info@projectlyme.org

Chris Philbrook

Where CDC Guidelines Fail, Leading Lyme Disease Doctor Succeeds

Dr. Steven E. Phillips is a Yale-trained, world-renowned Lyme disease doctor who has treated over 20,000 patients in the last two decades. He is well-published in the peer-reviewed medical literature, a former president of The International Lyme and Associated Diseases Society, and acclaimed for his work in tick-borne diseases. He has a special interest in chronic diseases which have been linked to Lyme, such as MS, fibromyalgia, and inflammatory arthritis. He has given expert testimony regarding Lyme Disease for the states of NY, CT, RI, and VT to assist in their public health efforts to deal with the Lyme epidemic. He is in private practice in Wilton, CT.

On a personal note, he is the doctor who saved my life after I was misdiagnosed for five months by eleven “top” NYC doctors. I am forever indebted, and proud to share his vast knowledge and insights with you.

Here is Part 1 of my interview with him:

How did you get interested in treating Lyme Disease?
I grew up in Rockland County, which is endemic for Lyme, and I personally knew eight people who had bad cases of Lyme. When I was in med school, I read an article in the local paper saying that Rockland County had eight reported cases of Lyme, and I realized how under-reported it had to be if I knew that many myself.

I did an elective during my residency at Yale and learned about the controversial aspects of Lyme- it was a mess- and at that time, there was this article that came out in JAMA saying Lyme was over-diagnosed. I was very disappointed in the logic in the article, and frustrated by the scientific arrogance that was pervasive in the medical literature about Lyme. That got me more interested in Lyme and I started doing more electives in it.

You famously saved your dad from having a heart transplant after twenty years of idiopathic heart issues, which turned out to be Lyme. Tell us about that.
My dad, a physicist, is now eighty-three years old. It seems that my whole career has been an effort to help save him.

He had what they thought was viral meningitis in the mid-seventies. Shortly after that, he started getting heart palpitations which his doctors said were benign. After many years of that, he developed atrial fibrillation, a kind of arrhythmia, and it kept getting worse, in spite of seeing the best NYC cardiologists and being on a host of meds. By the early nineties, he had chronic AFib and developed heart failure with an ejection fraction of twenty percent. His prognosis, statistically, was that he’d live about six months.

His cardiologist recommended a heart transplant.

He was then diagnosed with dilated cardiomyopathy, which I learned could be caused by Lyme, so I tested him. His test was somewhat inconclusive, but because of the seriousness of his condition, I asked him what he wanted to try first; a heart transplant or some Doxycycline.

I gave him the Doxy and he had a Herxheimer reaction which increased my clinical suspicion that it was most likely Lyme. That motivated me to offer more aggressive and longer antibiotic therapy.

While his heart function normalized after a year of antibiotics, I kept him on for three years because we were all terrified that it would come back if we stopped too soon. And, now, twenty years later, his EF is still completely normal at sixty percent.

After all this, were his other doctors finally in agreement that he had Lyme?
Not at all. I told them what I thought was going on and they said they would not treat him because it wasn’t standard and that he didn’t have a history of a Lyme rash or a positive Lyme antibody test. I brought them studies showing that they’ve recovered Lyme from the hearts of patients with his condition. I also showed data that tons of Lyme patients never had a rash and had negative blood tests. No luck.

So, I ended up treating him myself.

Ironically, there was a study published in 2015 where they found Lyme in twenty percent of patients in heart failure- none had the bullseye rash and sixty-four percent had a negative blood test- and all of them got better with antibiotics.

So, I ask you, who would have been able to save these patients with life-threatening heart failure if IDSA Guidelines were followed?

Have you subsequently treated others with this condition?
I’ve had the pleasure of treating about fifteen patients with dilated cardiomyopathy— some were quite young in their twenties— and every single one improved. I treat them very slowly to prevent dangerous herxheimers.

How many Lyme patients have you personally treated that have gotten better?
The vast majority of patients who get to me do get better. I haven’t kept statistics in many years, but when I did, it was approximately 97%. But better is a relative term. Only a minority say they’re 100% back to normal. I’ve been defining ‘better’ for my purposes as the patient reporting more than 90% back to normal.

And you treat solely with antibiotics?
Yes, but I am open-minded to people doing herbals and other alternative medicine in conjunction.

