1) Know Your Symptoms

Summary

You know your body best when feeling unwell. Keep advocating for yourself to find practitioners that can truly help you. Looking outside of the medical profession into alternative healing may give you the answer you truly need.

Tenesha Wards is a functional medicine doctor. She personally healed from Lyme disease, the Epstein Bar virus, and Hashimoto. From her training with top doctors in the U.S. and her personal experience, she treats her patients holistically.

Resources

• YourTruthRevealed.com – Newsletter and Previous Seasons
• YourTruthRevealed.com/Infinity – Free eBook and Webinar by Tenesha
• Please subscribe and rate the podcast

Transcript

[00:00:00] Erika:

I share with you the power of self-knowledge, exploring your hidden physical and mental health potential. I'm eager to share how I'm healing from chronic Lyme disease as I interview helping professionals. I share my journey because now more than ever collectively, we are suffering from chronic inflammation, fatigue, and anxiety. I provide reasons why and how to thrive once again. This episode marks the beginning when Dr. Tanesha Wards asks me questions about my persistent and mysterious symptoms. Listen, as she asks me questions about my symptoms that finally lead to an accurate diagnosis and effective treatment.

[00:00:54] Tenesha:

“I think telling your story, very powerful and thank you for sharing it, can help people get a diagnosis sooner and get help sooner versus suffering for decades. And if we can do that for one person, I think it's worth telling your story a hundred times. Erika, your journey has been long, and your story goes back deep. Why don't you start from the beginning and kind of tell us what your symptoms were, what drug you in the doctor's offices to begin with?

[00:01:48] Erika:

From 2009 to about 2017, I was super busy with my private practice as a counselor, teaching meditation and yoga. Doing events and workshops. I did a business mindfulness training for executives and juggling basically two businesses at the same time.

[00:02:08] Erika:

Raising a pre-teen, and boom, I just started spiraling down and I got to the point where I couldn't sleep. and that was, like so uncomfortable and I didn't understand why I was having so much difficulty. It went on for about six months. I just kept saying to my husband, I don't feel right. I don't feel right. I can't even function, but don't even want to leave the house. And that's not my personality. I like being out and doing things, but I didn't know how I was going feel. It was awful.

[00:02:47] Tenesha:

I would call this section in your life kind of a busy mom syndrome section, right? Running a practice, a second business, you know, pre-teen, which should be manageable, right? Like if we should ourselves, right? That should be manageable to an extent. But you felt something was not right and it wasn't manageable.

[00:03:08] Erika:

No. And it kept getting worse and worse and worse. Eventually, it was Thanksgiving of 2017, and I remember laying there and trying to go to sleep and I said to my husband, David, I cannot do this one more night. I'm just laying here feeling agitated, feeling sick, and not getting any rest. I know that if you don't get enough sleep, you start to hallucinate, which I wasn't quite yet, but I was on the verge of just like, what is reality? And I asked him, I begged him to take me to the hospital and he wouldn't. And I think there was some denial there and not wanting it to be as bad as it really was. And I called my mom, she took me straight to the hospital. And they said I had an anxiety disorder and insomnia.

[00:03:55] Tenesha:

They might not have been wrong. You hit a place of delirium when you're not sleeping. Think of that movie Fight Club. Like you hit a place of what's reality and what's not. I hear that a lot from my patients with specifically with Lyme and mold. When they can't sleep, they get into a twilight state. Yes. During your day sometimes, and that causes anxiety. Then you get into a feedback loop of what's real, what's not. What am I saying? What am I doing? That's a whole other syndrome all in itself.

[00:04:21] Erika:

I agree. I remember a social worker at the hospital highly encouraged that I go to outpatient. Which was kind of funny for me because being a counselor and on the other side of all this. The reason why I chose to go to outpatient was they had a nurse and a doctor I wanted to be monitored on the medication.

[00:04:44] Tenesha: And being in the field, you know too much.

[00:04:47] Erika: Right, it was hard. I have mental health issues in my family. It's all in the genes.

Tenesha: It made perfect sense getting a diagnosis of anxiety. Well, you didn't question it.

[00:04:56] Erika: No I didn't.

[00:05:00] Tenesha: And at that point they thought you were on staff?

[00:05:00] Erika: Yes. I had a lot of empathy for the guy who was leading us in group because he was young and beginning his internship. I have no idea why I did this, but I raised my hand and said, “Can I lead everybody through meditation?”

