Babesiosis, malaria’s cousin, can strike here

Written by Heather Devane, Press Intern 
Sunday, 05 September 2010 05:57

Nancy Boersma and Neeka: They enjoy walks together again.

Macklin Reid photoNeeka’s patience was tested this summer.

The nine-year-old Sato dog and her owner, Nancy Boersma of Ridgefield, had never missed their daily walks. But for five consecutive weeks, Neeka waited as her owner battled a serious yet mysterious illness that robbed her of almost an entire summer.

The culprit? A single, minuscule tick.“

I did have a rash, but when I saw it I said ‘it can’t be a tick because it didn’t irritate me,’” said Ms. Boersma. “I figured it must have been a different bite.”

So she did what any unsuspecting victim would: waited for the bite to heal itself.

After a week of feeling progressively worse, a doctor diagnosed Ms. Boersma with Lyme disease and prescribed antibiotics. However, this light at the end of the tunnel was a mere illusion.“

I was tired, fatigued, I had less and less energy and it was a struggle to get from one place to another,” said Ms. Boersma. “People told me ‘you have to wait until the antibiotic kicks in,’ and that was the answer if I mentioned to anybody that I was feeling worse.”

A second blood test yielded a surprising diagnosis: babesiosis.

Known as the first cousin to malaria, babesiosis is a tick-borne parasite that attacks red blood cells and induces flu-like symptoms. Extreme exhaustion is perhaps the most noticeable side effect; however, the illness can cause anemia, blood clots and in some cases, death.

“Malaria and babesia are both parasites and share some of the same symptoms,” said Dr. Daniel Cameron, head of LymeProject, a comprehensive care facility in Mount Kisco that specializes in Lyme and tick-related diseases. And while babesiosis is less well known than malaria, its effects are no less dire.

Ms. Boersma’s blood test results revealed the speed and seriousness with which babesiosis strikes. Her red blood cell count had plummeted from a healthy 37 to a 26, which a doctor called “a tick above needing a transfusion.”

If its effects are this severe, why are so few people aware of babesiosis? According to the Centers for Disease Control, the illness is usually contracted in the Northeast and northern Midwest during the warmer summer months. However, the parasite-carrying ticks are generally found in coastal towns or offshore islands. Many cases of babesiosis in this area may be tracked to ticks on Martha’s Vineyard or Nantucket.

That makes Ms. Boersma’s diagnosis a game-changer.“

I definitely got it from a tick around here,” she said.

There is evidence that babesiosis in Ridgefield is a growing condition, and Ms. Boersma was not the first to contract it from a local tick.

Edith Meffley, a longtime Ridgefielder and member of the Conservation Commission, spends much of her time outdoors and presumes it was in this environment that a tick latched on and passed the babesiosis parasite into her body.“

I was freezing to death and was wrapped up in a bunch of blankets,” Ms. Meffley said. “I was weak as could be and I just had no energy.”

Ms. Meffley’s physician identified the illness as babesiosis rather quickly, although it initially appeared to be Lyme disease. Its similarities to Lyme and ehrlichiosis, a tick-borne illness that causes headaches and muscle aches among other symptoms, make babesiosis difficult to diagnose.“

The symptoms overlap with a lot of Lyme disease symptoms,” said Dr. Cameron. “You don’t always see it unless you’re looking for it.”

The “deer tick,” Ixodes dammini, is known for Lyme disease, but is also a carrier of babesiosis.

Although the Connecticut Department of Public Health calls babesiosis “a newly recognized disease that is emerging in areas with high rates of Lyme disease,” Dr. Cameron has been investigating the illness for two decades.“

It might have been here all along but it takes a while to notice,” he explained. “Now there is more recognition and understanding about it.”

Still, in this area few places test for the condition — only Danbury Hospital and its satellite locations — are among them, making identification more difficult. For Ms. Boersma, who was too weak to drive, the effort to visit several doctors was taxing.“

I couldn’t do anything without my heart pounding,” Ms. Boersma said. “I actually called the ambulance because I didn’t think I would get through the night.”

At the height of her bout with babesiosis, Ms. Boersma did not think about the summer that was passing her by. On a warm August morning, she looked back at her calendar in amazement; the end of June and entirety of July were expanses of blank white boxes.“

Time goes on and you’re not aware because you’re just hanging on waiting for things to get better,” she said. “I did lose the summer.”

Could it have been prevented? According to Dr. Cameron, the answer is yes. He recommends staying away from areas in which ticks thrive and checking yourself — and your pets — after coming indoors.“

Any tick can contain more than one organism,” said Dr. Cameron. “If you get a rash, you better get to a doctor quickly.”

Speaking from experience, Edith Meffley agrees.“

You can avoid this by washing carefully because you don’t know what’s crawling on you,” she said. “Don’t go out in the bushes without carefully looking at yourself.”

