In early July of 2013, Jane Brody, a respected health journalist for the New York Times, wrote in her Personal Health column an article titled “When Lyme Disease Lasts and Lasts.” In it she described the case of Mary Rasenberger, a New York lawyer who has been suffering from chronic Lyme disease for a decade. Even though her test for Lyme came back negative, Ms. Rasenberger was eventually treated with antibiotics. According to Jane Brody:
…”after several months on antibiotics Ms. Rasenberger, like many similar patients, said she felt ‘completely healthy for the first time in years.’ Each time she tries to stop the medication, her debilitating symptoms return.”
Jane Brody goes on to say that this case is not unusual and that 10 to 15 percent of those who are treated for Lyme disease experience “persistent or recurrent symptoms of fatigue, musculoskeletal pain and cognitive complaints.”
Is There Really Lyme Disease After Treatment?
Many infectious disease experts and other physicians have a hard time with this concept. They have been trained that a relatively short course of antibiotics should clear up any infection once and for all. The concept of “post-treatment Lyme disease syndrome” (PTLSD) doesn’t fit well with their understanding of infectious disease. They may describe such patients as hypochondriacs who are grasping at straws to explain their fatigue and depression.
Some doctors are quick to shoot the messenger. One critic of Jane Brody and the editors of the New York Times dismissed the idea that there is such a thing as chronic Lyme disease. He described this notion as nonsense that belongs in the conspiracy theory category. He went on to chastise the Times for even advancing the idea that Lyme disease could last and last for some people, especially if the test for Lyme is negative.
How Many Germs Can One Tick Carry?
The critics are apparently ignoring evidence that there are many different infectious organisms transmitted by ticks. Any given tick may carry several of them. As a consequence, a patient may have more than one infection. Ov course, this complicates diagnosis and treatment even further. Here are some examples:
Anaplasmosis (Ixodes scapularis)
Babesiosis (Ixodes scapularis)
Bartonellosis (many different ticks, fleas & biting flies)
Borrelia burgdorferi [Lyme disease] (Ixodes scapularis)
Ehrlichiosis (Ambylomma americanum)
Powassan virus (Ixodes scapularis, Ixodes cookei or Ixodes marxi)
Rickettsiosis (Amblyomma maculatum)
Rocky Mountain Spotted Fever (Dermacentor variabilis, Dermacentor andersoni or Rhipicephalus sangunineus)
Southern Tick-Associated Rash Illness (STARI) (Ambylomma americanum)
Tickborne relapsing fever (TBRF)
Tularemia (Dermacentor variabilis, Dermacentor andersoni or Amblyomma americanum)
How Common Is Lyme Disease?
Until recently, doctors believed that Lyme disease was relatively uncommon. That was because the Centers for Disease Control and Prevention said that there were “only” about 20,000 to 30,000 cases annually in the U.S. In 2013, however, the CDC reversed course and admitted that Lyme disease is actually 10 times more prevalent and that at least 300,000 Americans come down with Lyme disease each year.
What the CDC doesn’t know is how many people contract bartonellosis, ehrlichiosis, STARI or tickborne relapsing fever, not to mention anaplasmosis or rickettsiosis. Sometimes the classic “bulls-eye” rash never appears, but the pathogen can still cause serious neurological consequences (Kantamaneni et al, Case Reports in Infectious Diseases, online April 23, 2017).
Readers Tell Their Stories:
Here are some stories from visitors to this website.
Joan L recounts:
“I was bitten by a deer tick and then came down with Lyme Disease in Utah – out in the middle of the Great Salt Lake on Antelope Island that has lots of mice and deer. I was playing with baby mice (I found their nest and had never seen baby mice before).
“The doctors told me I could not have it because there wasn’t any Lyme disease in Utah. They finally tested me for Lyme titer and it kept coming back higher and higher the longer they put off giving me some antibiotics.
“I made them give me copies of all the paperwork and all the tests–this was back in 1992! It was several months before I got help after feeling so terrible like I had the flu and was so tired.”
Unlike Joan, Nina lives in the east:
“I live on the Eastern Shore of Virginia. I had three kinds of tick disease and had to take lots of medicines. The only decent doctor who acted like he cared was put out of his office. So many people on the Eastern Shore of Virginia and Maryland have suffered while doctors wouldn’t treat then. Some got so sick their mate had to take them to Richmond. No small feat because it’s 4 or 5 hours from the Eastern Shore of Virginia. As you can tell I am miffed at the doctors who didn’t or wouldn’t treat people for Lyme disease.
“I had Lyme, babesiosis and ehrlichiosis.
“Thank you for listening and I hope this will improve to be a way of finding a better and easier cure then what we and our friends went through. We also lost two dogs to Lyme disease.”
PP points out that there are sometimes consequences for physicians who go against the establishment:
“Joe and Terry, I’m sure you remember the case a few years ago of a western North Carolina doctor who treated patients for Lyme even though the medical establishment said they couldn’t have Lyme. He treated them successfully, but his license was pulled by the state.”
NM also had a struggle getting an accurate diagnosis:
“The majority of physicians are NOT given correct information about Lyme Disease and its many co-infections. I was misdiagnosed for more than fifteen years before I got the correct diagnoses of Lyme, babesia and bartonella.
“An infectious disease doc diagnosed Chronic Fatigue Syndrome in 1993. Most docs are afraid to diagnose and treat Lyme because of the misinformed guidelines. It’s a very political disease.
“People are told Lyme is hard to get and easy to treat…WRONG!! I have learned this and so much more since my correct diagnoses in 2008.”
ASH is concerned, as we are, about Bartonella:
“I listened to your show about Bartonella shortly after hearing that a friend near Annapolis had been struggling with ever increasing rheumatic pain and fatigue. He had been making the diagnostic rounds which suggested that he might have Lyme disease or some auto immune condition. I called my friends this morning to alert them to Bartonella, only to hear that he’d had a saliva test which had just confirmed him positive for the bacterium.
“While a diagnosis isn’t a cure, I was pleased that mainstream medicine had picked up on it. I have forwarded my friends your podcast so that they can understand the scope of the problem and hear that there are doctors out there who are committed to finding the best treatment.
“You are an amazing resource. Thank you for all the information that you bring forward that helps all of us who hear you make more informed decisions about healthcare.”
Anyone who would like to access our radio show, “Ticks, Fleas & Mystery Disease“ about Bartonella and other Lyme co-infections, can listen to free bonus interviews with our guests, Edward Breitschwerdt, DVM, and Robert Mozayeni, MD. They reveal some amazing insights about these conditions. We think you will discover that many of these tick-borne diseases are harder to diagnose and more complicated than many physicians realize.
More recently, we discussed the complications that can ensue from a delay of diagnosing and treating Lyme disease with two physicians with personal experience. Show 1081: What Do You Need to Know About Lyme Disease? has a lot of information. Please share your own story below.