XMRV results

[Eric Johnson from I&I]

It would be difficult to design an antibody test that would not be cross-reactive to MulV, a common rodent virus. Since mice actually shed XMRV in small amounts, I can see this as a huge problem. Merely kissing your pet rodent could trigger a positive antibody test.

Does anyone who is healthy and XMRV- by PCR actually test positive for anti-MuLV antibodies? Its not a given that the answer is yes. In the paper, 7 of 7 healthies (probably all PCR negative) tested negative for antibodies (using SFFV to bind the antibodies). They have almost certainly tested many more people by now.

 

[gracenote]

hundreds of mice and rats

The true test would be to lock that negative by PCR XMRV- patient up in a room with hundreds of mice and rats for a couple of weeks, and then do antibody testing on him.

I can't imagine what diagnosis this poor soul would end up with after that experience.

 

[Michael Dessin]

Hmm

Some days it would probably feel better being mouse food

The antibody question is a good one!

I remember testing positive for certain virus like HHV-6 and CMV several times, I'm talking active IGM, but at different times not showing up at all on PCR??

SO that might mean, to make sure.... we will have to get the antibody test for past infections, in the future???

Wildaisy, I'm not sure, the doc and a few others at the clinic had brought it too my attention?? Wish I knew more???

M

 

[calzy]

Fresh Eyes

I saw Dr. Klimas yesterday, and she discourages paying for the test right now, apparently it still has to be validated, projects possibly 4-10

YEP..months..I think she knows something we dont

 

[dmarie4301]

I agree Cort

I will have my test results from Cooperative on Monday. I SO hope I have HMRV!! Why??? Cuz that will explain why I have felt like Ive had the flu for 20 years. As the years go by, I just want to know WHY. Why have I lost so much of my life?? I have come up with nothing that works....something is dreadfully wrong with my body....Ive known this in my soul for a long time. I cant even take thyroid medication and I need it! Why cant I just take thyroid meds like anyone else and feel better???? Something is not working right AT ALL. And Im tired of being my own detective and guinea pig. IM SO WORN OUT on every level of trying to get well. Knowing will start the emotional healing process that I havent been able to do.

 

[fresh_eyes]

YEP..months..I think she knows something we dont

Thanks very much for passing Klimas' advice along, calzy - very helpful as I'm trying to make decisions. I imagine she knows *all sorts* of things we don't.

 

[Parismountain]

Confused

I know the Reno lab has 2 tests. I know the XMRV paper had 67%. Later on in unpublished data it grows to high 90% positive. This growth was due to refining? Here's my simpleton question. For the posters who have tested negative for XMRV paying for both tests, aren't there really 4 tests they need to do and two of them just aren't available right now? I'm holding off till all 4 components are in just for this reason. If you miss on the first round how do you know you are negative for XMRV if there's 2 more (I think antibody) to go?

I know this has been covered probably but sorry for being so dense.

K

 

[Michael Dessin]

Dmarie4301

Medicine does not work because your thyroid is damaged. Taking thyroid medication might actually make you worse.

If you test positive it does not mean XMRV is soley responsible for your ME/CFS. It does mean you have a really nasty virus though, neuro-degenerative.

M

 

[dipic]

Medicine does not work because your thyroid is damaged. Taking thyroid medication might actually make you worse.

If you test positive it does not mean XMRV is soley responsible for your ME/CFS. It does mean you have a really nasty virus though, neuro-degenerative.

M

You state your opinions as if they are fact.

 

[Michael Dessin]

dipic

Sorry dipic, next time I'll cite information I post. Maybe you can challenge Dr Hyde as well. Of course I'm assuming that 4301 is a true ME sufferer. Also, theres no proof yet, that XMRV is the cause of ME, and I know you love scientific evidence....

Later

Secondary Organ or System Injury: The CNS (central nervous system) injury
is associated with measurable immune dysfunction and probably dysfunction of the chemical and hormonal regulatory system that allows for proper functioning of the endocrine glands, the peripheral vascular system and muscle physiology.

The most traumatized and injured organs in M.E. are (a) the thyroid gland that in part regulates energy and (b) the normal homeostasis of the vascular systemto respond to temperature change and changes in normal physical activity. Allof these pathologies are measurable. One of the most severe forms ofSecondary injury in M.E. patients are the thousands of patients, easilydiagnosed and who have an associated dysautonomia, vascularincompetence where the patient is unable to maintain normal stable bloodpressure with any activity. Hyde

 

[Eric Johnson from I&I]

Personally Hyde's opinions opinions on things dont weigh too heavily for me. Permanent damage is possible in CFS, but people have recovered from severe cases of every symptom, and some have recovered from CFS altogether.

