Spread Awareness, Spread Support, Spark Change.

5/23/2016 Osmosis Skincare 0 Comments




On a gloomy Sunday afternoon in May, I was about to head down the road to Colorado Springs to the home of La Vonne and Chelsea. This mother daughter duo both suffer from Chronic Lyme and Co-Infections in relation to Lyme. The original plan was to film a 10 minute documentary on their struggles with this disease that still, in a world with limitless technology and knowledge, continues to stump medical professionals and have many organizations up in arms regarding treatment, coverage, diagnostics and support. It generally tends to fall way below the radar. Right as I was about to head out I got a message from Chelsea. She was in urgent care experiencing seizures and in dire pain. I immediately felt a hot poke in my heart and wondered what I could do to help ease her situation. I was struck with the thought that plans can never be set in stone when you have a disease like Lyme and symptoms can strike whenever they feel like, and often you don't get any sort of warning. It was an "ah-ha" moment and needed reminder to always be adaptable and ready to change plans quickly... that is life, after all. 

Chelsea and I agreed that a phone interview would be more probable and less anxiety-inducing. Why did I still push to do an interview you may be wondering? Well, after weeks of research on this phenomenon known as Lyme, I realized that Chelsea and her mother had a story that needs to be told. That is the only way to spread awareness, and the only way to open a healthy dialogue regarding the issues surrounding Lyme Disease. Personal stories trump statistics in my book, always. Before we get into the interview let's look at the basics of this disease.

*Lyme is generally contracted through a tick bite. More specifically a Deer Tick or Black Legged Tick. If a tick is infected with the Borrelia Burgdorferi Bacteria, it can transmit that bacteria into your blood stream while feeding.

*These ticks have a bacteria called spirochete—a corkscrew-shaped bacterium called Borrelia Burgdorferi. This corkscrew shaped bugger can 'dig' through any part of the body and enter your brain 24 hours after the initial tick bite.

*Lyme CAN be passed to unborn children during a mother's pregnancy.

*Lyme effects the nervous system, organs, and joints if left untreated.

*Lyme Disease can mimic over 300 different types of diseases and infections, many medical professionals believe that Lyme is the underlying and contributing factor to many of those diseases.

*Lyme is very difficult to diagnose, making treatment of early Lyme inefficient and treatment for chronic Lyme almost impossible.

*Treatment and diagnostics for Lyme are rarely, if at all, covered by insurance.

*According to the CDC 300,000 people were diagnosed with Lyme Disease last year. That does not account for the nearly 15% of people who get misdiagnosed.

Now for the interview: Meet Chelsea!

Osmosis: Hi Chelsea, let's jump right in. How did you contract Lyme Disease?

Chelsea: I was born with it. My mother was bitten by a tick when she was young. Her Lyme Disease went undetected and misdiagnosed for 22 years.

Osmosis: 22 years! That is unsettling. Being that you were born with it, how quickly were you diagnosed?

Chelsea: I was diagnosed properly in my late 20's. Before the Lyme diagnosis, I was told I had depression, anxiety, joint issues, rheumatoid arthritis, and multiple other autoimmune diseases.

Osmosis: Do you still struggle with those issues today?

Chelsea: I do. Because of the Lyme Disease, I have an incredible amount of Co-Infections. I struggle with arthritis, COPD (I have never touched a cigarette), neurological issues and much more.  Had my Lyme been detected earlier, there is a great chance I would have gone into full remission.

Osmosis: After all those years, how were you finally diagnosed?

Chelsea: Well, there are only a few types of tests that can detect the Borrelia Burgdorferi bacterium. One test, the ELISA Test, which detects the BB Bacterium anti-bodies and the Western Blot Test which further tests those antibodies. At first, I did not "fill out" all the blots in the secondary test. I was also told by many doctors that Lyme does not exist in Colorado. My mind was a little blown, and it was not until I got secondary tests by a Doctor who specializes in Lyme in Orlando that I was properly diagnosed.

Osmosis: After all of those years, that had to have been frustrating to finally have an answer, but also know that your disease had progressed to the point that treatment would be extremely difficult.

