XMRV Positive? What are your symptoms/medical history?

[leaves]

I just did a "trial take" of the survey--WOW! Great job team!

The only one I stumbled on was: # 27 " I became ill after getting vaccinated for...." I think for many of us, (certainly me) I was already ill but multiple vaccinations (a lot of travel, working in a hospital) exacerbated my illness. Is there any way we could include this scenario?

Thanks,
Sushi

Yeah great job Advocate and Kim !!! Similar to Sushi I never noticed a causal effect of the vaccination, just always felt bad, and the increase of symptoms is pretty mysterious to me. Could very well be due to vaccinations, but not an obvious effect for me at least.

 

[_Kim_]

I just did a "trial take" of the survey--WOW! Great job team!

The only one I stumbled on was: # 27 " I became ill after getting vaccinated for...." I think for many of us, (certainly me) I was already ill but multiple vaccinations (a lot of travel, working in a hospital) exacerbated my illness. Is there any way we could include this scenario?

Thanks,
Sushi

Thanks for looking that over Sushi. I'll work on that question - I see what you mean.

I think we'll leave the current survey up, as is, over the weekend.

I have a request.

At the bottom of each question, there is a text box for you to enter [Other Symptoms]. Some of you who took the survey took the time to enter extra symptoms that we missed. I will add them to the list. If there are others that you can think of, please enter them there. This makes it very easy for me to update the survey.

Here's a preview:

Question #6 was answered by 5 survey-takers. Look at how many severe PEM symptoms (level 5) were checked off!!

 

[FernRhizome]

Oh this survey looks fabulous! I can't wait to take it "officially"....I didn't see osteoporosis listed. Would it be possible to list osteoporosis? And if someone clicks "yes" for it could it then also ask for spine t-score amount and age? Also you might consider adding "gastroparesis" to the list of gut symptoms. And was mitochondrial disease listed? Some of us have had muscle biopsies for mito disease. What great work!!! Thanks Kim and Advocate!

Also I have a symptom that when I go to bed at night my muscles often won't relax for two hours.....does anyone else have that? It's a hard thing to describe in a few words! ~FernRhizome

 

[FernRhizome]

I just took the survey! Great work! How did you do this so fast!!!??? I added some additions but a few more things that there wasn't a particular place to put might be the following: Specify what types of cancers folks have had, add asperger's separately from autism, I was surprised not to see Dr. Bell's scale used for disability, perhaps make a spot for other genetic findings? for instance I discovered that I have carrier status for gaucher's disease. Maybe that will turn out to be a predisposition? So perhaps ask if folks have any known gentic predispositons. Also I am missing a P450 liver enzyme. That's another good genetics question. Maybe a special section for genetics questions, known mutations or single rather than paired genes, or carrier status. Also there is now a connection between strep throat reactivation and OCD...wonder if that will turn out to be XMRV related? Can't wait to take the final survey! This is a fantastic forum! Great thread! ~FernRhizome

 

[FernRhizome]

Also, if at all possible, when OSTEOPOROSIS gets added to the survey could we ask people what their spine t-score is???? Such as -1, -2, -3, -4 or -5????? And age correlation would be great. I hope this is possible!!!! I've been losing 10% of my bone a year and could be no longer around before a treatment is available for XMRV in a year....!

 

[_Kim_]

Also, if at all possible, when OSTEOPOROSIS gets added to the survey could we ask people what their spine t-score is???? Such as -1, -2, -3, -4 or -5????? And age correlation would be great. I hope this is possible!!!! I've been losing 10% of my bone a year and could be no longer around before a treatment is available for XMRV in a year....!

Fern, thanks for the great feedback. We'll definitely incorporate your ideas into the survey.

I honestly don't know how we did this so fast. Everyone started listing things they wanted to see on it and Advocate compiled a big list. I found a free survey maker and loaded in the list. From there, we just kept adding in the new suggestions.

I'm a little surveyed out at the moment, so it'll be good to let it stew for a few days as we continue to get more feedback.

 

[anne]

Bravo, you guys. Really well done. Can't wait to see it grow. Thanks for all your hard work.

Maybe add HHV-7 to the viruses?

 

[_Kim_]

Bravo, you guys. Really well done. Can't wait to see it grow. Thanks for all your hard work.

Maybe add HHV-7 to the viruses?

