"... 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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Special screening of "Under Our Skin" Seattle, WA, July 24th
One night only.
Thursday July 24, 2008,
7:00 PM
There will be a social before and after
the film.
Landmark Threatres; The Harvard Exit
807 East Roy St., Seattle, WA 98102
(206) 781-5755
Tickets are $10 and are only available at the Harvard Exit Theatre box office.
Ok Feeling bummed again so thought I would change focus from what I can't do right now to what I can do.
I was able to get to feedstore via power chair and get Rosie's large bag of dog food.
They delivered the bag for me.
I was able to get to auto parts store and order the corner lights for the front of the car.
These have been broke for over a year now.
I was able to deposit the check from the car wash to pay for the broken lights.
I did car stuff via the car. Able to walk in and sit down on stool at auto parts store.
Both accomplishments are something that have been in the process for quite some time now.
I found a ficus in the trash can yesterday. I have been wanting to purchase one but it was not in the budget. So, pretty cool I found one in the big dumpster.
it needs a bigger pot and soil. Hope it stays alive until I get that job done and then after of course too.
When I first came down sick almost 7 yeaars ago, I had to let my large ficus go as I could no longer take care of my plants.
I think I will be able to take care of this one now. I hope.
I was able to get to water therapy this week.
I was able to get groceries this week.
I was able to put the dishes in the dishwasher and turn it on today.
I think I was able to sleep almost every night this week.
I was able to get the car in and get the hose replaced that broke this week.
I was able to type up questions for the telephone consult with lyme doc and fax them to his office this week.
(But, lyme doc's office was closed when I called to see why no one called at the scheduled time. Hoping I will hear from them Monday)
I also was able to get a letter off to the CALPERS Disability attorney and make copies of the denial letter that I received a year ago from CALPERS.
don't know why it took me so long to think about communicating with them via the keyboard but I finally did and got the job done. Sure hope they take my claim/case and also do not want money up front but will get paid when it is approved.
I think I have a pretty good case if they can use the fact that so many of us came down sick around the same time with the same bizarre symptoms and the others got disability.
If it is work-related, you and the others who have fallen ill together need to get together and figure out how you're going to ensure others in the future do not fall into your path. Is your employer willing to take any responsibility for your illness?
I think it is work related. We had several of us come down sick at work in Oct. 2001 or around there
WAnted to AD: I recall when I went to the mechanic via my power chair he had to fill out the forms for me as I could not write.
And when it came to signing my name I had a great deal of trouble getting the brain to talk to the hand so just put a line for my signature.
Same with ordering the parts for the car...goofed up there too. They have an inmate working at the store and my mind did not figure out it was an inmate until after I left.
I knew something was different ...had this what is going on here feeling...but did not put things together until after I had left.
I also had asked the mechanic in a letter as I was not able to talk when I was there...to let me know what it would cost to fix it before they fixed it. Which they did not. They went ahead and fixed it. So a week's worth of groceries went towards fixing the car.
I would have given the OK to fix it but was frustrated because I did not get my point across about letting me know first. IN CA, the mechanic needs to let you know first. I guess they do not have that law here.
it also took me several days to figure out what I was going to do with the car. All I could do was be patient until the brain clicked in...get some water in the radiator and see what happens. No hoses at the apartment so needed to find a place with a hose.
Went to gas station and they did not have water. But, guy knew were I could find some. Went to back of tire place and used their hose. Water ran out of radiator by the time I got back. Not good. Able to notice that the water was not coming out of radiator but behind the radiator. This was a good sign.
Then had to figure out how to get the car to the mechanic and function. Finally figured out to go there first in my power chair. And figured out to type things out first in a letter in case I was not able to communicate which I was not. First trip no one there. It was closed. Second trip had letter to drop off if they were closed but they were there. Called AAA towing and had car towed.
Picked car up via getting there by power chair. But, now need to go back and get power chair. Had made an appointment for senior van to take me the next day but had that inflamed brain thing so could not call and let mechanic know I would not be coming for 4 days now..since the 4th of JUly holiday and all would be closed. Hoping to get power chair Monday.
So much work now for something that was no big deal when I was working. I had a car that I just did routine maintenance with then and walking and talking was no problem then and signing my name and knowing what I was signing.
CAn't do grocery list so just get things as they pop in my head. also can't prepare meals so get things from the deli....mixed bean salad, fresh broccoli salad, etc.
I know others are having a much rougher time. So, need to focus on the good here and appreciate what I am able to do now.
Is your Lyme work related? How long have you been waiting on your disability?
I like that you're focusing on what you can do in attempt to redirect your thoughts away from what you cannot do ... your attitude is truly inspiring. Take care.
