"Exhaustion", Retrovirus (XMRV), Chronic Fatigue; Dr Oz, December 3 (600 reads of this blog Winter of 2009)

I initially covered this in a blog which had 600 reads over the winter and spring of 2009/10 before I copied it over here and made some modifications for 'the archiving' of it to be here as a resource long-term.  Please consider spreading the word that this is a resource online for everyone to utilize --  what I basically did was transcribe/highlight/summarize what was covered in 2009 on the Doctor Oz show AND once the clip was on YouTube, provided the link for that as well, for those who want to spend 15 minutes seeing it for themselves...   Time is such a precious commodity for so many so people can scan something, read more indepth OR also follow the link and watch the YouTube. 

Naturally, we want people to access the information on Doctor Oz' website as well: Please note the website address is 'doctoroz.com' and not 'droz'.  I've never been sure what they post and where and then change, so I'm sticking with the link on YouTube but also reminding folks of Dr Oz increasingly robust website!  (I encourage you to watch, as it has an excellent graphical/ animated representation of how retroviruses happen and the woman who talks about when she was mishandled by ConMed (conventional medicine) related to her having XMRV and chronic fatigue syndrome shows the harm done to people who are still trying to be strong and NOT cry -- very emotionally powerful stuff).   

I have done a combination of writing what is said exactly and summarizing content:

Dr Oz: "We have a fun show for you today because we're going to talk about something that millions of women suffer from: exhaustion.  But it might not have anything to do with sleep at all, it may be infection caused by a new retrovirus that could be inside of you right now ready to strike.  What is a retrovirus and how

"There's a brand new virus in town, and it has your doctor very alarmed.  It causes debilitating symptoms that can last for years.  There is no cure for it.  And most shockingly, it is now linked to one of the most baffling and misdiagnosed diseases in women."  Dr Oz continues to communicate that  

The virus is called XMRV and it belongs to a small but stealthy family of viruses scientists call 'retroviruses'.  Here's why they are dangerouses.  Viruses such as the flu go into your body and then leave, but retroviruses worms it's way into your DNA and then stays there forEVER.  The best known of the retroviruses is HIV which causes AIDS.  Others have been linked to leukemia and lymphoma.  But HERE's the SHOCKER:

Scientists say that newest retrovirus ( was found in more than 95% of a sampling of patients previously diagnosed with Chronic Fatigue Syndrome.  

Insideous and contageous retrovirus was also found in nearly 4% of health Americans.  That means that 

10 million of us could already be carrying this retrovirus deep inside of us putting every one of us at risk with it for developing chronic fatigue syndrome. 

Could this be lurking inside of you?  Do you know the symptoms?  Do you know how to protect yourself. 

Could this retrovirus be the secret reason you are exhausted?  Then he set up that they'll go over the warning signs and what to do about it.   He introduced guest expert Dr. Donica Moore (MD, woman's health expert and authority on chronic fatigue syndrome)

Dr. Moore:  This is a groundbreaker.  We can look at the millions of women (and men) who have this and say withi confidance 'this is not all in your head'.  We know you don't 'depression' and this is not a 'midlife energy crisis'.  What we do know is that this is a serious, potentially debilitating, neuro-immune disease that has an infectious component. 

She goes on to say that what concerned her the most when she heard about this is that we know it does not transmit through the air, so we can 'rest assured' about that.  We CAN detect XMRV in the white blood cells of people who have it, so there is the potential that this could have impacts on the blood supply. 

Dr. Oz then reviewed how a retrovirus works (the virus goes into the 'blueprint of the cell/DNA, and it 'snaps it up' and becomes who you are.  He has a nice graphical example presented behind them of it).  Dr Oz also stated here that they "Didn't know this existed in 'organized medicine' until recently."

He then moves rapidly along to ask Dr. Moore about symptoms.  She states that if a person is fatigued and they'd feel better with a three day vacation and a babysitter, it's not chronic fatigue.  "Chronic Fatigue Syndrome" is a very specific clinical syndrome -- there is no blood test, but there are clinical criteria:

1. Six months of a new-onset fatigue that is persistent -- it may be relapsing/remitting, but it is NOT relieved by rest or attributed to any other medical or social condition, such as having a baby.  Dor Oz interjects and takes over the list from here.  Extreme fatigue even after a full night's sleep.
2. Pain in the muscles, joints, headaches.  There is a chronic pain syndrome that goes along with chronic fatigue syndrome.
3. Significant memory loss.  "Brain Fog" as Dr. Moore calls it.  "It's not forgetting where you put the keys, it's forgetting what the keys are for"

This is a condition seen 2-4x as commonly in women than men.  So while women maybe are coming to doctors more often than men, they also appear to have more occurrence.  (see more information at the Dr Oz. website). 

