A Lyme Disease Warning From The CDC

(CBS)  To look at Alita Lyons today, and some old photographs of her, you can't tell that she is suffering from a debilitating disease. But she has had Lyme disease for two decades.

"It gave me this terrible insomnia," said Lyons.

Lyme disease is carried by tiny deer ticks. It often goes undetected for years and can be difficult to diagnose.

"I went to, I would say, over 20 doctors, complaining about these symptoms and nobody had a good diagnosis and nobody tested me for Lyme disease until a doctor finally did it in 2003," said Lyons.

And Lyme disease is on the rise, according to the Centers for Disease Control. From over 9,400 cases a year in 1991, the annual reported cases more than doubled to 23,000 by 2005, reports CBS News correspondent Randall Pinkston.

Which begs the question: Is more Lyme disease being spread or are people reporting more cases?

"Well, I think both are true — the public is definitely more knowledgeable about Lyme disease today than they were in 1991," said Dr. Brian Fallon of the Columbia University Medical Center.

Lyme disease is a bacteria named for the Connecticut town where it was first discovered three decades ago. But it's spread far from there by the ticks, which are carried by deer, mice and even birds.

Lyme disease is concentrated in 10 states, mostly in the Northeast and around the Great Lakes.

Typically, the first symptom is a red bull's eye rash. But sometimes there are no apparent symptoms. If it's not treated early, it can progress into a debilitating condition, as it did with Alita Lyons until she got heavy doses of antibiotics.

"We switched around antibiotics and found one that's really starting to make me feel better," Lyons said recently.

While public awareness is up, the Centers for Disease Control believes Lyme disease is still underreported by more than 200,000 cases a year. Experts want the federal government to provide at least $100 million for research.

---

Visit www.lymediseaseassociation.org for more information about Lyme disease.

[LymeAdvocate]

Kudos for helping to spread the word about the seriousness of Lyme disease. If it's caught early it is treatable, but many people suffer because they don't catch it early enough and it spreads throughout their system, including effects on the brain. Only about 20% of people present with a bull's-eye rash, so that is not a reliable indicator. Get a doctor or doctors who are educated about Lyme. It is a complex & multistage disease. Here's a website that interviews Lyme experts. http://www.lyme-disease-research-database.com/lyme_expert_interview_series.html

[webdudey]

The CDC reports about 10% of cases. So you can imagine how serious the problem is. Even though there is so much doom and gloom about it, there are inspiring true stories about it like this one here: http://www.beatlymedisease.com from an athlete with Chronic Lyme making a comeback. Great job CBS for covering the story on Lyme Disease.

[trigg12]

Thanks to Mr. Pinkston for airing this story; however, I wish the editing hadn't suggested that insomnia was the worst this debilitating disease has to offer. The next story done on this epidemic should emphasize the seriousness of what this nation is facing. The weak and cherry-picked CDC reporting is just the tip of the iceberg - there are so many layers to this story (as with the disease itself) that it MUST be told...wholly and truthfully. Lyme disease and it's co-infections are so under-reported and, unbelievably, still largely undiagnosed and, sadly, even less understood, that most American's are simply unaware of its danger.
The sufferers are many, championed by only a few. This is real news, worthy of real coverage with compassion and truth. It's not just about aches and pains - it's so much worse than that. This disease will eventually affect many more people than you could ever imagine. Someone with an available platform needs to help raise awareness and bring the attention to this life-altering disease that it deserves. Until then, it unfortunately will be left to the handful of dedicated medical practitioners and Lyme advocates and sufferers to fight this uphill battle against misinformation, misconception and medical misalignment.
Please do another story soon. It will be the most important reporting you will have ever done. Many personal accounts and researched facts will fall into your lap if you would just care enough to ask.

[elle108]

I am glad that Lyme disease got this coverage, although I must say that the Bullseye rash is frequently never observed or present...and also that my understnading is that the disease is all over the country, not just concentrated in ten states.

My daughter was bitten by a tick in 1996, did not get a Bullseye, had only borderline ELSIAs and we were told that her ensuing illnesses were everything from Fibromyalgia, to "chronic mononucleosis" to depression. FInally, she was given a Western Blot which came out positive and is being treated. Wish her pediatrician had treated her prophylactically back then, rahter than counting on the ELISA, which we know now porobably would not be positive yet at the time she had it...

