May is Lyme Disease Awareness Month Blog Post #5 What are Symptoms of Lyme Disease, PART I?

Lyme Disease can effect all parts of your body so it can have a wide range of symptoms.  It can get into your brain, joints, heart, lungs, muscles and nervous system.

Symtpoms MEme

First symptoms of Lyme Disease:

  • Bulls eye rash called erythema migrans which most people don’t get.
  • Flu-like symptoms which disappear and then the infection becomes dormant

Some early symptoms may also include fatigue, fevers, joint pain and sleep problems.  But everyone with Lyme is different.

Chronic Lyme or Late Stage Lyme Disease is when the infection is no longer dormant and has invaded the body everywhere and then finally more symptoms appear.  This is where the list of symptoms become endless.  They say Lyme will become full blown when a person goes through a major traumatic event in their life.  That’s what happened to me.  I believe I got Lyme when I was young because I have many illnesses my entire life.  And, I believe the Lyme really appeared when my mom got diagnosed with cancer and 6 months later died because that is when my migraines,  depression and constant nausea started.  

My Symptoms of Lyme Disease:

  • Migraines – Daily
  • Migratory joint pain.  It means you have pain in your joints that jumps around to different joints.  Sometimes it feels like someone is ripping your joint open and then the next day it’s a different joint.  
  • Burning Pain – Feels like your body is on fire.  It’s all over.  Arms, palms, hands, fingers, legs, calfs and bottom of feet.
  • Nausea and vomiting
  • Tremors  – really bad neurological problem that causes your body to shake.  It is especially bad when the burning pain is bad.
  • Muscle aches
  • Electricity shooting pain.  This is horrific!  I feel like someone has plugged my body in an outlet.  
  • Insomnia.  Trouble falling asleep and constantly waking up in the night. 
  • Crippling Pain in hands, fingers and legs.  It feels like my hands and legs have stopped functioning and I can’t hold something or walk at times.
  • Severe anxiety
  • Depression
  • Eye Twitching
  • Mood swings and irritability.  Seems worse with more pain.
  • Severe fatigue
  • Low grade fever
  • Memory loss and forgetfulness
  • Brain fog
  • Stomach pain and cramps
  • Breathlessness called “Air Hunger” which feels like you can’t get oxygen in.  Very scary.  You become completely out of breath just going from your bed to the bathroom.  Having your own pulse oximeter helps you relax and make sure you are getting enough O2.
  • Hearing problems
  • Panic attacks
  • Itching – mostly head, ears, eyes and face but sometimes all over body itching.
  • Heart murmur 
  • Light and sound sensitivity
  • Lightheadedness
  • Neck pain, stiffness and cracking
  • Poor concentration
  • Sparklers shooting at my hands, arms and legs.  Feels like someone is holding a sparkler near me and the sparks are sharp when they hit me.
  • Weigh gain
  • Thyroid problems
  • Overall body weakness
  • Chronic dry lips
  • Digestive issues or upset stomach
  • Chronic chest cough
  • Anger
  • Constant nasal issues and allergies
  • Sweating.  This could be day or night sweats.
  • Rage
  • Menstrual and PMS problems
  • Sleep paralysis and nightmares
  • Teeth grinding
  • Sensitivity to heat
  • Ear pain
  • Facial Paralysis.  Luckily I’ve only had this once.
  • Tingling.  Sometimes I get random tingling in different parts of my body.

So those are just my symptoms but the list goes on and on of the different type of symptoms a person with chronic Lyme Disease can have. 

Here is a Lyme Symptom Checklist that Dr. Joseph Burrascano created to help see if someone has Lyme Disease.

Here is aan MSIDS Questionnaire by Dr. Richard Horowitz to evaluate if you have Lyme Disease.

The Lyme Research Alliance also has a good symptom checklist

Remember even if you don’t test positive for Lyme Disease you still may have it.  A clinical diagnosis can be made by a Lyme Literate MD.


Previous Posts in this Series

May is Lyme Disease Awareness Month Blog Post #4   The Great Imitator

May is Lyme Disease Awareness Month Blog Post #3 What is Lyme Disease?

May is Lyme Disease Awareness Month Blog Post#2: Prevention is the only cure!

May is Lyme Disease Awareness Month Blog Post#1 Lyme Disease Awareness Month Begins

 

 

It’s not my fault I have Lyme Disease

It’s not!  It’s really not my fault!  I don’t even know how or when I got it.  But I feel like it is my fault because I have a disease that most doctors don’t believe exists.  It’s not my fault that doctors are uneducated in Chronic Lyme Disease or Post-Treatment Lyme Disease, Co-Infections and all the other things that come with it.  But it’s really not fair to treat someone so poorly because they have it.  I would be treated so much better if I had Cancer.  Lyme Disease is much worse than Cancer!  You are thinking,…NO SHE’S CRAZY!  But it’s true.  You CAN die from Lyme Disease.   Yes, that is true.  It’s a scary disease.  So let’s compare Breast Cancer to Lyme Disease.