They then had a woman named Gina who was one of about 300 participants in this 'groundbreaking new study' that the results 'just came out about' (ABC aired something on their morning show with one of their medical experts in early October) on who was previously very active and proactive about her health.  She explained what many we know at Lumigrate's Forum areas (and facebook fan pages), which has been identical to what we found two years ago in the previous live educational forum I co-created and lead with Dr. Chris Young here in Grand Junction: Most of us went on a scary and expensive wild goose chase going to a physician looking for assistance and being referred to one specialist who wouldn't be able to help, then on to another, back to primary care -- round and round. 

This concept is presented by Dr. Young in our free video here at Lumigrate.com on Health Management.  I encourage everyone to take the time to download and watch this one hour, $0 video.  The adjunct video about Insurance and Health Care would likely be beneficial to watch for most as well.  If you aren't sure if you and your equipment can 'do downloading', please read my previous blog which I've been told completely alleviates any difficulties anyone has had. 

What I felt really concerned about is that obviously for several years now, I have realized that the providers and patients involved in these issues are getting into a quagmire -- that's the purpose of Lumigrate.com -- to teach YOU how to navigate your way out and offer a place for many hands to come and grab the oars and steer the boat of health in a better direction. Overall I personally have had the benefit of being proactive and tenacious and moving to a place with exceptionally progressive doctors and in a state which allows me to have health insurance even though I have a condition with deems me 'uninsurable'.   In Gina's case, even knowing she had been in the study and had the XMRV virus, the doctor she approached referred her to psychiatry.  Unless you have a mental health provider who is aware of what this type of medical condition is and the many components to treatment (such as are offered at Lumigrate.com via our 'integrative health model'), this could be a dead-end.  

I've found many people engaged with Lumigrate are finding success when they utilize a model such as ours, which includes nutrition and supplementation, pharmaceutical medications when necessary and properly chosen and prescribed and looks at the body/mind/spirit whole-istically.  (Holistic is the proper spelling, but it's fun to break the word up as done here.).  Gina's trail of referrals to specialists took her to believing she might have a type of cancer or even HIV at one point. She revealed she was close to suicide.  I spent about a month in 1995 between suspicious MRI and lumbar puncture then results thinking it was looking like M.S.; naturally I did not want that diagnosis but to be told by the neurologist she had no idea what it was when it wasn't M.S. was disturbing as well.  (I then pursued food allergy testing via a progressive M.D. who had a small integrative clinic and eliminating a few foods made a tremendous improvement).  

Gina gave a most heartfelt and strong confession of how difficult it is to feel so fatigued and know that you have to get out of bed, work to pay your bills -- there IS no calling in sick because you're feeling like this ALL the time.  (It is comparable she and most say, to how one feels when they have the flu.  I'll attest to that except I had a fatigue to the muscles that was beyond anything I ever have experienced when having the flu and in the mornings literally would not be able to get out of bed until about 9 am). 

I commend her and the show for having the wisdom to bring up and 'integrate' into the discussion many of the points they did, including that as a string of doctors see they cannot find what is 'wrong', they will attribute it to something outside of their realm of expertise.  I was fortunate that the MD who I consulted about food allergies said 'You need to see how proactive you are and not let anyone tell you this is in your head or you're doing this to get attention ---- doctors say that a LOT to patients".  I'm very fortunate to have heard that and to never have a provider dismiss me, except for in the years when 'they' had me on a lot of Rx medications and I was considered 'complex' and too difficult to fit into the timeframe of an office visit timeframe.  Many times they didn't exactly hit things right and for years things languished because not enough doctors know enough about any of this 'stuff', but at least I wasn't made to feel like it was 'in my head'. 

Gina clearly was angry about being referred to 'a shrink' -- But if that 'shrink' were knowledgeable about what chronic pain and fatigue conditions are caused by, that actually was a good referral! More than likely there was something that provider could have done as 'part of the team' to help get her health back in a better direction, even referring onto someone more appropriate.  That's the way 'the system' works.  So getting everyone angry at the doctors who were doing their best isn't really going to help, but us ALL helping educate the ones we have access to will.  So that someone like Gina has an easier/better route in the future. 

I hope that as they continue to make more people aware they also provide people with the tools of education and empowerment about what our home page 'You' model shows:  as Dr. Oz said today: "If you think this is something going on with you, don't let anyone talk you out of it."

