folks responding to this thread who have submitted blood and are waiting for results from VIPdx are patients of Gordon Medical Group. Including myself, although I am treated for CFS/ME/XAND by an unrelated M.D.
Maxine, I spent a long time on the phone with medicare trying to discover this. After being transferred from one person to another for a while and waiting a long time, someone finally came on the line and told me that medicare never, ever says ahead of time what will be covered and what will not. She said you have to have the test and bill medicare. Then, when they receive the bill, they will decide if your test is "medically necessary". If they decide it is, they pay. If they decide it is not, they do not pay. Note: I am referring to original medicare. I do not know what medicare advantage plans do.
I'm sure you would have a good reason for doing that, but I don't understand...
And this lack of doctor support leads me to my biggest anxiety about this. How and who would treat it? Are doctors going to wait until there is an established protocol?
I know how disappointed you must have felt after your doctor's visit. Well, maybe I do -- can never say for sure that I know how anyone else feels.... Marylib