VIPDx Serology (Antibody) Test Results Yet?

[*GG*]

Anyway, thanks, Tina. Any other suggestions or reminders are most welcome and greatly appreciated. What would you say if you had this opportunity? Anyone?

Not sure what I would do, we are fragile people. I don't think the stress of public speaking would be good for, I would like to share some knowledge and pass along info, but I would worry about what it will take out of you!

GG

 

[3CFIDS@ourhouse]

Thank you so much, Stone, for your kind response! I am still flabbergasted. I will be thinking about your CME talk. My son just graduated from medical school- he did not have even one lecture on CFS! And, these future physicians were taught that if a patient has symptoms that don't seem to fit a disease (that you've been taught about ), it's probably just in their head. This is 2010. And we wonder why our doctors don't listen- they are seriously indoctrinated! Now you have the opportunity to educate and deprogram.

 

[George]

Hey Stone an incredibly well written piece and really it needs to go up as a beacon of light in the current black out. (grins) Maybe we could get it on XMRV global action or get it promoted to an article.

3CFIDS wow! congratulations on your positive! But that must have been a full body punch as you were not expecting it.

On a totally off topic note did anybody notice that the serology stuff was released all at once and right when the BWG is suppose to release the Phase II results after the "meeting" last week? Yes, I am beating that poor dead horse once again. I really really want my BWG Phase II results. (big grins)

 

[Stone]

Not sure what I would do, we are fragile people. I don't think the stress of public speaking would be good for, I would like to share some knowledge and pass along info, but I would worry about what it will take out of you!
GG

Aww, thanks GG, for your concern. So kind of you to 'watch my back' as well, but I've had a lot of practice with public speaking and I'm quite used to it, and the talk is probably not going to be very long. I think if I'm wheeled in from the parking lot and I sit while speaking I will be fine. I have medication I can take (only occasionally) for OI, so as long as my pain is under reasonable control I can do it. I perform weddings once in a while with my "public speaking" health protocol: hydrate, increase salt, bathe the night before and get everything ready instead of waiting till the day of, wear comfortable clothing and shoes, take OI meds, control pain, have a driver, eat lightly, prepare notes word for word in large print in case of brain fog or blurred vision, bring all emergency meds, and so on.

And quite frankly, I would do this if I had to crawl through broken glass. This needs to happen for the good of the ME/CFS community here, and who knows where the people who hear this talk will end up someday? And besides, I really want to give my doctor the opportunity to redeem himself in the hopes of having a decent relationship with him in the future, which I think we can all agree is vital for us.

Oh yes, that reminds me, I left a part out of my post about the doctor visit. The doctor wanted me to get a flu shot immediately if not sooner. I told him that I was worried it would cause a flare and that it could shoot my viral load up, and I asked if I could take it in two divided doses a month apart. So we were discussing my immune system, and I couldn't stop myself from mentioning that I can often tell when my immune system is down, like it was just before my gallbladder surgery. I said, "I knew my immune system was in a ditch and I knew I was going to get a post-operative infection and I tried to prevent it, but I ended up with a very dangerous infection anyway. I really wish something could have been done to prevent that." He looked up and stroked his chin as if he were trying to remember something and then it came to him. It was obvious by the look on his face that he remembered that I had called about those concerns and he responded by basically just patting my head as if I were a whiney little child. He didn't say anything about it specifically but it was clear to me as well as my husband that he just didn't know what to say to that. He just kind of moved on into what he thought was the solution and started talking again about getting me in to the ID guy.

In spite of what it could cost me personally by doing the CME talk, the hope of helping to spare maybe just one PWC from being treated like a whiney child on just one occasion outweighs whatever risk of setback there might be to me. I would welcome your prayers or positive energy or whatever applies.:innocent1:

Stone

 

[Lynn]

She gave me the result of another recent lab test and the result of my serology test---positive! At this moment, I am not quite sure how I feel It is completely amazing to think that my 19 year old daughter who has been sick for 7 years, my husband (sick 8 years) and I (sick 10 years) have hope of getting better. But it is sobering to think that my son and his wife and our other daughter, her husband and three toddlers may have a lifelong retrovirus that no one yet knows how to treat. It's a lot to think about. :

Hello 3CFIDS. It is scary stuff. We should get together an XMRV support group. When I told my husband about the positive test, he immediately thought of my life span being shortened. I say, we don't know yet, but at least we can put a name to the virus that may have taken our lives away. This has given me hope. If I had a negative test, I would have felt like I was asking the same question as always; "why don't I buck up?"

