I’m going to try to keep this as short as possible, but I do have a lot to say on this matter, so. Buckle up; we’re in for a ride.
If this is your first time here, welcome. My name’s Tiana, and I’m happy you decided to drop by. Maybe you’re looking for answers. Maybe you’re looking for someone who’s on a similar health journey like yours. Whatever your reason is for being here today, I’m happy you could make it.
And if you’ve been following me for a while, welcome back!
I promised I was going to be 100% transparent on my videos and blogs, so I’m going to take this moment to be completely honest and admit that I almost didn’t push through with this. I woke up feeling heavy and exhausted. On top of that, my anxiety kicked in. I just wanted to crawl back into bed and wait the day out.
But I didn’t. I prayed it out instead. And the Lord reminded me that there are other people just like me going through the same thing, and they’re not giving up. If nothing else, He told me, you need to show up for them. Get up.
So here I am.
This is real life, you guys. I got up.
For those of you who’ve just jumped on my blog, I’m on a search for health answers. The gist of it is that I’m sick. And I’ve been sick for a long, long time, but I’ve only just gotten the confirmation I desperately needed. Now that I know I’m sick (and I know with what), I’m looking for answers for my health. I’m in this discovery phase of trying to heal and trying to figure out what I can do to holistically heal.
I’m by no means an expert. In fact, I’m totally new to chronic illness! I’m just learning what I can, and right now … sharing what I’ve learned.
It’s just so crazy how there was just so much information out there and I was missing it. I was missing it all because I had no idea where to go or what to look for, plus I didn’t have many to talk to about is all. So, I’m hoping with my videos and blogs, I can be that person for someone else.
Let’s get into it, yeah?
Lyme Disease: Starting Out
Yes, this is what I was diagnosed with. Chronic Lyme disease. How do you get Lyme? How is Lyme treated? What happens if it’s left untreated? What do you do if it’s been untreated for so long because you weren’t aware of it?
Hopefully, this helps someone; and maybe you relate to the symptoms now so you get it diagnosed and confirmed early on. Early enough that you can treat it with something simple, like antibiotics, before it gets out of hand and starts affecting other areas of your life.
If you watch my video – the one where I tell my story – I mentioned towards the end that I’m still waiting (yes; still waiting) on a slew of other test results to come in. Because I wasn’t done. Because it isn’t just Lyme disease with me and maybe it is the same for you.
I just wanted a full picture of what’s going on with my body and I highly encourage you to do this as well, because it is so telling. What you can get from different tests can be so helpful. Unfortunately, most of the testing that you might have to do can only be done outside of a conventional doctor. You’ll probably need a holistic doctor or a functional medicine doctor to be able to have these tests done. But believe me; it is so, so worth it. If it’s available to you, do it.
This was the case for me. I did all these tests and one of the major things that showed up for me was a ‘positive’ for two different types of mold toxicity.
I’m not going to go too deep into that right now, but if you check the symptoms of mold toxicity, a lot of them are similar with the symptoms of chronic Lyme disease. So testing positive for both Lyme disease and mold toxicity is very possible. The symptoms of these conditions kind of come together for a double whammy, which is most likely why I’ve been feeling the way I have. It’s technically doubled, you know?
But going back to Lyme disease…
I started on the CDC website. If you’re familiar with that site, then you’re probably familiar with some of the bits of info and data I’m going to share. I found a stat that, for me, was really, really telling:
“Each year, approximately 30,000 cases of Lyme disease are reported to CDC by state health departments and the District of Columbia. However, this number does not reflect every case of Lyme disease that is diagnosed in the United States every year.“
I just feel like this state is so understated because many people who have Lyme disease don’t even know they have it! So 30,000 is just a starting point. And 30,000 isn’t a small number, by any means. I just think of how many people out there are like me – like how I was back then. Going years and years without even realizing that they have Lyme disease, trying to write off the symptoms as something else. Old age. Fatigue. Wrong diet. Not enough exercise.
Please – do not write it off! Keep digging.
Lyme Disease: Definition & Symptoms
So, what is Lyme disease? How do you get it?
To put it simply, it’s caused by a bacterial species called borrelia burgdorferi that is transmittable through infected black-legged ticks. That one stumped me; prior to research, I had no idea what a black-legged tick was. I mean, I’ve seen ticks before. Aren’t they all the same?
According to Google, black-legged ticks are deer ticks. That didn’t help me much either, so I looked at pictures. Turns out, there are adult deer ticks and then there are nymph deer ticks. These are the ones that are tiny, difficult to see, and are – apparently – the most common form that infect humans with Lyme disease.
How crazy is that? That everything started with something so small – practically invisible?
The crazier part is that the more I dug into this and the more I read about these ticks and symptoms and signs (which we’ll get to in a bit), the more I realized how much having all this information could have helped me two years go. But, no use crying over spilled milk (did I get that saying right?).
Let’s start with the symptoms.
What are the Symptoms of Early Lyme Disease?