Tenesha: I love it. We can't help ourselves, can we?

[00:05:16] Erika: And then he let me. He said, “Well that was really good. When's the last time you saw a client?” And I said about two weeks ago. And he just was shocked. And yeah, several of the patients thought that I was staff.

[00:05:30] Tenesha: This is why I love your story, and I think it's so powerful because you have been on both sides of this. You've been a practitioner and you've been a patient, you can understand both sides. You’ve seen the holes in the system that we’ll get to and talk about at some point in our journey. How long did the outpatient psychiatric care go on? Did you feel like that pulled you out of something? What were the next steps?

[00:05:52] Erika:

Yeah. I think it really did. I was there for maybe a week. I was sleeping eleven hours at night. We went to London in July (2018) and I did pretty good. But I wouldn't say that I was healthy, I still felt like there was something behind the scenes that wasn’t right.

[00:06:13] Tenesha: But you were functional.

Erika: I was functioning, yeah.

Tenesha: Yeah. And know we know that that was a flare up, going up and down. You were probably in a flare and your body was able to recover some to be functional. But I tell people this all the time, you're the only one in your body. If you know something's not right, it's probably not.

[00:06:32] Tenesha: Right. Hanging onto that and knowing, but also what's the alternative? . You have to t trudge forward.

[00:06:38] Erika: I agree. I purposely went to an integrative psychiatrist who I actually interviewed on this podcast before. And his name is Dr. Brent Turnipseed.  

Tenesha: What makes a psychiatrist an integrative psychiatrist?

Erika: He educated me about supplements. He was the one that said, “We really need to get you a physical, we need to make sure that there's no underlying illness. But here's the catcher, we didn't catch anything.

[00:07:08] Tenesha: They're not just looking at it from a western medicine scope. He's looking at mind, body, and at lifestyle. That's really great. But he was onto something, he knew something was causing these episodes, these issues, your inability to function.

[00:07:21] Erika: Yes. And if we look at my symptoms at that time: when I would lay down, I would feel this stinging go from the base of my spine up to my head, and it felt like it was vibrating. I believe now maybe that was my nervous system.

Tenesha: Stimulated or overstimulated.

Erika: Yeah, and my knees felt weird like jelly. I couldn't trust that they were going to function right.

[00:07:44] Tenesha: Kind of like if you got off a really crazy roller coaster.

Erika: Yes.

Tenesha: I've heard that before. I've had multiple patients say I feel like my knees are going to give out. That would've been a red flag for me at the time that it could be Lyme disease. Spoiler alert. I had something very similar. We're going to talk about it at some point, that we've both had similar paths to an extent with our diagnoses. Also, the symptoms that move and attack different organ systems, including the nervous system and the digestive system. This is another big red flag for Lyme, it doesn't look the same in any patient. It mimics other things and looks like ten different things at once. It's a hard thing to diagnose because of that. But the knees would've tipped me off at the time, but to probably most practitioners, well that's weird. Like what's going on with your musculature?

Tenesha: That's how you spent the last couple years. Weird symptoms and working with a psychiatrist who knew there was something but didn't find it. You were able to get your practice back up and going after that stent.  

[00:08:40] Erika:  I think I took one month off total from seeing clients.

[00:08:46] Tenesha: I think that speaks to your sheer will and tenacity as a person to heal, to be better, and to be normal. A lot of people don't do that when they feel so bad or they can't do that.

[00:09:00] Erika:  Yes and at that time I did want to look at my neurotransmitters. I took (the information) to my integrative psychiatrist and said, I think I'm on the wrong med. I need to be on this med. And it actually ended up being a better choice.

[00:09:12] Tenesha:

Again, relying on yourself and your own clinical experience and knowing your body. This reminds me of a quote that I put in my book by Beyonce that says, “I've learned that it is no one else's job to take care of me but me.”

[00:09:25] Tenesha:

I mean, we have to be our own advocates. Because doctors are human and the more specialized they are, they’re not looking at the whole body. I had a mentor say, “The more specialized a practitioner, the dumber they get because they’re looking through a smaller scope. But you knew in your body this isn't right either.

[00:09:46] Erika:

Right. And I guess because I've been a practitioner for so long, I don't expect somebody else to have all the answers. I do choose the people that I wanna help me very carefully, but I don't have . . . what is the white coat syndrome?

Tenesha: God complex.

