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 ...
For about 15 years, I was lethargic, foggy headed, and dealt with muscle and joint pain that I didn’t even realize was as bad as it was until it was gone.
About a year ago, I was rehabbing a rental property and I was googling around to find something to definitively get rid of the ‘rental smell’ that I couldn’t get rid of. What I found was an ozone generator. I bought one for ~$70 and it worked so well that I was shocked. So, I started researching it even more. I came across a machine to ‘ozonate’ water, where one bubbles ozone into cool/cold water for 10-30 minutes. To my surprise, this was being done, not only to clean things, but for people to DRINK!
I thought that was rather insane at first, but the more I read, the more interesting the idea was. The list of things people were treating with Ozone was so long that I really didn’t believe it at all. There were people claiming to have beaten cancer with it. I read everything about it, both pro and con and I decided that the ‘cons’ seemed really pretty lame and baseless. Maybe it wouldn’t do anything for me, but trying it was a $75 investment for the machine with zero expense after that, so I took a shot.
When I tried it, I experienced what I believe was a candida die off, which made me feel like I was going to die for about two hours. However, I could feel more ‘awake’ even as that was happening. Three hours later, I was having another glass of ozone water and feeling fantastic.
Since then, I wake up and have ozone water first thing and several times throughout the day. I have had a complete reversal of all the ‘brain fog’, fatigue, joint/muscle pain, and lethargy. I have an incredible amount of energy for the first time really in my adult life. Before, I always had to force myself to do any kind of exercise and now, I crave it. I’m stronger, healthier, and more alert than I can ever remember. I’ve lost over 50lbs with only two changes in my diet: no gluten, no vegetable oils. Other than that, I eat what I want when I want.
In addition to the ozone water, I now also do an ozone sauna after working out, which I believe has also helped tremendously. If nothing else, it makes me feel awesome.
You can find a water ozonator on Amazon, which is a good one. I have that one and use it for my pets’ water bowl. (It has cured my cat of an allergic reaction that no vet could figure out. Without steroids, she used to scratch herself bloody. Now, she’s been steroid free with no scratching for more than six months.)
There is another one at foreverozone.com, which is the one I prefer. It’s cheaper than the ‘fancy’ ones, but produces a lot of ozone and is capable of doing medical grade ozone if you desire.
There is a facebook group called ‘ozone to health’ where there is very good information, though in my opinion, it is not necessary to spend as much money as they suggest to get started. I did it with less than $100. The sauna setup cost me another $150. I do want to upgrade to a fancier ozone generator at some point, but it’s more of a luxury than a necessity.
I don’t know if this info will help you or not, but I figured I’d share just the same. I feel like a kook talking about it, but I also feel guilty when I don’t tell someone who is suffering and might benefit from my experiences.
Doctors weren’t worth a bucket of warm spit for me either. Check my post 41 to see what I did.
[[If I exert myself at all I don’t recover for days.]]
Exactly- the way I describe it is it’s like we’re running on half-charged batteries, and when we overdo it, it drains the rest of the energy, and we have to recharge for days just to get back to our usual crappy ‘normal’ feeling of 1/2 charged-
I get real shaky, nauseous, my muscles hurt in arms, legs, back, neck etc like I’ve bruised them all, and my thinking gets even worse when I’m run down and recuperating
This condition, whatever it is, is horrible, striking many right in their prime of life, and completely making our lives a living hell- it’s like having cancer for crying out loud- or emphysema- the weakness is horrible!
[[I have been to a couple of different doctors and don’t know what else to do!!]]
The only advice I can give is either try to make arrangements to go see a specialist in Chronic fatigue, or to just accept that your life is changed forever- a VERY VERY hard thing to accept- especially being in prime of life- I doubt even a Chronic fatigue expert can help much- but if you have the money and ability to do so, it might be worth it- I’ve just come to the point where I just accept it-
I used to work a very long day then go to class for 2 1/2 hours then still get home and work in my garden till 10 pm with the spotlights on. I was always on the go. Not anymore.
