>>I may opt to go on disability if the herx is real bad so i can focus on chelating and rife and am trying to create a case to be eligible...thats all.>>>
I've been trying to stay off of the computer so I can get some much needed stuff done--but I have been reading you and Newport's posts.
Getting on Lyme Disability, would be a chore in itself Wen.
>>>BETHEL -- It took Darren Nehez 13 years of total dedication to build his body up.
"I was at 308 pounds
-- all muscle,'' he said.
It took Lyme disease and another tick-borne illness, bartonella, less than four years to undo all that.
Nehez, 36, has lost about 90 pounds. He suffers from headaches, fatigue, insomnia and gastrointestinal distress.
He speaks quietly and moves slowly.
Bright light hurts his eyes. Loud noises bother him. His joints hurt him constantly.
"When I move my left shoulder, I feel it in my right shoulder,'' he said.
Nehez has what many doctors would consider to be chronic, persistent Lyme disease.
But because of the controversies about the disease -- how many people have it, how it should be diagnosed, and whether chronic Lyme disease even exists -- dealing with it also means dealing with a medical bureaucracy that often doesn't know what to do with his condition.
Nehez has gone to some doctors who, despite the blood tests showing he has Lyme bacteria infection, deny he has the disease.
His latest foray into this territory is his attempt to get Social Security disability. He was denied in February.
The former surveyor plans an appeal, but the road won't be easy because the Social Security Administration does not list Lyme disease as an illness that can be responsible for disability, said Kurt Czarnowski, regional communications director for the New England Office of the
Social Security Administration.
"Lyme disease is evaluated as an immune system disorder,'' Czarnowski said.
But Nehez cannot work. He had to give up the home he was renting in New Milford. He lives with his parents and they've had to shoulder the burden of paying for his health care, which has cost them thousands of dollars.
He's seen about 13 doctors, none of whom have been able to cure him.
But unlike other Lyme sufferers -- who have to wait years before they learn what ails them -- Nehez knows. In 2006, a few months after he became ill, his blood tested positive for Lyme infection. It still does.
But he has never been able to collect any disability pay for his illness. Besides getting turned down for Social Security disability benefits, he's been refused workman's compensation.
"We have determined that your condition is not severe enough to keep you from working,'' Manuel Vaz, regional commissioner for the Social Security Administration, said in a letter to Nehez, claiming the medical evidence only shows Nehez suffering from "joint pains, headaches and some mild depressive symptoms.''
"If your symptoms get worse, write, call or visit any Social Security office about filing another application,'' Vaz wrote.
Because the Social Security Administration does not recognize Lyme disease as an illness, it also does not keep track of how many people have filed for Social Security disability payments, or how many have been denied, Czarnowski said.
Nehez plans to appeal the ruling.
"If I get any worse, they'll be putting flowers on my grave,'' he said.
His situation points out one of the basic problems many Lyme disease patients suffer from -- they are ill, infected with a tick-borne bacteria, but cannot get those in charge of helping them financially to acknowledge a problem exists.
And according to Pat Smith, president of the Lyme Disease Association, it's getting worse.
"Over the past six months, from what I've been hearing, it's becoming a lot more difficult to get disability,'' she said. "Or else people are saying it's a mental problem, rather than a physical problem -- it's all in people's heads,'' Smith said.
At the same time, she said, the numbers of people getting Lyme disease are rising.
Nationally, the Centers for Disease Control and Prevention reported that in 2007 there were 27,444 confirmed cases of Lyme disease in the U.S. -- the highest number yet recorded. Connecticut had 3,058 of those cases.
But by most standards, Smith said, the number of unconfirmed cases of Lyme disease is probably 10 times higher.
"The numbers are rising nationwide,'' she said. "And it's not just a Northeast states thing.''
At the same time, the debate over whether there is even such a thing as chronic, long-term infection from Lyme disease continues.
One prominent group of doctors -- the Infectious Diseases Society of America -- insists the illness can be cured with short courses of oral Antibiotics
Its position is that long-term infection of Lyme disease does not exist and that it is medically useless, costly and potentially harmful to treat patients with long courses of Antibiotics
, including intravenous Antibiotics
A smaller group of doctors -- the International Lyme and Associated Diseases Society -- takes the opposite view.
They believe some patients suffer from chronic Lyme, and that long-term courses of antibiotics and other drugs are needed to kill the infection.
Dr. Daniel Cameron of Mount Kisco, N.Y. -- the president of ILADS -- said he's had some success in getting Lyme disease patients qualified for disability insurance. But to do that, he said, doctors need to focus on all the symptoms, and not on the name Lyme disease.
"Sometimes it can be difficult because the reviewer of the application may have certain feelings about Lyme disease,'' he said. In Nehez's case, the reviewer was a psychologist, not a medical doctor.
Nehez knows the arguments. He's had both short-term and long-term intravenous courses of antibiotics. He is convinced he has a persistent infection with Lyme bacteria.
Nothing has helped him permanently and by now, he said, antibiotics have damaged his digestive system.
"Those things," he said, "just rip up my insides."
There was a news story on here today, about a woman with Lyme's that committed suicide :(