Why are doctors so quick to diagnose autoimmune disease?
It’s always been striking to me how most chronic diseases are of unknown etiology, yet how many have been linked in medical literature to Lyme and Bartonella.

When people get a diagnosis of Fibromyalgia, MS, Lupus, rheumatoid arthritis, psoriatic arthritis, or other rheumatologic/inflammatory diagnosis du jour, they are not getting an actual diagnosis. They’re getting a description of conditions that brings them no closer to an answer. And I don’t think that the majority of doctors are evaluating these patients for the possibility of arthropod-borne infections like Lyme and Bartonella as closely as they should be.

To have a negative Lyme ELISA test- which is known to be horribly unreliable-and then sentence a patient to a lifetime of immunosuppressive drugs, in my opinion, is abjectly wrong.

Can you tell us about some of your most complex cases?
I have treated extremely difficult cases. There are those with chronic fatigue-like symptoms where they’re in bed twenty hours a day, and some will develop a POTS-type presentation where their heart rate climbs to 140 or 160 when they stand. Although stubborn to treat, I have had countless patients who have had these symptoms and gotten better.

I’ve seen patterns related to different co-infections, like Bartonella and Lyme, which I believe are the two most problematic.

Another common presentation is MS. When we say that Lyme can mimic MS, it can do so literally 100%. So, we have to ask what percentage of MS is caused by Lyme.

If you look at the epidemiology of Lyme, it overlaps with MS identically. If you look at the diagnostics—whether it’s white spots on the brain or spinal cord or optic neuritis, oligoclonal bands in the spinal fluid, or evoked potentials—every single clinical descriptor has been reported with Lyme. There is no clinical, laboratory, or radiologic feature which accurately differentiates the two.

Keep in mind that the majority of symptoms of Lyme are caused by the immune system going after the organism. If you induce immune suppression, you can reduce symptoms in most patients, but at the huge cost of allowing the bacteria go deeper and become more entrenched. So, it’s no surprise that steroids given before antibiotics increase the risk of antibiotic treatment failure.

Back in the early MS literature, they found spirochetes in the brains of patients who were autopsied. They called it by a Latin name that meant myelin destroyer.

They knew it was a spirochete that wasn’t syphilis but they didn’t know what it was, and they did a number of animal studies taking the spinal cord fluid and tissue of those with MS and putting it into baby animals, and the animals got progressive neurologic illness.

But when steroids were discovered, they realized they could suppress symptoms quickly, and this whole concept of autoimmune disease sprang up. So, before steroids, MS was known as an infectious disease.

This is also where a 180 degree turn was made in the field of rheumatology. In the older rheumatology literature, there was an ever-present investigation into the causes of inflammatory conditions. Now it seems that everyone focuses on newer and more lucrative immunosuppressive drugs without looking for the cause of the inflammation.

I think that Bartonella is much more of a problem than Lyme in inflammatory joint disease patients and that this needs to be clarified. Although a bit harder to treat than Lyme, treating Bartonella effectively, in my experience, can benefit patients with a range of inflammatory arthritis syndromes.

But I think overall, the most challenging patients have been those with neurodegenerative illness. There has been data linking Lyme to a range of dementing illness, including Alzheimer’s.

We desperately need research funding to look into novel strategies, such as autophagy induction, to clear out accumulated abnormal proteins in the central nervous system that cause neurodegenerative illness. I gave an in-depth talk about this, which you can find here.

How many patients come to you with an MS diagnosis who actually get better with antibiotics?
A lot. I have to differentiate the relapse and remitting folks from the primary progressives. I don’t know that primary progressives have Lyme—they don’t respond the same way—but my relapse and remitting patients respond quite well and the majority have evidence of Lyme if you thoroughly evaluate.

One of my most challenging patients was a man who developed neurologic symptoms five years after an EM rash. He became rapidly disabled with forty large brain and spinal cord lesions.

His neurologist told me, in a nutshell, that he’d be disabled for the rest of his life and that there was no hope. He called the patient a “sinking ship.”

Knowing about the possible relationship of Lyme to MS, the patient asked his doctor for antibiotics and was prescribed a month of minocycline, which helped significantly. But when the antibiotic stopped, he relapsed, and the neurologist refused to give him any more.

So, he came to me with this very clear history of prior EM, transient response to antibiotics, and a grave prognosis in the absence of effective treatment. I treated him very aggressively for several years with oral antibiotics, along with an infectious disease doctor who treated him with many months of IV antibiotics, and he got much, much better. The majority of his lesions resolved and he was able to get off of disability.