What an ordeal! At least you have the sleep study done ... let us know what you hear, when you get the results. I think insomnia is pretty common among chronic Lymies; I hope you get some real sleep soon....
* Mandy Hughes says she suffered from Lyme disease effects for more than 10 years
* Hughes featured in documentary that questions disease treatment guidelines
* There's a debate over whether the disease symptoms are mistaken for the disease
NEW YORK -- For more than 10 years, Mandy Hughes drifted in an out of what she calls the horrible, debilitating pain of Lyme disease.
"It literally feels like you got into a severe accident, like you were hit by a Mack truck and you were allowed no medical attention," she says.
After being bitten by a tick at 19, Hughes broke out in hives and suffered fever and chills so severe that she had to be hospitalized. She was diagnosed with Lyme disease and was sent home with two weeks' worth of the antibiotic tetracycline. She seemed to be cured.
Photo: CNN
Mandy Hughes says the pain she suffered for more than 10 years was due to Lyme disease
But over the years, the Lyme symptoms flared back -- crippling joint pain, muscle spasms, headaches and facial paralysis. She visited 15 doctors, yet they were unable to arrive at a diagnosis. Several thought she had multiple sclerosis. Others knew she was sick but didn't know why. Lyme had been ruled out.
The memory of one doctor's visit stays with her to this day. She went to see him with joint pain so severe, she said, her hands were curled into a palsy-like position. Yet the doctor seemed impatient with her.
"You're obviously an attractive woman, and you're just trying to get attention," she recalls him saying.
In 2005, Hughes went to see what some patients refer to as a "Lyme-literate" doctor -- one willing to diagnose chronic Lyme disease and prescribe a long-term regimen of intravenous as well as oral antibiotics.
Within three months, she began to feel better. After 15 months, she was ...
Research: Discovery Of Lyme Disease Bug Clone May Explain Disease Spread
LymeBlog News Lexington, KY USA By LymeBlog News Staff
Benjamin Luft, M.D., Professor of Medicine, Stony Brook University Medical Center, and colleagues discovered that a certain clone of Borrelia burgdorferi, the spirochete that causes Lyme disease, appears to be the most common strain causing Lyme disease in North America and Europe, and may account for the increase in cases for the past 20 years. Their investigation and findings of the ospC-A clone are reported in the July 2008 issue of Emerging Infectious Diseases, which is currently available on line at http://www.cdc.gov/ncidod/eid/upcoming.htm.
According to Dr. Luft, Lyme disease is the most common vector-borne disease in the United States with more than 20,000 cases reported annually. While B. burgdorferi is the primary pathogen in the United States, clones of the pathogen are known to cause major disease. The ospC-A clone was one of the first strains ever identified.
In “Wide Distribution of a High-Virulence Borrelia burgdorferi Clone in Europe and North America,” Dr. Luft and colleagues detail various methods of genetic testing of 68 B. burgdorferi isolates from Europe and North America. Based on the findings of their tests, the researchers concluded that the ospC-A clone dispersed rapidly and widely in the recent past and in both regions of the world.
“I believe this discovery will make an important contribution since it identifies an identical and high virulence clone of Borrelia in both Europe and North America,” said Dr. Luft. “This may explain the recent spread of Lyme disease in North America.”
The researchers report that the isolates of the clone were prevalent on both continents and uniform in DNA sequences, which suggests a recent trans-oceanic migration. More specifically, they ...
During a recent heat wave when the temperature in Ojai topped 100 degrees, Mike Rubalcava visited his friend Gavin Peters and was bothered by what he saw.
Peters, 32, suffers from muscular weakness and other symptoms from chronic Lyme disease — and the heat makes him weaker.
"When it's above 85, I'm just zapped," said Peters, a former professional skateboarder who now uses a wheelchair.
Three years ago, Peters moved from San Diego to his childhood home in Ojai so that his retired parents, Bill and Maureen Peters, could help take care of him. The only problem is their home was built in the 1950s without air conditioning.
Rubalcava could see that with Ojai's boiling weather just around the corner, Peters was facing months of suffering. His parents were considering getting a loan for air conditioning. Rubalcava decided to act. He began a grass-roots campaign to raise funds to have air conditioning installed in the Peters' home as soon as possible.
Photo: Gavin Peters
Gavin Peters at home.
Photo: Gavin Peters
"I've learned not to be stupid enough to predict the future. It's life; you've got to take it as it comes," says Gavin Peters, who suffers from symptoms of chronic Lyme disease.