Erika: Yeah. None of that.

[00:10:04] Tenesha: I think it's worth pointing out you, somebody who's educated and a practitioner, and how hard your journey has been to get to the root, to get to the cause. And you're above average in education, in medical knowledge, probably also medical intuition, knowing you. Imagine what people that aren't in the field have gone through. It's heartbreaking. It's hard to watch. I've cried with so many patients on their intake listening to this.

[00:10:33] Erika:

One of the major motivations for doing the podcast, and I'm writing a book about it also, is to help people understand that there are options. I've been through all this. I want other people to benefit from it, not just me. If I learn something, I'm gonna share it quickly even if people don't want to hear it.

[00:10:52] Tenesha: We absolutely share that mission, and I am in awe of you for your vulnerability and using this platform to do it.

Erika:  It’s a little scary.

Tenesha: Absolutely, absolutely. Vulnerability is right? But again, people need to hear it. Why the suffering if we can't pay it forward and help somebody? It can't be pointless.

[00:11:14] Erika:

And that's a motivator for me. I've always wanted to get better and I'm still on that journey. It's because of people like you that have gone through something similar and made that your mission to help other people. I just see the collective that we keep advancing. And I think that's the whole point.

Tenesha: Take us up to the moment before Covid. I think we can all remember like January, February, and March 2020. And it was still a lot of unknowns with Covid. We didn't know what the world was doing. And everybody's in fight or flight. We're losing people that we know. To not feel well through that, I can't imagine. Kind of walk us through that to now.

[00:12:22] Erika:

Yeah, around that time, I was sick for a few months and one day I told my husband, “I know this crappy feeling. I can remember when I was twelve when I had mano. And again, it wasn't my doctors coming to these conclusions, I had to rely on myself. And sure enough, I tested positive for mono. It seemed like I didn't really recover. And in September of 2020, we moved into our house on an acre and a half of which we're at now. I Love this place and slowing everything down. That December, I remember wrapping my dad's present for Christmas Eve and I couldn't breathe. I was gasping for breath. David was there with me, I said, “I need to go to the hospital. And this time you're taking me. We're not gonna go through what we've been through before. I started having a panic attack on the way over there because I couldn't breathe. And that's really scary. I get there and said, “Can I get a breathing treatment?” And they said, “Well, I don't think you really need it.” And I said, “Let's do it anyway.”

Tenesha: Good for you.

Erika: They did, and they sent me home.

Tenesha: You weren't having a heart attack or cardiac arrest. And that is where emergency medicine is needed, but if all of that looks okay, they have nothing else to offer.

[00:13:45] Erika:

Exactly. And now looking back, that was when Cedar (season) was really starting to peak. I was having a massive allergic reaction. It was scary. That January, I noticed my balance was starting to get bad. I live in a two-story house, and I fell down the stairs. And then I fell again just walking out the front door. That was not normal. You know, there was just no explanation for it.

[00:14:13] Tenesha: Were your knees feeling like jelly at this time, too? Or was it truly balance

and neurological?

[00:14:18] Erika:

I think it was more balance and neurological. And then I had so much inflammation in my nose that I couldn't breathe at night. I had like these major like nose strips. You know, I would always have a little bit of glue on my face.

Tenesha: Attractive.

Erika: It's great. My allergist said, “Well, I think you should get nose surgery.” I got had four different procedures done to help open up all the sinuses, but in the back of my mind I'm still thinking, why do I have much inflammation?

[00:14:48] Tenesha:

Definitely cedar causes inflammation and a histamine reaction. We now know something about your house that we didn't know then. That there was mold exposure in the house, which also causes inflammation and histamine. We now know that you have some methylation issues, meaning you're a poor detoxer. The surgery was probably hard on you with anesthesia and pain medications. That has to be detoxed out.

[00:15:09] Erika:

Yeah. In March of 2021, I got my covid vaccination. And now looking back, I think that what happened is that that caused an autoimmune response, it flared up again.

[00:15:25] Tenesha:

Let's break that down. The Covid vaccine, if it's doing what it's supposed to do, it's causing an immune reaction in your body. It's causing inflammation whether it's the infection or the vaccine. You started making antibodies against Covid. You are in an inflammatory storm at the moment. None of that you did wrong or on purpose. It was just a string of unfortunate events that at really worked your immune system hard.

