XMRV Positive? What are your symptoms/medical history?

[_Kim_]

(Did you get sick immediately? In a few days? Within two weeks?)

Hepatitis B
Seasonal influenza
H1N1
MMR (Measles, Mumps, Rubella)
Japanese encephalitis
Meningitis
Polio
Typhoid
Tetanus

Other
==============

I suggest we add the vaccinations in red. They were were given to me by a patient who received multiple vaccinations in preparation for a trip to India, and became severely ill within two weeks.

As I go through all of your posts, I expect to find additional vaccinations.

Vaccinations in red have been added.

 

[starryeyes]

Awesome Job Kim!! This Survey looks fantastic. What great participation we have here. :victory::sofa:

 

[_Kim_]

One concern about the pathogen test section... This is where we may need to be more specific so that this survey has stronger value as a clinical research tool (it already has a lot). Specifically, just saying you test positive to EBV or HHV6 doesn't make clear if that was IgM or just IgG; that's a big difference to doctors/ researchers, most of whom don't take IgG seriously since 90% of the population has positive IgG to EBV and HHV6. (I don't think there's any way to use the survey to determine whether people were IgG high normal or not; "inconclusive" wouldn't fit unless it was right at the border between positive and negative. For now they could be encouraged to write that information in, I guess.) This is not necessary for the other pathogens, which are far less common than those two viruses (I'll have to double-check on CMV, though).

Another issue is when people were positive, and if they since tested negative (or if positive/negative have fluctuated). That would be of interest because of the theories of low-grade viral (or other) activity or even latency, which so many doctors dismiss too easily (especially in Lyme, but even in herpesviruses). No idea how to work that one into the survey, either...

I changed the column values - does this make sense?

Choose: [Positive IgM] [High levels of antibodies IgG out of range] [Past infection] [Negative] [Inconclusive] [Not tested]

 

[Chris]

Yikes!

Kim and gang--I take a few days off (more or less) and return to find this! You guys are unbelievable! I think I will have to get tested just so I can play too!
But in the last version I looked at (I omitted a few pages, someone may already have caught this) in Section 28 you have Hypertension (I am one of the few who have this) but not Hypotension, which I think many of you do have. So please put this in, if not already done. But wow! WOW! Chris

 

[_Kim_]

Entamoeba fragilis...

Entamoeba species added.

 

[_Kim_]

Sorry but i just keep thinking about nee symptoms; white spots on finger nails, excess saliva at night. I dont know if these symptoms are important, i just wanted to mention them.

Added:
Hypersalivation
Dry mouth
Metallic taste

Don't know where to put white spots on fingernails.

 

[_Kim_]

I agree with the age thing as like I've said before I'd really like to know if the childhood onset folk who never recovered are more likely to be XMRV+.


On another thought, should we be told to exclude symptoms which are side effects of medications and only include illness symptoms. For example, I gained weight and have a dry mouth because of being on amitriptyline. Oh, and the amitripty-dreams, vivid as heck.

Is there a line that we could put in the Welcome message that would say this?

 

[_Kim_]

Kim and gang--I take a few days off (more or less) and return to find this! You guys are unbelievable! I think I will have to get tested just so I can play too!
But in the last version I looked at (I omitted a few pages, someone may already have caught this) in Section 28 you have Hypertension (I am one of the few who have this) but not Hypotension, which I think many of you do have. So please put this in, if not already done. But wow! WOW! Chris

Hey Chris! We're making 3 versions so that everyone can play. You'll be able to take the -Not Tested- version.

I added Hypotension. Thx.

 

[_Kim_]

Things shifted for me with pregnancy, and shifted again at peri-menopause, both times for the worse. Dr. Mikovits mentioned age 12 or 13 for boys and girls, if I remember right. It looks like hormonal shifts have a big impact and may be a trigger.

Also, chemical exposures.

Some have mentioned highly stressful situations as a trigger.

