Anyone here with POTS who is also XMRV positive?

[subtr4ct]

I am just wondering. My wife (she's the one who is sick, not me) has POTS, but we are still awaiting XMRV test kits. Knowing that many CFS sufferers have some form of orthostatic intolerance, but of differing types, I am suddenly wondering if XRMV-positive status is corresponding to some types of OI but not others. (BTW -- what ever happened to that survey that would elicit the varying symptoms and diagnoses of XMRV-positive people?)

The finding that XMRV may tend to take up residence in smooth muscle tissue makes me wonder if that could be why a POTS sufferer's peripheral (legs particularly) blood vessels mysteriously fail to contract properly, even as their nervous system is screaming (releasing lots of norepinephrine). I'll be very interested in the results of the Vanderbilt study.

Thanks in advance for all responses!

 

[anne]

Yes, I am. What is the Vanderbilt study?

 

[subtr4ct]

Vanderbilt study

Info on the Vanderbilt study can be found here. In her Santa Barbara seminar (sorry, no link handy), Judy Mikovitz indicated that WPI was working with Vanderbilt on this. By the way -- it sounds like you would qualify as a study subject. Thanks for you response!

 

[gracenote]

I'm also XMRV positive. I have no official diagnosis of POTS but I have trouble standing, even sitting, upright for long. Also, this has changed for the worse the longer I've been ill. Early on, this wasn't as much of a problem.

I think it's too early to try to make this connection. There is a high probability that ME/CFS patients testing negative for XMRV have received a false negative. And we still don't know what a positive diagnosis means. Not yet. Hopefully soon.

As far as I know, the survey is still being worked on.

 

[SunnyGal]

Same here, POTS and XMRV+. I don't have very severe POTS and the symptoms and severity fluctuate.

What types of different OI are there, btw? I've not heard about that.

Sunny

 

[subtr4ct]

What types of different OI are there, btw? I've not heard about that.

The main types I have heard of are Neurally-mediated Hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS). In the former, blood pressure drops upon standing, in the latter the heart rate rises upon standing. I think there are finer distinctions within the NMH category.

gracenote: do you know if you blood pressure or heart rate changes upon standing (or after prolonged standing)?

 

[SunnyGal]

Oh right. Okay, bit foggy today.

I actually have POTS and NMH. Isn't that special. :worried:

Sunny

 

[Navid]

Oh right. Okay, bit foggy today.

I actually have POTS and NMH. Isn't that special. :worried:

Sunny

i have what sunnygal has...both!!!!! my worse symptom.

ordered OI pants today...can't wait to rock that look at elementary school pick up.


sub: do you have to go to vanderbilt for study? very big trip from here.

lisag

 

[gracenote]

gracenote: do you know if you blood pressure or heart rate changes upon standing (or after prolonged standing)?

Heart rate goes up, blood pressure drops. Haven't done a "real" test for this, but yes.

 

[ANGELONDUTY]

hello all............& BLESSING'S

YES.......to XMRV + & POTS +
and sick as the dickins........0ver 20yrs w/ all the goodies

 

[subtr4ct]

sub: do you have to go to vanderbilt for study? very big trip from here.

Not clear. Also confusing is the fact that XMRV is not mentioned in the description of the research, even though CFS is mentioned throughout. This was indicated to be the WPI+Vanderbilt XMRV study in another thread on this forum, though. Confusing.

 

[Lesley]

I thought the XMRV testing was something they were adding on to their existing POTS study, which would be why it isn't mentioned. If so, you would have to go to Vanderbilt and participate in the POTS study. I think other researchers are doing the same thing - testing existing study subjects for XMRV.

 

[Navid]

Not clear. Also confusing is the fact that XMRV is not mentioned in the description of the research, even though CFS is mentioned throughout. This was indicated to be the WPI+Vanderbilt XMRV study in another thread on this forum, though. Confusing.

I thought the XMRV testing was something they were adding on to their existing POTS study, which would be why it isn't mentioned. If so, you would have to go to Vanderbilt and participate in the POTS study. I think other researchers are doing the same thing - testing existing study subjects for XMRV.

hi:

i wrote to vanderbilt yesterday...it is an inpatient study...so no go for me. i have an 8 y.o. kid here in berkeley, so can't be gone for extended periods of time.
this is what they sent me if anyone else is interested:


I am sorry to hear that you are unwell.

