Introduction to Lyme Symptoms

Welcome to another episode of the Healing Lyme Summit. I'm your host, Dr. Myriah Hinchey. Today we're going to talk about the symptoms of Lyme disease.

I think that this is easily one of the top five most important talks of this summit, because the Lyme is a clinical diagnosis. A clinical diagnosis is compiled of findings from a physical exam, along with symptoms that are reported by the patient or their complaints, and any other laboratory finding.

So Lyme disease infects every cell of the body, and therefore it can affect every cell, organ and organ system in the body. And this leads to a multi systemic presentation of symptoms.

And it can be very confusing. So one of the hallmarks is that these symptoms are often multi systemic and migratory in fashion. And they're going to differ from patient to patient.

Because these are infections that actually like to prey on the weaknesses of the body. So whether they're previous injury or genetic you're going to have the infections kind of go there like a magnet.

To complicate matters, we have co-infections that cause their own symptoms and actually lives synergistically with Lyme disease. So the more infections you have, the worse your symptoms can be.

And a lot of these co-infections have their own hallmark or telltale symptoms that can help us to kind of like tease them apart and figure out what's causing what.

It's very important to know what co-infections are there, because a lot of them are not treated with the same medications or antibiotics that you need to treat Lyme disease.

And a lot of times if you can't treat them all together, there can be a priority or an order in which you would want to approach treatment. So here to help us navigate through all of this information is osteopathic physician Jody Greenfield.

Dr. Greenfield is board certified in internal medicine, and he is a fellow of the American College of Physicians. He's been in practice for over 30 years now, and he focuses on the personalized care of patients with complex illness.

Welcome, Dr. Greenfield. Tell our listeners a little bit more about yourself and how you came to specialize in treating complex illnesses. Yes. Hi. Thank you again.

well, as I said before, you gave me a very nice introduction. what showed you what sort of internal medicine?

Dr. Greenfieldu2019s Lyme Journey

when we did primary care medicine until I fell ill with, Lyme disease myself, actually, I had, many unexplained symptoms and as doctors are not treated very well, and, like a typical patient, I went doctor to doctor, the doctor till I finally did a lot of research on my own and figured out what I had to answer.

I did have Lyme disease. I wound up finding a specialist who treated patients with Lyme disease. And luckily, I got better. And I ended up, working with that doctor in his office.

so I learned much about it and did a lot of research into it. And now I treat patients with that. That's awesome. I'm so happy that you found someone that helped you.

And not only that, but now this is like what you've dedicated your career to, and you're able to help so many other people. Yes, yes. Enjoy doing it. I see many, many patients with very complex medical problems.

some of them are actually diagnosed with other things because Lyme disease can mimic, many other diseases. So, and they were treated for these other diseases and didn't get well.

And turns out it took a more thorough history, and did more thorough lab testing. Turns out many of them had Lyme disease and, co-infections. And then of treating them, unfortunately, it's usually a very long course, but most of them improve significantly is have to stick with the program.

That's very important. And I think you actually you just gave out one of the, one of the very telltale symptoms, right, of Lyme disease. One of the hallmarks, right, is that it's has the symptoms.

And then you take a drug that's supposed to manage it and it doesn't respond at all. So oftentimes having a non response to a medication, is is a hallmark sign, right.

Yes. Very true. And many patients they used to call syphilis the great imitator that they call Lyme disease the great imitator. I've had many patients that were told they had.

And that's the myalgia syndrome. Even Alzheimer's disease, ALS, maternal arthritis, hypothyroidism, any of these things, seem like there's something else, but they were treated.

These other problems, and the patients did not improve. So end up again, doing more thorough history taking, what? They're lab testing and turns as many of them had these tick borne diseases and wound up treating them, and they improved significantly or even became many of them can become asymptomatic.

So it's very interesting, very important to be very thorough with your evaluations. Absolutely. So because we have Lyme disease and the symptoms of Lyme disease, really mimicking and overlapping with the symptoms of numerous other diseases, how do you differentiate Lyme from other conditions?

You know, putting the testing aside, right. Because we know that testing can be problematic, especially if you're not using, a specialty lab, but from a clinical diagnosis.

How do you differentiate between Lyme and other conditions? Well, there's certain things you could see. Let's see with Lyme compared to some other things.

Let's say someone has arthritis. Usually it's just let's say it's their wrist, right. They just feel pain in the wrist all the time and that's it. But many times patients with Lyme disease, we they can have what we call migratory arthritis.

One day they could have pain in the wrist. You days later in their ankles. A few days later the elbows should move around. So that's one of the ways of telling, Lyme disease compared to, say, arthritis, many patient Lyme disease.

