In this show snippet Q&A from our interview ‘Is it Lyme Disease or an Autoimmune Condition?’ we welcome Dr. Julia Greenspan in this intriguing Q&A excerpt where we explore common Lyme symptoms and how to get tested for Lyme and other tick-borne diseases.
Listen to the full compelling interview at www.UnderstandingAutoimmune.com/Lyme for more about Lyme disease and how often it is misdiagnosed as an autoimmune condition.
Dr. Julia Greenspan has recovered from Lyme and one surprise she shares in the interview is, ‘you don’t have to see a tick on you or the circular, outwardly expanding rash common with infection to have contracted Lyme.’
SHARON: You have recovered from Lyme. What was it like to have Lyme? I read stories about it ─ sounds horrific!
DR. JULIA: I was born and raised in Oregon. I moved to New Hampshire when I was about thirty years old after I finished medical school. Growing up in Oregon, I really didn’t have the awareness. From medical school, I knew Lyme was an issue especially in the New England area but I didn’t understand how easy it was to get it.
I had indoor cats in the city while I was going to school. And when I moved to the country and lived on more acreage, I was like, go outside and be free!
But the cats brought in ticks. I’ve never ever seen a tick on me. I never pulled one out of my skin and the majority of the patients I’ve seen had the same exact story. Yet, over a progressive amount of years, I realized I was getting sicker and sicker and having these symptoms.
Just like a lot of us do, I would explain them away: Well, I’m a new mom. I just started a new business. I’m tired. And that’s why this hurts or that hurts.
I found out that I had contracted Lyme and another co-infection carried by ticks called “babesia.” Lyme isn’t the only infection that ticks carry.
Now, at the time, I was practicing as a naturopathic doctor; I still am. I was actually focusing in on the treatment of tick-borne disease because where I lived was probably one of the most infected areas in the country and there were very few doctors who treated it.
I was already doing that as a specialty but I really didn’t have the inner awareness ─ kind of “Doctor, heal thyself.” And it dawned on me, one day, after listening to certain symptoms patients were bringing up over and over again ─ oh my gosh!
It just sank in. It just finally clumped me over the head like a big piece of concrete after all this time of just thinking that I just had X, Y, and Z going on and not related to Lyme.
So I tested myself. Sure enough, there it was. And I got started on treatment. It took about two years for me to recover because it has probably been several years that I’ve had it and I had no idea.
SHARON: Wow! What are some of the symptoms? You said fatigue, and that’s a common one we can check off on most autoimmune.
DR. JULIA: For me, because of the co-infection piece, ticks will feed off of other animals and because the environment is so diverse with microbes in all places that when they’re feeding off of another animal which is how they live ─ they thrive off of a blood meal ─ they take in multiple forms of infections, mostly microbes, at one time and they can live in the stomach of the tick.
It might have been one tick that got me; it might have been many bites that I didn’t catch. But I ended up having Lyme and Babesia.
Lyme-like symptoms are going to be more joint pain and it’s going to be joint pain that’s roaming. It will move from one knee to the next depending on the time of day. On Monday, it would be on the right knee and on the left knee on Wednesday for no reason.
SHARON: How frustrating! I would be like, did I bang my knee? How strange that it roams!
DR. JULIA: Yes. And it will roam not just between the knees but the shoulder, the neck, your wrists, elbows ─ pick any joint space. And so, you have this roaming joint pain. A lot of people have a lot of foot pain and that was a symptom for me. So getting out of bed, my feet would hurt terribly by just touching the floor and having my feet land on the floor.
Headaches, dizziness, trouble with vision, light sensitivity ─ I would have ringing in my ears, focus and concentration issues so a lot of brain fog, having a hard time coming up with words, having a hard time multitasking which I was very used to doing. And so, when that started to fade and be more difficult, that was very concerning to me especially having a job in medicine and treating people.
Those were among some of the main symptoms. The Babesia has more of the foot pain, a lot of night sweats, a lot of trouble breathing. I had a lot of shortness of breath and heart palpitations that would come and go.
But the reason why this is sneaky and that you can kind of explain stuff away is that ─ in my case and in a lot of patients’ cases ─ it will exacerbate. It will have a flare, and then it will go away. And you think, oh, I think I’m fine now; maybe I shouldn’t push myself too hard. And then, it will come back up again in a few weeks. And, sometimes, it’s more frequent than that for a lot of patients.
These are some of the examples of some of the things that were happening to me at the time.
SHARON: Most of those you listed are very common in autoimmune: brain fog, pain. I can imagine how hard it is for a doctor to diagnose especially, let’s say if I contracted it in New Hampshire and came back here to Oregon. I’m thinking that it would not be at the top of their list to check off whereas in New Hampshire, maybe it’s becoming more common to check into.
Is it difficult to get diagnosed once we go, “Hmm, I’m checking off a lot of those things Dr. Julie had just mentioned”?
DR. JULIA: It is. It’s difficult to get diagnosed because there are different belief systems about what a true Lyme case is. There’s the political aspect of this and different ways of viewing Lyme and tick-borne disease in regard to what it actually means for a test to be positive or not and what Lyme needs to look like.
So if somebody comes into the office, doctors will have a certain belief like “Oh, your knee is now swollen and we didn’t see a tick on you and you’re not walking in with a tick. It can’t be Lyme. It’s probably a spider bite.”
And it doesn’t have to mean that you have to be on the West Coast where you wouldn’t think there’s a lot of Lyme disease. But there actually is quite a bit on the West Coast, unfortunately, and it’s growing.
But as far as being in the New England area where it’s more well known, it is still very difficult for people to get an accurate diagnosis and to be heard and listened to because there are different criteria that the CDC has created.
But what I find, and this is just my clinical opinion. This is just one practitioner’s opinion. What the CDC has mandated as what is considered a Lyme case based on a lab doesn’t match clinically with what’s happening in people’s lives and what’s happening to people physically.
A Lyme patient is going to have symptoms in many different areas of their body but, a lot of times, people will come in with these illnesses and complaints. Again, as I’ve said, I never saw a tick on me so they wouldn’t even know how to relate it to Lyme. They get funneled into seeing a rheumatologist or a neurologist or a specialty because of the symptoms and symptom management.
It is very difficult for patients to get a Lyme test and to have it taken seriously even here in New England where it’s an epidemic.
SHARON: Wow! Is it just a United States problem? We have listeners all over the world. Is it worldwide?
DR. JULIA: It is [worldwide]. Give or take, new strains are being discovered all the time. But based on my research and where things stand right now, there are between three hundred and four hundred strains that have been identified worldwide. And there are strains of Borrelia and Babesia so if we just talk about Lyme specifically, there are strains that are more specific to Europe or to China or to Australia, and there are strains that are more specific to the United States.
SHARON: Thank you, Dr. Julia! So helpful. Everyone, that’s Dr. Julia Greenspan sharing common symptoms and diagnosis of Lyme and tick-borne disease. Find the complete audio and video of this interview at www.understandingautoimmune.com/lyme
Dr. Julia Greenspan is a naturopathic doctor and author of the book “Rising Above Lyme Disease.” Dr. Greenspan is a Lyme Literate Doctor with a majority of her patients having some form of the tick-borne disease. She has been listed in the Top Doctor’s Reader’s Poll with New Hampshire Magazine several times and interviewed as an expert on tick-borne illnesses on TV, radio, podcasts and in print media. Dr. Greenspan’s website is www.greenhousemedicine.com.
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