Discussion in 'XMRV Testing, Treatment and Transmission' started by Levi, Nov 11, 2009.
Test Kits for XMRV
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.
I hate to wait too! Maybe because they told me 4 weeks (after giving out that 6 week time frame for a while), the number of requests are slowing down? And as a result you migh get your kit sooner? I hope so. I am a different story in that I am trying to find out if Medicare will cover the tests. Currently, I don't see anything on line that would say yes or no either way. If Medicare won't cover it, I might have to wait even longer.
Please keep us updated, and good luck. As results begin to role in, there will be lots of us out here for support whatever the outcome.
My test was done in mid September under very hush-hush conditions. I was, along with others in a previous small study, asked to come in and have my blood drawn without being told what for. When the Science news broke I was told it was for XMRV using both PCR and antibody tests through VIP by way of Mikovich. I was told on October 26 that the results would be ready "in about a month," that I would be given the results, but that the lab was "swamped."
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.
So . . . I'm waiting, but I don't know if I'm waiting in vain. My doctor's office is now very involved with this research but also not anxious to get test results done other than for informational purposes, and as far as I know are not starting treatment protocols at this time. I have an appointment next week and will find out more directly what may be my next step.
Their response to XMRV was posted by Cort in the "XMRV Resources" section under "The Scientific Paper" titled "Excellent Overview from Gordon Medical Associates" (though they were not a "partner" in the Science study).
So . . . I'm still waiting. I feel anxious about it, not that I need it to turn out either way (although I think maybe I do and will be surprised, and disappointed, if it is negative), but that I want to know if I am waiting for something or nothing. I also feel anxious about WHAT DOES IT ALL MEAN? For me, for all of us who are sick, for our children and friends, for treatment, for being able to afford treatment, for being able to tolerate treatment . . . I think I just want to know so that I can make the adjustments and then move forward. I am SO glad that I get to spend this difficult waiting time with all of you on this forum. If nothing else, it feels great to know that I'm not alone.
I will share my results when they come both in the polls and in more detail if there is interest.
I had my blood drawn at the same doctor's office for similar reasons although not until last week.
My lawyer wanted me to get tested for my ssdi appeal. They are now telling patients 2-3 months to get results.
So there's a chance we won't actually get any results?
I'm wondering whether I'm going to have to pay the money to get tested to help my ssdi case.
Waiting, waiting waiting
Yes I am waiting... And I don't seem to be very good at it.
VIP lab received my sample last Wed, so I should get the results next Wed. I will post the results.
Interesting, Levi. They seem to jump on things really quickly which is good.
When do you expect to get your results?
Unfortunately, this doesn't surprise me but it does frustrate me. It might all come down to how vigorously your submitting doctor fights for you. My own primary care doc, who originally seemed very interested in CFS, has lost interest over the years. The last couple of times that I saw him he clearly didn't care anymore about new research - I'm not sure whether that is just around CFS, or if he is just suffering general burnout. At least he has never told me that he thinks I am crazy, nor suggested that I just had childhood abuse in my past!!
So, rats, I guess that just leaves those of us with medicare in the position where we have to decide whether we are willing to risk it.
Thanks for doing the phone work on this! Maybe others on Medicare will post their experiences if they go ahead and have the lab work done.
Vipdx called me on Monday and said they are sending out my test kit on Wednesday the 11th, I think they fed ex the test. I'm hoping to receive the test kit today or Friday, I have a doctor's appointment for Monday morning the 16th and I'm hoping to get my blood drawn and the test kit sent off to VIPdx. I live in Washington State and i'll post my results when they come in.
I feel like a kid on Christmas eve.
I'm sure you would have a good reason for doing that, but I don't understand...
The goal is to not have something like this in your medical records if it later turns out that XMRV is the cause of CFS.
Might make it hell to get medical insurance.
Hopefully, he paid casah.
I have never posted before, but I'm finally motivated. I had my xmrv blood drawn last thurs., so the VIP labs would have run it last Friday (a week ago). The (very nice and efficient) Megan said I would get the results in 2 weeks. It sounds like they've gotten way off from this time frame in just a short period of time. Has anyone waited more than 2 weeks after they did their blood draw?
I am not sure how I feel about the results. I think it will be positive, but from what I can understand the two tests (the $650 test package) is that this is what they used that detected 67% positive in the original study written up in Science. The other two tests they did after that showed the 99% positive XMRV in the subject. This is my own understanding and I may not be correct. Since my CFS is mild-moderate at this point, maybe I will be a false negative. Does anyone else think the result may effected by how severe your illness is? Or is this just my brain fog thinking
I am not a patient of Gordon Medical Group as most of you== are as someone noted. I just decided to do this on my own. (My doctor did the blood draw, but isn't a cfs doctor by any means.)
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? Is it worth taking retrovirus drugs that I have heard have terrible side effects? Should I be stocking up on the supplements recommended by alt. med doctors that treat AIDS (and post their protocols on the web)?
Is XMRV a "stealth" virus? Could it benefit from Lumbrokinase? (I got tested for the hypercoagulated blood ISAAC panel.)
