This blog post has been updated in April 2020 because of the recent controversy over medications being used or not used for the Covid-19 virus pandemic that I had taken for Lyme disease.
The current controversy really got me fired up and I had forgotten the blog post written 9 years ago until an aunt of mine messaged me last night looking for it.
Table of Contents
Now My Story With Lyme Disease
Lyme gets in the way again! It’s been a challenging year here at Inspire to Thrive in 2014.
How do we continue to write, blog, work and enjoy life when life’s challenges keep coming at us?
I decided to write about when Lyme gets in the way as part of my “Causes” category of posts.
Now, I’ve come across so many people still today who do not understand what Lyme disease is. They do not know what it can do to a person.
I’ve always felt fortunate that I was able to overcome Lyme many years ago. I had several cases of Lyme along with meningitis over the years.
My life literally stopped at a time over ten years ago. And then recently I got infected again.I've always felt fortunate that I was able to overcome Lyme many years ago. #Lymedisease Click To Tweet
What Are Ticks?
Ticks are external parasites. They live by the blood of mammals, birds, and reptiles. These ticks transmit diseases such as Lyme, tick-borne meningoencephalitis, rocky mountain spotted fever, and several more types of diseases.
They usually cause a fever or flu-like symptoms.
Did you know that ticks can harbor more than one disease-causing agent? Patients can be infected with more than one pathogen at the same time.
This makes it more difficult to avoid Lyme getting in the way. It makes it harder to diagnose and treat the disease. Ticks love warm humid climates and most have a density of hosts to live on such as deer, and other mammals including humans.
No wonder Lyme gets in the way when it is so hard to diagnose.
What Are The Symptoms of Lyme Disease?
There are many different symptoms that can affect people. Some are:
- Tiredness to the point of Exhaustion
- Flu-Like Symptoms
- Joint Aches and Pains
- Stiff Neck
- Facial Paralysis
- Sore Throat, Swollen Glands
- Double Vision
- Eye Pain
- Loss of Appetite
- Ringing in the Ears
- Light Sensitivity
- Sound Sensitivity
- Muscle Pain and Weakness
- Mood Swings
- Numbness in Body
- Symptoms That Come and Go
- Rash and of course the Bull’s Eye Rash
- Extreme PMS Symptoms
- And many many more as Lyme gets in the way.
Lyme – Another Round of the Disease
So how did I miss it this time? I didn’t realize dizziness was a sign of Lyme. The past experiences I had with it were joint pain, stiff neck, and fever. Of course, the first time I had it I didn’t know.
It took me months before I went to the doctor to complain of joint pain. I had been jogging for months and thought it was the jogging causing it.
Then, I was diagnosed with Lyme in July over 10 years ago in 2004. I was only on medication for one month from a local doctor.
Next, I then got sick again in the late fall of that year with a stiff neck. Once again I was treated for 4 weeks.
The next year I developed Meningitis. It was determined through a spinal tap at a local hospital. Ever seen the needle they use for that?
The next year I developed Meningitis. It was determined through a spinal tap. Ever see the needle they use for that? Click To Tweet
Hospitalized for Lyme Meningitis
I was hospitalized for a week with meningitis. This time I had a severe headache and sensitivity to light. They put me on morphine. I never forget thinking “Everyone I knew on morphine had died, will I die?”
My neurologist happened to pop in when he saw my name on the door of my hospital room. He asked if anyone gave me a fiorinal. Once he was able to give me fiorinal it broke the week-long worst migraine of my life. But the light sensitivity and other side effects of Lyme meningitis remained.
My kids were little at the time, it was a frightening experience. It took months to recuperate in bed and out of work. I could not go outside without pain from sunlight. Likewise, I could not watch TV or use the computer – the lights from them hurt terribly.
I remember my family was taking my dad to a Pawsox baseball game for Father’s Day that year. However, I could not go 🙁
Once I started to get better in the Fall I started to do research. I found a Lyme doctor in the area (Dr. Gloor) and swore the next time I would go directly to him.
Once again months later the symptoms returned and I did visit the Lyme specialist. Dr. Gloor told me I was never treated long enough from the beginning or after I had a severe bout with Lyme meningitis.