I'm glad you like it anne. HHV7 is a good one to add.

~~~~~~~~~~~~~~~~~~~~~~~~~

Now that we have some results, I downloaded them into Excel. Some bad news:

XMRV+ patients experience POWS (Post-Orgasmic Worsening of Symptoms)

The 5's = severity (0-5)

 

[Dr. Yes]

Survey's looking great! And the results have been interesting already.. most bear out what ME/CFS folks have been saying for years - note, for e.g. the 100% response for severe problems with sensory/cognitive 'overload'!

A couple drowsy points before I conk out...

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...

Also - 'Lyme' is Borrelia, isn't it??

Question 7 - Again, neurologists, etc will call us on the 'temporary paralysis' and the meaning of temporary immobilization. By paralysis, do people mean the real medical definition of paralysis, which means not only being totally unable to voluntarily move a given body part, but usually also means having no involuntary movement there either, i.e. if a doctor hit your reflex point there would be no response? I'd be surprised if that's really what the respondents meant. And I'm not sure what immobilization means; if different from paralysis, does it just mean too exhausted or weak to move at all? We'll want to make sure those terms are clarified. (Especially paralysis).

By the way, Question 25 looks really interesting so far.. 3 out 4 people have parents with the ME/CFS, 1 out of 4 has a sibling with it too... 2 cases of autism in family members too... :worried:


ETA - "POWS"?! (Great acronym!) Tho I was wondering; are people separating that from post-sexertional malaise?

 

[_Kim_]

ETA - "POWS"?! (Great acronym!) Tho I was wondering; are people separating that from post-sexertional malaise?

I think they are definitely two different symptoms.

A good romp might give you :In bed: post-sexertional malaise :Retro mad:

but you can get POWS even from turtle-sex :tongue:

 

[gracenote]

From Dr. Yes: Also - 'Lyme' is Borrelia, isn't it??

Just a quick answer. I think it can get more complicated than this.

Lyme disease is the syndrome caused by infection by the Borrelia (Lyme) spirochete. Many use the term "Lyme disease" to refer to symptoms caused by other tick-borne infections co-transmitted to humans along with Borrelia. Two examples of these "co-infections" are Babesia and Ehrlichia.

 

[Dr. Yes]

Yes, but the ELISA and Western Blot tests are only for Borrelia; you have to order Babesia, etc. tests separately...

(Why am I still awake? )

 

[leelaplay]

I think they are definitely two different symptoms.

A good romp might give you :In bed: post-sexertional malaise :Retro mad:

but you can get POWS even from turtle-sex :tongue:

oi - Kim and Dr Yes - you leave me breatheless - from laughing.

I wonder - does video interuptus fit somewhere in here?

Well - I'm so glad I'm an ME/CFS-induced dyslexic - I'll take PSM over PMS anyday:Retro wink:

And if anyone is going to throw batman allusions around me - I'll take POWS

Time for bed. Oh - I mean _ um - well - sweet dreams

 

[Adam]

I had a viral onset (very ill for about 6 months) followed by a 3 to 4 month period of remission, another 6 months of viruses and gastro episodes, before disabilty set in, but...about a year before viral onset had a one-off neuroligical episode - lost use of legs for about 2 hours. Scared the %$% out of me at the time, but thought it was probably just a trapped nerve or something) little did I know. 13 years later and my gait is still the same - like someone is pulling strings. People think I've been in a car crash or got MS or that I'm drunk, so always walk (which is not that often) with a stick to keep me in a straight line. I'd like to know when UK patients imagine we will get XMRV test on NHS - assuming Reno studies pan out? My guess is that Wessely and Co will continue to discredit US findings and be successful for years to come. Hope I'm wrong. The poll would be good though. If we could get someone who can be objective about the findings to exptrapolate the info we might get a better picture of what is going on.

 

[coxy]

i've just thought of something that all 3 of us ME ER'S in our house have been diagnosed with GILBERTS SYNDROME/DISEASE, my dad also has it but no ME. It's something to do with the liver, and the doctors IN UK have definately said there are more patients with this syndrome who have ME, they don't know why though. Should it be in the survey?

 

[Countrygirl]

Gilbert's syndrome/disease.

i've just thought of something that all 3 of us ME ER'S in our house have been diagnosed with GILBERTS SYNDROME/DISEASE, my dad also has it but no ME. It's something to do with the liver, and the doctors IN UK have definately said there are more patients with this syndrome who have ME, they don't know why though. Should it be in the survey?[/

QUOTE]

