Posted on 10/07/2015 12:59:44 PM PDT by Seizethecarp
Before he got sick, Whitney Dafoe was an award-winning photographer and a world traveler. But now, at 31, Whitney lies in bed in a darkened room in his parents’ home, unable to talk, walk or eat. This isn’t the picture that people imagine when they hear “chronic fatigue syndrome,” which is often viewed by the public and the health-care community as a trivial or primarily psychological complaint.In a February report, the Institute of Medicine gave the illness a new name — systemic exertion intolerance disease. Many patients have long criticized the name “chronic fatigue syndrome” for not reflecting the seriousness of the illness. The new name, some say, is not much of an improvement. Some patients call it by an older name, “myalgic encephalomyelitis.” Most official documents refer to it with a compromise term, “myalgic encephalomyelitis/chronic fatigue syndrome,” or ME/CFS.
The IOM report notes that doctors often lack understanding of the condition and are often skeptical that it is a true medical condition, believing instead that it’s partially or wholly psychological.
Some may therefore be surprised that the illness is now a major research focus for one of the world’s leading biomedical scientists.
That scientist, Ronald W. Davis, is Whitney Dafoe’s father.
Davis heads the Genome Technology Center at Stanford University. In the 1970s, he developed techniques for gene mapping that were later used in the Human Genome Project, for which he was a co-investigator. In 2013, the Atlantic magazine named him one of “Today’s Greatest Inventors, ” along with such people as Vint Cerf, sometimes called “the father of the Internet,” and Elon Musk, one of the founders of electric-car company Tesla Motors.
(Excerpt) Read more at washingtonpost.com ...
I wanted to offer you a possible way to help. I had similar symptoms as you 5 years ago. My doctor had no clue, and never did, but on my own I found out I was suffering from multiple food sensitivities. By doing a simple blood test from an independent lab unrelated to my health care provider (who as I said was clueless and never would have found me this help) I was able to simply change what I ate, and my health was restored.
http://meridianvalleylab.com/E-95
Here is the website of the lab that did my test. There are no doctors or insurance companies involved which makes the price of the test low. Last time I sent a friend to get help from Meridian Valley Lab, the cost of the blood test was 277 dollars. It was only 255 when I did it 5 years ago. It literally saved my life to do this simple blood test.
I got the “combo test” which tests you for 200 foods. The Combo Test is the basic food panel plus the “extended” food panel and is test #2200 when ordered.
The nice folks at the lab tell you what to do when you call.
They take payment over the phone, mail you the test kit, you go to a local approved blood draw place (it is free here, but usually it costs 50 dollars and that is in addition to the $277), they use the kit you bought to prepare the blood sample, they send it back to Meridian for you (it’s pre-paid with the kit), and you get in the US Mail a 4 page chart of what you are OK to eat and what to avoid.
I felt better in one day. I was jumping for joy, Praising The Lord, and called the lab a few times to tearfully thank them for saving my life with a 250 dollar test.
If I was a doctor, I’d require all my patients to take this cheap test. Doctors are so dense about how foods we eat, become part of us, and certainly have the potential to harm us just like other allergies like pollen and other breathed in stuff.
God Bless, and I hope you feel better soon. Freep mail me with any questions, I am a bit of an evangelist for this test, since I owe my health to it.
[[What is strange to me is that every once in a while I will have an almost “normal” day.]]
That happened to me In the beginning- every week or few weeks I’d wake up in morning, and it’s like I never had the stupid problem- and it would last about a day, maybe two if lucky- then wham- back to feeling awful again- then it was longer between such days- then eventually to where I don’t get them anymore-
I used to think it must have been something I ate, or perhaps I slept better or something I drank-
[[When I have gotten them I have invariably done too much, over exerted myself, and rode the roller coaster back into the valley.]]
Yup exactly- It’ like we get so desperate to feel good that when it does happen, we want to cram a whole lot of living into a short period- and end up suffering- often badly, for days
[[soon my wife will have had enough. She “knows” I don’t feel well]]
The problem with this disease, condition or whatever it is is that it’s not a visible problem like beign in a wheelchair, or missing an arm, or having some horrible skin problem or something- it’s a ‘silent’ disease or hidden disease that othersw can’t see-
The other problem is that they see us on ‘good days’ doing things like raking, mowing, or taking trash out, and that is all they see- They see us working hard for a short period, and think to themselves that we should be capable of it for 8 straight hours- many think we’re faking because they can’t see us shaking, nauseous, dizzy, - they can’t see our minds go to mush- etc- they don’t see us sitting o n the couch later, too exhausted to move-, or the next morning as we have to force ourselves out of bed and struggle through the day, usually out of sight of those same people that saw us work the day before-
I hope your wife doesn’t leave but it’s awful difficult to convince others that we’re really hurting here- because they don’t SEE us hurting, they just see us sitting on couch, and have a hard time thinking we’re anything but lazy-
There’s a website I ran across that describes what it’s like to have this problem and have no one believe us- I’ll see if I can find it- it was pretty good- and hopefully will give your wife a bit of insight into our plight- I think perhaps you need to maybe also let her know you’d be there if something like this ever struck her, God forbid, because you understand how difficult it is, and how devastating it is when people don’t take the condition as seriously as they should because they aren’t the ones suffering from it (But perhaps let her know you understand how difficult it is for her to understand the depth of seriousness of the problem because you don’t ‘look sick’ or ‘look disabled’
I have a hard time describing to others- Basically I just tell them to think back to the last bad flu they had, and remember how horrible they felt, how weak they were during the flu- how everytime they tried to do menial tasks like wash dishes, or sweep, or whatever, how it just exhausted them and they would collapse on couch exhausted after doing so- Then I tell them to try having that feeling for 18 years with NO letup- a constant flu- I ask them to try to imagine having to suffer it steady, with no ability to escape it- ever- After a couple of years of it, it’s overwhelming- It really takes a toll- physically and mentally- it’s a very hard thing to have to deal with, and people that don’t have it simply can’t understand what we are going through-
I’ve seen it reduce hyperactive workaholics to house ridden shells of their former self- It’s a Devastating condition- Hopefully you’ll have the support of your wife through it- but she needs to know it’s very likely only going to get worse- unfortunately
lol I’m not quite that old yet- but let’s just say I’ve crested the hill and I have rollerskates on with rocket boosters lol-
wasn’t referring to the hill and don’t know when that is but just realizing if any one got this far something was done right so keep it up!
