I have two extra XMRV tests

[misskoji]

Hi all. Not sure if this is ok to post here. I hope so. If not, my apologies.

I initally ordered two extra tests with my test from VIPDx. I was going to have all three in my household tested. After learning of the cost and a possible battle with my other insurance I decided to wait for the standardized tests to become available for the other two in the household.

Perhaps someone here would like these. I know there is getting to be quite a long wait list at the lab before they ship more out. The kits have been stored properly, not opened and I have the accompanied literature with them.

I'm going to be tested in just a few hours myself and have been up all night thinking about it.

Please send me a message if you are interested.
Here's to hoping better days for all of us.

ETA One test is spoken for and I forgot to mention that the kit is the combined PCR and Virus tests.

 

[Nina]

Hi Misskoji,

I cannot use the tests but wanted to wish you all the best for your appointment. I hope the result will be the beginning of a road to help for you.

Nina

 

[_Kim_]

misskoji,

From VIPdx:

We are accepting XAND tests on Tuesdays and Fridays only due to the incubation period required for proper analysis. Therefore, you must have your blood drawn on Monday or Thursday and ship immediately back to us by priority overnight FedEx for receipt by us on Tuesday or Friday.

Don't get your blood drawn today - it's Tuesday

 

[misskoji]

Nina

Thank you so much!

 

[misskoji]

Lol

OMG Kim, thank you for telling me! I'm blushing, I was thinking it was Monday today. I don't even know if I can blame this one on the fog today.

Well I still need to bring the literature in today to this doctor, I'm sure he's unaware of XMRV. Then I'll schedule the test for Thursday I suppose.

I resent even having to see him. He subscribes to psych theory of the disease and always notes me "presenting with depression symptoms" But I was assured by his office he will cooperate with the testing.

 

[_Kim_]

OMG Kim, thank you for telling me! I'm blushing, I was thinking it was Monday today. I don't even know if I can blame this one on the fog today.

Glad I caught you before you went and got blood drawn, only later to learn that you'd have to redo it, but only after you'd shipped out the extra test kits. Glad to have you on board misskoji. Cort has posted a sticky for us to report test results. I hope you'll consider doing so.

Good luck at your doctor's visit. Let us know how he handled your XMRV testing protocol.

~Kim

 

[Kati]

I resent even having to see him. He subscribes to psych theory of the disease and always notes me "presenting with depression symptoms" But I was assured by his office he will cooperate with the testing.

Sounds to me good grounds for lawsuit for misdiagnosis... Do you get antidepressants with that?

 

[Aftermath]

Lawsuit Talk

Stop with the lawsuit talk with regard to individual docs who are willing to help us.

As of right now, because of Reeves and his ilk, it is accepted practice (not malpractice) for physicians to consider this diagnosis a psychological one.

Times are a changin' quickly and no one wants to see these people buried more than I do. Still, as of right now, a lot of these doctors are following accepted protocol.

My concern with the "lawsuit" talk is that it is a threat to those few doctors willing to work with us. I saw one thread roughly a year back on another forum where a PWC discussed suing a physician for failing to diagnose Lyme Disease because this doctor did not order an IgeneX test. Fact: the IgeneX test is controversial. Some physicians believe in it, but most do not. Failure to order it is not malpractice.

Again, I know what it's like to want to lash out, having been sick over fifteen years myself. Still, let's save our anger for the assclowns at the top who have been setting policy, not the individual practitioners who are at least willing to help us.

Here's to hoping that a year from now that it is actually considered malpractice to treat PWCs in the manner in which we have been treated.

 

[misskoji]

Thank you daisy

I will be sure to post my results-when I get them.

Aftermath, I hadn't thought of it that way and you really made me think. Your posts are always insightful, thank you.

Well, I am disheartened. Even though I was assured he would run the test before I made the appointment, I got nowhere yesterday. Well, maybe not nowhere, but without a blood draw planned.

When he entered the room I had neatly stacked the Science article on top of some other publications and the test paperwork. He grabbed it right away and was very impressed by the fact that it was in Science News, said he grew up reading the publication. He finished reading the publication and remarked something about "why hasn't this been on Oprah yet". I thought he was being sarcastic but he went on about the subject. He said well, I bet it will be soon.

I thought I was in like Flynn. I told him of the further research findings made after the Science publication and he acutally listened to me quite intently.

And then...he told me I need to see an ID. I told him there was at least six weeks waiting time before I could get in, and that I tried.

I told him I wanted the test ordered. He went on about things I already knew and I made that known...things like the study needing to be replicated, no available treatment with positive test results, ect. He "tried" to get the test codes into the computer system...after a couple of minutes he gave up...


Then it got weird. He went on to tell me I needed to get my CFS dx confirmed. Why, idk because they have all my records from 6 years ago when I was dx originally. He digressed and wanted me to take a depression survey. Without boring you all with the details, I agreed and only after a great debate with him.

Long story short, I walked out of there with an Rx for anti-depressants I don't need and I will not take, and nothing more. But he sure did want those articles of Science and all copied for his office. The whole thing has left me confused.

I also called Lerner's office to see if he would be agreeable to running this test. I was informed he would not. I didn't ask why. I can only speculate that it's because this test has only a positive/negative result and no specific levels, ect. That's cool, I respect that and very much admire Dr. Lerner.

But I still want the test run...so I'm working on another doc today.

I am mailing out a test today, and still have the other available if anyone wants it.

 

[Hysterical Woman]

Misskoji

.

Well, I am disheartened. Even though I was assured he would run the test before I made the appointment, I got nowhere yesterday. Well, maybe not nowhere, but without a blood draw planned.

............

Then it got weird. He went on to tell me I needed to get my CFS dx confirmed. Why, idk because they have all my records from 6 years ago when I was dx originally. He digressed and wanted me to take a depression survey. Without boring you all with the details, I agreed and only after a great debate with him.

Long story short, I walked out of there with an Rx for anti-depressants I don't need and I will not take, and nothing more. But he sure did want those articles of Science and all copied for his office. The whole thing has left me confused.

I also called Lerner's office to see if he would be agreeable to running this test. I was informed he would not. I didn't ask why. I can only speculate that it's because this test has only a positive/negative result and no specific levels, ect. That's cool, I respect that and very much admire Dr. Lerner.

But I still want the test run...so I'm working on another doc today.

I am mailing out a test today, and still have the other available if anyone wants it.

Hi Misskoji,

So sorry that this doc didn't do what you needed. Just a rx for anti-depressants? Are some doctors going backwards? Is this another case of the term that Jerry S. coined in another thread- sadism-by-proxy?

I would be interested in knowing why Lerner's office is saying that they aren't currently running this test. Maybe he is adopting the stance that Dr. Bell is taking? I have seen Dr. Lerner twice and it is disappointing to think that he wouldn't run the tests.

Let us know what you find out for the doc you are "working on" today.

Take care,

Maxine

 

[firbopt1997]

I was told that if I wasn't going to be able to use my test kit for any reason to ship it back to them...but I am not sure. I think if you send them back they can get more people off the list making it a shorter wait time for others.