The danger posed by Lyme disease is well known: rashes, swollen joints and inflamed nerves.
Less familiar to most of us are the supposed symptoms of chronic Lyme disease, a diagnosis some doctors are making when patients have persistent maladies such as back pain and fatigue.
The problem, as the Chicago Tribune reports, is that there is no “convincing biologic evidence” that chronic Lyme disease even exists, according to the Infectious Diseases Society of America, the nation’s largest professional organization for specialists in the field. One expert panel after another has concluded that the diagnosis is suspect, yet the belief in chronic Lyme disease endures, propelled in some cases by pseudo-scientific conspiracy theory claims, passed along primarily on the Internet.
And while normal Lyme disease is typically treated with a relatively simple round of oral antibiotics, the treatment for chronic Lyme disease is far more elaborate: months or even years of intravenous antibiotic programs.
Clinical trials have shown that the long-term intravenous treatments are medically ineffective, and even put patients at significant risk of dangerous complications. One study found that a quarter of the long-term antibiotic treatment recipients developed severe health problems, from blood clots to gallbladder loss. There have also been several cases of patients dying while in the midst of intravenous antibiotic treatment.
Furthermore, because the greater presence of antibiotics among the general population increases bacterial resistance, the unnecessary use of antibiotics carries a broader societal risk.
The continued diagnoses of chronic Lyme disease have provoked disciplinary action against doctors by state medical boards. According to the Tribune, “Five of the 20 members of the medical advisory board of the Turn the Corner Foundation [a chronic Lyme advocacy group] .. .were disciplined by state medical boards or agreed to stricter oversight by state medical authorities in order to avoid misconduct charges.”
Still, fueled by skepticism about government agencies, drug companies, the media and conventional physicians, advocates for the cause push ahead. With chronic Lyme disease fueling significant political donations, lawmakers in recent years in 13 states have introduced Lyme-friendly bills, many of which prevent medical boards from disciplining doctors for treating Lyme with antibiotics long-term. In four of the states, the Lyme-friendly laws have passed.
The treatment guidelines are only based on four clinical trials by the NIH, yet there are over 25 studies that prove the guidelines are insufficient and the chronic Lyme does exist. As with other diseases, the treatment should be based on the individual’s needs based on both clinical symptoms diagnosis and blood work. I know from experience that the treatment guidelines are insufficient. The standard 10-day and 28 IV treatments did not work for me. Within six weeks from initial treatment, I was completely disabled and bedridden. It affected both my central nervous and peripheral nervous systems, which Dr. Steere has shown that CNS symptoms are very common. I had the tick, bulls-eye rash (which most don’t see) and all the symptoms. If I had received the treatment according to my needs, I would have never lost my job and two years of my life. It took extended treatment of unconventional and conventional medicine to recover.
I wrote an article on chronic Lyme disease using studies from around the world, read it and decide for yourself. Look at the science, rather than the hype:
http://www.lymebook.com/chronic-lyme-disease-science
Patrick, you call yourself a Researcher-Reporter? What research have you done on Lyme Disease? Do you think that just because it is written up in the Chicago Tribune that Chronic Lyme Disease does not exist — it is true? Wake up! Do your own research.
Real people are disabled by infections that come from tick bites… every day. It is an epidemic, no a pandemic that is being ignored by the CDC, the NIH, the IDSA and governments all over the world. Why? Pride, greed, arrogance, I don’t know.
I do know that people are suffering because of the propaganda being spread by so called reporters that are spreading the lies that kill people with real infections. Watch the documentary Under Our Skin — http://www.underourskin.com It explains what is really going on. Which is not what the IDSA claims is going on.
Famous people with lyme disease… their real stories. Including the horrors they have had to face due to the lies that are spread about Lyme disease.
http://www.bada-uk.org/wordpress/?p=284
What investigation does your headline refer to? Surely it is not a poorly researched badly flawed newspaper article, one of whose authors journalism credentials seem to extend only to food columns without a shred of medical or science background. Published in a newspaper that is badly run, by an owner that cares nothing about journalism.
Talk about lousy inaccurate stuff on the internet. That about sums up your post on this subject. Hope your other information has a better grounding. If not, pack it in.
I would suggest that your investigative approach be less biased and much more objective. I would also suggest that when you encounter an article such as that published in the Chicago Tribune that you choose to treat it as a challenge to investigate its accuracy, rather than simply applying “copy and paste” mode.
Perhaps, too, it would be beneficial if you would go hiking in the White Mountains of New Hampshire — say, during the first week or two of October. When you return home you will develop an odd “flu” that you blame on one of your pediatric patients. You will then spend the next six years misdiagnosed — as you continue to spiral down physically, but have an incredible number of diagnoses placed in your chart.
During this process, you will see many specialists. Most will pass you off as a psychiatric patient (Convergence Disorder no longer exists as a diagnosis in the DSM-IV fyi), many will tell you that, because of your objective SIGNS, not just your symptoms, that you have a “chronic progressive genetic illness” as they try to connect anything and everything to your grandparents’ and great-grandparents’ medical histories, and some will — as in my case — ignore the call that they receive from your VETERINARIAN telling them to test you for these tick-borne diseases.
As you begin to have severe neurological symptoms — so severe that you end up wheel-chair bound, then develop epilepsy and eventually have a stroke at age 46, think about the article you just wrote.
When it dawns on you that you may possibly have Lyme disease — and the co-infections that accompany it as well as the autoimmune diseases that develop because of it (Rheumatoid Arthritis, Hashimoto’s Thyroiditis, Neurogenic Celiac, Raynaud’s, Dysautonomia – to name only a very few), I would like you to think long and hard about this:
Would you choose to live a life so incredibly debilitated or would you choose to be in the care of a physician who has an extensive background in both neurology and immunology, who has extensively researched Lyme and other tick-borne diseases and who offers you a genuine opportunity of not only continuing to live, but living a much better life?
I hope that you never have to choose. Believe me. If you treat your health in the same manner that you treat your profession, you do not have the wherewithal to investigate the options available to you in order to save your life.