Happy May!

 

Happy May!

I should have written this yesterday but as you know, life happens.

The CDC (Centers for Disease Control and Prevention) is recognizing May as Lyme Disease Awareness month. That sounds exciting, no? If you pay close attention you’ll find hundreds, maybe even thousands, of infuriated Lymies and supporters. Why is that?

Lyme Disease is a tricky one. The CDC’s position on Late Stage, or Chronic, Lyme Disease is not very straight forward. They tend to deny the existence of Lyme after treatment, but a direct quote from their website states the opposite, “Although sometimes called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome” (PTLDS).”

Now, I cannot get into the whole CDC denial debate because I am one of those infuriated Lymies, however my goal for this post is to educate about Lyme Disease. So without further ado, here are some of the questions I get asked most frequently:

1) Can you only get Lyme Disease in Northeastern US?

It is most common in the Northeast and Midwest regions, there are reported cases in just about every state.


2) If you don’t develop a “bullseye rash”, are you safe?

      The bullseye rash or EM (erythema migrans) rash is the most common symptom associated with Lyme Disease, however not all infected individuals have a bullseye rash nor does a bullseye indicate you definitely have Lyme. Some individuals can even have a rash in a unnoticeable location, such as the scalp. In my experience, and part of the reason I went undiagnosed for so long, I did not have a visual bullseye rash. 


3) I was bit by a tick, do I definitely have Lyme?

NO; Even if you’ve been bit twenty times, you still may not have Lyme. If you remove the tick before it burrows, without causing it to regurgitate, you will likely skate free without Lyme. However, ticks can carry more than Lyme Disease, so if you suspect a tick has bitten you it’s always a good idea to get it checked out.


4) How do I remove a tick from my body?

The tick’s goal, once it bites you, is to attach itself as firmly as possible and fill up on your blood ― it’s gross, I know.

To remove a tick, you want to make sure the entire head and body come out of your skin. It is not a comfortable process, their little teeth are damn sharp. The best way to do this, is to use tweezers, pinch as close to the head as possible, pull up and out.

DO NOT burn the tick while it’s still burrowed in your skin. The old trick to removing a tick is to light a match, blow it out and hold the hot match to the rear of the tick. This will cause the tick to release its chompers, and back out of your skin. However, this will also cause the tick to regurgitate any and all pathogens in its body into your blood stream.

Once the tick is removed, the only ways to kill it, is burning or suffocation. They are indestructible, you can’t drown them or squish them. Often, I keep them in an airtight sandwich bag. If you’ve been bitten and suspect pathogens were released, you can save a tick and have it tested by a local lab to see what pathogens it was carrying.


5) How do you test for Lyme Disease?

Currently, there are no tests that are 100% accurate. The most common, the Western Blot (blood test) is has about a 65% accuracy rate. Likely, if you suspect you have Lyme, a Lyme Literate Medical Doctor (LLMD; certified through ILIADS) will take several blood and urine samples, but treat you based on a clinical criteria.


6) How do you treat Lyme Disease?

There’s no one bullet “cure” for Lyme Disease. If you were recently bit for the first time, you will likely take antibiotics orally for less than a month; the quicker you treat it, the better off you are. If you were bit in the past and went through a period of time undiagnosed, that’s where it gets a bit tricky and treatment options change. You will likely be presented with antibiotics as a first choice, and those might do it for you. Next comes herbal protocols, supplements, etc, etc, etc.

One of the most important things about treating Lyme is not killing the Lyme, but releasing the dead pathogens from your body. When the antibiotics or herbal protocols work, they kill Lyme pathogens, which is a good thing! Often there are so many dead cells during this process, that it becomes toxic to your body. This causes what is known as a Herxheimer Reaction, or herding. Herxing can be a terrible experience for some people, and some do not experience it at all. To reduce or prevent herxing, you need to remove these toxins from your body in the form of detoxing. I’ll write more on herxing and detoxing in a later post because I could go on and on.

No one person responds the same to treatment, some are healed quickly, others take longer. Some choose antibiotics, others choose herbals. There’s no right or wrong way to do it.


 

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Here it goes…

When someone asks about my illness, they’re usually referring to a diagnosis — like “What do you have?” — but it’s not that simple. What I have is a combination of complicated symptoms, that affect every system in my body, and don’t necessarily fit under one “diagnosis”. Sure, if you asked that question, I could respond with a list of things I’ve been diagnosed with, but again it’s not that simple. Or, I could recant my entire story up until this point and you’d still be wondering, “So, what do you have?”.

Let me clear that up once and for all.

First, it’s important for me to add that I did not receive a diagnosis of any kind until I was sixteen years old. I silently suffered for sixteen years. I saw hundreds of doctors in several states. I was a medical case that nobody wanted because they couldn’t diagnose me. Six days before I graduated from high school, (yes — I graduated at sixteen but that’s a story for another time), I finally received one diagnosis leading me on an entire new journey of healing and discovery. It was unreal. It was equally terrifying and thrilling.


The most powerful factor in my illness is an autoimmune disorder. Basically, my immune system hates me. Just kidding, but it’s a bit confused! The immune system’s job is to produce cells (T-cells and B-cells). These cells bind to antigens (cells responsible for causing an immune response; the bad guys) and the antigens cause the immune system to produce antibodies (these are the warriors; cells responsible for killing viruses, bacteria & bad guys). The problem is, when my immune system recognizes an antigen (when I get a virus or bacteria) and feels the need to produce antibodies, the antibodies don’t attack the virus or bacteria. Instead, the antibodies head north and attack my hypothalamus and brain stem. So not only does the virus or bacteria continue to wreak havoc on my body by burrowing it’s way into my blood stream, but my brain also suffers.  This autoimmune disorder will stick with me throughout my life, but I manage it pretty well.

To make my autoimmune disorder even more complicated, I was bit by a tic when I was four years old. The tic that bit me was carrying Lyme Disease, which is pretty common, but it was also carrying less commonly understood pathogens known as Bartonella, Babesia, and Mycoplasma. These parasites lived in my body, producing autoimmune reactions for twelve years, and continue to do so, as I work to rid my body of these diseases; this is known as Late Stage Lyme Disease. While I went undiagnosed for so long, these pathogens burrowed into every body system; they’re in my brain, they’ve paralyzed my entire GI tract, they’ve altered my breathing and heart rhythm. I’ve been working with one of the best specialists in my state for four years, tearing apart my body, to get these things out. They are tough little fuckers. Nowadays, I’m just about in remission. Due to the nature of Late Stage Lyme Disease and my history of autoimmune disease, it’ll never go away completely.

So at this point in my life, I wish I could say I’ve got it under control, but I still have a long way to go. But, if you were to ask me five years ago where I’d be today, I would’ve told you I’m not going to live past twenty, or even eighteen. I certainly wouldn’t imagine I’d be semi-healthy, living an active lifestyle, working more than full time and happy.

For now, I’ll stop hating my port, I’ll continue my treatment and keep kicking ass.