illsince1977
A shadow of my former self
- Messages
- 356
I am having a dilemma about getting tested for XMRV/MLVs.
My blood was drawn in November for a study at WPI. This study was done through my doctors practice.
My doctor sent a cohort of patient samples to WPI to be part of a study after publication of the original Science paper. My blood was drawn in November 2009. WPI is going to process the entire cohort as a batch and they do not know to whom each sample belongs, but my doctor does, of course.
Apparently a large part of the delay in processing these samples has been caused by the necessity of proving there was no contamination in the lab of the samples in the original paper thank you, again CDC! But I am still waiting for results. The doctor and study coordinator at his office keep telling me there is no hurry and the testing they do as part of the study will be so much more thorough and resource consuming than anything I can get through a commercial lab so I should wait They are also not going to initiate treatment anyway, so just sit tight something I find discouraging and a bit infuriating since Im totally bedridden at this point. I have emailed WPIs clinical trials email address to try to get more information on what their timeline for processing these samples may be, and if I should order the test from VIPdx or not. They have not responded. I called the phone number for their admin offices on the website, which was the only one I could find, but there is no answer. I called VIPdx this morning and their recorded message says they are not sending serology test kits at this time. My understanding is if you are positive via serology, Mikovits considers you positive and stops testing. Do I have that right? If so, they may already know that many in the cohort are positive without expending a great deal of their resources, but we wont know because they are not going to give the doctor results until the whole batch is done. The study coordinator already knows she is positive. She works there and they are not treating her. But then again she manages working though very part time, and perhaps I have less to lose because Im already bedridden.
Im being thwarted everywhere I turn. I didnt push being tested until late July because I thought I already was being tested. I talked to my doc then and he deflected me then with the arguments Ive already reiterated above. I feel that without a positive test I cant push them into prescribing ARVs for me, which I feel Im a good candidate for. WPI seems unreachable via email or phone. VIPdx is not answering their phone either, but a recorded message says they are not sending serology kits at this time, even though I thought someone on PR said they were yesterday.
I would appreciate your input and hearing of your experiences.
-Susan
My blood was drawn in November for a study at WPI. This study was done through my doctors practice.
My doctor sent a cohort of patient samples to WPI to be part of a study after publication of the original Science paper. My blood was drawn in November 2009. WPI is going to process the entire cohort as a batch and they do not know to whom each sample belongs, but my doctor does, of course.
Apparently a large part of the delay in processing these samples has been caused by the necessity of proving there was no contamination in the lab of the samples in the original paper thank you, again CDC! But I am still waiting for results. The doctor and study coordinator at his office keep telling me there is no hurry and the testing they do as part of the study will be so much more thorough and resource consuming than anything I can get through a commercial lab so I should wait They are also not going to initiate treatment anyway, so just sit tight something I find discouraging and a bit infuriating since Im totally bedridden at this point. I have emailed WPIs clinical trials email address to try to get more information on what their timeline for processing these samples may be, and if I should order the test from VIPdx or not. They have not responded. I called the phone number for their admin offices on the website, which was the only one I could find, but there is no answer. I called VIPdx this morning and their recorded message says they are not sending serology test kits at this time. My understanding is if you are positive via serology, Mikovits considers you positive and stops testing. Do I have that right? If so, they may already know that many in the cohort are positive without expending a great deal of their resources, but we wont know because they are not going to give the doctor results until the whole batch is done. The study coordinator already knows she is positive. She works there and they are not treating her. But then again she manages working though very part time, and perhaps I have less to lose because Im already bedridden.
Im being thwarted everywhere I turn. I didnt push being tested until late July because I thought I already was being tested. I talked to my doc then and he deflected me then with the arguments Ive already reiterated above. I feel that without a positive test I cant push them into prescribing ARVs for me, which I feel Im a good candidate for. WPI seems unreachable via email or phone. VIPdx is not answering their phone either, but a recorded message says they are not sending serology kits at this time, even though I thought someone on PR said they were yesterday.
I would appreciate your input and hearing of your experiences.
-Susan
