XMRV Positive? What are your symptoms/medical history?

leaves

Senior Member
Messages
1,193
Likes
28
This thread evolved into the creation of a BIG survey. It's still under construction, but you can try the sample version (even if you haven't been tested or tested negative) and give us feedback.

XRMV POSITIVE SURVEY



Hi
Just got my xmrv test results. Positive for culture tests. I got tested at VIP labs.


Thought it would be useful to have a thread on the profiles of those that have tested positive, their background, symptoms and most effective treatments.
Of course the profiles of those that tested negative are interesting too. Maybe its an idea to make another thread for the profiles of the people that tested negative rather than put them here, this to make everything a bit more comprehensible for the fogged.

So here it goes

I am originally from Western Europe (the continent) and have had symptoms since birth am now well into my twenties. Mild to moderate cfs, mainly energy and cognitive and endocrinological (long term amonorrhea). Mother and maternal grandmother have similar symptoms, excluding the fatigue. Did not get tested for other systemic viral or bacterial infections. Have had gastro infections. Do well with moderate exercise (running) and gluten caseine nightshade grain free diet. Ill add more info later, have to think about this. If people have questions, post them and I'll try to answer them over the weekend.
Take care all.
 

Martlet

Senior Member
Messages
1,837
Likes
5
Location
Near St Louis, MO
I have not yet been tested. Waiting for it to get cheaper and more accurate. But I think this is a great idea. I was talking about this very thing with my husband yesterday, on the way to the vet, but forgot all about it.
 

Abraxas

Senior Member
Messages
129
Likes
1
Hi leaves, thanks for posting your results here and I hope they might begin to shed some light on your illness. Were you tested by VIP Dx?

A thread for the profiles of people testing positive sounds like a good idea. Equally, the same for people testing negative might be useful too? It would be interesting to see if there are any common factors in either group, although I suspect it might be difficult to distinguish them.
 

KC22

Senior Member
Messages
161
Likes
3
Location
Ohio
Hi Leaves,

Have you been tested for any of the infections: EBV, HHV6, CMV, Lyme, Mycoplasma, etc. Thanks
 

shannah

Senior Member
Messages
1,416
Likes
1,720
If people who test positive (also negative) are posting profiles, it might also be helpful to know what side of the pond they're on.
 
Messages
61
Likes
6
Leaves... thank you for posting. I have not been tested as yet, but may do so when they get the VIP-Dx site back up. I also believe that I have had this since birth... at least as long as I can remember anyway. And I do believe that it is genetic in my case as there are other family members with symptoms. I had really wondered if someone who had symptoms since birth would test positive. Thank you for letting us know that it can happen, and for being brave enough to share.
 
K

_Kim_

Guest
There is some interest in adding a poll to this thread. What criteria should be on it (up to 10 options)?
 

Sushi

Moderation Resource Albuquerque
Messages
17,062
Likes
26,420
Location
Albuquerque
There is some interest in adding a poll to this thread. What criteria should be on it (up to 10 options)?
Hi Kim,

A poll would be interesting, though it is so hard to come up with ones that cover all the bases. I have an "uncovered base:" I have tested positive but not with a lab test. I am seeing a doctor who used autonomic response testing and direct resonance testing against a sample of XMRV in a vial. These methods have been used by Drs. Klinghardt and Cowden.

I know that many will consider this "fringe" and truly you need a very experienced practitioner to do this kind of testing well--mine is. So is there a way to include people like me in a poll? I not only tested positive but have been treated with herbal/natural anti-retrovirals, with what appears to be initial success. I know this is controversial, but my thoughts on it have been: "I am doing something and it is definitely not toxic." :innocent1:

Best wishes,
Sushi
 

gracenote

All shall be well . . .
Messages
1,537
Likes
74
Location
Santa Rosa, CA
simple questionnaire

There is some interest in adding a poll to this thread. What criteria should be on it (up to 10 options)?
What about a simple set of questions posted on the first page of the thread that those testing positive can answer.

1. What have you been "officially" diagnosed with?
2. How many years have you been sick?
3. Was it sudden onset or gradual onset?
4. What level of disability are you on Bell's scale?
5. What are your 3 to 5 worst symptoms?
6. Have you had the same symptoms throughout your illness or have they shifted? Please explain.
7. What treatments (if any) have been helpful to you?
8. What treatments (if any) were useless or made you worse?
9. etc. etc.

