CDC says fewer suffer after Lyme disease. Doesn’t say if they were treated early.
From the Huffington Post, Sept. 8, 2016:
By Mary Beth Pfeiffer
For at least five years, the U.S. Centers for Disease Control and Prevention has officially stated that 10 to 20 percent of patients treated for Lyme disease — some 30,000 to 60,000 of 300,000 infected yearly — “will have lingering symptoms of fatigue, pain, or joint and muscle aches,” even after supposedly curative antibiotic treatment.
But quietly, without peer review or formal announcement, the agency has decided that the actual percentage is much smaller — half or a quarter as much. The decision was made, officials told me, based on a study that showed less than 5 percent of Lyme patients exhibit ongoing symptoms after treatment.
Consequently, the CDC’s web site now states that “a small percentage” of patients will have lingering symptoms of what is called Post-treatment Lyme Disease Syndrome or PTLDS. Other studies have found higher shares of patients suffering after treatment, particularly when diagnosis is delayed. The study cited by the CDC was of patients treated early and who exhibited symptoms on average 15 years later. READ MORE.
Mary Beth Pfeiffer is a long-time investigative journalist who is writing a book on the global spread of Lyme and other tick-borne diseases. Follow her on Twitter: @marybethpf
Only 5%, yeah right. And pigs fly too!
It feels to me as if the CDC actually don’t know very much about Lyme. When my doctor called them where I live to report me having it, he told her,’ don’t send her to me, I don’t know what to do with her’. My doctors exact words, and the look on her face was surprise. I think Lyme runs rampant in the southern states and doctors treat it the way they were taught in college (if they even figure it out to begin with) 2 rounds of antibiotic and WaLa, you’re cured….Not. It took me years to find a doctor, and then she got sick from it herself (again) and had to leave. Now I am on my 3rd try to get better and was blessed to find a doctor 2 hours from my home. The difference between a Lyme Dr. and a regular physician is vast. So my advice is ‘ drop your regular family doc and seek a ‘real’ Lyme specialist because there is hope for all the many puzzling things that have been wrong with you. A real Lyme doctor knows the right questions. After years of trying to tell neurologists, rheumatologists, and my own gp something was wrong with my head, I could no longer spell words, easy words, when I finally found a Lyme specialist I literally broke out crying, her first question to me was…So, how’s your spelling? I cried happy tears, I knew this doctor would understand. She was a Lyme patient herself, who had to quit nursing school to study Lyme, because even she could not find anyone to treat her. The CDC has not a clue if you ask me.
Sounds like the CDC has been selling people like a timeshare salesman would,for all these years.
Post-treatment Lyme Disease Syndrome or PTLDS; the very fact that they have coined a term for what they do not understand makes my blood boil! Consider this, what they are calling a syndrome is actually a persistent infection. How ignorant is the medical profession that does not treat a patient? To only treat symptoms- or in some cases to simply deny the symptoms altogether- and ignore the underlying bacterial infection is absurd. My LLMD can clearly show the presence of spirochetes in my blood using the tool of darkfield microscopy, yet he is not allowed to use that simple test for diagnosis.
In my case, there was no treatment- despite going to a clinic with a rash after being bitten by a tick. So how can the CDC class me as post-treatment?
Who is your doctor and in what state?
Because it’s notlike we don’t try to get help for our Lyme’s were blocked
New to this site. Now seeing an ILADS for daily treatment for Lyme, including bartonella and mycoplasma with IV Rocephin and Erythromycin after 3 trials of Doxy this past year. First LD positive was 15 mos. ago but first false positive 26 years ago when symptoms first appeared.
From 1990-1992 had constant fever, swollen cervical glands, sore throat, violent headaches with vomiting, and pronounced myalgia and fatigue. Given diagnosis of fibromyalgia then and treated with gabapentin and eventually Lyrica for severe peripheral neuropathy and Soma for muscle spasms. Cut back from full-time to part-time nursing (BSN UPenn) and accepted early retirement shortly after because of severity of mysterious symptoms. Now trying to educate about prevention and importance of early detection as well as self-education through Internet and personal contact but would to get more politically involved or assist with research. Some neuro sx appear to have improved with abx with no migraines requiring sumatriptan SC for 10 days.
Glad you are finding some relief. In terms of getting more involved, a really important thing you can do is to enroll in MyLymeData. It’s a patient-powered research project that collects the real experiences of real patients. https://www.lymedisease.org/mylymedata/