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 #7: Testing for Lyme Disease

Why is it so hard for doctors to determine if a patient has Lyme Disease?  

In a previous post I mentioned that most doctors are not educated in Lyme Disease and that is why it goes undiagnosed and misdiagnosed for many patients for years.  

  • Since it mimics over 300 other diseases and doctors are not educated in it they assume it’s something else.
  • Since the the list of symptoms are endless it gets misdiagnosed as something else.
  • Most doctors think it does not exist in California so they don’t even consider it a possibility here.  They are lead to believe it only exists on the East Coast in the USA.  And if you get your doctor to test for it they don’t understand the testing so most everyone gets false negatives.  So even if your test comes back negative IT DOES NOT MEAN YOU DO NOT HAVE LYME DISEASE. 
  • The tests are not 100%.
  • The CDC’s two-tier testing method is flawed.
  • Most people have never heard much about Lyme Disease.
  • Most people have never heard of Lyme Literate MD’s

So what are the tests to determine if you have Lyme Disease?

If you get a test done at your regular MD they are only testing for one strain of Borrelia Burgdorferi.  And they are testing for the antibodies of that bacteria.  So basically they are testing your blood to see if your immune system responded to an infection and is trying to fight it off.  

I got tested on September 15, 2015 for the antibody of Borelli Burgdoferi (ELISA test) from my primary care physician and it came back negative so of course I was told I did not have Lyme Disease.  But that was not true.  The doctors don’t know about Lyme Disease so they do one blood test and rule it out.  But to rule out Lyme Disease you need a clinical diagnosis and possibly Western Blot testing of Borrrelia and co-infections.  You can’t just test for ONE bacteria when most people can get more than one bacteria from a tick bite.  And your body can not fight off multiple infections at the same time.  So if you only test for one you are not getting accurate results.

So here is the basics on what testing is available?

ELISA  – Enzyme-Linked Immunosorbant Serum Assay

ELISA

Most doctors who are not educated in Lyme Disease will do the ELISA blood test.   And  if it’s negative they don’t do any other testing.  

Results from ElISA are as follows:

< = .90 is Negative

0.91 to 1.09 is Unequivocal 

>= 1.10 is Positive

My test result was < .90 so it’s assumed negative.  If it came back higher than 0.90 then a Western Blot test would have been done.  But it wasn’t and it was a year later when I went to a Lyme Literate MD that I had it done.  NOTE: 50% of the ELISA tests produce false negatives!

The Western Blot:

The Western Blot is testing different classes of antibodies IgM and IgG.  My understanding is that this test is more sensitive and may show positive results when the ELISA show up negative.  The IgM and IgG are Immunoglobulin type M and G. 

So if a patient has a lot of symptoms and possibly symptoms for a long time then the Western Blot should be done.  In fact, most people say you don’t even need blood tests since a clinical diagnosis for Lyme Disease can be made.  

However, I wanted proof that all my pain and other symptoms were caused by something.  Since I was told so many times I was making them up I wanted proof from a lab saying I was not making these up.  But getting a Lyme Diagnosis didn’t help since most most doctors still thought I was making these symptoms up.  Unfortunately, most insurances don’t cover the costs of these tests and they are very expensive.

The Western Blot still confuses me.  You get a report of the IgM and IgG antibodies and different bands that are either 

 –   Negative 

IND  – Indeterminate 

 +   Positive

Western Blot MEMeThe problem with the CDC is that they are conservative and say you must have 5 bands positive of Borellia Burgdorferi to have Lyme Disease.  Again, if you just stop at the ELISA then you really don’t know if you do or do not have Lyme Disease.  I can’t stress this enough.  You must see a Lyme Literate MD to rule out Lyme Disease.  Your primary care physicians and neurologists and other specialists at “TOP” medical facilities do not know how determine if someone has Lyme Disease.  These places will only do the ELISA test and stop there if it is negative.   

I did gets some positive bands and IND results for the IgM test for Borrelia Burgdorferi.  And I also tested positive for the co-infection Babesia.  So testing positive for Babesia, a co-infection basically means I have Lyme Disease.  


Both of these tests are flawed.  And depending on the lab used the protocols may be different.  And the CDC two-tiered testing is flawed.  So here are some links that can explain it much better than me.


What is PCR (Polymerase Chain Reaction) Tests and will there every be an accurate test?  Check out owndoc.com/PDF


My advice:  Go with your gut!  If you feel you didn’t get properly tested or the right diagnosis then go to a Lyme Literate MD.


Previous Post in this Series

May is Lyme Disease Awareness Month Blog Post #6 What are the Symptoms of Lyme Disease?

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

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

 

May is Lyme Disease Awareness Month Blog Post #6 What are Symptoms of Lyme Disease, PART II?

