Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan

[Adam]

Bash the Brits I say...oh, sugar! I am a Brit. Once saw a movement disorder specialist in UK. Been to Harvard I think. Neuro tests didn't show anything. Had some strange symptom diagnosis called...hmm. Yeah Got it. Segmental Spinal Myoclonus. Look that one up. I doubt you'd find much. Anyway, back to the specialist, "...you do realise Mr. ...someone might say to you one day, there isn't anything wrong with you?' Really? Why is it then I walk like somebody who has downed ten pints in about half an hour? Sorry, gone off the point...which is...I hope Reno got it rght, not London. Or I'll crawl back into my shell for the next 13 yrs by which time I'll be sixty. And REALLY fed up. I don't see XMRV as been very treatable for those long-term, but maybe a bit. But not if NICE have their way. No way. And worse, if sexual transmission is part of the package, well,the implications are obvious. And ironical I guess. God alone knows how many years people waiting to at least have their illness recognised, validated. only to be shunned for a completely different reason than at present. Must go to bed. Goodnight all and take care.

 

[Adam]

love the signature

 

[bigbird]

Hi Dys,

I know this whole thread is a broader conversation -- huge actually. But I'm new to this site and am slowly trying to understand some of it. I know that some of what is written would pertain to me but not sure what, yet. In other words I've got a lot to learn. Understatement. But a bit from your post stood out. I've snipped a bit from it. I have dysautonomia (POTS).

You wrote:

"Your experience could be due to the fact you may not have Dysautonomia and/or your brain is unable to mechanically 'launch' a stress response, so you feel no stress. No Dysautonomic can (biologically) deal with any stress and thus emotional control of stress is impossible. (Hence Dysautonomia is such a horrible thing to have. Mind over matter doesn't exist in the condition). Emotional stress involves cortisol."

Okay, just want to know if I'm trying to get upcreek without a paddle. I've been trying to control my emotional responses for so long now that I've come to feel like a failure. I don't handle emotional stress at all well. It can have more impact on me than phsyical stress. I don't think I handle it at ALL. Am I trying to achieve the impossible given the state I'm in at this time - healthwise? I can't handle emotional stuff and I've thought of it as being very childlike for a woman of 54. Had begun to hope that when the transition of my menopause is complete my emotional responses will dampen down a bit. More equilibrium. As this very dampening down of emotional responses after menopause is something I've read about a number of times. Am I trying to achieve the impossible by concentrating so much on trying to get a grip on my emotions? Any imput would be appreciated. I'm a novice when it comes to the info available on this site. Have been diagnosed with POTS for 3 plus years but was misdiagnosed with mental condition "Panic Disorder" for nearly 2 decades.

Got to admit, I'm scared to ask a question because every one seems so certain in their questions and I'm scared to ask a stupid question. Or get a response I don't understand. They tell me their are no stupid questions. But for sure, I did ask one once. I blame it now on brain fog. I just thought I was an idiot at the time.

 

[starryeyes]

(((((((((((bigbird))))))))))))

It's true.. there are no stupid questions! :Retro tongue:

I understand what you're going through. My emotions have been out of control since I relapsed and started perimeno and I'm hoping the same thing that you are... that I'll be better when I go through meno. One of the things that helps me a lot is reading the message board over at powersurge.com

Just seeing that emotional lability is normal at this time in my life is a big relief and I usually get some good laughs over there about it too as those women are so funny when they describe what they're going through!

I suffer from dys too and I know how hard this is on us. Emotional lability is common in CFS too and in FMS if you have that as well. So double or triple whammy for us!

Hugs and just so you know... you come off as self-assured and intelligent too. :Retro smile:

tee

 

[bigbird]

Thanks for your response tee,

I will have a look at powersurge.com. Also, I remember reading a paper by Dr Grubb, well known American POTS specialist (well known to people with POTS, I mean)where he said that POTS can be made worse (or resurface) during the menopausal transition. I don't know whether I have CFS. I feel like it. But no doc has ever bought it up with me. And I haven't pursued it really until now because I couldn't see the point in being perhaps diagnosed with another illness that they medicine can do little about. Plus I'm an Aussie and Australian docs are generally very sceptical about CFS.

Certainly POTS and menopause is a double whammy! And it's taking me a long time to get through menopause -- blood tests came back as me being menopausal 8 years ago (but I still had regular periods then -- it's 2 and half years since my last period and I'm now post-menopausal -- according to blood tests -- but still dealing with hot flushes, etc. I'm now aware that the label -post menopausal -- does not mean the menopausal transition is over yet). But 8 years ago I went to the doc and requested blood tests because I was feeling more unwell than usual. I think it was no coincidence that my then undiagnosed pots was getting worse at the same time my FSH levels were high and estrogen low, indicating menopause.

Thanks for reassurance about me coming off as self-assured and intelligent. I honestly don't feel that way at the moment. It helps to know that what I write or say is making sense.

 

[starryeyes]

Absolutely bigbird! :Retro smile: And I'm not just saying it to be nice. It's the truth. I think our perceptions get played with big time with hormone dysfunction.

Bigbrd wrote: I remember reading a paper by Dr Grubb, well known American POTS specialist (well known to people with POTS, I mean)where he said that POTS can be made worse (or resurface) during the menopausal transition.

Oh good. I like hearing reports like that because it gives me hope for the future. I have met quite a few women in ProHealth Chat who were bedridden during perimeno and then were only housebound after meno. They do get out quite a bit more than me now.

Bigbird wrote: I'm now aware that the label -post menopausal -- does not mean the menopausal transition is over yet.