Ms. Meffley and Ms. Boersma have spoken to one another about their babesiosis experiences and while neither plans to let ticks keep them out of nature, they will both be more attentive in the future.“

I’ve been here for almost 20 years and this is the first tick problem I’ve had,” said Ms. Boersma. “I think I’m ready for another 20 years. I’ll take that chance.”

This is good news for Neeka, Ms. Boersma’s loyal four-legged companion, whose patience paid off. Last week the duo completed a walk on their normal route.“

You really do learn to appreciate how good you feel when you don’t feel good,” Ms. Boersma said. It’s wonderful to be back to normal.”

Later that day, back in his city apartment, he felt an irritation on his back. Self-examination revealed a small dark tick embedded in his skin. Extracting as much as possible of the little blood-sucker, he wrapped the remnants of its body in tissue paper, intending to have the tick tested for Lyme disease; if it was carrying the bacteria that cause Lyme, he would immediately seek medical help. Years ago, he had been bitten by a tick, hadn’t notice the bite, and had developed Lyme disease. Diagnosed and treated late, the infection persisted, with a number of prostrating symptoms. Now, the memory of his ordeal made him keep the tick. But as the days passed and the tick’s body decomposed, the young man never got around to bringing it to a qualified lab.

Two weeks after the young man’s country outing, he developed a rash on his chest, and he began to feel symptoms similar to those experienced during his first Lyme infection. Alarmed, he checked into the hospital, consulting the same doctor who had previously diagnosed and treated him. Mainly on the basis of the rash and the resemblance of past and current symptoms, the doctor prescribed oral antibiotics. Then the doctor ordered a Lyme antibody test to confirm that the man had been newly infected. The test was inconclusive. After a few weeks of treatment, the man’s symptoms cleared up, and he has since remained symptom-free.

This case came to my attention in January, after I had submitted my column about the latest guidelines for Lyme disease published by the Infectious Diseases Society of America (IDSA) in 2006. (1) How would a physician adhering to the IDSA recommendations handle it?

A press release from the Lyme Disease Association (LDA), issued in October 2006 when IDSA published its revised guidelines, noted that the "new IDSA guidelines advise against clinical discretion in determining whether or not patients have Lyme disease. Instead, they advise that doctors either see a characteristic rash known to occur in about half the patients, or that patients register positive on the two tests recommended by the Centers for Disease Control & Prevention (CDC) tests known to miss up to half the patients." (2)

The LDA, representing more Lyme patients than any other organization in the US, particularly chronic patients, promotes guidelines published by the International Lyme and Associated Diseases Association (ILADS) in 2004. (3) These guidelines call for a clinical diagnosis, allowing physicians to weigh far more than the characteristic rash and antibody tests in determining whether to treat for Lyme disease. How would a physician belonging to the International Lyme and Associated Diseases Society (ILADS) handle the case described in the opening of this column?

An article cited in the October LDA press release (4) led me to phone Daniel Cameron, MD, acquaint him with this early case of Lyme disease (emphasis added), and ask for his opinion on the crucial differences in the IDSA and ILADS recommendations for diagnosis and care of the young man. Dr. Cameron, the sole author of the cited study, was also the lead author of the published ILADS treatment guidelines. He has been practicing in Mt. Kisco, New York (Westchester County) for 19 years. Much of his recent clinical research has focused on Lyme patients who fail antibiotic treatment. His findings to date suggest that the overwhelming reason is because they were diagnosed and treated late.

Here is Dr. Cameron’s comparison:

The IDSA guidelines would not have recommended treatment for the tick bite. They suggest that a single dose of doxycycline (up to a maximum of 200 mg.) could be prescribed within 72 hours of the tick’s removal, but under the following conditions:

(1) if the tick is readily identifiable as a deer tick in the adult or nymph stage and is estimated to have been attached for 36 hours or more, based on engorgement level or certainty of the time of exposure to the tick;

(2) if ecologic information indicates that the local tick infection rate with Lyme is at 20% or more;

(3) if doxycycline is not contraindicated.

In the case detailed above, even if the tick had been tested and confirmed as a carrier (note that such testing is not recommended by the IDSA guidelines), a physician sticking to the IDSA guidelines would wait for the characteristic rash to appear–and be larger than two inches–before prescribing treatment.

I quote from the IDSA recommendations concerning the rash: "Erythema migrans (EM, the characteristic rash) is the only manifestation of Lyme disease in the US that is sufficiently distinctive to allow clinical diagnosis in the absence of laboratory confirmation."

Following the ILADS guidelines, a physician would make a clinical diagnosis, use clinical judgment in determining if the bite was sufficient reason to treat, and consider other manifestations (especially in the absence of the rash or antibody tests) in diagnosing and prescribing.

