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Where IDSA Guidelines Fail, Leading Lyme Doctor Succeeds (Part II)

Dr. Steven E. Phillips is a Yale-trained, world-renowned Lyme specialist who has treated over 20,000 patients. He is well-published in the peer-reviewed medical literature and was a former president of The International Lyme and Associated Diseases Society. This is part 2 of my interview with him:
03/08/2016 10:06am ET | Updated March 9, 2017
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Brain disease with memory loss due to Dementia and Alzheimer's illness with the medical icon of an autumn season color tree in the shape of a human head and brain losing leaves as a concept of intelligence decline.

Dr. Steven E. Phillips is a Yale-trained, world-renowned Lyme specialist who has treated over 20,000 patients. He is well-published in the peer-reviewed medical literature and was a former president of The International Lyme and Associated Diseases Society.

I slightly amended the title of Part II of this interview to reflect the fact that the CDC promotes the injurious guidelines of the IDSA about Lyme. These guidelines negate hundreds of scientific studies proving the chronicity of Lyme, and have caused immeasurable suffering, and even death. If you want to learn more about the CDC's perilous choice to give preferential treatment to IDSA over ILADS doctors, go here.

This is Part II of my interview with Dr. Phillips. You can find Part I here.

What are the psychiatric manifestations of Lyme?
Over twenty percent of my patients have significant psychiatric illness, it's rampant in this field. Lyme has been linked in the medical literature to everything from anxiety and depression to OCD, bipolar disorder and even psychosis. Lyme causes these conditions due to actual brain infection.

Some patients have also developed PTSD from the poor treatment they've received from their prior physicians when trying to get help.

One of my most wonderful patients had a very severe chronic fatigue presentation with POTS which came on in her late teens. She was passing out all the time and had to be carried from room to room.

Her doctor told her family she was just looking for attention, and that the best thing to do would be to ignore her and it would stop. So, they ignored her, and she lay there and didn't get better until she got diagnosed with Lyme and Bartonella. Now she's much better though still has PTSD about going to doctors.

It seems there are no limits to the destruction Lyme can cause.

There is no separating the mind and body in Lyme; there is no part of the body that Lyme can't infect, including the brain. This should not come as such a shock to anyone since we already know that psych illness is brought about by other infections, like syphilis which is closely related to Lyme; and brucellosis which is closely related to Bartonella.

Do people's psych illnesses get better with antibiotic treatment and has anyone ever had to be institutionalized?
Yes and yes. For example, I had a patient whose wife brought him in and he was very confused -- extremely slow and dulled -- and when I started him on tetracycline, he became violent and agitated, punching holes in walls. The police were called.

He had to be institutionalized. The doctors at the psychiatric hospital here in Connecticut recognized that he was having a neuropsychiatric Herxheimer and kept him on the tetracycline.

His psychiatric symptoms resolved with continued treatment and he came to see me afterwards as a completely different person from when I met him.

There was also the bright, insightful young woman suffering from new onset of anorexia in her early twenties. She was very eloquent in how she described her food obsessions gradually dissipating during antibiotic therapy.

Another patient that stays with me is a high-level corporate executive at a Fortune 500 who had new onset of such severe anxiety that he would run out of board meetings and sit on the toilet and shake and cry. They attributed all this to his job stress, but he'd been at the top of his game for many years and never had anything like this. It was very sudden and made no sense, but he had no physical symptoms, so was hard to diagnose.

When I treated him, he also had a very large neuropsychiatric Herxheimer. He is completely better now and has been for many years.

Should kids who have sudden onset of psychiatric illness be assessed for Lyme?
Definitely, and for Bartonella. I would certainly rule out the possibility of a treatable illness that doesn't require lifelong psychiatric medication.