We do have research protocols studying OI/POTS. If you think that you might have this, then we would welcome your application to be considered for our inpatient research unit. Details of how to access this avenue are available at our website (link below). All of our research in this area involves our inpatient unit. While we may have outpatient studies in the future, currently all of our studies are inpatient based.

Most of our OI protocols require an increase in heart rate on standing of >30 beats per minute. This is in the absence of significant orthostatic hypotension (BP drop with standing). Our protocols involve some studies that characterize the autonomic nervous system and its physiology (intrinsic heart rate, blood volume, etc.) and others that look at heart rate & blood pressure responses to various medications. These are typically short-acting mechanistic medications. We do not have any protocols that deal with gastroparesis or other gut problems.

In order to properly determine whether you might be suitable for one or more of our protocols as part of an inpatient evaluation, we would appreciate it greatly if you would fill out the questionnaire from our website and fax it back to us. This will then reviewed by our research nurse and fellows to determine suitability. We are a little short staffed, so this review sometimes takes a few weeks.

The web page is at: www.mc.vanderbilt.edu/gcrc/adc <http://www.mc.vanderbilt.edu/gcrc/adc>. There is a Patient Information tab on the left hand margin.

If you are a study candidate (based on your information), then our research nurse will send you some detailed consent forms to look over prior to any planned research stay.

We look forward to hearing further from you.

Regards,

Satish Raj MD

 

[VillageLife]

i am seriously hoping that it turns out ....if you have a POTS patient ....that patient has XMRV. They have zero idea what causes POTS, apparently the only other people which get it are astronauts after they've been to space!

 

[subtr4ct]

They have zero idea what causes POTS

Indeed. Another "syndrome". I think "syndrome" is medical speak for "yeah, good luck with that".

 

[anne]

Indeed. Another "syndrome". I think "syndrome" is medical speak for "yeah, good luck with that".

Brilliant.

 

[tolduiwuzsic]

Shebacat, i'm heartbroken I thought that Vanderbilt letter was written especially for me and turns out they give one to all the girls BST how would one go about getting tested for POTS or XMRV if all you have is a GP?

 

[subtr4ct]

how would one go about getting tested for POTS or XMRV if all you have is a GP?

For POTS, you could ask for a referral to a neurologist, and they would do some fancy tilt table testing. But honestly, it's not all that complicated. An fine approach would be to buy a Polar watch (example), and monitor your heart rate over the course of several days. If your standing (but not especially exerting yourself) heart rate tends to be greater than your resting, supine (laying down) heart rate by 30bpm or more, then you may have POTS.** If you are on a budget, you could even do this using an ordinary wristwatch and feeling your pulse (take numerous samples, though, because symptoms can come and go). An advantage of the Polar method versus visiting the neurologist is that POTS sufferers tend to have good and bad days, and you could end up having a "good" day when you had the tilt table testing (i.e., test result is not indicative of POTS despite satisfying the criteria on most days).

For XMRV, you need to get a physician to sign off on a test from VIPDx (link).

** there are other causes of tachycardia. I am not a physician. This advice is probably worth what you paid for it.

 

[spindrift]

The finding that XMRV may tend to take up residence in smooth muscle tissue makes me wonder if that could be why a POTS sufferer's peripheral (legs particularly) blood vessels mysteriously fail to contract properly, even as their nervous system is screaming (releasing lots of norepinephrine).

I just saw this. Subt4ct, I have totally been thinking the same thing. I have POTS, orthostatic
hypERtension (my neuro thinks I pure out too much norepinephrine when I stand up to compensate for blood pooling in the lower body) and I am also hypermobile (which comes from loose ligaments). I am wondering if XMRV causes problems with the connective tissue too. And then I wonder if XMRV causes connective tissue damage
in blood vessel and that is why they can't contract properly. Then again XMRV could be causing problems with the collagen production. This is all speculation of course.

My XMRV culture results should be coming in in about two weeks.

 

[SunnyGal]

Spindrift, I'm just wondering if you've been seen by an LLMD to see if you have Lyme? Lyme is known to cause problems with collagen (it loves collagen), and Judy Mikovits has said that XMRV may likely allow Lyme to become active as an opportunistic infection.

Sunny