‘Don’t let your guard down during mild weather,’ Lyme disease expert says

HARRISBURG, Pa. (WHTM) – While ticks are most active in spring and summer, they’re taking advantage of the mild November weather.

“Don’t let your guard down. They are out there. The adults are looking for their final blood meals of the season,” said Heather Hearst of Project Lyme, an awareness effort designed to help people protect themselves against the disease.

Hearst says ticks like to hide in leaf piles, so you need to be careful when you’re working in the yard.

She also says symptoms of Lyme disease are similar to having a cold or flu. She says people need to take all necessary precautions and protect themselves.

“If you know that you have been in an area that has ticks, it would be good to get your clothes off as soon as you come inside and put them in the dryer on high heat for 10 minutes,” she said.

She says people check their entire body for ticks and do the same for their pets.

Pennsylvania is among states with the highest number of tick-related illnesses.

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Source: abc27

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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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