So, early symptoms of Lyme disease are different from symptoms of untreated Lyme disease. The longer you’ve had the bacteria in your body, the more time it’s had to wreak havoc on your body parts and body systems.
Tiny Red Bump to Bulls-Eye Rash
The very first symptom of Lyme to watch for is the “bulls-eye rash” – this happens at your infection spot. The first one I had (that I noticed) was on the back of my arm. It didn’t really hurt or itch like a bite would. It was just a small inflamed bump that I couldn’t identify. I didn’t think much of it so I brushed it off.
Soon after, it started to get bigger and started looking almost like a hive, except it wasn’t raised. It was just a round patch of angry red skin. So I thought, “oh, maybe it’s a spider bite.” I’ve had similar reactions to spider bites where they’d start small and then grow larger.
I brushed it off again.
It kept growing and then started to burn. Eventually, that tiny inflamed bump became a rash that covered almost my entire upper arm – from my elbow all the way up to my underarm. And I was so confused because I had never seen or experienced anything like this before.
As time went by, it started to lighten up. So I thought it was healing. I thought it was going away.
An area of the circular patch started to lighten up and fade. Of course I’d think it was healing. But the middle and outer circle didn’t follow suite. They stayed dark. Eventually, it became what is called a bulls-eye rash.
And that there is your first symptom of Lyme disease. If you have – or even had – a bulls-eye rash, you should get yourself tested for Lyme.
People ask me this all the time; “Did you notice the tick bite? Did you see a tick on your arm?”
I am certain that I didn’t. I had the bulls-eye rash but I never saw the tick. After researching more, I had a big “Aha!” moment. I knew why I hadn’t seen the tick. Like I said, the deer tick nymph is so small, it’s practically invisible. It measures roughly 2mm. If you’re not looking for it, you probably wouldn’t see it. So not noticing it is normal.
What Do you Do if You Have a Bulls-Eye Rash?
Get it looked at right away and ask for treatment. If what happened to me happens to you – as in, it’s left untreated for months/years – you’re looking at a multitude of other complications. Fever. Chills. Flu-like symptoms. Aches. Neck stiffness.
I had all that. And trust me when I say that it was not fun.
So! Fatigue. Body aches. Headaches. Neck stiffness. Swollen lymph nodes. If all these things accompany an angry red rash, I strongly, strongly suggest getting yourself checked out.
Your body’s going to be going crazy, too, creating all these antibodies to fight the infection. This means possible fevers and colds for a while as your body does its best to protect itself. Take that as another symptom.
Go see your doctor and get some antibiotics to knock it out right now.
Lyme Disease Testing & Treatment
This is a common question, and I want you to know – right away – that it can be very, very tricky. Because not all Lyme diseases are tested and treated equally.
Let’s start with the tests.
How do I get tested for Lyme Disease?
So the two most common ways to test for Lyme are called the Western Blot Test and the ELISA (Enzyme-Linked Immunosorbent Assay) Test.
The Western Blot Test detects “viral antigens” using antibodies. A positive Western Blot would show the presence of a viral antigen, which could indicate a live virus. If positive, that means you most likely have an on-going viral infection.
The ELISA Test is an enzyme test. Instead of using antibodies to look for antigens like the Western Blot Test, it uses antigens to detect antibodies.
A problem I read is that if you were infected too recently – say, within the past week or two – your body hasn’t produced enough antibodies to show up on the test. So your test could return a negative result purely based on the fact that you don’t have the antibodies to show for it.
But again; a negative test result with ELISA might not mean you’re negative. It might mean that you were infected too recently.
So it’s a matter of timing. Once you see the tick bite or the rash developing, time it. Go to your doctor, show them the rash, tell them your concerns about it being Lyme, and then ask for them to schedule an ELISA test or Western Blot test whenever they see fit.
Is your head spinning already? I am not a science-y person… so this took me a moment to grasp.
Another thing to note is that these tests can’t pick up the specific bacterial species you’re infected with. They can only detect the presence of antibodies/antigens that would be present if you were positive for Lyme; they will not say which species of borrelia burgdorferi has invaded your system. If caught early on, this information should not matter as much.
I encourage you go to https://www.lymedisease.org/ and research more information on the ELISA and Western Blot tests. Feel free to read up on them and deep dive a little bit more – at your own pace – so you can better understand what they do and what they’re for.
Lyme Disease: Testing Negative
Say you get one of your test results back, and it says negative. Under any other circumstances, this would be cause for celebration. But if you feel – in your heart of hearts – that this isn’t right, then please… Please listen to your body. If you have this gut feeling that something isn’t right about those results, then you need to do more extensive testing (like me).
This happened to me so many times. My results returned negative so many times, even though I really did have Lyme disease. I had a chronic illness. The only reason I finally got the confirmation I needed was because I persisted.