One of my other patients was paralyzed on the left side of his body with a diagnosis of MS and his paralysis resolved with antibiotics, as did his brain and spinal cord lesions. He has not relapsed in ten years, but pulses with 2-3 weeks of oral antibiotics about six times per year because relapses are very common when severe central nervous system illness has become established.

I often have patients come to me on standard MS drugs and I add in some simple tetracycline-based regimens and their symptoms improve and their lesions resolve. I’ve had doctors tell me they think it’s a coincidence when my patients get better, but it doesn’t take a rocket scientist to see what’s happening.

How do you feel about immunosuppressant drugs?
I think they’re dangerous and personally would not take them. They’re not treating the underlying cause of any disease! They’re just suppressing symptoms, at the cost of possibly fatal illness.

The TV commercials for these types of drugs invariably list infections, cancer, and new or worsening heart failure. I think you have to ask yourself why one would develop new or worsening heart failure on an immunosuppressive drug.

Because they’re suppressing Lyme?
Yes, that’s what I believe, or some other infection. There’s data linking Bartonella to heart failure as well.

Then why aren’t doctors routinely ruling out Lyme before giving a serious auto-immune diagnosis?
I don’t know, but they should. There are a lot of group dynamics, it’s like a sociology experiment gone wrong; what prevents doctors from seeing the obvious when they’re told it’s not possible?

A lot of medicine is dogmatic. Doctors are not taught to think as they go along; they’re taught to read guidelines and they just practice but they’re not investigating the processes themselves.

Source: Huffington Post

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Lawmakers Hear Emotional Testimony At Hearing For Lyme Disease Bill

Legislation Would Medical Examining Board Come Up With Standards For Diagnosis, Treatment

Lawmakers heard emotional stories of how people’s lives have been affected by Lyme disease at a hearing Wednesday for a bill supporters say would improve diagnosis and treatment of the tick-borne illness.

Susan Allen of Hartland used to be a teacher and a runner, but now she can’t work and has trouble walking after Lyme disease infected her brain. After waiting 4 years for a diagnosis, she describes herself as a “battle-weary warrior.”

“I’m a veteran of a war I never signed up for, and a victim of a battle between two entities: my government and the medical establishment,” she told lawmakers.

Other victims of Lyme disease testified that they went to countless doctors who misdiagnosed their ailment, or who wouldn’t treat them at all.

The bill up for consideration would have the Medical Examining Board come up with rules on how to best diagnose and treat Lyme disease. The legislation faces opposition from the Wisconsin Medical Society, which asserts it would be unprecedented to have the board set such rules.

Dr. James Conway, a pediatric disease specialist with University of Wisconsin Health, told the Assembly health committee there are national guidelines for Lyme disease, and that this bill may be a solution looking for a problem.

“We have an obligation to do no harm, and we now know that unnecessary antibiotics lead to resistance, and long courses of antibiotics lead to all sorts of complications,” he said.

Those complications include problems like clostridium difficile diarrhea, commonly known as C. diff.

Lyme disease occurs mostly in the upper Midwest and northeast part of the country. It can cause fatigue, joint pain and even affect the central nervous system.

One of the bill’s authors, Rep. Melissa Sargent, told the committee how her 10-year old son was treated for the disease after he got a fever, fatigue and strange rash.

“Probably every single one of us has a story of someone that we know, that we love, that has been touched by this. We are an active community. We are a state that loves being outdoors,” she said.

Rep. James Edming, a member of the health committee, talked about his own bout with Lyme disease.

“I’m almost scared to go into the woods — and I live in the woods,” he said. “You can’t walk around with this big jar over top of yourself with a cap on top of it.”

Rep. David Craig, another author, said the bill differs from laws in Maine, New Hampshire and Connecticut, which protect doctors from license sanctions for prescribing controversial Lyme treatments. Craig said this legislation provides a clear direction for medical professionals regarding what steps can be taken to treat long-term symptoms of Lyme disease.

Source: Wisconsin Public Radio

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Battle Rages Over Lyme Disease Bill

Insurance companies and patient advocates are battling it out on Beacon Hill over a controversial Lyme disease bill that would mandate long-term insurance coverage for patients who say their bodies are racked with the chronic effects of a disease that plagues thousands of Bay Staters each year.

