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Diagnosis of Lyme Disease

Laughter, the best medicine

Do you journal your experience of Lyme? I did, and though it's painful to read now, I am glad I captured something of the emotional and psychological dimension while it was occurring. I wouldn't have remembered how I scraped the bottom, especially in comparison to the healthy high that is my new normal.

Shortly after diagnosis, I was put on a cocktail of antibiotics that nearly killed me. Every day was a challenge. No, every breath was a challenge. I never knew that severe pain could be a 24/7 ordeal. The physical pain was torture, but it was the accompanying emotional pain that pushed me over the edge into despair. And then, miraculously, and none too soon, pushed me out again.

From my journal: Lately, I feel emotionally raw, and a bit overwhelmed by a radical compassion for the suffering in this world. I am tremendously grateful for my friends and family. If not for them, I would be dead. My heart breaks for anybody who doesn’t have people to lean on in times of crisis.

I was falling apart—in mind and body. Lyme was bitch-slapping me right out of the stratosphere. The illness had triggered some mysterious process that was stripping me of everything that wasn't absolutely necessary for my immediate survival—from certain foods and drinks, to relationships, to habits, to clothes that I couldn't wear (too itchy, too big, too small), to possessions, desires, and even including my lifelong dreams. I was a musician who couldn't practice, a writer who couldn't string a sentence together. I wasn't left with much that I could recognize of my old self. I was being peeled to the core of whatever ragtag collection of trinkets might be left of my inner self. And inside, things were no bed of roses. In there, I discovered I was capable of really feeling my own pain, and other people’s, deeply, probably for the very first time.

But I could laugh—and that's why God made comedy.

Each day, Evan went in mad pursuit of a (hopefully) hilarious movie that we hadn’t yet seen. We'd start it up before bedtime, and cross our fingers it would work its magic.

While I was laughing, I wasn't thinking about my pain. Pain did not exist! Those precious moments were my aim, my sacred chalice. For a few brief seconds, I wasn't trapped inside my misery. I was free. And like cracking a window for fresh air, I believe healing can take hold in those small openings. Episodes of Mystery Science Theater 3000 were manna from heaven.

But you can’t fake it. That’s the trick. Your funny bone has got to be genuinely tickled. You must actually be laughing, not just ha, ha, faking it. Bowled over, tummy-clenching humor--miracle of miracles. I felt like I’d discovered the Rosetta Stone.

Most people suffering with longterm Lyme symptoms realize that addressing the psychological component of the disease is equally as important as treating the physical one. The two cannot be separated.

Homework assignment: Watch a comedy tonight.


Yolanda Foster speaks about Lyme

"The light had gone off in my brain." Yolanda Foster speaks about Lyme.

“We live in the most extraordinary country, with the best doctors in the world. But the truth is, we don't have proper diagnostic testing,” Real Housewives of Beverly Hills cast member Yolanda Foster told the audience at the Gala held for the Lyme Research Alliance on April 6. The LRA honored Foster with the Star Light Award, in recognition for her advocacy and for serving as a role model for people suffering with Lyme.

In her acceptance speech, Foster describes her frightening decline from “being an outspoken, multi-tasking social butterfly, to being trapped in a mentally paralyzed cocoon.” Doctors did not find any indication of Lyme disease in their standard blood tests, so they missed important clues. She knew something was wrong, intuiting that it may have been an infection in her brain. But doctor after doctor misdiagnosed her, advising her to cut back on her busy schedule. She was put on subscription drugs.

“Sleeping pills, Adderall, steroids, and anti-depressants,” she recalls, reciting the litany of drugs she was given. “[But] I was so
so not depressed,” she adds. Increasing frustration and annoyance were closer to the mark.

After a two-week stay at Cedars-Sinai Hospital in Los Angeles that achieved nothing, Foster returned home to bed. Hopeless, and believing that in her native Europe she might find a doctor to help, she to embarked on the long flight from California to Belgium. After a test showed spirochetes in her brain, she finally received a correct diagnosis of Lyme Neuroborreliosis and co-infections.

Thankfully, zeroing in on the pathology leads to treatment, but as anyone who has been through this crazy-making process knows, Lyme treatment is a double-edged sword. To begin with, it is not so cut and dry. And antibiotic therapy also causes Herxheimer reactions which can be as debilitating as the symptoms themselves. Friend Suzanne Somers led Foster to the Sponaugle Wellness Institute in Clearwater, Florida. Foster reluctantly left her family to go for a 6-week treatment. She reports that now she feels about 80% back to normal.

The LRA event raised more than $1 million to fund research for finding a cure for Lyme and other tick-borne diseases. Doctors Steven Schutzer, M.D., of the University of Medicine and Dentristy of New Jersey, and Mark Eshoo, Ph.D, director of new technology at Ibis Biosciences, were also honored at the Gala and received an award for their significant contribution in research and treatment in the quest to find a cure for Lyme.

Please watch Yolanda Foster's speech.

Interview with director of the Lyme Research Alliance


Alzheimer's and Lyme Disease

Alzheimer's and Lyme share many symptoms, an unfortunate circumstance that can result in misdiagnoses for elderly people whose caregivers suspect senility. The Alzheimer's Disease Association lists changes in mood or behavior, disorientation of time and place, and an inability to concentrate among the warning signals of the disease. Symptoms may also include problems with abstract thinking and difficulty performing familiar tasks, such as buckling a belt or preparing a simple meal.

Brain dysfunction or dementia, what used to be called 'senility', are commonly recognized as disabilities that afflict older citizens. Other potential signals of Lyme are joint pain, dizziness, and muscle aches, which are common complaints among seniors. For generations, the prevailing notion has been that old people simply tend toward absent-mindedness, arthritis and fatigue. Therefore, older people's symptoms are less likely to signal anything out of the ordinary to a doctor or health care practitioner. Doctors may easily miss the warning signs of Lyme, instead giving the patient a catch-all diagnoses such as Alzheimer's, heart disease or lupus. Seniors have been misdiagnosed with Alzheimer's, when the real problem is Lyme disease.

Antibiotics are prescribed to kill the Borreliosis bacteria, the bugs that cause the effects of Lyme disease. However, undetected by medical professionals, the patients are unlikely to get the medicine they need. Without proper treatment, Lyme can have devastating effects.

Q-RiBb is here

Q-RiBb, the newly patented Lyme test, is starting to get the kind of coverage it needs to become well-known. The word on the street is that the test was formally introduced at the Lyme conference in Philadelphia in October. Over 9,000 people have been tested this way. In sharp contrast to the lengthy wait (two or three weeks or more) for the results of the unreliable Western Blot, all of them received their diagnosed with Lyme in just one day!

The difference between the two tests is very easy to understand. The Western Blot tests for antibodies. The Q-RiBb tests for antigens, the bug itself. Simple.


All In Your Head

File this under the heading It's All in Your CDC Study:

This week, researchers for the U.S. Center for Disease Control (CDC) published a study that may go a long way towards validating Lyme disease sufferers who have been dismissed or ignored by their medical doctors. The study states that Lyme disease results in acute long-term disorders, or as authors Jill A. Livengood and Robert D. Gilmore Jr. write: “...the organism is able to evade the host’s immune defenses and mobilize to various host tissues eventually resulting in arthritis, carditis, and neurological manifestations."

While this study may impact physicians' attitudes toward patients (let's hope it's a positive impact), it can't undo the damage done to myriads of Lyme sufferers over the years whose doctors have hovered in their examining rooms with one hand on the doorknob, rolled their eyes and muttered, “it's all in your head.”

Thank you, Livengood and Gilmore.