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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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hi andrew and koan, thank you
this is what VIP told me when i emailed them about the 36% number:
"When Whittemore Peterson did their research it was on a small group of patients who have a confirmed diagnosis of CFS.
VIP Dx is testing hundreds of patients whose medical history is unknown and a diagnosis of CFS may or may not be confirmed.
Although we strive to offer the most sensitive test available XMRV is typically present at a very low-copy number and may be below the limit of detection from time to time.
Retroviruses (like XMRV) are integrated into cellular DNA and are considered life-long infections; it is possible that the immune system may decrease the virus to a level below the limit of detection from time to time (non-symptomatic). Presently, the life cycle of the virus is unknown; if you receive a positive result at any point, we do not recommend re-testing.
XMRV testing at VIP Dx uses the same methods as published in the Lombardi, et al, October 2009 issue of Science. This test included PCR testing on lymphocytes as well as virus culture. This method requires 20mL of whole blood and although it is much more time consuming and labor intensive than other methods, we find that it dramatically reduces the rate of false negative results. It is also why the cost of this test is greater than that of tour standard PCR tests."
by "confirmed diagnosis", i take it they mean people with abnormal RNase L ratio's...?
i am sure they got a bunch of blood from autism and MS patients, too. that may account for the low percentage.
sue
i have a couple of questions about naltrexone....was wondering if someone out there might know.
my NYC doctor said he could mail it to me from NYC (he deals with a compounding pharmacy there). i decided that since i am so ill and the compounding pharmacies here are so far, i will let him send it to me...can it be sent by mail or would the temperature changes harm the drug?
is it taken orally?
the doc said he wouldnt prescribe AZT to me. i am surprised. now i have no way of getting an antiretroviral unless i test positive to XMRV (in which case a local doc has agreed to help). the NYC doc said he has no experience with the drug and it is toxic.
i emailed klimas, who said that azt "is not her favorite drug" and that i should be patient.
i feel like i have an alien in my head and neck trying to get out. i think IV cidofivir would help - i know it would - but i cannot afford it. i suspect HHV6 is a big factor for me.
i will have to make do with naltrexone until the antibody test is available. i have to eventually show exposure to XMRV or i am toast.
i have a couple of questions about naltrexone....was wondering if someone out there might know.
my NYC doctor said he could mail it to me from NYC (he deals with a compounding pharmacy there). i decided that since i am so ill and the compounding pharmacies here are so far, i will let him send it to me...can it be sent by mail or would the temperature changes harm the drug?
Yes.is it taken orally?
i feel like i have an alien in my head and neck trying to get out. i think IV cidofivir would help - i know it would - but i cannot afford it. i suspect HHV6 is a big factor for me.
i will have to make do with naltrexone until the antibody test is available. i have to eventually show exposure to XMRV or i am toast.
but you might have at least 88 messed up genes. There's still hope. In fact I'm holding out more for the genetic stuff than XMRV
Kati
how about XMRV being the phenomna that changes the genes.
then perhaps the damge is doen and it moves on, would exposure to xmrv in the womb show up as an adult?