Source: Boston Herald

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Lyme Disease Insurance Bill Could Mandate Long-Term Coverage

Should this bill pass, it would mean that patients struggling with this condition will benefit from continued coverage.

Lyme disease insurance isn’t necessarily something that people are always talking about, but it is an issue that becomes tremendously important to the millions of people who are afflicted with this tick-borne illness.

In Massachusetts, this bill is currently being battled out between patient advocates and insurance companies.

The Lyme disease insurance bill is certainly controversial. If it should pass, it would require long-term insurance coverage for patients who are experiencing the chronic symptoms of the disease, which affects thousands of people throughout the state with every new year. The disease is not only often difficult to diagnose, but it also comes with a broad spectrum of different kinds of symptoms and effects. These can be highly costly to the patients and can be financially detrimental.

There have been many reports of people without Lyme disease insurance who have remortgaged their homes.

These individuals are simply too sick to be able to keep up a steady job and find themselves not only without an income but also facing expenses related to treating the various symptoms. According to Trish McCleary, an advocate for Lyme disease patients and a former Massachusetts Lyme Disease Commission member, “We’ve got people remortgaging their homes. They’re too sick to work.” She believes that if this bill passes, it is “going to put people back to work. It’s going to save lives.”

The bill, entitled “An Act Relative to Lyme Disease Treatment Coverage,” has been filed in the Senate and in the House. It would require that the mandatory coverage for the condition be lengthened in a significant way. Currently, the required insurance coverage is for two to four weeks of antibiotics. The bill calls for treatment regimens that would extend as long as a doctor deems them to be necessary.

Rep. David Linsky and Senator Anne Gobi have sponsored the Lyme disease insurance legislation, which also boasts 140 co-sponsors and is expected to be decided upon this week. This comes at a time in which the state has reached the second highest incidence of this disease in the United States.

Source: Live Insurance News

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Making strides against chronic Lyme disease

Click here to watch video.

Each year about 300,000 people in the United States will get Lyme disease, a tick-borne illness. The majority — about 90-percent — of those who get Lyme disease will take a short round of antibiotics and within a few weeks feel better. But doctors say 10 percent will develop long-term health problems known as post-treatment Lyme disease syndrome, or PTLDS.

Dr. Kim Lewis leads a Lyme disease research team at Northeastern University’s Anti-Microbial Discovery Center in Boston. He says doctors do not know what the difference between those people who will and will not develop PTLDS. The symptoms of PTLDS, also known as chronic Lyme disease, can be debilitating.

PTLDS brought Dr. Lewis and other researchers from all fields of science, medicine, and the environment together at conference in New York City at the Icahn School of Medicine at Mount Sinai. These experts are sharing what they are learning about fighting Lyme disease and its long-term side effects.

Dr. Lewis and his team of researchers in Boston are trying to solve problems on several fronts. He also hopes within the next year or two there will be a blood test available to determine if you get Lyme disease if you will be among the 10 percent likely to develop long-term problems. Knowing that would help doctors immediately prescribe a more aggressive antibiotic treatment.

Dr. Lewis says he and his team are testing a mixture of drugs already on the market being used for something else they believe will also work on solving the long-term effects of Lyme disease.

Source: Fox 5

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The Scary Truth About Lyme Disease

Michael Radonich remembers the day he got Lyme disease: It was late August 2012, the beginning of his first semester at the Wharton School in Philadelphia. He and his classmates had boarded buses for a day of ropes courses and bonding activities at a campground in the Pennsylvania woods.

About two weeks later, Radonich suddenly awoke to shooting pains in his scalp, as if someone had clipped electrodes to his temples. His heart rate began fluttering between 60 and 140 beats per minute. His experienced severe double vision, and then the left side of his body went numb. He was 28 years old, much too young to be having a stroke.

The doctors at the student health center couldn’t figure it out, so Radonich went to his family doctor in Connecticut, who couldn’t figure it out either. In all, Radonich saw 15 doctors, including specialists in four states, and not one could explain his symptoms.

“One told me I had developed a cardiac problem overnight,” he says. Another was convinced he had “classic multiple sclerosis.” He spent six months searching in vain for the cause of what ailed him. He took medical leave from school before Thanksgiving.

