"... the depth of ignorance is staggering." Alasdair Crockett(1968-2006)
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"When wealth determines access to the public forum, it causes distortions."
"To take just one of many examples, for the past several years , the need to eliminate the inheritance taxes on the wealthiest 1/100 of 1 percent of the families in America (the only taxpayers who are still subjected to it) has been treated as a much more important priority than the need to provide at least minimal access to health care for tens of millions of families who currently have no access to health care coverage at all." From "The Assault on Reason"
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Looks like they got a copy of the MRI results. This was written at the bottom of the page:
One white matter lesion - change seen in lyme disease (neuro)
Ok, now what? And it still doesn't address the second UBO (unidentified bright object) the radiologist didn't mention but I can see on the same MRI. I've been immersed in neuroradiology teaching websites the past few weeks so I can at least tell a hawk from a handsaw when the wind is southerly. (pardon the paraphrase)
I see the lyme doc on the way back from Brimfield. Think I'm going to print out a copy of the pic that shows both UBOs and ask them about it. On FLAIR imaging - one in the left lentiform nucleus that they mentioned. The other one that I see is in the right caudate head - same slice.
Don't know if this is going to make a different in my current protocol or not. I'm kind of afraid it might mean IV abx because they cross the BBB (blood/brain barrier) more easily. I really don't want a picc line or a port. The idea of either scares the bejeebers outta me! Need to look more into this.
Of course, the little voice in my head says "well, if the radiologist didn't mention the second UBO, what else didn't they mention?". Don't know if it's instinct or paranoia piping up. Bear in mind that I'm also the one that found the nodules in my right thyroid lobe by examining the ultrasounds a good 6 months before the radiologist bothered to mention them.
Gah! Really wish I could stop doing this to myself.
Edit: I just did a background search on the guy who reviewed my MRI. Turns out he specializes in ultrasounds. Neuroradiology isn't even on his list of qualifications! What the *bleep*!?!?!?
Going to track down a qualified neuroradiologist and get another opinion on this scan. I'm so fed up with incompetent doctors!!!!
Ahhh, I want that for you, too. My prayers go out to you. I find the warmer weather is good for my body. My doctor said that the blood circulates better. I hope that you have a relief of your symptoms this summer......
How are your legs now? I have thought maybe they missed a diagnosis of polio or bone cancer. Have you tried reflexology? Do you toes curl under if you stroke the bottom of your foot with a pen or a cuticle stick? They should and it is cause for concern if they do not. Reflexology seems to be helping me with that but not the pain.
Are you sure it was 98.6 before you got sick? My sister also has a normal temp lower than 98.6 and does not have Lyme. Docs get excited if it is above 99 but not below 98.6, so maybe it was never mentioned on rountine measuring. My temp has always run low, and I do have Lyme now. My personal theory is that Lyme is more apt to get a foothold in people with a normally lower body temp. In the lab, the organism grows best at 90 degrees, so prefers a low temp to thrive. There must be individual differences for some people to develop Lyme from tick bites and others do not, and I think temp is one of them. Lyme docs seem to think that Lyme caused the low temp, but I think low temp gave a chance to Lyme to become entrenched. Try saunas with temperature readings every 15 minutes to try to bump your temp up, even temporarily, to create an inhospitable environment for Bb.
TEMPLE TERRACE - From Doloras Perrone's perspective, Michael Cichon is performing miracles.
The Temple Terrace physician, who specializes in internal medicine and infectious diseases, has developed therapies that have improved the quality of life for patients with complex, incurable illnesses such as Lyme disease, amyotrophic lateral sclerosis (Lou Gehrig's disease), multiple sclerosis, fibromyalgia and chronic fatigue syndrome.
To further help his patients, Cichon also founded the Clinic of Angels, a nonprofit organization that helps chronically ill people pay for extensive medical treatments that are not covered by insurance plans and often drain families' financial resources.
Perrone was diagnosed about five years ago with Lyme disease, a tick-induced illness that left her battling severe flulike symptoms, joint swelling and, eventually, leg paralysis.
"I was on my deathbed," said Perrone, who was forced to quit a job she loved and endured severe bouts of homebound loneliness and devastating depression.