Added puberty, menopause, and chemical exposure, and struck by lightening

 

[_Kim_]

I dont really know the trigger, please make that anoption too. Also i have appetite distubances; sometimes i amjust hungry all The time....

Added -Loss of appetite- and -excessive hunger-

 

[_Kim_]

.No wrinkled pads on my hands but a deterioration in the finger pads and finger prints (as reported early on by Cheney)

A couple of things stick out from other contributions

Osteoporosis in family (unusual, severe and young)
Crimson crescents - yes please add this

I've been through the survey and would like to add


3.

Daytime urinary frequency (total lack of daytime urine)

worsening of symptoms under increased stress - separate physical or emotional as I react differently




5.

My current Autonomic Nervous System symptoms include

sweating - none. I stopped sweating altogether (except with acute infections, no sweat in response to exercise, sauna etc)


6. separate flu like and hangover please. They are different and I have them at different times

8
Hyper mobile joints

10.

Sensation of extreme heat in limbs but no sweating

Alert at night but not insomnia (i.e. a night owl)

11 - all over nerve pain

12

Sulphur items and sulphur foods (i.e. broccoli)

17

QEEG
Babinski's sign
Reflex brisk or abnormal
Poor mans Tilt table test


Other
======

Were you part of a recorded epidemic?

Early cancer deaths

Added Daytime urinary frequency, deterioration of finger pads, inability to perspire, hypermobility, alert not insomnia, sulfur foods, neurological tests

Made 2 questions - separate flu feeling from hangover feeling

 

[_Kim_]

diagnosis? Make sure these are diagnosis by doctor not just ourselves. Just something to point out.

I added dx. by MD to the question.

 

[_Kim_]

Yeah I like the idea of including self diagnosis. Also, For me celiac has been ruled out but blood test do indicate intolerance, maybe good to point out that only celiac is meant. A while back the no sweating was suggested, I have that too although before I had excessive sweating, so that changed over time.
*checking my finger prints....*. Yep still there
I guess I have to postpone my criminal career a bit

THe diagnoses question now gives the option for Physician or Self Diagnosis

 

[julius]

Kim, could you add a link to the poll in the title of this thread, i have to keep looking through the thread to find links,

 

[_Kim_]

Kim, could you add a link to the poll in the title of this thread, i have to keep looking through the thread to find links,

You bet!!

I'm all but caught up with the suggestions. I need to take a break.

Here's the XMRV POSITIVE SURVEY (BETA)

ETA: I still haven't added the suggestions that were written in the OTHER SYMPTOMS boxes when you took the survey. Hang in there.

 

[julius]

re: medication side effects

in the welcome you could add something like this;

For this survey, consider a symptom as Current if it has occured within the last three months. Past symptoms are any that you experienced prior to three months ago. Symptom will not refer to side effects of medication, or symptoms related to a transient infection (ie: nausea that is related specifically to a 24 hr flu)

 

[_Kim_]

re: medication side effects

in the welcome you could add something like this;

For this survey, consider a symptom as Current if it has occured within the last three months. Past symptoms are any that you experienced prior to three months ago. Symptom will not refer to side effects of medication, or symptoms related to a transient infection (ie: nausea that is related specifically to a 24 hr flu)

Bravo julius, you are coming through today. This is so helpful!!

 

[julius]

Good to hear,

I actually have Asperger syndrome as well as cfs. So i often don't know if I'm being a help or a hindrance, I don't pick up on the 'cues'. I'm glad to hear that i'm helping in this case.

 

[_Kim_]

Good to hear,

I actually have Asperger syndrome as well as cfs. So i often don't know if I'm being a help or a hindrance, I don't pick up on the 'cues'. I'm glad to hear that i'm helping in this case.

Thanks for letting us know about your Aspie-ness. You've been tremendously helpful with this survey - keeping it pumping along when I start to fizzle out.

 

[_Kim_]

New thread

I'm going to start a new thread to get feedback from the general population here. I will eventually merge it with this thread, but I wanted to have a fresh start with making changes to the current version.