Saturday, June 28, 2008

Lyme Disease

I wanted to share with you what my friend, Scott Friedman, wrote about his incredible battle with Lyme disease. Lyme is such a dreadfully pervasive illness and so little is known or understood about it. The need to get Scott’s story and others like his, out there, is critical.

The Today Show recently did a piece on Lyme with Dr Nancy Snyderman, and while informative, it did not begin to scratch the surface of just how serious this illness really is. Scott has posted this information on the attached website, and it has struck a tremendous chord having already received 72,000 hits IN JUST ONE WEEK! That is the second highest in the site’s history! And he only posted it just last week I believe that exposure on a program that would be in a position to delve into the topic of Lyme in some depth would be a tremendous start to getting this awful situation out into the open. If more were known about it, perhaps a movement similar to those we see for prostate cancer and breast cancer might get underway, helping thousands, if not millions.

In Scott's words...

Although Lyme disease itself is becoming more and more prevalent, the media coverage seems to remain nearly silent and, if reported on at all, completely inaccurate. It was so refreshing to see a piece on the Today Show recently, longer than a five second sound-bite, that really showed how devastating Lyme disease can be. It was nice to hear a personal experience along with expert analysis from a well respected, yet usually ignored member of the Lyme community. I also enjoyed the preventative tips, however there really is so much more information surrounding Lyme disease that is just screaming to be exposed.

So many ill patients, including myself, never had the bulls-eye rash or swollen knees. Others were not lucky enough to obtain a positive blood test, due to extremely inaccurate testing and questionably strict and narrow guidelines of determining who is actually deemed to have Lyme. For us, the medical establishment had no answers, and we were left to suffer the unknown. The one case mentioned on ”Today” of a woman undiagnosed for 10 years is unfortunately incredibly common. After finally being properly diagnosed, most patients will continue a grueling battle against the disease itself, their insurance companies, and so many doctors who will continue to tell them, even after positive blood tests, that they are simply crazy and do not have the disease at all.

I spent 20+ years in the abyss of untreated Lyme disease. Numerous ticks bit me in my early childhood living in Wilton, CT. I had a dog that was diagnosed with Lyme and treated successfully. I slowly began suffering from strange symptoms like chronic neck pain, restless legs, insomnia, vision problems, and by the age of 12 full-blown depression. Not once was I tested for Lyme, nor did my doctors even suggest the idea. So it went on, years of painful, but not yet totally crippling symptoms. Heart arrhythmias, chronic headaches, back pain, gastrointestinal problems, profound fatigue and memory loss all came into play. I had been misdiagnosed with depression, ADD, Fibromyalgia, Ankylosing Spondylitis, Leukemia, Tendonitis, Dystonia, Radial Tunnel Syndrome, Candida, etc.

Finally, at the age of 26, my body gave in to the disease. I had overwhelming inflammation everywhere in my body. Eventually I could not use my arms and sometimes even my legs. I had such bad brain fog I couldn’t put the pieces together on my own. The pain was unbearable, making life itself seem not worth living. The medical establishment had utterly failed me. I had to give up my dream job in Santa Monica, CA, along with my beautiful apartment, car and friends. My girlfriend eventually left me, not able to continue watching my decline. The best doctors in New York and Los Angeles had no answers, as all my tests came back normal. Even the standard Western Blot Lyme Tests, taken four times, came back negative every time.

Only after I stumbled into a Lyme specialist’s office, referred to me by a fully recovered Lyme patient, did things start to make sense. My blood was sent to two tick-borne specialty labs this time. Two weeks later the results came back with Lyme-specific antibody markings through the roof. With these proper blood tests I was also clinically diagnosed with what the doctor called obvious signs of Lyme disease. I was properly diagnosed for the first time, and I slowly began to understand why it had taken so long. And yet, after all this, my journey had only just begun.

I was thrown into the middle of a medical war zone, known to the veterans as the Lyme Wars. On one side, holding all the cards and government grants are the university scientists and doctors, proclaiming with utter certainty that this disease is “hard to get, easy to cure.” These scientists and doctors are part of the Infectious Disease Society of America (IDSA), in charge of writing treatment guidelines for Lyme disease. Written more as a legal document they declare that two weeks of antibiotics will cure the disease, end of story. It just so happens that insurance companies, some who happen to provide funding to the four most prominent board members of the IDSA, agree completely with this short-term treatment approach and usually site the treatment guidelines when denying claims.

On the other side of the Lyme Wars are hundreds of thousands of patients, advocacy groups, and a dwindling number of brave doctors willing to treat patients differently. The only reason this side of the Lyme war exists is simply because the treatment guidelines written by the IDSA, and put into practice by so many doctors, have been failing since the immergence of the disease in the 1970s.

Risking their medical licenses, these Lyme doctors take another approach. They listen to their patients and treat them on a case by case basis, offering long term antibiotics if necessary, until they get well, which for some people could take years. For me, like so many others, treatment has been long and hard. 18 months of on and off IV and oral antibiotic treatment, and I am still sick. However, I have seen many of my symptoms disappear, slowly but surely. As the months go by the good days begin to outweigh the bad. A good day for me these days is being able to get out of bed and get myself to the pharmacy to pick up a prescription or some vitamins by myself. Most of my time however is spent in bed reading or watching TV.

Quite certainly, two weeks of treatment would have done absolutely nothing for me. The long-term antibiotic approach has proven to be the effective approach, especially for those of us who have been left undiagnosed for so long. Yet, this treatment is seen as quackery from those on the IDSA board, who say that anecdotal evidence is not science, while simply ignoring the large body of evidence proving them wrong. And because they are writing the treatment guidelines, they get the last word and have the loudest voice. So, for years, doctors successfully treating patients, bringing many back from near death, have been hauled in front of medical boards, having their licenses revoked followed by law suits from insurance companies. While the IDSA doctors simply treat patients for two weeks, or calls them crazy.

Lyme disease is not like a sinus infection or the common cold, therefore physicians and the media should not be treating it as such. Lyme is in fact a distant cousin to Syphilis, a spirochetal bacteria, which can become an all-encompassing debilitating nightmare. Ticks can carry other diseases as well, infecting humans not only with the Lyme spirochete, but also with diseases like Babesia, Bartonella and Ehrlichia. These tick-borne illnesses can leave patients crippled, sometimes for life, and has even managed to be the cause of death for the truly sick. Like Polio and HIV, this controversial illness will soon be recognized as one of the most serious of our time. Thankfully, Attorney General Blumenthal of CT has become involved. He has been investigating the IDSA board and the treatment guidelines for Lyme disease, finding serious conflicts of interest between the board members and insurance companies, as well as vaccine and test kit manufactures. He and the IDSA came to an historic agreement to let the treatment guidelines be reviewed by an independent panel, finally looking at all of the ignored scientific research surrounding the disease, including the area of untreated and chronic Lyme. Until an agreement is reached, doctors will continue to fight amongst themselves. While patients remain sick, waiting for answers, and hopefully, someday, a cure. This issue is like a bomb waiting to go off, demanding attention from the mainstream media. An in-depth look at the issues is critical to end the unnecessary suffering of so many.

Scott Friedman
Lyme, Bart, Babs and Ehrlichia for over 20 years
Misdiagnosed over 10 times
On treatment since 01/07

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