As I previously mentioned there are MANY symptoms of Lyme Disease and all of the co-infections have list of specific symptoms too.  A Lyme Literate MD (LLMD) can determine you have a specific co-infection just by your symptoms and they have to because the testing isn’t 100% accurate.

What are the co-infections?

  • Babesiosis (Babesia)
  • Bartonella
  • Ehrichlia
  • Mycoplasma and Anaplasama
  • Colorado Tick Fever and Rocky Mountain Spotted Fever
  • Powassan Virus
  • Q Fever
  • and more here at lymedisease.org

Here is a chart to compare symptoms of Lyme and the co-infections.

Babesiosis (Babesia) is the only co-infection that I test positive for but I’ve been told I probably have Bartonella and Ehrichlia too.

Here is a great website that lists the symptoms of Lyme Disease and co-infections.

Lyme-Symptoms.com

Babesia


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

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

May is Lyme Disease Awareness Month Blog Post #4 Why is Lyme Called “The Great Imitator”

Lyme Disease has been called “The Great Imitator” because it mimics so many other diseases.  And because the symptoms mimic so many other disease it is often misdiagnosed.  

Because most doctors are not educated in Lyme Disease they frequently misdiagnosis their patients.  In fact, most doctors don’t even consider a Lyme Disease diagnosis. They may test for it but they are not educated in the testing and therefore when a patient test shows up negative they say they do not have Lyme Disease.

Hopefully at some point in the future

  • medical students will be educated properly
  • all medical specialities will be educated in Lyme Disease
  • testing for Lyme Disease will be more accurate
  • testing will be easily available for all patients
  • testing will be covered by medical insurances
  • medical professionals won’t dismiss it as possible diagnosis when the patient doesn’t remember getting bit by a tick.  
  • Medical professionals will stop telling patients that they are making up the symptoms and send them to a psychiatrist.  Because believe me, YOU CAN NOT MAKE UP THESE SYMPTOMS
  • Medical professionals will stop saying they don’t know why you have these symptoms and just write prescriptions to mask them.
  • Treatment for Lyme will become easier to get and more effective.
  • Big pharma will not be in control of our medical system
  • CDC will stop with the lies about Lyme Disease
  • A cure will be discovered!

So why does it matter if you get a Lyme Diagnosis or not?  Why does it matter if you get a diagnosis of MS, ALS, Bipolar, Parkinsons, Alzheimers, Chronic Fatigue Syndrome Depression, Chronic Migraines or Fibromyalgia instead of Lyme Disease?

Lyme Disease can get into your brain, joints, heart, lungs, muscles and nervous system.  It can effect all parts of your body so if you get a proper diagnosis you may be able to treat your condition.  Unfortunately right now you must see a Lyme Literate MD (LLMD) to get a proper diagnosis.  But because it’s “The Great Imitator”  seeing an LLMD is the only way to rule Lyme Disease out. Your regular MD or the specialist you go to now CAN NOT rule out Lyme Disease as the cause to your symptoms.

It all goes back to the same thing I said in a prior blog post.  Doctors are not trained to determine the cause of symptoms.  They are trained to give a diagnosis in their field of expertise and give pills to mask the symptoms.  If you want to know WHY you have these symptoms you should see an LLMD.  You should especially see an LLMD if you are given multiple diagnoses.  

If you don’t want know why you you started losing you memory or why you started getting tremors then just accept the diagnosis you have.  If you don’t want to know why you started having pain or why you have brain fog or are suddenly completely exhausted then just accept the diagnosis you have.  I didn’t!  I did not accept Fibromyalgia and a variety of other things as my diagnoses.  I knew something was really wrong.  I didn’t even have the typical tigger points for a Fibromyalgia diagnosis but they gave me that diagnosis anyways.  NO!  I WOULD NOT ACCEPT IT.  I wanted to know WHY!  I had doctors tell me I didn’t need to go to a Lyme specialist.  Once a doctor told me that I didn’t trust anything they said.  How can someone be so sure you don’t have something when they are so uneducated about it?  

There are over 300 disease that mimic Lyme so you might consider seeing an LLMD if you have any of the following medical conditions.

  • Fibromyalgia
  • Chronic Fatigue Syndrome 
  • Multiple Sclerosis (MS)
  • Psychiatric Disorders
  • Lupus 
  • Rheumatoid Arthritis 
  • Complex Regional Pain Syndrome (CRPS)
  • Amyotrophic Lateral Sclerosis (ALS)
  • Any Autoimmune Disorder
  • Chronic Migraines or other headache disorders 
  • Juvenile Health Problems like arthritis, memory loss, or other pain
  • Alzheimers
  • Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS)

If you have are given several diagnoses or any of the above diagnoses and you have some of these listed below you may want to consider Lyme Disease as the cause.