Absolutely right Coxy. I remember, (I rarely get to say that so I'll say it again) I remember Dr Charles Shepherd saying sometime in the Dark Ages that there was quite a significant correlation (?16%) between Gilbert's and M.E. There are conflicting reports about the symptoms of this problem. Doctors say it is more-or-less symptom free, apart from mild jaundice, but patients say that they experience a number of nasties, including fatigue.

I have it too.

 

[ukxmrv]

XMRV+

My own family has a history of severe and widespread Osteoporsis so glad to hear that mentioned. Also early cancers and early deaths from cancer (i.e. 30s, 40s).

One of the first symptoms I noticed after the viral attack that made me ill was that I could no longer "shiver". This may be to do with the temperature dysregulation.

In my family we have male pattern badlness for the men, plus very oily skin and hair for the women (all with ME or CFS). This may be relevant due to the testosterone link mentioned in another link I saw.

Recurrent miscarrige and unexplained infertility for the women in my family with ME (and myself).

MTHFR gene mutation in family members

 

[coxy]

first time i've heard infertility mentioned. i had to have fertility drugs then injectionsd for a few years before a got pregnant, 1st was a miscarriage. my family has always gone basck to those days and asked if all the fertility treatment could of caused so much me/cfs in our family

XMRV+

My own family has a history of severe and widespread Osteoporsis so glad to hear that mentioned. Also early cancers and early deaths from cancer (i.e. 30s, 40s).

One of the first symptoms I noticed after the viral attack that made me ill was that I could no longer "shiver". This may be to do with the temperature dysregulation.

In my family we have male pattern badlness for the men, plus very oily skin and hair for the women (all with ME or CFS). This may be relevant due to the testosterone link mentioned in another link I saw.

Recurrent miscarrige and unexplained infertility for the women in my family with ME (and myself).

MTHFR gene mutation in family members

 

[Advocate]

Hi all,

I have typed the entire survey into Word so that I can reproduce parts of it in this string. Then we can discuss what has been added, what needs to be reorganized and what needs to be researched. I selected a white background for the survey because it was easier for me to read, but we should change it back to whatever color you all think is best.

I'm sure it will take a few more days for us to finish this developing this survey. So please be patient.

For starters, here's a key to the numbered sections that we have so far--as of yesterday. I assume that if we insert other questions, or sections, that the numbers will shift.

XMRV Positive? What are your symptoms/medical history?

Please complete this survey only if you have tested positive for XMRV (either by PCR or Culture).

Brought to you by the members of the Phoenix Rising Forums (I think Kim wrote this phrase. I love it!)

1. My XMRV test was done by:
2. CURRENTLY, I experience:
3. My CURRENT cognitive symptoms include:
4. My CURRENT Autonomic Nervous System symptoms include:
5. I CURRENTLY experience a worsening of these symptoms after exercise/exertion/activity?
6. When I experience a worsening of these symptoms after exercise/exertion/activity, the onset typically occurs:

(end of page 1)
=======================
7. I CURRENTLY experience these Neuromuscular symptoms:
8. I CURRENTLY have these gastrointestinal symptoms:
9. I CURRENTLY have these problems related to sleep:
10. CURRENTLY, my pain includes:
11. Since becoming ill, I have developed the following allergies, intolerances and/or sensitivities:
12. CURRENTLY, I am hypersensitive to:
13. I CURRENTLY have these cardiac symptoms:
14. I CURRENTLY experience sexual dysfunction, including:

(End of page 2)
=================================
15. My results for the following pathogen tests are:
16. Other tests I have taken:
17. I have been diagnosed with:

(End of page 3)
==========================
18. I rate my functional level based on Dr. Bell's Disability Scale:

(End of page 4)
=====================
19. I am: (Male, Female)
20. My age is:
21. My symptoms of ME/CFS came on as: (Acute, Gradual)
22. I have been sick:
23. I currently live in:
24. When I first became ill, I lived in?
25. I have relatives who are also ill with:
26. When I first became ill, I was working or spending time at or near:
27. I became ill after getting vaccinated for:
28. CURRENTLY, I am working or studying:
29. Over the past year, my symptoms have gotten:
30. The longest period of remission I had was:

(End of page 5)
===========================

 

[Advocate]

27. I became ill after getting vaccinated for: (Do we want to specify a time period?

(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.