[00:15:49] Erika:

Yes. And that was when my symptoms got to the point where I had to stop working again. I noticed my energy was super low. Excruciating headache. I went to a neurologist, and she said, “How many headaches do you have a week? And I said, “You’re not getting what I'm saying. They don't ever go away. It's not like there's a beginning and an end.” And they kept trying to pinpoint it as a migraine, but that didn't seem right. They put me on medication, and I realized I shouldn't have even been taking more than four in a month.

[00:16:24] Erika: But they didn't even say that when they prescribed it. I had to read it on the fine print, which at that time I could barely read.

Tenesha: That's concerning.

Erika: Yeah, I couldn't see very well. And memory loss again, the balance got really bad, the wobbly knees started again, and muscle aches. I felt like I had the flu, but it's not exactly like having the flu. It’s like my muscles felt stiff and fluidy if that makes sense.

[00:16:56] Tenesha:

The way I described it was it was deeper than the flu aches. It's almost in the bone, it’s like that or the synovial fluid in between your joints. It's deeper than just aches of the flu and it doesn't let up.

[00:17:09] Erika:

Right. And my neck was in so much pain and so stiff that I couldn't really move it. I started going to a physical therapist and I have interviewed her also. She's in the episode about pain if you wanna listen to that. She said at some point I think we're just gonna have to give up here. I don't wanna do that, but you're not making any progress. And we had even done dry needling which is extremely painful.

Tenesha: Yes, it is.

Erika: I was just like do whatever you can do to help alleviate this constant pain. It didn't do anything.

[00:17:44] Tenesha: You know, physical therapists, chiropractors, massage therapists are the first line of defense often to see a Lyme disease patient. I think it's missed a lot because people are in pain and that's where they seek first.

[00:17:51] Erika:

I agree. After I went to physical therapy and she said, “Really, I think it's an autoimmune issue. I had a routine allergy shot, which I had been doing for him almost three years, not a big deal. I felt kind of like a panic attack was coming on and I couldn't breathe very well. One of the allergy doctors who I'd never met before, said, “Well, you're going into anaphylactic shock. It was his first shot I heard him say to the nurse. I was like, oh man. I was laying down and, sure enough, I just shot straight up, gasped, and I could breathe. That was just very bizarre.

[00:18:37] Tenesha:

Again, this whole inflammation cascade I think you were in.

Erika: He was one of the coolest doctors. He said, “You definitely have an autoimmune issue. Let me order all this blood work and the ANA was positive.”  

Tenesha: It's definitely an autoimmune disorder.

Erika: Yes. I did get the MRI of the neck and that came back normal. It took me two months, to fight with my insurance company to get an MRI of my head, which was just ridiculous. We have one of the best insurances, Blue Cross Blue Shield. There was no reason.

[00:19:10] Tenesha: And you're having headaches for months at this time. Months consistent headache.

Erika: Five or six months without any relief. When I got the results from the MRI of my head, it came back normal.

[00:19:23] Erika:

And then I found a rheumatologist. I had provided her with two sheets of symptoms explaining my history. She didn't read it ahead of time, of course. Didn't really take the time to read it in the doctor's appointment. She apparently screens for like six major autoimmune diseases. And the kinds of questions she was asking me were just unrelated to any of my symptoms. Like do you get massive rashes all over your arm? Random questions, and I just did not feel heard or seen.

[00:19:56] Tenesha: Basically, she asked you a bunch of questions to rule out Lupus with the rashes. Again, you didn't fit into a box.

[00:20:01] Erika: Yeah. And I said, “I've got an appointment with a functional medicine doctor.” She said yeah, that's probably your best bet. I did go back to her once I got my diagnosis for Lyme and no response.

Tenesha: I remember you telling me that. You would expect someone to say, “Oh, tell me about that. How did you figure it out? What did we miss?

[00:20:24] Erika:

I did the same thing with my primary care physician. I had even sent him a video for doctors to help them notice Lyme symptoms in case he had another patient. I was like, these are things you should be looking for. I saw him again, maybe a year later. He had forgotten that I had Lyme. They didn't even put it in his notes.

Tenesha: Does this just make you furious going through this process, or does it make you sad?

[00:20:54] Erika: Interesting. Yeah, it was anger. I'm like, how much more information can I give you guys? I'm going above and beyond what most patients do and you're not meeting me with the same concern.

[00:21:08] Tenesha: Unfortunately, I think, and not making excuses for them, they don't know what to do.