If you feel you need to have more extensive testing done, I’ve found two places you can try. They’re rated as some of the best in the U.S. for Lyme disease testing. Unfortunately, they’re not covered by insurance, so a lot of this is going to be out-of-pocket. This is why I recommend starting with an ELISA or Western Blot test. It’ll help you decide whether or not you need more testing.
The first place is called IGeneX. The second is DNA Connexions. I highly recommend visiting the websites (I’ve got them linked) and doing your own research regarding how they work. But these places are where I found my answers. Their tests actually told me information that I needed to know – like what bands of Lyme or what species of bacteria I am infected with – to move forward.
Honestly, a lot of these tests were driven by my desire for peace of mind. If you watch my video – my story video – you’ll understand just how desperate I was for it. I knew, in my heart, that I had Lyme disease. I just needed official confirmation. I just needed someone to tell me, “yes, you do have Lyme disease.” That was all I needed to hear. I just wanted to finally move forward, past all the doubt and wondering and anxiety. I mean, how could I look for treatments if there was “medically” nothing wrong with my body? How could I address the pain and fatigue properly if they were supposedly “just” symptoms of age or stress?
Lyme Disease: Positive – And Left Untreated
On the opposite end of the spectrum, let’s say your test comes back positive. Your doctor is most likely going to put you on a round of antibiotics. I read somewhere that these antibiotic rounds are in periods of two weeks. Some go up to a month, some can go even longer.
So if you’re able to get those tests done early and, consequently, get your diagnoses early, you’ll be able to treat the condition early using antibiotics.
But if you’re like me, wherein you spent years not knowing you had Lyme, the treatment isn’t as simple.
But that’s something to talk about at a later time.
The more research I uncover, the more I can share with all of you. I’m excited to share all of it with you, actually. So I hope you come back.
For this part, I’m going to briefly talk about what could happen if Lyme disease is left untreated.
It’s pretty scary, actually, because Lyme disease – if left to its own devices – can affect a crazy number of areas of your body. It can affect your heart, your joints, and your nervous system. It can cause inflammation all throughout your body. It can even affect your mental state, contributing to conditions like anxiety and depression.
It’s just insane.
I found this article on the CDC website, and it served as my starting point. I’d love for you to read the whole thing if you can, but I’m going to share some of the salient points here.
So I’ve already covered the early signs and symptoms, right? Fever, chills, headaches, fatigue, muscle pain, joint pain … all that fun stuff.
The later symptoms are definitely a little more severe. They list severe headaches, neck stiffness, and facial palsy. Facial palsy is when you lose some of the muscle strength in your face which can then lead to a feeling akin to temporary paralysis.
This happened to me.
Again, if you watched my story, you’ll remember how one of my scariest episodes was when I lost all feeling and control of the back of my tongue. I couldn’t move it. I couldn’t speak. The memory of the helplessness I felt during that episode literally haunts me to this day.
Other signs include rashes all over the body, arthritis, and severe joint pain and swelling – particularly at the knees. This also happened to me for a couple weeks. One of my knees was so swollen and so much larger than the other one. And I could not, for the life of me, figure out why. The swelling persisted for a few weeks before it went away. Thankfully, it didn’t come back. But believe me when I say those couple weeks were excruciating. I had to use a knee brace and ice my knee constantly.
That’s part of the later symptoms too, by the way; intermittent pain in the tendons, muscles, joints, and bones.
Another possible symptom is heart palpitations. And, yes; this is a big one. Please keep this in mind.
If you’re just sitting there and, all of a sudden, your heart starts to skip beats? That is not normal. Your heart should not just randomly beat erratically. That is a symptom of something else. That is a clear sign that something is wrong.
Other symptoms? Episodes of dizziness, shortness of breath, nerve pain. The latter – nerve pain – is something I’ve personally been battling for so long. Nerve pain is basically this sharp pain that shoots through your limbs and leads to numbness and tingling in your hands and feet.
If you’re waking up in the morning and your hands, your arms, your legs, or your feet are tingling – similar to that feeling you get when your legs have fallen asleep? – it might be best to recall how often this happens to you. It doesn’t have to be your legs. Maybe there’s pain shooting from your shoulders down to your hands. Maybe it’s shooting from your forearms to your fingers.
Really, nerve pain can strike anywhere.
Now, I’m not sure how true this is. This is just my observation. But I noticed that a lot of the symptoms I suffered from were on my left side – exactly where the tick bite/bulls-eye rash was. And with all the research I did and the fellow patients I’ve spoken to, I also learned that it’s very common to experience a majority of the symptoms on only one side of your body. I don’t know if it truly does coincide with where the tick bite is, but it’s entirely possible.
I’m going to wrap this up now with a simple message: please pay attention to your body.
Every single sign and symptom I listed here is not normal. Don’t ignore your gut feeling. Do not value a test result over your own intuition. If your body is screaming at you for help, you owe it to yourself to listen.
If you feel like you have chronic Lyme disease – or any other chronic illness – I really, really hope this helped you. And if you have any questions at all, please feel free to reach out to me.
I’ll talk to you all real soon.