XMRV Positive? What are your symptoms/medical history?

In post #93, island finn wrote, "I find that the gap between moderate and severe is huge. Is it possible, desirable to put an in-between category like 'strong'?"

Island Finn, I think we should go with the David Bell survey for now, just as it is. It is probably the best of the questionnaires that has been used in other research studies. I agree that it is far from perfect. At the lower end, for example, the severity is not stretched out enough. People who are near death are lumped in with people who are not bedridden all the time.

I should probably write to Dr. Bell to ask him if we can use it.

I'd love for this group to develop a new questionnaire, but if we take time to do that now we'll never get this XMRV survey live.

 

In post #93, island finn asked, "and finally - what about internet security. How easy would it be for someone to track how an individual fills in the survey?"

I'm clueless. Anyone? Kim chose kwiksurveys for this first XMRV survey, so that we can get it up relatively quickly. For our second one, "Since" thinks we could integrate it into the forum site. If that happens, Kim responded that she (and Cort?) would have access to IP information, but nothing else. (Did I get that right?)

 

I put in the hummingbird questionnaires instead of Dr Bell's.

 

I also went to India multiple times and was also given several smallpox boosters (this was way back), yellow fever, & gamma globulin. Also took anti-malarials while there!:ashamed:

Also, many of these vaccinations were given after I was already in the sick zone, so weren't exactly causative but more what Judy Mikovits called cumulative insults.

Sushi

 

And...along with osteoporosis comes an association with Ehlers-Danlos type 3 or hypermobility syndrome. As I have been diagnosed at various times with both dysautonomia (Tilt table), and CFS (diagnostic criteria) I am aware of a lot of the issues that get highlighted by the dysautonomia specialists and somehow largely missed by the CFS specialists, even though a good number of CFS patients are going to have them...if someone were to check.

Hypermobility syndrome is one of them. Often pairs with mitral valve prolapse. The most recognized dysautonomia specialist, (Dr. Blair Grubb) says that as soon as many of his patients walk in the door he says, "Ehlers-Danlos primary, OI secondary." He can see it just from the body type and movement.

Another unfortunately common one in the dysautonomia contingent is gastroparesis (someone mentioned this) or slow gastric emptying. Has to do with vagus nerve screw-ups. Can wreck your life. I'm wondering if people here have it but don't know it as it is often just seen as gastric distress. It can be tested for.

Sorry to mess up this great project with more suggestions. Maybe we should add a question about post survey-making malaise! Not nearly as interesting as "post orgasmic" though--POW!

Sushi

 

I have had so many possible trigger points, and after each one there has been a period of illness, a period of odd symptoms followed by recovery.

Looking back over my life I tend to think I was born with soemthing wrong with me, possibly XMRV.

However the last thing that hit me and hasn't gone away was a tetanus jab followed by a bad chest infection. I was experienceing nights sweats prior to the jab. I had also changed from office work to gardening (hence the tetanus, I was being sensible:Retro mad and moved to a different part of the country.

I was also ill after a holiday in Malta, sudden skin allergies, and a hives like rash when I went in the sun. A friend had taken me on holiday because I had been so knackered for so long.

I've had a a couple of head injuries as well, a 2 and half inch fracture of the skull when I was 9ish.

A dreadful infection after a hysterectomy.

Plus many other possabilities, but I can't say exactly when it started.

Its more like it was always there, but it became impossible after the tentanus.


Sorry for the ramble I'm sorta thinking out loud.

Any idea whow I would answer the onset question.

Cheers

 

Additional pathogens

Dr. Yes noticed that our pathogen list needs work. I think we should probably add the ones I've noted in red. Any others? I'll go back through the thread and look for more.

My results for the following pathogen tests are:

Babesia microti
Bartonella henselae
Blastocystis hominis
Borrelia afzelii
Borrelia burgdorferei
Borrelia garinii
Chlamydia pneumoniae
Cytomegalovirus (CMV)
Endolimax nana trophozoites
Entamoeba fragilis
Enteroviruses
Epstein Barr Virus (EBV)
Human granulocytic anaplasmosis (HGA) (formerly called Erlichia)
Human Herpes Virus 6A (HHV6A)
Human Herpes Virus 6B (HHV6B)
[Lyme - REMOVE]
Mycoplasma species
Parvovirus B19
Toxoplasmosis

That green color is wild!

