Chronic Lyme Disease: Life with a Chronic Illness

I recently came across this great video of people describing what it is like living with Lyme Disease.  It’s really hard for “healthy” people to understand and they say..

You don’t get it until you get it.

This is so true.  You can not even in your most vivid imagination comprehend how horrific, debilitating, painful and disabling this disease can be.  This disease is worse than cancer.  Yes it is and here is why:

  • You get zero support from the medical community because our own government denies Chronic Lyme Disease exists.
  • You are told your symptoms are made up and “all in your head”  and you need a psychiatrist.  You can not make up these horrific symptoms!
  • There is no protocol to heal and it is a do-it-youself disease.
  • 90% of treatments are not covered by insurance so you can go broke trying to heal.
  • You can die from Lyme Disease.  Lyme Disease and Co-infections can get into every organ and tissue in your body and can cause everything and anything.
  • Your friends and family may not believe you are even sick.
  • You doctors will tell you you have XXX and say there is no known cause for what you have.   So you are really only getting a name for your symptoms and not a true diagnosis.  

Everyone in this video has Lyme Disease.  They have all received many other wrong names for their symptoms over the years.  A true diagnosis is when you determine the CAUSE of your symptoms.  Please leave any doctors that say you have MS, ALS, Fibromyalgia, Parkinson’s, Chronic Fatigue Syndrome, Chronic Migraines, Alzheimers, Mental Health Issues and anything else unless you are given a cause and treating the cause.  If you are just taking medications to mask symptoms or to slow the progression you are not treating the cause.   

I was misdiagnosed for 20 years.  I was told:

  • some people just have migraines.  
  • oh your mom had some so that’s why you have them.
  • I don’t know why you have a migraine every day.
  • there isn’t a known cause for migraines.
  • it’s a neurological disease.

ALL WRONG!!!  You do not just wake up one day with a migraine and it doesn’t go away for decades.  Just because my mom had some does not tell me why I do.  Just because those doctors didn’t know why I had one doesn’t mean there is not a reason.  

History will look back on Lyme Disease 30 years from now and it will be the biggest lie, fraud and criminal act committed by the medical community ever!

I’ve been sick for 22 years.  I got lyme at least 40 years ago or was born with it and prevention is the only cure.  You must protect yourself every time you go outdoors.  One tiny bite can ruin your life.

Disappearing From Society – a look into Life with Chronic Illness

 

 

 

 

 

 

What is Mycoplasma?

I’ve been reading more and more about Mycoplasma and I am shocked by what I am finding out.  I”m still in the learning phase about but feel it’s important to blog about.  

Apparently, most everyone (75%) with Lyme Disease have Mycoplasma.

I tested (high range) positive for Mycoplasma pneumonia, which is the most common one for Lymies.  It’s strange that not one of the 3 Lyme Literate MD’s (LLMD) I have seen every really discussed the results or the meaning of it.  I wish that they had because it seems to be really scary and important.  It was brought to my attention recently that women with cervical cancer have mycoplasma.  WOW!

Check out this article by RawlsMD about it. Understanding Mycoplasma


Lyme Disease is Borrelia Burgdorferi bacteria and there are over 300 strains.  But everyone with Lyme Disease does not just have Borrelia they have co-infections as well.  So going forward I will refer to them as LymeC0’s.  And remember that Lyme is “The Great Imitator”.  Most people with MS, ALS, RA, Parkinson’s, Fibromyalgia and CFS are misdiagnosed.  These disease are actually caused by LymeCo’s.  So if you don’t treat the cause you will never get better.

What is Mycoplasma?  Mycoplasma is a bacteria and there are many types.  And like most LymeCo’s it can cause a wide range of symptoms making it difficult to diagnose.   

How do you contract this infection?  Mycoplasma can be from a bit of a tick, mosquitoe, flea or biting flies.  Mycoplasma can also be sexually transmitted.

What are some diseases/illinesses that are connected to having Mycoplasma infection?

  • Bronchitis
  • “Walking” pneumonia
  • Rheumatoid Arthritis (RA) – The article states that 90% of people diagnosed with rheumatoid arthritis test positive for Mycoplasma.  WOW!  
  • MS
  • ALS
  • Parkinson’s 
  • Leukemia – WOW
  • Cervical and ovarian cancer – OMG!  I’ve heard of several people talking about the link of  cancerous cells to LymeC0’s.  
  • Autoimmune diseases
  • Fibromyalgia* and Chronic fatigue
  • Gulf War Syndrome
  • Crohn’s disease
  • Hearing loss and ringing in the ears  –  had to add because I have this
  • Fertility problems
  • and more….

Remember that many of these have been known to be caused my LyemCO’s and Mycoplasma is considered a co-infection so there is definitely a connection.