Finally, in early 2013, he saw a doctor who ran some tests that came up positive for Lyme disease, a tick-borne infection that afflicts more than 300,000 Americans every year. A tick had bitten him that day in the woods.

Long story short, Radonich spent the next two years on intravenous antibiotics—having powerful drugs pumped into his body on a daily basis—and living with his parents as a virtual invalid.

But even though Radonich lost those two years and spent tens of thousands of dollars on treatments not covered by insurance, he’s now doing better and hopes to one day say he’s cured. He got engaged in March, graduated from Wharton in May, and is working at a private equity firm in Boston. But not everyone who tangles with ticks is so lucky.

WHAT IS YOUR REAL RISK OF LYME DISEASE?
Lyme is the most common vector-borne disease in America, dwarfing West Nile, Zika, and chikungunya. More than 40,000 cases of diagnosed Lyme disease are reported to the CDC each year, but the true number of new infections, the agency estimates, could be as high as 376,000.

Since it first appeared in Old Lyme, Connecticut, in 1975, where people started suffering from a mysterious outbreak of arthritis, the disease has spread along the Northeast coast, with other clusters in the Upper Midwest states of Wisconsin and Minnesota and along the coasts of California and Oregon.

I live in a wooded area in central Pennsylvania, where Lyme is common. Many of my friends and neighbors have gotten the disease. For most, it was straightforward: a tick bite, the classic bull’s-eye rash, some joint pain and flu-like symptoms, and then two to four weeks of antibiotics until it went away.

These are the sorts of cases envisioned under the treatment guidelines of the Infectious Diseases Society of America (IDSA). But not every case fits into this shoebox.

Take, for example, Fred Long. Now an attorney in Lebanon, Pennsylvania, Long was a 24-year-old just entering law school when he started to feel bad, with severe knee pain and a lack of energy. Then his jaw locked up, and some days he could barely get out of bed. Long eventually persuaded his doctor to test for Lyme. (The doc was reluctant because Long had never had the rash and couldn’t remember being bitten by a tick.) “My test came back negative,” he says.

It took him 11 more months of feeling terrible before he finally saw another doctor, a Lyme specialist. This time he tested positive for Lyme antibodies. But the disease was now well advanced. He spent a year on antibiotics. Now 30, he’s feeling better, but he’s still not 100 percent.

That’s because the longer you go without treatment, the worse the symptoms can become. A delay of a few months can turn a relatively easy-to-treat infection into a serious, systemic problem. Long was initially misdiagnosed because his case didn’t fit the IDSA guidelines.

“If you’re lucky, you’ll see the rash and your doctor can start treatment. If you don’t, then your treatment could be delayed,” says Brian Fallon, M.D., director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.

Indeed, several physicians have been brought up on disciplinary charges for not following the guidelines. This has a chilling effect, some Lyme survivors say, making doctors more reluctant to diagnose the disease.

“In my opinion, an enormous amount of harm has come to a great many patients from doctors’ strict observance of the IDSA guidelines,” says Steven Phillips, M.D., a Connecticut-based specialist in tick-borne diseases. The guidelines not only blind doctors to the likelihood of disease but also are cited by insurance companies to justify their denial of coverage for long-term antibiotic treatments.

WHY LYME IS STILL SPREADING
There’s a popular Internet conspiracy theory that goes like this: Lyme disease was created by scientists on Plum Island, off the Long Island coast, in a secret government laboratory devoted to germ warfare. While there’s no truth to this rumor, the way the disease works is just as diabolical.

Most people think deer are the main spreaders of Lyme; after all, we know the disease mostly comes from the bite of the common deer tick, and deer are everywhere Lyme cases occur. But the true villains are much smaller and more numerous.

On a Thursday morning in May, I follow researcher Kelly Oggenfuss into the forest on the grounds of the Cary Institute of Ecosystem Studies in Millbrook, New York. Stopping at an orange flag, she picks up a footlong metal box. With a gloved hand, she extracts a terrified-looking rodent. “These guys,” she says, pinching the mouse between the shoulder blades, “are really good at passing along Lyme disease to ticks.”

This one, Mouse E7243, is particularly efficient. Oggenfuss quickly discerns that the field mouse is pregnant and lactating. Even though it’s only May, it’s on its second litter. It is also carrying a tick. “See it? Between the tips of my tweezers?”

