The Mental Impact of Lyme Disease

Ask anyone who is living with Lyme Disease whether the illness has taken a toll on their mental health and I’m sure you’ll discover that a large percent of them would agree that it most definitely does. In doing some research over the years, I was shocked to learn that 28% of people living with Lyme have an increased likelihood of developing some sort of mental illness. Which in my mind means more work needs to be done to understand the illness, increase more awareness to get Lyme patients the care they need and deserve.

Since Lyme Disease has such a huge impact on your overall health, it’s inevitable that there would also be an impact to your finances, as treating Lyme can become quite costly. This heavy pull on your finances can lead to anxiety, isolation and depression. It can also have a negative impact on a person’s relationships, work life, cognitive health and emotional stability. In the most severe cases of Lyme Disease (Chronic Lyme), patients suffer for longer periods of time, even a lifetime of major nerve abnormalities, memory loss, and a host of other issues that can have an impact on their ability to function on a day to day basis.

Lyme Disease is not easy to diagnose or treat, which can be frustrating for the person living with the illness. This can contribute to the emotional toll that comes with the illness. Being told by some “You don’t look sick” or that “It’s all in your head” because so little is known about the illness. It can leave the patient feeling like their fighting the entire world and all they really want to do is feel normal.

We have a long way to go to bring about more awareness and educate society on the seriousness of Lyme Disease and the very real and long lasting impact this disease has on a person’s mental health.

Want to make a difference in the lives of those suffering in silence with Lyme Disease? Please consider making a donation to the Windy J Cumberbatch Foundation where our goal is to Empower, Encourage and Inspire those living with Lyme Disease and other chronic illness.

Thank you for your support!

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Gluten Anyone?

So for those of you who know me really well, you know how much I love good food! I guess you could say I’m a self proclaimed “foodie”.  My husband Carl and I like to try new places to eat. Carl has created a list that he keeps in his phone of places he wants us to try.  Our friends often call on us when they are planning a date night and want a yummy place to eat.

Now, let me tell y’all what happened to me about 2 years ago!  I still can’t believe it myself…

I guess it was Summer of 2018.  I’m starting to get used to the daily IV infusions, when I began to experience some issues with my digestive system.  Right after I would eat, I would begin to experience some discomfort, however it was inconsistent so I didn’t really pay too much attention to it.  As the days and weeks went on, I began to notice pain in my stomach that at times hurt so bad that I would double over in agony.  My joints would begin to hurt, first in my left shoulder, then it would progress all over my body.  It was so strange, and I could not understand what was causing the pain.  A few times I would become nauseous and begin to vomit until whatever I ate was out of my system.  This went on for months until I mentioned it to my doctor who would run a series of tests to try to figure out what was going on.  A few days went by and the phone rang.  The doctor asks me if I had ever heard of Gluten.  I said yes, and asked what that had to do with me.  He said, “Well your test results are back and you cannot have Gluten”.  Say what????  He started talking to me about Celiac Disease and then asked if I’d always had issues with food causing me pain.  In that moment I couldn’t think of anything, I was still in shock by what I was hearing.  Honestly, the only thing on my mind was bread and how this news was going to impact my love for it.  I mean bread is one of my favorite things and now that was gone…at least that’s what I was thinking in this moment.

Fast forward one day when talking with one of my college friends, she reminded me how I would get so tired and not feel well after a meal.  I would always complain of my shoulder joints hurting, feeling sick and needing to lay down.  Then I spoke with my dad who shared that he and my mom had a hard time finding formula for me because I had a hard time with it. In 1972, my parents didn’t know what Gluten was (I guess my pediatrician didn’t either-Ha!).  So, it was concluded that I’ve had this issue with Gluten my entire life, but the Lyme Disease triggered it in such a way that I could no longer tolerate it, even in small amounts.

Nowadays, whenever I eat even a very small amount of Gluten, I begin to feel extremely sick and my small intestine tightens up and my body is flooded with intense pain and inflammation.  The only thing that helps is for me to bring up whatever I’ve eaten and even then I still feel the side effects for about a week.  I hate dining out now because I feel like I am interrogating the server to make sure there is no Gluten or cross-contamination.  You might be wondering what cross-contamination is.  To put it as simply as I can, it’s when you have food that does not contain Gluten and cook it (or use the same utensils ) on the same surface, skillet etc as you would food that does contain Gluten, that creates cross-contamination.  For me, I am so sensitive to Gluten that even the slightest error will cause a huge issue for me so I have to be careful.  Many restaurants will tell you their food is Gluten-Free, but there’s so much cross-contamination going on in the kitchen that the Gluten Free food is no longer Gluten Free.  It’s hard to explain…