If 10 million people have it and half don't have symptoms, it tells us that it's lying dormant.  There's something that seems to trigger it:  So how do you get tested.  There is a test available that is $400 and can be ordered online.  You then get a Rx from a doctor to get a blood draw and sent to a lab, and we're not sure if insurances will pay for it or not.

There are antivirals on the market now due to our investment in HIV/AIDS research, so thinking of that as paving the way.  Now we need CDC, NIH, drug companies, anyone who needs a research project to focus on this retrovirus and medications that can help, not only for those millions that are infected now but those in the future that will.  95% of people say they have something that triggers the onset, like an illness, it was stated on the show, and that factor is an important consideration. 

Nutrition -- none of the diets have been shown to help except a good balanced diet.  Many people take salt tablets who have this, ... power drinks....  Patients with brain fog may benefit from omega-3s DHA 400mg a day and people with GI symptoms may benefit from probiotics. 

Sleep is absolutely essential, so sleep hygiene -- things like having an hour of darkness prior to bedtime so the brain produces melatonin.  These tips are at their website (www.doctoroz.com [1]).  He noted that people with CFS have difficulties with normal sleep. 

Exercise... even if walking to the mailbox slowly to keep muscle strength and flexibility to keep up with this illness.

Blog on Lumigrate about how to download video if you don't think you know how (it's very easy if you have broadband or high connection speed and a fairly recent computer:

www.lumigrate.com/blog/how-get-video-lumigratecom-documentation-comes-easy [2]

Link to Dr. Young's video on Health Management: www.lumigrate.com/product/health-management-dr-chris-young [3]

Link to a portion of the Dr. Oz show which is on YouTube (I initially posted this in early December and it's still there in late July 2010 so I'll presume it's here to stay!): www.youtube.com/watch [4]

Comments

Sat, 07/31/2010 - 10:33am

#1 [6]

Mardy Ross

Title: LumiGRATE Poster - Top of the Totem Pole

Joined: Feb 16 2009

Posts: 2032

My Unique (??) Background re: CFS and 'retrovirus'

I understand chronic fatigue syndrome well -- 20 years ago I succombed to a 9 year "up/down but overall gradual decline from wellness" to having what in those days was called 'chronic Epstein-Barr virus'.  I had gone most of my 20s becoming progressively bothered or 'allergic'/sensitive to cigarette smoke, cats, and the fragrances in products and on people or even the photocopier at work.  I was having headaches, gaining weight (then losing it when eliminating certain food types just using common sense -- "I'll just eat meat and vegetables and no starches" removed wheat, for instance).  I was and requiring more sleep and never really feeling vigorous the way I used to (or do now mostly).

I'm fortunate that my primary doctor in Fort Collins, Colorado knew that an Ear Nose and Throat specialist there had progressive information from National Jewish in Denver about what he thought I had going on when I went in to him regarding ear/hearing changes.  That doctor took one look at me and said 'I think I know what is wrong with you -- is it normal for you to have puffiness under your eyes? (which was not normal for me).  He ordered blood work that showed that my Epstein-Barr (causes mononucleosis) titres were high.  He prescribed some things that helped and told me that 'I know it seems impossibly hard, but the trick to getting better is to exercise'. 

My husband really picked up the slack in what I normally would do for the house and yard, I cut back to 7 hours a day of work (from 10-12 average) and one beautiful summer evening when he wen for his cherished walk around our neighborhood I decided to go with him -- just half a block, and come back.  I was really wobbly weak, but once I sat I realized at some level 'I feel better'.  So that began a very long journey of many longer and shorter walks and productive days over the last 20 years, AND my delving into health information in order to light my path to health and well-being.

So five years later, when I had a really different type of situation 'come on' and it appeared to be very much like multiple sclerosis and was tested as such with the neurologist saying 'well, I don't know WHAT it is' after $15,000 of ConMed (conventional medicine) which my insurance was billed for, I said 'could it be foods?'  She supposed so but had no idea who to refer me to.

I found my way to a progressive MD who did food allergy testing, but NOT the usual scratch/ IgE testing.  ANSWER given after one vial of blood and only $400 out of my pocket (which was after my $10,000 deductible for the MRIs ConMed/neurologist ordered and I agreed to becasue if it was MS there were drugs that could help slow it down). 

I'm continuing to be committed to helping providers find out about these concepts through information at Lumigrate which can be printed and faxed/given to others AND providing networking opportunities where providers can be featured on Lumigrate for the consumers or providers to find out about them.  You'll see I have created a list of who in my local area people can go to for competent help related to fibromyalgia and chronic fatigue.  The providers on Lumigrate who you see generally consult nation-wide with people as well. 

That's my story, and I'm stickin' to it! ~~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [5] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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