Anyone here with POTS who is also XMRV positive?

[spindrift]

Thanks SunnyGal.

I have not been tested for Lyme; this runs in my family and we all have the same symptoms. The others all tested negative for
Lyme. I should probably consider it. Right now I am waiting for my my XMRV results.

 

[SunnyGal]

Spindrift, I'm sure you know this but I'll write it for the benefit of others who may be interested.

Lyme runs in families as it can be sexually transmitted and also passed from mother to baby before birth. Testing negative for Lyme does not in any way rule it out. Just like XMRV is difficult to find in the body and test for, Lyme is also difficult to test for. Even the CDC says that a Lyme diagnosis should be made by clinical observation not by test results alone. This is why it's important to see a Lyme literate doctor, someone who actually knows the symptoms of Lyme, for diagnosis and treatment. Regular doctors haven't a clue how to diagnose or properly treat Lyme disease.

Lyme testing at standard labs such as Quest or LabCorp are well known to be very inaccurate. A negative test at one of these standard labs is basically meaningless. Even testing done at a lab that specializes in Lyme testing, such as Igenex, is often negative even when the patient has Lyme. Often the sicker you are, or the longer you've had it, the less likely you will test positive for it.

I suspect that many diagnosed with chronic Lyme have XMRV that has allowed the Lyme to take hold and cause issues.

Sorry to hijack the thread! Back to the discussion of POTS and XMRV.

Sunny

 

[_Kim_]

Survey says:

Out of 14 people that have completed the survey, as diagnosed by their physician

• 3 have POTS
• 4 have NMH
• 4 have OI

At least among our respondents, POTS is not a symptom for everyone with XMRV infection.

 

[SunnyGal]

Survey says:

Out of 14 people that have completed the survey, as diagnosed by their physician

• 3 have POTS
• 4 have NMH
• 4 have OI

At least among our respondents, POTS is not a symptom for everyone with XMRV infection.

Very cool, Kim!!! I still have to take the survey so that'll increase a bit.

Survey question: Does it provide definitions for POTS, NMH, and OI? And if not, what are the definitions? I've been looking on the internet but find various terms used for similar things.

Thanks, Sunny

 

[subtr4ct]

Survey says:

Okay now I'm trying to reconcile your avatar with my mental image of Richard Dawson in his three-peice suit... ewww :Retro smile:

 

[subtr4ct]

@_Kim_:

Could you tell us how many people that is total? Given different possibilities for overlapping conditions, that could be anywhere from 4 to 11 people that have some type of orthostatic intolerance. Thanks for posting this -- having this survey data will be so nice.

 

[DysautonomiaXMRV]

To have POTS requires a diagnosis for it, and outside the USA it's practically unknown. I only knew I had POTS after nearly dying, most doctors don't know it exists and misdiagnose POTS as Anxiety/Panic Disorder because a TILT test is never performed. No POTS clinics exist in the UK, they are 2 clinics that deal with Syncope. (For a population over 62 million). Equally the UK government only have 8 hospital beds for ME CFS. So 'detection' of POTS and diagnosis is very difficult.

In an ideal world we need the XMRV+ folk with ME CFS, now getting a TILT test to see if they POTS!

In regards to the excellent survey, possibly we need an update in the next version for people
to select?:

I have XMRV and have been diagnosed with POTS
I have XMRV and don't have POTS (not given Autonomic testing for POTS e.g. TILT test)
I have XMRV and don't have POTS (was given Autonomic testing for POTS e.g. TILT test)

 

[VillageLife]

Yes I had a tilt table test in London hospital! 8 years ago now. It can be tested in the UK.

What will be interesting to see is, if a P0Ts sufferer tests negative for XMRV.

 

[bel canto]

spin, I'm also really interested in autoimmune-type issues, joint hypermobility, collagen, etc. We have so much in my family. May be awhile before those things are sorted out.

 

[VillageLife]

That means out of 14 people.....11 had a Serve blood pressure problem.

Types of OI
There are many types of OI, at least two forms have been linked with CFS in research studies: NMH and postural orthostatic tachycardia syndrome (POTS).

NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.2

POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing.1 It is also known as chronic orthostatic intolerance, or COI.11

Symptoms of OI
The blood pressure and heart rate changes in NMH and POTS are accompanied by orthostatic symptoms such as lightheadedness, dizziness, nausea, fatigue, tremors, breathing or swallowing difficulties, headache, visual disturbances, sweating and pallor. Many patients develop swollen, bluish legs, providing evidence of blood pooling in the lower part of the body.10 These symptoms can become worse or be provoked more quickly in warm temperatures or hot indoor environments like saunas.