Treatment of Mycoplasma

I guess one way would be antibiotics since it’s a bacterial infection. But I’ve read it can linger even after antibiotics.  I also read people treat with antimicrobials.

Another way would be natural methods.  Here are a couple of links.

Natural Remedies by Earth Clinic

Herbal Remedies by Goodbye Lyme

Herbs by Natural News


I’m shocked by this and I have so many questions.

  • Why doesn’t the medical community consider this important?
  • Could some cancer be prevented or treated differently if patients are testing for Mycoplasma early?
  • Should all these illnesses listed above be tested for this?
  • Would less people be suffering if this was tested?
  • Could lives have been saved if this was tested?
  • What about women who get miscarriages or can’t conceive?  If they treat this will this change that?  Pubmed link here.
  • Would there be less hysterectomies if the mycoplasma was treated?

I don’t know the answers but would like to keep learning more about Mycoplasma. I’d love to hear from others about this too.

I’ve had bronchitis many times and I’ve had the “walking” pneumonia as well.  So if it can linger after antibiotics then I guess that is why it is still in me.  What other problems of mine were or still are related to Mycoplasma?

 

 

 

 

 

I have lost all faith, trust and confidence in our medical community.

Why?

Because the medical doctors have failed me for over 20 years.


I have been 

  • disrespected,
  • dismissed,
  • treated like a drug addict,
  • bullied,
  • lied to,
  • told I can’t be a patient anymore because I could not drive an hour to my appointment with a level 8 migraine and throwing up, 
  • told I was just too stressed and that’s why I had debilitating symptoms,
  • told I need psychiatric medications when I was debilitated in pain, and
  • misdiagnosed for 20 years!

WAKE UP MEDICAL DOCTORS!!!  

There is a cause to all symptoms!

YOU ARE NOT EDUCATED IN LYME DISEASE!


You are not trained to heal any chronic illness!

You are only trained to give a label to symptoms and give pills to manage them.  The label is not a true diagnosis.  Determining the cause it the true diagnosis.  


Medical doctors are taught false information about Lyme Disease and Co-infections and that needs to change.  

All physicians need to stop dismissing Lyme as a possible diagnosis. The unreliable CDC recently up there estimate from 30,000 new cases a year to 300,000. However, because it is misdiagnosed it has been estimated that the number is closer to 2,000,000 new cases each year based on the number of misdiagnosed and undiagnosed patients.  


LYME IS THE NEW AIDS

#AIDS2.0


It does not matter

  • that a person does not remember getting bit by a tick
  • if they did not get a bulls-eye rash
  • that the test you did came back negative
  • that they live in California or any state for that matter

If you thought your patient had a heart or nerve problem you would send them to that particular specialist. So, please send patients to a Lyme specialist instead of telling them they need to see a psychiatrist. And stop giving everyone a Fibromyalgia diagnosis because there is a CAUSE to their pain.

Lyme is extremely EASY to get

and

extremely difficult treat once it becomes chronic.

There was only 1 doctor in 20 years that actually said I don’t know what is wrong but I’m going to try and figure it out. That doctor didn’t just give me a diagnosis and say goodbye. That doctor believed my pain and debilitating symptoms.


You may not think you do not have Lyme but you have a high probability of having it if you suffer from chronic migraine or have any mental health issues.

There is a cause to your symptoms!

The “headache” specialists failed me for 20 years.  They NEVER tried to figure out the CAUSE.  They would just say “I don’t know why you have a migraine everyday”  or that migraine is hereditary.  I went to “top” headache doctors and they are clueless. They only give pills to abort a migraine or pills to take daily to prevent them.  I believed them!  I was clueless and naive myself.  I was taught to trust medical doctors.  I was wrong to trust them and I spent 20 years suffering for no reason at all.  

I cured my daily migraine of 20 years!

Lyme testing is inaccurate the only doctor that can rule it out is a Lyme Literate MD.

There are many viral and bacterial infections that do cause migraines and any mental health disorders.  So ask why you have these symptoms and if they don’t have an answer see a different doctor.  

****You will not get it until you get it****

May is Lyme Disease Awareness Month Blog Post #15: Prevention Tips

We are half way thru Lyme Disease Awareness Month so let’s review prevention tips before moving on.  Remember,

PREVENTION IS THE ONLY CURE

According to the CDC you can easily treat Lyme Disease and patients are cured after a short course of antibiotics.  However, us patient know the truth.  Lyme is easy to get,  EXTREMELY difficult to treat and there is NO CURE.  Symptoms can go into remission but may come back later in life.