I will post my test results if I can find the poll page again.
extra test kits from vip
i got my test kit from vip, and they sent me a few extra. i will give some to my doctor's office, but likely have 2 extra ones. i can send to someone, if they want...?
lost my initial excitement
Although my blood test was done in mid-September, I still haven't gotten my results back. I just had my appointment with my doctor yesterday. I have been a patient of his for a long time. I'm pretty wasted today so this will be short.
We have tried numerous protocols and he is very much on the cutting edge of research collaborating with Shoemaker and Rich and Cheney etc. Three or four years ago he was excited about trying to solve the riddle of my illness. Though compassionate and not willing to give up, he is no longer excited. As he is now collaborating with WPI and beginning a small study regarding XMRV in his patients, I thought maybe there might be a slight change at this appointment. Around twenty minutes into the appointment, after going over the same symptoms and new test results, I finally asked him about XMRV. His reply was that it was an interesting development but we would need to see what turns up with new studies and what new treatment protocols might develop. Then it was back to trying to treat my symptoms. I have another appointment in two months.
I have lost my initial excitement over this discovery. Hearing Nancy Klimas talk about transmission from mother to child and father to child, and reading all the stories of how so many of us became ill, I am now more concerned about my children. I worry about them having experiences that might trigger this illness (or one of the other illnesses that are testing positive for XMRV). My older sister is now having CFS / FM type symptoms (has not been appropriately diagnosed), and her daughter has mono that is not resolving. One of my younger sisters had chemo for breast cancer five years ago and is still struggling with fatigue and cognitive issues that have a similar feel to my symptoms on my good days.
Today may not be the best day for me to post as I am extra tired and I am not feeling very hopeful for a speedy resolution. I am hoping, though, that we will soon learn more about transmission and prevention so that my children and grandchildren won't have to deal with this devastation.
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....
I guess I never let myself get excited about XMRV as something would lead to us getting well. Too much unknown, too far down the line, etc. Sorry I am not at all articulate today, barely spelling..
I guess my excitement has been in the de-stigmatization of the illness. In the possibility of a bio-marker so at least the tragedy of this illness is not compounded by .... well you all know what I mean...can't find the words.
Physical suffering is hell. I am just hoping that XMRV might be the beginning to the end of the the other hell we go through.
If we can get better, if our children can stay well, that would be very wonderful...but I don't let myself go there, I think.
Thinking of you,
xmrv test kit
I sent an email request, I recommend others call instead of doing that. I got a reply email saying my request was forwarded and it would be about 3 weeks, but I don't know if that was accurate given the timeframes others were given and that I didn't talk to Megan directly and don't know when or if she got the email.
Once I get the kit, I have to send the form to an out-of-town doctor and wait for him to sign (my local doc thinks CFS is psychological). Then I will hopefully go to a lab here and get the blood drawn and send it off myself at FedEx.
I have been strategizing some, and it's really good to hear what you all are finding out and going through and thinking about.
The doctor who is signing for mine is a friend of Dr. Teitlebaum's, so he said "Why do you want this? Isn't Lyme enough?" I said I just want to rule it out.
But also, I think it will affect my treatment choices. Why keep taking high doses of antibiotics if XMRV may be messing with my immune response? I know we don't know that yet, but it seems a possibility.
Anyway, it sounds like it may be a few months before I find out, so I think I'll just wait until there is more info before I go off the antibiotics. (I have gone off valtrex, though they say it doesn't matter; I take 1000 mg in hopes of maintaining gains from valcyte, but the viral symptoms are creeping back.)
My best to all of you. I live alone, but even so, it makes you wonder about passing it to someone else. That's another reason I want to know. Texas has "risk pool" insurance so I'm not worried about being uninsurable. It's probably good to be cautious, but I doubt I have a long life-span ahead anyway.
I will post more if I find out anything. Good luck to all!
what I was expecting
I wasn't expecting any treatment suggestions, and in fact would not try anything at this time, unless of course it made utter and complete sense to my particular case, was affordable, and most importantly, doable in my condition. What I think I was hoping for, maybe expecting, was a slight rumble of excitement that this was something holding promise down the line. In all fairness to my doctor, my appointment was Friday afternoon and he was trying to wrap things up because he will be gone next week. I would imagine that he has had to answer this question numerous times since the Science study came out. I am glad, at least, that they are doing an in-house study of the prevalence of XMRV in their patient population, not just of those of us with CFS, but with Lyme and FM and other intractable chronic conditions.
But yes, I am hoping that some treatment protocols will become available.
Thanks Marylib. I think you do know.
I received my kit yesterday
and plan to get my blood drawn Monday so that it gets to VIP on Tues. because they're closed on Thursday for Thanksgiving. I plan to go to either Quest or LabCorp.
Does anyne know the correct codes for Medicare? I think the CPT code is 87798-which Medicare pays for depending on the diagnostic code. Does anyone know the correct diagnostic codes? My doctor wrote a diagnostic code but I can't read his writing.
I was diagnosed with CFS by a well known CFIDS Dr. but got better on antibiotics. No post exertional fatigue anymore, no more symptoms. It took 3 years, but well worth it.
I still don't get what the point is of testing for XMRV if there is no treatment other than dangerous HIV drugs? I'd definitely be spending my money on coconut oil, Lauricidin, etc..before you wait around for any real treatment for this. There is so much research yet to be done before it can be proven that it is the cause of all cases of CFS.
You can also try a Google Site Search
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