Actually I don’t, until I do; it’s a smudge the size of a poppy seed. The tick is a nymph, a juvenile. According to research by Oggenfuss’s colleague, Richard Ostfeld, Ph.D., some 35 percent of nymphs in this area are infected with Borrelia burgdorferi, the bacteria behind Lyme.

And if this young tick weren’t already carrying burgdorferi, it probably would be soon: 75 percent of the mice in these woods harbor the disease. “They’re the reservoir,” says Ostfeld later in his office. “Their bloodstreams are crawling with these bacteria, but they feel no ill effects.”

Blowing on the mouse to ruffle its fur, Oggenfuss quickly discovers two larvae as well. They’re barely visible, smaller than the period at the end of this sentence. The good news is that larval ticks aren’t infected with Lyme (yet), so if one bites, you’re probably okay.

The bad news: After dining on the blood of Mouse E7243, it has a 75 percent chance of picking up Lyme bacteria. Which means that within a few days, there will probably be three more Lyme-infected ticks in these woods—along with yet another litter of field mice to carry and transmit the disease to still more ticks.

What’s more, these small wooded areas are especially conducive to the spread of Lyme. “Intact nature protects us,” Ostfeld says. “It’s only when we chop it up and make it uninhabitable for predators, the hawks and foxes, that we increase risk. What we’ve found is that small forest patches, 1 to 2 acres, are the riskiest places for Lyme disease. And that’s where we put our houses.”

LYME TESTING: A HUGE FAIL
It doesn’t take long before I start to wonder: Are Borrelia burgdorferi bacteria swimming around in my bloodstream?

I spend a lot of time outdoors walking my dog and riding my mountain bike. I’ve picked ticks off of my body, although I’ve never found one that was engorged, which is lucky.

According to Ostfeld, there’s a grace period of about 24 hours between when the tick attaches itself to you and the burgdorferi start flowing.

Still, I worry. Ticks are everywhere: On my dog, on the furniture, even on the inside windshield of my car. I’ve never had any of the classic symptoms, but I often feel fatigued and my brain sometimes gets foggy, which are two more typical (if subjective) symptoms of long-term Lyme. I often feel achy too—but that could simply be because I’m 49 years old.

When I return home from a bike ride and find yet another tick embedded in my leg, I make an appointment to get tested. My doctor scrutinizes the spot, quizzes me thoroughly, and then reluctantly agrees to do the test.

Under the IDSA guidelines, which he follows exactly, in the absence of a rash a Lyme disease diagnosis requires two positive blood tests.

The first is a screening test called an ELISA to determine whether antibodies are present. If that’s positive or inconclusive, part two is a Western Blot, a standard analysis that searches for evidence of antibodies associated with the Lyme disease bacteria.

You’d think a bug this potent would be easy to detect. It’s not; Lyme disease tests are notoriously inaccurate in the early stage of the infection. In patients with a recent bull’s-eye rash, the ELISA turns up positive less than half the time, according to Elitza Theel, Ph.D., an expert in blood testing at the Mayo Clinic. “If you’ve noticed that you have a tick bite and a rash, you really don’t need to be tested,” she says. You’re infected.

It’s when you don’t recognize the rash, or there isn’t one, that problems arise. Experts say it’s important to treat Lyme as early as possible. But the antibodies take a couple of weeks to show up in your bloodstream.

This, in part, is because of another evil-genius feature of burgdorferi: As it sits in the tick’s mouthpart waiting to dive into your bloodstream, it tricks its host into creating a chemical disguise that renders it invisible to your immune system. Meanwhile, even though you won’t test positive for at least two more weeks, the infection is progressing.

On the plus side, a positive ELISA is more likely in patients who have established Lyme disease. But when they go on to the confirming Western Blot, more problems can arise.

For one thing, although the test covers 13 antibodies that are almost all unique to Lyme, the guidelines require multiple hits before a diagnosis can be made. Also, research reveals wide variation among the many different labs that offer Lyme testing.

One study found that some labs failed to detect Lyme antibodies via Western Blot in a few people with confirmed Lyme disease. It also found that some patients with Lyme bacteria test positive even though they’re fine.

So it’s small comfort when my initial Lyme test comes back negative. I get tested again, this time with another, more sensitive ELISA known as the C6. This time it comes back positive—slightly.

So there are Lyme antibodies in my body, potentially. The doctor also orders a Western Blot, and it shows only one antibody out of 13. Officially, I am negative. But there is a whiff of Lyme exposure—and a whole lot of uncertainty.

