Those testing positive - autonomic disfunction??

[ramakentesh]

I was just hoping to ask patients that are testing positive - assuming you feel like sharing - whether any of you suffered autonomic disfunction (either orthostatic intolerance, Neurally mediated hypotension or Postural Tachycardia syndrome) in your symptom presentations!

thanks!!!

 

[mojoey]

Yes

I tested positive for viral culture, and OI is one of my top 2 symptoms. So is intolerance to stress (leads to being wired for hours on end.)

 

[dipic]

I'd be interested to know too, personally. I have NMH/POTS and have always felt that I have an atypical (or at least not a classic case) of CFS where my symptom presentation is more neurological than immunological. That said, while I likely won't get tested for a while, I have a feeling that I will end up positive.

Should be interesting to see where all this goes and who turns up positive.

 

[firefly]

I'm in treatment for autonomic dysfunction (primarily POTS) at Mayo Clinic, but I tested xmrv negative for both culture and PCR through VIP dx. I'm quite surprised, relieved, though apprehensive about false negatives.

My onset was gradual (extreme fatigue, during a time of intense personal and professional stress). The POTS and autonomic dysfunction, including inability to sleep, feeling profoundly brain-fogged, getting wired like crazy when in only slightly stressful situations, and neurasthemia in feet all started a couple weeks after I herniated a disk in my back. That seems to have been the triggering event for me, though about a year into things my EBV early antigen titers were elevated indicating a reactivated infection within the past year.

EBV tends to reactivate under stress, so my theory is that it was a consequence, not the cause.

Mayo's theory on autonomic dysfunction is that it can be triggered by any number of events. They routinely check for AChR antibodies, and treat with Mestinon on the basis of that theory, which I know has been quite helpful for many of their patients, at least in relieving POTS symptoms.

Incidentally, VIPdx, to my surprise, got my test results back in a week. I sent them in early December and got them back a week later. Given all the tales of the process taking weeks for so many others, I'm not sure what to think (perhaps my sample was just obviously negative - but who can say -- that's reading too much into things.)

 

[firefly]

Thanks, Sue. Good to know. Will call them tomorrow.

 

[ramakentesh]

Interesting. thanks for the replies.

 

[OurDayWillCome]

Ramakentesh... thought you might want to read this information:

It is estimated that as many as 70% of people with CFS also have POTS. The cause of POTS is not known, but the mechanisms of POTS are being deciphered. The American Journal of Physiology - Heart and Circulatory Physiology published a paper by Dr. Anthony J. Ocon titled, Upright cerebral blood flow and cerebral autoregulation in normocapnic postural tachycardia syndrome. Ocon works with Drs. Marvin Medow and Julian Stewart at the Center for Hypotension at New York Medical College. This important paper, together with the paper by Dr. Barry Hurwitz (below), provides provocative evidence for disturbances in circulatory regulation that decreases the flow of blood to the brain.

http://www.facebook.com/note.php?note_id=125592465538

 

[Cloud]

I'd be interested to know too, personally. I have NMH/POTS and have always felt that I have an atypical (or at least not a classic case) of CFS where my symptom presentation is more neurological than immunological. That said, while I likely won't get tested for a while, I have a feeling that I will end up positive.

Should be interesting to see where all this goes and who turns up positive.

For the first 8-9 years my symptoms were all Immune with the "never ending flu" symptoms, swollen lymph glands, achy muscles, sore throat, etc. But then I moved into having all Neuro symptoms of OI, severe stress intolerance, Post exertional malaise, worse cognitive problems, etc. I was told by Dr Peterson that this was basically a progression of the disease. I have heard that from other reliable sources as well. I can say that I would trade the Neuro back in for the Immune any day.
I'm not sure how these symptoms stack up with the xmrv + folks....I made a suggestion that we fine tune these symptoms on the survery thread.

 

[OurDayWillCome]

Interesting, Ross. My symptoms were the opposite... first Neuro (OI), then Immune.

 

[Cloud]

Interesting, Ross. My symptoms were the opposite... first Neuro (OI), then Immune.

Wow, you are the first I have heard say that! I wonder if it means anything that we have progressed in opposite directions. And I wonder if it has to do with types of infection?

It sure seems to me that xmrv could explain my Post Exertional Malaise much better than Cytokine Storm alone. If xmrv has a cortisol receptor, it's like an all you can eat buffet for it when we get stressed....just a thought.

Thank you for sharing this

 

[OurDayWillCome]

YW, Ross. Who knows... it might be the type of infection or different genetic weaknesses...or ????. Too much unknown at this point. I am waiting for a more standardized test before testing, but not very patiently!

The next few years are going to be really interesting as the researchers sort things out.

 

[SickOfSickness]

I only just ordered a kit, which may take over 6 weeks to receive.

An neuro diagnosed me as having unspecified "autonomic dysfunction". Another neuro thought that was funny and stupid, but I think he was stupid and jumping to the conclusion that I am a hypochondriac, another one of those.

Interesting about the symptoms, I feel like mine have always been a mix of the two "types" described! Then again I feel like my symptoms are likely due to at least 2 different primary causes... if it's even possible to unravel it that far. Symptoms tend to trigger others, go in cycles, etc.