Interesting!
Ozone ,,,,is a oxidant. As such it oxidizes a variety of heavy and light metals.
Have you ever looked into metal issues...copper for one example..
It’s a know fact that many individuals have issue with a variety of metals.
It may help- I’ve read lots on ozonated water- but I have to be really careful as I have an overactive immune system which attacks the body- and anything that stimulates the immune system is a no no for me-
I’ve researched the heck out if this, and tried so m any things, it’s amazing I’m still alive lol- I’ve drank stuff so nasty it would peel the paint off of aluminum- stuff that smelled so bad the dog hid in a corner every time I made it- (This was all before I learned I had to watch out for immune stimulating concoctions- I may have actually done myself damage by some of the things I took and tried- as I’ve had to have numerous surgeries due to progression of my disease)
Anyways- it might be worth a try for some-
Lyme transmitted by rodents too. Important if you lived in.urban, especially port city. Caused by spirokete similar to syphilis and similar symptoms especially in late term. Memory , equilibrium etc .
Connecticut has most Lyme friendly and educated physicians as it began there
years ago, hence the name.
For those who have symptoms like those at the link in this report, try to find an MD who will buy into the new definition of the illness, especially including orthostatic intolerance, i.e. intolerance of sitting or standing for very long.
https://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
By the way, the article might not be entirely up to date as I believe that the PROPOSED new name, SEID, “Systemic Exertion Intolerance Disease” was rejected and ME/CFS was decided to be retained for various reasons.
That is definitely a possibility. I did live for years in an old apartment building in NYC with ancient pipes.
Of course, first you have to be screened by your MD for the zillion things that are NOT ME/CFS. ME/CFS is a “diagnosis of exclusion” meaning you get it only after they have excluded everything else. There is not yet any actual POSITIVE TEST for ME/CFS.
Although more and more there ARE signature confirming tests of things such as REACTIVATED VIRUSES as in my case...a whole pile of them for which I take a pile of Valtrex!
Wow...well, I wish you the best of luck in finding something that works. :(
Not so much the pipes,,,,,
Various metals are in foods, the air we breathe, and yes in old structures that may have been repurposed into living quarters..
For most people, we have know tolerances for these contaminants, and the epa keeps a eye on their set levels of what is ok...but some people have little or no tolerance because of systemic issues where they may lack some protein or whatever or have a inherited digestive issue and this can affect their immune system Reponses to various environmental contaminates that are innocuous to most people but not to everyone.
It’s jus common sense, but this is out of the box for a trained doctor. Worse than that, today they have very little time to spend on a diagnoses, and if they get it wrong, it is sometimes better to do no harm.
Last year I finally went to the doctor for a complete blood work up. Tired, chronic fatigue, just felt like hell all the time. I thought it might low iron or such. A few days later, I got a call from his office to tell me to get some Vitamin D3 asap. I was very low and cramping muscles along with fatigue are symptoms of low D3. Who new. Not anemic at all. And yes, chronic fatigue sucks.
ping to my reply re: my condition and treatment at NOVA U. ME/CFS clinic in Davie FL
Just had my annual thyroid ultrasound follow-up to my benign nodule biopsy that was done three years ago...
All part of a competent ME/CFS screening work-up!
Sometimes it takes the child or friend of folks with big bucks getting a horrible disease for the money to target an orphan illness like ME/CFS.
A couple of years ago, wealthy folks named Whittemore whose daughter had the illness up a lot of money for ME/CFS at the time that it was thought that a retrovirus, XMRV, was the cause of the disease. Mr. Wittemore was a Nevada big-wig who gave a lot of money to Harry Reid and ended up in the slammer, unfortunately!
BTW....In the case of copper pipes. Copper forms a oxide coating that generally prevents copper from being particalized in a form that can be inhaled or easily distributed.
But that does not eliminate the natual copper that exists in the soil and some plants pick it up and it can be in the air as a derivative from various combustion processes.
I only mentioned it because ozone is a major oxidizer..
