DR OZ TODAY (12/3) on CFS/XMRV

Carry on.....

I don't know about you, but I thought I could carry on right up until I couldn't anymore. I did it for several years. I could see that I was on a steady decline though. I took a leave of absence 3 times in four years and the third time I couldn't get back up....well I did get up, but couldn't stay up. I worked about four hours a day, alternating working at home and going to the office, hoping to gradually increase, but it just took me down to a crawl and then collapse.

 

Koan - I haven't seen the program so cannot really comment on what was in it, but I've seen so many programs where they show yawning people. I suspect many of us here would love an illness where we were just tired, needed a bit more sleep, a bit of a lie-in, when many of us could adopt Andy Fairweather-Lowe's song "Wide Eyed And Legless" as our anthem, as sleep eludes us even while our bodies are too exhausted to move.

 

In the BBC interview (posted here in the general section), Charles Shepherd says that it's as if the battery in the muscle is dead. That really rang true for me. There is a point at which there is no way to move at all until it recharges and the ability to recharge is very variable from day to day and patient to patient.

And, Loldershaw, I thought I could carry on until I couldn't any more, too. Even as you are being taken down, accomodating each new level of disability, it never really dawns that you will be totally unable to function until you're there and you can't.

 

I'm so relieved and glad that this segment turned out so well! Whew! Thank you very much, Dr. Donnica and Dreambirdie.

I appreciated the way Dr. Oz took the illness seriously and kept asking his guests to educate him about the illness. I thought that showed a very good attitude. I hope other doctors will emulate him in that respect.

I appreciated the way Dr. Oz always called the illness "chronic fatigue syndrome". It's a small quibble, but I felt distressed that the CFS patient, Gina, kept calling it "chronic fatigue". You'd think if anyone would call it the correct name, it would be the patient.

I've watched his show some, so I expected it to be a very short segment, and I wasn't surprised that Dr. Oz got in a plug for doing a bit of exercise. He would probably say that about any serious chronic illness.

I liked the video of a retrovirus infecting a cell, too.

Forebearance

 

You know, Martlet, I get about 9 hours of sleep every night now. I didn't in the first and second decades of illness but I have a system now which works for me. And yet, I wake up every morning feeling as though I have not slept in weeks. I always feel a little disappointed, even though it happens every day, that, once again, I am waking up exhausted.

 

I

I got the sense that Gina was knew to this. Correct me if I misunderstood, but did she say she did not have a diagnosis or was not told she had CFS until after the XMRV test was done? If that's the case, she is probably in year one or two.

Give her a couple more years continuing to try to carry on, and she might be where some of us are today.

Tina

 

I didn't see that Charles Shepherd interview either but boy, does that sound right. Thankfully, I am much better than I was in the first four years, muscle-wise, but back then I would carry a heating pad everywhere, then could get an extra bit of use out of my muscles by applying heat. Kind of like carrying an extra battery-pack.

I go in cycles. For several nights in row, I'll be wide awake with a peculiar sort of buzzing in my body, almost as if I'm vibrating. Then for a few nights I'll be like you, sleeping nine, ten or more hours. But never do I get up feeling as if I had a good night's sleep. I have to work at not resenting my husband, who can sleep anywhere, then bounces right out of bed, ready to face the day.

This all goes to show that we are all so different, even while having the same illness.

 

Koan

Although I have never seen this interview I think Charles Shepherd got it right. However, it is not "as if the battery in the muscle is dead", it really is dead. Many of you know I take glutithione/ATP injections which have helped me tremendously. The following are definitions of glutithione and ATP given to me by my doctor on my first appointment.

Glutithione: is a naturally occurring antioxidant that protects your mitochondrial energy furnaces from damaging themselves, helps the liver to detoxify compounds and aids in proper immune function

Adenosine Triphosphate/ATP: is the substance which stores the energy created when the body burns carbohydrates and fats in the Krebs cycle. When the body needs energy (as, for example, in muscular contraction), ATP is broken down into ADP (adenosine diphosphate) and immediate energy is released. ATP is the universal energy molecule for the body in the same way that electricity is the universal energy source for a computer.

If your body is depleted of glutathione then your battery really is dead. If I did not get my recharge once per week I would be in bed right now. However, after speaking to many people online with CFS I wonder if there comes a point when the battery cannot be recharged.

 

Thank you, Frickly, for this great explanation!

What a I really like about the battery analogy is that it gets at muscle failure. If I go beyond the energy stores in a muscle it fails. I can't power through or think myself onward - the muscle fails.

I can reboot (to mix my metaphors) the muscle by not using it but, unless it is allowed to recharge completely which takes some time, I am stuck in a partially charged state with the attendant dimming then dying of function until I am able to completely recharge. The longer it's charged, the longer I can use it.

My body behaves just like my laptop which, incidentally, is on the fritz and the battery will not recharge! How deliciously ironic

What I don't understand, in the context of your explanation (or in any other context, for that matter) is why/how the months of doxycycline I take periodically (1 mo. on, 2 mo. off) allow my batteries to take a better charge and function longer without failure.

Anyway, I wish I understood this better. I'm afraid I'm a bit like that cartoon dog who, despite his rapt attention, only understands what he understands.

Woof,
k

 

here it is

the dr oz show w/ xmrv.

http://www.youtube.com/watch?v=_WEUC7hRXzM

 

I missed the show so this is great. Thank you!