There's something described as PANDA's in kids. It's an acronym for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections because initially they thought it was just after a strep infection, but they've made it more general and changed it to PANS, which stands for pediatric acute-onset neuropsychiatric syndrome. A prominent feature of the illness is new onset OCD and tics, which I've also seen come on in association with Lyme and Bartonellosis.

Why do some remain so chronically ill while some get better?
I think it's partly genetics but mostly due to the strains of these infections; some are wimpy, some are horrible. Each exposure is like Russian Roulette.

I see so many patients who say they get Lyme every season and take three weeks of Doxy and are fine. Then their most recent case makes them chronically ill. They ask me, "Why now?" And I have to attribute it to a worse strain or a co-infection because it's not like their genetics have changed.

They can get better; it's not like they're doomed, but they need to be treated longer and/or more aggressively than with three weeks of doxy. It's interesting how many people tell me they thought Lyme was overblown until they got that bad strain.

How many physicians have you treated for chronic Lyme, have their attitudes changed during the course of treatment, and will any of them now treat Lyme?
I've treated about a hundred and, interestingly, only three will treat chronic Lyme. Their attitudes are always anger and frustration at how this is not taken seriously in the medical community, but at the same time, the majority of them don't want to take on the burden of treating chronic Lyme.

How long is the wait to see you?
Many months. I really need another doctor in my practice. Feel free to put the word out- I'm looking!

Is there truly a Post Treatment Lyme Disease Syndrome, as stated by the IDSA/CDC, or is it all under-treatment or treatment failure?
I don't believe there is an autoimmune component in the absence of chronic infection. It would be awfully coincidental that a second disease of mysterious etiology, with the same exact symptoms of the first disease, would come on and replace the first disease.

Oh, and by the way, we have no test to prove the absence of the first disease and there's ample scientific evidence to prove its persistence despite antibiotics.

I've told other smart non-medical people about this theory of Post-Treatment Lyme Disease Syndrome, and they find it utterly absurd and ask me how doctors could have come up with such an idiotic theory. I have no idea. It makes no sense!

So, should we stop calling it PTLDS? Do semantics matter?
I think the semantics do matter. To use that phrasing makes it seem like a post-infectious, non-antibiotic responsive situation when even the NIH-sponsored studies have demonstrated that it is antibiotic responsive in spite of having a high relapse rate.

I should tell you that three Infectious Disease doctors I went to before I found you told me I had PTLDS when I had a raging Lyme infection that nearly killed me. I can only recommend patients be assessed and treated for Lyme by ILADS-trained MDs and practitioners (AKA 'Lyme-literate doctors' or 'LLMDs').

Stories like that are nauseating.

When presenting with a Lyme rash, as in your case, patients are invariably told they'll be fine with a month of single agent doxy since they caught it early. You're never told you have a likely failure rate and to look out for symptoms, or better yet, to be offered more aggressive antibiotics in the beginning.

So, what do you do when a patient presents with a bulls-eye rash (EM)?
I'd rather treat EM patients with more aggressive antibiotics early on then deal with treatment failures later. I do this because the published failure rates for EM patients is such that approximately 61 percent can have persistent symptoms even after about a month of doxycycline, which is the standard IDSA recommended treatment.

Given that the IDSA guidelines have irretrievably destroyed countless lives, please tell us specifically what you recommend in order to avoid a life of chronic illness from Lyme.

I use doxycycline 150 mg twice daily along with azithromycin, 250 mg twice daily for four weeks and then pulse a few times for two weeks off and on with an alternating tetracycline combination based regimen, which I prefer over doxy for most applications. I use doxy as part of the initial EM regimen because it's more well-studied in that regard. After that, I switch to tetra because it works better in almost everyone. I can only remember one patient to have failed this regimen in the past 20 years.

What if someone has a fresh bite and no symptoms yet?

I definitely advise treating tick bites. Waiting for symptoms is unwise. In my established patients I offer two weeks of 150 mg doxy twice per day -- 100 mg twice per day if they're petite -- if treatment starts within hours of the tick bite. I've not seen obvious illness following this regimen.