These are just some quick thoughts. I would love someone else to contribute. Maybe make it easier so that it isn't overwhelming? I personally dislike answering questionnaires but I would love to have this info.
 

flybro

Senior Member
Messages
706
Likes
225
Location
pluto
1. What have you been "officially" diagnosed with?


2. How many years have you been sick?


3. Was it sudden onset or gradual onset?


4. What level of disability are you on Bell's scale?


5. What are your 3 to 5 worst symptoms?


6. Have you had the same symptoms throughout your illness or have they shifted? Please explain.


7. What treatments (if any) have been helpful to you?


8. What treatments (if any) were useless or made you worse?


9. etc. etc.

Can we sticky a formatted version of gracenotes questions, so poster can 'reply with quote', and then just fill in the spaces?
 

gracenote

All shall be well . . .
Messages
1,537
Likes
74
Location
Santa Rosa, CA
more questions for a simple questionnaire

On another thread (different forum?) Advocate asked some additional great questions.

From Advocate: I think we are missing the boat on this forum. There are now 12 people who have said in the poll that they are xmrv positive. Plus there's a little girl with autism whose mother might participate.

I'm losing interested in whether people fit this criteria or that criteria. I'm losing interest in whether a collection of symptoms is called ME or CFS or ME/CFS or...

How can we find out for ourselves what xmrv-positive people have in common? For example, how many of them have orthostatic intolerance? Wide symptom exacerbation caused by physical exertion? By mental exertion? RnaseL results? NK cell dysfunction? On and on.
 

hensue

Senior Member
Messages
269
Likes
1
This sounds great! We need to know what we have in common if we test positive. This is an excellant idea!
 
K

_Kim_

Guest
Keep the ideas coming. I'll be gone for a few hours, but when I return, I'll compile the questions (I agree gracenote - better than a poll) and edit the first post to include them.
 

Advocate

Senior Member
Messages
528
Likes
88
Location
U.S.A.
There is some interest in adding a poll to this thread. What criteria should be on it (up to 10 options)?
Hi Kim,

Maybe it should be three polls: one each for signs, symptoms, and lab tests. Or maybe more than three, for a better chance of learning what symptoms xmrv-positive people hold in common. Or maybe it shouldn't be a poll at all, at first, until more is known about which symptoms to include.

In any case, I hope a dysautonomia choice is included in some form.

Incidentally, thanks for moving posts around and making the strings more orderly.
 

julius

Watchoo lookin' at?
Messages
785
Likes
5
Location
Canada
I'd be interested in seeing how positives would rate their cognitive/mental symptoms and their physical symptoms.
I have gotten the feeling that the subjects DR. Peterson chose for the study had an exceptionally high level of cognitive dysfunction.
Wondering if XMRV might be infecting nervous tissue as has been suggested. And if so, maybe XMRV positives would make up a subgroup with particularly high cog. problems.


cog/mental
brain fog 1-10
memory problems 1-10
sensory sensitivity 1-10
emotional lability 1-10

physical (all 1-10 as well)
fatigue
pain
inflammation
etc
 

Summer

Senior Member
Messages
175
Likes
0
I am XMRV+ and I think I can make this short and sweet. I have most of the symptoms on this list plus some:

CFS Symptom List

And from a post today from someone listening to Dr. Bateman's webinar, this fits me to a "T":

Retroviruses cause:

weakness
wasting
ataxia (imbalanced gait or walk)
dementia
neuropathy (damage to nerves)
 

natasa778

Senior Member
Messages
1,774
Likes
2,447
Retroviruses cause:

weakness
wasting
ataxia (imbalanced gait or walk)
dementia
neuropathy (damage to nerves)
add autism (most likely down to combo of brain fog, anxiety, muscle dysfunction+neuropathy ...)
 

natasa778

Senior Member
Messages
1,774
Likes
2,447
forgot to mention auditory processing dysfunction - is that commonly experienced in CFS/ME? are sensitivities to sound and/or light common?
 

Dr. Yes

Shame on You
Messages
868
Likes
45
Sensitivities to sound and light are very common, esp. in the more severe neurological end of the spectrum (more "ME" than CDC-defined "CFS").

Don't know if this has been mentioned yet, but I'd also really like to know whether those who've tested positive had an acute onset or a gradual one (or some combination), whether the onset seemed to be related to infections or to something else (such as toxic exposure), and what their tests (if they had any) for other pathogens have been like over time (HHV6, EBV, CMV, Mycoplasma, Borrelia, etc.).