In my case I run and erg not all that much worse than I did in high school; I have run up to 6 miles and my times were not too bad at all, something under 50 minutes as I recall, or close to 50. I read about 4 times faster than I did with severe brain fog when I had severe CFS. Indeed, these days I am mostly just crabby and slow moving, and dont really feel fresh as the morning dew or anything. But I dont suffer.

 

[Michael Dessin]

EJ

Guess we differ on our opinion of Dr Hyde.

Thanks for sharing that information on recovered patients.

By the way, I was speaking of ME not CFS.

Take Care

Mike

 

[dmarie4301]

Thyroid and XMRV

Thanks Michael for your post. A Dr. Richard Shames in Santa Rosa, Ca, is treating CFIDS/Fibro patients and stating that many of us in that category are really suffering from undiagnosed or poorly treated low thyroid function. I grabbed onto this since I have many family members on both sides of the family with thyroid illness.

I said, self, this must be you!!! You can get well. After 3 years of playing around with thyroid, both synthetic and natural and with hydrocortisone, Ive come to a dead end in this arena. Thyroid meds help sporadically and did reduce my pain, I was able to get off Vicodin for a couple months. But the benefit wouldnt last.

So, Dr. Shames' approach has value for many people, but if I get XMRV positive results (still waiting for Cooperative Diagnostics), I have read that it can impact every system in your body....maybe some systems affected more for one person than another.

Anyway, knowing that XMRV may be screwing up my bodily enzyme sytems, etc., it would make sense that I cant seem to take thyroid without getting massive headaches. At least up to a certain point, it's too much.

15 mgs hydrocortisone is the best thing Ive ever discovered in 20 years. I dont feel like I have to collapse every half hour or so. That's a boon! I love my hydrocortisone.

Thanks for the imput, Michael.

Donna

 

[Kati]

can't believe so many hope they test negative. i am praying for a positive result ... but i am probably sicker than most.

sue

Sue, I also hope for a positive, as I think the chances of getting off my bed and back to my life are higher than if I stay stucked with CFS bucket diagnosis.

 

[kurt]

Mike, Cooperative Diagnostics isn't saying anything on their website about testing people for free if they participate in the study. How did you know about it?

I was also tested in the Cooperative study. That study is now closed, they did not ever advertise that, they collected samples from some connections they had with PWC and also from a patient association they worked with that had banked blood samples of PWC. I have been told they will submit a report for rapid publication soon.

 

[_Kim_]

I was also tested in the Cooperative study. That study is now closed, they did not ever advertise that, they collected samples from some connections they had with PWC and also from a patient association they worked with that had banked blood samples of PWC. I have been told they will submit a report for rapid publication soon.

Kurt, you mentioned that you'd heard back channel that XMRV replication was not working out. From that, and this rapid publication report that you'd been told about, can I assume that CD has not found XMRV in those that they've tested? If this is so, then are you of the mind that VIPdx is getting (and reporting to patients) false positives?

 

[Cort]

I too wish to test altho honestly I've done quite well over the years with doing Amygdala Retraining and meditation/mindfulness; its slowing turning down that overstimulated state. I'm more at ease, my MCS is reduced and my energy is better. Its very slow for me - I don't do either of those things very well - but its definitely worked over time and I expect it to continue paying off more and more. It could be that I could work myself out of this eventually. For me I feel its about turning down that motor - and allowing the body to heal itself.

Still a retrovirus - anything like that - is something the scientific community can really focus on and it will bring a flood of money and research into this disease.

I did hear that one doctor, using the VIP dx test, got 11 negatives, no positives. Its definitely muddy waters right now with the different tests, different doctors possibly diagnosing CFS differently etc. It'll take some time for us to really get down to the bottom of this. (the original post had Cooperative Diagnostics - but it was VIP dx)

 

[rebecca1995]

PCR sequence

Does anyone know if CD is PCR-ing a different sequence than VIP does?

I'm curious if they took positive samples from the WPI to test their PCR.

 

[Marylib]

Patient on Oz

Hey Parismountain,

I got the impression, from what she said, that she was working - not in a position to not work was more what she seemed to say, but it wasn't clear - but she certainly was not one of the patients absolutely unable to function - yet, maybe - so the point you make about testing and functioning is a good one.

I think it is possible, from what I saw her post once, that Gina has gone through times of being quite sick indeed.

(Sorry this was from ages ago. Just now trying to catch up on reading and I thought this might still be of interest to someone.)

 

[cfs since 1998]

I did hear that one doctor, using the CD test, got 11 negatives, no positives. Its definitely muddy waters right now with the different tests, different doctors possibly diagnosing CFS differently etc. It'll take some time for us to really get down to the bottom of this.

Pardon me for saying so but it seems like the Coop. Diagnostics tests is garbage. There hasn't even been a rumor of a single person being positive with that test.