Treating Lyme disease symptoms, a conversation with Ginger R. Savely, RN, FNP-C.
A nurse practitioner's perspective on treating Lyme disease symptoms in both individuals and families.
Welcome, and thank you very much for joining us, Ginger. How long have you been working with people who have been diagnosed with Lyme disease?
Ginger Savely: I've been treating Lyme disease for about eight years. Through the years, it's taken over more and more of my practice. It's been 100% of what I do the last three to four years, and in the initial years it started, gradually, becoming a higher percentage of part of my practice, to where before I knew it, that was what I was doing.
And I think that's just because there is such a scarcity of health care providers who will treat Lyme disease. So when there is one, you're bombarded with people who want to see you. So, before I knew it, I had been initially providing primary care, I was a family practice nurse practitioner. And now, I really just treat Lyme disease, that's all I do. And, other Tick Borne Diseases, and Morgellon's disease, since that has now become really highly associated as well with the other Tick Borne Diseases.
What is the difference between Morgellon's and Lyme disease?
Morgellon's, of course, the primary symptom is the skin manifestation of the disease. The lesions, and the fibers that come out of the lesions are what makes Morgellon's disease distinctive.
Is it the same bacteria, the Borrelia bacteria?
Oh, no. We have no idea what causes Morgellon's disease at this point. We've just seen that a lot of people who have Morgellon's disease also have Lyme and other Tick Borne Diseases. We've noticed that association, but nobody knows why.
When I was diagnosed with Lyme I was living on the Central Coast of California. I was told by the infectious disease doctor that they didn't have Lyme disease in California. How many times have you dealt with patients whose primary doctor told them it didn't exist where they reside?
Every single patient I've ever seen.
You're kidding!
First, I was treating patients in Texas. Of course, Texas doctors are convinced that we don't have anything like it there, and no matter what state patients come to me from, because I do see patients from all over the United States, it's amazing to me to hear that their physician thought this wasn't a possibility. Even in an area of Maryland that is known to be one of the most highly endemic areas in the United States. I had a patient from that area, and still, the doctor said that couldn't be Lyme, because we don't really have it there. It's amazing how much lack of knowledge there is about this.
How many new cases of Lyme do you see per year?
I don't really keep track of that. I know I've treated about a thousand Lyme patients now. I have new ones coming in every week, probably four or five new ones every week.
Lyme disease symptoms are vast and varied. How do you diagnose Lyme, when all the symptoms can manifest so differently from patient to patient?
Right. Well, I always tell my patients that the diagnosis is like putting together the pieces of a puzzle. There are a number of different things that all have to fit together, there isn't just one thing that can happen and make you diagnose the disease. It has to be a combination of factors. If the history is right, in other words there was some potential for exposure, and the lab tests, of course, play some part in this, although they are so often inaccurate. And, if the symptoms fit, the typical symptoms. And, there are a few things on exam that I notice, but these are not diagnostic of Lyme, they just add to the case for Lyme.
Then, the two immune markers are also very important that we're using right now, in helping to decide whether it's a true Lyme case. Both the CD-57 natural killer cell count, and the C4A complement protein count are measured. And a high C4A and a low CD-57 make us even more suspicious of a Lyme case.
Each symptom of Lyme disease taken alone is something that probably everybody's had to some degree or another, at some time in their life. It's the severity of the symptoms, and also the quantity of the symptoms that makes one get suspicious. Everybody has had fatigue, everybody's had headaches, everyone's probably had some pains here and there in their life. But when these symptoms become overwhelming and the person becomes incapacitated, then that's something you need to really look into.
That must vary according to the individual. Do you see patients who think they have Lyme, but do not?
I actually have had a few cases where I really did not think they had Tick Borne Disease. But, I have to say that usually, by the time they come to me, they're pretty well-screened. They've already been through every other avenue, they've had many other conditions screened out. And also they come to me because there's also a great, high degree of suspicion. So yes, most of the patients I see do have Tick Borne Disease.
I have though on occasion seen people, and primarily when I was doing a combination of primary care and Lyme disease, I would see people who thought they had it, and I really did not think they had it. But I have to say most of the patients that come to me do have Tick Borne Disease, because there's a self-selection process going on there.