I’m just a layperson on this issue but I’m pretty good at trouble shooting. For example, I have a dog that has a deficient digestive tract, due to what I do not know, but the person I got him from as a puppy thirteen years ago became aware of this genetic trait and upon the vets advice, wrote it off as a grass allergy.
It was not long, couple years before the dog began showing symptoms, loss of hair, lethargy, constant scratching. and he stunk like a fish.
It took me a couple years of trial, error, misdiagnoses before I landed on the cause and on a supplement to relieve the symptoms.
He is 13 now....he would have died or been put down like all his siblings and his sire a long time ago. It was death by fungus and bacteria that the dogs immune system could not deal with effectively.
I never told the vet because he had already done his damage by not looking into this as I did, but it’s a good example of what occurs in human medicine.
Another good one is my own immune system. I discovered though trial and error that I cannot take a over the counter medicine known as Naproxen or alleve.
It interferes with my immune response to common bacteria that is everywhere in the environment and causes me to develop infections. (mostly Staph)
I can take other nsaids, like ibuprophen, (Tylenol does nothing) but I cannot use that one compound. The results are the same each and every time. Infected nodules....on various parts of my body...many seem to be related to lymph nodes.
So that’s just me....otherwise I have a fantastic immune system..Not a single cold or flu in decades..(but it is eating my 65 year old joints)
Look into Oil of Oregano. It is an anti-viral.
It is a lot like Fibromyalgia, researchers typically look at pre-post menopausal women as 80% who have FMS are women. Most also have a thyroid issue.
When I hit puberty my muscles became stiff, but not painful. It was not until I had the drop in hormones at menopause that FMS became full blown. Burning muscles, extreme stiffness, occasional fevers for no reason. It was a Syndrome back then, or you were a hypochondriac. Now they know it is a auto immune disease. What they offer to treat symptoms only is Elliptic drug meds that have high side effect ratings of 50%, and what you hear on the commercials are a bare example of the side effects. Lyrica and Neurotin or it is called Gabapatin (sp?), are the 2 most common ones. Both shot my BP to heart attack levels with just 2 pills. Needless to say they were recycled so they would not go into the land fills or water supplies.
It is a ‘Orphan’ disease and Big Pharma is not going to put much funding into it as to small a percentage of the population have it.
But you are looking at 10 yrs or more before such a drug will be approved.
Suggestion as I have learned from my years on FR we are all skeptical of Big Pharma a book available from Amazon, not expensive: FIGHT FOR YOUR HEALTH BY BYROM J. RICHARDS. It will tell you how Big Pharma is selling us out for profits, about the poisons that the dyes they use, and other medical treatments that are pure Horse Manure. Killer STATINS, OP DRUGS that are badly researched, and terribly harmful to the human body.
You don’t have to be a genius or a scientist to understand what he has exposed. Now it is important to remember that over half your immune system is in your gut.
The biggest issues with most modern medicine is GERD, constipation, nausea, diarrhea, loss of Libido, hair, and memory issues. I’ve seen what the Cholesterol drug Welchol does to both memory and hand tremors in the elderly. I’ve experienced the GOUT pain just 5 pill caused, and the normal dosage is 6 big horse pills per day.
I have drug INDUCED OP, tomorrow I will have a full Cardio work up including a chem stress test the Cardio suspects an Enlarged heart that goes with the erratic BP caused by PAIN. Then Friday I see the Hematologist to find out why my red blood cells are enlarged. Then I get to play Russian Roulette—human guinea pig until they find one I can tolerate. I can’t tolerate the OP drugs and they are one of the badly researched poisons in the book. Every OP drug is flagged by the FDA for A Fib, jaw degeneration or dead jaw. Foreteo carries the highest warning a Black Box of not only the other warnings but Bone Cancer, and reverses itself after the 2 yr course IF you can tolerate it. Are the risk worth it? http://www.healthcentral.com/osteoporosis/c/73/2677/forteo-risks/
Selenium is also necessary along with COQ10.
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