I like that I can bury that question once an for all.

Good Luck with your extended family. It has to be scary. I think the thing to concentrate on is that if they are infected, they were already infected. But by putting a name to it, there is hope.

Warm regards,
Lynn

 

[Stone]

Hey Stone an incredibly well written piece and really it needs to go up as a beacon of light in the current black out. (grins) Maybe we could get it on XMRV global action or get it promoted to an article.

3CFIDS wow! congratulations on your positive! But that must have been a full body punch as you were not expecting it.

On a totally off topic note did anybody notice that the serology stuff was released all at once and right when the BWG is suppose to release the Phase II results after the "meeting" last week? Yes, I am beating that poor dead horse once again. I really really want my BWG Phase II results. (big grins)

Wow, what a nice thing to say, George. I thought the writing left a lot to be desired, having written it very late at night and my vision was so blurry I couldn't read what I was typing. I'm amazed it makes any sense at all. LOL

Anyway, YES!, the timing of the actual running of the serology tests and the subsequent release of the results almost all at once, does make me think they were waiting on something. I don't doubt it at all, especially when you look at the timing of when VIPDx started offering the serology tests a couple of months ago. That was slated for a certain date which was then suspended when the Lo/Alter paper publication was suspended, then upon it's publication, VIPDx was suddenly able to offer the serology test and it magically included the antibodies for the viruses in the Lo/Alter paper. That's what I call fancy footwork. I'm convinced they know certain things before we know them. That's okay with me, but I do hope some news about the BWG's progress and staging is forthcoming soon!
Stone

 

[AliceZ]

Aww, thanks GG, for your concern. So kind of you to 'watch my back' as well, but I've had a lot of practice with public speaking and I'm quite used to it, and the talk is probably not going to be very long. I think if I'm wheeled in from the parking lot and I sit while speaking I will be fine. I have medication I can take (only occasionally) for OI, so as long as my pain is under reasonable control I can do it. I perform weddings once in a while with my "public speaking" health protocol: hydrate, increase salt, bathe the night before and get everything ready instead of waiting till the day of, wear comfortable clothing and shoes, take OI meds, control pain, have a driver, eat lightly, prepare notes word for word in large print in case of brain fog or blurred vision, bring all emergency meds, and so on.

And quite frankly, I would do this if I had to crawl through broken glass. This needs to happen for the good of the ME/CFS community here, and who knows where the people who hear this talk will end up someday? And besides, I really want to give my doctor the opportunity to redeem himself in the hopes of having a decent relationship with him in the future, which I think we can all agree is vital for us.

Oh yes, that reminds me, I left a part out of my post about the doctor visit. The doctor wanted me to get a flu shot immediately if not sooner. I told him that I was worried it would cause a flare and that it could shoot my viral load up, and I asked if I could take it in two divided doses a month apart. So we were discussing my immune system, and I couldn't stop myself from mentioning that I can often tell when my immune system is down, like it was just before my gallbladder surgery. I said, "I knew my immune system was in a ditch and I knew I was going to get a post-operative infection and I tried to prevent it, but I ended up with a very dangerous infection anyway. I really wish something could have been done to prevent that." He looked up and stroked his chin as if he were trying to remember something and then it came to him. It was obvious by the look on his face that he remembered that I had called about those concerns and he responded by basically just patting my head as if I were a whiney little child. He didn't say anything about it specifically but it was clear to me as well as my husband that he just didn't know what to say to that. He just kind of moved on into what he thought was the solution and started talking again about getting me in to the ID guy.