[00:21:13] Erika:

Yeah. It was around that time that I started to look at my diet and I thought, well, if there's anything I can control, it's what I eat. I stopped eating white sugar, stopped alcohol, (dairy), I stopped eating gluten, thank goodness. The thing I had to give up was exercise. I literally didn't have enough energy to get through the day and do exercise on top of that.

[00:21:41] Tenesha:

Again, not advice from any other practitioners. These are just things that you had to figure out, which I know I'm preaching to the choir. It blows my mind that that's not the first thing people look at diet and lifestyle. And to your point of exercise, stress is stress. The body can only take so much when it's fighting.

[00:21:59] Erika: Exactly. And I'm remembering now, the physical therapist she told me, “I had a client that was in a similar situation, and they went Infinity Wellness, your practice.”  

Tenesha: No kidding.

Erika: And that's where I think that I filled out some form, but I didn't follow up because I just don't remember. And that's when I started writing everything down. All the material that I have for the book is because of all the notes. That's part of what I'm doing now as is getting all that information back together and making sense of it because I had no memory.

[00:22:31] Tenesha: You're right. You forget. And you can't describe that kind of brain fog to somebody. Like you had to have done it, but there’s no recollection. That is a scary place to be.

[00:22:42] Erika:

It is. My husband left and went to Montana to go visit my daughter. And I wasn't cognitive enough to realize we need to get all the food ahead of time to make sure that I have enough to eat for the next week. And I was really hungry, and I didn't have the energy to cook. I ordered something gluten free. I got in the car, I think I even had GPS on. I went to the wrong location and it took me forever to get to the place. And then I realized I had ordered grain and I couldn't eat any of it. And I just was like, I don't know how I'm gonna function with David gone.

[00:23:22] Tenesha: Would you say that was your lowest moment?

[00:23:24] Erika:

Yeah. Now that I think about it, that was around September 2022. And my neighbors suggested that I reach out to you, and I finally did. You and I went through my whole history and I felt sad for me. Saying all of the things that I've been through, like this is, this is bad.

[00:23:47] Erika:

And I remember you said, “I'm about 95% sure you have Lyme.” And you ordered eight vials of blood. It's not a big deal, it doesn't bother me. But I got there and they started taking the blood. And my arms from my fingertips all the way up to my elbows and then my feet up to my knees were going numb.

[00:24:10] Tenesha: I remember that we still don't know what happened.

[00:24:14] Erika: They said that my system was going into shock.

Tenesha: Wow. Yeah, your body was like no more stress, we can't take this.

Erika: I could barely walk out of the lab and get to the car. The sun was so painful to my eyes that I even put the windshield protector around my head while wearing sunglasses.  And any kind of noise was just excruciating.

[00:24:38] Tenesha: Noise sensitivity is a huge symptom we see in neurological Lyme. People can't handle loud noises, crowds, we see that a lot. Your nervous system was just too stimulated.

[00:24:50] Erika: And then we got all these test results back. And you told me that I had several diagnoses, including Lyme disease.  And I thought, well, that's a terrible diagnosis, but at least it's a diagnosis.

[00:25:07] Tenesha: I know when we come back the second visit, this is good news. We have an answer. Although nobody wants this, I would wish this on nobody. And at the same time, we know what to do with it.

[00:25:13] Tenesha: Hopefully in the next podcast, we can give people some ideas and directions that they can start healing themselves or find the right people to help them.

Erika: There is help and that's what I want people to know. There are people like you within the community that can help. And I think a lot of unnecessary suffering can be alleviated with the knowledge and being with the right practitioner.

[00:25:41] Tenesha: And telling your story again, very powerful, can help people get a diagnosis sooner, get help sooner. Versus suffering for decades and decades. Thank you for having me. I'm excited to see where this goes.

[00:25:57] Erika:

Your body is designed to heal, and it will, when you give it what it needs. You simply need real guidance. You may be tired of having issues like chronic fatigue, anxiety, and GI issues. It’s frustrating when you're written off by a traditional medical doctor and told you're fine when you're not. Imagine feeling like yourself again and experiencing optimal health. You want to know the root cause of the issue and regain your spark. This can become your reality. By healing naturally with the Infinity Way program. You'll be able to define and fix the core of your symptoms and achieve health again.

Resources:

• YourTruthRevealed.com/Infinity – Free eBook and Webinar by Tenesha
• Please subscribe and rate the podcast