The “Kissing Disease” Linked to Some Adult Chronic Illnesses & Diseases

The Epstein-Barr Virus, aka the “Kissing Disease” or “Mono(nucleosis)” has been linked to several chronic illnesses and autoimmune diseases–including Fibromyalgia, Multiple Sclerosis and Cancer; according to an interview with Dr. Henry H. Balfour, Jr. MD, Professor at the University of Minnesota/Lab Medicine and Pathology Department.

Watch this news clip, courtesy of 11alive.com, which interviews Dr. Balfour as he explains his theory:

 

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Strengthening Doctor/Patient Relationships

0328eaa9-e829-4681-a268-1485280d3bd0_400_282It almost seems a lifetime ago that I was fighting for answers for all of my confusing symptoms.

For years I waited patiently for my doctors to come up with an answer to what was happening to my body, and nothing really happened. Well, actually, one particular doctor especially did keep trying to send me to a psychiatrist because, of course, my symptoms were “all in my head” (and a few other choice phrases). I was in my 30’s, and according to them, “too young” to be having the types of complaints that I had.

In fact, if it wasn’t for a doctor telling me to look up Fibromyalgia online that April in 2006 (that he finally diagnosed me with–then proceeded to tell me it was a “throw away diagnosis”)–I probably would have been a permanent resident of a psychiatric hospital by now because of them.

Literally. Pretty scary, right?

When I finally learned about the vast amount of quality medical information that was available online, and realized that Fibro didn’t answer all of my questions, I started researching my symptoms on my own.

It was about six months later that I learned my primary physician had lied to me about not having Multiple Sclerosis–because he never actually tested me for it. Had he tested me for it back in 2005, I believe that I may not have progressed with my illness(es) as much as I did after the meningitis attack. After he told me that I didn’t have MS, I even asked him if I was brain damaged because I wasn’t able to concentrate, comprehend a lot of things; my speech would slur and more. His reply was simply “no”, and he left the room.

Researching my symptoms changed my life for the better. It wasn’t easy at first–most doctors don’t appreciate a patient doing their own medical investigating. In fact, a lot of them frown upon it.

istock_000016285548xsmallBut, some doctors actually do appreciate it as long as you are well informed when you present it to them.

When I realized that my doctor(s) weren’t paying proper attention to my medical issues, I finally got away from the entire medical group four years later (it would have been sooner had I not had a case already pending about my disability). You could say that the treatment that I, and some of my family members received could have been considered malpractice because of the undertreatment and misdiagnoses that were taking place on a nearly consistent basis for several years.

Since handpicking my own doctors I have been diagnosed with Multiple Sclerosis, Systemic Lupus, Ehlers-Danlos, Epstein-Barr–the list is a page or two long so I won’t bore you with the details.

Check out the link to the article in the October 2016 issue of Neurology Now that agrees that patients want more input when it comes to their health. It offers some great tips to have better interaction with your physicians – and hopefully get a more timely diagnosis.

Good reading, and good luck with your research. ❤

Chaos Behind A Smile

I read Susan Williams’ account of her husband, the late Robin Williams’s final months. It’s heartbreaking, yet so familiar at the same time if you live with a chronic illness.

Mr. Williams was a warrior whose mind, body and spirit could take no more. In life, he inspired and filled millions of people with joy and laughter as he performed his many wonderful characters throughout his career. In many ways, his death will have meaning that he probably never anticipated.

66th Annual Primetime Emmy Awards - Show
Photo credit: Lester Cohen/Wireimage

Mr. Williams was living with an invisible illness called Lewy Body Dementia, a neurologic condition that causes a form of dementia that creates the same underlying changes in the brain as Parkinson’s Disease and Alzheimer’s. He was officially diagnosed postmortem. Even though he succumbed to his illness on his own terms his widow, Susan, explains in detail the journey that led to the final months of his life. She showed how difficult it was for him, and for his family, to go through his journey of confusion, cognitive issues, temporary paralysis and more.

Everything the public never saw.

She showed us, through the eyes of a caregiver, the life of a human being that was living with a debilitating chronic illness.

PLEASE, read Mrs. Williams’ story. I promise, it will open your eyes – and your hearts – to a world that healthy people, luckily, never have to experience.

It will teach you how easily a smile can fool the outside world into believing that a sick person is fine.

Do me a favor. After you read the story, share it with your friends and loved ones. While you’re at it, give them a hug – remember how precious life, and good health, truly is.

Rest in peace, Mr. Williams. Your light will be in our hearts and laughter for eternity.

To learn more about Lewy Body Dementia (LBD), click here.  

To donate to the Lewy Body Dementia Association, click here.

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Some notable people who suffered from Lewy Body Dementia include:

  • Actress Estelle Getty
  • Music industry icon Casey Kasem
  • Athlete Stan Mikita
  • Artist Don Featherstone, creator of the iconic lawn flamingo
  • Former NBA head coach Jerry Sloan
  • Actor Robin Williams