Before Going Outdoors

Protect yourself when you hike, camp, picnic or work in your garden


  1. Wear long pants tucked into high socks.
  2. Socks-no bare feet.
  3. Wear long sleeve shirts.
  4. Wear light color clothing so you can see ticks.
  5. Consider treating you clothing with repellant or buy pre-treated clothing
    • Purchase pre-treated clothing with Permethrin or buy permethrin spray to treat your own clothing.
    • Purchase Natural Sprays
    • Essential oils that repel insects. I make my own lotion with coconut oil/shea butter base and add oils.
      • citronella
      • eucalyptus
      • lemongrass
      • tea tree
      • peppermint
      • cypress
      • rose geranium
      • bergamot
      • lemon
      • Very Well
    • Wrist and ankle bands sprayed with repellant.

While Outdoors

  1. Don’t sit on rocks, branches or trees when you are outdoors
  2. Sit on a Insect Shield outdoor blanket.
  3. Do not go off the trails.
  4. Carry a tick remover or tweezers.
  5. Carry a baggy.

 


What to do before you go inside?

  1. Do tick checks
    • Check from head to toe
    • Use a sicky tape lint roller up and down you body.
    • Put clothes in hot dryer before going inside.
    • Shower off.
  2. Protect your pets
    • Talk to your veterinarian about tick medications
    • Brush off your dog after being outsideSticky_Lint_Roller_Cleaning_Tape

What to do if you get bit!

  1. Remove the tick
  2. SAVE THE TICK FOR TESTING – Free Testing
  3. Watch for a rash and take a photo for the doctor.
  4. Watch for flu-like symptoms.
  5. Visit a Lyme Literate MD for consultation.

tick removal poster

 

May is Lyme Disease Awareness Month Blog Post #14: Neurodegenerative Diseases

If you were diagnosed with a neurodegenerative disease such as Multiple Sclerosis, Amyotrophic Lateral Sclerosis (ALS), Alzheimers or Parkinson’s you should watch these videos.  You should also watch these videos if you were diagnosed with Fibromyalgia.

Dr. Alfred Miller, practiced Internal Medicine and Rheumatologist for 40 years and is a Mayo Clinic trained physician.  In 2008, he started looking into ALS when his daughter-in-law was diagnosed with it.  He heard about the ALS being misdiagnosed with Lyme Disease so he began researching more.

Video 1:  Intro

Video Part 1:  Considering an alternative cause for Neurodegenerative Diseases

Video Part 2: Proper Testing of Lyme and Chronic Lyme Disease

Video Part 3: Illnesses that are Manifestation of Lyme Disease

Video Part 4: Neurodegenerative Diagnoses in Athletes

Dr. Miller stresses the urgency of getting PROPERLY tested.  He states this because if you get properly tested and diagnosed with Lyme Disease you can then get treatment and have a chance of recovering from these conditions.

mimic disesaes

 

You can watch the videos above but he is basically saying that all of these illnesses

can present exactly like Lyme Disease and that the patients MUST be PROPERLY tested for Lyme.   The only way to be PROPERLY tested for Lyme is to see a Lyme Literate MD.

Why does it matter what diagnosis you have?  Well, it matters if you want to possibly heal and get rid of your symptoms.

 

 

 

 

 

 

 

 

 

 

May is Lyme Disease Awareness Month Blog Post #13: Personal Stories

So I thought sharing some personal stories of fellow Lymies may help people believe that this disease is real and debilitating.

My story – After 19 years of chronic daily migraines I finally found out why I was getting them.  It took 19 years, a lot of pain, a lot of depression, a lot of prescriptions, a lot of doctor visits, 2 hospitals stays, numerous ER visits and a surgical implant to finally get a diagnosis.  I never knew anything about Lyme disease and I never could have imagined that this was the cause of my migraines and various other health problems.  I encourage anyone with chronic migraines to see a Lyme Literate MD.  

If you have one health problem like, anxiety, depression, an occasional migraine or arthritis in one knee then you probably don’t have Lyme.  But it you have many conditions or have had many illnesses in your lifetime you, Lyme Disease may be the cause of them. 

Lyme Patient:  A day in the life video

WJAC-TV News

Lyme is Hell

The Irish Times

Resiliently Rachel

Read Between the Lyme

Lady of Lyme

John Caudwell

The Mighty by Alyssa Whitlock

May is Lyme Disease Awareness Month Blog Post #12: The Politics, Denial and Lies about Lyme Disease, Part III.

Here is a great 21 minute video about Lyme Disease and some celebrities that have it and the controversy around it.

Fox News Lyme & Reason

And more from the Blogger Read Between the Lyme

You might be surprised at how many celebrities have it.  Here are a few:

Ally Hilfiger

Kris Kristofferson Misdiagnosed as Alzheimers

Shania Twain

Amy Tan

Avril Lavigne

Michael J Fox diagnosed with Lyme 3 years before Parkinson’s.  Suspicious right? 

And many more……..


PREVENTION IS THE ONLY CURE