That's true. I'm learning that too from the women at powersurge. That's a bummer. I hope things get better for you.



tee

 

[_Kim_]

The videos have been posted up on Prohealth. We need volunteers to transcibe it in bits (15 mins or so each). To sign up to transcribe a section, go to the transciption thread

 

[Hysterical Woman]

Thanks for the summaries everyone and for the transcript freeprisoner. I'm really looking forward to the full video.

Just another data point for the discussion a few pages back - I think I feel better on NSAIDs too but they murder my stomach so I avoid them. I haven't been tested for XMRV yet so I don't know if there's any correlation there.

Hi catch,

I understand the murder on the stomach with the NSAIDS. Aleve makes me feel so much better, but causes lots of stomach pain and the nausea. You might consider turmeric/curcurmin as an anti-inflammatory - it helps me. But please know that I am not any kind of health care professional only passing on what helps me some. Also, I believe Dr. Cheney mentions curcurmin.

Good Luck,

HW

 

[JAS]

OK men, please cover your eyes! When my CFS was triggered my otherwise reasonably smallish boobs, I was stick thin at the time, grew hard and large (my husband was delighted though I wasn't in the mood!) and I do feel that this could be put on as a symptom of CFS as I know other sufferers have felt that too (obviously female!). In the May, before my CFS was triggered in the following August by an inner ear infection, I had the mirena coil inserted, it includes an active ingredient called levonorgestrel which is a synthetic version of progesterone, may be a co-incidence, however what it does do is allow my underlying mood to be level all month as I no longer have periods, ie, maybe some sort of hormone therapy may help but which one etc I don't know.

OK men, can uncover your eyes now!!! I am not going to be popular for my next statement but this perhaps where the Lightning Process comes in, I attended the Energy Excellence Course in Wales which is an offshoot and although it didnt fully help me in that although my mood was better I could still feel the usual sensations in my lower legs and arms and my muscles still twitched...+ I crashed etc etc..so many symptoms, but it is all about trying to stop any stress in your state of mind, until now I was having difficulty seeing how this could fit in with it being a physical virus, but after listening to Dr Mikovits' 22nd Jan talk maybe, just maybe it can help. I was recommended the course by the father of a 12 year old boy who most definitely had CFS but is living a full and active life now...there are some other members though that are like me in that it has improved but not cleared it by any means....just thought was interesting. I shall look at the anti-inflammatory...is there a natural approach for this?

 

[Hysterical Woman]

Huge Snip

. I shall look at the anti-inflammatory...is there a natural approach for this?

Hi JAS,

You might want to check out the book "The Inflammation Syndrome" by Jack Challem. There are some suggestions in there re natural approaches to inflammatory problems.

Good Luck,

HW

 

[JAS]

Thank you Maxine J x

 

[starryeyes]

I'm in the middle of the 2nd video and all I can say is WOWZA~! Oh my, this is really good. Like a dream come true. I realize she's still not saying that XMRV causes CFS but I am so thrilled with this discovery and Judy Mikovits is my Heroine!! :victory:

I've had so many thoughts that I've wanted to share here about the science... but most have slipped through my mind now that I'm back here.

Judy keeps bringing up Reverse Transcriptase as related to the XMRV virus. Does anyone here remember how many of the journals from the NCF talked about reverse transcriptase? For years they described in very scientific terms how they had discovered a problem in PWC regarding this reverse transcriptase. I sure wish I had access to those now. They talked about all kinds of immune dysfunction problems in us that Judy brings up too.

I had to laugh when she said she knew nothing about CFS. As if anyone really does know. :tear:

What gave me the most hope was when Mikovits said that when they were able to treat HIV in AIDS, their immune systems were able to fight off the other diseases they were developing like sarcoma cancer. She said she hopes there's a correlation just like that for XMRV which then might allow our immune systems to keep EBV and HHV6 and Lyme Disease etc.. in check.

Yeah Baby!!

She said that EBV and HHV6 etc... are ubiquitous but because they're reactivating in many PWC that proves there's something wrong with our immune systems.

 

[usedtobeperkytina]

No one has mentioned this, but did I hear there is going to be an approved, standardized test within a month?

Coffin was pretty good then.

Please someone else confirm. Did I mishear it?

Tina

 

[starryeyes]

I don't recall hearing that but I have to watch both videos again because I kept dozing off. Darn CFS!

I did hear Judy say "Why bother paying to get tested? We need test subjects, enter our studies and get tested for free." You never know, that might include treatments at some point too.

 

[Kati]

No one has mentioned this, but did I hear there is going to be an approved, standardized test within a month?

Coffin was pretty good then.

Please someone else confirm. Did I mishear it?

Tina

I thought I heard the antibody test coming but I am not sure.

 

[cfs since 1998]

No one has mentioned this, but did I hear there is going to be an approved, standardized test within a month?

I thought I heard the antibody test coming but I am not sure.

Yes, I think she meant that the antibody test at VIPDx will be available in a month.

 

[garcia]

Yeah Baby!!

I would like to echo this sentiment!

 

[JAS]

Me too! I also thought she said that they would retest past VIPDx (presumably negatives) with it.

 

[V99]

She said that a serological assay is one month away. (What is this exactly? a blood test?)
She said they would be going back and testing all negatives.
:victory:

 

[Hysterical Woman]

Thanks for reminding me about curcumin Maxine. I read something about a month or two ago but forgot to follow it up. Hope it's been helping you.

Hi catch,

No problem with the reminder. Did you follow up. Does anyone know what brand/dosage Cheney uses for curcumin?

Thanks,

Maxine