I would love to see a lot more education about Gluten/Celiac Disease in the restaurant industry. More needs to be done for restaurant owners, chefs, and their staff , to better understand the risks.  Additionally, to understand how to properly prepare Gluten Free options and more importantly, how to eliminate cross-contamination.  I do see some progress, and there are quite a few places to eat here in the Austin, TX area that understand and do it right.  I feel safe at the places that know what I mean when I mention cross-contamination or have a protocol in place when someone requests GF options.  Here are a few of my favorite places (in no particular order) that have many options and/or have a protocol in place to avoid cross-contamination:

These days, during the COVID-19 pandemic, we are cooking most of our meals at home, but one day I hope to enjoy a few of these places again.  Until then, off to the kitchen we go!

Until next time,

XO,

Windy

P/S

If you know of a great place to get Gluten Free options in the Austin, TX area, please comment on this post or shoot me an email to windy@windyjcumberbatch.org

Windy Eating Dee's Cupcakes

Me eating a GF Red Velvet & Chocolate Chip Cupcake made by our daughter, Dee, owner of Dee’s Sweets & Treats!

What Those Of Us Who Suffer From A Chronic Illness Want You To Know

Since being diagnosed with Chronic Lyme Disease, I have been blessed to have the support of a loving family (a special shout out to my hubby Carl) and some pretty amazing friends.  Whatever I need, they are always there to encourage me and do whatever they can to make things easier for me.  That being said, there are some things that you may not realize about me and others who suffer in silence out of love and care for those near and dear to us.

Most days, on the outside to most people I look completely normal.  If only you could see what’s really going on inside. There’s a lot going on.  I work hard to hide my symptoms because I don’t want others to feel sorry for me, more importantly, I don’t want people to worry about me.  I’ve always been one that is independent and self-sufficient, but with this illness, at times I need the help and support of others which is at times hard for me to accept.  You see, on the outside, you don’t see the anxiety I deal with (thanks to brain fog and short term memory loss), hoping I don’t forget something important, like how to get home (which has happened) or the intense pain that consumes every ounce of my being or the hand tremors that makes my writing impossible to interpret or the days that my legs just decide they just don’t want to cooperate and last but not least when out of the blue I lose my voice for no apparent reason.  What a way to live right?  That’s just scratching the surface.  Because I care so much for my family and friends (each of you), I go to great lengths to disguise what I’m going through.  If there’s too much attention on my symptoms, I become insecure and stressed about what others might think of me which is obviously no way to live.

I share all of this with you to say, 1- thank you for your support, it really means a lot to me, more than words could ever say and 2- most days there’s a lot going on with me so if I seem a bit off, especially in social settings it’s not you, it’s me.  I am hopeful that one day I will be able to report that I am in remission or that I am completely healed.  Until then, keep me in your thoughts and prayers and I will be sure to do the same for you and your family.

Thank you for reading!

XO,

Windy

You Are What You Eat!

Since being diagnosed with Chronic Lyme Disease, I’ve come across people who have suggested that what I eat might be having a negative affect on my body.  This is not something I wanted to hear because, well if you know me, you know how much I love to eat.  I must admit that my husband and I are known for going on date night and finding a new restaurant to try in downtown Austin.  We have a running list that we work from and are always adding to it!

During the month of January, I decided to give healthier eating a try to see if would help with some of the symptoms.  I gave up meat, coffee (boy was that hard), sugar, bread, and dairy!  Did I mention how much I love a good steak?  I started eating more fruits and vegetables and much to my surprise I slowly started to notice a difference in the way I felt each day.

The first week was the toughest as I started having caffeine withdrawals in the form of some pretty intense headaches. Once I got past that, things started to get better for me.  Right away, I noticed less inflammation, especially in my stomach area.  I think that is a direct result of me giving up bread and pasta, which I love almost as much as I love a great prime rib.  I also noticed the brain fog decreased a bit as I felt a greater clarity at times.  Not all the time, but it was a little better.  I didn’t feel as sluggish or drained as I normally did and less pain in my joints.  One new thing that I tried that I plan to continue is at least once per week having a carrot/turmeric shot with black pepper.  Since I started taking those shots, I have noticed less pain in my joints and less inflammation.  The black pepper helps with absorption.

To make a long story short, I like the way I feel when I’m making better food choices and will try to keep it as much as possible.  I have re-introduced some of the foods I had avoided, slowly and will only eat many of them in moderation if at all.  I’m still not back to my having my daily Americano from Starbucks, but’s that probably not a bad thing!

Still fighting,

Windy

 

 

 

 

What Is Lyme Disease?

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