That was until the Carrollwood resident met Cichon, who did everything in his power to find a treatment that put her back on her feet and out in society, she said. Although there is no cure for the disease, Perrone is symptom-free.
"He's just an exceptional doctor who just wants to help people," said Perrone, who is now the Clinic of Angels executive director, not only as a tribute to Cichon but in hopes that others confronted with debilitating diseases can also return to living productive lives.
In November 2005, Cichon started the virtual clinic - one that operates online and is overseen by a board of directors from a variety of professions - as a means to raise money to ...
LymeBlog News Lexington, KY USA By Glenroy Wolfsen, LymeBlog Staff
Poems featured today: "Door" and "FREEING" By Glenroy Wolfsen
Second Thoughts is a column on LymeBlog News featuring poetry by Glenroy Wolfsen.
I met a woman through the Lyme disease mailing list whom I soon visited because of our common illness but more, a common attraction and sharing of lives. Our visits were intense and filled with love and support and adventure and the sense of a new life for both of us.
More visits began to show the devastation Lyme had done. She had already lost her husband and was about to loose her son, but more, she felt so lost in her symptoms that she was not afraid to loose even herself. This was to become a trial when I found her to be the servant of the illness that was slowly taking away everything.
And there even came the day I had to become another loss in order to protect my own well-being. I was to be yet another victim to her Lyme.
Door
Yes, I turned to leave
But those eyes had already burned their way into me
And I walked down the steps
Leaving her to face the closed door
But her arms never let go
Of that last tender goodbye
Glenroy Wolfsen
Second Thoughts: A column featuring poetry by Glenroy Wolfsen
Glenroy Wolfsen has lived a life filled with pain: of Lyme disease and the illnesses and losses of loved ones. But he has also experienced the profound pleasures of learning, teaching, music and academics.
Raised on a farm, yet schooled in music and religion (Master of Divinity) and with interests in religions, psychology, mind-body healing and Eastern Sacred Texts, Glenroy’s spirit shines through in his works of fine poetry and wise prose.
After regaining much of his health, Glenroy remains busy teaching, studying and writing several books: one about his life story, others with poetry. He is pleased to share some of his works with you in an ongoing basis here at Lymeblog.
Allen C. Steere, M.D., the researcher credited with the discovery of Lyme disease, will give the keynote speech and receive an honorary Doctor of Science at Ohio Wesleyan’s Commencement ceremony at 1 p.m. May 11.
Now a professor of medicine at Harvard Medical School, director of clinical research for Massachusetts General Hospital’s rheumatology unit, and principal investigator for the hospital’s Center for Immunology and Inflammatory Diseases, Dr. Steere received international acclaim after he identified Lyme disease in the mid-’70s. The tick-borne illness, named for the town of Lyme, Connecticut, where it was discovered, may result in arthritis, as well as nervous system disorders and heart issues.
For his pioneering work, Dr. Steere has received recognition from organizations including the American Lyme Disease Foundation, the National Institutes of Health, and the Albert Sabin Vaccine Institute. In 2001, he was honored as a “Research Hero” by the Arthritis Foundation.
Dr. Steere holds a bachelor’s degree in music from Columbia College in New York and a medical degree from Columbia College of Physicians and Surgeons. He has published more than 300 articles on Lyme disease and related topics.
Given his eclectic background, it’s not surprising that Dr. Steere is a supporter of the undergraduate liberal arts tradition. “As a youngster, I was interested in music, thinking I might do that professionally,” he says. “I studied violin and even played in a string quartet with Itzhak Perlman, but I was good at science, so in college I majored in both pre-med and music. I believe strongly in liberal arts education; learning about great books, music, and art are the keys to opening up the world. I experienced that at Columbia—and my son [Allen C. Steere III ’95] had the same type of experience with the exceptional faculty at Ohio Wesleyan. Having a broad base of ideas makes choices possible.”
The Commencement ceremony, including Dr. Steere’s address, will be streamed live online at stream.owu.edu.