Have you ever seen whole families that are all infected, or couples coming in together that are both infected?
Oh, all the time. I treat many, many families. In fact, I had one family I was treating in Texas where I was treating four generations at once. First of all, there's the mutual exposure potential. For example, the family I just mentioned was living on a ranch in Texas where they were constantly exposed to ticks. But then there's also something about a certain tendency, maybe genetically determined, that certain people are going to be more prone to succumbing to this infection.
In other words, there are people who walk around with this infection and they're totally fine, and they don't have a problem. But there are going to be certain families, that, when exposed to the Borrelia bacteria do become very sick. And there has been some work done on this that showing that there are some genetic typings that are going to get more sick with the infection than others. So that's why when you see vast members of families, where when I treat one, they say 'now I'm going to send in my cousin in, my aunt, my sister, my brother...' and one by one you start to find all these family members who have similar symptoms.
You think there are actually genetic dispositions for the infection?
Yes, first of all, some people attract ticks more than others. Just like, you know how some people attract mosquitoes more than others, a bunch of people can be standing outside and one person will get thirty bites, and another people will get none. That same is true of tick bites. Some people are just tick magnets, the ticks just love them, and go to them, and other people not so much. So, there's that aspect, and also just the aspect of predisposition toward becoming disabled by the infection. Because it is always impressive to me, how many people do have this infection that are totally fine. Many times I will check family members that are still healthy, and they actually show very positive for the disease, although they have no symptoms.
When you think about it, there are so many things like that. For example, they say that a vast majority of the population has the bacteria H-pylori, which is known for causing ulcers. However most of the people who have it, don't get an ulcer. Just because somebody has H-pylori doesn't mean they're going to get the ulcer, so obviously there are other factors at play there. And, the same is true for many viral titers, there are so many viruses out there that are very prevalent in the population, but not everybody actually gets sick with the virus. So, this is seen with infectious disease, frequently. Not too unusual of a thing.
What do you recommend for treatment? Are there other therapies that go along with the basic antibiotic regime, such as exercise, yoga, nutritional supplements?
I treat according to the guidelines of ILADS, the International Lyme and Associated Diseases Society, and so I do treat with high dose antibiotics for as long as it takes for the patient to get well. Now, that's of course in the case of the chronically ill people. I have treated some acute cases as well, people who've come in with a bull's eye rash. And we're able to treat them for a much shorter time, and then they're fine.
But, the majority of people who come to me have been sick a long time, have been misdiagnosed or undiagnosed for many years, so they already have a well established, well-disseminated infection. And those are the people that do require the high dose antibiotics for long periods of time, either orally, or intra-muscularly, or sometimes intravenously.
Now, I always tell my patients that the approach is from two angles. One is to decrease bacterial load, by giving antibiotics to kill the bacteria. The other is to strengthen the immune system. Because we can't simply, if the immune system isn't functioning very well, you can give a person all the antibiotics in the world, they're not going to be able to fight the infection. So the approach has to be from two directions, and hopefully the bacteria levels decrease to a point, where the newly strengthened immune system can take over, and just kind of take it from there and keep the infection at bay.
Because when you have a disseminated infection that's been there a long time, you really do not, frankly, have a chance of obliterating the infection. What you do is you put the infection into remission. You get it to a point where the body can take over and can coexist with the little bit of infection that's left and sort of keep it at bay. So, I don't mean that at all as a discouraging thing to say, like 'oh, you can never get well.' No, you can get well. What I do say, is that, and I think it's only realistic to say this, is that you cannot completely obliterate these infections.
Because if you study about the Borrelia bacteria, and there is a great book about this by Arno Karlen, called Biography of a Germ. Once you study about this bacteria you realize that it has so many different mechanisms in place for survival, that there's really no way to completely get rid of it. But people get better, though. As long as you strengthen the immune system, people can get to a point where they can go on and do well, as long as it stays in the background.
I have a treatment manual for my patients, where I go into a number of ways about strengthening their immune system, and this is from many different approaches. So, I do think that's a very important part of the whole thing.
