Discussion in 'Fibromyalgia Main Forum' started by LindaJones, Feb 17, 2010.
Dr. Oz did a show on Epstein-Barr Virus on February 17
I think he did a good job
It was a good show. I didn't realize that EBV could cause problems for people years down the road. I had mono back in high school and I still wonder sometimes whether my CFS could have anything to do with my previous bout with mono.
Both my husband and I have had numbers so high that our doctors said they were the highest they've seen for EBV. I was in a study of Valtrex for FM, and even though my numbers didn't come down, my body pain went down from maybe a 7 or 8 to less than 2 (out of 10). And it happened right away.
That said, EBV hasn't been the only viral problem or infection in the big mix, but it certainly was a significant chunk.
Wish I'd seen the show!
They didn't mention CFS at all.
>>>But the woman does not have fatigue- PWCFIDS do not have Fatigue- We have EXHASUTION<<<
There was no mention that this woman has CFS. Her diagnoses was chronic EBV so it could be that she does suffer from fatigue and not exhaustion. I know when I had mono I couldn't stay awake. I don't have that problem with CFS.
From everything that I have read about mono, whether it is from EBV or CMV, anti-virals don't help in the long run. The doctor that recommended vitamin D was recommending it for EBV, not for fatigue.
There's really no such diagnosis as chronic EBV. What was once called chronic mono and chronic EBV are now called CFS--they're the same thing (a more accurate name being CFIDS). The information on the Dr. Oz show was outdated by about 20 years.
Antivirals do help mono and cases of CFS in which there is evidence of active EBV/CMV. There's been placebo controlled trials of Valtrex in both mono and CFS with positive results.[This Message was Edited on 02/18/2010]
I wondered about EBV and CFS possibly being the same thing so I spent some time yesterday researching on the internet. From what I have read, EBV and CFS are now considered to be two totally different illnesses. At one time it was speculated that EBV caused CFS, however, that was been ruled out many years ago.
If you go to the US CDC's website and look up EBV, it said EBV does not usually last for longer than 4 months and should be diagnosed as CFS after that.
If chronic EBV and CFS are "two totally different illnesses" how do you tell them apart?
And I certainly question how much knowledge OZ has on this illness. Very little I'm sure. If the Big Names in the research of this illness still don't have answers -and some have been at it for 20 plus years-how could he? He should stick to what he is trained in but I guess the extra money looks to good to him.
I don't believe that the US CDC is the best source for information. They don't say that CFS "should be diagnosed" rather that it should be "considered".
According to the Dr. Oz website regarding EBV "The fatigue is unrelenting and often confused with chronic fatigue syndrome, which thus far has no solid association with EBV." This seems to be inline with most articles that I have read over the years.
As someone who has had both mono (EBV) and CFS, there is a huge difference between the two illnesses. With EBV I could NOT stay awake no matter how much I slept. With CFS, I don't have the urge to sleep. I am chronically exhausted, with unfreshing sleep, but do not have the need to sleep all day long.
The disease previously named "chronic EBV" has been changed to CFS. They are the same illness. There is no such diagnosis as chronic EBV anymore. It doesn't exist. This is the way it is in the medical literature.[This Message was Edited on 02/19/2010]
I had mono for a year, verified by blood tests... it's unusual.
With mono (or it could've been CMV, the tests back then could not differentiate) I only felt a lot of fatigue when it was in initial stages; also lost my appetite. I only found out I still had it when about 6 months later I realized I was getting increased daily 24/7 headaches. It is a mono/EBV-related meningitis that is not dangerous, just horrible.
I can say I've never been right since, would always crash, rest, get my energy back, and then start the cycle all over again. Nobody knew anything back then (1970s) and I never showed up with anything active. Cycles usually lasted 2-3 years except while I was having kids TG. I also know that I've acquired lyme (and likely other stealth pathogens) as well since then.
the name for any type of relentless infection that gives us horrible exhaustion, malaise, fatigue, etc. Often, as I personally experienced, it isn't one infection, but many in that pathological soup. By testing and knocking down several of those infections with abx, homeopathy, supplements, etc., I was able to return to work full time functioning at 90%. I was on disability for two years, in part, bedridden.
Treat the bacterial and viral infections, and you will improve.
>>>Treat the bacterial and viral infections, and you will improve.<<<
That doesn't seem to be the experience of most of the people that I have met with CFS. One theory going around is that the original virus that made us sick has long since disappeared, but for whatever reason, our immune systems are reacting as if the virus were still present.
I have CFS/Fibro and she has Chronic Epstein Barr/and has had fibro after a couple auto accidents that resolved later.
She does not have post exertional malaise! this si the biggest difference between her and I. Whe she has an EBV flare, she gets very tired and feels sick. If forced to stay on her feet like when she was a waitress, she would conk out earlier than normal and sometimes collapse. This never affected her ability to be a power swimmer! She still kept going on her laps, being tired afterward but never has had the 2-3 day after symptoms we CFS sufferers have.
She was Dx'd as having mono then chronic EBV with very high levels during relapse. She does NOT appear to have CFS. Believe me, we would know. It's the ability to walk, run and exercise that is the most different. She has seen my symptoms for 20 years and I have seen hers since she was 15. She's 32.
I do not believe that CFS is chronic EBV, even though I test positive for EBV too. It seems that EBV is a distinct illness all its own with some symptoms that overlap with fibro.
"If chronic EBV and CFS are "two totally different illnesses" how do you tell them apart?
read my previous entry. the ability to tire or collapse during EBV is very different than the post extertional malaise of CFS. Also, my daughter's EBV flares cause her to sleep continuously.
I can never do that. I am wired/tired. Overstimulated.
Very well said, onset1990!
I agree, Karyn. Well said onset1990! As I mentioned earlier, for me at least, the symptoms for CFS are much different than when I had mono.
[This Message was Edited on 02/23/2010]
I did not get post-exertional malaise until 25 years later.
Before that I crashed whenever I tried to lead a 'normal' life for any meaningful period of time, and it would take a year of moderate activity to recover.
But it was different; I could still exercise tho I slept more.
I believe other pathogens got in there & my body got worn down enough so they could became activated. Such as Lyme.
Separate names with a comma.