Both physicians would use oral antibiotics. The IDSA-guided physician would treat for a maximum of 21 days (the IDSA minimum is ten days). No follow-up visit would be scheduled, unless the patient subsequently showed signs of Bell’s Palsy, heart block, meningitis, or arthritis. An ILADS-guided physician would give oral antibiotics for a minimum of a month, follow up with an office visit to evaluate the patient’s response to treatment, and continue treatment if signs of prolongation manifested.

Toward the end of my phone conversation with Dr. Cameron, he emphasized that the case we had discussed was early Lyme disease. The IDSA and ILADS guidelines most clearly diverge in cases of persistent, recurrent, or refractory Lyme. He directed me to his website, Lymeproject.com, advising me to look at an article he recently published that refutes assumptions of a report on long-term treatment for Lyme disease; IDSA cites this reference as a major support for its guidelines.

Dr. Cameron’s article, "Generalizability in Two Clinical Trials of Lyme Disease," (5) takes aim at the study by Klempner et al. published in The New England Journal of Medicine in 2001. (6) The Klempner study, conducted with funds from the National Institutes of Health (NIH), has become generalized in the medical literature–and decidedly so by insurance companies–as definitive proof that 12 weeks of antibiotics for sick Lyme patients makes no difference. Dr. Cameron’s critique makes it clear that the Klempner trial is not useful when dealing with a broader population.

The Lyme Disease Update, published by the LDA in 2004, (7) also critiques the Klempner study:

Klempner et al. found no statistically significant difference between   the group receiving antibiotics and the group receiving placebo. These   findings have not fostered a consensus of opinion among the clinical   research community. To cite two reservations: clinical experience   suggests that Lyme patients sick enough to require IV antibiotics may   not respond to one month of treatment, and adding oral antibiotics for   two more months may not benefit them either.

One of the aspects of the case referred to in this column that had puzzled me was the inconclusive antibody test, despite the tick bite and the onset of symptoms. I sought a quick explanation from Dr. Cameron. When antibiotics work, killing the Lyme bacteria, he said, it frequently prevents the generation of antibodies.

Dr. Cameron’s answer raised questions about IDSA’s insistence on relying on positive serology in diagnosing and treating Lyme disease. I phoned Nick Harris, PhD, the founder and CEO of IGeneX, Inc., in Palo Alto, California. IGeneX is a specialty reference laboratory for Lyme and other tick-borne diseases. Dr. Harris participated in the CDC meeting at Dearborn, Michigan, in 1995, where the CDC redefined its serologic criteria for Lyme disease. He spoke against the two-tiered testing proposal, the deletion of the 31kDa and 34kDa antigenic proteins (which struck him as incredible), and the limited utility of the IgM Western blot. (8) "All of these actions," he said, "caused a reduction in the testing sensitivity. (9) They also, by the way, had the potential effect of increasing the potential market size of a new Lyme vaccine under development at the time."

Apparently, ventured Dr. Harris, "IDSA feels the benefit of the two-tiered CDC system is the virtual 99% specificity. However, the tremendous downside is the lack of sensitivity when this testing system is used outside of the parameters for which it was designed. This two-tiered system was predicated on three events:

(1) A known tick bite in a highly endemic area;

(2) an EM rash;

(3) testing within two to four months of the tick bite.

"These are flawed parameters. Even in the best of cases, we can see from the studies of Engstrom et al. (10) that 20% of the EM positive patients with a known tick bite may test negative, and another 20% only tested positive on one of the studies’ six testing events."

In addition, Dr Harris pointed out, "by having an insensitive ELISA as the first step many patients are tested either too early (within days of a tick bite) or years after the event; in all these cases, the screening ELISA is negative and the patient is told they are Lyme negative."

"A test system cannot have everything," he said in summing up. "There is a trade off between sensitivity and specificity. That is why the FDA has set 95% specificity as the standard for approved tests. At IGeneX, for example, we’ve developed a Western Blot as a stand-alone-test that has a specificity of better than 95%, using only two antibody defined bands, but it gains 20% or more sensitivity (depending on when in the disease process the test is used)."

"Where do we go from here?" I asked Dr. Harris at the end of our phone interview.

"Currently, the Lyme community is in a crisis," he observed. "We need a simple, inexpensive testing approach to help determine who has been exposed to the Lyme bacteria. Then we need more studies in the clinical research literature that clarify our understanding of chronic Lyme disease. Finally, we need to leave MDs much more discretion than the IDSA guidelines do, so they can make clinical determinations about Lyme disease that result in adequate treatment for both early- and later-stage patients."

Notes

1. Cohen MA. CT attorney general investigates restrictive Lyme guidelines. Townsend Letter. April 2007.

2. Smith P. New IDSA guidelines forbid doctors from using clinical discretion in diagnosing Lyme disease. LDA. October 10, 2006.