Also, they can have their pain that also could be migratory traveling through it out various parts of their body and also, patients with Lyme disease, many times multiple parts of their body is affected.

They can have arthritis plus palpitations plus memory loss, plus psychological, symptoms. So there can be many symptoms in the line. Patient typically affects, patient's whole body in many, many areas.

And they end up going specialist to specialist for each particular part of the body. But they haven't done you and they really puts everything together and try to figure out possibly when a disease is causing these multiple problems in various parts of their body.

Yeah, it's funny I say that to patients a lot. I'm like, what do you think makes more sense just from a common sense standpoint? Do you think that you simultaneously have something going on, like a different thing going on with almost every system of your body, or even for systems of your body?

Clinical Clues and Common Symptoms

Or do you think that potentially you could have one thing going on that's affecting every system of your body? and a lot of times, you know, patients take a step back and they're like, oh, yeah, that makes sense.

You know? Yes, yes. We find that very true. Yeah. Exactly. Yeah. So how how do you what's your approach to diagnosing Lyme disease? Well, it's very, very important to take a thorough history, the patient have an environment where they could have got it.

I practiced in Florida. Many, patients are told from the doctors there's no Lyme disease in Florida. However, I've had a few patients that were a veterinary, technicians or dog groomers.

they told me they had, dogs from all over the world, basically, and the ticks would kill off of the animals onto their body. So that's one way they got it.

I had two patients that actually got, mulched from their home improvement store, was in his home, and then you end up having tick infestation in the home.

So when he got Lyme from that, actually. So there's many ways that someone could get even those technically may not be a lot of Lyme disease in that particular area.

There's many ways of someone still getting it. So very important to take a very thorough history. also do testing for that patients at specialty labs, the regular labs that, the commonly used labs, many times can miss, Lyme disease because they don't check as many school bands.

and there's, there are testing done from these specialty labs. They look for these, labs, like there's a band called, band 31. And this band was used when the vaccine was manufactured.

And most of the commonly used labs don't even test this. And that band is called the lab specific band. So that someone has that, that means they're exposed to lead and nothing else.

So the other bands that the regular labs use test for bands which could be Lyme, could be bacteria could be other viruses, like if you use a lab that checks the more of these we put like specific bands, that helps with the diagnosis as well.

Yeah. So what? Besides the hallmark symptoms, what are the most common symptoms of Lyme disease? Well, there's many symptoms people can have. Like I said earlier, it can affect the whole body.

many times people get as a migratory joint pain, get joint swelling. Some of these people have memory loss, reduced concentration. Sometimes they work reversals.

They want to say one word and the wrong word comes in front of that one. I've had many patients that have stuttering. Well, just the wrong word comes out.

I've had some young patients even say 19 year olds with memory loss. Now 19, you shouldn't have memory loss if you have an elderly person, it may not be so unusual, but if a very young person with memory loss thinking, concentration problems, joint pains, they shouldn't be happening in the young person says, or the clue that someone should be thinking about Lyme disease.

Another thing patients with Lyme have, they can have depression or anxiety. but it doesn't respond to the usual medications that any patient said. So they went to the psychiatrist, they tried many different medicines.

Nothing works. So that's another clue to think about Lyme disease. some of the patients can have light and sound sensitivity. some patients can have carpal tunnel syndrome.

I've had many patients with eye problems with eye floaters, rapid change in their perception for their eyeglasses. In 50 years, these people have ringing in the ears.

Tonight is a big thing. Many patients have very bad fatigue. it doesn't feel like the usual fatigue from not sleeping enough. They just feel really exhausted and wiped out and, but, how much sleep they get, they feel like they just they're still exhausted.

So those are some of the more common things I would say. you see what the patients. Yeah. And then how would you compare those two symptoms, let's say, of Bartonella?

very good. Well, many times the symptoms can overlap and it can be difficult to figure out which is which just clinically. However, there are some things you see more commonly with Bartonella patients compared to the patients with Lyme disease.

many patients with Bartonella, their neurologic symptoms are really out of proportion with their other symptoms. They can have much more numbness, pain, twitching.

you see a lot of that with patients with Bartonella symptoms. They can have even more light and sound sensitivity. in addition, some patients with Bartonella have an unusual rash.

It looks like we go straight. Bartonella tracks is lines on the skin. said to be kind of unusual with compared to other diseases, which you see with Bartonella.

Bartonella, you could also have a lot of GI symptoms like GI flux, abdominal pain compared to some other diseases. So we put all these things together, that can help differentiate between, Bartonella and Lyme disease.