THE SCARY TRUTH ABOUT LYME DISEASE
Once it’s made its way inside the human body, burgdorferi hides in plain sight. It enters by way of the tick’s salivary secretions and then quickly migrates into the skin. From there it travels through the bloodstream to other “fixed tissues,” such as your joints, heart, and brain, explains Peter Krause, M.D., a senior research scientist at Yale School of Public Health. “It doesn’t stay in the blood very long.”

Scientists believe this partly explains why Lyme is so hard to detect and treat. Two places where burgdorferi especially like to hang out are the brain and central nervous system, says Amiram Katz, M.D., a former professor of neurology at Yale. “They feel comfortable in those places because the immune system there is weak,” he says. “It’s a less hostile environment.”

Related: 4 Totally Useless Things You Do to Try to Protect Yourself From Germs

No wonder the neurological symptoms of Lyme are so intractable. Around 20 percent of diagnosed Lyme patients—and perhaps many more—say they continue to have symptoms of the disease long after treatment. But this, too, is controversial.

“There is no such thing as ‘chronic Lyme,’” points out Gary Wormser, M.D., chief author of the IDSA guidelines. The official term is “post-treatment Lyme disease syndrome.”

Is it a distinction without a difference? Perhaps. The problem arises because antibiotics don’t kill all the burgdorferi; it’s not like spraying kitchen counters with disinfectant. Some of the bacteria appear to withstand antibiotics and survive, at least for a time. In fact, burgdorferi were found in Otzi the Iceman, who was frozen into a glacier in Europe 5,000 years ago.

Are these latent Lyme bacteria alive? They may be, according to an experiment carried out by a team of researchers led by Adriana Marques, M.D.,of the National Institute of Allergy and Infectious Diseases.

The scientists recruited volunteers who’d been infected with Lyme in the past, and then placed laboratory-raised, disease-free ticks on their bodies. The ticks ended up harvesting live burgdorferi from two of the 23 volunteers, meaning those study participants still had remnants of the disease in their bodies.

Some doctors believe this may explain why some people continue to experience symptoms after treatment.

Add to this the recent discovery of so-called “persister” forms of Lyme bacteria. “They change form and essentially become unrecognizable, and more resistant to stress and antibiotics,” says Ying Zhang, M.D., a microbiologist at Johns Hopkins Bloomberg School of Public Health and one of the first researchers to study the connection between Lyme and these types of bacteria.

This may explain why long-term antibiotic treatment, favored by many Lyme specialists, has mixed results. It works for some patients, such as Michael Radonich, but not for others.

So the symptoms reported by “chronic” Lyme patients must have some other cause—perhaps an autoimmune reaction or even a co-infection. “The majority of people I see who have been diagnosed with chronic Lyme have similar symptoms but don’t have any evidence of ever having had Lyme disease,” says Dr. Wormser.

Some physicians who treat Lyme patients believe that the remnant bacteria secrete substances that make people continue to feel sick.

“There’s an inflammatory response in the body, molecules called inflammatory cytokines that have been shown to be present in Lyme and fibromyalgia,” says Richard Horowitz, M.D., who has 30 years of experience treating the disease. “They make you tired. They give you headaches, memory and concentration problems, muscle pain, numbness, neuropathy. Your moods go off and you can’t sleep at night.

You can have migratory muscle pain, joint pain, and nerve pain. Those are the hallmarks of Lyme.”

It can even affect libido. “Men don’t like to talk about those symptoms,” he adds.

The problem boils down to knowledge. Because there’s so much variation in diagnosis and treatment, patients can end up in limbo—and vulnerable to practitioners selling dubious, unproven, and expensive cures, such as “chelation therapy” and electromagnetic “Rife” machines.

Indeed, the doctor who tested me insisted that I come in and be put on antibiotics immediately. His fee for an initial consultation was $2,000. As in any war, truth is the first casualty and also the last.

“If you think about disease and treatment, the first thing you need to do is identify the bug or bugs that are causing the disease. Next you have to be able to reliably test for those bugs.

And only then can you start testing the effectiveness of a given treatment,” says Adam Sussman, a 43-year-old firefighter who has been battling the disease for more than two years, spending thousands of dollars of his own money. “How can you say if a given treatment regimen works if they can’t even determine if you have it?”

Source: Men’s Health

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