Lyme Disease vs. Chronic Lyme Disease

It took me a while to write this post. There’s so much I want to share with you, but I’m afraid it would become overwhelming and I would lose you. The battle between Lyme Disease and Chronic Lyme Disease is probably not widely known across the country, primarily because Lyme Disease itself is not well known. I am going to do my best to try to share my what I know as it relates to the controversy surrounding this illness.

To start us off, I want to remind you that Lyme Disease is caused by a bacteria called “Borrelia” and it is most commonly found in deer ticks. Once you are infected with Lyme via a tick bite by an infected deer, it can take anywhere between 3-30 days before you noticed any symptoms. Once you noticed symptoms or you noticed a tick embedded in your skin it’s important that you see a doctor right away. At this point, you will be tested for Lyme Disease and if your test comes back positive you will be prescribed a round of antibiotics (most likely Doxycycline) for about 30 days. At this point the antibiotics will do it’s work and you should be ok. However, if you are bit by an infected deer tick and you don’t get treated within the first 30 days it can be hard to diagnose. The longer you go without being diagnosed, the harder it will be. This is where the controversy comes in.

Some doctors do not believe that an illness that goes untreated for long periods of time, such as Lyme Disease, could turn chronic. Some doctors believe that 30 days of antibiotics will do the trick and cure you. That is not the case with Lyme Disease. If you are infected and go untreated, the Lyme bacteria begins to take up residency in your body. The bacteria spirochetes begin to travel throughout your entire body and eventually every area of your body will become infected. Areas such as: (List not conclusive)

  • Central Nervous System
  • Brain
  • Respiratory System
  • Heart
  • Eyes
  • Dental
  • Muscles
  • Reproductive System

Once the Lyme bacteria invades the various areas within your body and the longer you go untreated, your symptoms begin to worsen and the illness turns Chronic, as it did in my case. Once this happens, the illness can be hard to detect, primarily because the current tests are not specific or sensitive enough to detect Chronic Lyme that has been invading your body for weeks if not months. The main reason for this failure to accurately test for Lyme is the fact that there are more than 1 strain of Lyme. The traditional tests that most doctors use will only test for 1, which means you could get a false negative. In order to be properly diagnosed you will need to be seen by a specialist who knows about Chronic Lyme and has access to the proper test. When the disease isn’t caught in time, it can spread throughout the body and cause chronic health problems that could otherwise be avoided with earlier detection and treatment.

The short story is, if you are bit by an infected deer tick and become sick, please see a doctor immediately and be test for Lyme Disease. Some of the early symptoms of Lyme Disease are:

  • a rash that looks like a red oval or bull’s-eye anywhere on your body.
  • fatigue
  • joint pain and swelling
  • muscle aches
  • headache
  • fever
  • swollen lymph nodes
  • sleep disturbances

Please note that only 70-80% of people infected with Lyme will develop the bulls eye rash, which means that 20-30% will NOT develop one. That means, if you notice symptoms and don’t see the rash you should still see a doctor and get tested. If you dismiss the symptoms as something else like the flu and don’t get tested and seek treatment, the bacteria will infect your entire body and turn to Chronic Lyme and become more challenging to treat. Symptoms will increase and become intense over time, again making it harder to treat. At this point you will need to see seen by a doctor who knows about Chronic Lyme Disease who can determine the best path and begin treatment. The longer you’ve gone untreated the longer it will take to see improvement. In some cases, Chronic Lyme Disease can become debilitating and cause disability.

More work needs to be done, more education, better testing, and increased awareness in order for people such as myself who have been suffering for years, to get the treatment we deserve. For more information, please visit my foundation’s website Windy J Cumberbatch Foundation. To learn more about more story, please check out my podcast “Windy’s Journey” now streaming on Apple Podcasts, Spotify, Google Podcasts & more!

Thank your stopping by and thank you so much for your support!

XO,

Windy

Loneliness & Chronic Illness

I have been living with Fibromyalgia and Chronic Lyme Disease for almost 2 decades. Wow! I don’t think I’ve ever said it like that before. Let me try it again…for almost 20 years, a little less than half of my life, I’ve been sick! As you can imagine, with prolonged sickness comes frustration and if I’m honest, loneliness creeps in at times.