For how long do you usually treat?
Six to nine months of antibiotics is my average, with some only a few months and some a few years. I'm a big proponent of pulse therapy, which means going on and off drugs over the course of treatment, so it's over about nine to 12 months of time usually.

How do you know when to stop treating?

It's important to assess symptoms, and if people are still getting Herxheimers, then clinically you can say there's good evidence that the infection is still there. Then, we make an informed decision together.

What about congenital Lyme? Is it possible for a mother to pass it on during pregnancy?

Yes. It has been demonstrated in medical literature. We know Lyme can cross the placenta and we know it can cause stillbirths, and upon autopsy, they've recovered Lyme bacteria. It's not disputed.

Unfortunately, there have been no studies to say what the best course of action is if you are pregnant with chronic Lyme. We do know that an acute infection while pregnant, if left untreated, is extremely risky and must be treated.

In terms of people with chronic symptoms, I have seen it both ways; patients with no antibiotic treatment who deliver healthy babies and I've seen bad situations without treatment. I have not seen any bad outcomes with patients who were treated during the entire pregnancy.

So, would you keep a pregnant woman on an antibiotic if they have Lyme?
I've done it, though I also say there are risks. I'm not worried about the developmental risks of antibiotics to the fetus because we would only use pregnancy-safe antibiotics, but there are other risks to antibiotics in general, like C. Diff. colitis or allergic reactions, that could be dangerous and potentially result in loss of the baby.

Again, there are no good studies on this and we need them!

Is Lyme transmissible through breast milk?
I think the possibility exists, and I don't encourage my Lyme patients to breast feed. I would mitigate that risk.

How about sexual transmission?
There is limited data out there showing partners that have the same strain of Lyme as one another. It needs further study, but in my opinion, it is probable.

Is Bartonella also sexually transmitted?
There is data that Brucellosis can be sexually transmitted and since they're so closely related, I think that it's a reasonable extrapolation. It's like Lyme being a cousin to Syphilis, in my opinion.

Why do the guidelines change with infectious disease like HIV and Syphilis when new scientific evidence comes to light but the guidelines for Lyme remain the same?

It is certainly puzzling and very frustrating. It feels like the world's gone mad. How can people not see what's right before their eyes? I don't know. I think there are those with financial conflicts of interests, and I would say the documentary Under Our Skin would be a good source of information about this.

Given that Lyme is actually a multitude of infections, is there a problem with the name?
I think so, because it oversimplifies the illness. When I use the word Lyme, I do so collectively, to include all the co-infections.

Is there hope for a cure?
I think there is, certainly for Borrelia. We know enough about the physiology of the organism that there's no reason there can't be.

But I think you have to look at the truth of what's going on. Nobody's going to look for a cure if they're denying that the infection persists after ten days of Doxy.

With hundreds of peer-reviewed studies demonstrating evidence of persistence, can't we simply go around these dogmatic naysayers, as our friend Dr. Neil Spector calls them, and get to the researchers--raise our own money-- and do the work to find a cure?
Absolutely! I would advise side-stepping those folks because you can't ever change people.

My grandfather, may he rest in peace, used to say, 'You punch one skunk in the nose and there's another standing right behind him.' I've been punching skunks in the nose for most of my career. Now, if I come across a doctor whose opinion is not based in science, I move on.

But generally, when I come across a well-meaning, intelligent physician that has drunk a bit of the Kool-Aid and believes that there's no evidence supporting chronic Lyme, I send over my IDSA Hearing written testimony. It's 81 pages long with references to 226 peer-reviewed medical journal articles. It not only directly disputes the IDSA Guidelines statements, it demonstrates how the IDSA Guidelines authors themselves are contradicting their own published work.

There's a word for their type of behavior: It's called hypocrisy.

For the exclusive, riveting video of Dr. Phillips' IDSA testimony, go here.