[mayajourney]

Last year I developed Lymes Disease. At first I thought it was a spider bite because I never found the tick and actually felt the bite. I had gotten the Lymes Vaccine, but that didn't help at all. I got very sick and was on 2 months of antibiotics. After the 2nd month, I was still very sick. The doctors wanted to put me on long term antibiotics and 24 hour morphine to help my body pain. By the grace of God, I found a wonderful doctor (Dr. Pietrowski) who works with the neurotoxity issues related to Lymes. After the spirochete is killed, the "reoccurrence" problem is associated with the toxic waste build up in the body. The toxic buildup acts as a toxin and begins attacking neurotransmitters and immune functions. 25% of the population has a sensitivity to neurotoxins, such as Lymes Disease and Mold. Both carry similar symptoms. I found out through bloodwork that I was part of the 25% who gets very sick when exposed to these toxins. Long story short, my doctor and I are working on removing the toxins and rebuilding my system.
The good news is that if you find the right doctor to treat Lymes, you can fully recover. Unfortunately, not many doctors are being educated in this way. They continue to be educated by the drug companies, which only masks symptoms, but doesn't truly heal the body.

[ticktoons]

to "consciousness..."
the governement is US, we the people. Our tax dollars go for just such things to the CDC and NIH etc, to help find cures. Whether or not our government helped create this disease, they have a duty to us (as they are us) to help.
Not deny. I think the question is really, why such denial. In the face of the facts, the denial follows the Agent Orange fiasco, The Tuskeegee Experiment,and a long list of other government sponsored diseases..not to mention what we are doing to our men and women fighting the current war for us.

[ticktoons]

Thank you for this commentary on Lyme Disease. It is not often that the facts are given correctly. It is a serious disease, under-diagnoses and under-treated. I have been ill with it since the early 80's...and misdiagnosed with all sorts of things. I finally ended up in NY, on Long Island, got on a steady cocktail (that would change as need be..I had all the co-infections) but by three years I was (nearly) good as new.
It is not only a difficult disease to diagnose, but hard to find a doctor, then its hard to stay on treatment...which for those of us with chronic infectins turns into a job and takes a huge commitment, for some of us until a cure is found. The huge problem of course is the main-stream Ivy League educated md's whose education is limited to Klempner et al studies, which we know are faulty. Yet their jobs depend on denying the disease and they block our progress at each step.
The tests resulting from this batch of "research" are misleading at best, yet every year like clockwork, the JAMA and esp the NEJAMA come out with their latest statements, which resemble their past statements...short course of treatment. After that, doctors are actually coaxed as to what to say...a myriad of excuses to help move us along out of their offices.
Both my daughter and I have had hospital stays, denied treatment while there, and in my daughter's case was told by the entire staff told she did not have "Lyme's" but was "crazy."

[killdeer4]

I'm not into conspiracy theories, but has anyone noticed the proximity of the CDC's Plum Island Animal Disease Research Center to Lyme Connecticut, where it all started. Lyme is the closest point on the CT coast, about 13 miles as the tick-infected crow flies. Is this a coincidence or was there an unplanned release of an infected animal? If so the CDC isn't likely to fess up.

[saxbob111]

Those of us in the Lyme community know that the CDC and the IDSA are covering up the extent and the severity of the Lyme epidemic, the complexity of the spirochete, and the totally inadequate tests for Lyme. The FDA admitted to being on the payroll of drug company and managed care lobbiests. It appears that the CDC and their doctors are also under the influence of managed care lobby money. If Lyme were a bio-warfare agent released by some enemy of our country, our own government couldn't be helping them morethan they are.

[robin1237]

Thanks for featuring Lyme in your news program! This disease, along with co-infections, is not just in ten concentrated states, however -- it is spreading everywhere. We have infected tick bite reports coming in from backyards, parks, openspace, any kind of natural terrain -- all over the US and the world. You are not safe wherever you are, and need to start taking tick protection precautions. Also your pets will need tick protection too. www.lymenet.org has a lot of info on how to do so. I consider this kind of awareness top priority now for everyone's sake!