I do think that graded exercise, and by 'graded' I mean it has to start very, very slow and low. You have to start with the mildest exercise of all. You have to forget "no pain, no gain," the old Nike slogan, and you have to start really slowly and gradually build up stamina. People who are sick lose a lot of muscle mass, and I think it's really important to start to build a little muscle mass even by use of the little hand weights, light ones, even, to just keep the muscles active so that you can have more strength and energy. Because once your muscles become very flaccid, then you just don't have very much energy.
It's a multifaceted approach to treatment. You can't just take a pill and hope to get better. I always tell my patients, this is your new full time career, getting better. You know? And it really does take a lot of time and careful consideration to get the body functioning again.
That strikes a chord with me, it's changed my life completely. Please talk about more about how you're using the CD-57 immune marker, and the C4A to test people for Lyme.
The CD-57 is the one we've been using the longest. One of the types of white blood cells are the natural killer cells, and there's a specific type of natural killer cell that is marked with a CD-57 marker, and Dr. Stricker and Dr. Winger, and their studies on this that they've published, showed that people with chronic Lyme disease tend to have very low levels of this CD-57 natural killer cell count. So, what we started to then notice is that this it became a useful tool to help a diagnosis. Because often the sickest patients are the least positive on the tests. Because the tests test for antibodies, and when a patient's been sick for a long time, or they're very sick, they actually have very few free-floating antibodies.
Sort of counter-intuitively, I guess you could say, the less sick someone is, the more positive their test. And the more sick someone is, the less positive their test. So, when we get these barely positive (if at all) tests, on these very sick people, it's helpful to also check the CD-57, and it that's super low, then it just adds more fuel to the fire that this is the correct diagnosis.
Now, there have been problems all along with the use of the CD-57. One, is there's a lot of diurnal and day-to-day variability, so it hasn't been entirely clear yet, what fluctuation in the number is just normal variance. And that fluctuation can actually be pretty high. So, that makes it difficult, although we can see sort a relative change in the number. As we treat, the number does tend to go up and get better.
I have noticed in a small study that I did, that my well patients were always over 100, and my sick patients under 100 in the CD-57 count. Now unfortunately, I think some of my patients really hold too much stock in this number, because they get very, very upset and worried if the number isn't going up quickly enough for them, or if it dips below what they would like to see, it makes them upset.
I keep trying to tell them that this is a tool that sometimes works, but it doesn't always, so it's not the be-all and end-all. This is a tool that can be helpful, but we're not going to just put all of our...
Eggs in that basket?
Yes. Then you've got these occasional patients who are very sick, and test with super high CD-57s. And, what Dr. Stricker and I have noticed is that the most worrisome cases are those with the very abnormally high count and the very abnormally low count. Why this comes out like this, who knows? There's still so much we need to know.
But meanwhile, in the last year and a half, we've been looking at a new immune marker, the C4A. Complement protein.
This is kind of the flipside. This one goes up when the patient is sick, and goes down when the patient gets well. Now, the C4A is very non-specific. So it's not associated just with Lyme disease, as the CD-57 is. The C4A can be elevated in any type of infection. But, let's just say you're treating Lyme and Bartonella for example, and the C4A is high, what you can assume is there's still infection there.
I have found myself that this marker is a little more useful, and really is a much more reliable indication of ongoing infection. I'll use it both for helping with diagnosis, but also for following treatment.
So, the C4A is helpful, and I find that I use it a lot when I have a patient who I've been treating for a long time, and they're really very much better. But they still have some symptoms, but we just can't decide: Should stop treatment now, or not? Are these symptoms just there and they're going to be there forever, and we're just going to learn to live with them? Or do these symptoms indicate that there is still infection that must be dealt with.
So, in those cases, I'll use the C4A to help me with that decision. And if the C4A is still elevated, then we say 'hmm, well, ithis looks like your symptoms are still due to ongoing infection, so, let's continue treatment.' But if it's normal, we'll say, 'maybe this isn't due to ongoing infection. Maybe these symptoms are residual symptoms just from prolonged inflammation. So then we'll go ahead and do a trial of going off the antibiotics.
That sounds really important, because many Lyme patients can't even tell the difference between an active infection and a Herxheimer reaction.