 

Koan,

Of course this is only my opinion but is based on personal experience. I have also been taking antibiotics for many months. It's sort of like the chicken or the egg story. My glutathione is depleted as a result of a virus' and/or bacteria. Or the virus' and/or bacteria have caused a depletion of my glutathione.

If we have a virus or bacteria that is being succefully treated through antibiotics or anti-virals then our bodies have extra energy reserves to go towards making glutathione rather than fighting these bugs. This, hopefully, will lead to strengthening of our immune system. I beleive it is a vicious cycle.

I have heard many people say that taking glutithione helped for a short time but then they went back down hill. I wonder if these people had other issues simular to mine that have not been diagnosed or treated by a doctor. I do not beleive my glutathone levels will ever be normal until I rid my body of these other infections. If the XMRV thing pans out and I test positive then I suspect I will always have problems keeping my glutathione levels up.

 

Thanks for posting that cfidsurfer. I don't have a TV and have been so eager to see this segment.

Dr. Donnica - wonderful job!! You are such a clear speaker and great advocate for our community
Gina - thanks for being so open and sharing your story with the world.
Dr. Oz - you done good. You seemed sincere and caring and handled this with the kind of gravity I had hoped you would.

Dreambirdie, you ought to be proud for your efforts. Gosh, I remember how you coaxed us initially into sending Dr. Oz a letter. You got me to write to him and I'd never even seen his show.

 

Hi folks,

Someone finally posted it on YouTube at:
http://www.youtube.com/watch?v=_WEUC7hRXzM

The last mention of exercise - the WAY he emphasized it without making clear that many with severe ME(/CFS) cannot "exercise" at all, and in fact are bedridden (like me) was very troubling, even though he tried to qualify it in the last second.. But that qualification will be missed entirely by a lot of doctors, family, etc. who I've had to deal with. Maybe he was rushed too much, in which case he shouldn't have blurted it out just before they broke away to commercial!

Also, with all the focus on XMRV, as if it was already anointed as the cause, no attempt is being made in the media to do justice to the tons of research that has found physical abnormalities in PWCs over the years...Which means that if the WPI findings (god forbid) should for any reason not be replicated, we'll be back to square one in terms of public and professional ignorance, and the counterattack by the psych lobbies will be powerful.

I would still call this a good first step as far as media exposure, but it always seems like we only GET one step, doesn't it? And we need so many more!
(Sorry if I seem negative...desperate is more like it!)

Peace,
-K


---Edit: Whoops, didn't see someone already posted it. Still getting used to these forums; today were my first two posts...

 

My Dell mini-laptop satisfies the CDC criteria

Hey Koan,

I have always felt the laptop analogy was a good one! In fact, lately I've been thinking my laptop has CFIDS, too...
To begin with, it's got a teeny, cheap hard drive so I can't fit any decent security programs, no firewalls, etc, on it -- genetic predisposition. I still use it to surf the web a LOT (environmental toxicity?). Then it got a nasty computer virus that hijacked the whole operating system (acute viral onset). After being unable to afford official tech support (lousy medical insurance coverage), I received free various treatments with good antimalware products from a kind soul (rare good doctor). However, despite negative findings on repeated scans, my computer has not been the same; it has strange memory and information processing problems (cognitive difficulties), simple browsing now causes enormous resource strain on the CPU (post-exertional malaise), the CPU itself may have a memory leak (leaky gut?) and the browser crashes every now and then when it's overtaxed (you get the analogy). And yes, the battery keeps needing to be recharged after very brief use.
I think it satisfies the current CDC criteria, as well as possibly Fukuda -- what should I do?
P.S.-- More computer-savvy people either don't know what's wrong or say it's nothing, just a poorly-constructed computer getting temperamental (psychosomatic illness).

 

I cracked up, reading about your laptop. My PC is like that. The browser will run only so long, then it sputters along for a moment or two before completely freezing. I have to reboot every time. The PC shuts down, takes a break then takes forever to power up.

I've scanned it for viruses, but have found none.

I've tried malware scans but none there.

I've refined its program diet but that doesn't help.

I don't understand it. I have NEVER exchanged bodily fluids with this machine but we do have one thing in common .... the mouse.

 

While

While the battery is good, I have used another analogy. I have said it is like someone pulls a plug out and all the energy just drains out, sometimes suddenly.

I have also described it as fatigue like someone on chemo, hormone problem symptoms like I am in menopause, and cognitive problems like I am in the beginning of Alzheimer's. And here's the kicker, all of these at the same time.

Dr. Donnica said this isn't about forgetting where the keys are, but forgetting what the keys are for. Well, I think it includes forgetting where the keys are also.

Tina

 

Thank you to those who posted a link to the show segment. Dr Donnica did a brilliant job in so short a time. Dr Oz was not too bad - other than beating his exercise drum but what interested me most was audience reaction. I thought of all those at home perhaps hearing this for the first time.

As others have said, not perfect but a good start. The more we can get it out there, the better for all of us.

 

Dr. Yes

You cracked me up too!! Thanks, I needed that laugh today - that was GOOD!

Welcome to the forums,

Linda

 

Or putting one shoe and sock on, then with the other sock in hand, pushing your foot sockless foot into the other shoe.

Or one of my favorites, sitting on the stairs with a cup of tea and a small bowl of water in readiness to clean the banister rails, only to find your co-ordination failing until you can't get the cloth into the bowl - and then halfway through, realizing that you switched from washing the woodwork with water and have been washing it with tea. And THEN, trying to get the tea to the kitchen without taking a sip.

Really, we do need a thread on some of our funniest brainfog moments.