"I said, This is crazy.' I know too many people who care and can help," said Rubalcava, a film editor from Ojai. He and stepdad Rich Handley have so far collected funds and pledges totaling $10,000 to $11,000, enough to remove asbestos from the home and have a new heating and cooling system installed. The asbestos work has been done, and the rest of the work will proceed as the funds that were pledged come in, Rubalcava said.
They are seeking donations from individuals, contractors and businesses to help renovate a bathroom to be wheelchair accessible for Peters, who is prone to falling, and, if possible, have solar panels installed to cut energy bills.
"We're not going to stop. There are a lot of people helping," said Rubalcava, who credits "viral e-mail" with spreading the word.
Peters and his friends also want to raise awareness about Lyme disease and the need to be checked by a doctor immediately if you are bitten by ...
New Documentary Explores Pros and Cons of Long-Term Medications
Bottom Line: If Something Is Not Right, Trust Your Health Radar as You Know Best
Just because medical science doesn't have the answer that doesn't mean you don't have a problem or it's all in your head.
The Fourth of July means we're in full summer swing, but that also means it's prime time for Lyme disease — the painful, debilitating infection spread by ticks. The Centers for Disease Control has reported more than 20,000 people get the disease every year, and the numbers are rising.
Photo: Getty Images
With warmer winters, deer ticks can reproduce more frequently and transmit the bacteria that cause Lyme disease. A lack of natural predators that normally hunt deer, such as wolves and mountain lions, also allows deer to flourish.
An emotionally charged new documentary titled "Under Our Skin" looks at sufferers of chronic Lyme disease, a painful condition at the center of a heated medical debate.
The symptoms are various. One Lyme disease sufferer showcased in the documentary likened the pain to "being all tied up like a mummy, so you can't move anything, and tape across your mouth so you can't say anything."
Ben is a baseball player whose hands shake uncontrollably. He describes how the disease changed his life: "I went from being a gifted athlete to, you know, times where it was hard to put a shirt on."
A young girl named Mandy describes her mental state as confused, but that "doctors said there was nothing wrong with me. I was just making it all up."
Most cases of Lyme disease can be treated easily with a short course of antibiotics, but for some, persistent symptoms are challenging conventional medical wisdom.
Chronic fatigue syndrome. Lupus. Fibromyalgia. Amyotrophic lateral sclerosis (ALS). Multiple sclerosis. These are some of the diagnoses that the subjects of "Under Our Skin" say doctors have incorrectly placed on them. And sometimes they receive no diagnosis at all.
One patient was told, "There's no medicine for you. You're an attractive girl. You don't feel like you're getting enough attention."
Patients like these say they are suffering from an ongoing Lyme infection, but various doctor groups hotly contest whether "chronic" Lyme disease actually exists. They are at odds over the scientific evidence.
Lyme disease, if treated early, can be cured with antibiotics. Usually a 10-to-28-day course of medicine will cure up to 95 percent of people within a few weeks. But it can progress to arthritis, meningitis, nerve and heart damage, and other chronic problems if not treated soon enough.
Dr. Gary Wormser, chief of infectious diseases at New York Medical College, told Newsday that ...
Research: Lyme Disease Bug Came From Europe Before Ice Age
European roots of Lyme disease bug revealed Welcome Trust
Researchers at the University of Bath have discovered that a bacterium that causes Lyme disease originated in Europe, rather than in North America as previously thought.
The bacterium responsible for Lyme disease, Borrelia burgdorferi, originated in America, or so researchers thought. Now, however, a team from the University of Bath has shown that this bug in fact came from Europe, originating from before the Ice Age.
By understanding the origins of the bacterium and how it has evolved so far researchers hope to be able to predict how it will continue to develop, and so find ways to prevent its spread.
Photo: CDC/ James Gathany; William Nicholson
The blacklegged tick Ixodes pacificus, a known vector for Borrelia burgdorferi, the pathogen responsible for Lyme disease
In the study, researchers from the University of Bath and colleagues from the UK and USA studied the evolutionary history of the bacteria by looking at the sequences of eight so-called 'housekeeping genes', which evolve very slowly. They analysed 64 different samples taken from infected humans and ticks in Europe and America.
In all, 33 different combinations of the housekeeping genes were found. The study's findings appear to show that Borrelia burgdorferi originated in Europe but that the species has been present in North America for a long time. The researchers suggest its re-emergence there in the 1970s occurred after the geographic territory of the tick that carries the bacteria expanded, for example through the restoration of woodland.
Lyme disease is a growing problem in Europe, Asia and - in particular - North America, where it is now the most common vector-borne disease. The disease was named after Old Lyme, Connecticut, the site of a number of cases in the 1970s. There is no vaccine for the infection, which can cause arthritis and problems with the nervous system and heart if left untreated.