  • ADD and ADHD
  • Autism Spectrum Disorders
  • Thyroid Disorders
  • Sleep Disorders
  • Memory Problems
  • OCD
  • IBS
  • Chrons’s 

List of over 300 diseases that mimic “The Great Imitator”

Another list of over 300 diseases that mimic Lyme Disease


Previous Posts in this Series

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

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

When I was first diagnosed with Lyme Disease this is what I found out:

  • Lyme Disease can be bacterial and viral infections that you get from tick bite.
  • Lyme Diseases testing is inaccurate .
  • You can pick up more than one infection from a tick.
  • Other infections you get are called co-infections.
  • Ticks can be so small that most people don’t know that they have been bit. Some are the size of a poppy seed
  • Lyme Disease is referring to the bacterial infection Borrelia Burgdorferi.
  • My test showed I was positive for the co-infection called Babesiosis or Babesia.
  • I tested negative for Lyme Disease but because I tested positive for a co-infeciton, I have Lyme Disease.  The blood tests are testing antibodies that my body produces to fight an infection.   My body can only fight off so many things at once so not all infections will pop up positive.
  • When the Babesia infection gets better or goes away my body will start to fight the other infections and Lyme Disease will test positive.
  • Lyme Disease has been around for hundreds of years and was named after the town Lyme Connecticut.
  • Willie Burgdorfer was the scientist trying to determine why the so many people in the town and multiple family members in Lyme Connecticut were getting sick.
  • Lyme Disease is misdiagnosed all the time.
  • Many diseases mimic Lyme Disease so people are misdiagnosed.
  • Lyme Disease and it’s co-infecitons can cause problems in every part of your body.
  • My chronic daily migraines I have had for almost 20 years are most likely from Lyme Disease.
  • I’m going to get sicker before I get better.
  • There is NO cure for Lyme Disease-your symptoms will hopefully go in remission.

So that is the list of what I learned when I was first diagnosed November 9, 2015.  Then I began researching and reading more and more about Lyme Disease and here is what I found out.

What is Lyme Disease from lymedisease.org “Lyme disease is a bacterial infection primarily transmitted by Ixodes ticks, also known as deer ticks, and on the West Coast, black-legged ticks. These tiny arachnids are typically found in wooded and grassy areas. Although people may think of Lyme as an East Coast disease, it is found throughout the United States, as well as in more than sixty other countries.” “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.”

History from the Bay Area Lyme Foundation “Ticks and Lyme disease have been around for thousands of years. In fact, a recent autopsy on a 5,300-year-old mummy indicated the presence of the bacteria which causes Lyme disease. A German physician, Alfred Buchwald, first described the chronic skin rash, or erythema migrans, of what is now known to be Lyme disease more than 130 years ago. However, Lyme disease was only recognized in the United States in the 1960s and 1970s. And the bacteria that causes it – Borrelia burgdorferi – wasn’t officially classified until 1981.”


Additionally I found out:

  • A tick is not the only way of contacting Lyme Disease
    • Ticks
    • Fleas
    • Spiders
    • Flies
    • Mosquitos
  • If you know you have been bit by a tick you are one of the lucky ones.
    • Early Lyme Disease  
    • Most people don’t get a rash but if you do take photos for the doctor.
    • Most people get are flu-like symptoms after they have been bit.
    • Testing early frequently produce false negatives.
  • If not caught early than it can lay dormant in your body for years or decades.
  • If not caught early it can cause permanent long-time health problems.
  • People die from Lyme Disease.
  • Most people with Lyme Disease have more than one infection.
  • Most people get many wrong diagnoses and spend years being sick before they see a LLMD.
  • Most people do not get better with antibiotics.
  • After laying dormant Lyme Disease will start to appear when you are going through a stressful or traumatic event in your life.
  • Lyme disease may be sexually transmitted.
  • Lyme Disease infections may be transmitted through donated blood.  The American Red Cross website specifically states that you are not eligible to donate blood if you have Babesiosis (which is a lyme co-infection)  Sadly, since misdiagnosis is so common most people don’t know they have it.  
  • Lyme Disease can be pass from mom to baby lymedisease.org
  • Our government denies that chronic Lyme Disease exists.
  • The politics around Lyme Disease are keeping patients sick.

It’s very overwhelming when you get diagnosed with Lyme Disease.  The more I read.  The less I know. It bothers me that the CDC denies chronic Lyme exists even thought there are over 700 studies proving that it does.  That 90% of treatments for Lyme Disease are not covered by insurance (thanks CDC).  And, when I mention that I have Lyme Disease to medical professionals they treat me even worse.  They ask me if I am under more stress and refer me to a psychiatrist because they think I make these symptoms up.