And what about the BRCA. boobies? Here is another important one. the patients can get them a tick bite, with the desire typically, patients could have even more severe fatigue and red line disease.

but the desire is a red blood cell parasite that sucks the oxygen out. Basically, the red blood cells. So patients can get really ticked, especially if the exercise many of these patients with just a small amount of exercise can feel wiped out that day or the next day.

many patients this year also have night sweats.

Bartonella and Babesia Differences

Now you can get night sweats with line, but they're typically even more severe. It's easier. And I mentioned earlier that it's a red blood cell parasite sucking the oxygen out.

So many times these patients can feel shortness of breath or something we call air. even just talking to someone, some of these people just feel like they can't get enough air.

I've had a number of patients tell me they have non automatic breathing. They almost feel like they have to force themselves to breathe yet another area.

So this is some that big, I get cold like symptoms of the year compared to some other diseases. Yeah. And then if you have all three the great, you know, three BS, you know, then it's like having all of these symptoms at once and they're all usually much more severe.

Yes, it can be much more severe. And you, you treat which every that complex the more severe symptoms. Right. The treating that one first and have it try to overlap with the other diseases as well.

But typically I would go into treating the patients with the most severe symptoms. Try to attack that first basically. Yeah. So why do you think it's so hard to diagnose Lyme disease?

Well, unfortunately, the lab testing is not super accurate. As I alluded to earlier, there's many bands which are not that many, but there's some bands which are not tested by the typical labs.

there is the typical testing is not very sensitive, which means it doesn't pick up the, abnormalities in the blood. It's usually compared to some of the specialty laboratories.

the best test for Lyme is actually if someone actually, you see the bullseye rash on somebody that's actually better than the blood test target. The bullseye rash is only seen maybe burning until you hit 20% to 70% of red.

Typically you see about 50% of people don't get the rash, and the rash doesn't have to look like a bullseye, although it is solid spotted, so it doesn't always look like the typical rash in patients with Lyme disease.

So there's nothing always the same with it. So it makes it very challenging. So again, make that really, really good history. Sorry. No I was just going to say and I think, you know, you made a very, very good point for the listeners.

If you see an M rash that is diagnostic of Lyme disease, it does not matter what anything else says. An M rash is diagnostic of Lyme. So, you know, if you're being told you don't have it because your test is negative, it always goes back to if you are lucky enough to see that rash, that is 100% diagnostic.

Yes. And I just want to make a note that I say another point about the rash. I've had many patients also that went to the doctor at a circular. Estimates were told that ringworm, however, they were given treatments for the ringworm.

The cream didn't go away. And these patients also had multiple other symptoms as well that they tell their doctor about. And deficit, you know, to worry about rates, ringworm.

So again, very important to take everything into account if you think you're not getting better, and something's not right should investigate further.

Yeah, absolutely. Go with your gut instinct. It's funny you're making me think of. I had a patient who was on vacation in Florida, and she had an M rash, and it was.

It was actually, like hot red. You know, it was about this big. It was right under her bra, and she was having dizziness. She was having headaches. She was having light sensitivity.

And the doctor at the walk in clinic said, you know, well, you know, you obviously have some sort of, insect bite, but it's definitely not a tick bite because it doesn't it's not a bullseye.

And she's like, but, you know, I have all of these symptoms.

Why Lyme Is Hard to Diagnose

And he was like, well, you know, maybe you're tired from, like completely dismissed at and, I mean, it's just, you know, it's one of those things that's so disheartening because it's like, okay, like if the rash isn't there and you get misdiagnosed and whatever, you know, just out of, like, not being educated.

But then it's like here you have the rash, you have the symptoms, you went to the doctor and you're still being told, well, it's anything but Lyme. You know?

Right. since if you would call that an elderly and that Lyme disease. So it's important to still investigate further if you think something's not right with your body.

Yeah. Okay. So how do these symptoms change over time, like walk us through kind of like an acute presentation all the way down to, you know, a chronic infection that someone may have had for decades?

Well, it's a very good question. typically, the longer it's been in someone, the worst symptoms they'll have, and the harder it is to treat, many times, like a tick.

Bite them. Those symptoms actually, they could epicenters days, months or even years later, so it could take a long time to get so many times people could get symptoms right away.

Typically, someone will have we called flu like symptoms, like fever, chills, headache, stiff neck. So if someone has those, you know, right away, it should go to a doctor right away and have it checked up to see if it is Lyme disease.

Or just like symptoms could be the flu. So we should evaluate, try to figure out what it is. But over time many times these symptoms come and go. Like some people those symptoms do not go away.