3. ILADS. Evidence-based guidelines for the management of Lyme disease. Expert Rev. Anti-infect. The. 2004; 2(1): Suppl.

4. Cameron D. Consequences of treatment delay in Lyme disease. Journal of Evaluation in Clinical Practice. In press.

5. Cameron D. Generalizability in two clinical trials of Lyme disease. Epidemiologic Perspectives and Innovation. November 2006.

6. Klempner MS, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. New Engl. J. Med. 2001; 345 (2): 85-92.

7. Cohen MA. Lyme Disease Update. New Jersey: Lyme Disease Association; 2004.

8. Ibid. 31-32, 123-124.

9. Sensitivity refers to a test’s degree of ability to detect as many cases as possible. Specificity is the ability of a test to exclude false positives.

10. Engstrom, et al. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. J Clin Microbiol. 1995;33:419-427.

http://findarticles.com/p/articles/mi_m0ISW/is_286/ai_n19170415/pg_2?tag=artBody;col1

Because Lyme is so common, doctors often assume it is the sole problem in patients with tickborne infection, not recognizing newer diseases, says Durham’s doctor, Daniel J. Cameron, M.D., an internist and epidemiologist in Mount Kisco, New York, and past president of the International Lyme and Associated Diseases Society. It’s possible that undetected coinfections could help explain the medical mystery that is known as category 4, or "chronic," Lyme. Some sufferers contend their symptoms continue to affect them after the standard treatment of two to four weeks, but not all doctors believe Lyme persists. What if some of these patients continue to struggle because they have another tick-borne infection? "You have to examine whether you have prescribed appropriate antibiotics for each infection that might have been in that tick," Dr. Cameron says. "The problem is that doctors are reluctant to treat any more than the bare minimum, and they lose the opportunity to treat people in a timely manner."

Read the entire article at: http://www.msnbc.msn.com/id/41973641/ns/health-infectious_diseases/

By ELISABETH LEAMY, JOSH GAYNOR and LEE FERRAN 

Click for coverage with video

They’re tiny insects that can cause big problems. A rise in the number of ticks this year has infectious disease experts focused on the best way to treat the Lyme disease that the little buggers can spread.

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Some believe the disease can rewire the brain when left untreated.

Some 20,000 Americans are infected and treated every year, but countless others go undiagnosed. The illness has symptoms that include fever, fatigue and headaches, but if left untreated, Lyme disease can be more serious.

While there are physical symptoms of the disease that can include severe headaches, severe joint pain and even numbness in the hands or feet, many experts believe Lyme disease can rewire the human brain and affect personality. "I’m convinced that Lyme in a chronic form can affect psychiatric issues, neurological issues and you can have neurological problems," New York epidemiologist Dr. Daniel Cameron said.

The Center for Disease Control and Prevention notes that up to 5 percent of patients "may develop chronic neurological complaints months to years after infection."

Lyme disease patient Kelly Kulesz told "Good Morning America" she saw herself change overnight because of her infection.

"They put me on stage fright medications," Kulesz said. "Doctors thought it was obsessive compulsive disorder, but it’s just not."

When Terry Jo Sedlacek went to trial for allegedly gunning down the Rev. Fred Winters in March, the defense cited his Lyme disease infection and it’s contribution to what many call "lyme rage."

But not all experts believe Lyme disease causes such radical changes in personality.  "The example I like to cite is if I have Lyme disease and I get run over by a truck, the Lyme disease didn’t cause my broken leg," Halperin, said Dr. John Halperin, lead author on the new American Academy of Neurology Guideline on Lyme Disease Treatment.

ABC News medical contributor Dr. Marie Savard, who had lyme disease, said that the possibility of personality changes should at least be taken into consideration. "It does affect the central nervous system. You can have behavior changes, personality changes," she said. "We have to listen and pay attention."

Excerpts from Greenwich-Post article Click for full text:

Dr Cameron encourages new patients to request testing for the three most common Lyme disease co-infections: Babesiosis and Erlichiosis (HME or HCE), parasitic infections, and Bartonellosis, an infection caused by bacteria called Bartonella.

Symptoms and treatment of Lyme co-infections are as complex as Lyme itself.

Similar to the difficulty with Lyme diagnosis and treatment, Dr Cameron points out that the symptoms of these Lyme co-infections are also nonspecific, such as fever, chills, headache and malaise, and the diagnostic procedures often rely on a series of negative tests, since the parasites and bacteria that cause the infections are detectable in the bloodstream for only a short period of time.

"This is why it is so critical for patients to have a co-infection workup completed at the time of their initial diagnosis, when the likelihood of an accurate diagnosis is at its highest," Dr. Cameron said.