Believe me.  You can not make this SH** up! 

Prevention is the only cure!


Previous Post

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

 

 

 

 

 

May is Lyme Disease Awareness Month Blog Post #1

Every day for the next 31 days I will post information about lyme disease to help raise awareness of this debilitating, potentially fatal, complicated, undiagnosed, misdiagnosed, under-treated, uninsured, mostly denied, do-it-yourself disease that I have.

For 31 days, you will learn and read about

  • What is Lyme Disease and what are Lyme Co-Infections
  • How you can get Lyme Disease
  • How to protect yourself from getting Lyme Disease
  • What to do if you get bit by a tick
  • The fact that most medical professionals have no clue about Lyme Disease
  • The politics, denial and lies about Lyme Disease
  • My 19 year journey to a Lyme Diagnosis
  • What life is like for someone with Lyme Disease
  • What my life has been like with Lyme Disease
  • Why it is called “The Great Imitator”
  • What diagnoses should be evaluated by a Lyme Literate MD
  • Symptoms of Lyme Disease and Lyme Co-Infections
  • Why medical insurance denies treatment for Lyme Disease
  • Stories of other Lyme sufferers that are very similar to mine
  • The fact that so many people have it and don’t know it
  • Why Lyme is Hell and why YOU DO NOT WANT TO GET IT

I did not know anything about Lyme Disease until 2015 when I was diagnosed.  I had no idea how easy it is to get and how hard it is to treat.  I had no idea that most doctors are uneducated in it so they just assume you don’t have it.  I had no idea that most people do not get a rash and do not even know they have been bit, like myself.  I also did know that Lyme Disease is an STD and can be passed from mother to baby in the womb.   And the biggest thing that I did not know is that

LYME DISEASE CAN CAUSE MIGRAINES.

I’m extremely disappointed that for almost 20 years not one of the “TOP” headache/migraine specialist in the San Francisco Bay Area ever suggested that I might have Lyme Disease.  Not one!  They all told me that they did not know why I had daily migraines.  They assume that if someone in your family had some migraines then that is why you have it.  Not once did any of these “TOP”  doctors try to determine the CAUSE of my daily migraines.  

You don’t just start having a migraine one day that never goes away without a reason.  

There is a CAUSE for everything.  

Our medical professionals are not trained to determine the cause of your symptoms.  They are taught to give you a diagnosis and a pill to mask your symptoms.  And if you get side effects from a medication they give you another pill to mask the side effects.  It’s maddening!  And with migraines they give you medications to take daily to prevent them without trying to determine the cause.  Headache doctors have you do a food diary to determine your triggers, like food, red wine, chocolate and weather changes but not once do they try and figure out the cause.  They are trained to diagnose you in their specialty only so when you see a neurologist you will get a migraine or some type of headache diagnosis.  It’s the same at other doctors too.  Let’s say you have pain in your body and you go to a Rheumatologist.  The Rheumatologist will give you a diagnosis in their field of expertise without considering other possibilities.  Like Fibromyalgia.  Fibromyalgia is a diagnosis many people get when you have pain and they don’t know why.  Why is that?

It happens because they don’t try and determine the cause of pain or other symptoms. And many doctors send you to a psychiatrist because they think it’s “all in your head”.  So when you see a psychiatrist you get a diagnosis of a mental health disorder.   You end up being given pills and more pills for these diagnoses.  

  • But what if you don’t have what they say?
  • What if you take their pills and don’t get any better and maybe even get other symptoms or “problems”?.
  • What if you find yourself with several diagnoses and on several medications and sill feel miserable?

If you have been seeing many doctors and given many different opinions or diagnoses and put on many different medications you should consider getting tested for Lyme Disease.  YES, all of your doctors will tell you that YOU DO NOT HAVE LYME DISEASE.  But please, do not believe them.  In fact, some will test your for Lyme Disease and you will get a false negative because they don’t know about testing for Lyme Disease.  So even if you get a false negative, which I did, it does not mean you do not have Lyme Disease.  I can tell you that the “TOP” medical facilities in the San Francisco Bay Area do not know about Lyme Disease and testing with them will definitely give you a false negative. 

In the next 31 days you will learn more about Lyme Disease and then you can decide for yourself if you need to see a Lyme Literate MD. 

And,  for any that has chronic migraines – YOU SHOULD SEE A LYME LITERATE MD TO SEE IF YOU HAVE IT.  The reason I say that is because some of the treatments I am doing are getting rid of my daily migraine I have had for 21 years.

Thank you for following me this month.  Feel free to share my blog.