And over time it'll come back again or they'll wait and come back again. But when it comes back again, typically they get more and more symptoms, more and more tense.

Some patients get, one more joint pains. Over time, more and more brain fog, memory loss thinking, concentration problems, their pain. insomnia is a big something as well.

So these patients get more and more insomnia as well. So symptoms typically get more and more and more and stronger and stronger and stronger over time.

So as it kind of ravages more of the systems of the body, you end up with more symptoms in more systems and a more severe state. Yes. And the longer it's in someone, typically the longer is for them to get better and they're getting treated.

So again, think something's not right. It's important to address it and try to get it treated as soon as possible. So aside from how long the infection has been present for, what else do you think accounts for like the differences in presentation?

So like I've had patients that have had maybe like 2 or 3 symptoms, they're not the majority, but you know, it's happened and then you have other patients where literally it looks like multi-system failure.

What do you think is behind that? Good question. I'd say nobody knows for sure. But there's some possibilities. some say it could be partially a model.

Let's say men versus women. Typically women are more, affected by Lyme compared to men typically have more symptoms or stronger symptoms. it's genetic.

Maybe there's genetic differences of people. Why some patients, would have what symptoms compared to other symptoms. Another thing is if someone has some medical conditions, which we can.

Your immune system, then you can make somebody have more symptoms and stronger symptoms as well. So those are some things I would say that could cause someone to have, more symptoms or some differences.

Differences in symptoms. Right. So there's different species of Lyme, right. Like we have this group that causes Lyme, and then we have another group that causes like tick borne relapsing fever.

Right. So just in those two different categories can you talk about the little bit of difference in the way traditional Lyme disease versus tick borne relapsing fever might present.

And somebody typically pretty similar. And sometimes that's what one of the things that makes it difficult some doctors do check for Lyme disease. And it comes back negative.

Have it. The patient could have tickborne relapsing fever, which can have many overlapping symptoms. and they may not be diagnosed with Lyme disease because they're not checked for that as most doctors wind up not checking.

But that's the nurse educated in it. however, tick-borne relapsing fever, the word fever isn't there. So those patients can have fever. compared to the patients with traditional Borrelia or lenses, sometimes every few days they'll have a temperature spike.

So that's one of the ways to tell the difference. Potentially, tick relapsing fever compared to, say, regular Lyme disease.

Symptom Tracking and Treatment Progress

Yeah. And are there any hallmark symptoms that, you know, based on the different species and what it matter when you're treating somebody for Lyme, whether, you know, if it's Borelli is Borrelia, right.

Like, does it matter? Yeah. I haven't seen a difference, actually, in terms of symptoms or treatment, these days, say some strains and work from America, some are from Europe.

However, there's so much traveling that's going on. there's species all over the world now. and typically where this species is, it seems like the symptoms can overlap and be very similar treatments, pretty much the same.

So I'd say typically not much different section what I see. Okay. Well, Doctor Greenfield, I want to give you the opportunity to let our listeners know where and how they can find you.

And if you have any exciting events coming up that you'd like to share. Okay. in Florida and right now I'm doing, consults via telemedicine, my website, my office is get well medical care.com, and I try, having some, useful information on Instagram.

And the handle is j the village name Greenfield Geo. So Jake midfielder on Instagram. Also on Facebook. get well medical care South Florida. I recently done some presentations and sabbatical conferences, but nothing coming up yet.

But it will be in the future. Wonderful. So if you are a summit purchaser, stay here because we're going to dive deeper into this talk about Lyme disease and clinical diagnosis.

And if you're not, click that button down there so you can come along with us okay. So let's jump back in. how does tracking of symptoms aid in both your treatment but also knowing like when you're pretty close to having this infection resolved?

Well, that's a really great question. Actually. before my first visit, I had patients fill out a very long questionnaire. potential Lyme symptoms. do you have it mild, moderate or severe?

is it frequent or infrequent, etc.. and that's prior to the first vision. And obviously that first visit, we talk about it at each visit. When the patients come back, I compare their symptoms at their followup visit compared to their prior visit as well as compared to their initial visit.

Many times, patients will come back for their followup visit. Say that no change. However, when I go through each of the questions, oh that's better, oh that's better too.

So it's very important to use these symptom trackers to see if there's any change in symptoms. And hopefully the goal is to have whatever they came in with and not having those symptoms anymore.

After the treatment. Yeah, I find it so helpful. I can't tell you how many times I've had a patient come in and say, you know, I'm not I'm not feeling any better.