American Cancer Society   – The American Cancer Society’s estimates for breast cancer in the United States for 2016 are:

  • About 246,660 new cases of invasive breast cancer will be diagnosed in women.
  • About 61,000 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
  • About 40,450 women will die from breast cancer.

In 2013 the CDC updated it’s statistics stating that they now estimate over 300,000 new cases of lyme disease each year.  And those are just the reported cases.  Unfortunately, due to the lack of education of medical doctors thousands and thousands of people are misdiagnosed.  Check out these links:

LymeDisease.org

CDC

Bay Area Lyme Foundation

The number of people that die from Lyme Disease is not clearly known because most cases of Lyme are misdiagnosed as something else like, Fibromyalgia, ALS, MS, RA, CFS, Alzheimers, Crohns, Psychiatric Disorders, any auto-immune disorder and numerous others diseases.  That’s why it’s called The Great Imitator”  Check out New York Times 1993,  Under Our Skin Article 2012,  and see Dr. Horowitz, MD  and many other books, books and more books.

If I had Cancer no one would even think that I was faking the crippling pain and nausea.  No one would ever questions that I wasn’t suffering.  No one would ever think I was making it all up.  No one would treat me like an addict just seeking drugs.  Seriously, think about it.  No one!  Not Doctors—Not Friends—Not Family—Not Co-Workers—No One!  Have you ever doubted anyone when they told you they had or have Cancer.  No, I didn’t think so.  Have you ever doubted anyone when they got sicker while doing chemo treatments.  No, I didn’t think so.  That’s why Lyme is worse.  There is NO support!  There is only inadequate medical care and uneducated and unsupportive doctors.

So here’s to all those medical professionals and others who think I have something else besides Lyme. Or think that Lyme is easily treated.  Or think I make up this pain.

  1. I have been to numerous doctors before seeing a Lyme Literate MD
  2. I have had doctors rule out other things you think I have.
  3. No, the lab that did my lyme testing is not fake.
  4. I have spent a year educating myself about Lyme Disease and I know a lot more about it than you do.
  5. My pain is real!  I had a life and a career before getting daily migraines 21 years ago.  It’s not my fault my body is on fire and no one has figured it out yet.
  6. I have tried many daily drugs to lessen my pain and they DO NOT WORK so I need pain meds.
  7. I look fine to you because I fake it!  I lie about how I am doing because most people really don’t care when they ask “How’s it going?”  or “How are you?”  We all know that is just a common meaningless gesture.
  8. I am not an addict seeking drugs.  I am crippled and can barely walk without pain meds.  I feel like a “Walker” because I run into walls in my house because I am so feeble and ready to collapse most of the time.
  9. Because Lyme comprises my immune system I have many other illnesses but I still have LYME!
  10. Most treatments are not covered my insurance because the CDC determines treatment courses and they believe one course of antibiotics is enough.  Lyme is not easily treated and cured.  It’s complicated!

As you can see the number of reported cases of Breast Cancer and Lyme Disease are around the same each year.  But remember many cases of Lyme are not reported because they are misdiagnosed.  Have you read about Kris Kristofferson?

Here’s an interesting article that explains some of the controversy of Chronic Lyme

 Here is another good article about the controversy of Chronic Lyme

So to those medical professionals who still don’t think I have Lyme Disease, what do you suggest I do?

  • Do you think I should start over and re-do tests that came back negative?
  • Do you think I should just pick a diagnosis that fits in your box?
  • What do you expect me to do when I receive negative test results for the things you think I have?
  • What do you expect me to do when the pain is real and I’m told it’s not and that I need psychiatric meds?
  • What do you expect me to do when I am crippled with pain and no one will help me?
  • What do I do when the only tests that come back positive are for infections called lyme disease and lyme disease co-infections.

Medical Professionals:

  • Please get educated!
  • Please stop treating me like a drug addict.
  • Please don’t rule out Lyme Disease as a diagnosis for other patients and send them to a LLMD.  Don’t do the testing yourself.  You don’t know what you are doing!

I wish everyone could spend ONE day in my shoes to develop some compassion.  You would also begin to understand what fatigue and pain really is and learn that most days I feel like I am going to die.  Because I can tell you you have NO CLUE!

 

Beautiful Song by Marina Morgan 

Read some of the Myths of Lyme Disease

Lyme is a huge epidemic and the denial by our government is killing people like me.

I have Lyme Disease Educational DVD’s I am happy to lend to anyone interested