He kept me on medications for a year. The medications were Plaquenil (hydroxychloroquine) along with antibiotics.
He did many tests to determine if the Lyme was gone before taking me off the meds. While on hydroxychloroquine for the year I had to visit an eye specialist every 6 months. My eyes remained fine. (Some people it was thought back then could have eye issues from it.)
The Cases Against Dr. Gloor
Since then the RI Department of Health has tried to take away his medical license – for overtreating patients! There is a petition and a Go-Fund page for Dr. Gloor from his patients. I’ve done both for this doctor that saved me from this horrible disease.
Now in 2020, I have a friend who has gone to him for Lyme with much success as well with her Lyme disease. She was also prescribed Plaquenil (hydroxychloroquine) with antibiotics.He kept me on medications for a year. The medications were Plaquenil (hydroxychloroquine) along with antibiotics. #MyLymeStory Click To Tweet
Lyme Gets in the Way Again
The following summer I spotted the classic rash with a bull’s eye. I went directly to the Lyme doctor that day. Once again I was put on medications. I got lucky this time as it did go away within 4 weeks. The following summer the symptoms returned. I had not seen the rash as with my first time.
Hence, back to the Lyme doctor I went. I began to get to know this doctor who had Lyme several times himself pretty well.
After months of medications, my neck still bothered me. He could not determine if it was Lyme again for sure. He agreed for me to try acupuncture.
That’s when I started to go for acupuncture treatments. It was one of the best things I did for my overall health. Acupuncture can boost your immune system among many other things.
My Recent Lyme Saga – 2014
So last week during my vacation while driving home from New Hampshire with a girlfriend (in 2014). I started to develop a stiff neck. Within an hour I felt myself burning up. I got home to discover I did indeed have a fever. It was getting late so I went to the local walk-in center.
After doing some tests and being examined they told me it was Lyme disease.
How could it be I thought? I thought I knew a lot about this mysterious disease. I had been at this walk-in clinic months before complaining of dizziness but no one thought of Lyme.
This time my fever was 104. The walk-in clinic recommended I have someone stay the night in case it went up. (I didn’t, living alone at that time.)
Originally, they found no reason for my symptoms. It came and went and I didn’t think much of it. (Mistake #1!)
I then got sick again 2 weeks ago during a yoga class. Hence, I should have gone to the doctor at that point. (Mistake #2!)
I blamed it on other things and besides the cost of going to the doctor and having tests had gone up dramatically this year.
Then, I went jogging the day before I got the fever and felt pain in my knee. I thought, “Weird,” I haven’t felt this in years and if it comes again I’ll get it checked. (Mistake #3!)
So, it wasn’t until the stiff neck and fever came driving home from New Hampshire that I knew it must be Lyme or Lyme related. Moral of the story?
Tips To Avoid Getting Lyme Disease
- Wear clothing with permethrin. (I just ordered mine from Insect Shield).
- Keep your grass cut short and your yard free of deer-attracting plants and trees.
- Wear light-colored clothing.
- Don’t work in your yard at dawn or dusk. Ticks love that time of day.
- Do a tick check when you are done outside. They love to bury themselves near feet or head and ears.
- If you find a tick bring it to the doctor with you. Having the tick will help them figure out which strain (s) of Lyme you have. Bringing the tick can help with your treatment as well.
I hope this will help someone else avoid getting Lyme disease or know when to go to the doctor and seek treatment as soon as possible. Be aware the tests are not always accurate as well. Furthermore, there is much controversy surrounding this disease.
Learn more about this disease if you do live in highly infected areas.
Now, do you know of a local group that is spreading awareness of this disease in Rhode Island or in the New England area? I’d love to know how I can help. Please contact me here.Lyme gets in the way not only of work but your entire life as well if left untreated or treatment is delayed.#LymeDisease Click To Tweet
Have you suffered from Lyme disease? Do you know anyone who has had Lyme disease?
Did they catch it soon or was it a long process?
Consequently, this blog post has been updated in April 2020, due to the controversy surrounding the use of Plaquenil (hydroxychloroquine) in its use of treating patients with the Covid-19 virus.
I would rather die with hope than fear and despair.
This medicine has been around for decades and used for Malaria. If someone is dying from Covid-19, why not give them this medicine? It could save so many lives!
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