You see, while my husband is working and the kids are in school, I spend my day at home alone. Outside of the chats with my girlfriends and catching up with family, I’m usually home in bed or on the couch pondering what to do next. To be transparent, what I’m really pondering is what CAN I do today? You see most days I am not feeling well enough to do the things I used to do or really desire to due to the various symptoms I navigate on a daily basis. I wake up each morning not really knowing what to expect or how I am going to feel. How I long for the days when I could get up and do whatever I wanted to do that day. Insert loneliness.

I think what’s really taking place is I am grieving the way my life used to be and a good friend of mine helped me realize that I would never get that life back, nor should I strive to. You see, the old Windy didn’t know she was sick and was living a life that could not continue. The old Windy had not stepped into what God had for her in order to stretch her into what God is calling her to become. Whew…that’s hard to hear at times but it’s true. If I were to go back to the way things were in the past, I would be far from who I am called to be. Even though it’s hard most days and even though I am lonely at times, I would not trade it for anything if it means getting closer to who I am created to be.

So what do I do to all day? Well I’m glad you asked!

  • I take lots of naps! (Naps are the best and much needed to allow my body to heal itself)
  • Eat (Way too much)
  • Read my Bible (Food for the soul)
  • Pray (Talk to God about all the things)
  • Nap some more (Ha!)
  • Think about ways to help others (Giveback)
  • Laugh at myself (When I’m not crying. Laughter is good medicine)
  • Check on my family and friends (I love you all)
  • Doctors appointments (I love my doctors too)
  • Repeat
  • Oh, I’m sure I take another nap!!!!

It can be lonely living with chronic illness and I am so thankful for the people in my life (You know who you are)who help me keep my spirits up and push through and never give up. This too shall pass.

Thanks for all of your support. It means everything to me. Please be sure to check out my new podcast, “Windy’s Journey” which is now streaming on Apple Podcasts, Spotify and Google Podcasts.

Until next time, XO

Windy

Repost: What Is Lyme Disease?

For those of you who may not know my story or my journey living with a chronic illness, I thought it would be helpful to share a few older posts that help to explain where it all started. My journey is not yet complete, but my faith continues to be strong in knowing that God has a plan for all of it. Over the next several months I will reshare posts that I feel help create more awareness.

Thanks for stopping by,

-Windy

For my very first post, I thought it fitting to share what the heck Lyme Disease is in the first place.  If you’re like me, you’ve most likely heard the very short version of what it is or maybe you’re unfamiliar altogether.  So here is goes;  below is how Lyme Disease is defined via Wikipedia:

“Lyme disease (Lyme borreliosis) is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.[1][2][3] Borrelia burgdorferi sensu stricto[4] is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases. The disease is named after the towns of Lyme and Old Lyme, Connecticut, US, where a number of cases were identified in 1975. Although it was known that Lyme disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981, when B. burgdorferi was identified by Willy Burgdorfer.
Lyme disease is the most common tick-borne disease in the Northern Hemisphere.[5] Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes (“hard ticks”).[6] Early symptoms may include fever, headache, and fatigue. A rash occurs in 70–80% of infected persons at the site of the tick bite after a delay of 3–30 days (average is about 7 days), and may or may not appear as the well-publicized bull’s-eye (erythema migrans). The rash is only rarely painful or itchy, although it may be warm to the touch. Approximately 20–30% of infected persons do not experience a rash.[7][8] Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early.[9][10] Delayed or inadequate treatment can lead to more serious symptoms, which can be disabling and difficult to treat.[11] The term “chronic Lyme disease” is controversial and not recognized in the medical literature,[12] and most medical authorities advise against long-term antibiotic treatment for “chronic Lyme disease”.[13][14][15]”

I know that’s a long definition, but it paints a very adequate picture of what I am currently dealing with.  I hope that you pay close attention to the last sentence pertaining to “Chronic Lyme Disease”, this will become more clear as in future posts…very interesting I promise.

Thank you for reading,

WJC