Sure. There are so many things that are so hard about treating this illness. I think that's why so many doctors don't want to touch it with a ten foot pole. Because it's just so not cookbook, you know? There are so many difficult decisions that need to be made, all the time.
Like, what you just mentioned, yourself, like a lot of times when you give a patient a medication and the patient gets way sicker, generally we think of that as a Herxheimer reaction. But then, there are times when you're not even sure if it's a bad reaction to the medication or not, in certain cases.
It's difficult, there are choices and decisions to be made, all the time. And every person is so unique, and every case has to be individualized. Like I said, you don't have the comfort of the cookbook approach with this. Like, if I just do this, this, and this, everything will fall in line.
So it's difficult for both patients and for medical professionals.
Oh, yes, it's constantly a challenge to take care of people with Lyme disease because there are so many factors, and many times you don't even know what they all are. Because the tests are all so unreliable, that you never know for sure what co-infections a person may or may not have. Many times that ends up being guesswork. Because they'll test positively only for Lyme, and you start to treat for Lyme, and then as you go along, all of a sudden some new symptoms pop up out of the blue, and you realize that, 'oh, okay, now that we're getting the Lyme infection, the Borrelia infection taken care of, now these new symptoms of Bartonella, or Babesia, may be popping up and becoming clearer and easier to see.
And so, the way I approach treatment, and I think pretty much all of the Lyme specialists do this, is that I treat more on the symptoms than on the lab test. So, if a person is having classic Babesia symptoms, even if their lab test is negative, I'm going to proceed and treat with the Babesia protocol, at least as a trial to see if we get anywhere with this. Because it's worth it. Because, if they do have hidden Babesia that hasn't been diagnosed by a test, and you do put them on a protocol for Babesia, it makes all the difference in the world.
So again, it's always the constant guessing.
Like you said, it's like a big puzzle, for each individual.
Mm-hm. I think that when you treat this, learning how to treat this, I've been talking recently with Dr. Stricker about trying to train people who are brand new to the whole idea of these Tick Borne Diseases, about how to do what we do.
You know it's so difficult, because, I equate it somehow with making bread. You can teach someone how to make bread in the sense that you can give them a recipe. But it's just something you do over and over and over. And every time you just sort of get a feel for it a little bit better. So, at first it's going to flop even though you followed the recipe, but every time you do it you get the feel for those very subtle variations. And that's so much the way it is with this. You just get a feel for it after a while, and it's really hard to teach someone all of those little subtleties.
You asked earlier, about how do I know if somebody really has Lyme. Well, it's funny, but most of us who do this all day every day, we can pretty much diagnose someone as soon as we lay eyes on them. Because we do this all the time, and we pick up on the sensitivities.
I remember I had a friend who was an endocrinologist, and he used to tell me that as soon as a patient walked through the door, they knew if he had an endocrine problem or not. Because that's all they did and that's all they saw, so you become very sensitive to it. There's room for criticism there, by other practitioners who want to accuse us of the old, "you've got a hammer so everything looks like a nail."
And they think that we just think that everyone's got Lyme disease. But, I think it's just more that you pick up a sensitivity for all of the little subtle things that the Lyme patients have. I've gotten to where I see people out in public sometime, and I find myself scrutinizing, and I notice a little droop in their left eye, and I just start wondering if this might be a case.
You can't help it really, I think no matter what you do for a living, you start to become very sensitive to those things.
That makes a lot of sense to me, like you're developing a very special 'intelligence line.'
Right. A lot of intuition gets thrown into it, and a lot of the experiences. It's such subtle things, it's hard to teach that. But that's what we need, we need so many more practitioners who know how to do this, who know how to treat these diseases. The learning curve is so steep at first, but we do have people coming through, and we're training new people. Usually there are people that already know something about it anyway, because that's why they got interested in coming and doing the training.
So if health care providers are interested in learning more about treating Lyme disease could they contact you and get direction?
Yes, exactly. Health care providers can do that. Mostly, I would just have to refer them to some good references.
Obviously, I can't for legal reasons give medical advice to patients, because that's something that we in the Lyme world are very sensitive to and nervous about, because we put ourselves at risk doing what we do. And there have been cases of very well known Lyme practitioners who have given medical advise to those who are not their patients and then gotten in very big trouble for that.
