It might start with the tattletale “bull’s-eye” rash, or maybe just a red patch, or maybe no rash at all.
It might go away in a few weeks, a few months, or there may be ongoing symptoms for years, but one thing seems clear: Lyme disease is far more prevalent, long-lasting, debilitating and controversial than medical professionals previously believed.
In August of this year, the Centers for Disease Control and Prevention (CDC) released a report stating that the number of Lyme disease cases annually in the United States has been under-reported by as much as 90 percent, according to a detailed review dating back to the early 1990s.
“Each year, more than 30,000 cases of Lyme disease are reported to CDC, making it the most commonly reported tick-borne illness in the United States,” the report reads.
“The new estimate suggests that the total number of people diagnosed with Lyme disease is roughly 10 times higher than the yearly reported number.”
In other words, the real number of cases in the U.S. is more like 300,000 per year, not 30,000.
Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC’s Lyme disease program, added that, “this new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”
Another report from the CDC states that Post-Treatment Lyme Disease Syndrome (PTLDS) is also a problem in 10 to 20 percent of patients, but other sources suggest this number could be higher as well.
“The good news is that patients with PTLDS almost always get better with time,” the CDC report states. “The bad news is that it can take months to feel completely well.”
Furthermore, while the CDC website states that 96 percent of cases reported are from the same 13 states, mostly in the northeast and midwest, it also admits that cases have been reported in all 50 states.
One Tullahoma resident has told The News she was treated for Lyme disease in 2011, but still suffers from debilitating symptoms that her doctor believes are related to her initial Lyme infection.
Ann-Marie Morgan, 25, a 2006 graduate of Tullahoma High School who went on to earn a bachelor’s degree in film from the University of New Orleans, has endured an endless barrage of serious post-Lyme medical conditions for nearly three years, and her battle is far from over.
The typical sign of Lyme disease is the “bull’s-eye rash,” erythema migrans, which resembles a red target with a bull’s-eye in the middle. However, the CDC also states that at least one in four of all cases either do not get the bull’s-eye rash, or get no rash at all.
Morgan was between internships in New York City when she noticed a large red spot on her neck.
“It was April of 2011 when I noticed the rash,” Morgan said, “and I’d been back from New York for three months.
“There was no bull’s-eye or anything, it was just a large red patch on my neck.
“I went to the doctor and he told me it was probably a spider bite, so he prescribed some cream, but I kept getting sicker with flu-like symptoms, sleep problems, and other things.
“Three weeks after I got the skin cream, I woke up in the middle of the night with my heart pounding, and my pulse was 160 beats per minute. I knew at that point I was infected with something, but I didn’t know what.”
Morgan’s doctors couldn’t seem to explain why she was having so many problems, but continued to treat the symptoms as they appeared.
“It was one thing after another from that point on,” she said. “I had sharp pains going up my scalp, which they said was neuropathy, so they gave me Nuerontin for that.
“Then my wrist started swelling up so much I thought, ‘did I break it?’
“One doctor told me I was probably just depressed and offered to put me on Cymbalta, so I felt like he must have just thought I was crazy.
“Sometimes I did feel like I was losing my mind, but the symptoms were very real.”
Morgan said her blood pressure became so low, roughly 80/40 on average, that she was frequently on the verge of passing out.
“Every time I stand up, I still have to be careful,” she said. “To this day, I still have to take Florinef to raise my blood pressure just to keep it at normal levels.”
Within the first few months, Morgan went to a doctor in Nashville who tested her for Lyme disease, but it came out negative, according to accepted medical guidelines at the time.
“They said you have to test positive for five out of ten bands on the Western blot test before you’re considered infected with Lyme disease and before insurance will pay for it,” she said, “but I only had three bands positive.
‘Since then, I’ve been told that there’s not really a good test for Lyme disease and there are many different strains.”
Finally, after hearing about a doctor in Tunica, Miss., who specialized in infectious diseases, she was able to get her first antibiotic treatment for Lyme disease, despite the negative test results.
“Dr. (Timothy J.) Callaghan in Tunica probably saved my life by getting me started on the antibiotics, but that wasn’t until six months after the initial rash,” she said.