Chelsea: YES! My daily treatment consists of this: (see image to right) It is so hard to keep track of my dosage and times to take my medications. Especially when most days I can't even walk to the bathroom, or I throw up the second I get out of bed, or I can't remember what I have and have not taken yet.

Osmosis: Is it safe to say that you are essentially stuck inside your home most of the time?

Chelsea: Absolutely. I never know how I will feel each day when I wake up. Not to mention that it takes me anywhere from 1 hour to 3 hours to even wake my body up enough to get out of bed.

Osmosis: With that thought in mind, what does your daily routine look like?

Chelsea: There is no such thing as a daily routine. I can't book a morning coffee date with friends or make any concrete plans. My day consists of taking one med, then waiting two hours before I can eat. Taking another med, then waiting an hour to drink water. Taking one pump of a supplement then waiting 30 minutes to take something else. So, my day consists of trying to keep my treatments on track. After that, it is all about taking care of my three children. Luckily my husband is of great support.

Osmosis: WOW. That sounds incredibly tough. I don't think I realized how difficult this disease could be. What are some misconceptions you feel need to be cleared up regarding Lyme Disease?

Chelsea: I just want people to know that people (including myself) with Lyme and Chronic Lyme are not making up the discomfort, pain and downright awfulness that is Lyme Disease. I feel like because this disease has yet to be viewed as an epidemic and because it mimics so many other diseases and infections and causes so many co-infections, people assume that we are lying about it. BUT really? Why on earth would anyone lie about this type of pain? I take all my treatments, I am still in pain. If there were a miracle cure for Chronic Lyme I would be the first in line for it. I have to be in a wheelchair when I go grocery shopping for my family and I can feel the looks of judgment on me the whole time. It is hurtful, and I just want people to assume that kindness is the better reaction, not judgement. I often hear people say, "You don't look sick" or "Have you tried getting outside and forgetting about your 'issues'" and I just get tired of justifying that what I am experiencing is real. I may look fine on the outside, but until you are in my head and in my body you really have no idea what I am actually going through.

The most common cause of death of  Lyme Disease is suicide. Not being able to be properly diagnosed, having your brain play tricks on you, having your organs shut down on you with no explanation is the worst sensation. Then to find out that it was left untreated for so long that remission may not be possible; is in a sort, a death sentence and very hard to wrap your mind around.

Osmosis: Lacking knowledge, and not taking the time to learn about something like Lyme sounds like a horrible enemy.  What is the best way to spread awareness for Lyme Disease?

Chelsea: Just talk about it. Learn about it, even if you don't know anyone with Lyme Disease there is no reason you shouldn't be aware of it. There are some great resources out there for education. There just needs to be a consistent and open dialogue regarding Lyme Disease. The more people that are aware, the more organizations like the CDC or other medical institutions are inclined to hopefully take a closer look. Lyme is an epidemic. It is not just in the Northwest, it can be, and is everywhere.

Osmosis: Chelsea, thank you so much for breaking down this disease with us. Personal stories really do strike a chord with people.

Chelsea: Of course. It is nice to be able to speak to my struggles as a "normal person." I love that celebrities who suffer from Lyme speak out, but I feel like we miss a sliver of relate-ability. Celebrities have the power to help shine a light on things, but until you hear it from someone "just like you"... sometimes it doesn't seem real. I am happy to share my story in hopes that it helps others and brings about a better understanding to the disease.

Check out our Take a Bite Out of Lyme video and challenge here.

* For those struggling with Lyme Disease, consider talking to your Doctor about adding Restore into you treatment routine. Trioxolane (the main ingredient) is like a hyper oxygen molecule that goes right into your blood stream, helping oxygen get into the body. Those who have used Restore for additional treatment of Lyme have reported heavy die-off during their second week of use. If this occurs, lower your dosage to once a day until the die-off ends.*

Resources:

https://www.facebook.com/fightlymenow

http://lymediseasechallenge.org/join-lyme-disease-challenge/

http://www.mayoclinic.org/diseases-conditions/lyme-disease/basics/definition/con-20019701

https://www.lymedisease.org





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