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

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

 

 

 

 

Where It All Began

So my story is quite complex in that I have been quite ill for many many years and could never figure out why or what was going on.  Over the past decade and more I have been seen by as many as 10 different medical physicians for a variety of symptoms, and  you can’t imagine the amount of money that comes along with all the copays and medication. Everything came to a head last fall when my health took a turn for the worse and I pressed doctors for answers and got copies of my personal medical records.  Here we go:

Upon reviewing my records my story dates back to April 1, 2003.  I woke up one day and noticed a circular rash on my right arm just below my shoulder and I had several smaller rashes on my torso.

Lyme Rash
Lyme Rash

 In addition to that, I noticed later that day that I was really tired to the point of exhaustion.  A few days later I noticed a tremor in my right hand, difficulty concentrating and had a hard time speaking and formulating sentences.  This obviously alarmed me so I called and made an appointment with a doctor who specialized in Internal Medicine.  She examined me and made note of all my symptoms and dismissed it as Rosacia and Non-Essential Tremor and stress.  A few months later I began having severe migraine headaches that would last weeks at a time.  This would continue for a few years.  Then in 2007 the tremors became worse along with the migraine headaches.  I went to my primary care physician who treated me for migraine headaches and suggested that I speak with a counselor for anxiety as he felt that’s the reason for my tremors.  Keep in mind I told him that I was not stressed or anxious, but he assured me that it must be the case, so taking his advice I made an appointment.  After a few sessions, the counselor did not see a need for me to continue.  I could have told her that!!

My symptoms continued for a few more years and I continued to get the same answer that it was just stress or in my head.  I was given all kinds of medicine to treat and prevent migraine headaches that only worked for a short period of time.  As you can imagine it became quite exhausting and frustrating.  I was taking care to 2 small children and they needed me. I was in and out of the Emergency Room and doctor’s offices over the next few years trying to get some relief. I would pray to God for answers…they would eventually come, but it would take a few more years.

Fast forward to 2011.  I was on my way home from work and all of a sudden I just felt as if I was going to pass out.  My hands were both trembling out of control and I could not focus or think and had a very hard time speaking.  I became quite frightened and called my husband on the phone who told me to meet him at the hospital.  Upon arrival I was seen by a neurologist, given an MRI, CT Scan and EKG.  You see at this time, my heart rate was up, I was lethargic and not my self at all.  I was admitted and told to make an appointment with a neurologist who would further evaluate me.  The day of the appointment I was told that I had a Chemical Imbalance as well as Anemia and again an Unexplained/Non-Essential Tremor and was given several scripts of medicine and sent home.  The medicine would “work” for a while and I thought finally I was going to get well.  Not so!  My symptoms would return as well as some new ones.  In 2012 I began to forget things and experience anxiety and I would easily become irritated over the smallest things.  My tremors were at an all time high, it became hard for me to hold items with any weight to it.    I thought just maybe the doctor might be right-that I was under stress from my job and didn’t realize it; and now that I no longer held that position maybe my symptoms would go away.  Not so.  The exhaustion increased, but I continued to push myself.  

It’s now 2013 and by this time I am just beside myself.  I think it was July or August that I started having issues with my legs.  It felt like my legs were on fire!  I thought I had slept wrong or something and dismissed it.  Over the next month or so the pain got worse, to the point that it kept me up at night.  My legs would go numb at will without warning.  The pain would go from the bottom of my feet up to the thigh.  This went on for a few more weeks until I went to visit my neurologist yet again.  He performed all kinds of test and suggested that I had Restless Leg Syndrome or MS.  Here comes more medicine.  A few months later I started having pain in my abdomen near my liver.  Blood tests had shown that I had an increased Ammonia Levels and I needed to see a GI doctor.  Here we go again…So the GI doctor ran some additional test and made the decision for me to have a Liver Biopsy due the fact that the high Ammonia Levels usually indicates issues with Liver function and with my family history of Liver Disease (mom passed away in 1994) he thought I should have this done, so I did.  The results were inconclusive.  The doctor was stumped and said he didn’t know what else to do for me and my liver appeared to be functioning normally.  Are you kidding me?  Here I go back to the Neurologist and he has no answers for me either other than to continue to monitor my ammonia levels for the next few months.  I would be in and out of the hospital lab having my blood drawn; I had every blood test known to the medical world.  My ammonia levels would continue to go up and down without a “real” reason.  Here’s where my story gets interesting.

I met a young lady who heard of what I had been going through (as she had been dealing with similar situation herself) and suggested that I might have Lyme Disease.  You see for many years, she too had been in and out of the hospital and several doctors offices trying to find answers and had eventually been diagnosed with Chronic Lyme Disease.  She sent me all kinds of literature and I started researching the illness on my own.  Most of what I read resonated with me and what I was going through.  I took a chance and called my neurologist and asked to be tested.  He said he didn’t think it was needed but did the test anyway.  The results were negative…or so I thought!  It was during this time that I saw a documentary on Lyme Disease called “Under Our Skin” .  It documents the stories of several different people who are dealing with Lyme Disease and the “controversy” surrounding it.  I will explain later.  Long story short there is a more detailed test that must be performed if a person has had Lyme Disease for more than 1 year and most doctors don’t want to deal with it (again I will explain later) or they don’t have the knowledge needed.  I called my Neurologist up and asked to be tested for “Chronic Lyme Disease” and was totally shocked by his response.  Here’s what he said (via his nurse): “Chronic Lyme Disease is a very controversial subject and I don’t want to test you for it.  If I do and you come back positive, I will have to treat you (since I am his patient) and I don’t want to deal with that.  I think you should see an Infectious Disease doctor who can maybe help you”.  I was beyond upset. Don’t these doctors take an oath to do what they can to help all patients????  I guess that went out the window…

Help would eventually come…

Stay tuned!

WJC

Photo Credit:

Logical Images, Inc.