“I’d like to think that if I’d started on the antibiotics sooner, I might have avoided a lot of these problems.”
In July of 2012, Morgan finally went to see Dr. Richard Horowitz in New York City, a Lyme specialist who has written a book on the subject and recently appeared on Katie Couric’s talk show to discuss it.
While Horowitz and many others do not deny the existence of long-term, post-Lyme complications like Morgan’s, the medical community seems sharply divided over how to define and treat these conditions.
Many doctors particularly oppose use of the term “chronic Lyme disease,” and vehemently oppose ongoing treatment with antibiotics after the initial infection.
Prolonged treatment with antibiotics, they claim, can cause even worse problems for the patient.
Other doctors have lost, or nearly lost, their medical licenses for defying establishment practices and continuing to prescribe antibiotics for their Lyme patients, sometimes years after the initial infection.
Morgan said Horowitz continued her antibiotics long after her initial infection, but that they were mostly for co-infections such as babesia, that he said often go hand-in-hand with the Borrelia burgdorferi spirochete, the spiral-shaped bacteria that causes Lyme disease.
“I had to get these horrendous shots in my hip called bicillin, which took three or four minutes just to get them in,” she said.
“They made me bleed all the way through my pants, and I had to get them four times a week for a few weeks, but I definitely felt improvement from it afterward.”
Another antibiotic Morgan took was zithromycin, normally used for treating malaria, which she said was, “like a bright yellow paint that I had to swallow.”
Other conditions Morgan has been treated for over the last two years include tachycardia, pancreatitis and endometriosis, all of which, she understands, were caused by the Lyme and other infections “morphing” and moving into different parts of her system.
According to Alan B. MacDonald, M.D., a hospital pathologist in Connecticut and member of the International Lyme and Associated Diseases Society (ILADS), the Borrelia bacteria appears to be able to “corkscrew” its way through many different types of tissue, including heart, muscle and nerve, and may be directly associated with neuro-degenerative disorders including Multiple Sclerosis, Parkinson’s and even Alzheimer’s disease.
With over 25 years of neuropathology studies in which MacDonald states he had “no competing financial interests,” such as funding from private pharmaceutical or healthcare-related industries, MacDonald shows repeated findings of the Borrelia bacterium in the brain tissue of Alzheimer’s patients.
According to his profile in the Alzheimer’s Research Forum (www.alzforum.org), He and his fellow researchers point to “primary, secondary, and tertiary manifestations” of the Lyme spirochetes that may also be the causal factor behind many other well-known neurological disorders.
They also claim that the Borrelia bacteria can form a biofilm, or protective “coating” around their colonies, which may help shield them from antibodies and antibiotics.
For more on MacDonald’s research, visit http://alzheimerborreliosis.net.
Some of his work is also illustrated in an award-winning documentary film titled, “Under Our Skin,” released in 2009 and available for viewing and ordering online.
The film follows the lives of several patients who have suffered for years or even decades from long-term post-Lyme complications including chronic fatigue, joint pain, headaches, low blood pressure, heart palpitations, “brain fog,” muscle spasms, seizures and more.
Morgan said she relates to many patients in the film and has been treated for many of the same conditions, but is happy to say she is finally seeing a light at the end of the tunnel.
“I’m taking a lot of probiotics, vitamins and pancreatic enzymes to rebuild my immunities, as well as prescription drugs to treat my symptoms,” she said. “I even take vitamin B-12 injections to increase my energy, and it’s all recommended by my doctor.
“But at least I’m feeling well enough to start working at home a little, and possibly returning to a normal life at some point.”
Before her illness, Morgan was proofreading manuscripts scripts from screenwriters in New York and has managed to start the process up again from home.
She said she hopes to return to New York as soon as possible to pick up where she left off.
“I don’t blame any of my doctors,” she said, “but I do wish I could have gotten the antibiotic treatments earlier.
“My advice to others would be, don’t underestimate this.
“If you get bitten by a tick or get a rash, don’t put it off, see a doctor right away and get antibiotics if you can.”