Mini “Jato” Skates??
The big thing for her is the general malaise. I don't "care" about anything. My doctor has told me I had a blunted affect. I don't get really happy. I don't get really upset. I used to have hobbies I was passionate about. Always had a pretty nice yard, clean vehicles. Now, none of that really matters at all.
apathy- Yep- I am too- (although I do get angry about injustice still - but mainly I have just lost interest in most things-) The thing I think that drives us to it is fighting fighting fighting and ALWAYS losing- it takes it’s toll- it really does-
I think another thing is that the pain and exhaustion is so relentless that that is all we can really put our energies into trying to combat- and so we lose interest in other things- (We kidna become a little selfish In this regard- I have a hard time sympathizing with others who might get sick, or have pain- I’ve become pretty self-centered unfortunately- something I don’t like about myself now- I also find I don’t have patience that I used to have too- but I think this is a result of being fed up with the condition more than anything)
Hopefully your wife will be understanding-
I was just surfing around this morning and found this guy’s youtube channel and thought this video might interest you.
https://www.youtube.com/watch?v=DuBoXv_gRms
I couldn’t get the volume up loud enough to hear it. I will, however, research the Ozone cure. Thanks for the link!
That’s a shame...sorry! :-)
She basically says that after one of his high dose ozone treatments, she has more energy than she ever had in her life. She says she had been down on the beach in Northern California and she sprinted up the stairs which seems like it surprised her.
That’s been my experience too. I’m always surprising myself (and others) with how much stamina I have. I used to be the first one to huff and puff and get pooped out if I went hiking or something. Now, I’m leader of the group and last man standing while all the ‘fit’ people are out of breath and ready to collapse. And I’m still a big guy! Lol
One of my offspring is an MD. Testing for lymes is a standard for any one that complains of chronic malaise or lack of energy. 30% tested positive in five years. This is in the lower Midwest - not a lymes hot spot.
The trouble with lymes testing is that it is not a sure thing.
True and symptoms can vary.
Thanks for the link, it’s certainly interesting, but I really don’t have a clue what is going on there..
It could be anything from a placebo effect to something unknown yet real.
I can get my head around it..
eerrrr....I meant to write “Can’t”.
He’s got a whole Youtube channel of his patients’ reactions to treatment. I believe this one was a ‘high dose’ ozone treatment. Her experience is similar to mine, though I didn’t do anything ‘high dose’.
Well, I have to revert to “whatever works’, because I cannot see how, especially in the blood mixing re-introduction therapy, which is supposed to help the oxygen uptake, that one could not get the same effect with pure oxygen.
I am just baffled by this.
Being a oxidant, ozone like a cancer drug is not known to be a beneficial thing for the body, but perhaps in these cases it is doing something..I just don’t know what the mechanism is..
This is a long one, but he does shed some light on that here:
https://www.youtube.com/watch?v=xOf-li6mATI
There is one thing that I have experienced on several occasions and that is naturally occurring ozone.
If you have a number of cloud to ground lightning strikes in a area near you and the wind is right or no wind, you can smell the strong ozone levels. When this happens I have experienced a somewhat giddy effect. I always wrote that off as being a lack of O2, but it could be something more.
I have also noticed that issues of the intestinal tract or better said digestive system have a dramatic affect on lethargy, especially with me.
I mean, if you are not feeling well, it affects everything, so I understand it. But I’m at a loss to understand how ozone relates to it. I also understand the effects of blood issues as well...
I have to conclude that medicine, simply has not understood these issues very well, and that’s where we are today.
OK....Interesting,,,
I watched enough of it to come to a assumption that would need to be fleshed out, but it appears that it’s not the Ozone per say, as a gas like CO2, that is having a positive effect, it is the bodies’ reactions to it. It’s apparently a secondary effect.
For example, I am a smoker.
If I go to a doctors office and he/she does blood tests, one of the things they will find is a high red cell count, much higher than normal. They actually say that I will feel a lot better if they remove some blood.
This is due to Carbon Monoxide and CO2 in the blood, and that stimulates red cell production to increase the O2 availability for the cells. Even though they had enough to operate properly.
It appears that Ozone may well be doing a similar thing and perhaps stimulating additional processes that for some reason in some people may not be adequately performing.
tanks, I’l lcheck that out- wonder if just drinking ozonated water will do the same- probably not htough-
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