To wrap up the conversation, I have one more question. Would you talk a little bit about the two standards of care? You're a member of ILADS, and they're one major Lyme organization, and the other is the ISDA. The two organizations are contesting each other. Could you just talk a little bit about that, what happens to patient care? Would you like to talk about where that controversy is headed?
The problem is, the ISDA board that has made the decision about their standards of care has been composed of people who have long been on record as being very against the idea of Lyme going into a chronic infection. And, they refuse to allow anybody beyond their committee, the committee that writes the standards of care, to disagree with their opinions. And of course, that's really not the way it should be. All opinions should be represented when these things are decided.
So, there are people who know a lot more about the politics of this than I do, and who are quite involved with all of this. But the IDSA, their whole approach really seems to overlook the fact that this is such a complex infection. They're turning a blind eye to the fact that this bacteria is so sophisticated, and has so many ways of avoiding.
It's amazing to me, how they're just turning a blind eye to that information. Because they're still maintaining that this is a very easy infection to treat, and you never need to treat for more than a month. They also think it's very hard to catch, anyway, but even once you do catch it, it's easy to get rid of.
Of course, my organization, ILADS, has the exact opposite view on the whole thing: that it's easy to catch, and hard to treat, and that many more people have it than we realize, and that once it becomes chronic, and disseminated, it's extremely difficult to treat, and it takes a long, long time.
And this is so easily shown in all of the many thousands of animal studies. And so many animal studies have been done, where the animals are treated by the standard amount of time recommended by the IDSA, and then when the animals are sacrificed or biopsied, the spirochetes are just all over their bodies still. Of course we can't do the same kinds of experiments on humans as we can on animals, so just because we don't have the human studies out there, the IDSA always wants to ignore all the many, many animal studies that there are, basically just saying, well, those aren't people.
But we know just from our experience, because those of us who spend all of our lives, all day and every day treating Lyme patients. We know what we see. And we see it.
I've had patients I've had to treat for four and five years before they get better. People who came to me, and they'd already been disabled for twenty years before they even started their treatment. It does pay to just keep plugging along, and keep treating because eventually people do get better. But you cannot have a set amount of time, and say 'this is it, your treatment's done, and you don't need any more antibiotics, that's it', I mean, that's craziness. How do you know that? Everybody's going to be different. Everybody comes to me with a different bacterial load.
People come to me who have been sick five, ten, twenty, thirty and forty years, even. I had a woman in her late seventies, and she's pretty darn sure she's been sick since she was seven years old, because ever since then, things have been going wrong. Once somebody's had it for a very, very long time it's all the harder to treat.
So, I just continue to treat according to what works and not according to the IDSA cookbook approach. That doesn't work. I know it doesn't. There are people who relapse very quickly, and are in worse shape than they ever were before they ever started treatment. So, the one month of doxycycline? You have a tick bite, you catch it right away, I'd say sure, I give a month of doxycycline, and mostly they're fine, although I must say that even those come back with a chronic presentation later. Even that isn't a guarantee, even if you get treated right away.
And too, because ticks are cesspools of infection. We don't have a clue how many different bacteria are in there that have been transmitted at the time of a bite. Now the chances, I imagine, statistically, that a person would get only one infection out of a tick bite is probably pretty small. They're probably going to get something else. Now, we have our little handful of co-infections that we're aware of, but there are undoubtedly many other infections that we don't even know about, that the tick harbors as well.
Thanks so much for your time, Ginger. Hopefully, we can talk again in the future, it's been really great to listen to what you have to say. And also, thank you for working on the front lines in San Francisco, in California where Lyme does exist.
Right. It sure does. I still am in touch with my Texas patients, I still see my patients from Texas, and people continue to get tick bites and bull's eye rashes in Texas. Right where, in the state where all the doctors claim there is no Lyme. Every infectious disease doctor you will talk to in central Texas will tell you there's absolutely no Lyme disease in Texas. No question about it.
And yet, I was seeing it all the time. It's pretty mind blowing, actually. I don't think I'll ever truly understand it.
Thank you so much.