In spite of what it could cost me personally by doing the CME talk, the hope of helping to spare maybe just one PWC from being treated like a whiney child on just one occasion outweighs whatever risk of setback there might be to me. I would welcome your prayers or positive energy or whatever applies.:innocent1:

Stone

Stone-
Have you ever had 'flu shots before? If not, you may want to be extra careful before having them. I definitely like your idea of dividing the doses. I had those shots for 3 years in a row because I worked in the public schools and thought they would do me some good, and ended up very sick with the 'flu (which they said I couldn't get from the shot), multiple ear infections and multiple episodes of tonsillitis all three years that started a week after the shot that basically lasted all winter. I have not had the 'flu shot in the 12 years since and have not had the 'flu nor any ear infections since then. Although I didn't realize it at the time, I suspect that my abnormal reactions to the 'flu shots had something to do with the CFS and our screwed up immune systems.

 

[Francelle]

Hi Lynne, Stone and 3CFIDS@ourhouse,

The positive results sure are rolling in this week!

It will be very interesting 3CFIDS to see how your other family members' XMRV results pan out. I guess it will be another couple of months plus 'til they find out - but keep us posted if they don't mind you sharing! What a shock for you opening that email. I can only imagine.

I got a surprise call from a CFS doctors office the other day to ask whether I would like to be in a study. I immediately said 'yes' but didn't ask what aspects the study was looking at. After I got off the phone I had the wild (and exciting) idea it may include XMRV testing but it probably wont. I guess I'll know soon enough.

 

[Stone]

Oh boy Francelle! How exciting to be in a study! I've always wanted to participate in one but so far, there hasn't been one in my area yet, and I keep checking in Charlotte and Raleigh at Duke University, but nothing so far. I hope your study does involve XMRV testing. It makes sense that a CFS study these days could involve XMRV testing. I'm keeping my fingers crossed for you. Let us know, will you?
Stone

 

[illsince1977]

George-I'm totally with you on the timing. This must have to do with the release of BWG meeting results (or should I say lack thereof?).

Stone-just read this nail biting thread start to finish. Well done! and well written! I too, was suddenly overwhelmed with the feeling I would collapse (and that only -no fluish feeling) over 33 years ago. Is that what happened to you? Thanks for standing up (not literally, of course) for all of us!

Sushi-Have you no options here in the US?

 

[Sushi]

Hi Everyone,

I just got my serology results: none detected. This is what I expected as I was positive by culture and a number of others seem to be positive by culture and negative for anti-bodies.

For those who are biting their nails, I sent my blood on Aug 30th, got the culture results a few weeks ago and the serology only today.

And yes, we need a new poll!

Sushi

 

[Stone]

Hi Everyone,

I just got my serology results: none detected. This is what I expected as I was positive by culture and a number of others seem to be positive by culture and negative for anti-bodies.

For those who are biting their nails, I sent my blood on Aug 30th, got the culture results a few weeks ago and the serology only today.

And yes, we need a new poll!

Sushi

Yay! I'm glad you finally got your results and the long wait is over.
It's interesting to me that many who are reporting results here are positive by culture and negative for antibodies. I myself was just the opposite.

I understand that if the virus is at a very low level in your blood that you might have a negative culture, and if you've been sick a long time your body may not be doing such a great job making antibodies and you might test negative for antibodies.

The interesting part is that I've been sick for 15 years, which is not as long as many but I still consider it a 'long time' and I would have expected to be negative for antibodies.

Also, I'm in one of the lowest states of health for one of the longest periods of time that I've ever been in since those awful first few years in bed after my acute onset, so I would have expected to be positive by culture.

Fascinating, isn't it?. Just goes to show you how important laboratory assays are in medicine, and that you can't tell everything by symptoms and history.

How wonderful it is that we finally do have some kind of assay that may eventually "prove" beyond all doubt that we're really not a bunch of whiners who aren't trying hard enough.

I hope and pray that for those of us who test negative/negative right now, something turns up soon; be it more sensitive or broader testing for this bug(s) or findings of the true cause, whatever that may be.

As I said before, even if this bug doesn't turn out to be the answer, at least all of us who have this disease and/or related disorders are squarely on the map now, and for that I'm ever so thankful.

Glad you got your results, Sushi. I wish you a swift return to health!