 

Entamoeba fragilis...

 

My age is:

I think we need to ask for the exact year of birth. I started thinking about that when I noticed that a lot of the symptoms we list are age-related; any older person could have them.

I'd like to know if young people who are XMRV+ are getting these old people’s symptoms, old people's diseases.

I suggest that the year 1930 be at the top of the list. Last night Judy Mikovits said that the oldest person they tested was 75, so 1930 would give us a five-year cushion.

I suggest the year 2008 for the end of the list. This would allow for XMRV+ children with autism to be included.

I know nothing about statistics, but I’m guessing that the people who work with statistics would be happy to have the exact year of birth.

Kim, is there a way that this could be done? In columns, maybe? Or one of those drop-down-and-stay lists?

20.
I was born in the year:

1930
1931
1932…

(all years in between)

…2007
2008

Currently this is what we have up:

20.
My age is:

Under 12 years of age
12-20 years old
21-30 years old
31-40 years old
41-50 years old
51-60 years old
71-70 years old
71-80 years old
Over 80 years old

 

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.

 

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.

 

What do we mean by "results"? Positive IGG antibodies? "High" IGG? Only elevated IGM? PCR?

 

Hi Nina,

The choices are Positive, Negative, Inconclusive and Not Tested.

The question now reads, "My results for the following pathogen tests are:

Maybe the question should be phrased differently. How about "My results for the following pathogen tests, according to the standards of the testing lab, are:"

I know this question doesn't get down to the level of detail some of us might like to see, but it is still more specific than, for example, "Lyme Disease."

The questionnaire does try to get detail on tests related to XMRV--which lab, which type of test.

 

I just looked at the hummingbird scales again. Gosh, they are wordy!

But I think they do separate categories fairly well and they take care of a couple of my problems with the Bell scale.

1) They give weight to the the symptoms of people who are most severely ill, recognizing that "the overhelming majority of people with M.E. are not mildly affected."

2) And they recognize that it's pretty hard to pack different aspects of your illness into a single scale, which the Bell scale attempts.

What do other people think?

 

XMRV +

I'm happy with the Bell scale but I know that other people have problems with it.

The Hummingbird one(s) gave me more appropriate responses that catagorised my functioning better

 

Hi Sushi, I've had the gastroparesis problem on and off for most of the time I've been ill - I always thought it was just down to an imbalance in flora eg caused by candida, parasites etc, or neurotransmitter deficiencies eg serotonin tho I guess with the gut & brain so interlinked we can get into a vicious circle of symptoms cant we? I've had it quite bad the last few days too - I think this time it was caused by the stress of detox and perhaps mineral deficiency eg magnesium and maybe a hormone deficiency too like cortisol & thyroid lack of either of which can cause lack of peristalsis and constipation. My gut feels like it just completely shuts down with nothing moving through at all and I feel very full. Consequently I get really constipated too. I wonder if it is due to vagus nerve dysfunction with me sometimes and on this occasion too as my vocal chords have weakened the last few days too coincidentally which is another symptom of VN dysfunction. Also I have problems with swallowing too and things get stuck in my throat which is another symptom. Anyway thanks for pointing it out.

Also well done and thanks to everyone putting energy into working on the questionnaire!!

 

What about sunburn easily:Retro mad:? Is this a problem for anyone else.

Also someone mentioned moles all over the body...I have that...it sounds like quite a few of us do.

Keep it up guys...i'm so excited to see the results.

 

Kim, did you say that qwiksurveys will allow us to complete part of the survey, quit for a while, and then go back at another time to finish--without forgetting who we are and without trashing our unfinished survey?

 

I’m going through all your suggestions to make sure we don’t miss anything. Do we have this question yet? Lucie suggested something like it in Post #178.

Please edit, add, subtract.

Do we need to qualify this question in any way--e.g., by asking if the trigger was just before the initial onset, or did it trigger rapid progression of existing disease? Someone suggested we need an "I don't know" option.

I had the following possible triggers:

Anaphylaxis
Bacterial infection
Blood transfusion
Car Accident
Chemical exposure
Concussion
Fungal infection
Hormonal shift (puberty, pregnancy, menopause)
Immunizations
Parasites
Surgery
Viral infection

 

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.