And then, like you said, you go through their symptoms and they're like, oh my God, I forgot I was even having that. It's like, yeah, you know. So, I think that seeing the symptoms unraveling and improve in their severity and frequency makes such a huge difference.

You know, I have patients come in who are on anti-inflammatories or insides. Right. And they're taking them almost every single day. And their pain level is still, you know, a ten out of ten.

And then it's like, okay. They are like, well, you know, my pain's down to like a seven or an eight, but I'm no longer taking Advil every day, you know?

And so it's like we have to look at all of these other things. It's like, wow, not only did you have a reduction, but you aren't taking, you know, something to control it, which you had been taken for months, if not years.

and it's funny because if a patient's having a bad day, nothing's better. Things are often, you know, worse is what they'll just generally tell you. And if they're having a good day, then it's like, oh, I feel good, you know?

So I think having even though it's subjective because they're reporting how they're feeling over time, when you have those side by side comparisons, like you're speaking of now, that actually becomes like objective information that you can compare and use to justify your treatment and prove that it's actually working.

So I think that tracking is so important. Especially because there's no way to test the Lyme disease to see if it's gone away or better. So that's I'd say, the most important thing, to check to see if somebody is getting better or if they're not getting better for some reason that you have to evaluate, do you need to change the treatment?

And this is a way of telling, should you be changing the treatment or not? Yeah. You just maybe think of a funny point too. So I've had Lyme patients where they've retested, you know, they just want to retest.

They want to do the test again. And, you know, most of these tests that we're using are indirect tests. So they're measuring the immune system's response.

And I've had patients come back and be like, you've made my Lyme disease worse.

Key Takeaways and Finding Care

And I'm like, what? Why? How? You said you were feeling better. Well I am feeling better. But you know, my my antibody levels on my Gen X test. You know, I only had like an IND before.

And now I have two pluses. And it's like, we've enhanced your immune response, you know, which is a good thing. It doesn't mean like your load of infection got bigger.

So, you know, to your point, there's there's really no testing that you can do, you know, to show that the infection is resolving. I mean, other than looking at like CRP, which is an inflammatory marker or high sensitivity CRP, you know, or some of these immune markers, if we've been tracking those, you know, they can show an improvement.

But yeah, it's mostly clinical picture, right? Yes. And like I said, as well as the Lyme bacteria can, suppress the immune system. So some patients will look like they don't have any Lyme antibodies are very few.

And they said that previous doctors said that they don't have it listed on antibodies. However, they may not be educated enough in that, excuse me, the Lyme bacteria can suppress the immune system.

And as you said, if patients were treated, humans, that immune systems are suppressed. So so they're making all these antibodies, which they would have had.

But now that that is suppressed, their immune system. So now they can show that they have these antibodies. Right. So what do you think are the most important things for the listeners to know about Lyme disease?

From a diagnosis standpoint? Let's say the most important things I would say very important, if they have the bullseye rash or a circular rash, especially if they were camping and if they had flu symptoms.

Well, with that, they sounds like they must most likely have Lyme disease, and they should seek out a health care practitioner that's willing to treat them for that and or at least evaluate that is a possibility.

So I'd say that's one of the most important things. And I would say another important thing is if someone has sudden onset psychiatric symptoms as an adult with no obvious reason, nothing bad happened in their life.

and they tried many different, but their doctor, many different, medications for the psychiatric symptoms. none of them get a good response. And another thing to look at is, Lyme disease for sure.

and actually, the most important thing is to know your body. Don't give up, especially if you have symptoms in many different parts of the body. Joint pains, palpitations, severe fatigue, night sweats, memory loss.

You have many symptoms. Many parts of the body. Yeah. Don't give up. make sure you, seek out someone that can help you out. try to get better. Absolutely.

And I think, you know, going to ilads.org. They have a wealth of information. they can help you to find a Lyme literate practitioner in your area. And, you know, I think one of the most important things is to get with a physician that knows what they're doing that is Lyme literate and knows how to diagnose and treat.

Yes. And occasionally ILADS some, webinars for patients as well. and as you said, they have a section on that where you could seek out, Lyme literate doctor in your area, to try to find someone to address your concerns.

Yeah. So anything else you would like to share with our listeners before we conclude our interview? All right. Thank you, everybody, for listening. the most important thing is, again, know your body and get checked up.

Something is not right. and again, I see patients in Florida GetWellMedicalCare.com. And you have this phone if you're interested in (561) 113-2869. And I thank everybody for listening.

Thank you, Dr. Greenfield. And thank you all for joining us. I hope that this information was helpful and helps you on your journey to Healing Lyme disease. Take care.

Jody Greenfield, DO, FACP

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