 

[_Kim_]

Okay now I'm trying to reconcile your avatar with my mental image of Richard Dawson in his three-peice suit... ewww :Retro smile:

:Sign giggle:

@_Kim_:

Could you tell us how many people that is total? Given different possibilities for overlapping conditions, that could be anywhere from 4 to 11 people that have some type of orthostatic intolerance. Thanks for posting this -- having this survey data will be so nice.

Nah, I can't tell from this quick summary report. Later, we will export the data and ask questions like that, but I'm just looking at what the survey software produces automatically.

 

[_Kim_]

That means out of 14 people.....11 had a Serve blood pressure problem.

We can't tell if some of these responses were made by the same or different individuals. For instance, we can't know if one person checked off both OI and POTS or if that came from 2 different people.

 

[SunnyGal]

That means out of 14 people.....11 had a Serve blood pressure problem.

Types of OI
There are many types of OI, at least two forms have been linked with CFS in research studies: NMH and postural orthostatic tachycardia syndrome (POTS).

NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.2

POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing.1 It is also known as chronic orthostatic intolerance, or COI.11

Symptoms of OI
The blood pressure and heart rate changes in NMH and POTS are accompanied by orthostatic symptoms such as lightheadedness, dizziness, nausea, fatigue, tremors, breathing or swallowing difficulties, headache, visual disturbances, sweating and pallor. Many patients develop swollen, bluish legs, providing evidence of blood pooling in the lower part of the body.10 These symptoms can become worse or be provoked more quickly in warm temperatures or hot indoor environments like saunas.

So, that's what I gathered from reading on the internet, that POTS and NMH were types of OI. So, when I do the survey I'll be adding one to each of those choices.

Sunny

 

[alex3619]

Hi. It appears likely that XMRV loves to target blood vessels as previously noted. It is also likely that blood vessels are a primary target of the immune system, and this includes the emergency antiviral pathway - using elastase to create cleaved (low molecular weight) RNaseL. The only problem, it also destroys elastin, the protein that makes your body elastic! If this is correct, then the blood vessels would be stiff (confirmed by Irish CFS researchers) and have very different biophysics to normal blood vessels. The elastase would also attack muscles and many connective tissues, altering their physiology. The combination of XMRV and high elastase could easily explain all of these observations about the vascular system. Under this interpretation, the prevalence of XMRV in those with NMH or POTS as well as CFS would be very high. Just for the record, some of us have an inverted response to blood pressure drop, and our heart slows when blood pressure does. I had my heart stop during a tilt table test! Bye, Alex Young

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.

 

[spindrift]

Wow Alex!!!
Thanks for pointing that out. I was not aware of those connections, but then 'only' having had
severe symptoms for a little over a year I am kind of a newbie to all this. I will definitely read
up on that. Right now I am waiting for my VIP XMRV test results which should be here any day
now.

And thanks Kim for just popping up and giving us the stats.

 

[Sing]

Hi Everyone!

I've barely posted in ages because I've been going through hip replacement surgery (April 26) and now recovery. My comment here is that the greatest difficulty I've been experiencing during recovery is OI, specifically NMH. (Though I've never been officially diagnosed with this, I have the symptoms. Before this surgery I also got POTS-- not from standing for 10 mins but rather from needing to hurry and walk quickly while in a state of NMH.)

Okay, so post surgery, once I was able to stand and move at all, I found that during the night and all morning, I would rapidly go into NMH. So I needed an aide with me then to get to the commode or later the bathroom, and couldn't do Physical Therapy or Occupational Therapy at all until just before lunch or later on in the afternoon.

They clocked me with very low BP and low heart rates at these middle-of-the-night or morning times and questioned whether I ought to be seen by a Cardiologist. During these spells of OI, my vision would go grey, I got very weak and lightheaded, I couldn't think, my coordination swiftly left, and most alarmingly, I struggled to breathe. In other words, my brain and breathing were shutting down as long as I was in an upright position. Of course this was dangerous as it would have caused me to crash to the floor--with dire consequences for my new hip and healing incision.

Thankfully I went to a good Rehab for 2 1/2 weeks post surgery where I had unfailing support; I learned my patterns, and now I am home at the point when I can take care of myself alone. One friend or another comes in each day to cheer me on, bring a meal or take care of an errand I can't do.

From my experience, I now highlight OI as one of the major symptoms of my CFS--right up there at the top of the list!

Sing