Conflicts Taint Science Hartford Courant, Hartford, CT USA By Editorial Staff, Hartford Courant
Much of the mainstream medical establishment agrees with the Infectious Disease Society of America's guidelines on Lyme disease, which say that most cases can be cured with a month's worth of antibiotics.
But the society undermined its own guidelines by filling the drafting committee with experts who had a financial stake in companies producing Lyme disease tests and treatments. The society also hurt its case by blocking the appointment of a panelist with an opposing point of view on Lyme disease.
State Attorney General Richard Blumenthal, who exposed the troubling arrangements, is a champion of those advocating for long-term antibiotic therapy to treat Lyme disease. He persuaded Infectious Disease Society officials to agree to a review of the guidelines by an independent panel of experts. Health insurance companies rely on the society's guidelines to determine coverage for Lyme disease treatment.
Medical ethics have been a major national concern since the Vioxx scandal of 2003. The widely prescribed arthritis drug was pulled off the market after U.S. Food and Drug Administration confirmed it doubled the risk of heart attacks and strokes. An advisory committee for the FDA had let the painkiller go on sale despite safety concerns. Nearly a third of committee members had received money from the drug manufacturer
Lyme disease, a debilitating condition transmitted by ticks infected with ...
La Grange, IL - Ruth Hornacek of La Grange was having trouble sorting laundry. She was experiencing a mental disconnect and was unable to separate clothes into piles for her husband and kids.
“I had no focus, no matter how hard I tried. I couldn’t pay bills on time, and I didn’t even have the concentration or stamina to take a shower, and I’d nap for three hours afterward from sheer exertion,” Hornacek said. “My life spiraled out of control, and doctors just kept telling me I was depressed.”
Convinced that there was some other underlying cause for the extreme difficulties she was facing, Hornacek took to the Internet, frantically searching for people with similar symptoms. The words Lyme Disease kept popping up. Sure enough, a Lyme-literate doctor in Michigan identified the insect-transmitted illness as the culprit.
May is Lyme Disease Awareness Month, and Hornacek’s new Chicagoland Lyme Support Group is determined to get the word out about the disease to educate the public on its prevalence, debunk myths and impress on people the need to lobby Congress for an increase in research funding. The network is even in the midst of filming a YouTube commercial.
“We’re trying to get the message out that this is something that’s hitting our corner of the world hard, and we’re 25 years behind with research,” Hornacek said. “Given what I’ve been through, I feel it’s my duty to let people know. It’s insane — it’s so much more common than people realize.”
The infectious disease is caused by bacterium from ticks, and sand flies and mosquitos also have been implicated. It can be transmitted in utero or sexually. If left untreated, the disease spreads to the nervous and immune systems and the heart and joints, and because it can lie dormant for years before manifesting itself in any physical manner, this is a scary reality for many people. Additionally, misdiagnosis is common because most doctors aren’t familiar enough with the symptoms, Hornacek said.
Photo: Andrew Westel
Ruth Hornacek of la Grange with about half of the medication she uses to treat Lyme Disease.
Support network
What: Chicagoland Lyme Support Group When: Meets from 7 to 9 p.m. last Thursday of every month; next gathering is Thursday, May 29 Where: 7904 W. North Ave., Elmwood Park Contact: Ruth Hornacek at (708) 691-7790
By the numbers • 19,931 Cases of Lyme Disease reported nationally in 2006 — more than double the 8,257 reported in 1993 • 110 Cases reported in Illinois in 2006, almost six times the 19 reported in 1993 • 59,770 cases were reported in epidemic-level states — Connecticut, Delaware, Maryland, Massachusetts, Minnesota, New Jersey, New York, Pennsylvania, Rhode Island and Wisconsin — from 2003 to 2005
Source: Centers for Disease Control and Prevention*
*Lyme Disease support group members say the illness is grossly under-reported and misdiagnosed, so statistics could be higher.
According to the International Lyme and Associated Diseases Society, Lyme Disease is the fastest-growing worldwide epidemic. In just a couple of months since the support group’s inception, it has grown its membership roster to 40 names from surrounding suburbs including Western Springs. Meetings are held in Elmwood Park, but people come from as far away as Peoria and Gary, Ind., to attend because there are few resources for ...
